# Fibromyalgia Moms?



## bigeyes (Apr 5, 2007)

Are there any of you out there?
How does it affect your parenting?

I feel like I have limited energy for my children and they are shortchanged in so many ways because I just can't do all the things other moms can.

Do you talk to your children about it, and do they have an understanding of just how your illness limits you? Do they understand the difference between _not wanting to do things_ and _being unable to do things?_


----------



## Blooming (Feb 16, 2006)

I have Fibro, I've had it for two years. I am still struggling with how to manage it. I am in pain a lot of the time, or sleeping.

It has effected my parenting and our lives in so many ways. I am only caring for my children by myself one day a week. DH works from home 2 days, and 2 days my child is in daycare. We have no family here and it seems very hard for most of my friends to understand. I look the same (except on really bad days when I have to use a cane).

I have talked to my 6 year old about it as it comes up, he was concerned that he would get it or I would die.

When things are really bad and I am in too much pain to move, we snuggle in for a good read or a movie night with popcorn,

DH does most of the down on the ground playing. He also does most of everything else. I do the best I can and hope that I will find a way to live with this illusive illness one day. For sure it sucks.

I'm not sure that right now the kiddos understand the diffrence but I hope in time they will.

Fibro is hard to deal with, perhaps we can start a tribe here.

Another good forum with good info is Daily strength.

Hugs to you. Oh and remember Fibro effects people diffrently you may not have it as badly as I do.


----------



## *~Member~* (Feb 20, 2006)

I'm a fibro mom. I'm either always in pain one way or another or just exhausted all the time. I also have super severe anxiety that is almost crippling at times.

My dh works nights. So all the time I'm with the girls in the day he's here too (even though he may be asleep)


----------



## bigeyes (Apr 5, 2007)

For me the worst of it is being tired and getting headaches. Everything they give me to alleviate the headaches makes me _more tired.

_DSD already lost one mother so I'm sure chronic illness is an added worry for her.

Before I had this, I was superwoman, now I have kids and no energy and it's so frustrating. I'm lucky that dh is able to make a living and work as much as he does, and that I can be self employed and work at my own pace. But it's so aggravating to know I used to be so much more _able.

_ Now it's a major victory if the house is reasonably clean, everyone gets fed, I make a few bucks and it's a _no headache_ day.

I have noticed that stress really aggravates it. When I had a job where there was a lot of bullying and mobbing behavior I had neck, shoulder and back pain that miraculously went away once I was out of there.


----------



## supakitty (Mar 6, 2002)

I wrote this not too long ago about this very same feeling:

Chronic Illness

You see me and I look normal.

You see me as your colleague. Some days I greet you with a smile. Some days I look tired. Usually I am buried in work just like you, most of the time these days I just like to be alone. Some days I'm not there when I should be. Many days may go by and you begin to ask about me, why is she always absent, why does she call in sick, she doesn't look sick, she looked fine the other day&#8230;

You see me as a patient. I look fine, my tests are normal, and my illness has no name that you have found. You're tired of looking. You're tired of hearing about my symptoms. The endless battery of tests tells the story of a physically normal woman, the woman tells a different story. You offer me anti-depressants and benzodiazepines; you tell me I'm depressed.

You're right about one thing: I am depressed.

You see me as your mother. You know the look I get in public these days when I desperately need to go home and lay down. You used to argue but now you look at me and say, "Mommy, we can go home, I know you feel bad." You don't blame me for not being as good as the other mommies.

You see me as your partner. You watch me struggle and feel helpless. You hold me closely as you slowly adapt to the person I have become. You encourage me, you listen to me cry, you accompany me when I ask you to, you know when its time to go home. You look me in the eyes and tell me you believe me.

I see myself, 34 years old, once-strong, ambitious woman, now struggling to get through each day, living with a chronic illness that has changed every part of my life.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
For me the worst of it is being tired and getting headaches. Everything they give me to alleviate the headaches makes me _more tired.

_DSD already lost one mother so I'm sure chronic illness is an added worry for her.

Before I had this, I was superwoman, now I have kids and no energy and it's so frustrating. I'm lucky that dh is able to make a living and work as much as he does, and that I can be self employed and work at my own pace. But it's so aggravating to know I used to be so much more _able.

_ Now it's a major victory if the house is reasonably clean, everyone gets fed, I make a few bucks and it's a _no headache_ day.

I have noticed that stress really aggravates it. When I had a job where there was a lot of bullying and mobbing behavior I had neck, shoulder and back pain that miraculously went away once I was out of there.

I'm sorry about the headaches, I get them on occasion too. And I completly understand the feeling of needing to look back at the life you had then compare it to the life you have now.

I'm still doing that two years later, but then again it seems it takes me longer then most people to deal with stuff.


----------



## bigeyes (Apr 5, 2007)

Yeah.

And the worst part of it is, it's invisible. So people think you're faking, or lying, or crazy.

Or you just need antidepressants.

Or a kick in the ass.

Or sex.

Or a better diet.

Or whatever else they think works wonders, because they have no idea what it is like to have an invisible disorder.

Anyone else have the chemical sensitivity that goes along with it, or am I just lucky in that respect too?







Sometimes I feel like I should never leave the house at all.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Alisteal* 
I'm a fibro mom. I'm either always in pain one way or another or just exhausted all the time. I also have super severe anxiety that is almost crippling at times.

My dh works nights. So all the time I'm with the girls in the day he's here too (even though he may be asleep)

Hugs to you, I hate the anxiety and depression the most.


----------



## bigeyes (Apr 5, 2007)

I feel better just knowing I'm not the only one.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
Yeah.

And the worst part of it is, it's invisible. So people think you're faking, or lying, or crazy.

Or you just need antidepressants.

Or a kick in the ass.

Or sex.

Or a better diet.

Or whatever else they think works wonders, because they have no idea what it is like to have an invisible disorder.

Anyone else have the chemical sensitivity that goes along with it, or am I just lucky in that respect too?







Sometimes I feel like I should never leave the house at all.

I don't seem to have the chemical sensitivity but I do have a gluten intolerence.

It is mind boggling what effects me some days and others not at all.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
I wrote this not too long ago about this very same feeling:

Chronic Illness

You see me and I look normal.

You see me as your colleague. Some days I greet you with a smile. Some days I look tired. Usually I am buried in work just like you, most of the time these days I just like to be alone. Some days I'm not there when I should be. Many days may go by and you begin to ask about me, why is she always absent, why does she call in sick, she doesn't look sick, she looked fine the other day&#8230;

You see me as a patient. I look fine, my tests are normal, and my illness has no name that you have found. You're tired of looking. You're tired of hearing about my symptoms. The endless battery of tests tells the story of a physically normal woman, the woman tells a different story. You offer me anti-depressants and benzodiazepines; you tell me I'm depressed.
You're right about one thing: I am depressed.

You see me as your mother. You know the look I get in public these days when I need desperately to go home and lay down. You used to argue but now you look at me and say, "Mommy, we can go home, I know you feel bad." You don't blame me for not being as good as the other mommies.

You see me as your partner. You watch me struggle and feel helpless. You hold me closely as you slowly adapt to the person I have become. You encourage me, you listen to me cry, you accompany me when I ask you to, you know when its time to go home. You look me in the eyes and tell me you believe me.

I see myself, 34 years old, once-strong, ambitious woman, now struggling to get through each day, living with a chronic illness that has changed every part of my life.









This cuts right to the heart of it. I know I've been having a hard day, but really you hit the nail on the head.


----------



## supakitty (Mar 6, 2002)

Group hugs, mamas. We all have each other.

-Laura


----------



## Brigianna (Mar 13, 2006)

Me, me! Just diagnosed. Will return later. Must eat dinner now.

ETA: I'm so very grateful to other chronic illness folks who "get it."


----------



## Nature (Mar 12, 2005)

I'm a Fibro mom too with agoraphobia and horrible anxiety.


----------



## Ruthla (Jun 2, 2004)

My oldest understand that I have "low energy days" and "moderate energy days." My little guy, not so much. I get a lot of excuses "it hurts when I pick up my toys" because he's heard me say the exact same thing. I know he's not in physical pain when he does these things, but it's hard to stress to him the difference.

I had a lot of help with DS when he was younger. I put him in preschool at age 2.75 because I couldn't run around and play with him the way he needed to- he'd spend WAY too much time in front of the TV because I lacked the energy to do much more with him.

My middle DD understands my physical limitations, but can't always "pick up the slack" with basic household routines. I suspect she may have FMS as well, so how can I "not beleive her" when she can't do something when I understand what it's like to not be able to do something (and not be believed) so how can I do that to her?

I just got approved for SSI, which means I can definitely afford to be a SAHM in the long term, which certainly helps my kids.


----------



## North_Of_60 (May 30, 2006)

I'm a fibro-mom. I was in a car accident that left me with back and shoulder problems. I was diagnosed about 3 years ago. It was huge relief to know "something" was going on.. even if you can't see it.


----------



## tireesix (Apr 27, 2006)

I have suspected fibro, it comes in waves and am in a bad patch at the mo. I also have EDS 3 (apparently there can be a connection between the two).

I feel my children are shortchanged too, especially as DH also has health issues. HOWEVER, it looks as though I have passed EDS onto both my children so at least I know, that if they go on to suffer in the future, at least they have someone who understands.


----------



## kblackstone444 (Jun 17, 2007)

My Mother has it. She's had it since I was 12 or 13. My brother is showing some mild symptoms. Is it hereditary?


----------



## bigeyes (Apr 5, 2007)

I don't know. I have it and my mom has it. I had one doctor tell me that only women really get it and that the men have been misdiagnosed, but I have no way of knowing what is true.

Some of the women in my thyroid group swear all it is is undertreated hypothyroidism.

Whatever it is, or however we get it, it sucks.


----------



## Nature (Mar 12, 2005)

Quote:


Originally Posted by *bigeyes* 
I don't know. I have it and my mom has it. I had one doctor tell me that only women really get it and that the men have been misdiagnosed, but I have no way of knowing what is true.

Some of the women in my thyroid group swear all it is is undertreated hypothyroidism.

Whatever it is, or however we get it, it sucks.

I'm not sure I agree with that one.. since at one point I was on thyroid medication for an under active thyroid, and it has since corrected itself. I'm not medicated for it, and I test within the normal range every time. Yet still I have FMS.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Nature* 
I'm not sure I agree with that one.. since at one point I was on thyroid medication for an under active thyroid, and it has since corrected itself. I'm not medicated for it, and I test within the normal range every time. Yet still I have FMS.









Yeah, I'm not so sure about that one either.

Of course, I also disagree with what is 'normal' for thyroid and the TSH test is a bunch of hooey, but that is another thread.


----------



## *~Member~* (Feb 20, 2006)

Quote:


Originally Posted by *Nature* 
I'm a Fibro mom too with agoraphobia and horrible anxiety.










I also have agoraphobia. Me loosing Calypso has made it worse too because now I'm petrified if I leave my house it's going to burn down and I'll loose EVERYTHING that belonged to my angel


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Alisteal* 
I also have agoraphobia. Me loosing Calypso has made it worse too because now I'm petrified if I leave my house it's going to burn down and I'll loose EVERYTHING that belonged to my angel










you've had more than your share of bad luck.







I think not wanting to leave the house goes along with fibro to a certain degree anyway, though I wouldn't say I'm agoraphobic. I'd just rather be home than deal with traffic or any other irritations.


----------



## spiderdust (Oct 3, 2005)

Haven't finished reading the thread yet, but I can already tell that this is the tribe for me! I've only been officially diagnosed with fibro for 2 years, but I've likely had it for 15+ years.


----------



## *~Member~* (Feb 20, 2006)

Quote:


Originally Posted by *bigeyes* 








you've had more than your share of bad luck.







I think not wanting to leave the house goes along with fibro to a certain degree anyway, though I wouldn't say I'm agoraphobic. I'd just rather be home than deal with traffic or any other irritations.

Yeah I was diagnosed with my anxiety and agoraphibia before my fibro really started flaring up. So I think just everything is playing off of everything else making it worse. I told dh I wanted to get a firesafe to put Calypso's very very important things in just in case


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Alisteal* 
Yeah I was diagnosed with my anxiety and agoraphibia before my fibro really started flaring up. So I think just everything is playing off of everything else making it worse. I told dh I wanted to get a firesafe to put Calypso's very very important things in just in case

you should. I think it would help ease your mind about it.

I think finding solutions to these things helps give us back a sense of control. For me that's one of the worst things about this, losing control of my life, and not being able to just do everything like I always did before.


----------



## pantufla (Jun 7, 2007)

I really wish I could be the energetic, happy, relaxed Mom my boys need me to be.







: I spend a lot of time in front of the computer or the tv, I just don't have enough energy to do much else. I do sometimes feel better if I actually get up and get out of the house... But a lot of the time I get out and just want to go home and take a nap. I am being treated for an underactive thyroid and PPD.


----------



## Nature (Mar 12, 2005)

Quote:


Originally Posted by *Alisteal* 
Yeah I was diagnosed with my anxiety and agoraphibia before my fibro really started flaring up. So I think just everything is playing off of everything else making it worse. I told dh I wanted to get a firesafe to put Calypso's very very important things in just in case











I too was dx'd with agoraphobia and panic and anxiety disorder before being dx'd with Fibro. And I have the same anxious thoughts about losing my memories in a fire. Getting a safebox didn't alleviate that. I think the only thing that would is getting doubles of EVERYTHING and putting it in a safe deposit box... but I know I couldn't afford that. And I'm not sure they have one big enough.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Nature* 









I too was dx'd with agoraphobia and panic and anxiety disorder before being dx'd with Fibro. And I have the same anxious thoughts about losing my memories in a fire. Getting a safebox didn't alleviate that. I think the only thing that would is getting doubles of EVERYTHING and putting it in a safe deposit box... but I know I couldn't afford that. And I'm not sure they have one big enough.









Nooooooooooooooo!!!

We have to fly back to the mainland for a wedding, I hope I don't worry the whole time.


----------



## *~Member~* (Feb 20, 2006)

Quote:


Originally Posted by *Nature* 









I too was dx'd with agoraphobia and panic and anxiety disorder before being dx'd with Fibro. And I have the same anxious thoughts about losing my memories in a fire. Getting a safebox didn't alleviate that. I think the only thing that would is getting doubles of EVERYTHING and putting it in a safe deposit box... but I know I couldn't afford that. And I'm not sure they have one big enough.









It's funny people always say don't go back into the house after you get out. In my case. I'm getting the kids out and then getting ALL the pictures out and all Calypso's stuff.


----------



## Nature (Mar 12, 2005)

Quote:


Originally Posted by *Alisteal* 
It's funny people always say don't go back into the house after you get out. In my case. I'm getting the kids out and then getting ALL the pictures out and all Calypso's stuff.

I often think about that as I'm falling asleep at night. Exactly what I'd go back in after and what I'd grab. I've got it down to two extra trips with pictures boxes and my hard drive. (that has 4 years worth of pictures on it.)
I probably should pare it down a bit huh?









Ugh. It seriously causes a lot of anxiety thinking about it.


----------



## scsigrl (Oct 22, 2006)

I have been DXed with fibro...but I don't buy it.

Not sure if that's because I don't want to or I don't believe it....








:


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *spiderdust* 
Haven't finished reading the thread yet, but I can already tell that this is the tribe for me! I've only been officially diagnosed with fibro for 2 years, but I've likely had it for 15+ years.

I'm pretty sure I had it for a long time before being diagnosed too. I fought it for a long time with caffeine and cigarettes, then when I quit smoking I crashed so hard it wasn't funny. I thought _everybody_ had to do _something_ to keep going.

I can remember drinking coffee round the clock and still not being able to stay awake or think straight.

Does anyone else take anything to help with sleep? What works for you with the least side effects? I'm not liking what I'm taking but it's helped with the headaches and I'm actually getting some sleep, but I keep hoping there is a better solution available.


----------



## *~Member~* (Feb 20, 2006)

Quote:


Originally Posted by *Nature* 
I often think about that as I'm falling asleep at night. Exactly what I'd go back in after and what I'd grab. I've got it down to two extra trips with pictures boxes and my hard drive. (that has 4 years worth of pictures on it.)
I probably should pare it down a bit huh?









Ugh. It seriously causes a lot of anxiety thinking about it.

I understand 100%. We have Calypso's memorial case by the front door, so I can get the kids out and then grab armfulls of Calypso's stuff and run it out


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *harleyhalfmoon* 
My Mother has it. She's had it since I was 12 or 13. My brother is showing some mild symptoms. Is it hereditary?


I have read, and of course do not have the source that people with Fibro have a 50% chance of passing it on to their children. I have also read that the chances may be higher in women, but I've read doctors are not sure if this because women are more apt to come forward with their symptoms or if more women just plain get it.

Many women get it after childbirth, PPD, or other hormonal changes. So I always think about hormones.

Hugs to everyone, I hope your all doing well today. I know this damp weather is driving my muscles crazy.


----------



## supakitty (Mar 6, 2002)

How many people here first thought (or still think) they have something like lupus, rheumatoid arthritis, polymyositis, multiple sclerosis, myasthenia gravis, etc...?

-Laura


----------



## scsigrl (Oct 22, 2006)

Quote:


Originally Posted by *supakitty* 
How many people here first thought (or still think) they have something like lupus, rheumatoid arthritis, polymyositis, multiple sclerosis, myasthenia gravis, etc...?

-Laura

me me me


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *supakitty* 
How many people here first thought (or still think) they have something like lupus, rheumatoid arthritis, polymyositis, multiple sclerosis, myasthenia gravis, etc...?

-Laura

chronic fatigue syndrome was my first thought


----------



## supakitty (Mar 6, 2002)

What other things specifically have people considered in their own differential diagnosis?


----------



## *~Member~* (Feb 20, 2006)

Quote:


Originally Posted by *supakitty* 
How many people here first thought (or still think) they have something like lupus, rheumatoid arthritis, polymyositis, multiple sclerosis, myasthenia gravis, etc...?

-Laura

Me I was tested and had MRI's to rule out MS.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
I have read, and of course do not have the source that people with Fibro have a 50% chance of passing it on to their children. I have also read that the chances may be higher in women, but I've read doctors are not sure if this because women are more apt to come forward with their symptoms or if more women just plain get it.

Which is why I'm so worried about my 11yo. The child who's so much like me. The child who's sensitive to chemicals, who has times when she has muscle pain for no apparent reason, gets "unnnaturally" tired at times, who gets easily overstimulated by too much noise or movement (yet at other times she's hyper and can't stop bouncing.)

One of the reasons she's being HSed is because there were times when a regular school schedaul simply exhausted her and then she was tired and overwhelmed and overstimulated and couldn't learn anything. Now, we schedual no more than 2 activities a week and have a lot of "down time" which both of us need.

I'm kind of scared for her future if she does have FMS. Even with SSI and child support, I will NEVER be able to move out of my parents' home. I don't have enough income to live independently in this area.

Quote:


Originally Posted by *supakitty* 
What other things specifically have people considered in their own differential diagnosis?

In my own, nothing. Although I did deal with depression for years and then, after my FMS diagnosis, I realized that I wasn't depressed anymore. I was no longer trying to do more than I was capable of and wondering what was wrong with me. I realized that most of my fatigue and brain fog was physical, not mental.

My doctors, however, did a full workup with lab tests and stuff to rule out Lyme's, Lupus, RA, etc. After about a year's worth of consistent results, the dr felt he could comfortably say I only have FMS.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
Which is why I'm so worried about my 11yo. The child who's so much like me. The child who's sensitive to chemicals, who has times when she has muscle pain for no apparent reason, gets "unnnaturally" tired at times, who gets easily overstimulated by too much noise or movement (yet at other times she's hyper and can't stop bouncing.)

One of the reasons she's being HSed is because there were times when a regular school schedaul simply exhausted her and then she was tired and overwhelmed and overstimulated and couldn't learn anything. Now, we schedual no more than 2 activities a week and have a lot of "down time" which both of us need.

I'm kind of scared for her future if she does have FMS. Even with SSI and child support, I will NEVER be able to move out of my parents' home. I don't have enough income to live independently in this area.

In my own, nothing. Although I did deal with depression for years and then, after my FMS diagnosis, I realized that I wasn't depressed anymore. I was no longer trying to do more than I was capable of and wondering what was wrong with me. I realized that most of my fatigue and brain fog was physical, not mental.

My doctors, however, did a full workup with lab tests and stuff to rule out Lyme's, Lupus, RA, etc. After about a year's worth of consistent results, the dr felt he could comfortably say I only have FMS.

Hugs to you Ruthla. I'm sorry your watching your daughter go through this. I hope that as she grows, more discoveries are made that will not only figure out the cause of the symptoms but also ways to prevent them.
She is lucky to have such an insightful, attentive mom.

My dr. still will do MRI's every 2 years as MS runs in my family and I have had symptoms that don't always fit the Fibro mold.


----------



## Jeanne D'Arc (Apr 7, 2007)

Hi joining!







:

Quote:

chronic fatigue syndrome was my first thought

CFS and Fibro are basically the same illness, they have all the
same symptoms, only difference is in Fibro pain is the main
symptom and in CFS fatigue is the main symptom.

Btw I loved the Chronic Illness poem , I about cried!

I have only been ill with this "thing" for a few years. And yah,
it happened right after I gave birth. Course, now I have confirmed
that I am infected with Mycoplasma, which is interesting because
apparently most people with CFS and Fibro test positive for Mycoplasmas,
for yeast/candida, and scarily enough Lyme. I have tested positive
for Mycoplasmas and Candida, and I will be getting a Lyme test done soon.
Don't waste your time with the typical doctor's office version of the
western blot, its really inaccurate. I am probably going to order a kit
from Igenex. I was tested positive for Candida and Mycoplasma via
live blood microscopy. So it is reassuring to know its not just some
"mystery " illness with no cause.

The illness itself is almost always caused by an intruder which
becomes systemic throughout the body which either causes or
results from an underactive/overactive immune system.

Fibro and the muscle pain that accompanies it is extremely
suggestive of spirochetes or mycoplasmas, as they infect
the muscle tissue.

I am currently working on healing myself. I truly believe I also
have Lyme but wont know for a while. I am currently on
Mannatech supps, Salt C regimen and have just started
Raw foods. We are also saving up for rife equipment.
It is my belief that the body can be healed, it's just sometimes
harder than others. You get rid of the intruder, your body
is free.

The worst thing for me besides the tiredness is the hair loss!!
Omg i swear if i lose anymore hair i will be bald. In this case
it is vanity getting the best of me. Thinning hair is just so
gross looking.


----------



## supakitty (Mar 6, 2002)

Another question I have is how have people managed pregnancy with this diagnosis, was it worse, better, the same? I'm also having these feelings about not being able to care for a newborn when I am struggling so much right now.

-Laura


----------



## bigeyes (Apr 5, 2007)

Mine started after pregnancy, so I couldn't tell you. It was very difficult, especially with a child who has always been as energetic as I _used to be._


----------



## Brigianna (Mar 13, 2006)

Quote:


Originally Posted by *bigeyes* 
Are there any of you out there?
How does it affect your parenting?

I feel like I have limited energy for my children and they are shortchanged in so many ways because I just can't do all the things other moms can.

Do you talk to your children about it, and do they have an understanding of just how your illness limits you? Do they understand the difference between _not wanting to do things_ and _being unable to do things?_

I don't know. I haven't really discussed it with the kids. My oldest is 7 and could probably understand, but I don't think the younger ones could. I feel guilty that I can't run and play like other moms, or even babywear as much. I try to make up for it in other ways.

Quote:


Originally Posted by *supakitty* 
How many people here first thought (or still think) they have something like lupus, rheumatoid arthritis, polymyositis, multiple sclerosis, myasthenia gravis, etc...?

-Laura

I believed, and still do, that I have something caused by chemical exposure. I can't prove it, and of course my former employer vehemently denies it, but I think it's too coincidental that I took this job and traveled around and got kidnapped and had all kinds of bad things happen to me and got exposed to all kinds of chemicals, and then _all of a sudden_ I start having this chronic pain and fatigue? I don't think so.

Now my questions:
-What, if any, prescription drugs are y'all taking for FMS? Are they effective? What kind of side effects?
-Does anyone else have FMS in addition to something else that causes sensory issues (like autism, SPD, ADHD... not sure what else causes sensory issues...) and have trouble knowing whether certain sensory symptoms are FMS or your other thing?
-How has your spouse/partner reacted to your condition? What about extended family and inlaws? Friends?
-My fatigue has gotten progressively worse in recent months. My doctor says this is not typical. How many people here have this issue?


----------



## supakitty (Mar 6, 2002)

Re: Fatigue

It occurred to me recently that when I say I'm tired that I am so completely exhausted and fatigued that I could fall asleep while sitting in a chair listening to someone talk while the room spins, my head feels foggy and I can't focus my eyes in one place for very long.

That type of fatigue feeds my anxiety. It makes me feel "abnormal". The worst feeling I carry around is this feeling like it's a secret that I have to keep from others and try and pretend to be "normal". My worst days are the ones like that.

Most notably right now, I am having such an incredible bout of muscle fatigue and pain that I have been in bed for 7 days and I am off on medical leave from work.

-Laura


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Brigianna* 

I believed, and still do, that I have something caused by chemical exposure. I can't prove it, and of course my former employer vehemently denies it, but I think it's too coincidental that I took this job and traveled around and got kidnapped and had all kinds of bad things happen to me and got exposed to all kinds of chemicals, and then _all of a sudden_ I start having this chronic pain and fatigue? I don't think so.

I believe it is caused and aggravated by chemicals, and the endocrine disruptors in our food, air, and water.

Quote:


Originally Posted by *Brigianna* 
Now my questions:
-What, if any, prescription drugs are y'all taking for FMS? Are they effective? What kind of side effects?

I have been taking amitriptyline to help me sleep and prevent migraines. It makes me have cottonmouth and have to pee all the time. It also makes me tired as hell, which I don't need since I'm already tired as hell. I'm also taking topamax which makes me tired and stupid, symptoms I _already_ had.

The things I take to help one thing end up making another worse. I hate it, but I can't function with the almost daily headaches, so I'll take more fatigue and brain fog over sheer agony, but it's a lousy choice. I keep hoping there will be a better choice someday. When I get a headache I take relpax which can make me sleepy or dizzy, but again, it's better than the alternative.

Quote:


Originally Posted by *Brigianna* 
-Does anyone else have FMS in addition to something else that causes sensory issues (like autism, SPD, ADHD... not sure what else causes sensory issues...) and have trouble knowing whether certain sensory symptoms are FMS or your other thing?

I am easily startled to the point where it's a PTSD sort of thing. I have adrenal fatigue which is related to fibro and hypothyroidism so it's hard to know where one condition starts and the other one ends.

Quote:


Originally Posted by *Brigianna* 
-How has your spouse/partner reacted to your condition? What about extended family and inlaws? Friends?

Family members often assume i'm a malingerer. Dh gets annoyed at my chemical sensitivities sometimes but is otherwise usually supportive. Friends are all over the map, depending on their own health issues.

Quote:


Originally Posted by *Brigianna* 
-My fatigue has gotten progressively worse in recent months. My doctor says this is not typical. How many people here have this issue?

My health goes up and down all the time, I have not been able to figure out much of anything that causes the changes other than stress makes it worse.


----------



## supakitty (Mar 6, 2002)

Re: Friends.

That's an interesting thing. The ones who were there at first wonder why you haven't been able to shake it off and have grown bored with me not being able to do the things I used to do. The needy ones who take and don't give were the first to go (thank god!) and some who I wouldn't have expected have distanced themselves. I can't believe how judgmental some people have been "Oh THAT again" type of attitude, like my illness is a big inconvenience to them. Others however have emerged as people who are strong, loving and understanding and just want to be your friend because they like your company and enjoy the time you can spend.

Family is everywhere from overwhelmed with worry (my loving father) to passive denial and mild annoyance with the failure to find a diagnosis (mom) and everything in between.

I think people at work have been the worst and most judgemental, of course they are all in the medical system!

-Laura


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *supakitty* 
Re: Friends.

That's an interesting thing. The ones who were there at first wonder why you haven't been able to shake it off and have grown bored with me not being able to do the things I used to do. The needy ones who take and don't give were the first to go (thank god!) and some who I wouldn't have expected have distanced themselves. I can't believe how judgmental some people have been "Oh THAT again" type of attitude, like my illness is a big inconvenience to them. Others however have emerged as people who are strong, loving and understanding and just want to be your friend because they like your company and enjoy the time you can spend.

God, how true is that? The users were definitely the first to go, because I just don't have the energy to deal with them any more. And isn't it interesting how the same people who lean on you the most are the ones who accuse you of being whiny and unable to _snap out of it?_ Is it irony, or what exactly?

Quote:


Originally Posted by *supakitty* 
I think people at work have been the worst and most judgemental, of course they are all in the medical system!


Is there any way that I can offer _my_ opinion of the medical community without violating the UA? Nope.









Suffice it to say that the more I learn about the FDA, pharmaceutical reps and drug companies, and the way medical schools and doctors get their funding, the more convinced I am _the FDA is a bought and paid for whore,_ and the medical community is only interested in keeping us sick and taking our money. If it's at all possible, I want that statement on my tombstone, btw. _The FDA is a bought and paid for whore._ I'm sure it isn't grammatically correct, but it just doesn't have the same impact when you re-phrase it.

Yeesh. Is it any wonder I'm bitchy?


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Brigianna* 
I don't know. I haven't really discussed it with the kids. My oldest is 7 and could probably understand, but I don't think the younger ones could. I feel guilty that I can't run and play like other moms, or even babywear as much. I try to make up for it in other ways.

I believed, and still do, that I have something caused by chemical exposure. I can't prove it, and of course my former employer vehemently denies it, but I think it's too coincidental that I took this job and traveled around and got kidnapped and had all kinds of bad things happen to me and got exposed to all kinds of chemicals, and then _all of a sudden_ I start having this chronic pain and fatigue? I don't think so.

Now my questions:
-What, if any, prescription drugs are y'all taking for FMS? Are they effective? What kind of side effects?
-Does anyone else have FMS in addition to something else that causes sensory issues (like autism, SPD, ADHD... not sure what else causes sensory issues...) and have trouble knowing whether certain sensory symptoms are FMS or your other thing?
-How has your spouse/partner reacted to your condition? What about extended family and inlaws? Friends?
-My fatigue has gotten progressively worse in recent months. My doctor says this is not typical. How many people here have this issue?

Hi Brigianna.
I take a number of perscription drugs, more then I ever thought I would. On a daily basis I take an anti-anxiety med, a muscle relaxer, and some type of over the counter pain med. On bad pain days I take a prescription extra strength anti-flammatory(sp?), or a pain med which is a narcotic (which I try my best to stay away from as the muscle relaxer is already a narcotic and I am not a fan).

I don't have any other diagnosed sensory issues, but since I was a small child have had issues that would now be diagnosed as something.

My dh has been great, life is hard that is for sure and he has picked up a lot of extra slack. But he is so loving and supportive. I am very lucky in this respect. My family as been very supportive in every way possible. My grandmother has MS and I think they are all just holding their breath praying it does not turn out to be MS too. (I have a very small family). My friends are also all over the map, I have not lost any friends but I have recently found that a couple of my friendships are not doing so well. I think they thought this was something that would go away and are a bit annoyed that it has not. I no longer have the energy to do some of the things we used to do together such as go on long hikes. I had one friend who is normally not all that strong but has turned out to quite literally be my pillar of strength, she is the one I call crying, and she is the one who supports me with all her heart.

I have ups and downs with my fibro I had a time when it was so bad I was exhausted more and more everyday until I could not walk. My legs started giving out on me. They have not stopped that little number since. My doctor is very layed back about the whole thing, sometimes to my annoyance. My next stop is to see a neurologist and take pain management classes.
I am not looking forward to that doctor appointment.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
Another question I have is how have people managed pregnancy with this diagnosis, was it worse, better, the same? I'm also having these feelings about not being able to care for a newborn when I am struggling so much right now.

-Laura


Another one for not being diagnosed until after I gave birth to both my sons.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Jeanne D'Arc* 

Hi joining!







:

CFS and Fibro are basically the same illness, they have all the
same symptoms, only difference is in Fibro pain is the main
symptom and in CFS fatigue is the main symptom.

Btw I loved the Chronic Illness poem , I about cried!

I have only been ill with this "thing" for a few years. And yah,
it happened right after I gave birth. Course, now I have confirmed
that I am infected with Mycoplasma, which is interesting because
apparently most people with CFS and Fibro test positive for Mycoplasmas,
for yeast/candida, and scarily enough Lyme. I have tested positive
for Mycoplasmas and Candida, and I will be getting a Lyme test done soon.
Don't waste your time with the typical doctor's office version of the
western blot, its really inaccurate. I am probably going to order a kit
from Igenex. I was tested positive for Candida and Mycoplasma via
live blood microscopy. So it is reassuring to know its not just some
"mystery " illness with no cause.

The illness itself is almost always caused by an intruder which
becomes systemic throughout the body which either causes or
results from an underactive/overactive immune system.

Fibro and the muscle pain that accompanies it is extremely
suggestive of spirochetes or mycoplasmas, as they infect
the muscle tissue.

I am currently working on healing myself. I truly believe I also
have Lyme but wont know for a while. I am currently on
Mannatech supps, Salt C regimen and have just started
Raw foods. We are also saving up for rife equipment.
It is my belief that the body can be healed, it's just sometimes
harder than others. You get rid of the intruder, your body
is free.

The worst thing for me besides the tiredness is the hair loss!!
Omg i swear if i lose anymore hair i will be bald. In this case
it is vanity getting the best of me. Thinning hair is just so
gross looking.

Thanks for this I have to look into it.


----------



## Nature (Mar 12, 2005)

Quote:


Originally Posted by *Blooming* 
Another one for not being diagnosed until after I gave birth to both my sons.











I wasn't diagnosed until after my three girls were born.


----------



## spiderdust (Oct 3, 2005)

Quote:


Originally Posted by *bigeyes* 
I'm pretty sure I had it for a long time before being diagnosed too. I fought it for a long time with caffeine and cigarettes, then when I quit smoking I crashed so hard it wasn't funny. I thought _everybody_ had to do _something_ to keep going.

OMG! That sounds so much like me!

I never put that together before, that I was actually self-medicating. It was a vicious cycle though; I was wound up so tight that I couldn't sleep, then needed more stuff later on to keep me awake so I could work and do at least a portion of what I needed to do, etc.

My sleeping issues go WAAAAAAAY back. I still have tons of trouble sleeping, even though I no longer smoke and cut back on caffeine. A light on in the hallway, light reflecting from a cellphone, light from the streetlamp outside -- all of these will keep me awake. Even a small amount of noise will keep me up too (forget about trying to sleep on a plane).

I've noticed that my daughter has the same insomnia issues that I had when I was her age (my parents didn't take them seriously). She's still somewhat afraid of the dark so she wants to have a nightlight on, yet it keeps her up for hours. I'm not sure what to do for her.


----------



## bigeyes (Apr 5, 2007)

I just read in my adrenal fatigue group that cigarettes increase your cortisol production, and one of the things we do to fight adrenal fatigue is take cortisol or cortisonem because it helps our thyroid meds work better. So apparently it's 'normal' for us to crash when we quit smoking.

No wonder I always felt better as a smoker, despite all the _you'd feel so much better if you'd just quit_ comments.







: I always thought that was strange.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *bigeyes* 
I just read in my adrenal fatigue group that cigarettes increase your cortisol production, and one of the things we do to fight adrenal fatigue is take cortisol or cortisonem because it helps our thyroid meds work better. So apparently it's 'normal' for us to crash when we quit smoking.

No wonder I always felt better as a smoker, despite all the _you'd feel so much better if you'd just quit_ comments.







: I always thought that was strange.

Are you suggesting that cigarettes do have a medicinal value for fibro patients? I'm not suggesting we all take up smoking, or that the risks outweigh the benefits, but this is the first I've ever heard of tobacco actually (potentially) having benefits.

Spiderdust- melatonin production is hampered by light. If you and/or your DD have trouble making enough melatonin, then a melatonin supplement may solve the problem. You may want to try something like 5-htp first as it's a precursur to making seratonin, and seratonin gets broken down into melatonin. By increasing the seratonin, you're giving your body a chance to make what it needs, when it needs it, instead of JUST replacing the melatonin that isnt' being made naturally.


----------



## *~Member~* (Feb 20, 2006)

I was diagnosed after the birth of my first daughter. She was about 1 year old when I was dx


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Ruthla* 
Are you suggesting that cigarettes do have a medicinal value for fibro patients? I'm not suggesting we all take up smoking, or that the risks outweigh the benefits, but this is the first I've ever heard of tobacco actually (potentially) having benefits.

Sort of, but yeah, I'm not about to start again. It really explains to me the difference in the way I felt when I smoked. It's so annoying the way every single thing that helps one problem causes others.


----------



## supakitty (Mar 6, 2002)

I'm seeing my rheumatologist today after being on medical leave for a week and stuck in bed with pain and weakness. I hope he comes up with something. I still don't actually have any type of diagnosis. My biggest fear right now is myasthenia gravis. I hate how these symptoms seen to fit all the big, bad, scary diseases.

-Laura


----------



## Jeanne D'Arc (Apr 7, 2007)

Myasthenia Gravis "usually" starts in the face. And then progresses
to the rest of the body. If you have not lost facial muscle control
I doubt its Myasthenia.


----------



## supakitty (Mar 6, 2002)

Re: Myasthenia Gravis

Believe me, I don't want it. I have some facial/trigeminal nerve dysfunction, I have ocular symptoms that make it hard to focus my eyes and make my right eye droop at the end of a day. I am going to request a screening for the binding anti-acetylcholine antibodies and rule this disorder out. It's just the process of elimination I guess. I hate the way it feeds my anxiety though.

Here's a question, does anyone here have fibromyalgia and not have anxiety and/or depression? Mine seems to arise from the feeling of being sick and having no idea about what to do for it and if it will ever go away.

-Laura


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
Re: Myasthenia Gravis

Believe me, I don't want it. I have some facial/trigeminal nerve dysfunction, I have ocular symptoms that make it hard to focus my eyes and make my right eye droop at the end of a day. I am going to request a screening for the binding anti-acetylcholine antibodies and rule this disorder out. It's just the process of elimination I guess. I hate the way it feeds my anxiety though.

Here's a question, does anyone here have fibromyalgia and not have anxiety and/or depression? Mine seems to arise from the feeling of being sick and having no idea about what to do for it and if it will ever go away.

-Laura

Nope, I have both anxiety and depression. I hope your appointment goes well and that it is not Myasthenia Gravis.


----------



## Jeanne D'Arc (Apr 7, 2007)

Quote:

Re: Myasthenia Gravis

Believe me, I don't want it. I have some facial/trigeminal nerve dysfunction, I have ocular symptoms that make it hard to focus my eyes and make my right eye droop at the end of a day. I am going to request a screening for the binding anti-acetylcholine antibodies and rule this disorder out. It's just the process of elimination I guess. I hate the way it feeds my anxiety though.

Here's a question, does anyone here have fibromyalgia and not have anxiety and/or depression? Mine seems to arise from the feeling of being sick and having no idea about what to do for it and if it will ever go away.

-Laura
Please let us know how it goes w/ your appointment. I'm sorry
about the probs your having.

On the subject of Anxiety and depression, I used to have panic attacks
really badly, i saw a naturopath who prescribed some high potency
B complex glandulars, now i usually only have them if I consume
caffiene, otherwise almost never. I would take it back in a heartbeat
than what I am dealing with now...

I used to have very bad MS -type symptoms that went away and
then reappeared as this. Like I said I truly believe that I have Lyme,
i will be ordering my Lyme kit soon. I highly recommend everyone
w/ Chronic Fatigue,Lupus, Fibromyalgia, Multiple Schlerosis and
even Lou Gherigs disease to get tested for Spirochetes by a lab that
specializes in Lyme. I will report on what my results show.

i hope all is well and the test comes back a strong negative.


----------



## Ruthla (Jun 2, 2004)

I just feel like crying today.

I'm just so tired. I got DD up around 10 this morning (a huge battle with her!) for a HS activity. It's in a new location, not a place I've been to before. I used Mapquest for directions. It took me 20 minutes to drive most of the way there. Then I spend 45+ minutes circling around the town trying to find the damn street I needed to turn on. Finally, I gave up and drove the 20 minutes home. So that was nearly an hour and a half in the car with a full bladder. I'm completely wiped out and we got nothing of value accomplished today!

Now DD is bored and wants my help making doll clothes and I just can't do it. I'm too tired to think straight, but if I can't really nap when I'm supposed to be doing stuff with her.

Forget about doing math or Hebrew or decluttering the house so we could actually work at her desk. Oh, and I'll need to make dinner at some point this afternoon. And I need to call some doctors and go food shopping and get vaccine records for DD1 (stupid school lost them) and I could have done much of that today if I hadn't spent close to 2 hours driving around doing nothing.


----------



## bigeyes (Apr 5, 2007)

I have a headache, dsd and dh are both home and I just want everyone to get the hell out of the house.







:

Yesterday both kids drove me completely insane. They antagonized each other to the point where I could not work at all. While I was on the phone with a client they made so much noise I had to stop working, then they went outside and onto the neighbor's property where dsd managed to get her leg stuck in a crack in the lava. DS and I spent about 20 minutes extricating her and now she has a nasty sprain and all of us are scratched up. It's a wonder she didn't break her leg. We literally had to lift her and lean her back so she was in the right position to ease herself back out the way she went in. If she had been alone she would have stayed there indefinitely.

I am a nervous wreck and I know kids don't understand, but sometimes I wish dh did.

Does anyone else find that the least bit of drama just sends you through the roof? I swear it takes me days to recover from any extra stress.


----------



## Blooming (Feb 16, 2006)

Sending you both hugs. I know what you mean about the least amount of stress sending you over the edge. It happens to me too, and then dh looks at me like "Really what's the big deal?" And I wish I could tell him but I don't know.


----------



## bigeyes (Apr 5, 2007)

exactly. It's like you know _rationally_ that it isn't such a big deal, but your body responds in such a way that _it is_ a big deal.


----------



## Ruthla (Jun 2, 2004)

Yeah, like spending 1.5 hours in the car instead of 25 minutes followed by an hour to walk/sit/hang out and then drive 20 minutes home completely wiped me out today.

But I got a check from Social Security today! I can go re-open my bank account tomorrow, and then I can pay my bills finally!!


----------



## bigeyes (Apr 5, 2007)

woot! what a relief! Dh just got a call for some work tonight, so we got a break too.

If I can get my headache to fade I'm going to try to take some calls and make a few bucks.


----------



## supakitty (Mar 6, 2002)

I want to say, I'm so grateful for this thread. I had an EMG this morning at the neurologists office and it ranks right up there with root canal on the fun-things-to-do list.

-Laura


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
Yeah, like spending 1.5 hours in the car instead of 25 minutes followed by an hour to walk/sit/hang out and then drive 20 minutes home completely wiped me out today.

But I got a check from Social Security today! I can go re-open my bank account tomorrow, and then I can pay my bills finally!!


Congratulations! I know that feeling, it's like holding your breath for way to long and then finally after way to long you get to come up for air. I'm so glad you were approved.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
I want to say, I'm so grateful for this thread. I had an EMG this morning at the neurologists office and it ranks right up there with root canal on the fun-things-to-do list.

-Laura

Laura,

can I ask what an EMG is like? Are you able to get result soon?


----------



## supakitty (Mar 6, 2002)

The EMG is a way for the neurologist to test your muscle strength and nerve conduction. He/She inserts a needle into the muscle and digs around a bit looking for the nerve. Once the nerve is found you contract the muscle and listen to the sound it makes and watch the conduction waves. The interpretation is done at the time of the exam and the results are immediate.

-Laura


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
The EMG is a way for the neurologist to test your muscle strength and nerve conduction. He/She inserts a needle into the muscle and digs around a bit looking for the nerve. Once the nerve is found you contract the muscle and listen to the sound it makes and watch the conduction waves. The interpretation is done at the time of the exam and the results are immediate.

-Laura


Laura,

I'm so sorry you had to got througth this. It sounds like it was ver hard. I hope that the results are good.


----------



## fullofgrace (Nov 26, 2002)

Subbing. I was diagnosed with fibro in 2000. The diagnosis was almost a relief - it explained why I felt so tired, sick and in pain for so long. Symptoms that I would never have associated before finally made sense.

This shift to the cold weather is so painful for me, and add in being sick and its just all the worse.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *fullofgrace* 
Subbing. I was diagnosed with fibro in 2000. The diagnosis was almost a relief - it explained why I felt so tired, sick and in pain for so long. Symptoms that I would never have associated before finally made sense.

This shift to the cold weather is so painful for me, and add in being sick and its just all the worse.

I understand about the cold weather, I live east and the dampness has been killing my bones and joints, I've been speanding as much time as I can in a hot bath with Epsom salts and lavander oil. I think I may even have to go tanning. Even though it is not something I really like to do, for some reason it makes me feel better.


----------



## Ruthla (Jun 2, 2004)

So I got out to the bank today and deposited my SSI check. The check was smaller than I thought it was going to be (around $2,000 rather than $3,000) but I'm not going to worry about it right now. However much they want to give me for back pay is still a heck of a lot more money than I had before.

I just need to be careful and only buy things my family actually needs. There's so much stuff I haen't been able to buy for a long time- new pot holders, new desk chairs, clothes for the kids- it's easy to go crazy and spend it all too fast. I also need to get myself a new mattress. i'm going crazy trying to research a safe mattress- one soft enough to support my sore body but without chemicals that could make me sicker.


----------



## Blooming (Feb 16, 2006)

Rant ahead:

I hate having this stupid illness. I am so sick of it stopping me from doing the things I want to do and making life so not what I wanted it to be. I know, I know things happen to everyone that they don't want, and usually I can keep things in perspective but today I just feel angry, unsupported, and misunderstood. I was mean to my husband who is already doing way to much, which I should be thankful for right? But no instead I feel resentful that he gets to do things I used to love and enjoy. Yuck. If this horrid rain could go away soon that we just great because at this point it has seeped into my bones so much that I don't know if I'll ever have a good day again.


----------



## Ruthla (Jun 2, 2004)




----------



## supakitty (Mar 6, 2002)

I was tested for everything under the sun, I actually came up positive for a problem that explains my symptoms, it truly feels like a miracle. I would urge others to be tested. I have a carnitine deficiency. Here is a link:

http://www.mdausa.org/disease/cd.html


----------



## Jeanne D'Arc (Apr 7, 2007)

I too am getting some tests done very soon.

I will be getting a special Lyme test through Igenex soon.
I am not even bothering with the regular western blot that
you get at the hospital.

Cross your fingers for me!


----------



## zonapellucida (Jul 16, 2004)

I have just been "diagnosed" but I am hoping this is just a residual lymes problem. I am so glad I found this thread becasue I thought I was going nuts. I cannot believe how bad the pain is and how badly my head hurts.

Subbing


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *zonapellucida* 
I have just been "diagnosed" but I am hoping this is just a residual lymes problem. I am so glad I found this thread becasue I thought I was going nuts. I cannot believe how bad the pain is and how badly my head hurts.

Subbing

It's hard to believe how much pain an illness that no one seems to know how to treat or even what causes it can create.


----------



## Ruthla (Jun 2, 2004)

I'm pretty tired and sore today. I can't even pinpoint anything that may have triggered another flare.


----------



## sarahandlily (Jan 14, 2007)

my mom had this. thanks for sharing and starting this thread! sarah


----------



## Ruthla (Jun 2, 2004)

I got a letter from SSI today explaining about my benefits. It seems that my initial check was for 4 months, not 6, which is why it was less than I'd been expected. But the money will still be coming to me- just not right now.


----------



## zonapellucida (Jul 16, 2004)

who diagnosed you all? My lymes came back negative so the positive test I had and the pain I ahve been attributing to it has been a "mistake" Also, is anyone on pain medication on a regular basis. I really feel I need to be simply becasue I am non functioning right now becasue of the pain. 8mg of Klonipin a day, topamax and prozac do nothing for the joints of the muscle pain. Sitting here is torture. And my primary care Dr told me to take Mucinex --HAS NOT BEEN HELPING!!! I am actully to the point where I want to order apin meds off the net as the Dr's don't want to help. I am frustrated, sore, and really just pissed that I feel so damn useless.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *zonapellucida* 
who diagnosed you all? My lymes came back negative so the positive test I had and the pain I ahve been attributing to it has been a "mistake" Also, is anyone on pain medication on a regular basis. I really feel I need to be simply becasue I am non functioning right now becasue of the pain. 8mg of Klonipin a day, topamax and prozac do nothing for the joints of the muscle pain. Sitting here is torture. And my primary care Dr told me to take Mucinex --HAS NOT BEEN HELPING!!! I am actully to the point where I want to order apin meds off the net as the Dr's don't want to help. I am frustrated, sore, and really just pissed that I feel so damn useless.

klonapin gave me headaches, and was never prescribed for my fibro, but rather when I was misdiagnosed years ago. I don't necessarily think prozac is going to help either. I don't see that anything you are taking is for pain, so how is it supposed to help?







:

I would think even an arthritis formula tylenol would be more helpful than what he gave you. My mom actually got oxycontin and other high powered pain meds from her doctor, but I don't remember what kind of doc she sees. My shoulder, back and joint pain usually isn't _that_ bad.

Are you seeing a doctor who specializes in fibro? I was diagnosed by my primary care doc a couple of years ago and then went to a fibro clinic within my plan. Right now mine is characterized mostly by fatigue and migraines, so I see a migraine doc.


----------



## zonapellucida (Jul 16, 2004)

My point exactly!! And the moron doesn't want to see me until January. What type of Dr Specializes? Rhuemetologist? (sp)


----------



## bigeyes (Apr 5, 2007)

I look for alternative practitioners and make phone calls, ask other women in support groups (google fibromyalgia support groups) and just keep reading until I find something. I get most relief from my thyroid information, really.
oIt's frustrating. I think my mom sees a rheumetologist.


----------



## Ruthla (Jun 2, 2004)

Yes, a rheumatologist is the "right" specialist for FMS, even though FMS isn't an autoimmune disease. FMS mimics so many autoimmune diseases that rheumatologists were the ones seeing the fibro patients, diagnosing them, doing the research on fibro, etc.

I see my rheumy about 4X a year now. When I first suspected FMS (from being in a chatroom with somebody with fibro and realizing I had many of the same symptoms) I told my PCP my suspicions and she refered me to the rheumy who diagnosed me on my first visit. I didn't go back for a while because he had nothing to offer me that actually helped. When my insurance changed, I started seeing a different rheumy who did a buttload of tests on me to rule out other illnesses, and after about a year of consistent test results he said I probably JUST have fibro.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
Yes, a rheumatologist is the "right" specialist for FMS, even though FMS isn't an autoimmune disease. FMS mimics so many autoimmune diseases that rheumatologists were the ones seeing the fibro patients, diagnosing them, doing the research on fibro, etc.

I see my rheumy about 4X a year now. When I first suspected FMS (from being in a chatroom with somebody with fibro and realizing I had many of the same symptoms) I told my PCP my suspicions and she refered me to the rheumy who diagnosed me on my first visit. I didn't go back for a while because he had nothing to offer me that actually helped. When my insurance changed, I started seeing a different rheumy who did a buttload of tests on me to rule out other illnesses, and after about a year of consistent test results he said I probably JUST have fibro.

Don't you love that: "JUST have fibro, you know like its a bit of a cold or something, and it will be all good. I think Dr's often don't like to acknowledge how life effecting Fibro is because they don't know a thing about it.

I see a rheumy too and my family doctor. My family doctor has honestly been more helpful. Both of them diagnosed me. Next stop is a neuro.

I did water physical therapy and massage for awhile but my insurance ran out. They would not extend it unless I had shown significant progress after 4 months. Well after 4 months I was no longer needing to walk with a cane 2-3 times a week. (Just everyonce and a while). The PT thought my progress was not significant enough and would not advocate for continued care. Now I'm back to using my cane more and more. sigh, I hope we find more knowledge about this all soon.


----------



## supakitty (Mar 6, 2002)

I hate to sound like a broken record but I would really consider being tested for a carnitine deficiency if you haven't already.

-Laura


----------



## Ruthla (Jun 2, 2004)

By "just had fibro" he meant that I don't have another condition that would require different or additional treatment- there isn't much that actually helps fibro, but if I had Lupus or Lyme's or RA there are drugs that might actually help.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *supakitty* 
I hate to sound like a broken record but I would really consider being tested for a carnitine deficiency if you haven't already.

-Laura

What would the signs or symptoms of carnitine deficiencey look like? And specifically, what kinds of dietary changes would make it worse or better? If I could look at a list of things, and see that I felt better when I did something that would make a carnitine deficiency worse, then I'd know not to bother asking my dr about it.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
I hate to sound like a broken record but I would really consider being tested for a carnitine deficiency if you haven't already.

-Laura

How do they test for this? Is it just blood work?


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
By "just had fibro" he meant that I don't have another condition that would require different or additional treatment- there isn't much that actually helps fibro, but if I had Lupus or Lyme's or RA there are drugs that might actually help.

Sorry took your caps the wrong way. As you can probably tell I have had, some negative expereinces when I tell people I have Fibro.


----------



## bigeyes (Apr 5, 2007)

FWIW, I always end up happiest with a neurologist in the end. He treats my migraines and it helps with the fibro. I don't know if it's just a lucky coincidence or not, but I self-treat my thyroid right now after years of being jerked around by endos, and I am feeling better with this particular combination. I did some self-tests for adrenal symptoms and I think I'm ready for a thyroid hormone raise, so hopefully I can report a major improvement soon and be back to 'normal.'


----------



## Ruthla (Jun 2, 2004)

Normal? What's that?

I think I'm in another fibro flare. Or is it the same one that started after Yom Kippur? I'm not sure, I just know I'm tired and achey, and I can't take extra supplements like I usually do when I'm sore because I'm nearly out, and the company I've been buying them from for 3+ years is suddenly being unreliable and still hasn't sent them after a month!

In any case, I've got an open dispute going over at eBay, limited email contact with the seller ("we're out of stock on some things but we'll send you what we do have in stock plus a special gift." OK, that was nearly a week ago, where's my @##% package?)

I just ordered equivilent supplements from drugstore.com- not the exact same brands I've been using but the same or higher amounts of magnesium, malic acid, and MSM that's contained in the stuff I've been taking all this time. Now I wish I'd done that a week ago so I could take extra magnesium and MSM right now. sigh.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Ruthla* 
Normal? What's that?

I think I'm in another fibro flare. Or is it the same one that started after Yom Kippur? I'm not sure, I just know I'm tired and achey, and I can't take extra supplements like I usually do when I'm sore because I'm nearly out, and the company I've been buying them from for 3+ years is suddenly being unreliable and still hasn't sent them after a month!

In any case, I've got an open dispute going over at eBay, limited email contact with the seller ("we're out of stock on some things but we'll send you what we do have in stock plus a special gift." OK, that was nearly a week ago, where's my @##% package?)

I just ordered equivilent supplements from drugstore.com- not the exact same brands I've been using but the same or higher amounts of magnesium, malic acid, and MSM that's contained in the stuff I've been taking all this time. Now I wish I'd done that a week ago so I could take extra magnesium and MSM right now. sigh.

I get all my supplements from vitacost.com. Good prices, good service, fast shipping.


----------



## Blooming (Feb 16, 2006)

what supplements do you guys take? Do they happen to be gluten free?


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Blooming* 
what supplements do you guys take? Do they happen to be gluten free?

I think mine are. I usually look for soy free. I take selenium, a lot of b2, coq10, magnesium, b12, melatonin, msm, glucosamine, calcium, vitamin d, vitamin a, vitamin c, copper and zinc, kelp, folic acid,soy free vitamin e, and iron.


----------



## Blooming (Feb 16, 2006)

Okay, anyone else feel like they are about to die from trick or treating? Because I am. My stupid legs won't work and my back is freaking out.

This kind of stuff drives me nuts. I will not miss these events in my children's life. I am part of this family. But at the same time today dh had to stay home from work to care for me. More money lost. And our van that we just put 1,000 dollers worth of work into will not work. Please send let it just be a bad battery thoughts.

Here's hoping this flare passes quickly..............


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
Okay, anyone else feel like they are about to die from trick or treating? Because I am. My stupid legs won't work and my back is freaking out.

This kind of stuff drives me nuts. I will not miss these events in my children's life. I am part of this family. But at the same time today dh had to stay home from work to care for me. More money lost. And our van that we just put 1,000 dollers worth of work into will not work. Please send let it just be a bad battery thoughts.

Here's hoping this flare passes quickly..............











We don't celebrate Halloween in our family, but I was equally knocked out around the Jewish holidays- not from walking around with the kids visiting neighbors, but from being on my feet all day cooking and cleaning and general holiday prep- and this was without having any guests!

I actually did let DS participate with some neighbors and their trick or treating- my Mom gives out candy and we live in her upstairs, so there was no avoiding it. But I didn't personally do the ToTing with him.


----------



## Ruthla (Jun 2, 2004)

I'm feeling pretty sore today. I pigged out on pizza and cake at DS' birthday party yesterday- I'm not sure if it was the wheat, the dairy, the total carb input, or the stress of party planning and execustion, but I feel pretty lousy today. Of course, I felt lousy all week so I'm not even sure I feel worse than usual.

I saw my rheumatologist today, and he gave me pressure point injections and a prescription for a new medication (Lyrica) to take in addition to the Ultram.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
I'm feeling pretty sore today. I pigged out on pizza and cake at DS' birthday party yesterday- I'm not sure if it was the wheat, the dairy, the total carb input, or the stress of party planning and execustion, but I feel pretty lousy today. Of course, I felt lousy all week so I'm not even sure I feel worse than usual.

I saw my rheumatologist today, and he gave me pressure point injections and a prescription for a new medication (Lyrica) to take in addition to the Ultram.

I'm sorry your not feeling well today. I hope your new medication helps you feel better.

I just heard of a book called everything your doctor may not tell you about Fibromyalgia. I've heard it has helped some people. I'm going to try to check it out.


----------



## Brigianna (Mar 13, 2006)

I started taking Celexa to even out my sleep patterns. I can't tell if it's working.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
I'm sorry your not feeling well today. I hope your new medication helps you feel better.

I just heard of a book called everything your doctor may not tell you about Fibromyalgia. I've heard it has helped some people. I'm going to try to check it out.

I have a book titled "what your doctor may not tell you about Fibromyalgia." Basically the author is a dr who prescribes a certain medication to treat FMS- something available OTC- some kind of cold medicine, but in higher doses. The catch is that it can make things worse before it makes you better, not everybody responds to it, and natural salicylates make the med stop working.

This means that I'd have to stop using just about everything that DOES work (menthol saliclyate or capsicaine rubs, peppermint and lavendar oils in my tub, tea tree oil for non-FMS skin problems) in order to try this medication. So if I do hit a bad spell, what can I use for relief? Plus most of my "all natural" skin care products- the ones that DON'T cause flares from my chemical sensitivities, I wouldn't be able to use either. And I wouldn't be able to use these for the rest of my life, which would be how long I'd need to continue taking this drug.

Not worth it IMO. I've found a few things that help, and natural moisturizers/soaps/etc that I can tolerate- I won't give that up for something that may not even help.

Ugh. My left shoulder is really, really sore. I'm wondering if the pressure point injection may have made things worse.


----------



## supakitty (Mar 6, 2002)

Can someone here please describe to me what it feels like to have fibromyalgia? How long does a flare last? Will it be widespread aching burning pain in your major muscles? Do you feel stiff and sore in the morning? Does it get better as the day goes on or is it an all day thing?

Thank you.

-Laura


----------



## bigeyes (Apr 5, 2007)

I think it's different for everyone. My mom can't even stand the feeling of sheets and blankets on her skin. Mine seems to be mostly shoulder, upper back, neck and head pain, exhaustion, migraines, brain fog, and basically symptoms that are interchangeable with hypothyroidism.









I think what you are describing fits, too. Sleep problems are common as well. Some days I can't turn over to get out of bed without it really hurting, but once I'm up I'm better. Other days I feel like I'm 90 all day long.


----------



## Blooming (Feb 16, 2006)

In my expereince it is all those things and so much more. Anxiety, depression, migraines, I've had lose of vision, falling over, dizziness, weekness. Oh and how could I forget the exhaustion.

Sometimes it comes in flares, as in acts up. Usually it is there with one symptom or another. Very, very rarley I have a day where I feel normal.

Everyone is diffrent though. We all have diffrent symptoms. I hope you don't have this.


----------



## AngelBee (Sep 8, 2004)

Quote:


Originally Posted by *supakitty* 
I wrote this not too long ago about this very same feeling:

Chronic Illness

You see me and I look normal.

You see me as your colleague. Some days I greet you with a smile. Some days I look tired. Usually I am buried in work just like you, most of the time these days I just like to be alone. Some days I'm not there when I should be. Many days may go by and you begin to ask about me, why is she always absent, why does she call in sick, she doesn't look sick, she looked fine the other day&#8230;

You see me as a patient. I look fine, my tests are normal, and my illness has no name that you have found. You're tired of looking. You're tired of hearing about my symptoms. The endless battery of tests tells the story of a physically normal woman, the woman tells a different story. You offer me anti-depressants and benzodiazepines; you tell me I'm depressed.
You're right about one thing: I am depressed.

You see me as your mother. You know the look I get in public these days when I need desperately to go home and lay down. You used to argue but now you look at me and say, "Mommy, we can go home, I know you feel bad." You don't blame me for not being as good as the other mommies.

You see me as your partner. You watch me struggle and feel helpless. You hold me closely as you slowly adapt to the person I have become. You encourage me, you listen to me cry, you accompany me when I ask you to, you know when its time to go home. You look me in the eyes and tell me you believe me.

I see myself, 34 years old, once-strong, ambitious woman, now struggling to get through each day, living with a chronic illness that has changed every part of my life.


















I am going through testing to find out what is going on with my health.


----------



## Ruthla (Jun 2, 2004)

I just get days where I hurt more than usual. Generally I feel worse when I'm tired, and a little better when I'm well rested.

I've been avoiding dairy, soy, wheat/gluten, and all legumes to see if it helps me feel better. Today I had higher carbs than usual, and a tiny amount of soy in pumpkin pie crust (earth balance margarine) and higher carbs than usual (rice stuffing, pie with rice flour crust, etc) but I've been sucessfully avoiding both gluten and dairy for over a week. I'm hoping this diet will help me to feel better.


----------



## bigeyes (Apr 5, 2007)

I have to say that my concentrated effort to avoid soy has made a difference in how I feel. I have read all the arguments both pro and con, but I have to say I feel better when I don't eat soy. Since fibro and hypothyroidism seem to go hand in hand so often, it just seems to make sense to avoid soy with it being a goitrogen.









I wish I could kick my carb habit, but that doesn't seem to likely.







At least the carbs I eat are from 'real' food now.


----------



## Jeanne D'Arc (Apr 7, 2007)

Well I got my Rife Machine and am ordering an ozonator, I'll let
you all know how things go.

Since I have been drink my salt tonic and C.Tartar i have been
getting blisters, scabs, and massive itching. Something is definitely
happening. Someone pp, what Fibro is like? The best way I can
describe it is like having your worst hangover, every day..(for
a normal healthy person ) OR, like having the flu.

Fibro is a pathogenic disease, and can be exacerbated by
chemical sensitivities as well.

Oh btw...epsom salt baths are great!


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Jeanne D'Arc* 

Well I got my Rife Machine and am ordering an ozonator, I'll let
you all know how things go.

Since I have been drink my salt tonic and C.Tartar i have been
getting blisters, scabs, and massive itching. Something is definitely
happening.

can you explain more about this? I've never heard of either. Is it a good thing that you are getting blisters and such?

Oh and I 2nd the Epsom salt baths, they are very helpful.


----------



## zonapellucida (Jul 16, 2004)

Anyone hear of Lyrica? I started this two days ago along with high doses of benadryle becasue it makes my jaw lock. (I think I am allergic but deperate enough to give it a shot) I just wish I could take demerol or morphine and be in la la land then I would be able to at least play wiht the kids or sit long enough to watch a movie with them. Right now I am useless as it hurts to be touched.

still trying mucinex and glucosamnine and chondrotine in heavy amounts. Nothing helps except heavy pain medication and one wouldn't want to prescribe that because I might be comfoprtable for a few days-) And I sleep a lot!


----------



## Jeanne D'Arc (Apr 7, 2007)

Quote:


Originally Posted by *Blooming* 
can you explain more about this? I've never heard of either. Is it a good thing that you are getting blisters and such?

Oh and I 2nd the Epsom salt baths, they are very helpful.


Like I said, I have tested positive for Mycoplasma, Candida and
I even think there was some mold floating around in there ( blood
test ), its no _*wonder*_ I feel so awful!I have not yet been
tested for lyme, but when I do I am going to be very very selective
because the test is so unreliable.

I am treating myself for these pathogens by trying to kill them.
I am not getting bumps, rashes and itching because i am allergic
to anything i am taking. Half of my treatments arent even
food derived. Rife is electromagnetic frequencies as championed
and used by Nikola Tesla and Royal Rife. The frequencies are not
anywhere high enough to hurt you, however they can and do
effect pathogens.

Ozonator is a machine that creates ozone, it oxygenates the
body. It can do no harm to you, and helps your body heal
in many ways , it is also lethal to pathogens. This is yet another
invention championed by Nikola Tesla.

These machines ( the good ones ) are very expensive, so I am
not telling anyone to go out and buy one, but i am very severly
infected with bugs and they need to get out.









Salting the body is another way to kill pathogens , particularly Lyme
bacteria. For more information about this see

Lyme Photos

So , the itching and burning rashes are probably candida comming
out of my body. I know that when I had a lung infection ( candida)
my lungs itched BAD!! It is annoying but it is also good. I know
one thing , is that when you are polluted with pathogens and
gargage you sometimes gotta get out the big guns. And thats
what I did.









I will let you all know how I progress...but like I said I don't have
my ozonator yet, and my Rife machine is still on order.


----------



## Blooming (Feb 16, 2006)

Thank you for all the info and the reminder that I want to ask my Dr. to test for yet somemore things this week.

I hope these things work for you and you feel better soon.


----------



## CorasMama (May 10, 2002)

Hi all,

I'm new to this tribe, but not to MDC and certainly not new to fibro!

My fibro was diagnosed 13 years ago, when I was 19, by a wonderful ER doc. My bf had called an ambulance, because I had woken up in so much pain that I was screaming and hysterical. The ER doc took my history, gave me some drugs







, did the pressure points test, and told me, "you have fibromyalgia. You need to see your doctor on monday, and if she doesn't believe you, switch docs til you find one who will." Because this was back in the bad old days, when docs mostly just told fibro patients, "there's nothing wrong with you, it's all in your head."







:

My fibro was fairly mild, only affecting my life when I had flares, and they were nearly always pretty short. The only time it was really a problem was during pregnancy, when I couldn't take meds. At least when she was bfing, I could take ibuprofen, or if I needed something stronger (rare, and almost never a narcotic, usually something else, which name escapes me), I could pump and dump for a while, as I had a HUGE backup of pumped milk in my freezer!

Then came 2001. I was living with my best friend, her kids, my dd, and my fiance. My bff and I had been raising all three kids together for four years, since we were pregnant with our dds, who are five months apart. Her ds is a few years older, and was experiencing some problems. He was about to be diagnosed adhd, and his teacher suspected the autism spectrum.

So, in 2001, the following happened:
Jan 2: my mom and stepdad told us that my mom, grandma to all three kids, died after a three and a half year battle with breast cancer, had only 6 months left. The docs had done all they could. So we moved the wedding date from August 8 to March 10, so she could be there.

Feb 2: my mom passed away. It came a lot quicker than we expected. To this day, I can't talk about it without crying (see below, re. PTSD)

Feb 10: when I pick my bff's ds from tae kwon do, and he has a huge meltdown. It continued to escalate, including one moment in the car, when he seemed to calm down, and said, in a very contemplative voice, "someday, I'm going to kill you."







: the rest of the evening was horrible, including a worthless trip to the ER. He was trying to hurt anyone who came in range, so had to be restrained. As he growled at him, the doc checked his ears and throat, pronaounced him fine, and sent us home w/ benadryl to knock him out, which we did, for the girls' safety.

Feb11: I spend the whole day admitting him into the local psychiatric hospital for evaluation. I did this, because bff's boss told her she couldn't have the day off, by pain of losing her job. He stayed in the hospital for 10 days. My uncle, a specialist in the extremely gifted and twice exceptional kids, came out from TX to evaluate him. I say this as an example of how much these kids were really considered by my family to be my kids too.

Feb 21: bff's ds comes home with a diagnosis of adhd, asperger's syndrome, and something else I can't remember ATM. They said he'd had a psychotic break, but was ok now, and he had a lot of meds.

March 10: I get married. (To my now dxh)

Late March-ish: I take incompletes in all my classes. I just can't handle all the grief and stress.

June 1: now dxh and I and dd move into our own apt. The lease on the house we'd all shared would be up June 30, but dxh can't take living w/ bff's ds anymore (which is understandable, since he has no attachment to bff's kids). So we pay double rent that month, and move our stuff out at a relaxed pace.

June-July 4: bff screws us over to the tune of $10,000. She did a lot of stuff that was just totally irresponsible that affected us. I now have to grieve the separation from these other two kids, who I consider mine, AND the betrayal of bff. It was like a divorce, seriously.

Sept. 11: dxh and dd come home early, as she is enrolled in the montessori at his work, a government contractor! I lose clients, and a woman I talked to all the time over a project, in the attack on the pentagon.

Mid-late Sept.: I get a migraine, and a fibro flare. They both last for ~6 months.

Since 2001, I've gone from a mild case of FMS, to a severe case, with an additional diagnosis of chronic fatigue syndrome. One of the main causes of my divorce, a year and a half later, was dxh never fully believing how sick I really was. Also, three MDs and an ND all said that I needed to move back to Seattle (home) for my health, that the weather, pollution, and isolation from friends and family, of living in the DC area was making me sicker. He said that, to him, that wasn't reason enough to move.

I've recently (2 yrs ago) been diagnosed with PTSD from the cummulation(sp?) of everything that happened in feb-sept of 2001. I had always thought PTSD had to come from a single traumatic event.

I haven't had insurance for the majority of the last 3 years. Luckily, I have a doc who is willing to work with me, and only insists on seeing me once a year. I just pick up my Rx at the reception desk every month.

My current regimen is: a 75mcg/hr fentanyl patch. Ultram or Vicodin for breakthrough pain. Neurontin, 2400mg nightly. Zanaflex nightly as needed. Lunesta as needed. I'm supposed to be on something for my depression, but I haven't been able to see the doc in a long time, and she doesn't want to (and shouldn't) prescribe antidepressants w/o follow-up.

The only time in the last 6 years that I've felt "normal", like nearly completely healthy, was for a couple months in late 2002, when I was going to a chiropractor and acupuncturist three times a week.

I just got married (yay!!!) And now I have insurance (yay!!!) So I'm going to see my doc and a naturopath soon.

I want to find a way to get off all the meds. We want to have two more kids. That means, A: I need to be off any meds not safe for pregnancy and bfing, and B: I need to significantly reduce my pain level and *significantly* increase my energy level.

Sorry this was so long. But that's my journey with FMS and CFS (and depression and PTSD).


----------



## CorasMama (May 10, 2002)

Have any of you heard of the spoon theory? It's a great way to describe to others, how we feel, and how we can feel and function from day to day.

http://www.butyoudontlooksick.com/20...oon_theory.php

It was, I think, originally told by someone with lupus, but it applies just perfectly for fms and cfs.


----------



## Blooming (Feb 16, 2006)

Welcome Cora's Mom! Thank you for sharing your story.

I read your post and am so sorry you have gone through so much. I to have PTSD and Fibro and am in the middle of a very painful flare. (The holidays have never been a good time for me).

I am glad you have found a new partner to be with and that you are working towards your goals and dreams. I admire you for that, it can be very hard to to do with the Fibro.

I have heard of the spoon theroy. I actually have a small spoon pin that my mom ordered for me. Unfortunatly, as my friends move forward with their lives, children, and careers I seem to be left further and further out of their lives.







:

They like to pretend I am not as sick as I am and don't want to deal with anything that would remind them.

The only people who seem to understand are my family (who are also far away). We cannot move closer to them because a major part of the reason I have PTSD is due to them.

I am rambling now. I'm glad you've joined us.


----------



## Ruthla (Jun 2, 2004)

Welcome CorasMama. I'm sorry you went through all that yucky stuff in your life, but I'm glad you've found us.

Yup, I'm familiar with the Spoon Theory. I found it years ago, I think before I even found MDC.

Now that I've been approved for SSI, I think my parents finally "get it" that I really am sick and I'm not just being lazy or making any of this up.


----------



## zonapellucida (Jul 16, 2004)

welcome corasmama. What a story.


----------



## Blooming (Feb 16, 2006)

I just need to vent. I am so dam tired of all this. DH just had to say no to a really great oppurtunity came his way and he had to say NO because of ME.

I feel like I am ruining my famlies life because I am always sick.

I feel like they would be better off without me.

I keep trying to get a job-no luck. I've been trying for a year.

I HATE FIBROMYALGIA!


----------



## supakitty (Mar 6, 2002)

Reading this thread and thinking of everyone. -Laura


----------



## supakitty (Mar 6, 2002)

Hey I have a question - Since this is likely my diagnosis - Does anyone here struggle with a feeling of weakness or a feeling of trembling (not necessarily that someone might observe but that you feel internally) with exertion or when the pain is really bad?

-Laura


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
Hey I have a question - Since this is likely my diagnosis - Does anyone here struggle with a feeling of weakness or a feeling of trembling (not necessarily that someone might observe but that you feel internally) with exertion or when the pain is really bad?

-Laura

yup, I had this on Monday.


----------



## supakitty (Mar 6, 2002)

Okay another question - When the pain is at its worst which is aching, burning pain in my arms and legs, I try and take a nap and find that I still feel the pain when I am laying down and when I wake up (if I can fall asleep) I still feel sore and tired. Does this happen to anyone else here?

-Laura


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *supakitty* 
Okay another question - When the pain is at its worst which is aching, burning pain in my arms and legs, I try and take a nap and find that I still feel the pain when I am laying down and when I wake up (if I can fall asleep) I still feel sore and tired. Does this happen to anyone else here?

-Laura

Yup, all the time.


----------



## fullofgrace (Nov 26, 2002)

Happens to me, too. I switch from days of pain, to days where my knees will randomly give out and I'll fall on my butt, or I'll suddenly drop objects.


----------



## bigeyes (Apr 5, 2007)

For me, anything where I stay in the same position too long is going to be painful. Driving or riding for more than an hour, sitting in a theater or at a desk without getting up, sleeping, it's going to be really hard to get up because I'll be stiff and kind of stuck.


----------



## supakitty (Mar 6, 2002)

I'm going to my rheumatologist today to talk specifically about this diagnosis. I have been taking tramadol with some relief of the pain. Morning seems to be the worst time. Also, a little OT but I lost my baby yesterday, I was 15 weeks. It was very sad.








:

-Laura


----------



## Ruthla (Jun 2, 2004)

I'm so sorry for your loss.

I know I always feel worse physically when I'm upset emotionally- plus you've got all those postpartum hormone shifts going on. Take care of yourself mama.


----------



## CorasMama (May 10, 2002)

Supakitty-







I'm so sorry. Ruthla makes a good point about taking care of yourself.

I hate being in pain all the time.

DD complains about aches and pains more than most kids her age. She has a foam mattress, and I have to put an eggcrate foam topper on it, or she wakes up in pain. I don't know any other kid her age who needs as much sleep as she does. Seriously, she is nearly 10, and she's in bed by 7:30p, and asleep by 8:30-9p (she reads herself to sleep, because she has trouble sleeping), and sleeps til 7:30-8:15a. I don't want to tell her this, but I suspect she has juvenile fibro. I've surreptitiously done the tender points test, and she has 14 of the 18. The diagnostic standard is 11 or more. She also feels other pain more, like I do, like the pain receptors are more sensitive. But I can't get her doctor to take me seriously.

I don't know what to do about it, but for now, I'm kind of just leaving it, and keeping an eye one it. I don't want to tell her about my suspicions, because she tends to be a bit of a drama queen, and also I don't want her to think there's anything holding her back. If at some point, it starts affecting her life, I'll talk to her about it. I know, as a teenager, I would have loved to know what was wrong with me. I thought I was just a wimp and a whiner like my dad told me. It was such an eye-opener when I was diagnosed at 19, and told _why_ I was hurting so much!


----------



## Ruthla (Jun 2, 2004)

I have the same suspicions about my 11yo- but I honestly don't know what I could possibly do to help her even if it is the case. If the GF diet helps me significantly, I may have her try it as well- but I'd rather test this out on myself first.


----------



## Jeanne D'Arc (Apr 7, 2007)

Quote:


Originally Posted by *supakitty* 
I'm going to my rheumatologist today to talk specifically about this diagnosis. I have been taking tramadol with some relief of the pain. Morning seems to be the worst time. Also, a little OT but I lost my baby yesterday, I was 15 weeks. It was very sad.








:

-Laura

Just sending hugs and support momma, i am so sorry.


----------



## thomrho (Nov 8, 2007)

I STRONGLY urge anyone having Fibromyalgia to have a sleep study. Some studies have shown a rate of 80% of people with Fibromyalgia having sleep apnea. Of course no one knows for sure what causes Fibromyalgia. Personally, I was diagnosed with it a year ago. Since then I have had two sleep studies and I am now being treated for moderate to severe sleep apnea. Sleep Apnea can typically be treated with CPAP (continuos positive air pressure). It is a mask and hose that blows air to keep your airway open. I was feeling so bad and now I've been improving dramatically. Two months ago I had to take three weeks off of treatment for sleep apnea because of sinus surgery. My Fibromyalgia Flared badly. Anyway, I hope that this information can help some of you. I actually have been having 80% or more good days when it used to be about 10%. Good luck!


----------



## bigeyes (Apr 5, 2007)

I had one done and what they found was that I was not getting to the REM state. Once they drugged me into sleep I actually remembered a dream for the first time in something like 10 years! So while I didn't have sleep apnea, I had an unnamed sleep disorder.


----------



## zonapellucida (Jul 16, 2004)

Quote:


Originally Posted by *supakitty* 
I'm going to my rheumatologist today to talk specifically about this diagnosis. I have been taking tramadol with some relief of the pain. Morning seems to be the worst time. Also, a little OT but I lost my baby yesterday, I was 15 weeks. It was very sad.








:

-Laura









I had a 14 wk loss. Check out the pg loss board. There are some great women over there.


----------



## Jeanne D'Arc (Apr 7, 2007)

Quote:


Originally Posted by *thomrho* 
I STRONGLY urge anyone having Fibromyalgia to have a sleep study. Some studies have shown a rate of 80% of people with Fibromyalgia having sleep apnea. Of course no one knows for sure what causes Fibromyalgia. Personally, I was diagnosed with it a year ago. Since then I have had two sleep studies and I am now being treated for moderate to severe sleep apnea. Sleep Apnea can typically be treated with CPAP (continuos positive air pressure). It is a mask and hose that blows air to keep your airway open. I was feeling so bad and now I've been improving dramatically. Two months ago I had to take three weeks off of treatment for sleep apnea because of sinus surgery. My Fibromyalgia Flared badly. Anyway, I hope that this information can help some of you. I actually have been having 80% or more good days when it used to be about 10%. Good luck!

80%? I dunno. I don't snore at all, and I'm very thin. So i doubt I could
have obstructive apnea. I am however soooo glad you are getting
good sleep now, I can't imagine if i didnt get good sleep. I actually
sleep okay most of the time, but that is not without plenty of
supplementation.

Quote:

Of course no one knows for sure what causes Fibromyalgia.

It is most commonly a pathogenic disease, whether it be a combination
of Mycoplasma, Mold/candida or Lyme, and goes hand in hand with
chemical sensitivities ... most people with fibro and cfs test positive for
one or more of those pathogens ( parasites too ).
So there is def a cause to our misery.

I have tested positive for Mycoplasma, Mold, and Candida, I
believe there were even some parasites found. I will be
getting my Lyme test soon, and firmly believe it to be the
cause of much of my muscle pain and neurological symptoms.


----------



## CorasMama (May 10, 2002)

OMG!OMG!OMG! I just slept, all night long, all in one chunk! And I just had to share this momentous occasion with someone(s) who would understand. Sure, it took Rozerem, Clonazepam, and a muscle relaxer to do it, but it happened!







:

Also, I had an amazing doctor visit last week. First, it was amazing because I could actually go see her, as I haven't had insurance in over a year, and now I have great insurance, having gotten married last month. But, she also listened to me, and we discussed a bunch of stuff:

1: I needed to temporarily (see #2) up the dosage on my fentanyl patch to 100mcg/hr, as I'd got a tolerance built up to the 75s. She did that.

2: in January, I want to work on getting off the Fentanyl patch and the other meds I'm on, and try some alternative therapies, because I want to TTC in about a year. She's going to help me wean slowly and detox (not going to be a pleasant process, as I've been on the patch for 5 years!)

3: I'm not entirely convinced that it's Fibromyalgia. I believe that, within all the diagnoses of fms, it's really some actual fms, and several diseases that they just haven't discovered yet. Why else would there be such diversity in what treatments work? But for me, it's like, none of the treatments I've tried (cognitive, Neurontin - works ok for my RLS, not for my pain, guiafenisin, etc) have worked. Plus, there are a few fms symptoms I don't have (I have an aversion to heat, not cold), and I have some non-fms symptoms, like weird skin tactical issues, and my pain is worse than the vast majority of fms patients.

So she's sending me to a Neurologist. Yay! Because I'm convinced that all the Rheumos I've seen have all done diddly for me.

4: one of the major reasons I suspect it's not fms is that methylprednisolone, a corticosteroid, makes me feel TONS better. A doc gave it to me for an injury about 6 years ago, and it had this amazing side affect of making me feel almost normal. Since then, whenever I've asked a doc for/about it, they've dismissed it, saying, "steroids don't work for fms, so that didn't make you feel better, and I'm not going to perscribe it". I finally convinced my doc in Virginia to give me a dosepak (it comes in a six day "dosepak", where you start off taking 6 pills a day, and go down by one/day) for the week I was going to be driving across the country, but I think that he only did it because he was getting rid of me, and wouldn't have to follow up when I said, "see, it worked - I felt good enough to drive across country!"

I asked my doc to give me a dosepak for Xmas week, as we have tons of different family to see, plus travel. And not only did she, she gave me two, one for this week, too!

5: she figured out why my hips have been hurting so badly. I have bursitis, probably from all the side-lying I do, since I'm in bed so much. She said, having already written the Rx, "hey, the methylprednisolone should really help with that, and if not, we'll do some direct injections."

It is such a relief, knowing that I'm being taken seriously, and finally going to be medically cared for. Without insurance, since I couldn't actually go see her, all she's been doing is calling in or writing my Rxs for so long. I'm going to see a Neurologist, and I've got a referral to a sleep clinic. Yay!!!

Even though it's going to suck pretty hard getting off the fentanyl, I know there's a light (or rather, a baby) at the end of the tunnel!

And did I mention I slept? All night long? 8 hours in a row?


----------



## Ruthla (Jun 2, 2004)

Whoohoo! congrats on the good sleep!

I find I feel relatively good if I get 10+ hours of sleep, which I need melatonin to accomplish. And I think that the dairy-free, gluten free diet is helping- I've been on it a month and overall I'm just starting to feel "less fibrofogged" and my AF is here and lighter than it's been in a very, very long time. Hoping this dietary change will lead to actual healing for me!


----------



## CorasMama (May 10, 2002)

of course, I just kinda ruined all the benefits of the good sleep (and then some), by walking all over creation and finishing my Xmas shopping! sigh. At least I can nap for the next 2 days during the schoolday...

And Ruth, congrats on your DS's bday (or is it congrats on updating your sig?) Foursday...







:







:







:


----------



## Ruthla (Jun 2, 2004)

His birthday was in mid November. DD just turned 13 earlier this month though.


----------



## Phoenix~Mama (Dec 24, 2007)

I may just cry over the blessed feeling that has just washed over me with finding this thread.

I have had fibromyalgia, nearly my whole life, was only finally diagnosed with it when I was 21... I am now 26 and have learned a lot in the five years since diagnosis.

When I first got diagnosed I was terrified that it meant I could not have children... For a long time I was in intense pain and extremely fatigued.

Recently, I have been blessed with a wonderful SO with a daughter. She has taught me and shown me I am able to push through a lot because I know I have to be there for her. I am also blessed with a very understanding SO.









I am looking forward to getting to know other Mom's that battle this chronic illness and being part of the much needed support for each of you in return.


----------



## Ruthla (Jun 2, 2004)

Welcome Jenifer.

I seem to be doing better on a grain free/legume free/dairy free diet. I'm having less pain and fatigue lately, although the differences seem very subtle. The major thing remains respecting my limits and stopping when I need to, so I don't go into a flare and hurt for days.


----------



## Phoenix~Mama (Dec 24, 2007)

Thanks Ruthla!









I think accepting and actually following our limitations is always a struggle for fibromyalgics. I know I push myself a lot when I shouldn't, and generally pay dearly for it.

I tend to feel really guilty when I need to nap too. I want to be able to stay up and help my DBF with things when my DSD takes a nap... but sometimes I really need to lay down too.

For instance Christmas Eve... I knew there was no way I'd make it through the night without taking a nap with Alex. I had to go into work at 5 am that morning in order to leave at 1:30 to get home in enough time to take the nap and get ready to go to DBF's Dad's house. I am so glad I stuck to my instincts and did, because we ended up being awake til about 2 am once we finally came home from his Dad's, getting Alex to bed, then waiting til she was fully asleep to do the Santa thing. There was no way I would have made it had I not laid down... or I would have been in serious pain and not much help being Santa, which would have made me more sad.


----------



## Blooming (Feb 16, 2006)

Welcome Jenifer!

I'm glad you found us too. There is good support here.

I hear you on the nap thing. I often feel as if I sleep my day away. But your right about listening to those instincts. I know that if I want to give all I can to myself, family, and friends I have to get that extra sleep.

I hope everyones having a good day.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *CorasMama* 
OMG!OMG!OMG! I just slept, all night long, all in one chunk! And I just had to share this momentous occasion with someone(s) who would understand. Sure, it took Rozerem, Clonazepam, and a muscle relaxer to do it, but it happened!







:

Also, I had an amazing doctor visit last week. First, it was amazing because I could actually go see her, as I haven't had insurance in over a year, and now I have great insurance, having gotten married last month. But, she also listened to me, and we discussed a bunch of stuff:

1: I needed to temporarily (see #2) up the dosage on my fentanyl patch to 100mcg/hr, as I'd got a tolerance built up to the 75s. She did that.

2: in January, I want to work on getting off the Fentanyl patch and the other meds I'm on, and try some alternative therapies, because I want to TTC in about a year. She's going to help me wean slowly and detox (not going to be a pleasant process, as I've been on the patch for 5 years!)

3: I'm not entirely convinced that it's Fibromyalgia. I believe that, within all the diagnoses of fms, it's really some actual fms, and several diseases that they just haven't discovered yet. Why else would there be such diversity in what treatments work? But for me, it's like, none of the treatments I've tried (cognitive, Neurontin - works ok for my RLS, not for my pain, guiafenisin, etc) have worked. Plus, there are a few fms symptoms I don't have (I have an aversion to heat, not cold), and I have some non-fms symptoms, like weird skin tactical issues, and my pain is worse than the vast majority of fms patients.

So she's sending me to a Neurologist. Yay! Because I'm convinced that all the Rheumos I've seen have all done diddly for me.

4: one of the major reasons I suspect it's not fms is that methylprednisolone, a corticosteroid, makes me feel TONS better. A doc gave it to me for an injury about 6 years ago, and it had this amazing side affect of making me feel almost normal. Since then, whenever I've asked a doc for/about it, they've dismissed it, saying, "steroids don't work for fms, so that didn't make you feel better, and I'm not going to perscribe it". I finally convinced my doc in Virginia to give me a dosepak (it comes in a six day "dosepak", where you start off taking 6 pills a day, and go down by one/day) for the week I was going to be driving across the country, but I think that he only did it because he was getting rid of me, and wouldn't have to follow up when I said, "see, it worked - I felt good enough to drive across country!"

I asked my doc to give me a dosepak for Xmas week, as we have tons of different family to see, plus travel. And not only did she, she gave me two, one for this week, too!

5: she figured out why my hips have been hurting so badly. I have bursitis, probably from all the side-lying I do, since I'm in bed so much. She said, having already written the Rx, "hey, the methylprednisolone should really help with that, and if not, we'll do some direct injections."

It is such a relief, knowing that I'm being taken seriously, and finally going to be medically cared for. Without insurance, since I couldn't actually go see her, all she's been doing is calling in or writing my Rxs for so long. I'm going to see a Neurologist, and I've got a referral to a sleep clinic. Yay!!!

Even though it's going to suck pretty hard getting off the fentanyl, I know there's a light (or rather, a baby) at the end of the tunnel!

And did I mention I slept? All night long? 8 hours in a row?

I'm so glad you've found a doctor to listen to you. I'm still working on this. My DR. is going to test my body for large amounts of metal in about three months. She is working with a natropath that says some people with fibro seem to have this. Next stop is the neurologist for me.

And 8 hours of sleep rocks!


----------



## Phoenix~Mama (Dec 24, 2007)

How is everyone holding up after all the holiday energy? Doing okay here... a bit tired today though since I couldn't sleep last night. But I slept til noon yesterday!!! It was sooo needed and so awesome!!


----------



## Blooming (Feb 16, 2006)

I'm actually doing okay. We really took it easy this holiday. Although I should probably wait and answer that question after this weekend. Some of my family is arriving on Saturday to celebrate the holidays. They're staying in a hotel though. I will say this, if nothing else Fibromyalgia has taught me how to draw some boundries.

Hope everyone else is feeling well.


----------



## supakitty (Mar 6, 2002)

Hi Everyone!

I'm flying to Dallas, Texas tonight to see a specialist in neuromuscular disease. Wish me luck!

-Laura


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *JSMa* 
How is everyone holding up after all the holiday energy? Doing okay here... a bit tired today though since I couldn't sleep last night. But I slept til noon yesterday!!! It was sooo needed and so awesome!!









I'm completely exhausted. Well, I'm better today than I was yesterday.

I'm trying to figure out if I was fighting off a virus, or I overdid things by getting to bed too late a few nights in a row, or if I ate something that set me off (I'm suspecting gluten contamination from the vanilla extract I used in my eggnog on New Year's Eve. I've had that bottle a while, from before I went off wheat and gluten, and may have gotten flour on or in it.)


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *supakitty* 
Hi Everyone!

I'm flying to Dallas, Texas tonight to see a specialist in neuromuscular disease. Wish me luck!

-Laura

Good luck! I hope the travel isn't too much for you.


----------



## Brigianna (Mar 13, 2006)

Quote:


Originally Posted by *JSMa* 
How is everyone holding up after all the holiday energy? Doing okay here... a bit tired today though since I couldn't sleep last night. But I slept til noon yesterday!!! It was sooo needed and so awesome!!









I want to naaaaaap..... but I caaaaaaan't..... 'cause of the baaaabyyyy.... whine whine whine whine whine grumble grumble grumble.

So I'm talking to y'all and corrupting Ruthla's daughter instead.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Brigianna* 
I want to naaaaaap..... but I caaaaaaan't..... 'cause of the baaaabyyyy.... whine whine whine whine whine grumble grumble grumble.

So I'm talking to y'all and corrupting Ruthla's daughter instead.


----------



## bigeyes (Apr 5, 2007)

I survived the holidays fairly well. My migraine doc switched my sleeping aid at my request and I really feel the difference in the daytime. Amitriptyline was really making me drag my @$$ in the daytime, and with the added brain fog from hypothryoidism and topamax, I was feeling like I was brain dead. He took me off the amitriptyline and gave me nortriptyline instead, and I feel much less hung over in the mornings.

I even got through the Christmas baking and candymaking without too much trouble. I did eat way too much stuff I normally avoid, it was nearly impossible to get soy free chocolate in the amounts I needed, and I made some stuff with oreos, ugh, and we ate out a lot, so I am sure I had way too much soy in my diet for the past 2 weeks at least. I've totally kicked caffeine except for my morning coffee, the topamax makes cokes taste funny. It has a side effect of weight loss, too, and last doctor's visit recorded 12 lbs lost, which is nice considering I've got a few to lose.









I found some stuff online linking migraines to tannins, and soy is included in the list of foods, so I have another reason to avoid it. A woman in my thyroid group told me some women had success with avoiding menstrual migraines by using progesterone cream, said that they were a symptom of estrogen dominance. I got a tube and gave it a test flight, and had NO MIGRAINES during my cycle, so I'm sold. Apparently if I were younger I could get a doc to give me synthetic (ick) hormones to do the same thing.







: The nurse in the doc's office told me they would prescribe synthetic progesterone if I let them test my hormones, and she didn't have an answer for me when I asked her why they don't test all the 16 and 17 year old girls they put on the pill when they have menstrual cramps, or why they don't prescribe natural hormones.









I'm still confused as to why my fibro symptoms seem to ease up when my hormones (thyroid and estrogen/progesterone) are tweaked. Less body aches, less headaches, less fatigue. It's hard for me to know if it's the hormones, the diet, or the combination.


----------



## Blooming (Feb 16, 2006)

You know my symproms seem to wax and wan with my cycles. I do have to suspect hormones have something to do with this.


----------



## Phoenix~Mama (Dec 24, 2007)

It's definitely the hormones that will help/or hurt it.

Fibromyalgia is majorily chemical... so anything messing with our chemicals/hormones makes it go crazy.

Back to being way tired... I really don't know how I'm pushing through each day anymore. Sometimes it's like I'm watching myself do things, in a sort of trance... really odd.


----------



## frontierpsych (Jun 11, 2006)

I haven't gotten to read the whole thread but I was wondering if I could ask some questions...

I've had the symptoms of fibro for about 4 years now. I've been to dr's but I always get the same thing. "Here's some Motrin, call or come in when you need a refill." (Military docs-- if anyone else has dealt with them they've probably heard that too.)

Sometimes I have no energy to leave the house or I'm in too much pain and it irritates DH because he can't see what's wrong.

I've tried changing my diet, I've tried getting more rest, more exercise, etc. None of it works.

How do you get someone to understand? How do you find someone who doesn't dismiss you as depressed or a hypochondriac or a pain-pill addict (FWIW actually I HATE taking narcotics. They make me itch and nauseous.)

I feel like I've got nowhere to turn. I only recently (within the last 6 months or so) learned about fibromyalgia. I'm 99% positive that is what I have, but no one else I know has it and I've pretty much given up on seeing doctors for it.


----------



## Phoenix~Mama (Dec 24, 2007)

Unfortunately with this illness it puts a lot of work on you. You need to research and educate yourself and go to the doctor armed with information. Don't back down or make them think they know better because they have a degree... It's YOUR body... you know something isn't right.

Chart your symptoms, keep a journal of daily symptoms/pain levels... bring all this to your doc appointments. Have you seen a rheumatologist? They seem to be more open to diagnosis than family docs...

The best way to fight the illness is to stay educated... stay positive and find the balance that works for you. Unfortunately since the illness is chemical, it differs from person to person, which also means the treatments will be just as varied. A diet that works for one person with fibro to keep their symptoms at bay may not work for you...

It took me about three years to find a decent balance... it's a lot about listening to your body and really getting to know it. If your body is telling you you need to rest... do it. If you feel you need extra water that day, or calcium... do it. Soaking in a warm bath helps a ton in the winter months... heating pads are Godsends...

I don't like pain meds myself... Docs like to over medicate. They had me on 10 pills at one time and I saw no difference... that's when I started doing my own research and got off everything. I keep most symptoms at bay by not overdoing it and listening to my body... tough days I take Aleve to take the edge off... the real bad days I still have a script for Ultram. I HATE that I have to resort to narcotics some days... but it is what it is.

A big part of defeating the illness is acceptance... It WILL change your lifestyle. You will need to plan things a little more than you ever used to. But you can do it. *hugs*

A great site to check out is butyoudontlooksick.com It's for a bunch of chronic illnesses and a lot of great information there. There is a forum dedicated to Fibromyalgia/Chronic Fatigue. The Spoon Theory is a must read for anyone with a chronic condition or anyone that deals with a person that has a chronic condition... it really puts things into perspective.

Also, feel free to PM me.







I've battled this most of my life, and can certainly lend a sympathetic ear.


----------



## Blooming (Feb 16, 2006)

You've gottan some good advice here.

The only thing I would add is to be gentle with yourself it takes us all diffrent amounts of time to adjust, to figure things out. It has been 2 and a half years for me and I'm still getting used to it. So is my family. Lots of hugs mama. Take one day at a time. You can do this!


----------



## Ruthla (Jun 2, 2004)

I ended up learning about FMS because I was in a chatroom with somebody who had it, and I asked her about it. Then I did a ton of online research and realized that I had all the symptoms and it explained a LOT about what I'd been experiencing for years.

Then, at my next annual checkup, I told my dr I thought I had fibromyalgia- she referred me to a rheumatologist. The rheumatologist diagnosed me after about a 10 minute appointment (maybe it was less than that?) and prescribed drugs that barely touched the pain and made the brain fog worse- so I didn't go back to a rheumatologist for at least a year- and by then my insurance had changed and I saw a different one.

Unfortunately, the pain seems to have gotten worse since I was first diagnosed- but the good thing about that is there are meds that help.

The main "treatment" seems to be accepting my limits and pacing myself. I don't overschedule myself- if there's something important I want to do, I'll clear several days before and after so I'll have the energy to do it.


----------



## Phoenix~Mama (Dec 24, 2007)

Quote:


Originally Posted by *Ruthla* 
The main "treatment" seems to be accepting my limits and pacing myself. I don't overschedule myself- if there's something important I want to do, I'll clear several days before and after so I'll have the energy to do it.


Precisely.







Whenever I take a "vacation" where I need to fly... I know how much it wears me out so I make sure to schedule an extra day to the begining and end just for rest.

You will learn what each daily activity costs you in energy or points or spoons or marbles... there are lots of cute little things out there that people have come up with for "counting" their activity. Granted we all have our good and bad days... some days we are granted with more energy and find we can do more than usual... some days we may have less and find ourselves being discouraged that we didn't quite fit in what we had planned on...

That is another key point... Don't be discouraged or down on yourself if something has to wait til the next day. The world is not going to end if dinner dishes don't get done until the next morning. Letting go is a huge stride in dealing with the illness.

You may also find that you are able to sometimes "borrow" energy from the next day... it all comes at a cost of course. That's what I mean about planning though. I'm constantly thinking ahead and calculating out energy in my mind...

Learning to split up chores in little tasks to do throughout the day helps too. Learning that not everything needs to get done in that instant is key.

You know by the end of the day you may be thouroughly exhausted... so, maybe put together what dinner ingredients you can in the morning and keep it in the fridge... that way you just need to top it off or pop it in the oven at night.

There is nothing wrong with taking a 10 minute break to just sit in the middle of a task. Beleive it or not but that 10 minute rest may be the result in agonizing pain that sends you to bed early... or mostly bearable pain that allows you to get one more thing into the day.

It will be hard and a lot of pain to learn your boundaries and what you can push through, learning when that break is needed or when to stop... but it's worth it to learn the balance and lead a more "normal" life.

Also keep in mind... even after boundaries are learned... flare-ups happen. Don't get down on yourself and try not to drive yourself crazy because you did everything to your system and today you are in pain... it happens... take it easy and do what you are able to do, don't be hard on yourself about what you can't.

Be aware of everything... I know personally my illness is very weather oriented as well... when it's bitter cold or damp, I will be in more pain than usual... I plan accordingly and where looser, comfy clothes because I know I will feel swollen... just that small adjustment will make the day more bearable.

I've taught my DSD "quiet" time.







If it's the end of the day and I feel like all my nerves are on edge and I'm about to jump out of my skin with one more noise... I tell her "okay... it's quite time now... let's practice our whispers". She rather likes the game actually. hehe

Sorry for the rambly answers, by the way... lol I can go on forever about fibro... it's a difficult thing for sure.


----------



## umami_mommy (May 2, 2004)

:


----------



## Brigianna (Mar 13, 2006)

Quote:


Originally Posted by *frontierpsych* 
I haven't gotten to read the whole thread but I was wondering if I could ask some questions...

I've had the symptoms of fibro for about 4 years now. I've been to dr's but I always get the same thing. "Here's some Motrin, call or come in when you need a refill." (Military docs-- if anyone else has dealt with them they've probably heard that too.)

Sometimes I have no energy to leave the house or I'm in too much pain and it irritates DH because he can't see what's wrong.

I've tried changing my diet, I've tried getting more rest, more exercise, etc. None of it works.

How do you get someone to understand? How do you find someone who doesn't dismiss you as depressed or a hypochondriac or a pain-pill addict (FWIW actually I HATE taking narcotics. They make me itch and nauseous.)

I feel like I've got nowhere to turn. I only recently (within the last 6 months or so) learned about fibromyalgia. I'm 99% positive that is what I have, but no one else I know has it and I've pretty much given up on seeing doctors for it.









Your story is so common among FMS sufferers. I hope you get some recognition soon.


----------



## Blooming (Feb 16, 2006)

I just need to vent. I get so frustrated with the Fibro. My family came up to see us today. I was in such pain I had to ask them to go back to the hotel early.

All I wanted was a hot bath and now the furnance is broken.

I hate that Fibro takes so many things away from me.







:


----------



## supakitty (Mar 6, 2002)

big hugs to you, mama.


----------



## Blooming (Feb 16, 2006)

Thanks supakitty. You know I love the quote in your siggy. Everytime I read it it reminds me to push forward.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
I just need to vent. I get so frustrated with the Fibro. My family came up to see us today. I was in such pain I had to ask them to go back to the hotel early.

All I wanted was a hot bath and now the furnance is broken.

I hate that Fibro takes so many things away from me.







:


----------



## FishBounce (Dec 17, 2007)

Would anyone mind if I lurked in here?
I have been struggling with chronic pain since I was 16. I am now 26. For over a year in 2006, I tried to get help. No doc would listen to me and all I got was the run-around. Most days I feel like curling in a ball and weeping hysterically over this whole situ.
My aunt has fibro and I firmly believe I do too.
How did you guys get the help you needed? How did you convince a doc to listen?
BTW, it is so wonderfully encouraging to me to see that at least some people are getting help for this horrible condition.
Thanks for listening!


----------



## supakitty (Mar 6, 2002)

FishBounce- You're absolutely 100% welcome here with us. -Laura


----------



## Ruthla (Jun 2, 2004)

Sure you can lurk in here- or even post in here a lot!

I never bothered mentioning any of my symptoms to a dr at first because I thought they were just normal- it didn't occur to me that other people had more energy or less brain fog or anything like that. Then once I was in a chatroom with somebody who had FMS and I asked her about her condition, and realized I had many of the same symptoms. I did more online research about FMS, and at my next checkup I told my dr I suspected I had FMS and she referred me to a rhumatologist, who diagnosed me in my initial visit.


----------



## FishBounce (Dec 17, 2007)

Thank you for the welcome.
I am at a loss as what to do anymore. Its to the point that I am afraid to go to any doc because I have been labled as drug-seeking.
Here's my story:
I finally got fed up with living this way in March '06. I had about a month of time where I could not even lift a dish to wash it, nevermind holding my kids. So I called my doc and made an appt. When I told her my symptoms, she said that basically my problem is that I'm fat and crazy (I do have mental health issues stemming from childhood abuse) and that if I would only stop being fat and crazy, I'd be just fine. I asked to see the other doc at the practice. This one believed me! She started me on Ultram and Flexeril, plus a course of physical therapy. Oh what a difference! She sent me to the UCONN rhuematology dept. At my appt there, as soon as they saw the meds I was on (anti-depressants, stuff for sleep and migraines) they ended the visit right then and there. They didn't even attempt to examine me. They said it was my mental health and to see my shrink. So frustrating! I still cry just remembering it. I went to my shrink who said it couldn't be my mental health as it was well under control, and to see my regular doc. I went back there and was told that the one I was seeing was let go. So basically, I was S.O.L. Since then, the few times I have gone to the doc, they completely dismiss me as a junkie. Doesn't matter that my last visit was for a sinus infection, KWIM? I am so afraid to look for a new doc. I hate being treated like this and feel helpless.
OK sorry for the whining. Its been a hard day today. Thanks again for listening. Much love to anyone going through this!


----------



## supakitty (Mar 6, 2002)

Blergh, what a typical and awful story of healthcare people demoralizing a patient. All I can say to you as a fellow sufferer and a healthcare provider is that I'm sorry you were treated this way and I would encourage you to look for a different healthcare provider. I am so deeply disillusioned by the heathcare industry and I vow never to treat anyone the way you (and I) and so many others have been treated.

Hang in there, mama. We're here for you!

-Laura

PS. Is anyone here taking Lyrica?


----------



## Jeanne D'Arc (Apr 7, 2007)

For those of you who have tried reducing chemicals ,allergens
and diet and have found no relief you may want to
consider a pathogenic cause to your misery.

I have tested positive for mycoplasma, candida, mold
and soon will be getting a special lyme test.

For me i know chemicals contribute so i stay away
from them, plus allergies. But if you do not address
a possible systemic infection you may never feel
any better.


----------



## zonapellucida (Jul 16, 2004)

Quote:


Originally Posted by *supakitty* 
Blergh, what a typical and awful story of healthcare people demoralizing a patient. All I can say to you as a fellow sufferer and a healthcare provider is that I'm sorry you were treated this way and I would encourage you to look for a different healthcare provider. I am so deeply disillusioned by the heathcare industry and I vow never to treat anyone the way you (and I) and so many others have been treated.

Hang in there, mama. We're here for you!

-Laura

PS. Is anyone here taking Lyrica?


I started it and found it rather useless. Preggo now so I am taking NOTHING but hot baths with epsom salt and using trigger point therapy.

I wanted to add I had a positive Lymes test years ago and now the Dr here in FL is saying I am negative. The person who did the western blot is highly trustworthy so sometimes I don't know what my problem is.


----------



## umami_mommy (May 2, 2004)

typing one handed here.... my ND put me on 1000 mg of calcium & magnesium (chelated), 1000 mg of vitamin D, B 50 complex and st. john's wort. and stuff for my thyroid and adrenals too... and i am feeling SO MUCH BETTER.

my constant aches and pain are just about gone. (been on SJW for about 2.5 months along with 4 g of fish oil a day too... the fish oil really helped too with the pain, i noticed that first.)


----------



## Ruthla (Jun 2, 2004)

I was given a prescription for Lyrica but I researched the potential side effects and decided it wasn't worth the risk for me right now. Specifically weight gain- I've just lost 20 lbs and I need to lose 20-30 more, and I just don't want to start taking something that could risk that.

Plus I started a GF diet and I'm feeling a little better. Actualy, I cut out a number of things- all grains, all dairy, and all legumes, along with continuing to avoid synthetic colors, flavors, preservatives, and sweeteners. I'm on a very simple diet and it's providing modest relief.


----------



## FishBounce (Dec 17, 2007)

Just wanted to share this because I think we can all relate and I found it helpful with the family explanations.
Just a word: the author is discussing lupus but the principles are the same.

So here's the link. It is a couple of pages to read, not too bad.

http://www.butyoudontlooksick.com/the_spoon_theory/


----------



## Phoenix~Mama (Dec 24, 2007)

hehe I actually posted a link to the butyoudontlooksick.com site a page or so ago.

Christine is awesome. I found the Spoon Theory years ago and have been a part of that board since Christine started it. She is an awesome and courageous woman. I give the Spoon Theory link to pretty much anyone I meet with a chronic illness because no matter what your illness name is... it's the same for anyone with a chronic condition.


----------



## Blooming (Feb 16, 2006)

How is everyone feeling today? I'm in and out of bed. Trying to do stuff then, resting. I'm wiped out from a long weekend with family.

All I want to do is snuggle up with my book and heating pad.

I did write for an hour today on my book. So I'm happy about that.


----------



## supakitty (Mar 6, 2002)

I'm stressing out because I have to go back to work next week after 3 months of being sick and having a miscarriage... sometimes I cry just wondering how I will cope. I think one thing that drives me crazy on very bad days (like last night) is trying to lay in bed and not being able to be comfortable or without pain. I am going to ask my doctor for Lyrica tomorrow, I at least want to try it.

Blergh.

-Laura


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
I'm stressing out because I have to go back to work next week after 3 months of being sick and having a miscarriage... sometimes I cry just wondering how I will cope. I think one thing that drives me crazy on very bad days (like last night) is trying to lay in bed and not being able to be comfortable or without pain. I am going to ask my doctor for Lyrica tomorrow, I at least want to try it.

Blergh.

-Laura

Oh Laura, I'm so sorry. Hugs to you. If you ever need to chat feel free to pm me.
I understand the feeling of crying and just not knowing how your going to cope. It is a horrible feeling.
I'm sending you love and Light.......


----------



## FishBounce (Dec 17, 2007)

I'm better today than I have been in a few weeks. DH called out to help me today.







I need to get caught up on my housework BIG TIME!! I just love that his boss understands our situ and allows him to pick up exrta hours after he needs to be here to help.


----------



## Phoenix~Mama (Dec 24, 2007)

Lots of hugs to you Laura! *hugs* I hope the return to work will go okay. It's never easy.


----------



## supakitty (Mar 6, 2002)

I am so flippin grateful for this thread and all the loving people here. Thanks for the kind words. Thank you, thank you, thank you. Can I bring you all to work with me for moral support?

Speaking of support, does anyone here go to local support groups for FMS?


----------



## Blooming (Feb 16, 2006)

I don't but I think I might start. I know someone who wants to hold them.

They will also be for people suffering PTSD.

I'm a bit nervous but I'm going to try my best to go.


----------



## Phoenix~Mama (Dec 24, 2007)

I don't currently attend support meetings, but I have been to them in the past. Sometimes they had some good information, sometimes not so much...

I found better support through various online communities. *nods* It's easier on me too sitting comfy at home chatting to people online than bundling up and driving to sit at a meeting in an uncomfy chair.


----------



## supakitty (Mar 6, 2002)

Hey mamas, just checking in. I'm going next week to a clinic in New Hampshire for an evaluation and then detox and cleansing. It's these people: http://www.dadamoinstitute.com/ - has anyone here heard of them? My cousin thinks they are amazing.

You know what's bumming me out recently, it's the day-to-day living with this problem. It's the long-term accepting that it won't magically go away no matter how tired I am or my family is of it. It's the stages of grief I suppose, I feel like I'm between anger and depression and occasionally acceptance.

1. Denial: The initial stage: "It can't be happening."
2. Anger: "Why me? It's not fair."
3. Bargaining: "Just let me live to see my children graduate."
4. Depression: "I'm so sad, why bother with anything?"
5. Acceptance: "It's going to be OK."

Where are you?

-Laura


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
Hey mamas, just checking in. I'm going next week to a clinic in New Hampshire for an evaluation and then detox and cleansing. It's these people: http://www.dadamoinstitute.com/ - has anyone here heard of them? My cousin thinks they are amazing.

You know what's bumming me out recently, it's the day-to-day living with this problem. It's the long-term accepting that it won't magically go away no matter how tired I am or my family is of it. It's the stages of grief I suppose, I feel like I'm between anger and depression and occasionally acceptance.

1. Denial: The initial stage: "It can't be happening."
2. Anger: "Why me? It's not fair."
3. Bargaining: "Just let me live to see my children graduate."
4. Depression: "I'm so sad, why bother with anything?"
5. Acceptance: "It's going to be OK."

Where are you?

-Laura

You know for me I can be in any of these places on any given day. Today I was a bit depressed and angry.
DH had to miss work and I didn't leave my bed. I could tell how frustrated he was, and that made me feel guilty.
I often feel that I have failed him.

Tomorrow I am going to try and have an acceptance day. I know I am in the middle of a flair. I know that. So I am going to cut all corners I can and try to be okay with it.

I hope your treatment goes well. You'll have to let us know what your expereince is like.

My doctor is going to test me for excess amount of metals next. We'll see, she says some people with Fibro have high metal levels.

Heres hoping everyone is feeling well.....


----------



## supakitty (Mar 6, 2002)

Just thinking today and feeling kinda down, maybe afraid to be hopeful?

Chronic Illness 2

When did I tell the phone to stop ringing,
The clock to stop ticking,
The world to stop spinning?

What day did I wake up and make these decisions,
What day was it that my life began to end?

When did I stop looking forward to the future?
When did each day begin to feel like a difficult challenge?
When is the last time I enjoyed a moment?

When was the last time I sat quietly with myself?
Put my face to the sun and felt myself smile deep down inside,
When was the last time I did something simple, and it was simple?

What day was it that I woke up this way?
Will the day come when I wake up and feel like myself again?
I hope so,
It's all the hope I have left.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Blooming* 
You know for me I can be in any of these places on any given day.

Yes.

The more I learn, the angrier I get at all the things that _could_ be responsible for my illness.

But I'm really glad the internet exists, because without it I would not have had access to the information I now have.

I realized that I probably had adrenal fatigue for 20 years, though I've only been diagnosed for about 3.

I've had hypo for about 10 or 11 years, diagnosed for about 7.

Fibro for 2 to 3, diagnosed, and I'm still not so sure fibro and adrenal fatigue aren't the same thing.

I get really angry that all of my illnesses are 'invisible ailments,' the kind that people don't believe. So many other illnesses are obvious and you at least get some compassion. With this one, most people treat you like you are faking, or scamming, or exaggerating, or just plain crazy.

To me, anger if preferable to self pity. And there are a lot of people to be angry with. Doctors and pharmaceutical companies who don't care, who keep us sick and keep making money. The FDA, who sells us out at every turn. Various manufacturers who poison our environment and affect our endocrine and nervous systems. Hell, yeah, I'm pissed off. *These people poisoned me, and they make money doing it.

*They profit while I live like a hermit and search for the latest answer to my _mystery_ illness. Except it isn't really a mystery. The mystery is, why haven't we all banded together to outlaw all of these poisons?

Pharmaceuticals are processed with chlorine and fluoride.
Perfumes and artificial scents are full of the same toxins as cigarette smoke, _yet they are unregulated,_ unlike smoke.
Water and food are contaminated with chemicals and hormones.

People have _mystery_ ailments? To me, the mystery is, how come _everybody_ isn't sick?


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
Yes.

The more I learn, the angrier I get at all the things that _could_ be responsible for my illness.

But I'm really glad the internet exists, because without it I would not have had access to the information I now have.

I realized that I probably had adrenal fatigue for 20 years, though I've only been diagnosed for about 3.

I've had hypo for about 10 or 11 years, diagnosed for about 7.

Fibro for 2 to 3, diagnosed, and I'm still not so sure fibro and adrenal fatigue aren't the same thing.

I get really angry that all of my illnesses are 'invisible ailments,' the kind that people don't believe. So many other illnesses are obvious and you at least get some compassion. With this one, most people treat you like you are faking, or scamming, or exaggerating, or just plain crazy.

To me, anger if preferable to self pity. And there are a lot of people to be angry with. Doctors and pharmaceutical companies who don't care, who keep us sick and keep making money. The FDA, who sells us out at every turn. Various manufacturers who poison our environment and affect our endocrine and nervous systems. Hell, yeah, I'm pissed off. *These people poisoned me, and they make money doing it.

*They profit while I live like a hermit and search for the latest answer to my _mystery_ illness. Except it isn't really a mystery. The mystery is, why haven't we all banded together to outlaw all of these poisons?

Pharmaceuticals are processed with chlorine and fluoride.
Perfumes and artificial scents are full of the same toxins as cigarette smoke, _yet they are unregulated,_ unlike smoke.
Water and food are contaminated with chemicals and hormones.

People have _mystery_ ailments? To me, the mystery is, how come _everybody_ isn't sick?

I'm with you. Sending you all love.....................

Laura-your poems express so much of what I feel but don't want to say. or face.


----------



## onetwoten (Aug 13, 2007)

Just wanted to add my voice to you ladies. I starting feeling my symptoms bang all of a sudden in April of 2006. Went from being fine, to needing naps every single day, and sleepin anytime I was home alone. Some days all I would do was curl up in a blanket on the computer and not move. Some days I would get hungry, but the thought of having to actually go make food was exhausting, so I just didn't eat.

The scariest for me were those "whoa moments" that I saw someone else on here describe- where it was like I was doing ok, and then out of nowhere I could *feel* my brain tell me- "we need to get home. Now. Right now. I'm shutting down, and if you don't go quickly, I'm going to pass out right here on the sidewalk." Fh is pretty good now at reading me, and if I look at him and tell him I Need to go home, he knows, and we go quickly.

I hate the weakness and dizziness that sneaks up on you like that. Where I'll be fine, and then my body just shuts. down. and it's all I can do not to collapse onto the floor. I fit the chronic fatigue portion more than I do the fibro. I have pain, but it is not my primary complaint.

I started seeing my dr for this last summer. After convincing her that is WASN'T just me starving myself, or depression, she started out with me on a path to figure out what was wrong. I didn't voice my suspicians the first couple visits until she finally turned t me one day and said "I don't want to say this, but I think we need to seriously consider chronic fatigue". I wanted to cry from relief that day leaving the office, because I felt like it wasn't in my head.

All in all, I've had probably 12 vials of blood taken, 3 urine tests, a CT scan, neuro consult and tests, sleeping pills and antidepressants. Nothing came up abnormal, and it's been left at an unofficial diagnosis of CF. She told me she didn't want to put it in my file or "officially" say it, because I was "too young" to have to deal with that haunting my life, when writing the diagnosis down wouldn't fix me. I thought she was nuts until I had to fill out the health questionaire for my mortgage and thanked my lucky stars I had 'nothing to report'.

I'm dealing with it day by day. Been having a pretty good 2 months. I've been eating better since moving in with FH, less preservatives. I had my first BAD day yesterday, and it was absolutely brought on by stress. I'm going to try to make it longer before the next one.

Thanks for this thread ladies. I'll be following all of you


----------



## Ruthla (Jun 2, 2004)

I'm having a hard time today too. I'm just feeling tired and dizzy and "out of it" and have been feeling like that all day.


----------



## spiderdust (Oct 3, 2005)

I'm right there with you today, Ruthla.

All of my muscles feel like they're on fire and I can't find a comfortable position.


----------



## Strong Mama (Feb 7, 2006)

Hi. I think I have fibro. I am going to the dr. on Thursday to find out what is wrong with me. From what I am reading, it sounds like fibro. It started after the birth of my son. I thought it was hormone related, and I did have PPD, so I blew it off as that, then I got on hormonal BC, thought it was that, got off that, and I still feel the same. I feel pretty good today, and yesterday I felt good, but the last 5 days before I felt like crapola. My question is, how did you get a diagnosis? This illness is *invisible* and drs dont know a lot about it, how did you get the answer of fibro in the end? I ask because, I need to know how to bring this up at the drs or should I bring it up? Thanks!


----------



## Brigianna (Mar 13, 2006)

i had the dr appt. from hell the other day. uav dr. told me i didn't have fibro, but "severe depression" and should see a psychiatrist. ugh. some days the people are worse than the pain...


----------



## Blooming (Feb 16, 2006)

I hope everyone is feeling better. I am having a craptastic morning. I couldn't sleep last night, I felt like every bone and muscle was locked like a board.
Now I just hurt.

Transitions- Other then the birth control I had the same expereonce as you did, I first suffrerd from PPD and then it landslided into fibro. It took a while for my doctor to diagnose me but after a while she did. I went to my family doctor, and I just kept going back over and over again, taking test after test, until finally she felt confident it was fibro. Now we are struggling with how to deal with it as none of the pain meds seem to be helping. Although one of the muscle relaxers does help but after 2 years I am building up a bit of a tolrence.

I'm glad you found us, welcome.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Brigianna* 
i had the dr appt. from hell the other day. uav dr. told me i didn't have fibro, but "severe depression" and should see a psychiatrist. ugh. some days the people are worse than the pain...

I had a doctor tell me this once. Write them off. They don't know what they are talking about. I think Fibro is in the same place depression was a short time ago. People used to think that wasn't real either now everyone has it. There is still so much research to be done on Fibro. I think many doctors don't know enough about it to help so they pull the depression card out.

I am sorry you had that expereince. It's bad enough to be in pain but to then have someone say your not, well that is just salt in an open wound. Hugs.


----------



## umami_mommy (May 2, 2004)

Quote:


Originally Posted by *Blooming* 
I had a doctor tell me this once. Write them off. They don't know what they are talking about. I think Fibro is in the same place depression was a short time ago. People used to think that wasn't real either now everyone has it. There is still so much research to be done on Fibro. I think many doctors don't know enough about it to help so they pull the depression card out.

I am sorry you had that expereince. It's bad enough to be in pain but to then have someone say your not, well that is just salt in an open wound. Hugs.


actually, the naturopath said much of the same things she recommends for fibro and depression are the same. she believes they and adrenal and thyroid functioning are all related and interconnected.

i went to see her about severe depression and then asked about fibro treatments. as my depression improved, so did my pain levels.


----------



## umami_mommy (May 2, 2004)

i have noticed that any time a high pressure system moves in i feel really rotten. i usually get a headache that starts in my ears and sinuses, moves down to my neck and then actually goes down my arms to fingers and down my back to my hips and sometimes even my legs.

and i get all confused and sleepy.

not sure what to do, hard to nap with an 11 month old and a 5 yo.

anyone else feel crappy when the weather changes?


----------



## Ruthla (Jun 2, 2004)

Brigiana

I feel crappy whenever a LOW pressure system comes in- I typically feel pretty good with high pressure weather systems. Low pressure systems come with storms and stuff, high pressure systems are clear days.

Do you feel worse on the bright, clear days, and better when it's rainy or threatening rain, or did you get the terminology mixed up?


----------



## umami_mommy (May 2, 2004)

Quote:


Originally Posted by *Ruthla* 







Brigiana

I feel crappy whenever a LOW pressure system comes in- I typically feel pretty good with high pressure weather systems. Low pressure systems come with storms and stuff, high pressure systems are clear days.

Do you feel worse on the bright, clear days, and better when it's rainy or threatening rain, or did you get the terminology mixed up?

i feel worse when the leading edge of a high pressure system is moving through.... when the barometric pressure is rising. (i'm a weather geek, so no i'm not getting it mixed up)


----------



## spiderdust (Oct 3, 2005)

Yes, the weather is a BIG factor for me. Like the song says, rainy days and Mondays always get me down.







:

Sometimes my joints feel better after the rain finally comes, but not always.


----------



## Jeanne D'Arc (Apr 7, 2007)

When the full documentary comes out I really recommend
all of you watch it, here is a little 5-10 minute trailer
of the full documentary.

I also recommend the info on the web page. Enjoy

Under our Skin


----------



## ipfree (Oct 4, 2006)

I am so sorry you Mommas have to live in pain ... yes it sucks and this is a fabulous place to gain strength and carry on. To gain valuable information and support. My dearest friend Amy Donaldson died of breast cancer last June. She always felt so much better after chatting with you Mamas on MDC. Jessica - mighty-mama sadly also passed last month. I mention them because these two phenomenal ladies have given me strength that I didn't even know I had hidden. I was just diagnosed with Rheumatoid Arthritis and this Fibromyalgia thread is the closest I have found.
Thank you so much for voicing your beautiful thoughts and reaching out and bringing us together.
Yes the weather plays a huge part in RA pain. I can't wait for the warmer weather.
Also these are the things that have helped me: good pharmaceutical grade Omega 3-6-9, MSM, Castor Oil rub on swollen joints. I found out that dairy makes some forms of Arthritis worse, and living dairy free helps me. I also gave up meat and sugar. I am learning to cook lots of Indian and Japanese foods ... all a perk of getting my body back to health.








I wish you Mamas a healthy, happy day that is full of laughter or a good dose of rest to heal heal heal!


----------



## umami_mommy (May 2, 2004)

Quote:


Originally Posted by *ipfree* 
I found out that dairy makes some forms of Arthritis worse, and living dairy free helps me. I also gave up meat and sugar. I am learning to cook lots of Indian and Japanese foods ... all a perk of getting my body back to health.








I wish you Mamas a healthy, happy day that is full of laughter or a good dose of rest to heal heal heal!

i have a friend with RA that just went wheat free in addition to dairy free, and she is AMAZED at how much better she feels. her headaches (plaguing her for most of her life), disappeared in a few days and she is sleeping better and craving less bad for you foods. she needs to lose about 100 pounds and so the dietary have helped a lot with that goal too.

you might want to try that too. she is also taking magnesium, 1200 IU of vitamin D and and a herb called devil's claw.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *honeybeedreams* 
actually, the naturopath said much of the same things she recommends for fibro and depression are the same. she believes they and adrenal and thyroid functioning are all related and interconnected.

i went to see her about severe depression and then asked about fibro treatments. as my depression improved, so did my pain levels.

I don't doubt that depression is an ingredient in this big old bowl we call Fibromyalgia. I just get upset when people brush it off as just depression. When this happens I have felt that my other pains are not being acknowledged. Never mind supported or treated.

It can also lead to the attitude that sense it is just depression you need to pick your self up by the bootstraps and deal with it.

It is great that you have found someone that sees they all play together. I believe that for me that kind of treatment would be ideal. I hope one day to have that opportunity.

I hope this doesn't come across the wrong way, I am not saying this in a mean tone, just clarifying my former post which did speak with a tone defensiveness. I felt bad that Brigianna had been brushed off, and it also brought up a similar memory for me.

Hope you are well today


----------



## umami_mommy (May 2, 2004)

blooming, where do you live that you can't find a naturopath?

they are technically illegal in NY. but DOH seems to leave them alone. (so they can harass the midwives i guess)

so, i guess what i'm saying maybe someone can help you find someone who practices holistic medicine or is a naturopath.

has anyone here read "spontaneous healing" by dr. weil?


----------



## Blooming (Feb 16, 2006)

I actually live in a place where there are lots of naturopaths. Unfortunatly my insurance doesn't cover them and they tend to charge more then we can afford.

Hopefully that will change. But with DH missing so much work to take care of us all I'm not sure when.

Today is a stuck in bed day for me so DH and I are having a hard time. We are both so frustrated with where we seem to be at.

I had no idea that naturopaths are illegal in New York, I used to live there.

I am going to check out that book you mentioned on amazon.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *ipfree* 
I am so sorry you Mommas have to live in pain ... yes it sucks and this is a fabulous place to gain strength and carry on. To gain valuable information and support. My dearest friend Amy Donaldson died of breast cancer last June. She always felt so much better after chatting with you Mamas on MDC. Jessica - mighty-mama sadly also passed last month. I mention them because these two phenomenal ladies have given me strength that I didn't even know I had hidden. I was just diagnosed with Rheumatoid Arthritis and this Fibromyalgia thread is the closest I have found.
Thank you so much for voicing your beautiful thoughts and reaching out and bringing us together.
Yes the weather plays a huge part in RA pain. I can't wait for the warmer weather.
Also these are the things that have helped me: good pharmaceutical grade Omega 3-6-9, MSM, Castor Oil rub on swollen joints. I found out that dairy makes some forms of Arthritis worse, and living dairy free helps me. I also gave up meat and sugar. I am learning to cook lots of Indian and Japanese foods ... all a perk of getting my body back to health.








I wish you Mamas a healthy, happy day that is full of laughter or a good dose of rest to heal heal heal!

Welcome mama. Hugs for all you are going through both with your RA and with missing Amy and Jessica.

We may not all suffer from the same symptoms but we all understand chronic pain and how hard it is to deal with. I hope you can find support and strength here.

I am really going to have to try the omegas, so many people have had good things to say about them.

I have also been using arnica rub on some of my joints.


----------



## supakitty (Mar 6, 2002)

Quote:


Originally Posted by *Blooming* 
It can also lead to the attitude that sense it is just depression you need to pick your self up by the bootstraps and deal with it.

This comment really resonates with me. It is so true that people, be it family or friends or heathcare providers, can sometimes take a cavalier attiude about a persons condition like _Is it really so bad, can't we just shake it off and go do something fun, maybe if you had a hobby you would feel better, etc._ I noticed at first there were a lot of caring and concerned people but over time they just seemed to grow tired of me not wanting to go out for a beer or to the movies or whatever it is that I'm not up for and they become resentful.

When a doctor leaves you cold like this just move on, truly. If they are worth another try because you have developed a relationship then perhaps acknowledge what they say but let them know that you don't agee. I get so frustrated when I see a physician and they wrap things up in their mind and feel better about it (you can watch it happening) but you're still sitting there in pain wondering how to get through the next minute, ten minutes, hour, day of your life and they're telling you to see them in 6 weeks for a follow-up -HUH? I think in those moments -What are you doing _right now_ for my pain and discomfort, that it hurts to sit here, that it hurts to drive home, that it hurts to lay in bed...

Here is my manifesto to all healthcare providers that we have to deal with:

We acknowledge that we are the owners and operators of these aching bodies. Thus, we willingly and wantingly take charge of our mental and physical health. We actively do the things that we find to be helpful such as exercise (so hard when you're in pain), dietary modification, hot baths, supplements, counseling, crying, cursing loudly (okay maybe that's just me) etc... We live with this condition every day and we are extremely well educated about it. We are not sitting on the couch eating bon-bons (okay maybe soy ice cream at times) in the interval times between visits. We are researching and communicating and educating ourselves and others. So, when we're asking for help, we certainly don't expect miracles (gave up that hope long ago!) for goodness sake we paid our damn co-pay the least you can do is try and be helpful (Oh, and suggesting that we take up a hobby like collecting stamps just isn't going to cut it this time!).

Love to all the mamas who belong here, we're all in this junky old boat together (I just wish it was a cruise to Jamaica instead!)


----------



## supakitty (Mar 6, 2002)

PS. I am in New Hampshire and I am going to the see the naturopathic clinic here this evening - wish me luck!

This is the place I'm going: www.dadamoinstitute.com


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Blooming* 
I don't doubt that depression is an ingredient in this big old bowl we call Fibromyalgia. I just get upset when people brush it off as just depression. When this happens I have felt that my other pains are not being acknowledged. Never mind supported or treated.

It can also lead to the attitude that sense it is just depression you need to pick your self up by the bootstraps and deal with it.

It is great that you have found someone that sees they all play together. I believe that for me that kind of treatment would be ideal. I hope one day to have that opportunity.

I hope this doesn't come across the wrong way, I am not saying this in a mean tone, just clarifying my former post which did speak with a tone defensiveness. I felt bad that Brigianna had been brushed off, and it also brought up a similar memory for me.

Hope you are well today

What grates on me is, depression is often a symptom of long term illness, not the actual disease. Maybe if doctors could tell us what was wrong before we spent several years being told we were crazy, lying, or being babies, we wouldn't have depression as a symptom, yk?


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
What grates on me is, depression is often a symptom of long term illness, not the actual disease. Maybe if doctors could tell us what was wrong before we spent several years being told we were crazy, lying, or being babies, we wouldn't have depression as a symptom, yk?

You know that thought has occurred to me to. Because this the life I signed up for. (Note sarcasm)

The other thought I have sometimes about the depression thing is that yeah, who the hell wouldn't be depressed when they are in pain everyday, disappointing their families, losing friends, already lost their job, lost their financial freedom, and don't know where your next meal is coming from. All thanks to this mystery illness so many of the medical professional refuse to acknowledge.

Ummmmm yeah I'm depressed and I dare say pissed that life has ended up here right now.

Supakitty-Good luck with your appointment tonight, I hope you find some light in this tunnel.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
It can also lead to the attitude that sense it is just depression you need to pick your self up by the bootstraps and deal with it.

Clinical depression isn't "just depression" and people suffering can't just "pick themselves up by the bootstraps and deal with it." It's a real illness and people suffering from it need real help.

I've found, however, that my own depression is just about gone now that I have the FMS diagnosis (and I'm getting SSI so my parents finally take me seriously.) I'm no longer trying to do things I can't do and getting depressed when I can't do them. I plan my life around my real physical limits and have a much easier time emotionally because I don't find myself overwhelmed as often.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Ruthla* 
Clinical depression isn't "just depression" and people suffering can't just "pick themselves up by the bootstraps and deal with it." It's a real illness and people suffering from it need real help.

I've found, however, that my own depression is just about gone now that I have the FMS diagnosis (and I'm getting SSI so my parents finally take me seriously.) I'm no longer trying to do things I can't do and getting depressed when I can't do them. I plan my life around my real physical limits and have a much easier time emotionally because I don't find myself overwhelmed as often.

Yeah. For me, _just having a name for what I have_ makes it easier to deal with.


----------



## Brigianna (Mar 13, 2006)

Quote:


Originally Posted by *Ruthla* 
Clinical depression isn't "just depression" and people suffering can't just "pick themselves up by the bootstraps and deal with it." It's a real illness and people suffering from it need real help.

I've found, however, that my own depression is just about gone now that I have the FMS diagnosis (and I'm getting SSI so my parents finally take me seriously.) I'm no longer trying to do things I can't do and getting depressed when I can't do them. I plan my life around my real physical limits and have a much easier time emotionally because I don't find myself overwhelmed as often.

I agree with this. I am much calmer and better off mentally when I know how to take care of myself physically.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla;10373056[B*
]Clinical depression isn't "just depression" and people suffering can't just "pick themselves up by the bootstraps and deal with it." It's a real illness and people suffering from it need real help.
[/B]
I've found, however, that my own depression is just about gone now that I have the FMS diagnosis (and I'm getting SSI so my parents finally take me seriously.) I'm no longer trying to do things I can't do and getting depressed when I can't do them. I plan my life around my real physical limits and have a much easier time emotionally because I don't find myself overwhelmed as often.

Bolding mine. I know this but it does not feel that the people around me do. I was speaking of what I have been told and heard from others.

As much as I would like to think people are more compassionate towards people with depression, anxiety, etc.... It just isn't so in my world.


----------



## umami_mommy (May 2, 2004)

Quote:


Originally Posted by *Blooming* 
I actually live in a place where there are lots of naturopaths. Unfortunatly my insurance doesn't cover them and they tend to charge more then we can afford.

when it comes to being sick and non-functional, i'm not sure if i can afford to *not* get the right help.

we are fairly house poor, after the bills there is almost no money left each month. but we figured out how to budget for 3 acupuncture appts. (we put the dentist off, i have been saving for a cap for 3 years now) and then put the naturopath on the credit card.

i can't put a price tag on being well and being able to care for my family. for me, there is no "i can't afford it" there is however, "i need some time to figure out how to make this work." and most alternative docs will work out a payment arrangement with you, esp if you are sick and have children. most are *happy* to do this.

i would strongly suggest you do whatever you need to do to pay for someone who will actually help you. all kinds of complementary medicine is covered by flex spending accounts... and well, even if conventional medicine *is* covered by your insurance, if it isn't making a difference, then it might as well not be covered for all the help it is for you.

good luck!


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *honeybeedreams* 
when it comes to being sick and non-functional, i'm not sure if i can afford to *not* get the right help.

we are fairly house poor, after the bills there is almost no money left each month. but we figured out how to budget for 3 acupuncture appts. (we put the dentist off, i have been saving for a cap for 3 years now) and then put the naturopath on the credit card.

i can't put a price tag on being well and being able to care for my family. for me, there is no "i can't afford it" there is however, "i need some time to figure out how to make this work." and most alternative docs will work out a payment arrangement with you, esp if you are sick and have children. most are *happy* to do this.

i would strongly suggest you do whatever you need to do to pay for someone who will actually help you. all kinds of complementary medicine is covered by flex spending accounts... and well, even if conventional medicine *is* covered by your insurance, if it isn't making a difference, then it might as well not be covered for all the help it is for you.

good luck!

It has been my impression that you need to see a naturopath fairly often is this true? This is just an I'm curious question.

I would rather not go into the money thing to much. I love the idea of finding some wiggle room for care for me, but when it comes down to winter coats for the kids and food on the table, I have to pick my children first. We are pretty much stuck in a rut right now. I think we may be climbing out soon. (Or at least I'm putting it out into the universe that we are







) Then I can finally do the things I know make me feel better such as cranal sacral, water therapy, and messages.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Transitions* 
Hi. I think I have fibro. I am going to the dr. on Thursday to find out what is wrong with me. From what I am reading, it sounds like fibro. It started after the birth of my son. I thought it was hormone related, and I did have PPD, so I blew it off as that, then I got on hormonal BC, thought it was that, got off that, and I still feel the same. I feel pretty good today, and yesterday I felt good, but the last 5 days before I felt like crapola. My question is, how did you get a diagnosis? This illness is *invisible* and drs dont know a lot about it, how did you get the answer of fibro in the end? I ask because, I need to know how to bring this up at the drs or should I bring it up? Thanks!

I learned about fibro from somebody on an internet chatroom- she had it and I asked her about it, and realized I had many of the same symptoms. I did more research on FMS (from links she gave me) and then the next time I saw my dr, I told her "I think I may have fibromyalgia" and she referred me to a rheumatologist. The rheumy diagnosed me on the first visit.


----------



## umami_mommy (May 2, 2004)

Quote:


Originally Posted by *Blooming* 
It has been my impression that you need to see a naturopath fairly often is this true? This is just an I'm curious question.


depends on the doc and the treatment. depends on your diagnosis too. to a naturopath, it's all just symptoms in the big picture.

so it would depend on what it would take to get one back in balance again.

the first naturopath i saw, i was working a crappy little job and i told the doc what i could afford and how often i could take time off of work to see him. and he worked within that framework. he was happy to. and he gave me a special rate on herbs and homeopathics. i think it never hurts to tell people what your limitations are. "hi i'd love to see you, but this is what i can afford. can we make that work?" staring there is never a bad thing.


----------



## RawGoddess (Jan 23, 2008)

Quote:


Originally Posted by *bigeyes* 
Are there any of you out there?
How does it affect your parenting?

I feel like I have limited energy for my children and they are shortchanged in so many ways because I just can't do all the things other moms can.

Do you talk to your children about it, and do they have an understanding of just how your illness limits you? Do they understand the difference between _not wanting to do things_ and _being unable to do things?_

Take lots of DHA and go Raw - watch your fibromyalgia disappear - I've seen it.

Give your body what it needs to end your nutritional deficiency and it will heal itself and then you can teach your children to 'respond with ability' instead of just taking pills and having a limited life.

Good luck


----------



## RawGoddess (Jan 23, 2008)

Quote:


Originally Posted by *Blooming* 
I have Fibro, I've had it for two years. I am still struggling with how to manage it. I am in pain a lot of the time, or sleeping.

It has effected my parenting and our lives in so many ways. I am only caring for my children by myself one day a week. DH works from home 2 days, and 2 days my child is in daycare. We have no family here and it seems very hard for most of my friends to understand. I look the same (except on really bad days when I have to use a cane).

I have talked to my 6 year old about it as it comes up, he was concerned that he would get it or I would die.

When things are really bad and I am in too much pain to move, we snuggle in for a good read or a movie night with popcorn,

DH does most of the down on the ground playing. He also does most of everything else. I do the best I can and hope that I will find a way to live with this illusive illness one day. For sure it sucks.

I'm not sure that right now the kiddos understand the diffrence but I hope in time they will.

Fibro is hard to deal with, perhaps we can start a tribe here.

Another good forum with good info is Daily strength.

Hugs to you. Oh and remember Fibro effects people diffrently you may not have it as badly as I do.

HI, you have a nutritional deficiency - lack of DHA, minerals and raw foods.

Alyssa Cohen and Aajonus Vonderplanitz I recommend to educate self on nutrition and what body crying out for.

Once changed lifestyle - problem no more.


----------



## blissful_maia (Feb 17, 2005)

Quote:


Originally Posted by *RawGoddess* 
HI, you have a nutritional deficiency - lack of DHA, minerals and raw foods.

Alyssa Cohen and Aajonus Vonderplanitz I recommend to educate self on nutrition and what body crying out for.

Once changed lifestyle - problem no more.

RawGoddess, I know you think you have good intentions, but I think what you're saying is a little bit undermining of the issues women here face. Some have tried everything and still deal with crippling pain and fatigue. This is mostly a support thread, and I think we are capable of looking for health advice on our own.








My name is Sabrina everyone. I am struggling a lot with fibromyalgia in my life currently (was dx when dd was 1 year old... she'll be 4 on next Monday). I look forward to gaining information and support on this thread, as well as lending some to women sharing the same experience as I do. It can be isolating, and forgotten IRL (mine, anyway).


----------



## bigeyes (Apr 5, 2007)

DHA didn't do anything for me.







I've tried all kinds of different dietary changes, but the problem is, what works for one person doesn't work for another.

Right now I feel like I'm doing pretty good compared to a couple of years ago, and in my case getting my thyroid meds raised made a huge difference. Cutting out soy and MSG and as many sulfates(sulfites?) as possible seems to be a big help as well. I think there are some hormonal relationships that aren't being explored by mainstream medicine, because working on my thyroid, adrenal and estrogen dominance issues cleared up a lot of my symptoms, where other people I know had some success with DHEA. Until they can figure out 100% what causes this, _one size fits all_ just doesn't work.


----------



## blissful_maia (Feb 17, 2005)

Quote:


Originally Posted by *bigeyes* 
Until they can figure out 100% what causes this, _one size fits all_ just doesn't work.









:


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *RawGoddess* 
HI, you have a nutritional deficiency - lack of DHA, minerals and raw foods.

I don't doubt that most of us probably have nutritional deficiencies- but it's rather simplistic to say that ALL of us need more DHA, minerals, and raw foods. We probably all have slightly different nutritional needs and no ONE dietary change will work for everybody.

Quote:


Originally Posted by *blissful_maia* 







My name is Sabrina everyone. I am struggling a lot with fibromyalgia in my life currently (was dx when dd was 1 year old... she'll be 4 on next Monday). I look forward to gaining information and support on this thread, as well as lending some to women sharing the same experience as I do. It can be isolating, and forgotten IRL (mine, anyway).


----------



## User101 (Mar 3, 2002)

Hey mamas! Just popping in with a gentle reminder that tribes are support only. If people were looking for general advice or information, they would post their questions in the proper forum. But this is for mamas with Fibromyalgia to chat, not a place for popping in with unsolicited advice. Thanks!


----------



## supakitty (Mar 6, 2002)

Quote:


Originally Posted by *supakitty* 

Here is my manifesto to all healthcare providers that we have to deal with:

We acknowledge that we are the owners and operators of these aching bodies. Thus, we willingly and wantingly take charge of our mental and physical health. We actively do the things that we find to be helpful such as exercise (so hard when you're in pain), dietary modification, hot baths, supplements, counseling, crying, cursing loudly (okay maybe that's just me) etc... We live with this condition every day and we are extremely well educated about it. We are not sitting on the couch eating bon-bons (okay maybe soy ice cream at times) in the interval times between visits. We are researching and communicating and educating ourselves and others. So, when we're asking for help, we certainly don't expect miracles (gave up that hope long ago!) for goodness sake we paid our damn co-pay the least you can do is try and be helpful (Oh, and suggesting that we take up a hobby like collecting stamps just isn't going to cut it this time!).

Oops, I now ammend this to include all well-intentioned people who think they have the magic cure!

-Laura


----------



## Jeanne D'Arc (Apr 7, 2007)

Quote:


Originally Posted by *blissful_maia* 
RawGoddess, I know you think you have good intentions, but I think what you're saying is a little bit undermining of the issues women here face. Some have tried everything and still deal with crippling pain and fatigue. This is mostly a support thread, and I think we are capable of looking for health advice on our own.








My name is Sabrina everyone. I am struggling a lot with fibromyalgia in my life currently (was dx when dd was 1 year old... she'll be 4 on next Monday). I look forward to gaining information and support on this thread, as well as lending some to women sharing the same experience as I do. It can be isolating, and forgotten IRL (mine, anyway).


Quote:


Originally Posted by *bigeyes* 
DHA didn't do anything for me.







I've tried all kinds of different dietary changes, but the problem is, what works for one person doesn't work for another.

Right now I feel like I'm doing pretty good compared to a couple of years ago, and in my case getting my thyroid meds raised made a huge difference. Cutting out soy and MSG and as many sulfates(sulfites?) as possible seems to be a big help as well. I think there are some hormonal relationships that aren't being explored by mainstream medicine, because working on my thyroid, adrenal and estrogen dominance issues cleared up a lot of my symptoms, where other people I know had some success with DHEA. Until they can figure out 100% what causes this, _one size fits all_ just doesn't work.


Quote:


Originally Posted by *blissful_maia* 







:


It is caused by pathogens people... and quite often more than one.
I guarantee most of you have one or more systemic infections thriving
in your body and sucking out your life force and energy.

The challenge is, getting rid of those infections...

*Every single person* with CFS/Fibro (including myself) I have seen undergo live blood
microscopy has been absolutely polluted! Some are infected with mold, some systemic
yeast, others Spirochetes (lyme), and if you are particularly lucky... all THREE. Add that to
parasites, bacteria and viruses...this in turn helps cause leaky gut, perpetuates autoimmune
responses,food and chemical sensitivities and a vicious cycle of auto-intoxication. These
infections also reap havoc upon endocrine systems, esp yeast and spirochetes.


----------



## Ruthla (Jun 2, 2004)

The pain in my shoulders kept me up last night- after a hot bath (helped sort of) then some topical antipain cream, then trying to sleep in the easy chair so there's less pressure on my shoulders- I wasn't able to fall asleep until I had some GF chocolate cake and a cup of instant decaf coffee- I'm not sure why but all those carbs seemed to temporarily soothe the pain. Then I got up this morning and slathered on two different kinds of topical pain releivers onto my shoulders- my shoulders are still kind of tingly from the meds but at least the pain is lessened.

Sigh. I haven't had one this bad since going gluten-free. I really don't think I ate anything that triggered this one- so either I ingested something that set me off (without the accompanying GI symptoms) or something non-food triggered this particular flare. Either way it sucks, but I'd like to know how it happened so I can prevent this in the future.

Plus I'm cranky from not feeling well and DD2 seems to be feeding off that negativity.


----------



## supakitty (Mar 6, 2002)

Ruthla - I hear you, my shoulders have completely seized up the past two night in a row. Do you get pain or trigger points over the triceps area? I noticed that I massaged those point so vigourously (because ther is so much pain there) that I actually left bruises. Are you using Arnica cream? It actually seems to help a lot. Hang in there mama, I hope today is tolerable for you.









-Laura


----------



## Ruthla (Jun 2, 2004)

No, it's not the tricepts, it's higher up, on the neck/top of the shoulders, and it hurts if I move my arms at all. I'm feeling a little better physically right now because I'm taking it easy, but my daughter is being completely impossible and I'm getting very tempted just SMACK her right now (not that I would ever do that, and it would certainly make me hurt more if I did, but she's just displaying SO MUCH negativity I'm not sure how to handle it.)


----------



## supakitty (Mar 6, 2002)

I know what that's like. Take some deep breaths. Is anyone else home who could help divert her attention? Glad to hear that taking it easy is helping, just remember that you're doing the best you can. It's a simple thing to say but it helps me get through the day.


----------



## Ruthla (Jun 2, 2004)

Her tantrum seems to have finally blown itself out. DS is now outside so he's no longer bugging her. I looked out the back window and he's on our swingset with the 5yo from across the street, and the 4yo, 1yo, and mom from next door.


----------



## Blooming (Feb 16, 2006)

Hugs Ruthla, I hope you feel better soon. The pain is hard enough to deal with but to attempt to care for others can near impossible.

We have been watching movie after movie this weekend. I went in Friday for a shot of tramadol and will be going back monday for another.


----------



## Strong Mama (Feb 7, 2006)

Im sorry I havent been back to post about my dr appt, i have been down in the dumps. I didnt mention fibro, as this was my first visit with this dr, didnt want seem the patient that knows it all. He did a full blood test, etc, then told me if those came back normal he wanted to put me on prozac, to help me lose weight and for the anxiety/depression issues.







Blood tests all came back normal, thank goodness, but now Im prescribed prozac, dont know whether to take it or not, and my other issues are still not addressed. I am supposed to go back to him in 4 weeks to see how the meds are doing me. I havent taken them yet, as I dont know if I should or not and still feel very confused. Never did get any diagnosis.







: Suggestions?? I have had a rough week, too.


----------



## supakitty (Mar 6, 2002)

Transitions







I guess the question you need to ask yourself is this - Are you depressed and/or anxious? I mean do you feel that you suffer from these conditions? If so, then perhaps the Prozac is a good idea. Of course there are other medications for depression you could consider as well as St. John's Wort OTC. It's your body, you know it best, so listen to what it is telling you.

-Laura


----------



## Strong Mama (Feb 7, 2006)

Thanks Laura, hmmm I dont know. I mean, I did suffer from PPD, but I didnt feel sad, depressed, more like anger. I do suffer bad days, I need to start journalling my feelings to see the pattern, but mostly I feel like its my surroundings and people that make me upset, but then, I shouldnt let that happen.I have always had anxious feelings, all my life, really. It is hereditary. But also, I have all these other symptoms, too. I dont know what to do, its so confusing, i just want to feel better.


----------



## supakitty (Mar 6, 2002)

Sometimes, or I should say, oftentimes a person will suffer from a so-called reactive depression from the effects of feeling badly. I suffer from this. I feel very depressed on the days that I feel really bad. I take Zoloft because I figure at this point depression is depression no matter the cause. However, I often think that if I were to wake up tomorrow morning and have zero pain and feel great that I wouldn't suffer from depression.

What symptoms are you dealing with and how are you treating them?


----------



## Strong Mama (Feb 7, 2006)

Some of my other symptoms that occur on a weekly basis are
dizziness
sharp pain in my lower right side near my groin area
bruised tender feelings all over my body, but mostly back of my arms and shoulders
painful knees
foggy head
fall asleep great but dont stay asleep, usually up at 4am

I dont really do anything for these, I do take ibuprofen when needed, but for the most part I just deal with it. Some of these symptoms could also be symptoms of chronic depression though.


----------



## Ruthla (Jun 2, 2004)

Sometimes antidepressants are used to treat FMS- apparently people with FMS also have low seratonin and SSRIs can offer some releif, even if depression isn't really the problem. I personally prefer to take 5-HTP rather than Prozac.


----------



## Blooming (Feb 16, 2006)

Hey mamas, things have been tough around here lately. DH has been home for almost 2 weeks. We were at the DR again today. We are trying to wean off the narcotics (some of them). Then also discovered I have a Vitamin D deficiency. The DR said it should take about a month but hopefully it will help me with some of the pain.

I hope you are all well.

Hugs.


----------



## Ruthla (Jun 2, 2004)

I'm feeling better today. The flare I was in last week seems to have lifted (and DD is most definitely in a better mood!)


----------



## Indigo73 (Aug 2, 2002)

I had one of the worse flairs, I've had in years last week. I am starting to feel better.

Mainly trying not get overwhelmed by personal and work emails. Have over 1000 emails to wade through. May take days. The biggest bummer is, I may have missed an opportunity for a free dining room table through freecycle because I didn't get back to the giver in time.


----------



## Brigianna (Mar 13, 2006)

I'm feeling oddly productive today! I vacuumed, did laundry, and cooked actual cookable food. After two weeks of miserable inert shoot-me-now total miserableness package. See? I can too take charge of my body!

You know, for today...


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Indigo73* 
I had one of the worse flairs, I've had in years last week. I am starting to feel better.

Mainly trying not get overwhelmed by personal and work emails. Have over 1000 emails to wade through. May take days. The biggest bummer is, I may have missed an opportunity for a free dining room table through freecycle because I didn't get back to the giver in time.

















I'm glad you're starting to feel better. Sorry about the table.

Do you have Freecycle emails sent directly to your inbox? You might want to change your settings so you check online, or at least have "daily digest" so that Freecycle becomes ONE email, not a few hundred a day.

Quote:


Originally Posted by *Brigianna* 
I'm feeling oddly productive today! I vacuumed, did laundry, and cooked actual cookable food. After two weeks of miserable inert shoot-me-now total miserableness package. See? I can too take charge of my body!

You know, for today...

Whoohoo! I love when I have days like that!

Just be careful not to overdo things- if you feel you need a rest, or to completely stop work for the day, listen to your body.


----------



## Brigianna (Mar 13, 2006)

oh yes, I'm lying down again... at least I'm now lying down with a clean floor and clean clothes and some clean dishes, so there's an improvement there at least...


----------



## Brigianna (Mar 13, 2006)

Quote:


Originally Posted by *Ruthla* 
Just be careful not to overdo things- if you feel you need a rest, or to completely stop work for the day, listen to your body.

Note to self: for future reference, listen to Ruth.








← what I have apparently done to myself.


----------



## Blooming (Feb 16, 2006)

Mamas can you help me-

Here is the deal, 3 weeks ago I was triggered by stress into a flare uunlike anything I have ever seen. I am very medicated. i keep going in for shots of naubetrin. I am up and down inbetween anxiety and depression. Today I can't walk, from the neck down I am really week and feel like I need a wheelchair. I don't know what ot do the sedatives amd muscle relexers seem to be making my moods really bad.

Should I go ti the hospital? Everyday I get worse. DH is on a leave of abscence because I can't even get the bathroom.

Have you expreinced this? God I hurt in every way in every place and
i can't see a way out.


----------



## Ruthla (Jun 2, 2004)

If you can't even walk, seeing a dr/hospital isnt' a bad idea. There might be something going on besides a bad flare (bad reaction to medications maybe?) that needs to be figured out and treated.


----------



## supakitty (Mar 6, 2002)

Quote:


Originally Posted by *Blooming* 
Mamas can you help me-

Here is the deal, 3 weeks ago I was triggered by stress into a flare uunlike anything I have ever seen. I am very medicated. i keep going in for shots of naubetrin. I am up and down inbetween anxiety and depression. Today I can't walk, from the neck down I am really week and feel like I need a wheelchair. I don't know what ot do the sedatives amd muscle relexers seem to be making my moods really bad.

Should I go ti the hospital? Everyday I get worse. DH is on a leave of abscence because I can't even get the bathroom.

Have you expreinced this? God I hurt in every way in every place and
i can't see a way out.

I have been exactly and I mean _exactly_ where you are. I hope you are out of this soon.

-Laura


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
I have been exactly and I mean _exactly_ where you are. I hope you are out of this soon.

-Laura

Laura,

How long did it take you to get out of it? Any tips on how to care for myself while I wait for it to pass?
I'm sorry you have expereinced this too. I never knew it could be this bad. I'm trying not to be scared but with the mood swings it is very hard.
I should probably go to the hospital but I'm a bit scared.
Jenn


----------



## supakitty (Mar 6, 2002)

Jenn- It happened to me when I was pregnant and it lasted about a month. I'm certain it lasted longer because I was pregnant, I wouldn't expect you to have to tolerate this for that long. All I did was pray for sleep, it was my only escape. Tramadol seemed to help bring the pain down to a more tolerable level, do you have any? It can be dosed quite frequently and really did help. These days I take Ativan to calm down the _help-me-before-I-jump-out- of-my-f*cking-skin feeling_. I know it isn't much but to know that you are suffering this way honestly makes me want to cry, I am thinking so much about you and wishing and praying that you have a better day tomorrow.

If you feel that you need to go to the ER then you should go. If you have a primary or rheumatologist that you see regularly try calling the on-call service for some guidance about going to the ER vs. an appt in the AM.

*big-gentle-hugs-to-you*

-Laura


----------



## supakitty (Mar 6, 2002)

Jenn - I'm thinking of you, hoping you're doing okay.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
Jenn - I'm thinking of you, hoping you're doing okay.









Thanks Laura. Still stuck. I am trying so hard to get out of this but I must admit I am losing hope.

I am now on clonzepam
Loranzapam
Buspar
Tramadol
Tylenol PMs
and shots here and there

Please pray I make it out of this. Tomorrow my baby turns 3 and all I want is to be his mommy.

Monday I see the reumithologist.
I'm also pretty certain I am sliding into a deep depression that needs to be medicated but don't know what to do about that.

So many tears............Jenn


----------



## supakitty (Mar 6, 2002)

Jenn,
Don't lose hope, it will pass. I know how hard it is. I know all the mamas here know where you are right now in terms of severity of symptoms. I pray that you find some joy in anything, something small today. Hang in there. You will make it through this. Let go of the mama guilt (I know all about that feeling), your family knows that you love them and that this isn't your fault. You're doing the best you can right now.

-Laura


----------



## sarahandlily (Jan 14, 2007)

where did you get the best info on fibro? please send me website links, book titles, articles, ect.

what do you find works best to help YOU manage/cope day to day? and what does not? i know we are all so different when it comes to fibro on what helps and what doesn't, but i would like to know what works for you as i continue to do my own research.

i am 27 with 3 kiddos and getting worse and worse over the past 10 years. my mom has it too and i am already way worse that she is. i used to be an athlete so feeling weak and puny is a death sentence in and of itself. any info would be helpful. i get discouraged trying to weed through the crap and fads to find the good info. i have a 3 month old with severe colic, a 18 month old, and a 5 year old. trying to find time on the computer is all but impossible lately.

thanks so much!
sarah


----------



## jocelyndale (Aug 28, 2006)

I always come back to Devin Starlanyl's survival manual.

And figuring out any other health issues is important. In my case, there's hypermobility, food allergies, and celiac disease, among some other things. I know that if I stay on top of my diet and PT (for the joint laxity), I'll be better able to cope with the fibro.

Little things matter. A good sleeping environment. Access to hot epsom salt baths. A partner who gives good foot rubs. Drinking enough water. It's all about balance.


----------



## Ruthla (Jun 2, 2004)




----------



## umami_mommy (May 2, 2004)

Quote:


Originally Posted by *sarahandlily* 
where did you get the best info on fibro? please send me website links, book titles, articles, ect.

what do you find works best to help YOU manage/cope day to day? and what does not? i know we are all so different when it comes to fibro on what helps and what doesn't, but i would like to know what works for you as i continue to do my own research.

i am 27 with 3 kiddos and getting worse and worse over the past 10 years. my mom has it too and i am already way worse that she is. i used to be an athlete so feeling weak and puny is a death sentence in and of itself. any info would be helpful. i get discouraged trying to weed through the crap and fads to find the good info. i have a 3 month old with severe colic, a 18 month old, and a 5 year old. trying to find time on the computer is all but impossible lately.

thanks so much!
sarah

dietary changes, supplements and acupuncture have done wonders for me. i am seeing a good naturopath. also yoga, meditation and massage.

about your 3 month old... is he/she allergic to something in your diet maybe? have you read dr. sears info on fussy/high needs babies? check out his website.

all the stuff i find online is either/or... either very medical or very hippy-dippy eat an all raw diet, get coffee enemas and you'll be fine. i go to my ND for good good info.


----------



## YummyYarnAddict (Sep 24, 2007)

I just came across this tribe last night though I haven't read all the pages yet... can I ask how you manage w/all the responsibilities of raising kids and work and managing a home and ... everything? I was officially diagnosed with fibromyalgia by a rheumatologist about 8 years ago after I ended up in the ER for chest pain and everything checked out in my labwork except for an off the chart CPK level -- it was in the 3000s and the high end of normal was 250. When I followed up w/my internist she told me to rest for a week and my level went even higher so she referred me to a rheumatologist who tested me for a bunch of things and based on my history I finally got my official dx of fibro (which I knew I had, but didn't tell her I knew) and she discovered my multinodular thyroid and a couple of other wonky things. I've since moved and don't have a doc to help with my fibro anymore and I now have two young children who I'm raising alone and right now I'm in the midst of a flare. I'm exhausted beyond belief because I'm in so much pain I can't sleep or is it that I'm in pain because I haven't been able to sleep because my sleep has always been terrible?

My entire body just hurts at this point where I can barely stand to be touched and where my clothes hurt even. I'm beyond exhausted ... I don't know how I'm getting through my days. It's so hard. And I have to work or we don't eat, you know? And my house... cleaning, cooking... I hurt so much the tears just flow and I can't stop them. But I have the kids, they're so little.

I have bad osteoarthritis and had a hip replacement when I was 25. I've been having problems with the prosthetic since my daughter was born, but have had problems finding someone to deal with that. I finally self-referred to an orthopod to look at that and found out I have osteoporosis in my pelvis in addition to having problems with the prosthetic so it needs to be revised. I'm in my 30s. That explains some of the pain at least. I'll just put that on my "to do" and "problem" list. Sigh...

I don't have any family and since we moved, I don't have any friends close by and my friends from where we moved think I'm just lazy. I look okay. Maybe a bit tired, but, hey, moms are tired, right? What's my problem? I'm young, fit... what gives? I ask for help and they make it seem like ... I don't know ... I feel like I'm living in this hole where no one understands and now I have to find new doctors who understand (I'm on my third internist!) and it's SO hard ... how are people managing?

I'm so sorry to whine and vent. I'm just having a hard time. I'm so tired and I hurt. And I'm not lazy. If I'm begging, it's because I'm trying to do the best I can for my kids because I don't want them to see me hurt and I know it scares them. I took my kids with me to see the orthopod and my dd got scared when he was saying that I need surgery and she's been asking who will take care of them and when he kept saying that I need to be careful with my joints etc. etc.

Hi, everyone.


----------



## supakitty (Mar 6, 2002)

YummyYarnAddict - With CPK levels that high were you tested or treated for polymyositis? Did a neurologist do an EMG?

-Laura


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *supakitty* 
YummyYarnAddict - With CPK levels that high were you tested or treated for polymyositis? Did a neurologist do an EMG?

-Laura

I've had several EMGs by orthopods over the years for several things but they've all been normal. I've never had one by a neurologist though I've seen several neurologists (all at once in the same clinic, they know about each other, so not doctor s/hopping) for seizures, migraines, sleep disorder (I have diagnosed alpha intrusions and out of synch sleep architecture contributing to my insomnia). I've never been tested for polymyositis. I've also never had a normal CPK. The closest I've had is in the 500s and it's been in the 6000s which they've said they've only seen in crush accident victims. So they know I hurt, but they can't seem to figure out why or what to do about it it seems.


----------



## Ruthla (Jun 2, 2004)

I wouldn't be managing if I had to work full time. I had my parents providing free rent when I was on the waiting list for SSI, plus I get Medicaid and Food Stamps. I also get child support payments from the girls' dad, but financially we're still struggling.

I first moved in with my parents during a major depressive episode- I'd been hospitalized and unable to work or care for my kids. The depression has resolved since getting my FMS diagnosis and no longer trying to do more than my body can handle. I no longer bite off more than I can chew and wonder what the F is wrong with me.

I still don't think I'd be able to make it without my parents' help. I'm paying a "much less than fair market value" rent to them, and they're willing to pay for things for the kids if I find that the money's too tight for me to cover something.


----------



## aimeellh (May 27, 2005)

Hi Mamas,

I wish I had more time to write, but I was actually here looking for something very pressing.

I've had FM for 15 years, have two babes, 1yr and 5yr and our lives have be completely rearranged by this when the pain finally landed me house/bed bound for 4 months. Shit. I never knew that could happen.

I just wanted to say that, by fire, I've found a few things that have truly truly improved my quality of life.

The Body Ecology Diet by Donna Gates
Nourishing Traditions by Sally Falon
Herbal Home Healthcare by Dr. Christopher
The Four Agreements by Don Miguel Ruiz
The Sorcerer's Crossing by Taisha Abelar
Writing Down the Bones by Natalie ?

Hope to write more soon.
I had no idea there was such a big group of Mamas out here connecting.
I gave up looking before I found Mothering forums.

All the best,

Aimee
http://theheartofaimee.blogspot.com


----------



## Blooming (Feb 16, 2006)

mamas how do you deal with the depression of having fibro? I'm trying not to let it creep in but after sitting on the same couch and staring at the same trees out the window. I'm needing support.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
mamas how do you deal with the depression of having fibro? I'm trying not to let it creep in but after sitting on the same couch and staring at the same trees out the window. I'm needing support.









I think it comes down to having realistic expectations, and going through a mourning period for the "life you can't have." I'm able to focus on my strengths and really appreciate my "high energy days" rather than having one "good" day and then be miserable because the next few days are harder for me.

It's more of a matter-of-fact thing now. Ok, it's a low energy day. There are things I can't do today, and I'm not even going to try to do them. I'll save my energy for the laundry so I don't feel overwhelmed by the house tomorrow.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *YummyYarnAddict* 
I'm exhausted beyond belief because I'm in so much pain I can't sleep or is it that I'm in pain because I haven't been able to sleep because my sleep has always been terrible?

Lack of sleep is always going to make it worse. How did you identify your sleep disorder, and what is your doc doing to help? Once I was drugged into sleep my migraines dropped off significantly. I hate taking the drugs, but I was completely useless and foggy after running on no sleep for so long.


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *bigeyes* 
Lack of sleep is always going to make it worse. How did you identify your sleep disorder, and what is your doc doing to help? Once I was drugged into sleep my migraines dropped off significantly. I hate taking the drugs, but I was completely useless and foggy after running on no sleep for so long.

I'm not sure which came first -- the sleep issues or the pain -- because I never slept through the night even as a child. I've had sleep studies done by two different neurologists who specialize in sleep. Once when I was in college and again several years later (the results were the same). I've been on anti-dpressants and various sleep meds with various results but no real satisfactory solution, but now that I have two small children (5yo and 1yo) that I'm solely responsible for, I don't take any meds because I don't want to risk any side effects that might compromise me.


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *Ruthla* 
I wouldn't be managing if I had to work full time. I had my parents providing free rent when I was on the waiting list for SSI, plus I get Medicaid and Food Stamps. I also get child support payments from the girls' dad, but financially we're still struggling.

I first moved in with my parents during a major depressive episode- I'd been hospitalized and unable to work or care for my kids. The depression has resolved since getting my FMS diagnosis and no longer trying to do more than my body can handle. I no longer bite off more than I can chew and wonder what the F is wrong with me.

I still don't think I'd be able to make it without my parents' help. I'm paying a "much less than fair market value" rent to them, and they're willing to pay for things for the kids if I find that the money's too tight for me to cover something.

I've been resisting applying for SSI for years and I think that's what I really need to do. I was off of work on long term disability for 5 mos in 2001 and changed careers instead of going back and I've been struggling since then because my health hasn't been the same and I just haven't been able to make the same $$. And, of course, 9/11 hit so the job market hasn't been the same even if I went back to the same field.

Unfortunately I don't have any family to help and I'm just not making it. Friends don't get it because I LOOK okay. And since I had my kids after my diagnosis (and being single) they don't get it. Money's so tight I'm scared and that's making the stress that much worse. And we moved to an area where housing costs are lower, but there's less diversity so my dd had some "issues" with being discriminated against because of our ethnicity and religion (mixed race and Jewish... oy!) in public K earlier in the school year and I had to pull her out to homeschool her (I work from home) which means I'm "on" with both kids 24/7 with no relief, no breaks, no help... and it's really hard.

Add in the record setting snowfall and constant shoveling it's just too much.

My neurologist did suggest back in September that I could apply for SSI because of my seizure disorder...

Thanks!


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *Blooming* 
mamas how do you deal with the depression of having fibro? I'm trying not to let it creep in but after sitting on the same couch and staring at the same trees out the window. I'm needing support.









s

It is a real challenge. For me the depression has come from different places over the years, but it's gotten easier as I've accepted my limitations for what they in spite of the fact that they are so frustrating (if that makes any sense). There's the depression and anger that comes from my body not working the way it's supposed to and letting me down. The depression and anger from feeling like I'm letting other people down. The depression and anger from my life not being the way it's supposed to be and not going according to plan. There's the depression and anger -- and this one is HUGE for me personally -- from other people not understanding and being out and out cruel sometimes when you ask for help. I'm in a bad flare and when I recently asked friends for help, I was told, "my concern is that I will do you more harm than good by helping you." That hurt me beyond belief not only for me but for my kids because it's hard for me to ask for help, but when it comes to my kids, heck, I put my pride aside and ask, and this is what I got back from so called "friends."

The depression is hard because it can sit there right smack dab in the middle. For me, the biggest help is giving myself permission to feel and own the depression AND anger and really wallow in it and explore it. Cry. Rage. Scream. Feel. Then figure out the source of it and where it's coming from so that I can mourn the losses that are so very real. My body doesn't work the way I want it to. My relationships with other people are not the way I want them to be. I can't do everything I want to do. My income potential has been affected. I do hurt all the time. My quality of life is not what I want it to be. It's okay to mourn the loss of those things and in order to move past the losses, you have to claim them and grieve them. The grief will always be there and the pain will always be there, but in order to put it into perspective and let it have less of a hold on you, you have to give yourself permission to claim it first.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *YummyYarnAddict* 







s

It is a real challenge. For me the depression has come from different places over the years, but it's gotten easier as I've accepted my limitations for what they in spite of the fact that they are so frustrating (if that makes any sense). There's the depression and anger that comes from my body not working the way it's supposed to and letting me down. The depression and anger from feeling like I'm letting other people down. The depression and anger from my life not being the way it's supposed to be and not going according to plan. There's the depression and anger -- and this one is HUGE for me personally -- from other people not understanding and being out and out cruel sometimes when you ask for help. I'm in a bad flare and when I recently asked friends for help, I was told, "my concern is that I will do you more harm than good by helping you." That hurt me beyond belief not only for me but for my kids because it's hard for me to ask for help, but when it comes to my kids, heck, I put my pride aside and ask, and this is what I got back from so called "friends."

The depression is hard because it can sit there right smack dab in the middle. For me, the biggest help is giving myself permission to feel and own the depression AND anger and really wallow in it and explore it. Cry. Rage. Scream. Feel. Then figure out the source of it and where it's coming from so that I can mourn the losses that are so very real. My body doesn't work the way I want it to. My relationships with other people are not the way I want them to be. I can't do everything I want to do. My income potential has been affected. I do hurt all the time. My quality of life is not what I want it to be. It's okay to mourn the loss of those things and in order to move past the losses, you have to claim them and grieve them. The grief will always be there and the pain will always be there, but in order to put it into perspective and let it have less of a hold on you, you have to give yourself permission to claim it first.











You hit the nail on the head. It hurts in so many ways in so many places.


----------



## Blooming (Feb 16, 2006)

I was wondering if we could all post the things we do to help keep our Fibro in check. I really need to find my way out of this flar. Perhaps we can all help each other out. Before this flare I:

-did yoga
-stopped eating gluten
-took a multi-vitamin
-napped in the middle of the day
-went to therapy once a week.

What do you do?


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *Blooming* 
I was wondering if we could all post the things we do to help keep our Fibro in check. I really need to find my way out of this flar. Perhaps we can all help each other out.

aqua aerobics, aqua NIA, warm water exercise
stretching daily
hot tub time or hot epsom salt baths
regular bedtime
good shoes
addressing other health issues that are more controllable (allergies, joint issues, mild headaches, etc)
hugging trees
hiking
going gluten-free (celiac disease--treating that made the CFIDS go into remission)
avoiding trigger foods (sodium benzoate leaves me in tons of pain)


----------



## Blooming (Feb 16, 2006)

: hugging trees, I like that. I think I will try that one today.


----------



## Ruthla (Jun 2, 2004)

You actually go outside and hug trees? I thought that was just an expression!

I think I'd be in more pain if I actually moved my arms wide enough to hug a tree while balancing myself near the tree without tripping over the roots.









I'm in a bit of pain today, but I'm mentally in better shape than I was the past couple of days. I'd been pushing myself past the "tired" point and then finding myself unable to fall asleep. So last night, instead of getting DS to bed and then trying to sleep (the past two nights I'd ended up awake until very late because I was just too stressed to sleep) I instead went to bed at 7:30.

I couldn't fall asleep right away, but I had some quiet time in my room and fell asleep around 8:30. Then I slept until 8:00 AM (well, I woke a few times but fell back to sleep) somewhat rested, and showered before the kids woke up.

My shoulders are REALLY sore today, I think it's from the rain. And the fact that I need to ration my pain meds isn't helping- I figure I'll take them on nights when I have to be busy the next day and don't have the option of a quiet day at home, and skip them on days I can afford to be in pain. Hopefully my rheumy will be in tomorrow and refill my meds, then I can get more on Wednesday (as the pharmacy NEVER keeps this in stock.) I'm seeing him a week from Tuesday.


----------



## Blooming (Feb 16, 2006)

Note to self: Hug small baby tree.

Ruthla-
I hope you feel better and get some more sleep.


----------



## Indigo73 (Aug 2, 2002)

Quote:


Originally Posted by *Ruthla* 
You actually go outside and hug trees? I thought that was just an expression!

Oh, I do. I love going into the back yard and "grounding" by hugging one of the big maples back there. Tends to give me a boost, even if it's just a moment of fresh air after being inside for days.

- Knitting Group
- Yoga (modified on days I am sore)
- Water Aerobics
- Dealing with other medical issues so I don't feel overwhelmed
- Cutting processed foods from diet
- Upping protien intake
- No standing for long periods of time. Walking whenever I can, even if it's pacing the kitchen.
- *Absolutely* do not deviate from sleep schedule. This one kicks me in the butt every time I get off track.


----------



## Ruthla (Jun 2, 2004)

I took a nap this afternoon and I'm feeling a wee bit better.

I need to *establish* a regular sleep schedule before I can avoid deviating from it.







For some reason, getting DS to bed has been incredibly stressful lately, and has left me unable to settle down to sleep. I need to break that bad cycle, and I don't think that leaving the girls to get him to bed every night is a good long-term solution.


----------



## Indigo73 (Aug 2, 2002)

My ds (who is also 6) and I have about the same schedule. While he usually goes out when his head hits the pillow, I read for 30 mins while my melatonin/magnesium kicks in. But we both head to bed at 8:00 and are up at 6:00 - 7:00.


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *Ruthla* 
You actually go outside and hug trees? I thought that was just an expression!

Actually, I do. I prefer mature trees. Little ones are too playful. They're all slowly starting to wake up where I live right now. It's a nice time.







: And it doesn't have to be a wide-armed hug. I often just lean on the tree or place both hands against the bark.

I also like finding nice rocks to stretch out on. I just rest and breathe slowly.

Some folks do qi gong, reiki, meditation, tai chi, or yoga. I hug trees. It all goes back to the same thing. It's all energy work.


----------



## Blooming (Feb 16, 2006)

I once read of a beautiful meditation where you sit and imagine that you are a tree. You picture your spine as the root of the tree growing and intertwining with the earth. It helps some people feel grounded and part of the life all around them.


----------



## umami_mommy (May 2, 2004)

Quote:


Originally Posted by *Ruthla* 
You actually go outside and hug trees? I thought that was just an expression!

tree hugging is very grounding.







:


----------



## YummyYarnAddict (Sep 24, 2007)

Oh my G-d, the pain's so bad. I feel like a great big raw nerve. The pain is burning. It's vibrating. I feel like I'm on fire. Everything hurts. I can't stand for anything to touch me. I can't stand to touch anything.

But my "friends" call me lazy. I have to take care of my babies. I'm so scared sometimes. It even hurts to type. The tears just roll down my face... I'm all alone in this: "my concern is that by helping you, I'd do you more harm than good."

I don't know what to do. The pain is so real. I cry myself to sleep. Well, if I could sleep. I do cry though. Everything just hurts. I feel devastated and guilty that it hurts to have my kids on my lap and that they might thing that if I let on that it hurts that they might get the idea that I'm rejecting them. I'm just so scared all the time and I don't know whoat to do.


----------



## umami_mommy (May 2, 2004)

YYA,









have you tried high doses of magnesium? (1000 to 1500 mg) my ND said that in cases of muscle pain and weakness, magnesium deficiency is the most common cause.

hydrotherapy works for me too... any spas around you you can go to for the afternoon?


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *honeybeedreams* 
YYA,









have you tried high doses of magnesium? (1000 to 1500 mg) my ND said that in cases of muscle pain and weakness, magnesium deficiency is the most common cause.

hydrotherapy works for me too... any spas around you you can go to for the afternoon?










Thank you for the hugs. I just stocked up on cal/mag supplements yesterday since I was diagnosed with osteoporosis last month







in spite of being in a low risk group (being under 40 and all, premenopausal, etc. etc.). I'm supposed to take a high dose of the calcium which would put me at about 1000mgs of the magnesium so maybe that will help?

Unfortunately I'm "on" with the kids 24/7 since I don't have any help so a spa is out of the question, but our tub does have jets and I have some bath salts from Israel. I have to work when the kids go to bed tonight (I worked until after 2 this morning too) so I don't know when I'll get to use them, but I'll try to squeeze it in sooner rather than later.

I'm just really at my wit's end here. Sigh...


----------



## Ruthla (Jun 2, 2004)

YYA

If not a spa, how about a hot epsom salts bath?

I'm feeling pretty crappy myself this weekend, but at least I was able to sleep last night and I'm feeling more tired than in pain. I wish I knew what caused this flare so I could prevent it from happening again. So either I got glutened accidentally, or I have a virus, or it's completely random and nothing I could have prevented. I just want to feel good.


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *Ruthla* 







YYA

If not a spa, how about a hot epsom salts bath?

I'm feeling pretty crappy myself this weekend, but at least I was able to sleep last night and I'm feeling more tired than in pain. I wish I knew what caused this flare so I could prevent it from happening again. So either I got glutened accidentally, or I have a virus, or it's completely random and nothing I could have prevented. I just want to feel good.

I can only get a bath when the kids are sleeping. Yoel will take a nap, but Mayim is almost 6 and has been uber clingy since my ortho appt last month when she heard the doc say that I need to have my hip replacement revised and to "think about what I'm going to do with the kids" so she barely lets me out of her sight. She still goes off to play with friends and such, but I have to be close by. Last time I tried to take a bath -- alone, that is -- she jumped in and our tub isn't that big! Last night when I was working, she curled up at my feet in her Hello Kitty blanket and had a fit every time I tried to send her to bed, so I just let her be and carried her to bed when I finished working in the wee hours (we all co-sleep). So that's my day, I get up early for Yoel to nurse and sometimes I can convince him to go back to sleep, but I have to get up and try to get some work done. Then I'm with the kids all day trying to get work in here and there as I can and homeschooling. Then I put the kids to sleep and I work more. If I were able to sleep as soon as my head hit the pillow until Yoel woke up, I could get 3-4 hours a night, but I'm not even getting that much. At this point I panic when I have to drive somewhere that's more than 10-15 minutes away because I usually have to find a parking lot or somewhere to rest and take a few deep breaths to get the pain under control because I literally have tears rolling down my face.








I hope you can get some rest this w/e. I hope it's not the gluten -- at least it takes a while for me to get it out of my system.


----------



## YummyYarnAddict (Sep 24, 2007)

Okay, I'm an idiot! BOTH kids took a nap today (when was the last time THAT happened?? my dd is almost 6) and I spent the time filling out my SSDI application online and cleaning the house. By the time the lightbulb went off -- DING! bath for mommy! -- lil guy woke up.


----------



## supakitty (Mar 6, 2002)

I find the most frustrating thing lately is that my legs and arms ache and feel numb when I sit down or lay down. I feel best standing up but I'm dead on my feet. I know part of this has to do with three bulging disks in my lower back but I wonder if part of it is fibromyalgia? Does anyone else experience this?

-Laura


----------



## spiderdust (Oct 3, 2005)

Ok... I need to know everything you mamas can tell me about fibromyalgia and pregnancy. Right now, I'm utterly miserable, can barely eat, and am either sleeping or sitting around exhausted.


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *spiderdust* 
Ok... I need to know everything you mamas can tell me about fibromyalgia and pregnancy. Right now, I'm utterly miserable, can barely eat, and am either sleeping or sitting around exhausted.

It's very different for each person, and even then from pregnancy to pregnancy. With my dd, I had hyperemesis, but other than that (which was bad enough) I was able to manage to work three part-time jobs. One as a personal trainer, one as a massage therapist, and one office job (with the benefits) up until two days before she was born and I actually felt better during that pregnancy that I did non-pregnant. I suffered a few pregnancy losses in between my kids and had varying degrees of difficulty for a variety of reasons, but with my ds, I was a veritable basketcase and could barely move much of the time. I had to force myself to get out of bed and take care of my dd and get to work and take care of things. The upside was that my sleep was better than ever because I could sleep whenever my body was still regardless of how much pain I was in because the fatigue trumped the exhaustion. I never gain much weight when pregnant and have to force feed myself which I can't really attribute to the fibro since I have hyperemesis. With my dd, I struggled to gain 11lbs and with my ds I gained 16.

The other thing to keep in mind though, is that pregnancy IS exhausting, so it can be hard to tell if it's the fibro or pregnancy unless you have an increase in pain and other accompanying symptoms. Also be sure to stay on top of your iron levels for anemia as that can be a factor.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *spiderdust* 
Ok... I need to know everything you mamas can tell me about fibromyalgia and pregnancy. Right now, I'm utterly miserable, can barely eat, and am either sleeping or sitting around exhausted.











I wasn't diagnosed with FMS until my youngest was about 2 years old, so I don't know too much about fibro and pg. I'm honestly not sure if I had FMS when I was pg or not- I do know that pg was exhausting for me, and when I was pg with my 2nd, my crawling baby needed less sleep than I did. But that could have just been from the pg, and post partum exhaustion could have just been post partum exhaustion. For me, FMS diagnosis was "aha! So that's what I've been feeling all this time!" rather than an obvious start of symptoms.

From what I've read, I know that some people experience releif of FMS symptoms while pg, others feel it worse, and others see no change at all. It can be really hard to distinguish FMS from normal pg symptoms, as exhaustion is normal while pg, as are random aches and pains.

I can see from your siggie that you're about 2 months pg (congrats!) but I'm not sure if you've been diagnosed with fibromyalgia or not. Either way, the best thing you can do is to take good care of yourself- with plenty of rest, only as much gentle exercise as you can tolerate, and lots of good nutrition.

Listen to your body and rest when you need it and try to get as much sleep as possible. Make sure you're taking a good multivitamin, and if you have any muscle pains, extra magnesium is extremely helpful and certainly safe for the baby. Extra calcium is good too, but you need more magnesium than calcium (actually, you need them in about the same amounts, but that comes to a higher percentage of the RDA for magnesium.)

If there are any foods you know you're allergic or sensitive to, avoid them. Any food you have "pregnancy related aversions" to should likewise be avoided. Just make sure you're getting lots of good nutrition from other sources. If you can't tolerate dairy then get lots of bone broths (unless you're a vegetarian.) Fish oil is a good supplement as well- for general good health for mama and baby, and for antidepressant qualities and reduction of inflamation and FMS related pain. Fish oils contain only trace amounts of mercury and other contaminants that are sometimes found in fish, as mercury is water soluble, not oil soluble, and fish oils are filtered before packaging.


----------



## umami_mommy (May 2, 2004)

Quote:


Originally Posted by *spiderdust* 
Ok... I need to know everything you mamas can tell me about fibromyalgia and pregnancy. Right now, I'm utterly miserable, can barely eat, and am either sleeping or sitting around exhausted.

it was vitally important for me to support my adrenals as much as possible when i was pregnant. the first time i was working and would get so tired i could barely breathe. the second time i paced myself better but was was still so tired by 3 PM. i would put something in the crockpot every morning, do something very early with DS and then just take it very easy in the afternoon.

supporting my adrenals made things much better for me. i was still tired, but less so.

also, i discovered that i was extremely hypoglycemic. have you checked your book sugar levels?


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *honeybeedreams* 
also, i discovered that i was extremely hypoglycemic. have you checked your book sugar levels?

(pssst, don't leave donuts in your books.)

Me, too! Once I started testing my blood sugar around 18 weeks and realized how low it was, I started eating more. And my nausea went away, the energy came back, and I felt pretty good (sure, there's still pain, but there's always pain).

I had to eat a lot more. It's hard to prep and eat when there's no energy and tons o'nausea. I figured out what would work for me--mango smoothies. Yogurt, protein powder, and frozen mango. I'd get one of those in me and then I could handle making something more substantial. Sometimes my husband would have to make it if I was too woozy. I did a lot of (GF) grilled cheese, too.


----------



## purple_kangaroo (Feb 20, 2006)

Hi all, I didn't read the whole thread yet . . . will come back and do that when I have more energy.

For about the last month I've been having the worst FMS/CFS flare-up I've had in years. It fluctuates from day to day, so some days are better than others. Today the pain and fatigue and discouragement are just really bad.

My joints are popping in and out, I can't lift my 2yo because my shoulders keep poppping out of joint and lifting anything is excruciating. Everything hurts . . . even my hair and teeth and skin hurt. I can't sleep because I'm in so much pain, and of course not getting enough sleep makes the pain worse. I have a chiropractor appointment tomorrow and am going to try to get an appointment with my very FMS-knowledgeable naturopath (who has helped me a lot in the past) ASAP.

But can anyone give me pointers for getting through the next few days, and just managing? I have 3 young children and am just having a hard time coping right now.


----------



## purple_kangaroo (Feb 20, 2006)

Heh. I just took a hot bath with epsom salts, thinking that would help. I kept putting in more hot water because I felt cold even in a hot bath, until it finally didn't feel cold any more. It was quite hot, I think. It felt good for a while. Then I got dizzy and my knees started hurting more, so I got out. Now my joints (esp. knees and elbows) are all puffy and inflamed from the heat.


----------



## EStreetMama (Sep 5, 2003)

Yes, I'm having a hard time with pain lately too. And sleep. I do feel discouraged.

I was happy to see this thread tonight! I hope to "meet" all of you!

--Adrienne


----------



## supakitty (Mar 6, 2002)

Has anyone heard of taking DLPA? http://www.doctoryourself.com/pain.html There seems to be tons of information about it online.

-Laura


----------



## umami_mommy (May 2, 2004)

Quote:


Originally Posted by *purple_kangaroo* 
Heh. I just took a hot bath with epsom salts, thinking that would help. I kept putting in more hot water because I felt cold even in a hot bath, until it finally didn't feel cold any more. It was quite hot, I think. It felt good for a while. Then I got dizzy and my knees started hurting more, so I got out. Now my joints (esp. knees and elbows) are all puffy and inflamed from the heat.


it was probably too hot!

use a bath thermometer next time so it's not above like 110* or 105*


----------



## Ruthla (Jun 2, 2004)

Anybody here take Lyrica?

I saw my rheumatologist today, and he suggested I start taking it. He gave me the prescription last time but I was afraid to try it because of the potential weight gain.

This morning I was feeling "OK"- a little tired but not too achey. Starting about 15 minutes after that Lyrica pill, I got dizzy and a headache and I'm in more pain now, probably from fatigue.

I guess I'm only going to take this at night, if I take it at all. But now I'm not sure about dosing, as I'm supposed to take this twice a day. Do I take two pills at night instead of one pill twice a day?


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Ruthla* 
Anybody here take Lyrica?

I saw my rheumatologist today, and he suggested I start taking it. He gave me the prescription last time but I was afraid to try it because of the potential weight gain.

This morning I was feeling "OK"- a little tired but not too achey. Starting about 15 minutes after that Lyrica pill, I got dizzy and a headache and I'm in more pain now, probably from fatigue.

I guess I'm only going to take this at night, if I take it at all. But now I'm not sure about dosing, as I'm supposed to take this twice a day. Do I take two pills at night instead of one pill twice a day?

Dunno, maybe your body doesn't like Lyrica.
http://www.rxlist.com/cgi/generic/lyrica_ad.htm
http://www.askapatient.com/viewratin...23&name=LYRICA

When I worked with people with handicaps, we had one client who was known for being a compulsive liar, and when she claimed Klonipin gave her a headache everyone assumed she was lying and they reported she was 'noncompliant' with her meds. Years later a doctor gave it to me and it gave me headaches, and I had discovered the internet, so I researched it to find that headaches were a side effect reported by patients taking the drug.







:


----------



## Ruthla (Jun 2, 2004)

OK, I just got off the phone with my dr. He said I should just stop taking it, and seemed surprised that I do well on Ultram, which is more likely to cause dizziness than Lyrica is.

Damnit! I forgot to ask him how long it takes for this drug to get out of my system.


----------



## supakitty (Mar 6, 2002)

I thought Ultram worked really well but it kept giving me this sensation like I was about to have a seizure, very weird and hard to describe.


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *purple_kangaroo* 
Heh. I just took a hot bath with epsom salts, thinking that would help. I kept putting in more hot water because I felt cold even in a hot bath, until it finally didn't feel cold any more. It was quite hot, I think. It felt good for a while. Then I got dizzy and my knees started hurting more, so I got out. Now my joints (esp. knees and elbows) are all puffy and inflamed from the heat.

The dizziness was probably low blood pressure. I make sure I have plenty of cool water to drink. And if the tub is really hot, I ask for help getting out, then run some cool water over my wrists at the sink.


----------



## Blooming (Feb 16, 2006)

Hey mamas. Man, it seems like everyone is having such a hard time. Hugs to you all.

I'm still in a lot of pain. I'm begining to think something else is going on in addition to the stuff I already know about.

Have any of you had pronlems with the bones beneath your breasts? About a month ago I began having pains enough that I would wake up in my sleep. Now it is starting to be all day and even when I breath. Should I have this cheeked out or does this sound familiar to some of you? Keep in mind I do not have large breasts in the least so it is not that. It is the bones. And the middle of my chest. I also do not have a cold or anything.

I hope you all feel better, I'm sorry the lyrica didn't work for you Ruthla.


----------



## Ruthla (Jun 2, 2004)

I'm feeling a lot better today, but still slightly "hung over". I'm planning to drive to the library and the closest supermarket, less than about 5 minutes driving time round trip, but no other driving today. Yesterday I wouldn't have been safe behind the wheel of a car at all (which sucked when dinnertme came around and the girls wanted to make pizza and we didn't have enough rice flour to make dough).

I missed my class this morning- I just wasn't ready to get up and dressed and out the door by 8:15 AM. I got DS dressed, sent him downstairs so Mom could give him breakfast (our usual morning routine) and then went back to bed instead of doing housework and getting myself ready.

Part of the reason I'm sore today is that I didn't take my usual Ultram last night- I wanted to get the Lyrica out of my system as fast as possible and not mix it with other drugs with unknown effects. I still have this headache though- I may take some asprin and tylenol later- not great for my liver but they won't affect my state of mind.


----------



## EStreetMama (Sep 5, 2003)

Quote:


Originally Posted by *Blooming* 
Hey mamas. Man, it seems like everyone is having such a hard time. Hugs to you all.

I'm still in a lot of pain. I'm begining to think something else is going on in addition to the stuff I already know about.

Have any of you had pronlems with the bones beneath your breasts? About a month ago I began having pains enough that I would wake up in my sleep. Now it is starting to be all day and even when I breath. Should I have this cheeked out or does this sound familiar to some of you? Keep in mind I do not have large breasts in the least so it is not that. It is the bones. And the middle of my chest. I also do not have a cold or anything.

I hope you all feel better, I'm sorry the lyrica didn't work for you Ruthla.

I would personally have this situation checked out.

Haven't had this before.


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *Blooming* 
Have any of you had pronlems with the bones beneath your breasts? About a month ago I began having pains enough that I would wake up in my sleep. Now it is starting to be all day and even when I breath. Should I have this cheeked out or does this sound familiar to some of you? Keep in mind I do not have large breasts in the least so it is not that. It is the bones. And the middle of my chest. I also do not have a cold or anything.

New chest pain should always be checked out, not just blamed on fibro.

Is the pain between the ribs and around the sternum? I have recurrent/chronic costochondritis, which is inflammation of the rib cartilage/connective tissue.

When it flares badly, I take an NSAID and rest as much as possible. You may need to wear nonbinding clothing (braless is too much for me, I wear an un-bra to reduce the movement) and try ice or heat. I have to ease up on lifting, too, and rest. In the past, I've been prescribed corticosteroids.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
Have any of you had pronlems with the bones beneath your breasts? About a month ago I began having pains enough that I would wake up in my sleep. Now it is starting to be all day and even when I breath. Should I have this cheeked out or does this sound familiar to some of you? Keep in mind I do not have large breasts in the least so it is not that. It is the bones. And the middle of my chest. I also do not have a cold or anything.

Nope, that never happened to me- any chest pain I've had hasn't lasted more than a couple of hours and could be traced to back pain/needing the chiropractor.

Quote:

I hope you all feel better, I'm sorry the lyrica didn't work for you Ruthla.
Thanks. I'm feeling better today, but I'm definitely not feeling 100%. Not that I'm ever 100%, but I'm still not feeling as good as I was feeling yesterday morning and the day before.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *jocelyndale* 
New chest pain should always be checked out, not just blamed on fibro.

Is the pain between the ribs and around the sternum? I have recurrent/chronic costochondritis, which is inflammation of the rib cartilage/connective tissue.

When it flares badly, I take an NSAID and rest as much as possible. You may need to wear nonbinding clothing (braless is too much for me, I wear an un-bra to reduce the movement) and try ice or heat. I have to ease up on lifting, too, and rest. In the past, I've been prescribed corticosteroids.

The pain is in the flat bone between my breasts and goes about 5 and a half inches down by my ribs.

Today I tried to get outside today but could not breath easily in the cold air.

My chest is also tender a little further up. I saw my acupunctrist yesterday and he said there was something going on in that area.

Even as I type it burns.


----------



## Ruthla (Jun 2, 2004)

What was the acupuncturists' advice? Did he treat the area acupuncturally, and you need to give it time to settle in, or does he think that it should be checked out medically?


----------



## Blooming (Feb 16, 2006)

He said he thought he felt whatever it was shift a bit but that we also should also do more work on it. He also said he thought it was my heart. (we weren't actually doing work on that area, we were more just tyring to bring more balance to my body as I've had so much going on lately)

I'm in so much pain right now. I can barley breath and am a little bit dizzy.

I just keep trying to take breaths. I have a heating pad on my chest.

I hope I get a nice break from all of this soon.


----------



## krankedyann (May 28, 2005)

:subbing

I just found this thread. I'm greatly recovered, as it appears that my FMS was actually from celiac disease and food allergies, but I still have bad days here and there. I'd love to join in and find out what helps others.


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *Blooming* 
I'm in so much pain right now. I can barley breath and am a little bit dizzy.

I just keep trying to take breaths. I have a heating pad on my chest.

I hope I get a nice break from all of this soon.

Dizziness and trouble breathing usually mean you should visit a healthcare provider.

I hope you find some answers. :/


----------



## purple_kangaroo (Feb 20, 2006)

Blooming, how are you today? Did you end up going to a doctor to get checked out? I hope so.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *purple_kangaroo* 
Blooming, how are you today? Did you end up going to a doctor to get checked out? I hope so.

I was at the doctor today. They ran some blood work because in addition to the chest thing I have lost 12lbs in a very short time. I'll get the results later today. They are testing my thyroid and some other things to see if I am dehyerated. I'm off to put a list of foods I think I can eat for my husband. I'm trying not to stress about the weight thing but I'm already down to 103. If I can't correct this I'll be down to 95lbs this time next week. But I'm trying not to think that way. I will put this weight back on.

They tested my oxegen and lstened to my chest, they said I sound fine so are going with it being Fibro pain for now. I am still sore and keep putting heat on my chest. It is also below zero today so I'll probably stay in till it warms up a bit.

On a good note, my nurse was so wonderful (I've been going through a lot lately) she came in and held my hand while I just cried. Her compassion was so beautiful.

Thank you so much for asking.









I hope you are all well.


----------



## EStreetMama (Sep 5, 2003)

Quote:


Originally Posted by *Blooming* 
I was at the doctor today. They ran some blood work because in addition to the chest thing I have lost 12lbs in a very short time. I'll get the results later today. They are testing my thyroid and some other things to see if I am dehyerated. I'm off to put a list of foods I think I can eat for my husband. I'm trying not to stress about the weight thing but I'm already down to 103. If I can't correct this I'll be down to 95lbs this time next week. But I'm trying not to think that way. I will put this weight back on.

They tested my oxegen and lstened to my chest, they said I sound fine so are going with it being Fibro pain for now. I am still sore and keep putting heat on my chest. It is also below zero today so I'll probably stay in till it warms up a bit.

On a good note, my nurse was so wonderful (I've been going through a lot lately) she came in and held my hand while I just cried. Her compassion was so beautiful.

Thank you so much for asking.









I hope you are all well.

Wow...I hope you get some answers from the blood work. The weight loss makes sense if it's hyperthyroid.

I hope you're feeling better. Try a smoothie with coconut milk, if that sounds good and you're ok with digesting high fat. It's yummy and lots of good nourishment.


----------



## Ruthla (Jun 2, 2004)

I hope the weight loss was mostly water- because then it will be easy to put back on and isn't likely to continue.


----------



## supakitty (Mar 6, 2002)

I hope you hear something soon - I'm thinking of you too!


----------



## spiderdust (Oct 3, 2005)

I'm trying to figure out how to both properly take care of myself and take it easy on myself during this pregnancy (well, actually that's always a tricky balance for me, but especially right now). I'd love to prep food ahead of time, but what little brain and energy reserves I had pre-pregnancy are now sapped away. When I come home from school, I just want to *sleep*.

I'm really thinking of doing something like Dream Dinners to make things a little easier. I've got plenty of food in the pantry, but no brain power to inventory, plan menus, etc.


----------



## Ruthla (Jun 2, 2004)

Spiderdust- I'd suggest using a crock pot for lots of cooking. You can assemble ingredients in the morning when you have a bit of energy, then come home to a hot meal ready to go. Soups and stews are nourishing, easy on the stomach, and rather simple to prepare (its' just that they take a long time to cook.)

I'd go with frozen veggies instead of fresh right now- it's much less energy to open a bag than it is to start washing and chopping, and nutritionally there's little difference.

And don't forget that if you're able to inventory what you have, you can post over on the Meal Planning board and let others on MDC do some of the thinking for you.


----------



## blissful_maia (Feb 17, 2005)

Quote:


Originally Posted by *Ruthla* 
Spiderdust- I'd suggest using a crock pot for lots of cooking. You can assemble ingredients in the morning when you have a bit of energy, then come home to a hot meal ready to go. Soups and stews are nourishing, easy on the stomach, and rather simple to prepare (its' just that they take a long time to cook.)

I'd go with frozen veggies instead of fresh right now- it's much less energy to open a bag than it is to start washing and chopping, and nutritionally there's little difference.

And don't forget that if you're able to inventory what you have, you can post over on the Meal Planning board and let others on MDC do some of the thinking for you.

Great suggestions, Ruthla. I find thinking about cooking and feeding my family so overwhelming some days... and I'm not even pregnant and exhausted!


----------



## spiderdust (Oct 3, 2005)

Quote:


Originally Posted by *Ruthla* 
I'd suggest using a crock pot for lots of cooking. You can assemble ingredients in the morning when you have a bit of energy, then come home to a hot meal ready to go. Soups and stews are nourishing, easy on the stomach, and rather simple to prepare (its' just that they take a long time to cook.)

This sounds like a great idea... except that I have to get up crazy early in the mornings already and would have to prep stuff beforehand. Maybe I can get a friend to help me on the weekends.


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *spiderdust* 
This sounds like a great idea... except that I have to get up crazy early in the mornings already and would have to prep stuff beforehand. Maybe I can get a friend to help me on the weekends.

Crockpot cooking can be uber easy and doesn't have to take a lot of prep. There are days when I toss in a whole chicken, open up a can of pineapples and toss than in and then toss in a jar of pasta sauce and you have a sweet and sour type of chicken going on. You can also do it with cut up chicken and I do use it while it's frozen. The kids love it. You can do your main dish like that with nominal prep -- frozen proten -- and then prep the sides later. I also use the small fingerling potatoes and baby carrots and other veggies that I can use whole (i.e., no prep aside from washing) and then there are veggies like beets and broccoli that require minimum prep that don't require peeling as they only have to be cut in half or very few times.

I think there's a crock pot cooking tribe on here somewhere.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *spiderdust* 
This sounds like a great idea... except that I have to get up crazy early in the mornings already and would have to prep stuff beforehand. Maybe I can get a friend to help me on the weekends.

Could you assemble stuff the night before and put it in a baggie in the fridge, then in the mornings dump the contents into the crock pot, add water, and turn it on?


----------



## Indigo73 (Aug 2, 2002)

Quote:


Originally Posted by *spiderdust* 
Maybe I can get a friend to help me on the weekends.

Actually, that is sorta what my friends and I do.

3 - 8 of us get together, usually my house because I have a huge farmhouse sized table, and we pre-cook/pre-package a bunch of meals together.

Sometimes one person shops for everyone. Sometimes we all bring what is needed for a meal each. Sometimes we have a theme - Mexican, baked, crockpot friendly, Vegetarian, Farmer's Market, Soup. Sometimes we get together weekly and sometimes it's months apart. But is always fun. Always informal and I get my kitchen & dining room scrubbed by the able-bodies and left over wine as payment.









It's cool because it's SAHMs, WAHMs, WOHMs, Single women. Everyone brings home a few different meals that they can reheat/cook.


----------



## Blooming (Feb 16, 2006)

Hi everyone. I was wondering if any of you are taking tramadol? If you have or are do mind sharing your expereince with me?

I seem to be the worst in the afternoon so I've been taking 2 in the afternoons. It seems to make me sleepy as it wears off but that is about it.


----------



## CorasMama (May 10, 2002)

Blooming: I use tramadol for breakthrough pain. Those drowsy side effects go away after you've used it for a little while. And I really like it. It has far fewer wonky-feeling side effects than narcotics. However, it gives me a headache, so I usually take it with 500-1000mg of tylenol.


----------



## Blooming (Feb 16, 2006)

Thanks Cora'smom. I've been taking 2 every afternoon since this flare started. I feel bad for taking them so much but it is the only way I can get through and even then some days like today it doesn't cut it.

What is breakthrough pain?


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Indigo73* 
Actually, that is sorta what my friends and I do.

3 - 8 of us get together, usually my house because I have a huge farmhouse sized table, and we pre-cook/pre-package a bunch of meals together.

Sometimes one person shops for everyone. Sometimes we all bring what is needed for a meal each. Sometimes we have a theme - Mexican, baked, crockpot friendly, Vegetarian, Farmer's Market, Soup. Sometimes we get together weekly and sometimes it's months apart. But is always fun. Always informal and I get my kitchen & dining room scrubbed by the able-bodies and left over wine as payment. 









It's cool because it's SAHMs, WAHMs, WOHMs, Single women. Everyone brings home a few different meals that they can reheat/cook.

This sounds so wonderful, not only a chance to get meals done but time with friends!


----------



## EStreetMama (Sep 5, 2003)

Quote:


Originally Posted by *Blooming* 
Thanks Cora'smom. I've been taking 2 every afternoon since this flare started. I feel bad for taking them so much but it is the only way I can get through and even then some days like today it doesn't cut it.

What is breakthrough pain?

"Breakthrough" is a symptom that recurs or persists despite treatment.

Like breakthrough reflux is having heartburn while taking medication for it.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *EStreetMama* 
"Breakthrough" is a symptom that recurs or persists despite treatment.

Like breakthrough reflux is having heartburn while taking medication for it.

Thanks mama!


----------



## mum4boys (Aug 10, 2005)

I just found this tribe. I was diagnosed with Fibro about 6 years ago. The beginning life was rough. Life is not too bad now. I actually feel a lot better since I went gluten free (I breast feed and my daughter has celiac's). I have TMJ and my doctor sent me to a sleep dr. Anyway I just found out that after doing the sleep study that I am having alpha intrusions, 44 times an hour which ironically enough I now find out is linked to Fibro. Anyone else out there with this problem and what do you do for it? I never feel like I get any sleep whatsoever. So mostly I stay awake.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *mum4boys* 
I just found this tribe. I was diagnosed with Fibro about 6 years ago. The beginning life was rough. Life is not too bad now. I actually feel a lot better since I went gluten free (I breast feed and my daughter has celiac's). I have TMJ and my doctor sent me to a sleep dr. Anyway I just found out that after doing the sleep study that I am having alpha intrusions, 44 times an hour which ironically enough I now find out is linked to Fibro. Anyone else out there with this problem and what do you do for it? I never feel like I get any sleep whatsoever. So mostly I stay awake.

I had a sleep study and all they told me was that I wasn't getting any REM sleep. So they drug me now to get there. It would be nice if they could at least give me a name for this. I read that there were a whole bunch of identifiable sleep disorders, but the only ones you ever hear anything about are insomnia, sleepwalking, night terrors and narcolepsy. What about the others?







:

There just isn't anything they can give me that doesn't have lousy side effects.


----------



## EStreetMama (Sep 5, 2003)

Quote:


Originally Posted by *bigeyes* 
I had a sleep study and all they told me was that I wasn't getting any REM sleep. So they drug me now to get there. It would be nice if they could at least give me a name for this. I read that there were a whole bunch of identifiable sleep disorders, but the only ones you ever hear anything about are insomnia, sleepwalking, night terrors and narcolepsy. What about the others?







:

There just isn't anything they can give me that doesn't have lousy side effects.

I have the same problem, although I do have periodic limb movement disorder which contributes to the lack of REM time.

You might want to have your pituitary (sp?) checked. I did a clinical study to research a fibromyalgia treatment and during the work up we discovered that I do not produce any measurable human growth hormone after exercise or sleep (the two times that your body produces it). They think the lack of growth hormone causes the pain because tissue can't heal itself after each day. My pituitary function studies didn't show any abnormalities, so ultimately this information was fruitless, but maybe it can help someone else. I take a ton of meds to sleep at night but I still don't feel like I get much restorative value out of my sleep


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *mum4boys* 
I just found this tribe. I was diagnosed with Fibro about 6 years ago. The beginning life was rough. Life is not too bad now. I actually feel a lot better since I went gluten free (I breast feed and my daughter has celiac's). I have TMJ and my doctor sent me to a sleep dr. Anyway I just found out that after doing the sleep study that I am having alpha intrusions, 44 times an hour which ironically enough I now find out is linked to Fibro. Anyone else out there with this problem and what do you do for it? I never feel like I get any sleep whatsoever. So mostly I stay awake.

I believe I've had fibromyalgia since I was very young as I recall complaining about being in pain when I was as young as 3yo and others recall this as well. Another thing is that I've never slept through the night and since I come from a family of sleepers -- like 10+ hour a night, early to bed late to rise type sleepers -- that is notable. I had sleep studies in college and afterwards and they've shown alpha intrusions, disrupted sleep architecture and insufficient REM. It wasn't until years later that I was officially diagnosed with fibromyalgia.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *EStreetMama* 
I have the same problem, although I do have periodic limb movement disorder which contributes to the lack of REM time.

You might want to have your pituitary (sp?) checked. I did a clinical study to research a fibromyalgia treatment and during the work up we discovered that I do not produce any measurable human growth hormone after exercise or sleep (the two times that your body produces it). They think the lack of growth hormone causes the pain because tissue can't heal itself after each day. My pituitary function studies didn't show any abnormalities, so ultimately this information was fruitless, but maybe it can help someone else. I take a ton of meds to sleep at night but I still don't feel like I get much restorative value out of my sleep









I'm fairly certain my pituitary is shot after the massive blood loss during childbirth. It's one of the many causes of hypo that I can relate to, along with too much soy in the past, vaccines, and fluoridated medications.








And since some people relate hypo to fibro, I think mine is definitely related.

How do you go about getting a doc to test that? And isn't it hard to get growth hormone?


----------



## EStreetMama (Sep 5, 2003)

Quote:


Originally Posted by *bigeyes* 
I'm fairly certain my pituitary is shot after the massive blood loss during childbirth. It's one of the many causes of hypo that I can relate to, along with too much soy in the past, vaccines, and fluoridated medications.








And since some people relate hypo to fibro, I think mine is definitely related.

How do you go about getting a doc to test that? And isn't it hard to get growth hormone?

It's impossible to get growth hormone unless you have a few rare medical conditions or you can pay cash. It can be more than $1000 per month.

There is a screening blood test plus imaging. I couldn't get the imaging unless something showed up on the screening test, which it did not. Hmmm...I have to think about the name of the test...gah, can't remember at the moment. Will post when I think of it or maybe someone else knows. My doctor looked at the info from the clinical study and agreed to the blood test, but wasn't willing to go to bat with the insurance for anything past that. ND also tested prolactin, but it was normal too.

I always see sleep problems listed as one of the fibro symptoms, but I really think (for me) that it's the other was around. Pain is a symptom of a lack of restorative sleep.

Sleep is the bane of my existence. It has been an issue since I was young, but it really became a disaster in my early 30's (I'm almost 43 now). My life and career and parenting and EVERYTHING revolve around my sleep challenges. I don't want to overdramatize, but it really is a hidden disability. And unless people have extreme sleep problems themselves, people can't really "get" how much it can mess you up.


----------



## bigeyes (Apr 5, 2007)

That was exactly my problem. I was driving professionally and started nodding off behind the wheel, in addition to having almost daily migraines and being so brain fogged and short tempered I couldn't function. It's debilitating.

I'm still not happy with my treatment, but I don't know what else to do about it.


----------



## EStreetMama (Sep 5, 2003)

Quote:


Originally Posted by *bigeyes* 
That was exactly my problem. I was driving professionally and started nodding off behind the wheel, in addition to having almost daily migraines and being so brain fogged and short tempered I couldn't function. It's debilitating.

I'm still not happy with my treatment, but I don't know what else to do about it.

Did the sleep study docs identify limb movement (usually legs)? That's why they put electrodes on your legs and feet during the study. This is what I have. Your legs twitch just enough to pull you out of REM but not totally wake you up. I do have one medicine that has been more effective for that to recommend, but it makes you seriously drowsy.

For all they know about the human body, answers for sleep problems are few and far between...it's very sad.


----------



## bigeyes (Apr 5, 2007)

This is an interesting change in my sleep pattern as well. For most of my life I was a very active sleeper, I would even sometimes wake up with my head at the foot of the bed! Now, my dh tells me I don't move _at all._ He works all kinds of crazy hours, and he says no matter what time he goes to bed or gets up, I have never moved from one time to the next. I've never noticed any symptoms of restless leg syndrome, either.


----------



## mum4boys (Aug 10, 2005)

I was diagnosed with fibro after being electrocuted. It was then that I started having problems with sleep. I took ambien but I hated it. Over the past few months sleep has been a huge problem for me. It really does not matter if I sleep or not I feel the same. When I got 48 hours without any though I get paranoid literally. It irks me dh goes to bed he sleeps 8 hours he never wakes up he wakes up refreshed. He has no concept. But the dr. did talk to him about respecting my sleep and why it was important. He said he really did not understand before when I told him if I am sleep do not wake me unless the house is on fire. Everything else can wait.


----------



## bigeyes (Apr 5, 2007)

Yeah, my dh gives me the _8 hours is enough_ line. If it was, I would wake up refreshed _wouldn't I?







:_


----------



## EStreetMama (Sep 5, 2003)

Quote:


Originally Posted by *mum4boys* 
I was diagnosed with fibro after being electrocuted. It was then that I started having problems with sleep. I took ambien but I hated it. Over the past few months sleep has been a huge problem for me. It really does not matter if I sleep or not I feel the same. When I got 48 hours without any though I get paranoid literally. It irks me dh goes to bed he sleeps 8 hours he never wakes up he wakes up refreshed. He has no concept. But the dr. did talk to him about respecting my sleep and why it was important. He said he really did not understand before when I told him if I am sleep do not wake me unless the house is on fire. Everything else can wait.

Ummmmmm...you were electrocuted? I'm so sorry! Do you mind telling about it? I'm new to this forum so maybe others know the story, but I would love to hear if you don't mind









My dh is also irked with my sleep. He is really bummed out when I take the opportunity to sleep in on weekends. It sounds like a luxury...but it's not _extra_ sleep...it's just trying to catch up on the deficit from the week of early mornings. Just another example that you can't really understand this problem unless you have it









Speaking of which...I should head to bed. Hopefully everyone gets some REM tonight


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *mum4boys* 
I just found this tribe. I was diagnosed with Fibro about 6 years ago. The beginning life was rough. Life is not too bad now. I actually feel a lot better since I went gluten free (I breast feed and my daughter has celiac's). I have TMJ and my doctor sent me to a sleep dr. Anyway I just found out that after doing the sleep study that I am having alpha intrusions, 44 times an hour which ironically enough I now find out is linked to Fibro. Anyone else out there with this problem and what do you do for it? I never feel like I get any sleep whatsoever. So mostly I stay awake.

Welcome to the tribe! I've definitely been doing better off gluten as well, though I haven't had any tests for Celiac.

What's an alpha intrusion? I've never heard that term before.

I've never been able to function on less than 9-10 hours of sleep a night- yeah, I've had the occasional day where I got less, but then I'd be dragging the next day and need to catch up on lost sleep within a few days or I'd get sick (and then, of course, I'd sleep more while sick.)

Lately I've been sleeping well by taking 100 mg of 5-HTP at bedtime, and sometimes extra melatonin to help me fall asleep if I'm having an extra hard time that day, or if things got busy with the kids and I missed my window after taking the 5-HTP.

Does anybody else have "windows to fall asleep" like I do? I'm sleepy, but if I push myself to stay awake past that point then I can't fall asleep later. And if I do have the chance to doze off and then I'm woken up? Oh, boy, if that happens a few times in a row I can be up for HOURS before being able to fall back to sleep! This was a huge problem when DS and I went to bed at the same time and shared a bedroom- he'd be his normal 4/5yo self and talk a lot at bedtime because he wasn't QUITE ready to sleep, with the end result that he'd keep me awake when I was ready to sleep (or I'd stay up in another room until he fell asleep and then miss my window for sleeping) and I was just plain miserable. It worked a lot better when DD2 and DS switched rooms, so now I share with DD2 and DD1 shares with DS. I often go to bed earlier than she does, but even if we go to bed at the same time, she's capable of being quiet when I need to sleep! And if she's not tired, she'll simply leave the room and let me keep sleeping.

Now we just have to teach the hamster not to be so noisy in his cage at night.







Actually, the only problem was when the wheel was bumping against the water bottle- he HAS woken me a few times but moving the wheel farther from the water bottle seems to have fixed that problem. He didnt' wake me at all last night.


----------



## Blooming (Feb 16, 2006)

Yup, I also have windows. I'm always sorry when I ignore my body and miss them. Then I never know when sleep will come again.


----------



## Blooming (Feb 16, 2006)

Has anyone felt confused and disorientated about life due to Fibro or is this more due to a depression I am trying to come out of?


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
Has anyone felt confused and disorientated about life due to Fibro or is this more due to a depression I am trying to come out of?

Fibro and depression are all very interrelated. Part of it is "brain fog" caused by the fibro itself, and then depression can sneak in because it's so depressing to deal with these physical limitations, especially when other people expect so much more from you than you're capable of.

Ever since I got approved for SSI, I've been much less depressed. My parents "get it" that I really do have a chronic condition and I'm not just "being lazy" when I can't do something they'd like me to do. Now it's "OK, Dad is 70 years old and has a heart condition, Mom has arthritis, Ruth has Fibro, so none of them can move furniture, so let's figure out who we can get to do the heavy lifting." Before they'd counted me in the list of "able bodied adults" and were constantly frustrated and mad at me when I couln't follow through.

Part of it is definitely physical- I felt so depressed when I was reacting to that dairy binge I had over a week ago! But part of it is situational, and my depression has lifted a LOT once I started respecting my limits and pacing myself.


----------



## mum4boys (Aug 10, 2005)

Quote:


Originally Posted by *EStreetMama* 
Ummmmmm...you were electrocuted? I'm so sorry! Do you mind telling about it? I'm new to this forum so maybe others know the story, but I would love to hear if you don't mind










We had just moved to a new to us house that had recently been remodelled. The kitchen door was right next to the stove. When they framed the kitchen door they screwed and nailed into the stove conduit. There was also a broken light fixture above the door and no ground wire to the house so there was always electricity flowing when the power was shut off (we hired engineers to figure out what happen that is how I know this but it was after the fact). Anyway I had taken a shower came out bare footed and hair soaking wet when I noticed a child of mine had made hot chocolate on the stove and had splashed on the door. I took a wet rag to wipe it up and when I touched the door knob, I completed the circuit and got fried with 220. It did not hurt while I was being electrocuted. Just a warm feeling tingling through my body. I was thrown off after what seemed like a year. We had tile floor with cement underneath. I hit my head and we are pretty sure I passed out. When I came too I literally thought great, I did not die on the door I am now going to die because my heart is not beating. A few seconds later my heart started to beat and it was the very worst pain I have ever experienced in my life. My 2nd child who was 8 or 9 at the time was screaming call 911. All I can think was if we call 911 they will take me away and leave my kids in a house that will kill them and I will return from the hospital and find my kids dead. In my defense remember my brain had just been fried so I was not thinking. So my husband rushed homed. He has problems in emergencies. I was obviously hurt so we did 25 mp on the freeway. I did not know at the time that your kidneys start to shut down because of the muscles being fried and them trying to keep up with the waste. So I damaged my kidneys, damaged my heart, I could not walk for about 2 weeks. My muscles had problems completing the circuit and I would take a step and fall. I was in braces on my legs and arms for a couple of months. I also fried my brain and lost part of my memories. I could not recall things from 2 months before up until that day. I found out after testing I had excellent memory. The best they had ever tested before but the concentration area in my brain had been damaged. So basically I was not remembering because I was not paying attention. I was in physical therapy for a couple of years. So that is it in a nut shell.


----------



## mum4boys (Aug 10, 2005)

Quote:


Originally Posted by *Ruthla* 
Welcome to the tribe! I've definitely been doing better off gluten as well, though I haven't had any tests for Celiac.

What's an alpha intrusion? I've never heard that term before.


an Alpha intrusion is a brain wave that wakes you up when you are in deep sleep and REM. Researchers do not understand why it is happening and there are a few theories floating around. It is actually quite rare less then 1% of the poplulation but found in most people that have fibro and some people that have MS.


----------



## NolaRiordan (Dec 17, 2007)

I just stumbled across this thread. Very interesting. I do not have fibromyaligia but my mother does-- was diagnosed about 5 years ago. She has dealt with a lot of issues that I have read here. I have to say I haven't always been very sympathetic to her, but would like to hear some suggestions on how to support someone with fibro. Any thoughts on what family members could do to help?


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *NolaRiordan* 
I just stumbled across this thread. Very interesting. I do not have fibromyaligia but my mother does-- was diagnosed about 5 years ago. She has dealt with a lot of issues that I have read here. I have to say I haven't always been very sympathetic to her, but would like to hear some suggestions on how to support someone with fibro. Any thoughts on what family members could do to help?

First and foremost- beleive her when she says she's too tired or sore to do something, no matter how great she seems to have felt the day before (or even a few minutes before). Symptoms can come on very suddenly, especialy when we're pushing ourselves. We also have "good days" when we have "almost normal" energy levels, and it's easy for people on the outside to think we're "just faking" the rest of the time.


----------



## Blooming (Feb 16, 2006)

Ruthla has given some good advice.

I don't know what your realtionship is like with your mother but if you can be there if she needs someone to talk to, that could be very supportive.

Also if she goes into a bad flare, offering to run to the store, make her food etc are all beautiful signs of support.

I am coming out of a bad flare. My friends have been so wonderful they have done things like watch my kids, buy me heating pads, mailed me postcards with quotes. Little things can show your love.


----------



## Jeanne D'Arc (Apr 7, 2007)

Hi everyone, checking in.

Saw my new doctor last week, everything went well.

He has decided to test me for Lyme disease and a few other things. He specializes in Fibro/Chronic
fatigue (believes they are both a spectrum of the same ailment)

In his experience 25% of all his CFS/Fibro patients test positive for Lyme, which is amazing considering
how inaccurate Lyme testing is.

It may be something to look into ladies.

Until we do the test he is putting me on something for systemic yeast which I tested high for, and
my Adrenals (ashwagandha). I will let you all know how my subsequent visits and testing goes.

One layer at a time.


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *Blooming* 
I am coming out of a bad flare. My friends have been so wonderful they have done things like watch my kids, buy me heating pads, mailed me postcards with quotes. Little things can show your love.

Can I borrow one of your friends? I've been hit with some whammies lately and find myself sinking into a deep depression now. I've gotten: "My concern is that by helping you I'd do you more harm than good... you really need to get a more 'conventional' form of employment and stick with it" (this is in reference to my having changed careers because of an extended medical leave and being in and out of physical therapy and such for the past 8 years. Oh, and last week I got, "You're beyond the help of friends" when I mentioned that I dozed off while putting ds down for a nap because I'd only managed to get 2 hours of sleep the night before and I wasn't feeling well. Mind you, I'd only dozed off for about 5 minutes max because dd came in the room needing me to help her with some math she was working on.

Now if they knew I've applied for SSDI I think they'd be filling my email inbox with out and out hatemail instead of nastygrams.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *YummyYarnAddict* 
Can I borrow one of your friends? I've been hit with some whammies lately and find myself sinking into a deep depression now. I've gotten: "My concern is that by helping you I'd do you more harm than good... you really need to get a more 'conventional' form of employment and stick with it" (this is in reference to my having changed careers because of an extended medical leave and being in and out of physical therapy and such for the past 8 years. Oh, and last week I got, "You're beyond the help of friends" when I mentioned that I dozed off while putting ds down for a nap because I'd only managed to get 2 hours of sleep the night before and I wasn't feeling well. Mind you, I'd only dozed off for about 5 minutes max because dd came in the room needing me to help her with some math she was working on.

Now if they knew I've applied for SSDI I think they'd be filling my email inbox with out and out hatemail instead of nastygrams.

Oh mama hugs to you. Your friends don't sound supportive in the least. I wish I could do something for you. I do own a DVD that explains Fibro to people. It is a documentary, if you feel like they would watch it and it would help I could mail it to you.

I too, find some friends are more supportive then others. But you are right I am blessed.

Oh and Good luck with the Social Security. Do you think they would be more likely to beleive you then or do you think they would view you as milking the system?

A million hugs mama,






















































































I also hear you on the depression, I am working hard to climb out of my own.


----------



## Blooming (Feb 16, 2006)

Has anyone else seen this?

http://www.pawsforcomfort.com/site/

I never would of thought of a dog as a type of therapy for fibro.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
Has anyone else seen this?

http://www.pawsforcomfort.com/site/

I never would of thought of a dog as a type of therapy for fibro.

I can only imagine the smell of a dog to be more of a trigger than the "heat" helping, not to mention having to care for the animal and that causing more stress. I don't think it would help me personally.

I've been dealing with a sick 6yo for the past day or so- he woke me at 4:00 AM to change his sheets after he threw up in them, and I don't know how long it will take me to recover from that disrupted sleep. Right now he's downstairs with my Mom- I'm completely dragging today.


----------



## Blooming (Feb 16, 2006)

Oh Ruthla, I hope you catch up on your sleep and and both you and your son feel better.


----------



## tireesix (Apr 27, 2006)

Ooooooo, I lost this thread ages ago, so glad to have found it............. Pregnancy is tiring enough as it is without this....... Absolutely bloody knackered and sore......

Oh, and, apparently, I was more prone to developing Fibro because of my EDS......... I just want my pain relief back. I am seriously considering going back onto Buprenorphine despite being pregnant, I just can't hack this pain and the dihydracodeine is slowly deestroying my guts and it always worsens my IBS.....

HUgs to you all......


----------



## purple_kangaroo (Feb 20, 2006)

Hi, I just wanted to check in and say that I am still seeing a fairly steady improvement. I added a high-vitamin cod-liver oil, more probiotics, and a few other supplements (including a calcium/magnesium whole-food supplement, nettles and quercitin for allergies and some especially high-antioxidant foods).

I also completely cut out refined sugars and even most unrefined sugars, all grains (even gluten-free grains), and all dairy products (I'm dairy-intolerant) from my diet.

I'm really encouraged with how much improvement I've seen in my pain/fatigue levels and in my general health.

Oh, and I've been making a point in general to take better care of myself, take more epsom baths (not too hot)







and get more sleep, and also saw my chiropractor and got a Bowen therapy treatment (sort of like chiro, but gentler and manipulates the muscles instead of the bones).

Just thought I'd share what seems to be working for me.

For those who are having sleep problems, also, I've found that really limiting the light in my room helps somewhat. I also found that my dust mite allergies (that I didn't know I had) were hugely affecting my sleep. I now have dust mite covers on my mattress and pillows and I wash all my bedding in HOT water every 3 days (including blankets). That helps a lot for me.

I do also have the window everyone is talking about. Thankfully I have an understanding DH who is willing to let me go to bed when I need to. I need to take advantage of that more. I'm also working on getting a more consistent bedtime so I can hopefully help my body clock adjust to getting tired at a reasonable bedtime.


----------



## EStreetMama (Sep 5, 2003)

Quote:


Originally Posted by *purple_kangaroo* 
Hi, I just wanted to check in and say that I am still seeing a fairly steady improvement. I added a high-vitamin cod-liver oil, more probiotics, and a few other supplements (including a calcium/magnesium whole-food supplement, nettles and quercitin for allergies and some especially high-antioxidant foods).

I also completely cut out refined sugars and even most unrefined sugars, all grains (even gluten-free grains), and all dairy products (I'm dairy-intolerant) from my diet.

I'm really encouraged with how much improvement I've seen in my pain/fatigue levels and in my general health.

Oh, and I've been making a point in general to take better care of myself, take more epsom baths (not too hot)







and get more sleep, and also saw my chiropractor and got a Bowen therapy treatment (sort of like chiro, but gentler and manipulates the muscles instead of the bones).

Just thought I'd share what seems to be working for me.

For those who are having sleep problems, also, I've found that really limiting the light in my room helps somewhat. I also found that my dust mite allergies (that I didn't know I had) were hugely affecting my sleep. I now have dust mite covers on my mattress and pillows and I wash all my bedding in HOT water every 3 days (including blankets). That helps a lot for me.

I do also have the window everyone is talking about. Thankfully I have an understanding DH who is willing to let me go to bed when I need to. I need to take advantage of that more. I'm also working on getting a more consistent bedtime so I can hopefully help my body clock adjust to getting tired at a reasonable bedtime.

Thanks for posting...great to hear about some things that are working!

I was mostly grain free for about 6-8 weeks this fall. I didn't really notice feeling better until I was back on the grain and I felt worse...much more pain.


----------



## Ruthla (Jun 2, 2004)

I'm glad you're feeling better PurpleKangaroo. EStreetMama- I noticed the same pattern with most dietary changes that help me. The improvements are so subtle as to be hardly noticable, and only after re-introducing the problem foods can you see the difference (but by then you need to s l o w l y heal from the infraction before getting back to the level of improvement you had before.)

Last night I skipped staying up to watch American Idol, and got to bed around 9:30 PM. That made a big difference, I think. I was able to check the AI thread this morning and find out who was voted off without having to watch the whole show.









It's just been a busy week for me. DS was sick on Saturday and Sunday so that threw me for a loop. Then we were up late on Tuesday night sewing Purim costumes, and I was so sick yesterday! Not a fibro flare, but an actual tummy bug that left me with diarhea and nauea and almost no appetite. And of course my fibro symptoms intensified during the illness.

Today is supposed to be a fast day (sunrise to sunset) but after basically fasting yesterday (I had about 600 calories total) I think I'll eat what my tummy can handle today, and drink what my tummy can handle, and not worry about the fast at all. My daughters are fasting though.

Tonight will be another late night because of Purim and a big celebration at shul, but then we can all sleep late tomorrow since nobody has school.

Diet wise, I've been completely avoiding dairy except for butter, completely avoiding legumes except for small amounts of tamari and some soy oil, and I've been 100% gluten free, and severely limiting the quantities of GF grains. I have about 1-2 servings of rice and/or corn a week.


----------



## umami_mommy (May 2, 2004)

i know someone who has had pretty severe symptoms for a while now... pain, sleep apnea, very low energy level, lifelong headache, foggy.

she finally went wheat and dairy free and lots of supplements, esp high doses of D (based on a blood test) and is seeing great improvement. he headaches are gone as long she doesn't cheat. the fogginess is finally lifting and the pain is much better too. energy level is also much improved.

the ND said sprouted wheat is okay, but she doesn't like sprouted stuff, so she's totally wheat free.


----------



## loobop (Jan 28, 2005)

I'm subbing so I can hopefully come back later and read the whole thread.


----------



## Blooming (Feb 16, 2006)

I was just wondering if anyone has tried diffrent beds to get a better nights sleep? I've been noticing lately that my bed feels like a rock and I keep waking up feeling worse and worse. My bed is a cheapy.

Anyone have any thoughts? Would a better bed help me or is this just the name of the game?


----------



## spiderdust (Oct 3, 2005)

Quote:


Originally Posted by *Blooming* 
I was just wondering if anyone has tried diffrent beds to get a better nights sleep? I've been noticing lately that my bed feels like a rock and I keep waking up feeling worse and worse. My bed is a cheapy.

It might, and it might not.

I have a rather costly pillowtop mattress, and I found that I felt *worse* after we got it. It's too soft. The futon I was sleeping on before felt like sleeping on a rock and I felt uncomfortable, but now I feel as if I dislocate every bone in my body in my sleep!

On the other hand, the foam mattress on the day bed in another room feels much better.


----------



## tireesix (Apr 27, 2006)

I found a softer bed helps my fibro but unfortunutely, a soft bed also means that my hypermobile joints are allowed way to much give and I end up in worse pain with that (I just spent a night on my DHs soft bed after being kicked out of mine by the children and I am suffering lol............ Ok, I want to cry, only allowed codeine due to being pregnant............).....

I am having real issues with the children, DD2 is a real climber and its really hurting, she is either making my joints try to pop out their sockets or somehow, her feet and hands are CONSTANTLY finding tender spots. I have a real bad on just under my rib kind of area, I never had it before and when she caught it yesterday I yelled at her.

Gah.........


----------



## Blooming (Feb 16, 2006)

mama. It must be very hard to be pregnant and not be able to take your meds. I hope you get some good sleep soon. Do you live somewhere where it is spring yet? I'm just hoping that the warm air will help soon.

Quote:


Originally Posted by *tireesix* 
I found a softer bed helps my fibro but unfortunutely, a soft bed also means that my hypermobile joints are allowed way to much give and I end up in worse pain with that (I just spent a night on my DHs soft bed after being kicked out of mine by the children and I am suffering lol............ Ok, I want to cry, only allowed codeine due to being pregnant............).....

I am having real issues with the children, DD2 is a real climber and its really hurting, she is either making my joints try to pop out their sockets or somehow, her feet and hands are CONSTANTLY finding tender spots. I have a real bad on just under my rib kind of area, I never had it before and when she caught it yesterday I yelled at her.

Gah.........


----------



## tireesix (Apr 27, 2006)

Spring is supposedly on the way and its that that I am hanging onto lol!!!!!!!!!! I just really want this first trrimester over with, its so uncomfortable. I thought maybe the tiredness was just pregnancy tiredness to begin with but its following the same pattern as my fibro tiredness, just mixed in with the pregnancy tiredness so I am sure you can imagine just how tired I am lol.......... I should have expected it.......... I usually suffer some fatigue, but every 3 months or so I get hit real bad for a few weeks and then it lifts again and I just got so wrapped up in other stuff I forgot about it being that time again.

What makes it even worse is these stupid hypermobile joints, last week I subluxed my left shoulder, not much in the wayy of pain relief can deal with it but at least buprenorphine takes the edge off......... Anyway, normall, within a couple of days it will settlee back where its supposed to be, it will be really crunchy and loose and all of a sudden will give a good old crunch and its done with. Well last week, instead of taking a couple of days, it took 5. Theere are people worse off than me by a long shot but I guess I am finding things hard because I can't just rely on my pain relief patches, I don't have that safety net and the thought of not having that safety net is just really bothering me.......... I can't explain it properly, I think all I can say is that I am so uncomfortable right now, with the fibro, IBS, EDS and this really unexpected pregnancy.......


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *tireesix* 
Spring is supposedly on the way and its that that I am hanging onto lol!!!!!!!!!! I just really want this first trrimester over with, its so uncomfortable. I thought maybe the tiredness was just pregnancy tiredness to begin with but its following the same pattern as my fibro tiredness, just mixed in with the pregnancy tiredness so I am sure you can imagine just how tired I am lol.......... I should have expected it.......... I usually suffer some fatigue, but every 3 months or so I get hit real bad for a few weeks and then it lifts again and I just got so wrapped up in other stuff I forgot about it being that time again.

What makes it even worse is these stupid hypermobile joints, last week I subluxed my left shoulder, not much in the wayy of pain relief can deal with it but at least buprenorphine takes the edge off......... Anyway, normall, within a couple of days it will settlee back where its supposed to be, it will be really crunchy and loose and all of a sudden will give a good old crunch and its done with. Well last week, instead of taking a couple of days, it took 5. Theere are people worse off than me by a long shot but I guess I am finding things hard because I can't just rely on my pain relief patches, I don't have that safety net and the thought of not having that safety net is just really bothering me.......... I can't explain it properly, I think all I can say is that I am so uncomfortable right now, with the fibro, IBS, EDS and this really unexpected pregnancy.......

Katie-it sounds like you have a lot going on, I hope some of it (or better yet all) clears up soon.


----------



## supakitty (Mar 6, 2002)

I find myself in the strangest place right now... my pain has lessened, I still live with it every day, but it has gotten better since the worst of it in Nov/Dec/Jan... However, I find myself sunk deeply into a depression and also feeling this terrible anxiety about anticipating pain. You know what I mean? The "what if" feeling, what if tomorrow is a bad day? What if I can't do what's expected of me? What if I want to curl up into a ball and disappear? I long for a day that I just feel comfortable in my body again, I don't need happiness, I just long so badly to be content and sit quietly without pain and enjoy a moment without fear and worry and anxiety... Will this day come? I need some love mamas.

-Laura


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
I find myself in the strangest place right now... my pain has lessened, I still live with it every day, but it has gotten better since the worst of it in Nov/Dec/Jan... However, I find myself sunk deeply into a depression and also feeling this terrible anxiety about anticipating pain. You know what I mean? The "what if" feeling, what if tomorrow is a bad day? What if I can't do what's expected of me? What if I want to curl up into a ball and disappear? I long for a day that I just feel comfortable in my body again, I don't need happiness, I just long so badly to be content and sit quietly without pain and enjoy a moment without fear and worry and anxiety... Will this day come? I need some love mamas.

-Laura

YES Laura! I know what you mean. I have felt what you are describing. So much so that I am taking a chronic pain group/class through my local hospital about how the anxiety(and other emotions) feed into the pain and vice versa. We are learning about relaxation techniques, looking at our behavoir/thinking, etc. I am only on the third class but I feel it is helping.

Everyday is still a challange (I am also depressed) but I am trying to let a little light in. I have become so afraid of the pain/anxiety that our whole lives are moving around it. Really, I am even now afraid to let DS go to his preschool which is half an hour away because I fear that DH or I will not be able to pick him up.

I wish I knew if the pain free, worry free days would come. I hope they do. I even try to pray that they do (although I'm not sure who I'm praying to anymore).

One of the things we learned today that stuck out for me was to treat yourself the way you would treat your friend. For example, I often struggle to find worth in myself because I haven't been able to do the things other moms are able to do. So I get down on myself and tell myself how worthless I am and such. Would you ever say that to a friend? No because you would have no friends then.

I'm sorry your in pain, I'm here with you. I have to have faith that we will find our way. Sending you love and light....

(Sorry so long)

Jenn


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *supakitty* 
I need some love mamas.


----------



## Blooming (Feb 16, 2006)

Have any of you tried the supplement called tryptophan?


----------



## supakitty (Mar 6, 2002)

I have been in terrible pain the last two days so I finally tried Lyrica 50mg this morning... So far the pain is noticeably less but I feel funky, not that I don't usually feel funky but this is like sort of dizzy with blurry vision kinda funky. I'll update more in case people are interested. It did manage to take away the burning skin feeling and I'm glad for that. We'll see...

-Laura


----------



## Ruthla (Jun 2, 2004)

I hope the Lyrica works for you. I had a pretty severe reaction to it.

I've also been in pain the last few days. I'm not overly tired, but my arms have been hurting quite a lot. Maybe it's a simple as weaning off the topical pain meds too soon- feeling better and forgetting to use the capsicaine cream and then the pain came back with a vengence? Or maybe I just overdid things because I felt better?

In any case, my shoulders were burning so bad last night it kept me from sleeping, but icyhot provided enough relief to let me sleep. This morning, after my shower I used the cayene pepper cream, which provides more long-term relief than the icyhot.


----------



## blissful_maia (Feb 17, 2005)

Quote:


Originally Posted by *Ruthla* 
I hope the Lyrica works for you. I had a pretty severe reaction to it.

Would you mind explaining what your reaction was? I have been thinking/wondering about this drug for a while (probably just because my pain and exhaustion have been particularly bad the last few weeks) and am curious to hear about anyone's experiences.

Also interesting to hear you benefit from capsaicin, I have a cayenne-ginger rub I use from time to time with good results as well.


----------



## supakitty (Mar 6, 2002)

Okay so I took it at 7:30AM and it's 4:00PM and besides being pretty sleepy today it did take away the burning pain. I feel twinges of it coming back now. My bottle says to take it twice a day so I will take it again at bedtime and see how I feel in the morning. I'm not sure how I will function at work but then how is it any different than being in pain at work? So far though only really feeling sleepy and still a little visually funky.

-Laura


----------



## supakitty (Mar 6, 2002)

I'm curious to know what other people here take at bedtime to help them sleep. Lemme hear about your bedtime meds. FYI, still on the Lyrica, noticing improvement with pain but completely funked out in space.

-Laura


----------



## krankedyann (May 28, 2005)

I've used Rescue Remedy sleep with success.


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *supakitty* 
I'm curious to know what other people here take at bedtime to help them sleep. Lemme hear about your bedtime meds. FYI, still on the Lyrica, noticing improvement with pain but completely funked out in space.

Over the years, I've tried just about everything. Before I got pregnant, I was using a gram of passionflower, a gram of valerian (standardized), and a first generation antihistamine. That combo worked pretty well to help me get somewhat crappy sleep. Getting enough iron helped my RLS go away.

Once I got pregnant, I was suddenly able to sleep for the first time in about a decade. I can still sleep now (DS is 11mo). It's lovely.

I kinda thought once I got sleep the fibro would fade away. It hasn't, but my sleep is interrupted (cosleeping, nursing) somewhat, so perhaps that explains it. I don't take anything, of course, since we co-sleep.


----------



## bigeyes (Apr 5, 2007)

I take melatonin and nortriptyline right now, but I'm going to ask for something new, I hate the side effects from antidepressants, and if you aren't depressed why take them, even in smaller doses?

I've also taken amitriptyline before and hated the side effects from it. I won't take ambien, so I don't know how many options are left.

Do they still prescribe xanax? I can't take klonapin, it gives me headaches, tried that before.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
I take melatonin and nortriptyline right now, but I'm going to ask for something new, I hate the side effects from antidepressants, and if you aren't depressed why take them, even in smaller doses?

I've also taken amitriptyline before and hated the side effects from it. I won't take ambien, so I don't know how many options are left.

Do they still prescribe xanax? I can't take klonapin, it gives me headaches, tried that before.


Just curious, does the nortriptyline give you nightmares? I'm taking it now for depression, I don't think it makes me tired but I am still on a low dose of 10mg spread out through out the day. And how long did the melatonin take to start working?


----------



## bigeyes (Apr 5, 2007)

It makes me tired and draggy, I think. No nightmares that I recall. I think it is one that sometimes makes people gain weight too, so I don't really like the idea of taking it.

I found that when I switched to time released melatonin it worked right away, I just don't know if it's _enough_ to keep me asleep all night.


----------



## tireesix (Apr 27, 2006)

Thankfully pregnancy is helping me sleep, but even when I am knackered it still takes a while to drift off.

I was wondering whetheer anyone knew of any helpful herbals for fibro that can be taken during pregnancy or is it just wishful thinking?


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *blissful_maia* 
Would you mind explaining what your reaction was? I have been thinking/wondering about this drug for a while (probably just because my pain and exhaustion have been particularly bad the last few weeks) and am curious to hear about anyone's experiences.

It made me tired, dizzy and slightly nauseated. The vertigo was disabling- A single "starter dose" kept me foggy and lightheaded for about 24 hours. I had to sleep all afternoon, couldn't cook dinner or take care of my kids at all, I couldn't drive, etc. All this on 1/4 to 1/8 what should have been a typical daily dose.

Quote:


Originally Posted by *supakitty* 
I'm curious to know what other people here take at bedtime to help them sleep. Lemme hear about your bedtime meds. FYI, still on the Lyrica, noticing improvement with pain but completely funked out in space.

I take 5-HTP (100mg) about half an hour before going to bed. I also keep melatonin (.5 mg chewable tablets) next to my bed and take it as needed if I'm having an extra hard time sleeping that night. Usually I end up needing it if I took the 5-HTP too soon/didn't get to bed right away after taking it.

Quote:


Originally Posted by *Blooming* 
And how long did the melatonin take to start working?

Melatonin works immediately- no need to build up to a working dose. The chewables work within minutes, the kind you have to swallow whole take about half an hour to kick in.

Quote:


Originally Posted by *tireesix* 
I was wondering whetheer anyone knew of any helpful herbals for fibro that can be taken during pregnancy or is it just wishful thinking?

With any drug or herb during pg you need to weigh benefits and risks. Are we talking "discomfort" or are we talking "I can't fall asleep and then I'm too nauseated from fatigue to eat well the next day and if I took something to help me sleep the baby would benefit from better nutrition"?

Camomile tea is certainly safe for pg women, at least in moderate doses (a cup or two per night.) Extra magnesium is safe and probably even beneficial for the baby. I've heard that mag works best for fibro when combined with malic acid, which is also safe for pg- especially if you get the malic acid in the form of good quality apple cider vinegar.


----------



## Blooming (Feb 16, 2006)

I took the melotoinan last night, It was the first time I had slept that well in a LONG time! I plan to take it again tonight. I do want to do some reserach about the long term risks, like is this a once you take it you always have to take it kind of drug? It was so great not to be up 5-6 times a night with night terrors.

Ruthla- I've also been thinking about taking the 5-HTP. (for depression) do you find it makes a diffrence? I've been reading The Mood Cure and it also mentions Fibromyalgia in it. I would like to try some of it's suggestions. I've already increased my egg, turkey, beef, chicken, and pork intake (Not an easy thing for me to do as I'm not a fan of meat). I would like to start taking fish oil next. The book sounds a little too good to be true, and you know the saying-so I am taking it slow.

Hugs tireesix, I don't know much about herbs but I have hear that this book is a great resource: http://www.ashtreepublishing.com/boo...ildbearing.php.


----------



## bigeyes (Apr 5, 2007)

The doc is switching me off nortriptyline and onto halcion if it doesn't bug me.

anyone tried it?


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
The doc is switching me off nortriptyline and onto halcion if it doesn't bug me.

anyone tried it?

Sorry, I haven't heard of it.

Tried the melotonin again last night, it didn't work.







: I really need to get a streak of good sleep soon.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
Ruthla- I've also been thinking about taking the 5-HTP. (for depression) do you find it makes a diffrence?

It's hard to say because I weaned myself off of Prozac shortly after starting the 5-HTP. This was a couple of years ago, and I haven't had much trouble with depression since then. But then the depression has always had its ups and downs and the meds didn't always work, plus I've made other changes such as eliminating allergens, learning to respect my limits, etc. It's hard to say how much is the supplement and how much is from the other factors.


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *bigeyes* 
The doc is switching me off nortriptyline and onto halcion if it doesn't bug me.

anyone tried it?

I tried halcion years and years ago and it helped for a while and then it stopped helping. Then I tried Ambien -- half a pill one time -- and I had the hypnotic side effect and that was more than enough for me to not try it ever again. Then I switched to Sonata which is in the same class as Ambien but has a lesser (reported) frequency of the hypnotic side effects and did well with that. I've tried Rescue Sleep which doesn't work for me at all. Melatonin is hit or miss and when it's a hit, it helps me get to sleep, but I'm wide awake a couple of hours later and have to take more. Right now I'm using Rozerem here and there and it seems to be okay.


----------



## *Amy* (Jun 16, 2004)

Hello Mamas. I am subbing, but hope to go back and read the thread as I have time. After 16 years of fatigue and pain (along with anemia, hypoglycemia, headaches, and TMJ), my doctor and I are very close to making the fibromyalgia diagnosis. I am just relieved to *FINALLY* understand what is wrong with me after all this time. Now I'm on the journey to healing. I hope to learn a lot from all of you!


----------



## *Amy* (Jun 16, 2004)

Quote:


Originally Posted by *supakitty* 
I see myself, 34 years old, once-strong, ambitious woman, now struggling to get through each day, living with a chronic illness that has changed every part of my life.

Supakitty, that brought tears to my eyes. I'm also 34, and related so much to your post.


----------



## spiderdust (Oct 3, 2005)

Since becoming pregnant, I haven't been able to take *anything*. Nothing for pain, nothing for sleep... ugh. The pregnancy is really aggravating my hip dysplacia, and I'm worried I'll be in a wheelchair before I deliver.

I had forgotten about Rescue Sleep... I know it's kind of hit or miss, but I might give it a try.


----------



## Blooming (Feb 16, 2006)

I'm sorry your having such a hard time. I hope the Rescue sleep helps.

Quote:


Originally Posted by *spiderdust* 
Since becoming pregnant, I haven't been able to take *anything*. Nothing for pain, nothing for sleep... ugh. The pregnancy is really aggravating my hip dysplacia, and I'm worried I'll be in a wheelchair before I deliver.

I had forgotten about Rescue Sleep... I know it's kind of hit or miss, but I might give it a try.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
Sorry, I haven't heard of it.

Tried the melotonin again last night, it didn't work.







: I really need to get a streak of good sleep soon.

How much melatonin did you take that didn't work? How long before bed did you take it? It's possible it would have helped if you'd taken more later in the evneing.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
How much melatonin did you take that didn't work? How long before bed did you take it? It's possible it would have helped if you'd taken more later in the evneing.

I'm taking 3mg an hour before I go to bed. It seems to be helping the first half of the night now.

I've been taking it for 4 nights now. I'm hoping it will work tonight as I am quite literally in pain from head to toe. I think part of the problem is that the pain in my chest is still waking me up some nights, combine that with needing to pee, pain, and Night terrors and no wonder I'm struggling to sleep.

Although I will say the melatonin has down graded my night terrors to nightmares.


----------



## Indigo73 (Aug 2, 2002)

I usually take a second melatonin if I wake up before 3AM, otherwise I am too groggy in the morning. This moring I woke just before 4 and since I have to be up at 6:30... Well I am going to do a little work from home with my couple of hours.


----------



## *Amy* (Jun 16, 2004)

I'm wondering if any of you experience nausea at all? I've had terrible morning sickness-like nausea all month (and no, I'm not pregnant) and I can't figure out if it is related to this, or to being on the pill.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by **Amy** 
I'm wondering if any of you experience nausea at all? I've had terrible morning sickness-like nausea all month (and no, I'm not pregnant) and I can't figure out if it is related to this, or to being on the pill.

I do but I have had stomach issues all my life, never stopped to think it might be the Fibro.

Warning vent ahead:
You know one of the things I hate about this sickness, is the way it has taken away my social life. I try not to let the pain (and fatigue) get the best of me but it seems to win more then I would like it to. For instance tonight we had a chance to go have dinner with friends. They have kids the same age as me and we love them but I just couldn't even wrap my brain around making the 45min drive and hanging out. Of course DS6 is bummed and I feel like the worlds worst mother. I don't want him growing and saying we could never do that because of my mother. I've also slid into a BAD habit of easing my guilt by buying him things(nothing big), letting him rent movies, and eat food that I never would of prefibro. Yuck. I know so many have it worse and I should count my blessings and all that but when I see that look of disappointment on his face I just feel like crap.


----------



## purple_kangaroo (Feb 20, 2006)

Quote:


Originally Posted by *Blooming* 
I do but I have had stomach issues all my life, never stopped to think it might be the Fibro.


Stomach issues and IBS are common with fibro. For me figuring out my food intolerances and eating more probiotic-heavy foods has helped a lot.


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by **Amy** 
I'm wondering if any of you experience nausea at all? I've had terrible morning sickness-like nausea all month (and no, I'm not pregnant) and I can't figure out if it is related to this, or to being on the pill.

I'm queasy at some point just about every day. I don't know if it's just from the fibro pain, or the migraines, or IBS or what, but the severity waxes and wanes to the point where I can drop 20-30lbs in a month when it's really bad. Right now it's getting pretty bad and I'm down 12lbs in the past couple of weeks. I've tried homeopathics and probiotics, but they're also tinkering wtih my anti-epileptics which is increasing my migraines to twice a day ... I just can't win it seems.







And the pill? Uh uhn, no way. I can't handle it. I'm extremely sensitive to hormonal fluctuations. I've never met a bcp that didn't give me a major case of the queasies.


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *Blooming* 
Warning vent ahead:
You know one of the things I hate about this sickness, is the way it has taken away my social life. I try not to let the pain (and fatigue) get the best of me but it seems to win more then I would like it to. For instance tonight we had a chance to go have dinner with friends. They have kids the same age as me and we love them but I just couldn't even wrap my brain around making the 45min drive and hanging out. Of course DS6 is bummed and I feel like the worlds worst mother. I don't want him growing and saying we could never do that because of my mother. I've also slid into a BAD habit of easing my guilt by buying him things(nothing big), letting him rent movies, and eat food that I never would of prefibro. Yuck. I know so many have it worse and I should count my blessings and all that but when I see that look of disappointment on his face I just feel like crap.









My kids have only known me as "fibro-mama" which is a blessing and a curse I suppose. The summers are easier because I can sort of manage better outdoors at the park while they run around. As my dd gets older though (she just turned 6) she sees that I can't just "pick up and go" like other moms can, and it doesn't help that most of the other moms I know with kids the same age are about 10+ years younger than I am (I'm 39). I try to plan things for my "high energy" point of the day, but my "high energy" point really isn't much. I mean, some days it's my shower! So I'm really pushing it and I'm crashing big time, and in spite of it I'm getting "so-and-so's mom is really cool and does x, y, and z" and ... "I hate you!" and things like that and it really hurts! I'm pushing and pushing and failing and failing. For example, Saturday morning I got up early to clean the playroom, then we went to the park after breakfast, then spent two hours walking around the zoo, back home for lunch. Then went for a two hour hike with friends and I became "evil mom who never does fun stuff" because I wouldn't give my 51lb dd a piggy back ride part of the way. Mind you, I was carrying my 21mo ds in a sling the entire time and I took the big jogger stroller in case dd got super tired.

It IS hard.

We went grocery shopping later in the day and my dd wanted me to buy her treats -- organic lolly pops at Trader Joes -- but still... I didn't want to reward her because she didn't get all the "mommy time" she demanded (which is how she phrased it) in the way she demanded (she had me, just didn't get me to physically carry her). My mother used to bribe me with food because she could never apologize and it resulted in my weighing 340lbs by the time I graduated HS and while I'm an "ideal weight" for my height now (145lbs at 5'8"), and have been for a decade, I still struggle with what food "means" and how to nourish my soul and I don't want that for my children.

I'd like more voices to chime in here. What do we do? What can we do? This obviously affects our parenting ... and it IS hard.


----------



## purple_kangaroo (Feb 20, 2006)

Well, I'm not really sure if grain-free has made a real difference for me or not. My health always fluctuates a lot, so it's hard to tell if something is actually working or if it's just in an upturn for no reason, KWIM?

I got really sick with the worst fatigue ever, and a lot of other symptoms, about three weeks ago. Fatigue to the point of having trouble just getting dressed, some days.

I had some blood tests run, and found out Friday that I was positive for mono (Epstein-Barr). I don't know whether I just caught it 3 weeks ago, whether I've had it for a few months, or whether I have the chronic version and have had it for years, and maybe that's an underlying cause of my chronic fatigue syndrome.

I've been adding some soaked/sprouted grains back into my diet (quinoa, millet, brown rice) and have seemed to tolerate those ok, I think. At least I'm no worse than I was before. But where I am right now is pretty sick. So I really don't know.

Now I'm going back to bed.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *YummyYarnAddict* 







My kids have only known me as "fibro-mama" which is a blessing and a curse I suppose. The summers are easier because I can sort of manage better outdoors at the park while they run around. As my dd gets older though (she just turned 6) she sees that I can't just "pick up and go" like other moms can, and it doesn't help that most of the other moms I know with kids the same age are about 10+ years younger than I am (I'm 39). I try to plan things for my "high energy" point of the day, but my "high energy" point really isn't much. I mean, some days it's my shower! So I'm really pushing it and I'm crashing big time, and in spite of it I'm getting "so-and-so's mom is really cool and does x, y, and z" and ... "I hate you!" and things like that and it really hurts! I'm pushing and pushing and failing and failing. For example, Saturday morning I got up early to clean the playroom, then we went to the park after breakfast, then spent two hours walking around the zoo, back home for lunch. Then went for a two hour hike with friends and I became "evil mom who never does fun stuff" because I wouldn't give my 51lb dd a piggy back ride part of the way. Mind you, I was carrying my 21mo ds in a sling the entire time and I took the big jogger stroller in case dd got super tired.

It IS hard.

We went grocery shopping later in the day and my dd wanted me to buy her treats -- organic lolly pops at Trader Joes -- but still... I didn't want to reward her because she didn't get all the "mommy time" she demanded (which is how she phrased it) in the way she demanded (she had me, just didn't get me to physically carry her). My mother used to bribe me with food because she could never apologize and it resulted in my weighing 340lbs by the time I graduated HS and while I'm an "ideal weight" for my height now (145lbs at 5'8"), and have been for a decade, I still struggle with what food "means" and how to nourish my soul and I don't want that for my children.

I'd like more voices to chime in here. What do we do? What can we do? This obviously affects our parenting ... and it IS hard.

I understand what you are going through.







Thank you so much for sharing. I do have to stop with the food thing. I really don't want him to grow up thinking food=love or stuff=love. I would also love to brainstorm and think about how we can support our children in a healthy way.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *YummyYarnAddict* 







My kids have only known me as "fibro-mama" which is a blessing and a curse I suppose.

Yup, my kids too. But, unlike you, I don't push myself beyond my physical limits, nor do I take it personally when my kids act like kids and pull the "I hate you because you won't play a 5th game of candyland with me" thing.

I'm not saying it's easy- it's certianly very, very hard. But I don't apologize for my limits. I explain that other moms have different rules and that's fine- this is what *I* can handle and that's how it's going to be. Nobody is immune from their kids thinking that their friends have it better, or their friends' parents can do stuff that theirs can't. It's just that it's easier to take it personally when you're already having a hard time accepting your own limits.

I have a lot more time to snuggle with my kids and just *be* with them than some "healthier" parents who are always running all over the place.

Quote:


Originally Posted by *purple_kangaroo* 
Well, I'm not really sure if grain-free has made a real difference for me or not. My health always fluctuates a lot, so it's hard to tell if something is actually working or if it's just in an upturn for no reason, KWIM?









I know *exactly* what you mean!

But after keeping certain foods out of my diet, then getting the same results every single time I re-introduce it, I'm able to say with clarity that dairy makes me angry, congested, and can lead to fibroflares.

I haven't tested wheat or other gluten items repeatedly, but I'm not risking it right now with Passover around the corner. First of all, I have way too much to do to risk a reaction right now. Secondly, I want to test my body's response to gluten free oats, and I need to "eat clean" for a while or I won't be able to localize any reaction (or recognize the lack of reaction if I'm reacting to something else simultaneously.)


----------



## YummyYarnAddict (Sep 24, 2007)

Quote:


Originally Posted by *Ruthla* 
Yup, my kids too. But, unlike you, I don't push myself beyond my physical limits, nor do I take it personally when my kids act like kids and pull the "I hate you because you won't play a 5th game of candyland with me" thing.

I'm not saying it's easy- it's certianly very, very hard. But I don't apologize for my limits. I explain that other moms have different rules and that's fine- this is what *I* can handle and that's how it's going to be. Nobody is immune from their kids thinking that their friends have it better, or their friends' parents can do stuff that theirs can't. It's just that it's easier to take it personally when you're already having a hard time accepting your own limits.

I have a lot more time to snuggle with my kids and just *be* with them than some "healthier" parents who are always running all over the place.

I know. I've gotten really really bad about that this year in particular since my health has taken a few hits on several fronts. In Jan I went for my annual "check up" for my hip replacement which I've missed for the past three years because my previous orthopod passed away and found out that I have osteoporosis in my pelvis. I also need a surgical revision of the prosthetic and have been given even more restrictions and "hip precautions." That all took me by surprise but it explains the sharp increase in my lower back and hip pain too. Then my epilepsy meds just aren't working anymore and this whole med adjustment is throwing me for a loop and I'm uber sensitive to medication side effects. Then throw in the PPD I never really recovered from and financial strain and ... stir ... It's all a bit much for a single mom with no support from family or friends and we moved to a new town just over a year ago which adds to the isolation, and I had to pull my dd out of public school (another long story) ... and it's all more than a bit maddening. I really WANT to play that 5th game of Candy Land and be excited and energetic about it too, but really, I'm beyond exhausted and in pain. I feel myself shrinking emotionally from being slammed up against the wall and pummelled. I did let my dd stay up to watch Harry Potter on tv Saturday night (we had read the book already and I'd seen the movie) and she was so tired Sunday that we took a "family nap" after we got home from Hebrew school which helped a bit, but really, I need to do better. My neuro did refer me to a health psychologist which I'd never heard of before but I'm willing to give it a whirl.

I think that if I didn't allow myself to be pushed beyond my physical limits at all, there would be days where I wouldn't do more than go to the bathroom.


----------



## Blooming (Feb 16, 2006)

I wonder if the health psychologist is a bit like a group I am attending. It is called the mind, body connection. I find it to be hard work but am learning some useful things from it. A lot of it is cognitive therapy, (looking at what our thought patterns are and how we can change them).

It is very hard to change a lifetime of thought patterns but I am hoping it helps. We also meditate.

The book we're using is called Managing pain before it manages you.

Perhaps to make us feel better about the mom guilt we can list the things we DID do and try to take pride in them.

Today I: (Today was a good day for me pain wise)
Took a shower (For some reason this is very painful for me)
Took my DS3 for a short walk
Visited a friend with him
Read him a book
Pushed him in his swing
Held him close while we napped








Pretended to fish while we layed in the sun
Was able to dress him (also very hard for me)
Did DS6's homework with him
Held him and talked about his day at school
Did a science experiment with him
Read him to sleep
Washed DS's favorite hat

Tomorrow I may be hung over form doing too much (that is another thing we are learning in this class is balance).

Last week I had such a bad day that the only thing on my list was:

I zippered DS's coat for him. (I had never been so happy to zipper a coat in my life)
Snuggled with both kids while we watched a movie.


----------



## purple_kangaroo (Feb 20, 2006)

I like the idea of focusing on what we CAN do.

Today I:

Laid in bed and helped the older kids with their schoolwork and read books to the toddler.

Fed the kids lunch.

Spent a bit of time on the computer.

Cleared out a small spot in one of my clutter rooms while finding some books for my kids and for school.

Intervened with kid scuffles as needed.

Turned on a video for the kids.

Helped toddler pull down her pants whenever she needed to go potty.

Laid in bed and made some phone calls.

Listened to my 7yo read to me for school.

Gave lots of hugs and smiles to my kids.

Drank glasses and glasses of water that the toddler insisted on bringing me.

Hugged and kissed my husband.

Admired the kids' play.

Nursed the toddler.


----------



## Ruthla (Jun 2, 2004)

I went to my rheumy today, and he increased the dose of the medication I'm already taking (and know I can tolerate!) No more playing games with new meds, at least not for now. He also gave me a referral for PT, which I'm going to wait until after Passover to deal with.

The new script has 4 refills, which means I won't have to see him again for about 5 months.


----------



## supakitty (Mar 6, 2002)

Which medication helps you Ruthla (if you don't mind my asking)?


----------



## Ruthla (Jun 2, 2004)

Ultram. I was taking 100mg of the extended release (ultram ER) and it was just increased to 200mg per day.


----------



## Ruthla (Jun 2, 2004)

Ugh. This morning I felt "high" and now I'm just feeling tired (in spite of my nap) and groggy and still slightly dizzy and nauseated and hypersensitive to sound. On the plus side, my shoulders aren't hurting at all.

I don't know if this means I can't tolerate the increased dosage, or if I just need a little while to adapt to it. In the meantime, I'm going to continue taking the lower dose on nights that I really need to be productive the following day (like tonight) and test out the higher dose on Friday nights to see how I feel on Saturday.

I'll stick with the low dose (or skip it entirely) on the seder nights because I'll be drinking wine (the sugar in grape juice makes me feel sick, and I tolerate it even worse than alcohol) plus I want to test my reaction to the gluten free oat matzah.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
Ultram. I was taking 100mg of the extended release (ultram ER) and it was just increased to 200mg per day.

I take this too. Every afternoon at my nap I take 100mg in hopes that it will get me through to bed time. (Well not just get me through but enjoy a bit of it too). I keep praying I don't build up a tolerance.

The feelings you describe about the increase in dose are just what I felt when I first started taking it. I also had a LOT of pressure on my ears.

Okay, I'm going to try and come back and post what I am proud of at the end of the day.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *chef34* 
Yeah, I guess there are some drinks and foods u can add to ur diet that definitely helps with fibromyalgia. Anyone have any suggestions as far as specific foods that u should eat daily?

I've gottan rid of gluten, don't eat much sugar (all though I have heard it said that if you take ALL sugar out it helps a bunch), I make sure to take a vitamin, vitamin D, and I'm also going to try fish oil soon.


----------



## *Amy* (Jun 16, 2004)

I had a doctor's appointment yesterday to talk about all of my bloodwork from my last appointment. Everything came back totally normal, which to me just supports my belief that I have fibro. My doctor said that he doesn't actually diagnose fibro (and my strong feeling is that he doesn't really believe in it as a condition) but that he would be happy to prescribe antidepressants.







I don't think that is the right course for me right now, so I am going to be seeing an alternative practictioner early next month; he specializes in fibro. And this might sound kind of out there, but I'm also going to see a medical intuitive/holistic healer next week! I have a lot of faith that these two people will be able to guide me on this healing journey.

I guess the "blessing in disguise" part of all of this is that I've figured out that there are quite a few lifestyle changes I need to make, such as making time every day to exercise, giving myself permission to not be perfect (or expecting myself to be), saying no to things that are too draining, etc. And...admitting to myself that I am actually *not* happy about some things. That is a hard one.

But I have hope right now, which is more than I have had in a long time!


----------



## Ruthla (Jun 2, 2004)

Hope is definitely a good thing Amy!

Right now I'm pretty wiped out from Passover prep- in spite of all my efforts to pace myself out and not overdo things on any given day, I just didn't get the help I needed from DD2 on Tuesday and I overworked myself on Wed. And now my kitchen is ready for Passover, all the non-Passover things are packed away, but nothing is really organized or set up- the kitchen is only semi-functional.









Last night I took an epsom salts bath with added lavendar and peppermint oils, and got to bed early (and slept late since nobody has school today!) but I still have a lot of work ahead of me today and I still hurt all over.


----------



## tireesix (Apr 27, 2006)

Can someone please help???

http://www.mothering.com/discussions...8#post11040678

This is partly to do with my Fibro but also my Ehler Danlos. I really need something, someone. I am so desperate today.


----------



## tireesix (Apr 27, 2006)

That sickness??? I get it, last year I was sick for 4 months, I lost several stone (I had enough to lose). I also get IBS but it all comes in waves. I can get the sickness sometimes just once a year, it can get to vomiting (last year was the worst I had had it). From what I can gather, IBS and Fibro, its all to do with crap muscles so its no surprise that it can affect the rest of the tract. Best thing I discovered was anti nausea tablets HOWEVER they don't always work but at least they can take thee edgee off. Last year nothing worked, I had to wait for it all to pass.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *tireesix* 
Can someone please help???

http://www.mothering.com/discussions...8#post11040678

This is partly to do with my Fibro but also my Ehler Danlos. I really need something, someone. I am so desperate today.

Tireesix- I read your thread, I don't know much about drugs and what is safe during pregnancy as I did not get Fibro until after I had my kiddos.

But I did want to reach out to you and send you a VERY gentle hug. I am sorry you are going through so much. This illness really sucks to say the least. I also have some of the other symptoms you mentioned, and they are very hard to live with.









I take tramadol for my pain. I have no idea if it is safe for pregnancy. I have been taking it for about 3 months and have found that it helps.

Feel free to PM me if you want to talk, here's hoping you get it all figured out soon....


----------



## supakitty (Mar 6, 2002)

I took Tramadol during pregnancy and I'm pretty sure you can take Neurontin (gabapentin) or Lyrica (pregbalin).

Gentle hugs to you.

-Laura


----------



## tireesix (Apr 27, 2006)

Gabapentin I react violently too (I was given it to try for vulval vestibulitis but was warned with my previous mental health history, there was a very good chance I would react that way). The other one I shall look up and suggest to my Doc.

Its just so ruddy stupid, I went to scratch an itch on my back while in town the otther day, not hard, not over a known tender point, kinda in between a rib, I didn't do it hard and I actually made myself jump and grunt in pain (people looked at me funny). It would seem that places that don't seem to hurt, really hurt on the slightest bit of pressure.

My hip joints are awful, just every where is awful.

I should join in here more often. I feel a bit rubbish because I only seem to come here when I need some info, I just rarely get much time at the comp these days.

So, thankyou, any other suggestions would be great!!!

And I was remembering what the Doc told me, IBS is kinda sluggish bowels, nausea and sickness is a sluggish stomach.


----------



## Blooming (Feb 16, 2006)

tireesix- It's okay you've got a lot on your plate, you can post whenever you want. I know I sometimes find myself doing the same thing these days. I'm trying so hard to figure out my life that I only wonder here for certain threads.

I wish the good health fairy would just come down and grant us all some time off or better a life time ticket for good health.









That's my good health fairy-not baby dust. Unless of course someone is looking.


----------



## bigeyes (Apr 5, 2007)

I switched from amitriptyline to nortriptyline because of the side effects. I'm still not delighted, but it's slightly better.

For a couple of weeks we tried triazolam instead for sleep, but my migraines came back with a vengeance, so I'm back on the nortriptyline.

There is _nothing_ they make that will help me sleep that doesn't drag me out during the day.







But I can't take migraine pills every day either, so there is no other solution, it seems. If I don't sleep well, I get a headache, so I have no choice but to take the lousy pills that make me draggy.


----------



## User101 (Mar 3, 2002)

This thread is closed pending moderator review. Please be patient until one of us can get to it, adn please don't start a new thread. This one will be returned.


----------



## User101 (Mar 3, 2002)

I am so, so sorry I forgot about this thread yesterday, and ask you all to please forgive me. Life just got in the way.

I've removed several posts but can't PM the people involved right now. I am going to please remind you that namecalling, personal attacks, and using FYT to criticize other threads are all against the UA. I will try to PM anyone who has a removed post this evening, and am asking that you please not continue to discuss these things on the thread (which would be a further UA Violation) but PM me with any questions or concerns.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
I switched from amitriptyline to nortriptyline because of the side effects. I'm still not delighted, but it's slightly better.

For a couple of weeks we tried triazolam instead for sleep, but my migraines came back with a vengeance, so I'm back on the nortriptyline.

There is _nothing_ they make that will help me sleep that doesn't drag me out during the day.







But I can't take migraine pills every day either, so there is no other solution, it seems. If I don't sleep well, I get a headache, so I have no choice but to take the lousy pills that make me draggy.

The fact that nortriptyline makes you sleepy proves how diffrently all out bodies react to medicine. I take it too and can't take it later then the afternoon or it keeps me up.

I hope they you find something that helps you. I get migraines too and they are less then fun.


----------



## umami_mommy (May 2, 2004)

thought i'd post this here.

the university of maryland medical center keeps a database on complementary medicine treatments.

there is a long list of alternative treatments here to try:

http://www.umm.edu/altmed/articles/f...gia-000061.htm


----------



## Blooming (Feb 16, 2006)

Hey mamas. Thought I'd check in and see how everyone was feeling.

I also have a question, do any of you have pins and needle like feeling in your feet? Since Saturday I have had a new pins and needles feeling in my feet that has been creeping up my legs. I can walk but it is really bothering me. I was supposed to see my doctor today but she cancled my appointment. (I have been expereincing other new symptoms to.)

Should I worry or is this just another fibro symptom?


----------



## Ruthla (Jun 2, 2004)

It sounds like a nerve problem Blooming. Do you have a chiropractor you can go to?

I'm feeling physically *OK* but mentally a mess. One of my cousins died on Friday night, the funeral's tomorrow, and I'm just feeling allover *blah.*. The weather today (rainy and yucky) isn't helping, and I'm feeling post-holiday letdown today as well (Passover ended last night and my kitchen is only halfway back to normal.) Plus I've been eating a lot of sugary junk since I found out about my cousin and my body isnt' reacting well to that (plus I'm always edgy and irritable the first day I go back to eating low-carb after being off plan.)

Then I woked up this morning to a vomity mess to clean up (DD2 got sick during the night) and overall it's just a yucky day today. Fortunately, DD hasn't gotten sick again- but it was quite a mess to wake up to and I still have vomity laundry to deal with (it was too much for one load.)


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
It sounds like a nerve problem Blooming. Do you have a chiropractor you can go to?

I'm feeling physically *OK* but mentally a mess. One of my cousins died on Friday night, the funeral's tomorrow, and I'm just feeling allover *blah.*. The weather today (rainy and yucky) isn't helping, and I'm feeling post-holiday letdown today as well (Passover ended last night and my kitchen is only halfway back to normal.) Plus I've been eating a lot of sugary junk since I found out about my cousin and my body isnt' reacting well to that (plus I'm always edgy and irritable the first day I go back to eating low-carb after being off plan.)

Then I woked up this morning to a vomity mess to clean up (DD2 got sick during the night) and overall it's just a yucky day today. Fortunately, DD hasn't gotten sick again- but it was quite a mess to wake up to and I still have vomity laundry to deal with (it was too much for one load.)

Oh Ruth, I am so sorry. I am sending you a hug. It can't be easy to be dealing with such a deep loss and then have everyday life stuff pile up on top of you. Sending you light and love...Jenn


----------



## sbgrace (Sep 22, 2004)

YummyYarnAddict,
I was doing a search on mothering for something unrelated to fibromyalgia but your posts on your CPK level elevations came up. I read a few about your other symptoms.

Fibromyalgia symptoms sometimes are actually caused by a metabolic condition. Unfortunately not all doctors (or even most doctors) are yet aware of it and the typical tests don't pick up on it. But elevated CPK was one of my son's signs. And some of your other symptoms outside of fibromyalgia are also consistent. So I wanted you to have the information.

I'm posting on this thread because mitochondrial and CPTII both can result in fibromyalgia symptoms so the information might apply to someone else here too. Both of those are relatively common metabolic conditions. Both can onset in adulthood. Mitochondrial progresses over time/as a person ages. My son finally has energy with treatment. There isn't a lot of information on mitochondrial in adults. But I know of moms whose kids were diagnosed and who disovered their fibromyalgia or chronic fatigue symptoms and other issues were actually mitochondrial disorder. And the treatment is the same for adults or children.

http://www.mothering.com/discussions...d.php?t=734501


----------



## supakitty (Mar 6, 2002)

How is everyone doing? Just checking in. I'm finding I need to increase my dosage of Lyrica to 50mg three times a day on days that I feel bad. It works well for the sunburn feeling hurty skin and the tinging feelings but MAN does it increase the appetite.

-Laura


----------



## *Amy* (Jun 16, 2004)

I'm doing OK. I can't remember if I already posted this, but I have figured out that dairy is a MAJOR factor in my pain. I also did a blood IGG test today, so I'm curious to see what other foods are possible "triggers." Here's my blog post about my recent doctor visit, if y'all are interested.

I found this book at my doctor's office and have read about half of it so far, and it is *very* interesting. It discusses yeast and harmful micro-organisms in detail, and it reminded me of some posts I've read here. It's pretty daunting, but I am thinking of making the transition to vegan/mostly raw in the coming months to see how I feel.

I was also going to ask what y'all do for birth control. I'm currently on the pill but my doctor has advised me to stop taking it. I didn't get to ask him to explain fully, so if any of you have insight, I would appreciate your feedback. I did have an IUD for 18 months and was relatively happy with it, but got it out to go back on the pill, and now I wish I hadn't had it taken out. I don't think there are many other viable options right now because DH and don't really want an "ooops" baby for the time being. So I'm definitely interested in your thoughts.


----------



## Ruthla (Jun 2, 2004)

I've been tired, and having trouble sleeping, and that of course leads to muscle pain. It's been really hard for me to sleep since my cousin's death 2 weeks ago, and that came on top of being super-busy at Passover time, when I knew I was overdoing things.


----------



## supakitty (Mar 6, 2002)

I got this magnet for my car, I love it!:

http://www.fmnetnews.com/cgi-bin/qui...FM08A&detail=1

PS. I especially love it being there when I park in the doctor's parking lot at work!


----------



## supakitty (Mar 6, 2002)

Me again, so I just paid $236.00 for 90 Lyrica tablets at the pharmacy - OUCH!


----------



## Blooming (Feb 16, 2006)

Hey mamas, I was just reading about the metals in tattoos over at TAO. I was wondering how many of us with Fibro have tattoos?

or

How many of us have been tested for metal toxicity? My doctor mentioned doing this at our next appointment.


----------



## Ruthla (Jun 2, 2004)

I don't have any tattoos, but I do have amalgram fillings. I'm not sure how to go about being tested for metal toxicity.

I'm just miserable lately. It feels so unfair. It seems like I've figured out my triggers, and if I could only avoid them I'd feel OK. But I haven't had wheat or dairy and I still feel like crap. Well, yesterday I did have some baked ziti (real cheese and rice pasta) because I already felt miserable and I figured it culdn't cause any MORE damage and I just felt like being self destructive and it was so tempting and tasty! But it was only about half a portion's worth and, as I said, I've been feeling like crap for weeks anyway. This week has been especially horrible.


----------



## Blooming (Feb 16, 2006)

Oh, Ruth I'm sorry you've been having such a hard time. I hope you get a break soon. This illness is so tricky, I too have found that I can be doing all the things I think are right but still find myself in a flare. Sending you a hug.


----------



## *Amy* (Jun 16, 2004)

Me too. I still haven't figured out all of my triggers though. But there are some days when I just WANT some chocolate pudding, so I eat it anyway.









I have two tattoos, but one is really tiny; maybe 2". My doctor mentioned toxicity testing too, if diet alone doesn't help resolve my issues. Have y'all heard of chelation? They do it at the clinic where I see my doctor, and I think it's to remove toxins and metals. He said it helps in more severe cases.


----------



## Ruthla (Jun 2, 2004)

I got some good sleep last night, and bowed out of an event today (got a friend to take DD to a homeschool event so I can take it easy) and I'm feeling a bit better today. Not 100%, but a LOT better than yesterday.

I've heard of chelation, but heard that it's dangerous if you still have mercury fillings in your teeth- it can pull metals out of your bloodstream, but if the mercury is still there, it just pulls more mercury from the fillings into the bloodstream and can actually result in increased, rather than decreased, levels. And having the fillings removed potentially releases more mercury than leaving them alone. So for the time being, I'm leaving the fillings alone and not considering chelation.


----------



## Blooming (Feb 16, 2006)

I'm glad your feeling better Ruth.

We had rain today and I am in such pain. I really want to be working on my book but all my body wants to do is lay on heating pads and watch a funny movie.

Laura- How are you feeling? Is the Lyrica helping?


----------



## Blooming (Feb 16, 2006)

Hey mamas-Just needed to vent and let some of this negative energy out. I'm straight out today, here a pain, there a pain, every where a pain, pain.

We were supposed to go to a wedding today for DH's boss and we weren't able to go. I'm bummed, he's bummed.

All I want to do is eat a bunch of Mcdonalds, drink milkshakes, cry, and watch Harry Potter movies.

On top of that I am at an age where I am watching all of my friends making that change from getting degrees, to getting jobs, buying houses, whatever.I had planned on being right there with them. They are all really busy and don't have time for their friend who is 30 but acts 80.
It sure is interesting how little by little they are disappearing.


----------



## krankedyann (May 28, 2005)

Quote:


Originally Posted by *Blooming* 
They are all really busy and don't have time for their friend who is 30 but acts 80.
It sure is interesting how little by little they are disappearing.










Hugs, mama. Same happened to me. All of my IRL friends disappeared when I got sick. I spent a year laying on a mattress on my living room floor, trying to keep myself and my two kids alive, with no help.


----------



## spiderdust (Oct 3, 2005)

Quote:


Originally Posted by *Blooming* 
Hey mamas, I was just reading about the metals in tattoos over at TAO. I was wondering how many of us with Fibro have tattoos?

Not only do I have tattoos, but I have piercings. Hmm...









Although I was sick before I got any of them. I don't recall any marked increase in illness since getting them, either.


----------



## *Amy* (Jun 16, 2004)

How's everyone doing this week? I was in Oregon visiting my parents for two weeks at the end of May and felt better during that time than I have in a long time! I don't know if it was the well water, or the fact that I was so relaxed, but now that I'm home again I'm having the same old issues.

So, do any of you make extra efforts to drink reverse-osmosis water or anything like that?


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by **Amy** 
How's everyone doing this week? I was in Oregon visiting my parents for two weeks at the end of May and felt better during that time than I have in a long time! I don't know if it was the well water, or the fact that I was so relaxed, but now that I'm home again I'm having the same old issues.

So, do any of you make extra efforts to drink reverse-osmosis water or anything like that?

My SIL just sent me something about the reverse-osmosis water. I'll be honest I didn't really read it. If someone trys it, I would be interested in hearing about their expereince.

It's interesting that you posted about being out in Oregon and feeling so much better. DH and I have thought about moving somewhere with milder weather. We're in New England and it often seems to go from below zero to 90 degrees (with humidity in a week) okay, I'm exagerating, but you know what I mean.

I have been in a lot of pain lately, I don't know if it is the humidity or what but it stinks. My home base seems to be my couch with my legs up on cushions.


----------



## *Amy* (Jun 16, 2004)

Oh, the humidity!! I hadn't even thought of that. There is no humidity in Oregon (I love it!!!) but it's gotten really bad here the past couple of weeks. I absolutely hate it.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *krankedyann* 
Hugs, mama. Same happened to me. All of my IRL friends disappeared when I got sick. I spent a year laying on a mattress on my living room floor, trying to keep myself and my two kids alive, with no help.

Somehow I never responded to you. I'm so sorry you lived through that, it sounds very hard. Hugs mama.

I wish I'd been around to help when I could.

Are things a bit better for you now?


----------



## Ruthla (Jun 2, 2004)

I'm tired but overall OK, It's been hot and gross here, but I spent a lot of time taking it easy in the air conditioning, so I'm OK.

The Jewish holiday of Shavuous just ended. I did eat a little dairy in the form of cheesecake crust with a touch of cheesecake touching it, but I never ate an entire piece and I completely avoided all gluten. So far, so good. I'm a little sore and achey but I don't feel like a full blown flare is coming on.

I can't beleive school is almost out and summer is just about here. The public pool opens in about a week and a half, and I need to get my swimsuit ready. I won't wear regular swimsuits because they're not modest enough, and the swimsuit I made myself last year is way too big on me.







I ordered more swimsuit fabric and it arrived yesterday, so I need to get sewing soon.


----------



## Blooming (Feb 16, 2006)

oh, swimming. A friend of mine has a pool. I can't wait to get into it. I love the feeling of being weightless, if only for a little while.


----------



## supakitty (Mar 6, 2002)

Bump!


----------



## Blooming (Feb 16, 2006)

How are you Laura?


----------



## *Amy* (Jun 16, 2004)

I was thinking about you all this morning. The past few days have been sucky, and I'm feeling really frustrated again. First, I hate having to think about everything I eat (does it have dairy, yeast, or sugar??! Almost everything does!), I hate not being able to eat cheese, and I hate knowing I still have triggers and not knowing what they are.









This morning I felt so ill, so tired and weak. I just wish I could figure out WHAT is the underlying issue. I tried drinking spring water (thinking the well water at my parents' might have been one thing that helped while I was in Oregon) but didn't notice any difference. So gah. I'm just so damn sick of this.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by **Amy** 
I was thinking about you all this morning. The past few days have been sucky, and I'm feeling really frustrated again. First, I hate having to think about everything I eat (does it have dairy, yeast, or sugar??! Almost everything does!), I hate not being able to eat cheese, and I hate knowing I still have triggers and not knowing what they are.









This morning I felt so ill, so tired and weak. I just wish I could figure out WHAT is the underlying issue. I tried drinking spring water (thinking the well water at my parents' might have been one thing that helped while I was in Oregon) but didn't notice any difference. So gah. I'm just so damn sick of this.

Amy I'm sorry your not feeling well. I hate the Flares, I've been having some myself off and on these days. Today is on.

I really wonder for you too. Are things a lot less stressful out in oregon or do you think it could be the weather? It's so hard, I find that just when I think I've found what is triggering something else pops up or I'm just hurting and I don't know why.

Hugs...


----------



## supakitty (Mar 6, 2002)

I was just thinking of everyone here today and wanting to check in. I dropped off my daughter at camp this AM and slept from 9am - 2pm solid and felt guilty about it the entire time (like I should be doing something more productive?). I am sill taking Lyrica 50mg twice a day and I feel much better on average that I used to. I have baby fever again very badly but it is tempered by remembering what pregnancy was like with fibro - ouch! I'm taking 3 weeks off to go to Maine with my daughter and see my family at our summer house, I can't wait to escape the heat here in the Southwest - friggen 107 degrees while sitting in the car!

In May I passed my due date and it was very sad for me. I wrote about it:

Room 637

Twice I was hospitalized in this same room, stared at its four walls, prayed for my unborn child and myself. Upon discharge the second time I remarked, "Next time I am here in this room it will be with my new baby." My hopeful words were spoken but would never come to pass. - A haze of sadness in December, baby is lost, passed in the ER six stories below Room 637 - Today, May 25, 2008, my due date. I make my rounds in the hospital looking in on new moms and their precious bundles. I enter Room 637 as a caretaker, not a patient. She holds her child and glows in the light of newborn love - An aching sadness washes over me yet my smile does does not betray these feelings. I wish the best for her. Yet how desperately I long to be her, holding my newborn baby with my family hovering all around me. How I long for you on this day, May 25, 2008, the day you should have been born.

Blergh, who knows what life brings, eh?

Thinking of all my fibromyalgia mamas and wishing lots of "good days"

-Laura


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *supakitty* 
I was just thinking of everyone here today and wanting to check in. I dropped off my daughter at camp this AM and slept from 9am - 2pm solid and felt guilty about it the entire time (like I should be doing something more productive?). I am sill taking Lyrica 50mg twice a day and I feel much better on average that I used to. I have baby fever again very badly but it is tempered by remembering what pregnancy was like with fibro - ouch! I'm taking 3 weeks off to go to Maine with my daughter and see my family at our summer house, I can't wait to escape the heat here in the Southwest - friggen 107 degrees while sitting in the car!

In May I passed my due date and it was very sad for me. I wrote about it:

Room 637

Twice I was hospitalized in this same room, stared at its four walls, prayed for my unborn child and myself. Upon discharge the second time I remarked, "Next time I am here in this room it will be with my new baby." My hopeful words were spoken but would never come to pass. - A haze of sadness in December, baby is lost, passed in the ER six stories below Room 637 - Today, May 25, 2008, my due date. I make my rounds in the hospital looking in on new moms and their precious bundles. I enter Room 637 as a caretaker, not a patient. She holds her child and glows in the light of newborn love - An aching sadness washes over me yet my smile does does not betray these feelings. I wish the best for her. Yet how desperately I long to be her, holding my newborn baby with my family hovering all around me. How I long for you on this day, May 25, 2008, the day you should have been born.

Blergh, who knows what life brings, eh?

Thinking of all my fibromyalgia mamas and wishing lots of "good days"

-Laura









, Laura. I will light a candle for you tonight. You are in my thoughts.

I am glad you got some sleep today and that the lyrica is helping.
Hoping you have lots of good days too...Jenn


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by **Amy** 
I was thinking about you all this morning. The past few days have been sucky, and I'm feeling really frustrated again. First, I hate having to think about everything I eat (does it have dairy, yeast, or sugar??! Almost everything does!), I hate not being able to eat cheese, and I hate knowing I still have triggers and not knowing what they are.









This morning I felt so ill, so tired and weak. I just wish I could figure out WHAT is the underlying issue. I tried drinking spring water (thinking the well water at my parents' might have been one thing that helped while I was in Oregon) but didn't notice any difference. So gah. I'm just so damn sick of this.









Amy. After a while you get used to food allergies. I don't really "think about it" anymore- generally I prepare my own food from home and plan on not eating anything somebody else prepared, and am pleasantly surprised to find a "safe" food elsewhere.

The last time I met up with an old friend in a restaurant, I had a cup of coffee while he had a bagel, and even though I had to eat before heading out, I still had the chance to socialize over the table.

I'm not so sure that *all* fibro triggers can be identified. I know for certain that eating dairy or wheat will send me into a flare, but I can't guarantee that "eating clean" will prevent one. I also need to avoid chemical exposure, get enough sleep, get enough nutrition, get just as much exercise as I can tolerate, and "sleep off" any "mini flares" when they come so they don't turn into major flares.

Quote:


Originally Posted by *supakitty* 
In May I passed my due date and it was very sad for me.









I'm so sorry for your loss.


----------



## Ruthla (Jun 2, 2004)

Argh. I feel like I'm in another flare. Or, at the very least, I needed extra sleep the last 3 days and my shoulders are incredibly sore today.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
Argh. I feel like I'm in another flare. Or, at the very least, I needed extra sleep the last 3 days and my shoulders are incredibly sore today.

Me too. I'm off to nap and hope to wake up feeling better.


----------



## Ruthla (Jun 2, 2004)

I think chlorine may be triggering flares.

I felt sick the whole 2 weeks my kids had daily swimming lessons. Then I slowly started feeling a little bit better, though I felt a bit guilty about not getting them to the pool at all. Yesterday I took them to the pool again, went in the water for about half an hour (maybe less). Then I started to get the feeling that the chlorine was poisoning me, so I showered at the pool, to get that chemical ickiness off of me ASAP.

I'm in a lot of pain today.

I'm not 100% certain it was from the chlorine, as it was also a very busy, stressful day where I was running around a lot, afater DD's tennis lesson I realized that DS and my mom went home with my car keys (DS had taken them to get his swimsuit out of the car then forgot to return them- later we discovered he put them in mom's pool bag rather than mine) and I spent half an hour wandering around the park (heavy pool bag on my shoulder) looking for the keys before my Dad came to return them to me. Then I was too stressed to sleep so I got to bed to late and still got up early this morning to take DS to camp.

So the chlorine might have just been a coincidence, I'm not sure. I thought I was heading off trouble by showering and washing my hair at the pool.


----------



## bigeyes (Apr 5, 2007)

That's a tough one. I think chlorine is baaaaad for you, but swimming is a safe exercise for fibros.









Do you have a lake or anything like that nearby?


----------



## jenisttc08 (Apr 30, 2008)

I am so glad I found this thread. I'm not a mom yet, but the fibro's the main thing keeping me from TTC this summer like DH and I planned.









Anyway, hi. I'm Jen, age 26. The fibro was diagnosed this past November, after a flurry of blood tests and a long time with symptoms. I noticed a few pages back that someone else had elevated CPK? That was also elevated in that huge bloodwork panel. Thyroid was smack dab in the middle of normal range, though - my doctor had also suspected hypothyroid.

I have a few questions, too. Because my insurance company wouldn't cover Lyrica without a huge fight







I'm taking 1500mg Neurontin - 300 in the morning, 300 in the evening, and 900 at night. It's doing a great job with the pain (along with Ultram and Robaxin for the bad days) but the problem? All of my doctors agree that my fibro drugs aren't safe during pregnancy. What have you fibro mamas done to handle it? Should I push for something else? I'm also doing physical therapy, even though the PT has gotten close to pushing me into flares.









Thanks in advance, and


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *jenisttc08* 
I am so glad I found this thread. I'm not a mom yet, but the fibro's the main thing keeping me from TTC this summer like DH and I planned.









Anyway, hi. I'm Jen, age 26. The fibro was diagnosed this past November, after a flurry of blood tests and a long time with symptoms. I noticed a few pages back that someone else had elevated CPK? That was also elevated in that huge bloodwork panel. Thyroid was smack dab in the middle of normal range, though - my doctor had also suspected hypothyroid.

I have a few questions, too. Because my insurance company wouldn't cover Lyrica without a huge fight







I'm taking 1500mg Neurontin - 300 in the morning, 300 in the evening, and 900 at night. It's doing a great job with the pain (along with Ultram and Robaxin for the bad days) but the problem? All of my doctors agree that my fibro drugs aren't safe during pregnancy. What have you fibro mamas done to handle it? Should I push for something else? I'm also doing physical therapy, even though the PT has gotten close to pushing me into flares.









Thanks in advance, and









I wanted to say I'm glad you found us. I don't really have any answers to your questions as I wasn't diagnosed with Fibro until after I had both of my children.

I do understand where you are coming from with the physical therapy. I did water therapy for a long time and while it helped me when I was in the water, it often would tire me out to the point of going into a flare.

After a while the PT gave me an ultimatum either I start showing progress or she won't continue to treat.







: I didn't go back and have been afraid to try PT since.

I hope someone is able to answer your questions regarding the meds and pregnancy.


----------



## Ruthla (Jun 2, 2004)

No lakes near me, but we have the ocean on the South Shore and the Long Island Sound on the North Shore- but that means a longer drive (more sitting in the car plus more gas money), dealing with crowds, possible long walks from the parking lot to the water (especially by the Ocean) and paying to park the car (I've already paid for the summer at the local pool.) The longer drive also means having to pack food for the entire day instead of being able to come home for meals, and just in general be better able to pace myself. Plus the kids don't really like the beach.

Jen- I wasn't diagnosed with fibro until after DS was over a year old, and I didn't start experimenting with meds until he was weaned. At the time, fatigue was a much bigger problem for me than pain, and all the meds I tried made me even more tired.


----------



## supakitty (Mar 6, 2002)

Quote:


Originally Posted by *jenisttc08* 
I am so glad I found this thread. I'm not a mom yet, but the fibro's the main thing keeping me from TTC this summer like DH and I planned.









Anyway, hi. I'm Jen, age 26. The fibro was diagnosed this past November, after a flurry of blood tests and a long time with symptoms. I noticed a few pages back that someone else had elevated CPK? That was also elevated in that huge bloodwork panel. Thyroid was smack dab in the middle of normal range, though - my doctor had also suspected hypothyroid.

I have a few questions, too. Because my insurance company wouldn't cover Lyrica without a huge fight







I'm taking 1500mg Neurontin - 300 in the morning, 300 in the evening, and 900 at night. It's doing a great job with the pain (along with Ultram and Robaxin for the bad days) but the problem? All of my doctors agree that my fibro drugs aren't safe during pregnancy. What have you fibro mamas done to handle it? Should I push for something else? I'm also doing physical therapy, even though the PT has gotten close to pushing me into flares.









Thanks in advance, and









Hi Jen, Welcome (?) to our group, I mean truly I know no one _wants_ to be in this group but luckily we have a great bunch of women who are super knowledgeable and also know the right things to say when you're having a bad day.

I was pregnant when the FMS pain really set in and it was the worst pain of my life. I eventually lost the baby and of course the pain has hung around for the past 7 months as a result. I am taking Lyrica 50mg twice a day and while I know that it may have potential for harm during pregnancy (I am a practicing OB/GYN PA) I will use it nonetheless. I have no choice or at least it is the choice I will make.

I have read both good and bad accounts of pregnancy in FMS. Mine was an example of it being pretty awful but there's no reason to think this will happen to you. You won't know until you try. Also, you can take tramadol during pregnancy and it helps a lot with FMS pain.

-Laura


----------



## Ruthla (Jun 2, 2004)

I personally have found that the prescription pain meds help, but far less than some other things I've been doing to help myself- all of which would be perfectly safe to use during pregnancy.

1) Identify triggers and avoid them. Mostly this is dietary stuff- it can take a lot of trial and error but I've identified wheat and dairy as foods that can trigger flares. Getting enough sleep is another huge one.

2) Topical pain meds- the kind you rub into your skin. Also hot/warm epsom salts baths can really ease pain. Super hot baths aren't good while pg, but warm baths are still fine, and epsom salts are perfectly safe to soak in.

3) Nutritional supplements, specifically malic acid (which I'm currently getting from apple cider vinegar) and magnesium.


----------



## Blooming (Feb 16, 2006)

mamas, I need a boost. I woke up with my legs hurting so bad I couldn't put weight on them. I tried to push through it. Even making a park play date for my kids. Then I got in the shower and couldn't get out with out DH's help. Now I'm hurting really badly and the kids are bummed. I'm trying not to beat myself up.

I just need to except my limitations and love myself no matter what. Right?

I'm trying not to be sad for them or myself. sigh.


----------



## supakitty (Mar 6, 2002)

One minute at a time. Be gentle with yourself and remember this won't last forever.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
mamas, I need a boost. I woke up with my legs hurting so bad I couldn't put weight on them. I tried to push through it. Even making a park play date for my kids. Then I got in the shower and couldn't get out with out DH's help. Now I'm hurting really badly and the kids are bummed. I'm trying not to beat myself up.

I just need to except my limitations and love myself no matter what. Right?

I'm trying not to be sad for them or myself. sigh.


----------



## *Amy* (Jun 16, 2004)

Blooming







That is so hard. Don't beat yourself up about it, though. Just allow yourself to get some rest and take care of yourself today.

Hi Jen, and welcome to the group. In retrospect, I'm sure I had fibro while I was pregnant with DD (now 2 1/2), which caused immense fatigue/low energy. The pain wasn't terrible for me until after she was born, though. I'm currently TTC, so yay for that, but I'm also not sure what to expect with another pregnancy. I'm just hoping for the best.

I totally agree with Ruthla about finding your triggers, if possible. I still am not 100% sure of mine (I've been eating dairy again - just cheese - for the past week or so and have been totally fine, so that is very strange to me) and getting good sleep and supplements.

Something to think about too is that some triggers can be worse after the baby is born rather than during pregnancy, like lack of sleep. DD's first year was probably the hardest of my life, physically, because of how sleep deprived I was. I suppose medication might not be as much of an issue at that point, although if you plan to breastfeed it might be.


----------



## LionessMom (Mar 12, 2008)

subbing.

i have had fibro for awhile. it is so bad that i am disabled. i found that meds make me worse. i have stopped all meds, quit smoking and no longer drink at all. the only thing i take besides nexxium is my prenatal vitamin. i have been taking it since i got pregnant and DD will be 15 mo. i find i am worse on the days i dont take it. the regular vitamins didnt help this much. it must be the added magnesium or something. i see a chiropractor twice a month and that helps the most. i definitely reccomend it. i also try to avoid processed sugar (pastries) and dairy (choc milk). those two things are my addiction.

it was nice to find this thread. my mom also has fibro and we support each other but everybody else thinks it is in my head. DH tries real hard to understand and has gotten better the longer we are together. it has gotten to the point where i will clean if i feel like it. if it isnt clean and if it bugs him that bad he will clean it himself. everybody thinks i am just trying to live off of the gov't. that really pisses me off because i have a lot of real pain. i am always sad because i cant do all the things "normal" people can do. like work at a job and take care of the house and kids. i dont work and barley take care of the house and kids.
my kids do a good job of helping around the house and remembering to not pull on me or hang on me but i worry they are not getting enough "touch time".


----------



## Ruthla (Jun 2, 2004)

I don't worry about the kids getting enough "touch time" as I'm able to snuggle, or sit on the couch and hold them, etc, without too much difficulty. I worry that they're missing out because I can't take them to all the activities they want to go to- especially in the summer when it's just too hot for me to comfortably be outside, even if I'm able to sit in one spot while they run and play.


----------



## Indigo73 (Aug 2, 2002)

Haven't posted much, but I do follow this thread.

Currently working on removing gluten and dairy from my diet. Not fun, but interesting.

Off pain meds again and going to stay off. Had my third ulcer. No more.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Indigo73* 
Haven't posted much, but I do follow this thread.

Currently working on removing gluten and dairy from my diet. Not fun, but interesting.

Off pain meds again and going to stay off. Had my third ulcer. No more.


Welcome, Indigo and LionessMom

Indigo, did the pain meds give you the ulcers?

I hear all of you on wanting to do more with your kids or have the job you wanted. I try not to think about these things but then someone calls and asks me to be their doula or the kids miss out on something and it hits me again.

Today was horrid. We had plans to take the kids to the movies but when I woke up I felt as if my whole body had been on nails the night before.
Still feeling it. I get so snappy with the kids and dh. Fibro sucks no doubt about it. DS is sitting next to me singing some made up song and I just want him to stop! Even my ears hurt.

LionessMom- I'm sorry you have people in your life who think you just want to live off the goverment. Those people really have no clue what it is like to live with this.


----------



## Ruthla (Jun 2, 2004)

Being off gluten and dairy has been a huge help for me.

Yesterday and Monday I was feeling really depressed- I finally realized I'd had about a tablespoonful of half n half on Sunday, since I bought coffee on the road instead of brewing it at home and adding coconut milk. I think that may be the culprit.


----------



## Indigo73 (Aug 2, 2002)

Yes the pain meds are the culprits, we've tried quite a few and I may be on Prevacid or the like for the rest of my life. Ick.

I've had a few friends have success with removing dairy and gluten, so my medical team and I thought we'd give it a try.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Indigo73* 
Yes the pain meds are the culprits, we've tried quite a few and I may be on Prevacid or the like for the rest of my life. Ick.

I've had a few friends have success with removing dairy and gluten, so my medical team and I thought we'd give it a try.

Between what I hear from both you and Ruth it seems I should try to go dairy free too. The only problem is that I have issues with my weight. I'm currently about or below 100lbs. If I cut out dairy I'll be in real trouble. (I'm already gluten free.)

I'm sorry you have issues with your stomach on top of everything else.


----------



## jenisttc08 (Apr 30, 2008)

Today I need a boost. I started a great new job, but three days in and I'm flaring full-force. I'm freaking out and DH is, too. The freakout's making the allover pain worse.

And to make things bad on top? Yesterday? Our wedding anniversary. And guess who had to cancel plans due to the fibro?







:


----------



## Blooming (Feb 16, 2006)

:
I hope you feel better soon, it must be very hard starting a new job right now.

I'm sorry about your annniversary plans, sometime I wish the Fibro could had least give us a calander of when it intends to be a PIA so that we could make some sort of plans.

Quote:


Originally Posted by *jenisttc08* 
Today I need a boost. I started a great new job, but three days in and I'm flaring full-force. I'm freaking out and DH is, too. The freakout's making the allover pain worse.

And to make things bad on top? Yesterday? Our wedding anniversary. And guess who had to cancel plans due to the fibro?







:


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Blooming* 
Between what I hear from both you and Ruth it seems I should try to go dairy free too. The only problem is that I have issues with my weight. I'm currently about or below 100lbs. If I cut out dairy I'll be in real trouble. (I'm already gluten free.)

OK, try to focus on what you CAN eat safely. Can you handle nuts? Fruits? Fatty meats? Thinking of my "weight loss advice" in reverse, make sure you get enough carbs in, along with enough total calories. Even in a Paleo diet (removing all grains, white potatoes, dairy, and beans) people fail to lose weight if they eat too many nuts and fruits- so you can certainly cut out problem foods without wasting away.

It's also possible that food intolerances are interfering with gaining and maintaining weight- so it's possible that cutting out dairy will help your body stablize at a healthy weight.

Quote:


Originally Posted by *jenisttc08* 
Today I need a boost. I started a great new job, but three days in and I'm flaring full-force. I'm freaking out and DH is, too. The freakout's making the allover pain worse.

And to make things bad on top? Yesterday? Our wedding anniversary. And guess who had to cancel plans due to the fibro?







:









I can't imagine having to work- thank G-d for SSI!

I'm sorry you had to cancell (postpone?) your anniversary celebration. Happy Anniversary anyway!


----------



## Phoenix~Mama (Dec 24, 2007)

I haven't posted here in forever... internet time limited and such and have basically only been posting in my DDC, and Blended.

But I'm TIRED. lol My midwife just looks at me all sympathetic saying I'm so young to have fibro... Gee, thanks for stating the obvious.









Like she will ask how the pregnancy is going, if I have swelling and such... well, I do... but I doubt it's from the pregnancy... my feet/legs always swell in humid weather with fibro. But she had to squeeze my ankle anyway and I almost kicked her.









How do you all cope with the hot weather?


----------



## *Amy* (Jun 16, 2004)

Quote:


Originally Posted by *JSMa* 
How do you all cope with the hot weather?

Stay inside as much as possible. I hate the heat. HATE. My BFF was joking with me the other day and said I'm the only person she knows who has SAD in the summer, when most people are happy.







Luckily DD doesn't like the heat either, so she doesn't mind not being outside most of the time.


----------



## LionessMom (Mar 12, 2008)

i stay inside a lot. i have my central air on which is a must when you live in a trailer. these things are like ovens!
it is hard for me to snuggle with the kids. they always squirm and poke me, pull my hair, or yell in my ear. i try to give them lots of brief hugs and a couple of long ones during the day. i usually instigate it when i am feeling good. then they want to start jumping on me and i have to give them the reminder. "you cant jump on me honey i will get hurt, lets do ... instead"
last night was horrible. it was 90 in the shade and humid too. we had to go to my DSs boy scout family night. i already didnt feel good, then we had to walk a mile to get to his camp. then we ate dinner. i had the baby and trying to eat. when DH was done i asked him if he could watch DD so i could finish. he said yes then turned his back on her to mess with a tent! i actually said the word "[email protected]@er". in front of boy scouts. i feel so bad







. i was mad though. all i wanted to do was eat but DD was done and wanted to walk around. it was too hot to be in the sling for very long. all i wanted to do was eat my watermelon without DD screaming because i didnt want t o let her down. and then we couldnt even stay for the parade because we had to come back and get the DSDs from the other parents house by a certain time.

sorry that got so long. i hate fibro. i feel like i am always grumpy. the good times are real good but they are so few and far between. sigh. i hope tomorrow is better. i would like to take the kids swimming.


----------



## Phoenix~Mama (Dec 24, 2007)

That is kind of funny Amy. Never thought of it that way... I do have SAD in winter though. It's a different pain in the cold than mugginess.








s to Lioness I hope it is a better day.

I do stay inside as much as possible... but we don't have air throughout the house... it does stay relatively cool in the living room with the fan on, surprisingly....


----------



## Ruthla (Jun 2, 2004)

I'm just sick and tired of being sick and tired. My shouders have been burning (that awful burning feeling in the muscles) for several days, and it feels like I haven't felt really good in weeks. Is summertime itself a trigger for me?

Friday afternoon we lost power for a few hours, so I was schlepping food from my apt down to the backyard BBQ and back up again. Then we got power back about half an hour before Shabbos, and I turned the AC back on in my bedroom but in the mad rush didn't realize it was set to fan, not ac. So it was hot and muggy in my bedroom and I didn't sleep very well.

Nah, it's not *just* the heat. It's that things are hectic here in the summertime, with expectations of things I'm supposed to be doing with the kids (especially DS) and I can't just veg out in air conditioning all day like I can do during the school year.


----------



## Phoenix~Mama (Dec 24, 2007)

s Ruthla

Yeah summertime is pretty horrid.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *JSMa* 







s Ruthla

Yeah summertime is pretty horrid.









Yes it is, yesterday I wanted to just come and post the bang my head aganist the wall smilie.

I hope everyone is feeling well today.


----------



## Indigo73 (Aug 2, 2002)

Yeah, summer is not my favorite time of the year. I'd rather be cold than hot any day. But what is worse is that a/c causes me to be in pain. Central air to window units. It's worse when air is blowing directly on me (even fans can hurt). Yuck.

I can't wait until October. I can't believe I am going to say this, but I wish it would rain. It's been almost 3 weeks. I am willing to take on the extra ouchies for some relief from the dust and humidity.


----------



## krankedyann (May 28, 2005)

Has anyone tried Sequenced Amino Acid Modulation injections? It's relieved the majority of my fibro symptoms. Of course, I'm not officially diagnosed as having fibro since I avoid doctors, but I was wondering if anyone else has tried this.


----------



## jenisttc08 (Apr 30, 2008)

I've never heard of that, krankedyann. Do you have a link with more info?

And UGH. This low-pressure system in New England is absolutely killing me. I'm hurting and the weather makes it worse. Rain, rain, GO AWAY. D:


----------



## Indigo73 (Aug 2, 2002)

Send it south, we need the rain. I keep hearing about the rain in Boston and then it goes out to sea instead of hitting us here on the sound.


----------



## Ruthla (Jun 2, 2004)

I actually had a pain free day yesterday. Ugh, not today.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *Ruthla* 
I actually had a pain free day yesterday. Ugh, not today.









I'm sorry to hear that Ruth. About today I mean. I'm in the mist of a flare that will-not-let-go. Every night I think tomorrow will be better, but then no.

I must have PMS on top of that because I've been crying about everything all day.

I was wondering if we could all share ideas/things we do with our kids when we are down for the count.
I'll start:
-Movie night and snuggles
-reading and snuggles
-looking at pictures on my laptop with the kids
-games like I spy

That's all I really have for now...


----------



## krankedyann (May 28, 2005)

Quote:


Originally Posted by *jenisttc08* 
I've never heard of that, krankedyann. Do you have a link with more info?

I don't. I haven't been able to find anything about it online, which is why I'm asking here. It's made a major change in my ability to function. My doctor did say that it's experimental, but that he's seen a complete resolution of symptoms in quite a few auto-immune patients with it.


----------



## LionessMom (Mar 12, 2008)

i would be interested in knowing more too!









today was awful for me. i have excema in my ears and i scratched. i mean i had my pointer finger in there it itched so bad. needless to say i hurt myself. and since i am prone to infection..... i got a real bad mioddle ear infection. i am on augmentin plus a drop that goes directly in the ear. the side of my face is swollen and i cant open my mouth or close my mouth far enough to eat. i have been living on carnation instant breakfast and water for the last 2 days.i have such serious pain i had to get hydrocodone for it at the ER sun night. and the had to put a wick in my ear canal because it had swollen up so bad the drops couldnt get in there. i am so miserable and i cant hear out of that ear right now. and the heat and humidity make it worse. i feel like a little old woman sometimes. esp with the hard of hearing thing. lol.
after reading this you would think all i do is whine. but all of you are the only ones who really know how bothered i am. i just cant seem to tell my DH about it anymore except when it is really bad. i feel like i am wearing him out with it. i know he doesnt feel that way, but sometimes i get tired of listening to myself too. need to talk optimistically instead of dwelling on the yuckies, huh? it makes me feel better to know that i am not the only one who is like this.
by the way, i think it is genetic. my mother has been diagnosed, i have been diagnosed, and my long lost sister that my mom gave up for adoption 40 years ago and found again, shows signs of it too and i am encouraging her to get diagnosed.


----------



## Phoenix~Mama (Dec 24, 2007)

I pretty much do movies when I'm down too. *nods*

It's raining and muggy here.







Which means my legs are KILLING me. Ugh!


----------



## Ruthla (Jun 2, 2004)

It was muggy this morning and now we have a thunderstorm. I'm also on day 2 of my cycle, which explains some of my extra discomfort in the past few days.

I missed my Torah study class this morning- when my alarm went off at 7:30AM my shoulders just hurt SO MUCH and I knew I'd be in awful pain all day if I didn't get back to sleep. So I turned off the alarm and slept another 2 hours. Now I'm feeling a bit under the weather (quite literally, seeing how my body responds to low pressure systems) and have mild menstrual cramps, but I'm not in excruciating pain and I don't feel like I'm in a flare. I doubt I could have said the same thing if I'd forced myself out of bed this morning.

I just feel a little bad because this week one of the women was sponsoring it in honor of her mother's yartzeit (anniversary of her death) and they were serving breakfast before and after the class. Irina had emailed me a few times about getting safe (gluten free, dairy free) foods for me to have there, and then I didn't make it. I did email her this morning after I woke up and explained that I wasn't feeling well today.


----------



## Blooming (Feb 16, 2006)

:

I'm having a new symptom (For me). I've been having uncontrollable ticking and jolting in my muscles.

It started last night (I have been in the middle of a flare).

So is this Fibro or do I need to worry that it's something else?


----------



## *Amy* (Jun 16, 2004)

Can you explain the ticking?


----------



## LionessMom (Mar 12, 2008)

i think it know what you mean by ticking. i used to have a facial tic. sometimes other muscles will do it too. it is like a twitch right?


----------



## krankedyann (May 28, 2005)

For me, ticking means I need more magnesium. But since I don't absorb it well from supplements, I get it from Epsom salt baths instead.


----------



## Blooming (Feb 16, 2006)

The ticking is like when your trying to fall asleep and your body will suddenly jolts. Only it is happening during the day. For example my arm went through a little spurt today where it kept jolting suddenly. You can actually see it happening. My neck was also randomly ticking to the left.
I have no control over it.

I actually have some Epsome salts perhaps I will try to take a bunch of baths.

I would drink some nettles but I don't know if they would interact with all the medicine I'm taking.


----------



## Ruthla (Jun 2, 2004)

I've had that kind of thing at night, and taking more magnesium definitely helps.


----------



## *Amy* (Jun 16, 2004)

Oh wow. I am sorry you are having such a hard time right now.


----------



## Richie'sMama (Dec 4, 2001)

Has anyone tried the NeuroSensory Center to treat your fibromyalgia? They have locations all around the US and just opened one near me. They do some kind of non-invasive testing of your vision, hearing and balance and then treat your fibro based on those results using anti-virals, anti-fungals, supps. and chelation. They work with migraines and autistic spectrum disorders, too. And they take insurance. I'm thinking it's worth a try, especially cause they're so close to me.

Any advice?


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *Richie'sMama* 
Has anyone tried the NeuroSensory Center to treat your fibromyalgia? They have locations all around the US and just opened one near me. They do some kind of non-invasive testing of your vision, hearing and balance and then treat your fibro based on those results using anti-virals, anti-fungals, supps. and chelation. They work with migraines and autistic spectrum disorders, too. And they take insurance. I'm thinking it's worth a try, especially cause they're so close to me.

Any advice?

I've never heard of them. Frankly I'd be nervous about being put on a lot of antivirals or antifungals when in general I tolerate medications poorly.


----------



## Phoenix~Mama (Dec 24, 2007)

I am so thrilled!!







: I just realized today that I now have been working full time for a whole year! This is the first full year I have been able to work full time since I got diagnosed in 2002!! It has been a long road, but I am so proud!


----------



## jenisttc08 (Apr 30, 2008)

Way to go, Jenifer!







:

Um...I've started a new job? And I've now done two weeks full time?


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *JSMa* 
I am so thrilled!!







: I just realized today that I now have been working full time for a whole year! This is the first full year I have been able to work full time since I got diagnosed in 2002!! It has been a long road, but I am so proud!

Congrats!

I've been feeling OK for two whole days.


----------



## LionessMom (Mar 12, 2008)

I looked this up online and loved what i saw. it sounds great. i want to check it out but the closest one to me is 500 miles away. i would go to at least see what they wanted to do and why. like ruthla i would be hesitant to put some more chemicals in me because i do better without but the promise of a better life, maybe even a pain free life is hard to pass up. when i told my DH about the place he wanted to try until i told him how far away they were. if we could swing the gas we would totaly do it. if you do go and they do tell you something you should tell us all about it. maybe we could get some inspiration for our own treatment.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *LionessMom* 
I looked this up online and loved what i saw. it sounds great. i want to check it out but the closest one to me is 500 miles away. i would go to at least see what they wanted to do and why. like ruthla i would be hesitant to put some more chemicals in me because i do better without but the promise of a better life, maybe even a pain free life is hard to pass up. when i told my DH about the place he wanted to try until i told him how far away they were. if we could swing the gas we would totaly do it. if you do go and they do tell you something you should tell us all about it. maybe we could get some inspiration for our own treatment.

Do you mind posting the link you found?
Thanks!


----------



## Ruthla (Jun 2, 2004)

After feeling somewhat OKish for a few days, I was in absolute misery on Friday.

I think maybe I don't tolerate the gluten-free oats after all. I made a fresh batch of oat challah (which means I can avoid feeding wheat challah to my family or risking me touching any of the wheat crumbs) and nibbled a small bit when they first came out of the oven. By the evening, when it was time to set the table, I was unable to get the dishes down from the cabinet, my arms were so bad. Then later in the evening (after consuming a rather large portion of challah) I was just in awful pain.

Yesterday I skipped the challah altogether and felt a bit better physically, but I was still very very tired and unfocused and depressed. I know dairy makes me depressed but I haven't had dairy in a while- could the oats be doing it?

Looking back, I never felt good while testing oats. Passover I thought the problem was overexertion before the holiday, and then my cousin's death threw me for a loop at the end of the holday. I've been using oat challah (instead of rice challah) for the past month, and feeling pretty yucky the whole time`- was it from the chlorine exposure? Maybe now it's from the paint fumes in the basement even though Ive been avoiding the pool? The heat itself? Or the oats I've been eating at least once a week?

I just know I'm depressed and feel completely overwhelmed and unprepared for all the stuff I should be doing.


----------



## Blooming (Feb 16, 2006)

Oh Ruth- I am so sorry. I hope that the oats clear out of your system soon so you feel better soon.

I know this isn't actually medical fact but when I first went gluten free, I was talking to the man stocking the gluten free shelves, he has celiacs too. He knew since he was an infant because his father had it so his mother had him tested asap. He told me that once I cleaned gluten out of my system , I would start to react to them. He said that in addition to physical systems he will suffer from extreme melancholy.

I have never tried gluten free oats. I have read people debating it and just never got around to it. I have thought about it though, as it would make life a bit easier.

Sending feel better soon vives.....


----------



## LionessMom (Mar 12, 2008)

Quote:


Originally Posted by *Blooming* 
Do you mind posting the link you found?
Thanks!

neurosensory centers of america


----------



## LionessMom (Mar 12, 2008)

Dh and I just got done fighting. once again he was bitching about me behind my back. he does it every morning when we are asleep. he thinks we cant hear him. hello! we live in a trailer and you are yelling! instead of felling hurt again all day (which totally saps my energy) i got up and said something. i am sick of him bitching every morning. it is why i dont let him take care of the kids in the morning even though it kills me. i couldnt do that to them anymore.

my biggest peeve is that he calls me "lazy". i hate that word. nothing hurts my feelings more. not the b word or c word. i am not lazy. i am disabled. that is how we bought the darn trailer. even the govt said nobody would hire me. and he expects me to clean house the way a normal person would. i told him that "i will do what I want, when I want, if I want and if he wants something clean that is not clean to clean it himself". some days all i can get done is the kids clean and fed.

i am not a normal person. i have fibro. it controls everything. i feel so bad right now. i feel like no one believes me. i wish i had bruises or something like that lady on the commercial.

i know i shouldnt have come out here and started the fight. i am just tired of listening to it every morning and feeling hurt all day. no apology. no explanaiotn when he gets home. he didnt think i could hear i guess. the only thing between us in the morning is a hallway and a door. i couldnt take it anymore. why does he think i am lazy. he says "if you exercise you will get more energy". yeah i know the pamphlet i gave you 4 years ago said that. but when, how. i just feel so bad.

i guess i want to know if anybody else deals with this?


----------



## Ruthla (Jun 2, 2004)

LionessMom I'm so sorry your "D"H is treating you like that. It sounds like he could use some kind of support group for "family and friends of people with chronic invisible illnesses."

My parents used to think I was "lazy" and couldn't understand why I couldn't do things that a "normal healthy woman in her 30s" can do, but they were never rude to me about it- it was more being dissapointed, frustrated, and confused by my behavior. But once I got SSI approved they did a complete turn-around. They realized that my illness is real and my limitations are real. Actually, it was my Dad who reacted this way to the SSI approval- my Mom beleived me from the start.

I'm still having a rough time physically. Maybe the oats aren't yet out of my system. Maybe it's from breathing in chlorine air at the park during DD's tennis lesson (the courts aren't all THAT far from the pool.) Maybe it's from eating Penguin Puffs (new cereal by Envirokidz, the brand that makes tons of GF cereals) and then realizing that these puffs may not be GF. Maybe it's from overdoing things yesterday. I don't know, but I'm tired of "almost feeling better" and then hurting again.


----------



## Indigo73 (Aug 2, 2002)

LionessMom, my DH does get "frustrated" but it's usually after an extended period of yuck. He's understands, heck I was diagnosed long before we started dating back then they called it Post-viral fatigue syndrome (PVFS). So he can't say he didn't know what he was getting into.









Yes, there are days I wish we could afford a cleaning lady, okay we could but it would mean more sacrifices. We've talked about it and continue to talk things through. I mean, I get just as frustrated with him sometimes. I wish I had a free day every week (he has Fridays off) child free to do whatever I wanted. Saturday is family day (the only day we both have off) and Sunday is literally my day of rest, as I need it so that I can be well rested to go to work the rest of the week.

We all have buttons. And as long we ourselves dwell on what we can't do, we are going to be guilted by it.

No, I can't rough house, no I can't deal with afterschool activities more than once or twice a week. But I do what I can.

I dwell on the positives, all I can. Some days I am better at it than others. My son is very content being at home, sitting quietly with me while we read. My son is very imaginative and can act out these amazing plays with his action figures on the end of my bed. My son's favorite park is the one with all the benches so I am always in eye sight and comfy when we go to the park, on the days when I am not up to pushing him on the swing or go down the big slide.

Oct 10th will be the 15th anniversary of my diagnosis of Post-viral fatigue syndrome (PVFS). Almost half my life. Wild... Oh it was around when I was 12 (chronic mononucleosis) but didn't get the attention it deserved until I had mononucleosis & viral pneumonia my junior year of college.


----------



## LionessMom (Mar 12, 2008)

thank you for reminding me that i am not the only one who has this. i feel all alone sometimes even though my mom has it too. verybody sees a perfectly fine 32 yr old woman with kids who stays home. they dont know i get SSI. they dont really know anything. i am sick of people expecting me to be able to do things b/c i dont look sick. i hate being sick for an extended period of time then starting to fell better enough to do stuff then getiing dumped on b/c i am not doing as much as they expect me to. i get wore out. i can only keep it up for awhile. the kids will be going back to scholl soon and that means getting up and getting ready. me and 4 kids while DH is already at work.
i am so glad that you ladies are here to talk to. if it wasnt for your post today i would be depressed all day. i now feel confident that i am not crazy. it is not in my head. i am not lazy. and i know my own limits.

ps i am going back to the rheum to see if there are new things i could try. and to get rechecked. i think i have CFS as well.

pss i was also diagnosed long before i met DH. the brochure i gave him when we first started dating is the only thing he ever read about it and it is outdated (4 yr). he thinks he can shame me into exercising. i told him i get enough exercising doing what i do and taking care of the kids.

psss. he is now cleaning the thing that argument was over b/c he felt bad.


----------



## Indigo73 (Aug 2, 2002)

Oh wanted to add, DH keeps a copy of The Spoon Theory in his wallet. A) to remind himself and B) to share with others when they are getting snarky.









The man has way too much energy. Not sure if I'm jealous or in awe.


----------



## LionessMom (Mar 12, 2008)

Quote:


Originally Posted by *Indigo73* 
Oh wanted to add, DH keeps a copy of The Spoon Theory in his wallet. A) to remind himself and B) to share with others when they are getting snarky.










The man has way too much energy. Not sure if I'm jealous or in awe.

i looked that up on line and had both DH and DS-13 read it so they would hopefully understand better. we'll see how that goes.


----------



## Ruthla (Jun 2, 2004)

How's everybody doing today?

I'm literally feeling under the weather- it's rainy and icky, so I'm achey and tired.

Oh, and I'm 36 now too.


----------



## Blooming (Feb 16, 2006)

Happy Birthday Ruthla!

Here's hoping for a pain free day for your birthday...

I am flaring on and off, like you said a lot of it has to do with the weather.

I am proud to say the I was able to take the kids out to a play date (without DH!) this morning. It was a big thing, my toddler even said "Three? There is only three of us where's Daddy?"

So I am feeling grateful for that. It's so healthy fo our family, the kids get to see freinds (and me too), and DH gets time to work without kids underfoot.

Oh, and another happy thing that happend was my little guy was given a dollhouse, he has been wanting one for a year, he is so happy!

Hoping to get the boys to smush up blueberries for frozen jam, we'll see, I may just be on the couch.

Hope everyone is well...


----------



## LionessMom (Mar 12, 2008)

i had a very long weekend. DH and i took the kids camping and to ride the steam train in Boone,Ia. we spent fri aft through sun evening out. i am having a hard time getting up to do anything. i sat around all day until i went to go get pizza for dinner. DS did the dishes and picked up the living room for me. such a sweet boy







:. it cost me pc time from when he was done until his bedtime







. my neck is hurting. sleeping in a tent is not as fun as it used to be. i need to invest in an air mattress. i did ride a train though! it was cool. so almost worth the pain for the next three days. the looks on the kids' faces was worth it!


----------



## JkFelix (May 27, 2005)

Hi ladies...

I have fibromyalgia and was just diagnosed last month. I always knew I had it, or something, although I was just written off at the drs time and time again for this or that. When I finally said, hey I think I have fibro, they sent me to a rheumotologist. he was very nice and offered me meds - which I refused. I just wanted someone to say, yes there is something wrong with you - your not a hypochondriac.

I am glad I found this tribe. Finally, others who know what it's like.

The worst part of fibro for me is the IBS and the joint pain. Every bone in my body cracks when I stand up - I feel like I am 63 not 33. My knees kill me and my neck and head always ache.

Oh well...such is life. At least my life anyway. I want to do yoga. I want to vacum the pool. But then I think, what will I feel like after? Last night I made a delicious lasagna for my family. It looks PERFECT. I ate a piece. Mistake. I had to take a half a xanax to counteract the anxiety I got from getting so sick after I ate. The night before I had spanish rice. Mistake.

Guess what I am eating for lunch today? Bland baked potato and peppermint tea. Boring

Anyone else have IBS?


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *JkFelix* 
Hi ladies...

Anyone else have IBS?

Have you had a full GI workup? If not, don't accept the diagnosis of IBS, insist on being evaluated. Celiac disease is far more common that folks realize (1 in 133 in the US) and researches suspect five percent or less of those folks is actually diagnosed.

Anyhow, nice to meet you, sorry for the circumstances.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *JkFelix* 
Hi ladies...

I have fibromyalgia and was just diagnosed last month. I always knew I had it, or something, although I was just written off at the drs time and time again for this or that. When I finally said, hey I think I have fibro, they sent me to a rheumotologist. he was very nice and offered me meds - which I refused. I just wanted someone to say, yes there is something wrong with you - your not a hypochondriac.

I am glad I found this tribe. Finally, others who know what it's like.

The worst part of fibro for me is the IBS and the joint pain. Every bone in my body cracks when I stand up - I feel like I am 63 not 33. My knees kill me and my neck and head always ache.

Oh well...such is life. At least my life anyway. I want to do yoga. I want to vacum the pool. But then I think, what will I feel like after? Last night I made a delicious lasagna for my family. It looks PERFECT. I ate a piece. Mistake. I had to take a half a xanax to counteract the anxiety I got from getting so sick after I ate. The night before I had spanish rice. Mistake.

Guess what I am eating for lunch today? Bland baked potato and peppermint tea. Boring

Anyone else have IBS?

Welcome mama, I have to 2nd the celicas work up, I was never offically diagnosed but for some reason when I eat gluten my fibro (and of course tummy) are a lot worse. For example before I quit gluten I was falling quite often. Now I only fall two or three times a month.
The IBS still happens from time to time, but much less then it did.

I really understand what you are saying about feeling 63. I find it very hard and even though I've had my diagnosis for over two years, I still struggle with it.

I hope you can find some comfort here.


----------



## JkFelix (May 27, 2005)

Thanks for the advice, but I had a sigmoidoscopy (not fun) and a celiac test and it turns out it is IBS. Stress really affects my IBS almost more than eating certain things so that may be the blame for my latest flare up.


----------



## errandguru08 (Aug 15, 2008)

Hi Jkfelix/Jolene,

I'm new to this group, but I wanted to reply. I have the same issues, fibromyalgia and IBS. I recently got the book "What Your Doctor May Not Tell You About Fibromyalgia." I've been suffering from both fibro and IBS since I was a teenager, but since having a child back in 2003 I've found my symptoms have worsened. The book recommends following a low-carb diet, which I am finding really helpful for the IBS. Stress also makes my symptoms flare, so I try to minimize as much as I can.

~ Jan


----------



## LionessMom (Mar 12, 2008)

im going to check out that low carb thing. i should watch my diet but i dont. i just make what i know. i would love to try more veggies with more variety. our veggies are the same thing. they wont eat beets, squash, eggplant or anything. just green beans, corn, salads, sometimes broccoli, and carrots. so limited.

does anyone else have emotional issues? i have borderline personality disorder. i have been told that having fibro makes you more sensitive emotionally. more afraid to do something that could hurt. less in control of your anger or sadness. the other name for bpd is emotional intensity disorder(eid). it feels like i am whittled down to my primitive side sometimes. after being in pain all day i find it hard to think straight. not getting a lot of sleep doesnt help either. i feel like i am 85 sometimes def not 32.


----------



## blissful_maia (Feb 17, 2005)

Just curious, mamas, how pregnancy and birthing were affected (if at all) by your fibro? We are TTC number three and dp expressed a concern that since my fibromyalgia has become so intense in the last few months/a year that maybe carrying a baby for 9 months will put me over the edge? But then I have also heard the theory that the hormones etc. are actually beneficial to someone with fibromyalgia!








Thanks!


----------



## bigeyes (Apr 5, 2007)

I've only been pregnant once, and I wasn't diagnosed with fibro until I was about 43, but I think I had it for a long time before that.

However, I felt _fantastic_ throughout my pregnancy. I had a difficult birth, though, complete with a NDE, and felt like I'd been run over by a truck for months afterwards. In the 11 years since I've had maybe 3 years where I felt _good_.

I'm feeling fairly OK right now, but I'm always waiting for the other shoe to drop, yk? My migraines seem to be slowing down now that the volcano activity has lessened and my thyroid/cortisol balance seems to be about right, but I've got some achy spots I haven't felt daily like this since I lived in Florida in the early 90s.

I figure living close to water probably aggravates it to some degree, but the psychological benefits offset it a bit for me. It's only bad first thing in the morning and at bedtime, or getting up and down after staying too long in one position is a killer. One of our cars sits very low and I really don't like driving it _at all.









_I've always said if I could have found a way to be pregnant forever, I would have. That was the best I ever felt in my entire adult life.


----------



## JkFelix (May 27, 2005)

I had HG - Hyperemesis Gravidum - when I was pregnant. The last two were especially bad and I could never survive another pregnancy.


----------



## Blooming (Feb 16, 2006)

It was actually my last pregnacy that brought my fibro on full force. The pregnancy and birth were fine but a couple months later, I felt horrid.

Like you I've read it can go either way.

I hope all goes well for you.


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *errandguru08* 
Hi Jkfelix/Jolene,

I'm new to this group, but I wanted to reply. I have the same issues, fibromyalgia and IBS. I recently got the book "What Your Doctor May Not Tell You About Fibromyalgia." I've been suffering from both fibro and IBS since I was a teenager, but since having a child back in 2003 I've found my symptoms have worsened. The book recommends following a low-carb diet, which I am finding really helpful for the IBS. Stress also makes my symptoms flare, so I try to minimize as much as I can.

~ Jan

Welcome Jan!

I've been feeling much better overall since going low carb, which I initially started for weight loss (since exercising more wasn't really an option, and neither was calorie counting when I'm in a flare and sometimes need to eat just to keep myself from feeling weak and dizzy.)

Quote:


Originally Posted by *LionessMom* 
im going to check out that low carb thing. i should watch my diet but i dont. i just make what i know. i would love to try more veggies with more variety. our veggies are the same thing. they wont eat beets, squash, eggplant or anything. just green beans, corn, salads, sometimes broccoli, and carrots. so limited.

does anyone else have emotional issues? i have borderline personality disorder. i have been told that having fibro makes you more sensitive emotionally. more afraid to do something that could hurt. less in control of your anger or sadness. the other name for bpd is emotional intensity disorder(eid). it feels like i am whittled down to my primitive side sometimes. after being in pain all day i find it hard to think straight. not getting a lot of sleep doesnt help either. i feel like i am 85 sometimes def not 32.

I can definitely relate to "being too young to feel this old."

Another advantage to a low-carb diet was that it's empowered me to cut back on problem foods even furthur. It's hard to cut out gluten when you base your meals on breads and pasta. Once I'd reduced grains to condiments, it was much easier to take the plunge and cut out gluten altogether. I've since cut out legumes and all grains, although I'm not 100% on either of those- I do eat rice and/or corn products a few times a week, and fermented soy products.

I've found that dairy really sets me off- not just with congestion and fibro flares, but with depression as well. I'm OK with butter though (determined by being completely dairy-free for several weeks then testing cream- no good, then another few weeks of eating clean, then testing butter.) I can sort of handle goat and sheep milk products, but I'm better off being dairy free completely.


----------



## LionessMom (Mar 12, 2008)

i loved being pregnant. i doubt we will ever have another baby though. i can hardly take care of the ones i have now. but i loved being pregnant. up until the last 2 months i felt great. i had energy and no pain. i was able to take a pregnancy yoga class. at the end though i had such pubic pain and sciatic pain. i like bfing too. i think the hormones from it help. i feel better right after bfing, i actually get up and clean something.


----------



## Indigo73 (Aug 2, 2002)

I was one of the lucky ones - pregnancy was wonderful. So much energy, pain free months. It was lovely. I found bf'ing very relaxing and energizing too. My symptoms are definitely less severe than before I was pregnant, but I know some of that is being more strict with diet, sleep and calendar, in other words lifestyle changes.


----------



## GinaRae (Mar 27, 2007)

Wow, I wasn't looking for an FMS group, but here you are!! I am on the upswing of a flare, have gained a ton of weight again and feel literally next to wanting a wheelchair. Thing is, I am nursing a 9 month old who is starting to get really mobile! I know a huge thing is my weight, sleep disturbance (about 3-5hrs a night) and the FMS pain.

I've been pretty down lately but normally I am







:


----------



## Ruthla (Jun 2, 2004)

Welcome GinaRae! I'm sorry you're suffering from FMS but I'm glad you found us.


----------



## Blooming (Feb 16, 2006)

I feel like someone rolled me through their pasta maker and turned me into flat stanely. Walking is officially on my list of things I don't want to do this evening.

How is everyone else doing?


----------



## LionessMom (Mar 12, 2008)

the bones in the bottome of my feet hurt. any pressure at all and they shoot with pain. other than that today was good. i even made homemade potato salad. did 4 loads of laundy and the dishes. i will pay for it tomorrow. oh well.


----------



## supakitty (Mar 6, 2002)

I don't mean to discuss other threads in this thread as I believe it is against the UA --- I do want to say, I was very, very upset by a comment made in TAO and it has really been eating away at me. I hate that people can toss FMS around so casually as if it isn't real. It's so easy for them, they're fortunate enough to have no idea what it's like.

*sigh*

-Laura


----------



## bigeyes (Apr 5, 2007)

Me too.

But then, I expect that kind of crap from the medical community whenever they can't solve a problem. It's always 'in our heads' because they're too arrogant to admit they don't know something.







:

The latest research shows that fibro is related to some kind of nerve miscommunication within our bodies. (posted a link in the other thread) Now if they can just find a way to _do something about it._


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
Me too.

But then, I expect that kind of crap from the medical community whenever they can't solve a problem. It's always 'in our heads' because they're too arrogant to admit they don't know something.







:

The latest research shows that fibro is related to some kind of nerve miscommunication within our bodies. (posted a link in the other thread) Now if they can just find a way to _do something about it._

This is so true, doctors are very left brain people, for the most part if they can't see it, then it is not there. And if they can't even vaguely try to cure you then they get mad too.

As for people talking about FM, I think your right in assuming they've never expereinced it or perhaps they did expereince it through a realitive and were affected by it somehow.

I don't know, my general rule (in real life and everywhere else) is to go with the ignorance is bliss theroy. Now I would be lying if I were to say I am not jealous of their bliss. Although I am trying to not be so jealous of others.

I guess the bottom line is compassion and if perhaps there was a little more of it, we would not need to feel hurt by others on top of the hurt FM is already causing us.


----------



## Grace24 (Mar 9, 2007)

Does it come on slowly? I don't know what I have but I know it's chronic pain, mostly in my back which can't seem to be dx'd as anything. Have been getting trigger point injections and it helps for a couple weeks. I have joint pain too, seems like I'm always at the doctor for one thing or another and no-one ever finds anything really.

Also I get stabbing pains in my feet mostly but also other places. They're debilitating when they happen.

Just trying to figure out what's going on with me. My chiropractor told me I just needed to do my ab exercises (which hurt me), and laughed when I told him how much I was hurting, so I dumped him and have been going to a pain clinic.

This may not be fibro but it may be, and is starting slow. I just don't know.


----------



## Grace24 (Mar 9, 2007)

Quote:


Originally Posted by *Blooming* 
It was actually my last pregnacy that brought my fibro on full force. The pregnancy and birth were fine but a couple months later, I felt horrid.

Yeah, it's worse since I had my baby.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Grace24* 
Does it come on slowly? I don't know what I have but I know it's chronic pain, mostly in my back which can't seem to be dx'd as anything. Have been getting trigger point injections and it helps for a couple weeks. I have joint pain too, seems like I'm always at the doctor for one thing or another and no-one ever finds anything really.

Also I get stabbing pains in my feet mostly but also other places. They're debilitating when they happen.

Just trying to figure out what's going on with me. My chiropractor told me I just needed to do my ab exercises (which hurt me), and laughed when I told him how much I was hurting, so I dumped him and have been going to a pain clinic.

This may not be fibro but it may be, and is starting slow. I just don't know.

In my case it did.

When I lived in Florida, I thought I had injured myself working out, because I started getting arthritic feeling aches in my shoulders and knees. I'd always had a trick knee, but one shoulder started giving me a lot of trouble, and I blamed it on the humidity. I smoked like a fiend at the time and drank a lot of coffee and soda, so I was running on stimulants constantly, and I think I was staving off a lot of the tiredness. But I didn't have any flexibility problems yet. I did have a lot of trouble waking up in the mornings and seemed to require an awful lot of sleep.

A few years later, I had more migraines, still needed lots of sleep, and started getting the brain fog, but wasn't feeling achy much. When I got pregnant I felt fantastic, then when I had my son I felt like hell. I had given up cigs and caffeine right after I got pregnant, and after the birth I just never felt right again. Over the years I got worse and worse. I still can't get up from the floor if I have to get something out of a lower cabinet now. I was flexible well into my mid 30s, so this one really bugs me. I have a lot of back and neck pain now and various joint aches, and I can't remember things at all. I used to have a great memory, got great grades in school and never had to study,tended bar for years and could remember drinks for a full bar and 2 waitresses all night no problem. I couldn't do that now to save my life.









I was diagnosed as having an unnamed sleep disorder a few years ago and now I have to take pills or I never get to the REM state. Who knows how long that went on?

From what I can see, I had a gradual decline that I held off for years with stimulants and when I got healthy and cut them out I crashed and burned big time. I believe fibro is somehow related to adrenal fatigue, since I know I have that also and some of the symptoms are the same, and they are both often thought to be made-up illnesses.

I think the foot pain you have is called plantars fascia? It's common in people with adrenal fatigue, fibro and thyroid problems, iirc.


----------



## Grace24 (Mar 9, 2007)

How very frightening, I have so much of what you mentioned.. over-reliance on caffeine (gave up ciggies a few years ago but just bought Nicorette cuz I wanted a cig so bad), needing more sleep than most people, trouble getting to sleep to begin with, headaches (which come in waves, I'll have a couple months of constant headaches and then it goes away), pain that moves around, plantar fascitis, etc.

I had knee surgery a couple years ago and it didn't help much, now I have pain in both knees.







:

Mostly I just hate how it limits my interaction with DS... I know my hubby thought he'd get more of a break with me being off work for the summer, but I just can't pick DS up. He's huge.

Sometimes it feels like my whole torso is inflamed, and I know stress makes it worse. Swimming helps a lot, as does yoga, but god forbid if I can't get to one of those activities in a day.

Ok, well, I might belong here after all.

My name's Julia, nice to meet y'all.


----------



## Ruthla (Jun 2, 2004)

Hi Julia. I hope you can get some answers soon- it's hard to deal with pain and fatigue when nobody takes you seriously.

I'm wondering what thread in TAO I missed, but maybe I *don't* want to see it.

Today I'm feeling very dizzy and confused and while I don't have a constant headache, normal noises are hurting my head. I felt this way yesterday as well, but today feels a tiny bit worse. I'm hoping it's just a virus that will work itself out soon- I'm very prone to inner ear problems.


----------



## bigeyes (Apr 5, 2007)

Something else I've noticed in the past couple of years, my hands don't work like they used to. I shake, and I don't seem to be able to grab little things as well as I used to, which is very annoying since I do all kinds of crafty things.

Anyone else?


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
Something else I've noticed in the past couple of years, my hands don't work like they used to. I shake, and I don't seem to be able to grab little things as well as I used to, which is very annoying since I do all kinds of crafty things.

Anyone else?


YES! I am an artist and I have not painted in months. My rhume tried to say it was carpal tunal (sp?). On days when I'm in a real bad flare, I can't even type or grasp my water bottle.

Since my hands go back to "normal" after the flare they haven't paid much interest.

I was also frustrated when a while ago I began expereincing stutturing and random ticks and noone really addressed it. I'm going to have to go back because now I'm forgetting names to common objects.

Has everyone here seen a neurologist?

Ruthla feel better.
Grace diagnoisis or not feel welcome to come chat with us about how you are.


----------



## LionessMom (Mar 12, 2008)

Quote:


Originally Posted by *Blooming* 
I was also frustrated when a while ago I began expereincing stutturing and random ticks and noone really addressed it. I'm going to have to go back because now I'm forgetting names to common objects.

Has everyone here seen a neurologist?

i went to a neuro once years ago when i was jsut diagnosed. i just felt stupid sometimes like i was drunk or stoned. i took a couple of tests but i dont remember them saying anything looked out of the ordinary.i took a cognitive test too that came back all right. if they do tests, tell us what they did and what they found.
it is very frustrating to be in this fog. i def feel less able to remember stuff or do math in my head. i used to be a whiz, but now..... i cant help DS with his homework all that well.


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *Blooming* 
I was also frustrated when a while ago I began expereincing stutturing and random ticks and noone really addressed it. I'm going to have to go back because now I'm forgetting names to common objects.

Has everyone here seen a neurologist?

Yes, I had a lot of neuro symptoms. I was told it was quite likely sub-clinical MS and that I'd just have to wait until there were diagnostic markers.

Turns out it was gluten ataxia. I went GF and after four years, most of my neuro symptoms are gone. You couldn't pay me enough to go back on gluten.


----------



## Grace24 (Mar 9, 2007)

Lots of pain today. Mine is mostly localized to the back, but god it's extreme and no-one can find anything wrong. I get pain other places too during activity... I can no longer tango cuz of my big toe joints (WTH did I ever do to my darn feet for god's sake, sitting for a living), swimming today hurt my right shoulder and my back STILL hurt afterwards, so finally by the end of the day I'd taken numerous combo's of tylenol, naproxen (perscription strength which I try to limit cuz it rips up my stomach after a few days), muscle relaxer, and finally a tylenol 3. Crap.

What, if anything, have you all found that helps? Any medications, exercises, anything?


----------



## supakitty (Mar 6, 2002)

I know I seem to be Queen Lyrica... but damn, it helped so much. I have my life back, that's how much it has helped, and I was bedridden for 4 solid months in crippling, horrendous pain.


----------



## Grace24 (Mar 9, 2007)

Oh, they gave me Lyrica to try at teh pain clinic, but didn't tell me how much, and said just take it at night, cuz it might make me tired. So I only took it a couple time sat night and wasn't sure it was helping. Maybe I'll give it another shot.


----------



## Ruthla (Jun 2, 2004)

Lyrica totally wiped me out- I couldn't even handle one subclinical dose.


----------



## Indigo73 (Aug 2, 2002)

From the folk that I've talked to that Lyrica worked for (I am not one of them) it seems cumilative, you may have to take it a while before you feel the effect.


----------



## jocelyndale (Aug 28, 2006)

Lyrica is off the table for me. I had an adverse reaction to Neurontin, but Neurontin did nothing for my pain or PN, so eh. Not too worried.

Foot pain can often be addressed with exercises, PT, orthoses, good shoes, etc. See a podiatrist. Seriously, working on my foot pain has helped a lot. Don't brush everything off as fibro. I have a lot of mechanical issues in my feet, compounded by PF. And seeing a podiatrist meant I could get rid of my handicap placard.

This reminds me, babywearing = flare-up of PF. I need to go back to the podiatrist and get an answer that doesn't involve "stop walking several miles a day". Maybe I should try the frozen water bottle trick. Problem with ice is that it triggers fibro/myofascial pain for me.


----------



## Blooming (Feb 16, 2006)

two questions for everone, I was at the doctor today, (She is a specialist in helping people who live with chronic pain improve their lives) and she noticed two things:

1) I have a faster heartbeat then normal, but a lower blood pressure the normal

and

2) My pain is much worse during a couple days before my cycle and a couple days after

Anyone else have these things noticed?


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *Blooming* 

1) I have a faster heartbeat then normal, but a lower blood pressure the normal

and

2) My pain is much worse during a couple days before my cycle and a couple days after

Anyone else have these things noticed?

1) Get a complete iron work-up, including ferritin. I was severely anemic. After my levels got up (required IV iron), those symptoms went away. I'd had them for years.

2) I think that's pretty typical among fibromites. Heck, normal women often report some degree of achiness/under the weather feelings around their menstrual period.


----------



## Indigo73 (Aug 2, 2002)

Quote:


Originally Posted by *jocelyndale* 
2) I think that's pretty typical among fibromites. Heck, normal women often report some degree of achiness/under the weather feelings around their menstrual period.

Ditto on #2.

As for #1, my blood pressure is normal, but I have a faster than normal heartbeat and arrhythmia (LQTS - have to take a beta blocker so I don't faint on a regular basis).

I try very, very hard not to clump all of my body's issues under fibro. I am a cancer survivor, monocular and have a long family history of heart problems and diabetes. Broke my back at age 7 (falling out of tree, 2nd story height) and played rough sports into my early 20s. I am a mess.


----------



## supakitty (Mar 6, 2002)

I am the same way around my menstrual cycle. The pain is always worse and the fatigue is crippling.

-Laura


----------



## Ruthla (Jun 2, 2004)

I'm always "under the weather" when I have PMS/AF, but I don't even think of that as part of fibro anymore. I just think of that as menstrual discomfort and fatigue.

I don't know if I'm in a flare or what, but that vertigo that started last week is still not 100% gone. It's better, and I can function, but I don't feel good. Last night I had a migraine.


----------



## fullofgrace (Nov 26, 2002)

Hello!

In the interest of limiting FYT to subjects not hosted elsewhere on the board, we have moved your tribe here. *You're still a tribe, which means you're still support-only.*









If you have any questions about the move, please do not discuss it on the boards. Rather, contact an administrator (in green) via Private Message or start a thread in Questions and Suggestions where one of the administrators will answer you.

Thanks, and happy posting!


----------



## Blooming (Feb 16, 2006)

Thanks for answering my questions mamas. Looks like we might look into the heart thing a little more.

I hope you are all well.


----------



## Ruthla (Jun 2, 2004)

I've been better- I'm still very tired and prone to vertigo.


----------



## supakitty (Mar 6, 2002)

Quote:


Originally Posted by *Ruthla* 
I've been better- I'm still very tired and prone to vertigo.

Exactly how I'm feeling. The vertigo drives me insane.


----------



## LionessMom (Mar 12, 2008)

i went to see the rheum yesterday. the first one wouldnt come out and say i had fibro only leaning there. the one i saw yesterday said yes. i have it. i wlready knew that and everything else she told me. she did say she would not reccomend lyrica. she didnt think it worked very well and thinks cymbalta worked better. she said that a lot of her patients had bad luck with lyrica's side effects. she said i seem to be doing all right and that i have a good handle on pacing myself and sticking to a sleep schedule.
when i went to go see her i was having a neck problem. i cant even turn my head to see what is behind me. she said keep going to the chiro. i cant really even use my arms. it hurts to wash or brush my hair. i will be fine in a couple of days but waiting is agonizing.


----------



## loobop (Jan 28, 2005)

I wish i had time to sit and read through this whole thread.
I dont know where to start, its so confusing. For me i think its a combination of lots of things, over years, which just makes things more confusing. I think having had kids changed my hormones/ brain chemistry or something. before pregnancy, i suffered regular 4-5 day headaches all my life (since puberty) (not as severe as migraines but lasting days---ugh).
Since having 2 kids my headaches have practically disappeared, but now i tend to get stomach upset (which i NEVER ever had my whole life--i always used to joke about having an iron stomach)--now i get ibs symptoms and bloating and cramping sometimes. its like i traded one off for the other.
i was in a car accident almost 2 years ago, which did some damage to my neck, head/ upper spine. about a month later i got the most crippling vertigo attack imaginable.
i couldnt get off the floor for three days. didnt want to drink liquids so that i didnt have to crawl to the toilet with my eyes closed head to the floor. i was very nauseous for 2 weeks. and now almost 2 years later still feel its affects. i can no longer go on swings, or even a rocking chair. if someone accidentally bumps me, sometimes it causes the most unpleasant feeling. like a rush of adrenaline (in an unpleasant way--seeing as though its not really a flight or fight situation). i get prickles all over my body--i think the expression jumping out of ones skin refers to that feeling perhaps, ugh again.
i have only slept solid through the night twice in the last 4 1/2 years. a little while ago i found out all about how when we sleep and have our deep sleep cycles is when our bodies heal all the little tear every body sustains just by doing stuff throughout the day. no wonder i feel like i have been hit by train each morning when i wake up. my poor body.
sometimes the achiness is so bad i cant drive, since i cant keep my arms up. i hear the pp a few posts above when she says she cant brush or wash her hair. the aches and pains move around. sometimes its deep in my hips, other times its my arms or wrists.
i hope this isnt a touchy subject for anyone, i believe in being able to talk about sexual abuse openly, especially since it happened to me. when investigating fm online i was interested to come across some studies that looked into patients with fm, and sexual abuse. i dont recall the stats but can try to find the website, a high number of participants in the study had suffered sexual abuse as children/ when they were younger.
i have tried many herbs over the past year since i realised i was in pain ALL the time (i cant believe how long it took me to realise). i self medicated with alcohol every night whicch didnt really help and has caused other problems. i tried st johns wort 9thinking i may have been depressed but had no other symptoms of depression other than the major fatigue). i tried valerian and kava kava, to relax and sleep at night. tried lots of other supplements, iron, omegas, fibroplex etc. i feel some helped, but not enough.
finally relented and saw a dr, took nortryptiline (?) for a while to sleep better. didnt take it every night, just some. i feel that has helped a bit. i have stopped drinking a bottle of wine every night for a couple of weeks now. i feel like things could be looking up.
i have all sorts of blood tests at the naturopathic doctors where i live, all my levels are great (things that are supposed to be high are high, things that are supposed to be low are low etc), the only thing i am low on is vitamin d.
the next test i want to do i my adrenals, but it will cost me about 40-, money we dont have. seems like i need to rule that out with my dr before continuing down the path of elimination.
i have only had mild flare ups, not anything like some mamas describe here. hugs to those that are in crippling, debilitating pain, i am so sorry mamas.
anyway, just kind of subbing and introducing myself. i hope my babble makes sense, feels good to let it out.


----------



## Blooming (Feb 16, 2006)

Loobop- hugs to you and all you've been through. I too am testing my adrenals and have problems with vitamin D. DH just drooped off the test today.
Looking back, I have also had headaches or migraines since I was a small child.

As Indigo mentioned it is so hard to know what is Fibro and what is left from previous emotional and physical trama. I hope you are able to find a way to sleep. I've heard from so many that even though Fibro doesn't disappear it helps so much with their symptoms.

I'm glad you stumbled across us.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *LionessMom* 
i went to see the rheum yesterday. the first one wouldnt come out and say i had fibro only leaning there. the one i saw yesterday said yes. i have it. i wlready knew that and everything else she told me. she did say she would not reccomend lyrica. she didnt think it worked very well and thinks cymbalta worked better. she said that a lot of her patients had bad luck with lyrica's side effects. she said i seem to be doing all right and that i have a good handle on pacing myself and sticking to a sleep schedule.
when i went to go see her i was having a neck problem. i cant even turn my head to see what is behind me. she said keep going to the chiro. i cant really even use my arms. it hurts to wash or brush my hair. i will be fine in a couple of days but waiting is agonizing.

Don't you love coming out of the doctor with no more info then when you came in? I hope you feel better quickly.


----------



## LionessMom (Mar 12, 2008)

Quote:


Originally Posted by *Blooming* 
Don't you love coming out of the doctor with no more info then when you came in? I hope you feel better quickly.

i feel better already today. i saw the chiro yesterday and the day before i will be going back on mon. thank goodness i have medicare or i couldnt afford it. it is the only thing that makes me feel better.

the only thing she didnt address was the fatigue. but she did say that the disposition to getting fibro is heriditary and theat some trauma brings it on. trauma like abuse, car accidents, emotional abuse, etc. and that we have a higher response to pain. we are 10 times more sensitive b/c of a chemical in our brain (sub p). she also said that sometimes fibro people have a vit D deficiency. the ;ast part was new to me so she is checking it. as far as treating it. she had nothing i didnt already know. moderate excercise, sleep schedule, eat right, pace yourself. sigh.....


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *LionessMom* 
i feel better already today. i saw the chiro yesterday and the day before i will be going back on mon. thank goodness i have medicare or i couldnt afford it. it is the only thing that makes me feel better.

the only thing she didnt address was the fatigue. but she did say that the disposition to getting fibro is heriditary and theat some trauma brings it on. trauma like abuse, car accidents, emotional abuse, etc. and that we have a higher response to pain. we are 10 times more sensitive b/c of a chemical in our brain (sub p). she also said that sometimes fibro people have a vit D deficiency. the ;ast part was new to me so she is checking it. as far as treating it. she had nothing i didnt already know. moderate excercise, sleep schedule, eat right, pace yourself. sigh.....

Your post has me thinking, are people Fibro more sensetive to pain in general? As in is labor more painful to us? If I break my leg will it hurt more then someone who does not have Fibro?

I know a lot of this is hard to tell because of so many variables. I always thought I had a pretty high pain threshold but when it comes to Fibro pain, well I am in pain.


----------



## LionessMom (Mar 12, 2008)

Quote:


Originally Posted by *Blooming* 
Your post has me thinking, are people Fibro more sensetive to pain in general? As in is labor more painful to us? If I break my leg will it hurt more then someone who does not have Fibro?

I know a lot of this is hard to tell because of so many variables. I always thought I had a pretty high pain threshold but when it comes to Fibro pain, well I am in pain.

that is what my research has me thinking. we have an elevated level of substance p in our spinal fluid. (i read this). which makes us more sensitive. then the rheum said it as well. she read of a test where they mapped brain activity of a fibro and non-fibro person. they took the persons thumb and applied pressure with their nail on the other person's nail until they said ouch or uncle or stop etc. the fibro people said it sooner than the non and the brain activity showed higher reaction in the fibro brain. this is the story she told me.


----------



## Ruthla (Jun 2, 2004)

But that doesnt' mean that we can't tolerate labor pain- with all those natural endorphins flowing and everything.

All I know is I've been sick for a week. I've stopped taking the pain med because it makes me more dizzy; and now I'm dizzy anyway due to horrid congestion. I coulndt even breathe lying down last night so I couldn't sleep.


----------



## LionessMom (Mar 12, 2008)

Quote:


Originally Posted by *Ruthla* 
But that doesnt' mean that we can't tolerate labor pain- with all those natural endorphins flowing and everything.

All I know is I've been sick for a week. I've stopped taking the pain med because it makes me more dizzy; and now I'm dizzy anyway due to horrid congestion. I coulndt even breathe lying down last night so I couldn't sleep.









i couldnt tolerate labor pain. but i give props to every mother that can!

i have been feeling very congested lately also. i got horrible pressure in my head. i wake up with a runny nose every morning. i am hoping it gets better instead of worse. can you use a humidifier or something? i like using citrus oil in a diffuser when i am sick.


----------



## Blooming (Feb 16, 2006)

I think what I was questioning is if people with Fibro interpruet pain outside of Fibro diffrently then the pain Fibro inflicts on us. According to LionessMom study the answer would be no. I shouldn't of used labor as an example, it was just the first thing that came to mind.

LionessMom and Ruthla, I hope you feel better. Ruthla does this mean you can't take any thing for the pain now?


----------



## jocelyndale (Aug 28, 2006)

Quote:


Originally Posted by *Blooming* 
Your post has me thinking, are people Fibro more sensetive to pain in general? As in is labor more painful to us? If I break my leg will it hurt more then someone who does not have Fibro?

I know a lot of this is hard to tell because of so many variables. I always thought I had a pretty high pain threshold but when it comes to Fibro pain, well I am in pain.

My doctors have explained it thusly: We may be more sensitive to pain, but that doesn't mean we necessarily have a lower pain tolerance. I have a very high pain tolerance, but my pain threshold is low. Things cause me pain which normal people don't even notice. That doesn't mean I can't tolerate them. Some folks have both a low threshold and a low tolerance. We're all different.

Dilation, pushing, etc . . . childbirth itself was not painful for me. The sciatic pain which shot down to my toes (both legs) from my sacroiliac joint with each contraction? THAT was painful and I'm not ashamed to admit that I screamed like a banshee to cope. The afterpains were negligible--my daily fibro pain is much worse. It's all relative.

For my regular sciatic pain, I see a doc to get treatment for it (osteopathic, PT, non-pharm).

I have a low tolerance for nerve pain so I do treat that if it's excruciating. I don't tolerate most meds, but I will resort to those if I need to. They really don't work well for me, though. I have issues with my feet, so I try to stay on top of PT, good shoes/orthoses, and seeing my doc when the nerves just won't quit.

I treat joint pain (which is not fibro-related) with topical/physical treatments and NSAIDs so that I can cope with the fibro pain more effectively. I'm working on the myofascial issues one region at a time, trying to reduce the amount of daily pain.

But yes. I will feel pain from the wrong type of clothing. Most folks won't notice that. A bump in road while riding in our very cushy sedan? Yes, that jars me all the way to my skull, again, it's not normal. Our systems are hyperagitated and overrespond or mis-respond to stimuli.


----------



## bigeyes (Apr 5, 2007)

My mom and I both have fibro, but for normal pain she has a very _high_ pain threshold and I have a very _low_ pain threshold. Our fibro pain seems to be the reverse. Mine is kind of minor and hers is to the point where she can't stand clothing or bedsheets touching her, where mine is more the irritating type, nagging neck pains, hip and joint pains, having trouble finding comfortable positions to sit or lie down, that kind of thing. And the chronic headaches, which I would kill to be rid of, but I don't know if I would trade them for the not being able to tolerate clothing thing, yk? It _all_ sucks, just in differerent ways.


----------



## Blooming (Feb 16, 2006)

Thanks everyone for sharing your thoughts on pain and how we expereince it.
It has given me some information that I didn't know before.

So now I have yet another question, what do you sleep on? My very old mattress is like a bed of rocks. I need to improve it! I would love to hear suggestions about what has worked for others. Right now I'm leaning towards some kind of mattress pad. But some of them are as much as a new mattress!


----------



## Indigo73 (Aug 2, 2002)

We currently sleep on a organic futon, it's not bad. I want to get a wool pad for it. The best nights sleep though was on my folks spare bedroom's Tempurpedic.

As for my fibro pain, it's mostly the extremely annoying clothing (only wear natural fibers, less seams the better), heavy air is pressing down on me ickies, ugh... my body just aches (I describe to non-fibro friends as similiar to fever aches) and occasionally the hit the right spot send me to my knees pain. My son was very good as hitting this spot on my shoulder that would literally buckle my knees with his chin when he was a baby. Also, prone to migraine and atmospheric pressure headaches.


----------



## Ruthla (Jun 2, 2004)

I can now definitely say that I no longer tolerate the Ultram.

A few months back my rheumy increased my ultram dose, as it wasn't fully helping with the pain anymore. It made me super dizzy and "drugged feeling" so I switched back to the lower dose.

Then 2 weeks ago I got sick and felt dizzy all the time. I realized that it was a very similar feeling to when I was on the higher dose of ultram. So I stopped taking the medication and the dizziness went away, though the pain increased.

Then I took it again last night and I feel dizzy and drugged today. Darnit! Maybe I'll be able to tolerate it again when my cold fully goes away (I had a sore throat yesterday and the day before, and last week I was super congested and then late last week I had a sore throat. That's almost fully gone, but I still can't tolerate the meds.

This really sucks!


----------



## supakitty (Mar 6, 2002)

Ruthla - Have you thought about Cymbalta?


----------



## Ruthla (Jun 2, 2004)

Quote:


Originally Posted by *supakitty* 
Ruthla - Have you thought about Cymbalta?

I'll have to talk to my rheumy about other options. We were hesitant to try me on any other meds because I react so badly to them and we finally found one that works. I guess now we're starting from scratch again.


----------



## LionessMom (Mar 12, 2008)

i think i would be ok if i just had a little more energy and motivation... sigh.


----------



## Blooming (Feb 16, 2006)

nevermind.


----------



## LionessMom (Mar 12, 2008)

so i have been thinking...
yeah yeah.. dont strain myself.. lol
anywho, i was thinking. how do you motivate yourself? how do you make yourself get up and do it anyway? should i put thumbtacks in all the seats, point up? should i lace my coffee with some energy drink? should i train my cat to jump in my seat before i do?
where is my energy? any of it? just a little?
the CPS worker and DSDs lawyer are coming over this afternoon and i feel i should at least pick up the living room and do the dishes, but i cant seem to find the energy.


----------



## Ruthla (Jun 2, 2004)

Nothing seems to motivate me more than my 13yo doing the household chores and complaining that she doesn't want to work alone.







She gets me started when otherwise I'd do a lot more vegging out.

Being motivated and having energy are two different things. I can be exhausted but still find the motivation to do a little bit, take a rest, do a little more, etc. I can have energy but still not use it for anything useful.


----------



## Indigo73 (Aug 2, 2002)

Quote:


Originally Posted by *Ruthla* 
Being motivated and having energy are two different things. I can be exhausted but still find the motivation to do a little bit, take a rest, do a little more, etc. I can have energy but still not use it for anything useful.

Exactly, I can be whirling around on a good day and get absolutely nothing accomplished or I have my little list of 15 minute chores that I accomplish with an 45 in to an hour's rest between each task. Nothing like scrubbing a dried up puddle of juice on the bottom of the fridge to wipe me out, but I nap or read or knit and then get on to the next task like swabbing the toilet or emptying the dishwasher or chopping veggies for dinner, rest and repeat.


----------



## LionessMom (Mar 12, 2008)

i always feel tired. on rare occasions i feel like i have energy. i think i overdo it then.

i bought some dr.scholls tennis shoes. they have this gel ball in the heel and under the ball of the foot. they feel great. they give me a spring in my step.







:


----------



## LionessMom (Mar 12, 2008)

i just got the letter from my rheum who did blood tests. apparently everything is normal. vit d, blood sugar, thyroid, etc. i was hoping there would be something to treat.







i could feel a little better. oh well.


----------



## LionessMom (Mar 12, 2008)

Hey everybody. it has been real nice out lately. about 70 degreesand low humidity. there is a great breeze flowing through the house. it is great. i always feel better during this kind of weather. i actually cleaned the whole house and am all caught up on stuff. i dont why, but i just feel good right now and am loving it. hoping it stays like this a while longer!


----------



## Ruthla (Jun 2, 2004)

I've been overall feeling good the past few weeks. I'm not sure if it's because I've finally discontinued my "gluten free oats" experiement or if it's because I'm off the Ultram. I never did go back to taking it after I got sick and suffered from vertigo, and I'm feeling much more energetic these days.

If it weren't for Passover I wouldn't care if I never consumed any grains again- but the Mitzvah (commandment) of eating Matzah is too important to me to give up unless I really truly need to, so I'm going to test each of the "5 species of grain" independently. So far I know wheat and oats are out. There's still barley, rye, and spelt to try. I may just wait until Passover and then test spelt, since I know I can get spelt matzahs for about $5 a box. I don't know if rye or barley matzahs even exist, or if so, where to find them.


----------



## sarah_bella1050 (Feb 19, 2005)

Hi everyone I hope you don't mind if I join in. I've had Fibomyalgia for 9 years now, was diagnosed when I was just 16 years old. Yep a teenager with the pain of a 60 year old is what my doctor said. I don't see a doctor anymore, I don't really talk about it or read about it, I try to ignore and deal and hope it will go away. I just don't want it to be there I guess I just try and pretend that everyone feels this way and just try to power on.

When I was on medication in my teens it didn't help it just made it worse. I went off everything when I was 19 lost 50lbs and went on an orgainic diet and saw quite a bit of improvement. I can't be around chemicals, I get instant headaches from commercial cleaners. Nitrates hurt me the worst, those things can't be anywhere near me. Yoga helps, but it's hard to go when I'm in pain, I need to get better about it.

I think the worst part about it is that I don't think I can handle another pregnancy. With my last it triggered my fibro so horribly I could barely peel myself off the couch. I had migraines eveyday, depression, ppd, I was such a mess and I didn't feel even remotely normal until dd2 was over a year old. I want a little boy so bad that it is to hard for me to have dh go get a vasectomy. I keep telling myself that I could just wait 5 more years and then maybe carve out 2 years of my life to have another









I was doing good with my pain management before, but lately things have kind of gone downhill, I've been swelling horribly every day and my knee has actually been going out or trying to go out, so I've been bound to the chair pretty much. I don't want to complain to my friends, my mom has rhuematoid so I don't really talk to her about it much, besides she'll just tell me to get on meds, dh already has enough to deal with. Grrr....I'm rambling sorry.

Anyways, I don't really want to complain, complaining jsut makes it worse, more real, I want salutions. How is every one coping, any new homeopathic or lifestyle changes that have been working. Any book recs? I have Reversing Fibromyalgia on hold from the library so I should start on that pretty soon.


----------



## Ruthla (Jun 2, 2004)

The most effective things I've found have been pinpointing and avoiding my own personal triggers, and learning to respect my limits. Really, that's all that works. How good or bad I feel depends on how well I've been sticking to my diet and getting enough sleep. Then, of course, I get flares at random times anyway, but they tend to be shorter lived and less severe when I'm taking better care of myself.


----------



## LionessMom (Mar 12, 2008)

Quote:


Originally Posted by *Ruthla* 
The most effective things I've found have been pinpointing and avoiding my own personal triggers, and learning to respect my limits. Really, that's all that works. How good or bad I feel depends on how well I've been sticking to my diet and getting enough sleep. Then, of course, I get flares at random times anyway, but they tend to be shorter lived and less severe when I'm taking better care of myself.

this is what i do too. i have to make sure i am going to bed at the same time every night and making sure i get up at the same time every morning. no tvs in the bedroom either. what you put it your body matters too.

im sick right now but hoping it will be short lived. i ususally get real sick but am trying to keep my hopes up while resting.


----------



## unlegal (Feb 18, 2005)

Subbing


----------



## Ruthla (Jun 2, 2004)

I've been doing OK. It's been super-busy around here with the Jewish holidays (that are thankfully over!







) but I've still been OK.


----------



## LionessMom (Mar 12, 2008)

that when you get hurt it takes fooooooorever to heal. exactly one week ago i fell and hurt myself. ok ok ok I was running in the hallway. yes my mom taught me better, and it was a good lesson for the kiddos as well but... it hurt. and still hurts too.
i live in a trailer so the halls are pretty small anyway. in the hall we a doorway on one side, then a bookcase (hip height) on the other side, and then a doorway on the first side. I ran down the hall. clipped DS shoulder with my left shoulder at the first door, spun into the bookcase with my right ankle and right wrist. bounced off the bookcase and into the doorjam of the 2nd door. i caught the doorjam with my left shoulder and neck. it bent me backwards and pulled something in my back. as i was laying on the floor (imagine bow pose but i wasnt grabbing my ankles) DSD2 jumped on my back and laughed at me.
this is what i get for getting a spurt of energy and trying to play with the kids.

DONT RUN IN THE HALL!!!!


----------



## Blooming (Feb 16, 2006)

oh man, that stinks. I hope you at least had a little fun with the kids before you feel.

It's funny that you should post this because, I have noticed this too and was reminded again this week, when a friend dropped a can of fruit on my foot. It's still a bit achey.


----------



## Blooming (Feb 16, 2006)

sigh, I think my days with jeans are gone, I've been trying to wear them for a week, and all they do is hurt my legs.

Guess I have to find something else to wear.


----------



## Sheal (Apr 19, 2007)

It's funny that this thread pops up on a bad day with the FMS\CFS.

Does anyone have any good results with compression wraps (for wrist, arm, ect) like I do? It's weird, if you poke me in a sensitive spot it hurts like the dickens but if I wear compression wraps with the right amount of pressure on my sore wrists or ankles it helps?

Anyone ever get the "rain drops on the feet" feeling while doing something that requires standing for more than 20 minutes? It drives me crazy. It feels like someone is sprinkling my feet with water from a spritz bottle.

How many points of pain do you all have from your DX? (me - over 18, way over). Do any of you suffer from bowel problems because of the FMS? Headaches? I've heard a common complaint with FMS patients is TMJ issues (I have those issues due to bruxism so I am not sure if it's the FMS or the bruxism).

Does the cold affect any of you? or the really hot humid days in the summer?

I'm fairly newly Dx'ed here, they did titers for rheumatoid arthritis, osteo-arthritis and I've done a bone scan that accidentally found scoliosis (3 yrs ago) which they think is idiopathic aggravated by injury related.

I'm so full of questions and just want a little support. I'm tired of people looking at me and saying "it's all in your head" and just judging me without knowing what FMS\CFS is.


----------



## Indigo73 (Aug 2, 2002)

Quote:


Originally Posted by *Blooming* 
sigh, I think my days with jeans are gone, I've been trying to wear them for a week, and all they do is hurt my legs.

Guess I have to find something else to wear.

I have clothes hurt kind of days. Seamless leggings and light airy shirts 2 sizes too big are what work for me then. It's funny because there are days the seams on my store bought socks dry me nuts. Got to get faster at knitting socks only have 2 pairs made for me at the moment and with winter arriving...

Quote:


Originally Posted by *Sheal* 
It's funny that this thread pops up on a bad day with the FMS\CFS.

Does anyone have any good results with compression wraps (for wrist, arm, ect) like I do? It's weird, if you poke me in a sensitive spot it hurts like the dickens but if I wear compression wraps with the right amount of pressure on my sore wrists or ankles it helps?

Anyone ever get the "rain drops on the feet" feeling while doing something that requires standing for more than 20 minutes? It drives me crazy. It feels like someone is sprinkling my feet with water from a spritz bottle.

How many points of pain do you all have from your DX? (me - over 18, way over). Do any of you suffer from bowel problems because of the FMS? Headaches? I've heard a common complaint with FMS patients is TMJ issues (I have those issues due to bruxism so I am not sure if it's the FMS or the bruxism).

Does the cold affect any of you? or the really hot humid days in the summer?

I'm fairly newly Dx'ed here, they did titers for rheumatoid arthritis, osteo-arthritis and I've done a bone scan that accidentally found scoliosis (3 yrs ago) which they think is idiopathic aggravated by injury related.

I'm so full of questions and just want a little support. I'm tired of people looking at me and saying "it's all in your head" and just judging me without knowing what FMS\CFS is.

I am old hat at FMS\CFS, was one of the first diagnosises in the state, that after years of being diagnosised with PVFS. I do encourage newly diagnosed folk to try not to lump "everything" under CFS. Migraines, limb tingles etc. can be part of something totally unrelated. I journal a lot so I can talk about it with my doctors. I am part of a couple Adult Survivors of Childhood Cancer study groups so am very aware that things can be connected but might not be.

I am more effected by heat than cold. Although I start wearing gloves at 40F which can get me odd looks but I like un-achy hands more than I care about public opinion.


----------



## unlegal (Feb 18, 2005)

Quote:


Originally Posted by *Sheal* 
Does anyone have any good results with compression wraps (for wrist, arm, ect) like I do? It's weird, if you poke me in a sensitive spot it hurts like the dickens but if I wear compression wraps with the right amount of pressure on my sore wrists or ankles it helps?

When I worked long hours as a pharmacy tech, I wore compression braces on my wrists, and they really did help. Otherwise, my wrists would be in so much pain at the end of the day. Never thought of using them for my ankles.

This was before I figured out I had FM.


----------



## Ruthla (Jun 2, 2004)

I've had a REALLY rough couple of weeks- DS was hospitalized for pneumonia and it put a lot of stress on the whole family. I was actually surprised that I wasn't in a flare by the end of the hospital stay- sleeping on that little pull-out couch next to his bed, being woken by nurses at all hours of the night, not REALLY having enough to eat most days (as it wasn't so easy to find gluten free, dairy free, kosher food.) But I somehow trudged on while at the hospital and then crashed the following week.

Yesterday I was tired and unsteady on my feet all day, and I tripped and fell on the sidewalk outside the chiropractor's office (right AFTER being adjusted.) Today I'm feeling a bit better than I have for the last week- maybe because I'm taking anaprox for both menstrual cramps and for achiness from yesterday's fall, maybe because I had liver for lunch and refilled some nutrient stores, maybe because AF finally showed up (although I haven't had heavy flow yet) or maybe just because DS was finally able to go back to school today (after being home 3.5 weeks) so it just feels good to be back to our normal routine.


----------



## LionessMom (Mar 12, 2008)

Quote:


Originally Posted by *Sheal* 
Anyone ever get the "rain drops on the feet" feeling while doing something that requires standing for more than 20 minutes? It drives me crazy. It feels like someone is sprinkling my feet with water from a spritz bottle.

*yes i get this. it starts for me after only ten min. my hands do this too if i am leaning on it, like on all fours, for more than 10 min too.*

How many points of pain do you all have from your DX? (me - over 18, way over).

*over 18*

Do any of you suffer from bowel problems because of the FMS?

*i have GERD and i have to take a stool softener and Nexxium everyday.*

Headaches? I've heard a common complaint with FMS patients is TMJ issues (I have those issues due to bruxism so I am not sure if it's the FMS or the bruxism).

*i get headaches mostly b/c my neck is so messed up. even though i go to the chiro. before i started seeing a chiro i would get real bad migraines regularly.*

Does the cold affect any of you? or the really hot humid days in the summer?

*the cold gets me to my bones. i wear lots of clothes when it is cold. the really humid days makes me immobile. i feel like i am literally melting.*

I'm fairly newly Dx'ed here, they did titers for rheumatoid arthritis, osteo-arthritis and I've done a bone scan that accidentally found scoliosis (3 yrs ago) which they think is idiopathic aggravated by injury related.

*i have been dx with scoliosis too. mine isnt too bad and is getting better with chiro treatment. my grandmother has it too.*

I'm so full of questions and just want a little support. I'm tired of people looking at me and saying "it's all in your head" and just judging me without knowing what FMS\CFS is.

*i have had fibro as long as i can remember. my mom has it also. she was dx when i was 16. i was dx about 10 yrs ago. the last rheum i saw said it was in my head, but she meant that the chemical that transmits the pain is higher in us than other people. the chemical is in the base of our brainstem i think, and in our spinal cord. called sub P. however that doesnt explain some of the other symptoms.*


----------



## Organicavocado (Mar 15, 2006)

Okay mamas. I want to come back and read this thread when I can concentrate, but I am fogging so bad so I just want to post this instead. So sorry if its already been discussed...

Is anyone taking Neurontin while nursing? I am so tired, and in such incredible pain, and I had to put my love kitty to sleep a few days ago so I am to emotionally drained to deal with the pain right now. Help?


----------



## Blooming (Feb 16, 2006)

I don't know about the pain meds and nursing, Do you have a doctor who knows about Fibro and nursing?
If I can't take pain meds I use lots of heat pads, maybe a warm bath and rest. I also try to keep my body warm woth thick socks and warm but comfortable clothes.

I'm sorry about your kitty. Is there anyone around that can help you out?

Here's hoping your pain gives you a break soon...


----------



## Organicavocado (Mar 15, 2006)

I felt it was the cold that made it so hard today, because it was in my bones, not my muscles. I soaked in a hot hot bath (I'm a Lush addict and baths are usually the only way I can rest at night, but today I took one in the early afternoon and nothing. Got out, realized it was cold (we keep it at about 67 in the house, I run really hot and esp. while breastfeeding, we live in the desert so usually the cold doesn't get to me) and turned the "heat" on to 70, but I got sweaty and hotflashy (I think I'm coming down with something) so I had to open the windows.

Decided to just take the neurontin. Hub took baby out to play at babies r us (got a pushing walker, he is still up at 10:30 pushing it around LOL <3) and took some milk so I could have a break. Bone pain is gone. Still sort of achey in the hips, cold feet issue, bath should take care of that and I feel like I might actually get some rest tonight.

Neurontin made MIL loopy so I wanted some alone time to guage how it would affect me.

Looking for a new doc who is a bit kinder and more understanding. Hopefully I should get in by Monday and get referred to a rheum. this has gone from barely noticeable to fully affecting my life in six months, and has progressively disabled me in the last three weeks.

Put out an ad for a sitter/mama helper and have a few people to interview hopefully over the weekend. I can only afford two days out of the month right now, but hubby and I are talking abou thim taking a second job and letting me have someone come two or three times a week to help with the little things that I just can't seem to get done (we just moved into a new place and i have the choice of keeping what is clean, clean.. and actually unpacking the second bedroom which is not even clean enough to walk through). That way he can work on his career and I won't be hurting for help. K is so needy right now and he is still so little, can't understand why mommy can't pick him up or carry him whenever he needs loving, so he is extremely difficult to deal with.. screams if I move 3 feet away.. so I can't leave him. I have to lay on the floor and watch him play and he only takes a 15 minute nap and I try to get something done but sometimes I just want to lay down and sleep with him.

Yuck. And I have one chenille sock, and one angora sock. Thanks a lot, dryer. I appreciate it when you eat my ouchie socks. NOT.


----------



## Organicavocado (Mar 15, 2006)

Quote:


Originally Posted by *Grace24* 
Yeah, it's worse since I had my baby.

Me too. I have had the fatigue and fog since.. 2002? Just wrote it off as being lazy and not being challenged enough mentally. Kind of went on like that for a while, then I noticed I couldn't hold a job. If I worked a full shift (began with my first waitress job in 2003/4) I would be so exhausted by the end of the day that I was always the first to be cut and the absolute last to leave. It took me hours to break down my station. I eventually got fired for great waitress things like totally forgetting drinks, or forgetting entire tables (once was my future grandmother in law. I quit after that.). My next job I could not work a full shift before I was hobbling all around. Just thought I was out of shape and lazy, still. Next job, same thing. Haven't worked a full shift since. Can't hold a job. My last employer was so kind. I was pregnant and miserably anemic and had even less energy than normal. She let me come in when I could, and leave when I felt I wasn't useful anymore. The pregnancy didn't help, but I know there was some CFS on top of it all and at the end there I was working 2-4 hours and was beat at the end of my shift. I loved my job more than any job I'd ever had before, and was so upset that I was basically useless.

After DS was born a few months passed where I was alright physically. Sleep deprived, yes, but still no issues getting out of bed and ready to face the day in the morning.

Two months ago I came under some emotional stress and it felt like a trigger was pulled. Suddenly I am sore everywhere (blamed it on cosleeping in wierd positions, which is part of the issue but not the whole thing) and even some places I liked to be rubbed and touched scream if pressed on. Massages are risky. Instead of helping me go to sleep as they did during my pregnancy, they trigger this burning sensation. I still like gentle gentle touch on my back, and very vigorous rubs as long as you dont go overboard on my tender spots, but "normal" strength touching makes my skin crawl. Its depressing really. The past few weeks, since we've moved, I have had trouble getting out of bed. I conserve energy all week so I can do my errands on weekends when hub can come along and help me with my koala kid who insists on being attached. I can't carry him anymore. Beyond all this I have an old shoulder injury, and now that he's 20 lb, I can hold him for about 5 min before falling apart. The babyhawk helps, I can carry him for a whole half an hour but I will pay dearly for it for days. Going out alone with him is an ordeal. He just wants me to hold him, and I just want to hold him, but there he has to sit in his stroller.

I raved "Nice sling!" to someone at the mall who had this gorgeous ring sling. Then I realized how stupid I looked pushing my kid around in his stroller, and hoped she didn't think I was being a turd to her. It was Xmas and we passed so fast, I had no time to chat.

Bleh. Yesterday was god awful. Wish I could figure out what "does it" for me.


----------



## bigeyes (Apr 5, 2007)

OMG, you guys, I'm so pi$$ed! I just found out the pill they give me to help me sleep is contributing to my brain fog and also can cause elevated blood pressure and heart rate.

But of course, doctors say elevated bp and heart rate mean you are on too much thyroid medication, so they want to lower that, meaning you have more reason to feel sluggish and stupid and fight your weight. And hypothyroidism can also cause high bp.

ARRRRRRRRRRRRRGH!

Now, if I don't take the stupid pills, I get a headache every day from lack of sleep. They don't make _anything_ that will help me sleep that does not have [email protected] side effects. They all cause weight gain, brain fog, headaches (which kind of defeats the purpose) or some other undesirable side effect.





























:























And when I asked about side effects with this pill, guess what both the doctor and the pharmacist told me?


----------



## JaneSmith1010 (Apr 22, 2007)

my doc thinks I have fibro and IBS on top of Celiac Disease I have already been diagnosed with. I always had bone pain, from 5 on up, that was very severe. I still have it, esp when I get gluten on accident. So, is this bone and joint pain also experienced by you all who def have fibro?

Also, he gave me ambien that he said would help releive my symptoms. I have heard bad things about it though and will not take it. Is there any other tricks--no meds--that you all use to get sleep?


----------



## bigeyes (Apr 5, 2007)

So I saw the new doc today and he was great. He told me to go ahead and try melatonin and L tryptophan and maybe even go ahead and look into medical marijuana since it's available here, or since my dh is a horticulturalist, just grow a plant myself anyway.









Gotta love that, right?









He agreed that pharmaceuticals may not be the best option, and even said that maybe if I just can get to sleep with natural methods I may not need anything else other than an occasional smoke/vape.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *bigeyes* 
So I saw the new doc today and he was great. He told me to go ahead and try melatonin and L tryptophan and maybe even go ahead and look into medical marijuana since it's available here, or since my dh is a horticulturalist, just grow a plant myself anyway.









Gotta love that, right?









He agreed that pharmaceuticals may not be the best option, and even said that maybe if I just can get to sleep with natural methods I may not need anything else other than an occasional smoke/vape.









I'm glad you sound a little better then the other day, I meet to reply but have been in a bit of a flare myself.

Your new doctor sounds much better, I'm glad he is open to diffrent solutions. Fibro effects all of us so diffrently.

Oh and I take melatonin an hour before I want to go to bed. It does help me settle down enough to get in a good round of sleep.


----------



## Blooming (Feb 16, 2006)

Quote:


Originally Posted by *jhow32000* 
my doc thinks I have fibro and IBS on top of Celiac Disease I have already been diagnosed with. I always had bone pain, from 5 on up, that was very severe. I still have it, esp when I get gluten on accident. So, is this bone and joint pain also experienced by you all who def have fibro?

Also, he gave me ambien that he said would help releive my symptoms. I have heard bad things about it though and will not take it. Is there any other tricks--no meds--that you all use to get sleep?

I would try gettting all gluten out of your life before taking anything, celiac's can cause horrible joint/muscle pain.

Since your not comfortable taking the amnien maybe try some melatonin first? My feeling is to always start with the gentlist approach possible and then step it up from there. Here's hoping you feel better...


----------



## Indigo73 (Aug 2, 2002)

How much melatonin do you take?

Some times it works like a dream for me and other times not so much. Currently it's a not so much period. Even Benedryl which usually knocks me out isn't working. Averaging 4-6 hours a night is sucking.


----------



## WuWei (Oct 16, 2005)

Check out the videos about bio-chemisty and the "Pink Pee" test to evaluate stomach acid (HCl). This is a terrific diagram of chemical *"Pathways to Happiness and Sleep" (Serotonin and Melatonin)*. http://www.understand-andcure-anxiet...Melatonin.html

*Do The Pink Pee Test:* http://heal-thyself.ning.com/forum/t...160Comment1050

Pat


----------



## Organicavocado (Mar 15, 2006)

I was fogging so bad I dont remember writing any of that.^

That flare lasted nearly 3 months I think. I finally got referred to *the* fibro specialist in the whole dumb state, who is apparently actively involved in new research but isnt openly sharing his findings within the medical community. Im not sure how I feel about that, Im so new to all of this, its just a relief to have someone say "Okay here, I know this this and this, and I think x leads to y and I don't think you have this this or this but I see the fibro in you, lets start your tests and I'll sign your husbands FMLA papers so he doesnt get fired see you next month. Here's something nursing safe for the pain, here's diet changes I want you to make (and why), and we will go from here."

So, I was wrestling the kid o'mine and my mom was with me and I recieved so much information that I was bursting, K wouldnt let me alone for half a second to get out my notepad, so I dont want to tell any info until I can get it semi straight. But it seems like good things on the horizon for me, and I am feeling much better the last few weeks, but starting to get really exhausted again during the day and have a rather short notice out of town trip next week so wish me luck staying awake for THAT one.


----------



## WuWei (Oct 16, 2005)

Bumping. Are you all following the detox pathway discussion in the Allergies forum? There are specific nutrients to help open the detox pathways which impact auto-immune responses.

Pat


----------



## tanyalynn (Jun 5, 2005)

Quote:


Originally Posted by *Indigo73* 
How much melatonin do you take?

Some times it works like a dream for me and other times not so much. Currently it's a not so much period. Even Benedryl which usually knocks me out isn't working. Averaging 4-6 hours a night is sucking.

Dosing for melatonin can vary widely. Some folks have odd reactions and do best trying really low doses, like 1mg, I started at 3mg and felt fine (I don't have fibro), but I've had to go higher at times, last winter I was taking 8mg per night every night--that's considered on the high end, though I've read of people taking a lot more.

Another sleep aid, for some people, is 5-htp, it is a precursor to melatonin and a couple other chemicals. Don't know dosing for that.


----------



## WuWei (Oct 16, 2005)

This is my new favorite site for evidence-based research about alternative treatments. There are over 50 studies about fibromyalgia!

Pat


----------



## earthmama369 (Jul 29, 2005)

Quote:


Originally Posted by *supakitty* 
I wrote this not too long ago about this very same feeling:

Chronic Illness

You see me and I look normal.

You see me as your colleague. Some days I greet you with a smile. Some days I look tired. Usually I am buried in work just like you, most of the time these days I just like to be alone. Some days I'm not there when I should be. Many days may go by and you begin to ask about me, why is she always absent, why does she call in sick, she doesn't look sick, she looked fine the other day&#8230;

You see me as a patient. I look fine, my tests are normal, and my illness has no name that you have found. You're tired of looking. You're tired of hearing about my symptoms. The endless battery of tests tells the story of a physically normal woman, the woman tells a different story. You offer me anti-depressants and benzodiazepines; you tell me I'm depressed.

You're right about one thing: I am depressed.

You see me as your mother. You know the look I get in public these days when I desperately need to go home and lay down. You used to argue but now you look at me and say, "Mommy, we can go home, I know you feel bad." You don't blame me for not being as good as the other mommies.

You see me as your partner. You watch me struggle and feel helpless. You hold me closely as you slowly adapt to the person I have become. You encourage me, you listen to me cry, you accompany me when I ask you to, you know when its time to go home. You look me in the eyes and tell me you believe me.

I see myself, 34 years old, once-strong, ambitious woman, now struggling to get through each day, living with a chronic illness that has changed every part of my life.

I'm sure this has been quoted before in this thead, probably a few times, but it really struck a note with me today and I thought it was worth a repeat. Excepting that I'm 33, this is where I am at the moment. I met with my rheumatologist, who confirmed what my neurologist told me a couple weeks ago -- I fit the profile for someone with fibromyalgia. Except he thinks I may have a metabolic myalgia on top of that. Because fibro's not enough? It's been a few years since the muscle symptoms started, over a decade with the other symptoms. It feels really good to finally have an answer, but man, what a sucky answer.

I'm ok with reconfiguring the house, my diet, my lifestyle, etc., to help my symptoms. I generally avoid medications, but we've determined if there were ever a time to start, this is it. The rheumatologist wants me to trial Neurontin (Gabapentin) for 6 weeks. Any experience to share with this particular med? I'm a little leery of the possible side effects.


----------



## JaneS (Jan 11, 2003)

Interesting correlation of FM with thyroid resistance that doesn't show on standard thyroid tests but improves with treatment:

Quote:

Conclusions

If cellular resistance to thyroid hormone is accepted as a subset of thyroid disease not directly involving the thyroid gland, then our findings suggest that most FMS patients have thyroid disease. About 10% have laboratory test results consistent with primary hypothyroidism, and about 45% have results consistent with central hypothyroidism. This is a total of 55% of FMS patients who may have hypothyroidism.

Of the remaining 45% who have test results consistent with euthyroidism, 75% on average improve or recover when treated on the assumption that they have thyroid hormone resistance. This 75% is about 34% of our total sample of FMS patients. For a total percentage of FMS patients with possible thyroid disease, we can add this 34% of patients with thyroid hormone resistance (according to the four post-treatment criteria) to the 55% of hypothyroid patients (according to thyroid function test results). *The result is 89% of FMS patients with putative thyroid disease*. (See Table 1.)
http://www.drlowe.com/france.htm


----------



## tireesix (Apr 27, 2006)

Got my date through for the lignocaine infusion (its on the NHS so had a wee wait) and its going ahead at the end of the month!!!!!!!

I am seeing the pain rehab people on thursday this week so all be good this month.

I feel like shit though.....


----------



## tireesix (Apr 27, 2006)

Ok, been a while since I was here. I had my first Lignocaine infusion on Wednesday, I am sad to say it hasn't done much but it was the first one and it was started at a very low dose. I am down for a course of them with the dose increasing each time. My next one should be in 10 weeks time.

I am just not sure how effective they are going to be as I don't really respond to local anaesthetic thanks to my EDS. The anaesthesiologist said it might just be that I have to have a really hig dose in order to find it effective. In the mean time though, we are just going to have to play with it and hope it works.


----------



## babybirkel (Apr 1, 2009)

can i join you?

i went to see my doctor today and she's doing some bloodwork to see if my thyroid meds need to be adjusted again, and to test for some other stuff, but she said that if my bloodwork comes back all good (which i strongly suspect it will), i likely have fibromyalgia.

she said that today, and i went home and researched it, and suddenly my life made sense.

this horrible feeling of exhaustion isn't normal. normal people don't feel like this. i'm not stupid, or crazy, or lazy when i say that i don't feel well. when my husband doesn't understand why a productive day for me involves doing laundry. it's not normal to feel sore and achy all the time. it's not normal to not sleep ever despite being so exhausted that running an errand will wipe me out. it's not normal that going to work for a 5 hour shift will take me days to recover.

i am hypothyroid, and i have low vitamin D levels. i also strongly suspect adrenal fatigue.

i am 17 weeks pregnant with my second. DS1 is 19 months old. i feel like a horrible mom to him most days. he deserves a fun mom who can do more activities with him...

after my son was born i think maybe the shift in hormones caused a flare up, because i have felt like crap pretty much ever since. he didn't really sleep more than 2 hours at a time for the entire first year of his life, and i began struggling with insomnia shortly after he was born, which meant i didn't sleep between feedings.

i am depressed and anxious. will i ever feel better? somedays i just don't know how much longer i can go on like this. i am very depressed.

i am terrified -- TERRIFIED -- of having a newborn on top of this and chasing a toddler. i feel horrible because i am not even excited about having this baby. i thought i wanted another baby and now i just don't know how i will cope. i know i will love this little one, but i am so so so so so so so scared.

my doc wants to put me on antidepressants (lexapro) just to help me function, anybody have any experience with that as part of making your life with fibro a little easier?

i hate insomnia. for me it is worse than the pain. at least right now. i think anything could be tolerable if i just got some decent sleep ever. i am averaging between zero to 3 hours a night (3 if it's a morning my husband is home and will get up with our son and let me sleep in a little).

even though, before i had insomnia, i could sleep forever and never feel rested. 14 hours a night and wake up exhausted.

anyway, i am rambling...this isn't unusual for me. just thought i'd stop in and say hi.


----------



## JaneS (Jan 11, 2003)

Quote:


Originally Posted by *babybirkel* 
can i join you?

i went to see my doctor today and she's doing some bloodwork to see if my thyroid meds need to be adjusted again, and to test for some other stuff, but she said that if my bloodwork comes back all good (which i strongly suspect it will), i likely have fibromyalgia.

Are you on T4 for thyroid replacement? for thyroid info, I rec reading www.stopthethyroidmadness.com

Dr. Lowe treats fibromyalgia with desiccated thyroid based on symptoms and is getting excellent results. There are a number of drs (also Stephen Langer based on Broda Barnes' work, and Mark Starr) now who believe FM is just a new fangled name for an old problem: poorly treated or unrecognized hypothyroidism with an overeliance on lab tests that do not reveal all thyroid disorders.


----------



## chlobo (Jan 24, 2004)

Jane,

Is there a way to find someone locally who understands & uses Dr. Lowe's protocol? My mom had her thyroid removed & she is taking synthroid but I think she can do better.

Also, what labs does he do to prove his point, if one's thyroid labs are all normal?


----------



## babybirkel (Apr 1, 2009)

@JaneS, I am on Armour thyroid. I was on levothyroxine for a while but I requested to be put on Armour after doing some research.

I take 30 mg a day. I don't know that it helps though...at all. I feel like crap all the time.

I don't know, maybe I need to try one of these other desiccated thyroid options...and see about upping my dose.

Back when I had my bloodwork tested originally, I was only very slightly hypo...TSH level of 4.5. I recently had it re-tested in July and it was down to 1.6...I know that the TSH level lab test doesn't really mean a whole lot though. But I'm just saying that I was never severely hypothyroid to begin with, for what it's worth.

I just want some answers so I can feel better...I don't know why no one knows what is wrong with me. Maybe if I got some sleep and had some energy I could try to figure it out myself...

I just did a saliva test for adrenal fatigue but it'll take a few weeks to get the results back even though that was $120 bucks we really didn't have. I am already taking all the supplements that are recommended for adrenal/thyroid support (coQ10, B complex 50, magnesium citrate, vitamin D, vitamin C, spirulina, inositol, flax seed oil, in addition to my prenatal...plus sea salt on everything).

so why do i still feel terrible?? i just want to sleep and make my body stop hurting.


----------



## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *babybirkel* 
@JaneS, I am on Armour thyroid. I was on levothyroxine for a while but I requested to be put on Armour after doing some research.

I take 30 mg a day. I don't know that it helps though...at all. I feel like crap all the time.

I don't know, maybe I need to try one of these other desiccated thyroid options...and see about upping my dose.

Back when I had my bloodwork tested originally, I was only very slightly hypo...TSH level of 4.5. I recently had it re-tested in July and it was down to 1.6...I know that the TSH level lab test doesn't really mean a whole lot though. But I'm just saying that I was never severely hypothyroid to begin with, for what it's worth.

I just want some answers so I can feel better...I don't know why no one knows what is wrong with me. Maybe if I got some sleep and had some energy I could try to figure it out myself...

I just did a saliva test for adrenal fatigue but it'll take a few weeks to get the results back even though that was $120 bucks we really didn't have. I am already taking all the supplements that are recommended for adrenal/thyroid support (coQ10, B complex 50, magnesium citrate, vitamin D, vitamin C, spirulina, inositol, flax seed oil, in addition to my prenatal...plus sea salt on everything).

so why do i still feel terrible?? i just want to sleep and make my body stop hurting.
















I hate to ask this question but have you been tested for lyme disease? Symptoms can be similar and lyme can screw your body up in so many ways.


----------



## babybirkel (Apr 1, 2009)

@chlobo, no i haven't, but as far as i know i have never had a tick bite. i also have not ever noticed that rash that is characteristic of lyme disease.


----------



## earthmama369 (Jul 29, 2005)

Popping back in for a quick update. I've been on a gradually stepped-up dose of Gabapentin for the last five weeks. Every time I step up the dose, I spend four days completely and utterly stoned. Can't drive, can't use knives to prepare food, the walls dance and I'm all kinds of happy type of stoned. Then it evens out and I have a couple weeks where it really helps my sleep and pain levels, and then it starts to wear off. I see the rheumatologist next week to check in before stepping it up the last time to the full dose he wants me on. Because it does help with my sleep a lot, I'm willing to give it a try for a few more months before deciding if I'm going to stay on it or wean off. I did discover that caffeine completely negates its pain-relieving ability, which sucks since I was having a cup of tea in the morning to help combat the drowsiness it gives me. It also kills my appetite, which is a little frustrating. I don't know. On the whole, I'm still not able to work, and I'm still using two canes to walk most days, though I do feel a bit better medicated than not. I don't think I've gotten the right combination of meds and therapies yet. Early days, early days. We'll get this figured out.

Quote:


Originally Posted by *earthmama369* 
I'm sure this has been quoted before in this thead, probably a few times, but it really struck a note with me today and I thought it was worth a repeat. Excepting that I'm 33, this is where I am at the moment. I met with my rheumatologist, who confirmed what my neurologist told me a couple weeks ago -- I fit the profile for someone with fibromyalgia. Except he thinks I may have a metabolic myalgia on top of that. Because fibro's not enough? It's been a few years since the muscle symptoms started, over a decade with the other symptoms. It feels really good to finally have an answer, but man, what a sucky answer.

I'm ok with reconfiguring the house, my diet, my lifestyle, etc., to help my symptoms. I generally avoid medications, but we've determined if there were ever a time to start, this is it. The rheumatologist wants me to trial Neurontin (Gabapentin) for 6 weeks. Any experience to share with this particular med? I'm a little leery of the possible side effects.


----------



## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *babybirkel* 
@chlobo, no i haven't, but as far as i know i have never had a tick bite. i also have not ever noticed that rash that is characteristic of lyme disease.

Have you ever been to an area where there are ticks? People frequently don't notice getting bitten. And the rash only appears in about 30% of the people. I've known a lot of people in my town who have had lyme but not had the rash.


----------



## babybirkel (Apr 1, 2009)

@chlobo -- well, I do live in Indiana (there is some risk here, I guess), and hike and camp. we always check for ticks whenever we shower or change clothes. but it's possible that i missed one, i guess. i'll ask my doc about it if my bloodwork comes back all clean otherwise.

blech. gives me the heebee-jeebees.


----------



## babybirkel (Apr 1, 2009)

and reading about lyme disease in pregnancy is absolutely terrifying.

i'd rather have something -- anything -- else....


----------



## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *babybirkel* 
and reading about lyme disease in pregnancy is absolutely terrifying.

i'd rather have something -- anything -- else....

Yes, I absolutely agree. HOwever, I also know of someone who was treated with abx during pregnancy & she and the baby are both fine.


----------



## subtlycrunchy (Jul 29, 2006)

Women to Women recommends the SHIN protocol -- Sleep, Hormonal imbalances, Infections, and Nutrition. Sounds pretty basic, but there is actually a lot to this -- and it seems to work. Here is their article Treat Fibromyalgia Naturally Even if SHIN isn't for you, still a great article packed with helpful, natural info!


----------



## JENinOR (Mar 14, 2006)

Quote:


Originally Posted by *babybirkel* 
@JaneS, I am on Armour thyroid. I was on levothyroxine for a while but I requested to be put on Armour after doing some research.

I take 30 mg a day. I don't know that it helps though...at all. I feel like crap all the time.

I don't know, maybe I need to try one of these other desiccated thyroid options...and see about upping my dose.

Back when I had my bloodwork tested originally, I was only very slightly hypo...TSH level of 4.5. I recently had it re-tested in July and it was down to 1.6...I know that the TSH level lab test doesn't really mean a whole lot though. But I'm just saying that I was never severely hypothyroid to begin with, for what it's worth.

I just want some answers so I can feel better...I don't know why no one knows what is wrong with me. Maybe if I got some sleep and had some energy I could try to figure it out myself...

*I just did a saliva test for adrenal fatigue but it'll take a few weeks to get the results back even though that was $120 bucks we really didn't have.* I am already taking all the supplements that are recommended for adrenal/thyroid support (coQ10, B complex 50, magnesium citrate, vitamin D, vitamin C, spirulina, inositol, flax seed oil, in addition to my prenatal...plus sea salt on everything).

so why do i still feel terrible?? i just want to sleep and make my body stop hurting.
















Babybirkel, just wondering if you go your results back? I have fibro. and my ND wants me to do this.


----------



## Richie'sMama (Dec 4, 2001)

You might want to google NeuroSensory Centers of America. They treat Fibromyalgia and other chronic pain syndromes -- after sensory testing, they prescribe a combination of diet, supplements, and detoxification -- and they accept insurance.

Feel better!

- paula in pa


----------



## JaneS (Jan 11, 2003)

Quote:


Originally Posted by *babybirkel* 
@JaneS, I am on Armour thyroid. I was on levothyroxine for a while but I requested to be put on Armour after doing some research.

I take 30 mg a day. I don't know that it helps though...at all. I feel like crap all the time.

I don't know, maybe I need to try one of these other desiccated thyroid options...and see about upping my dose.

Back when I had my bloodwork tested originally, I was only very slightly hypo...TSH level of 4.5. I recently had it re-tested in July and it was down to 1.6...I know that the TSH level lab test doesn't really mean a whole lot though. But I'm just saying that I was never severely hypothyroid to begin with, for what it's worth.

I just want some answers so I can feel better...I don't know why no one knows what is wrong with me. Maybe if I got some sleep and had some energy I could try to figure it out myself...

I just did a saliva test for adrenal fatigue but it'll take a few weeks to get the results back even though that was $120 bucks we really didn't have. I am already taking all the supplements that are recommended for adrenal/thyroid support (coQ10, B complex 50, magnesium citrate, vitamin D, vitamin C, spirulina, inositol, flax seed oil, in addition to my prenatal...plus sea salt on everything).

so why do i still feel terrible?? i just want to sleep and make my body stop hurting.
















There are problems with the filler in Armour... meaning that the hormones are not being absorbed correctly, it was changed recently, see here:
http://www.stopthethyroidmadness.com...-have-learned/

The fix is to let it dissolve under tongue or chew it up completely.

Is 30mg one grain of Armour? That is a very low dose. If you do not feel better you should be upping it. It would make sense from both of those reasons why it's not helping you.

You can be severely hypothyroid and the labs tests are "normal". I likely am, I cannot say for sure as I have yet to trial desiccated thyroid but when I do everyone will know that's for sure!







I have so many clinical symptoms its crazy. My TSH is under 2, my free T3 is only slightly low and I have high reverse T3 which is usually not tested by most doctors and most do not believe in it.

There are ways the thyroid functions in the body that doesn't effect blood values. For example, your cells could not be absorbing or using thyroid hormone due to mitochondrial defects, thus blood values stay normal because it's simply just not being used by the body. This is the whole premise behind Hypothyroidism Type 2, aka thyroid resistance:

http://www.21centurymed.com/?page_id=12

I've been doing several months now of reading about the thyroid. There is a very large body of clinical research that shows that desiccated thyroid treats muscle pain. And as I said before, many doctors who ascribe to this way of thinking treat FM as another new word for an old problem: hypothyroidism. Because the clinical signs and resolution of the problem are exactly the same.


----------



## babybirkel (Apr 1, 2009)

JENinOR -- i got my results back, but i have to meet with the nurse practitioner to go over them -- which i do tomorrow afternoon.

i have been on lexapro for not quite 3 weeks now, and i feel it is at least helping with symptoms and making it so i can sort of function day to day. i sleep a little better now, but still not great.

i meet with my regular doc in early october and i will bring up upping the armour. i do chew it.


----------



## JENinOR (Mar 14, 2006)

Quote:


Originally Posted by *babybirkel* 
JENinOR -- i got my results back, but i have to meet with the nurse practitioner to go over them -- which i do tomorrow afternoon.

i have been on lexapro for not quite 3 weeks now, and i feel it is at least helping with symptoms and making it so i can sort of function day to day. i sleep a little better now, but still not great.

i meet with my regular doc in early october and i will bring up upping the armour. i do chew it.

Thanks bb. I am doing my cortisol test today, will mail tomorrow and should have results just under 2 weeks. I will start armour and Phytisone by Thorne (adrenal support nutrients/herbs) tomorrow...so they don't skew the test. Hopefully, this all helps. My ND is expecting my adrenal test to be rock bottome low. Based on symptoms, I agree wholeheartedly!


----------



## babybirkel (Apr 1, 2009)

ok, i got my results back, and (shocker) my adrenals are shot.

my NP wants to put me on cortisol, but it makes me nervous because i am pregnant. the way she explained it to me is that i have to up my dose at random times of the day until i feel better, and it basically "shuts off" my adrenals so it can be bad if i miss a dose or two because then my body cannot respond to stress at all. i mean, my adrenals are fatigued for sure, but they aren't off, you know? i'd rather try to heal (albeit, more slowly) through herbs and more natural means that won't kill me if my meds get separated from me somehow.

anyone have any experience with treating adrenal fatigue with a low dose (like 5mg) of cortisol while pregnant?

just makes me nervous for some reason.


----------



## JENinOR (Mar 14, 2006)

Quote:


Originally Posted by *babybirkel* 
ok, i got my results back, and (shocker) my adrenals are shot.

my NP wants to put me on cortisol, but it makes me nervous because i am pregnant. the way she explained it to me is that i have to up my dose at random times of the day until i feel better, and it basically "shuts off" my adrenals so it can be bad if i miss a dose or two because then my body cannot respond to stress at all. i mean, my adrenals are fatigued for sure, but they aren't off, you know? i'd rather try to heal (albeit, more slowly) through herbs and more natural means that won't kill me if my meds get separated from me somehow.

anyone have any experience with treating adrenal fatigue with a low dose (like 5mg) of cortisol while pregnant?

just makes me nervous for some reason.

Well, I am, but I'm not shocked. Wow. I haven't figured out what will be necessary if my testing shows low/no cortisol and I haven't discussed this with my ND, so I'm no real help there. I will have to find my adrenal fatigue book and do some research for ya. I can't imagine my ND would want to put me on something like you described above! Sounds scary to me too. I'll let you know what I find out. For me, I think my adrenal fatigue has to do with lots of stress the last few years, nutritional def., and a horrible gut dybosis that is stressing/depleting my body. I literally have millions and millions of bacteria in my gut. Quite disturbing really. So we will be addressing the above issues to help holistically.

So glad you got another piece of the puzzle today.


----------



## tireesix (Apr 27, 2006)

In pain....... Gah.

What I am finding sucks about fibro at the minute is that its impacting on the physio for the EDS. With the EDS I need to stay active to help keep the muscles etc strong and yet thanks to the fatigue with the fibro its really hard.

Just so tired of it all and have been put back onto anti depressants.

On the plus side, in spite of my kids suffering pain with EDS, they are a happy bunch and I had the school nurse call me up to tall me how wonderful they are!!!!!! Thats enough to lift anyones spirits!!!!!!!

Gentle hugs for all who need them xxxxxxx


----------



## JENinOR (Mar 14, 2006)

I got the results from my stool test and talked with my ND today. She was so very helpful, which is not always the case concerning MDs or NDs as we have found over the years!

I have high enough levels of Candida (fungus) to be concerned about and she thinks they would have been higher if it hadn't been for some treatment I had awhile back, but had to stop as it made me unable to function (felt like I had the flu times 10)

I also have "abundant" pathogen/bacterial overgrowth (no pathogens should have been detected.)

My chymotrpsin levles are abnormally low. "Chymotrypsin is a marker enzyme for pancreatic exocrine output. A low Chymotrypsin value is suggestive of poor pancreatic output of all enzymes."

My alpha anti-chumotrypsin levels were somewhat elevated which shows there is some inflammation going on in the lower intestine, but upper intestine seemed fine. Upper intestine is where water is mostly absorbed and lower is where mostly nutrients are absorbed.

What was most concerning was my total intestinal SIgA levels. They should be at 400-880 mg/dL and mine were at less than 1. What this shows is this has been going on a long time. It also shows that my gut is in terrible shape (leaky) and my immune system and ability to absorb (state of the intestinal villi) nutrients is shot.

*Dr. Mercola says, "Most people, including many physicians, do not realize that 80 percent of your immune system is located in your digestive system, making a healthy gut a major focal point if you want to maintain optimal health. Remember, a robust immune system is your number one defense system against ALL disease"*

I *only* had chronic fatigue 10 years ago and now have fibro, vulva vestibulitis (sucks), MAJOR food allegies and struggle with depression/suicide.I believe I've had milk allergies for some time which can start this whole chain of events, but usually it is a combination of things. We actually are born with both good and bad bacteria in our guts (ratio and variety is dependent on a lot of factors as well) and something like antibiotics, prolonged stress, crappy food, or insufficient good pb or abundance of the bad to begin with (birth) or a combination for example can allow the bad guys to over grow. So, the pathogens i'm dealing with could be native rather than foreign invaders, but are probably a mix. Healing the gut should give me some foods back (heal food allergies) as pathogen overgrowth itself and their effect on the GI tract can lead to food allergies or exacerbate them. If I could get only one of gluten grains, milk, or eggs back the I'd be happy. 

It takes a long time to heal the gut, but we'll be starting in greater earnest very soon with diet (key), meds, and nutritional supplements. I'll be taking Nystatin (antifungal) and penicilin (antibacterial) along with a strong probiotic. I will probably need the pb for life or when I get to better use some kind of fermented food that is pb rich daily. I'll also be taking milk thistle phytosome for liver support and digestive enzymes for digestive support (until my body starts doing what it should do on its own again). My cortisol (hormone that allows one to cope with stress and so much more) levels are trashed as well and healing the digestive tract should naturally bring this up when it needs to be during the day and down when it should be at night (currently they are reversed -did a cortisol test).

I'm so excited to be well and am feeling very hopeful! It will probably get worse before it gets better (the waste from the candida and bacteria produce alcohol like toxins and poison the muscles, brain, everything) and when you start killing them they really release these toxins. My dr. will be doing all she can to take it slow with me so as not to cause too much of a die off and is giving me other supportive stuff to help ease the process. HTH somesone!

Here's more if you want more info and below is an excerpt.

http://www.yourmedicaldetective.com/drgrisanti/Mucosal%20Barrier.htm

Quote:


> *T*oxins that enter the bloodstream during a damaged mucosal barrier end up in the liver, which has the job of detoxifying and discharging the poisons. Under normal conditions, the liver is taxed just by processing the daily metabolic wastes created by cell and organ activity. Imagine the further load created by dumping serious intestinal toxins on a regular basis. There is a point when the liver becomes saturated; it cannot further detoxify the poisons, and they are returned to the blood circulation. The blood has sophisticated mechanisms for preserving chemical homeostasis, and will diffuse as much of the toxic chemicals and physical debris into the interstitial fluids as is possible. From here the lymphatic system will attempt to collect and neutralize the toxins, but unable to send the toxins to the liver, the body essentially becomes toxic. Microbes grow and develop, hence there can be chronic lymphatic swelling, especially in children. Over a period of time, toxins will be forced into distal connective tissue around muscles and joints, causing fibromyalgia, or into the cells, which can precipitate genetic mutation and ultimately cancer.
> 
> The immune system is stressed in three major ways. First is at the site of the intestinal mucosa. As toxins and food antigens brush up against the mucosa, the immune system mobilizes to neutralize the toxins. Normally, much of this work would have been done by beneficial bacteria, which have been destroyed by antibiotics. For toxins that make it to the mucosa, the body will tag them with a chemical secretory IgA (SIgA), which attracts macrophages and other white blood cells to consume the toxins. It is not long before this immune response is overwhelmed and depleted. This can be measured directly with a stool or saliva test for the intestinal SIgA level.
> 
> ...


----------



## Jessa Minnet (May 17, 2011)

Quote:


> Originally Posted by *bigeyes*
> _the FDA is a bought and paid for whore,_ and the medical community is only interested in keeping us sick and taking our money. If it's at all possible, I want that statement on my tombstone


My epitaph will say, "*I told you I was sick*."


----------



## Jessa Minnet (May 17, 2011)

Quote:


> Originally Posted by *supakitty*
> 
> Another question I have is how have people managed pregnancy with this diagnosis, was it worse, better, the same? I'm also having these feelings about not being able to care for a newborn when I am struggling so much right now.
> 
> -Laura


I did it. It was hard - very hard - but we all probably suffer in varying degrees, and mine has been pretty bad. My husband was there, but sort of added to the frustration - partly because I was not diagnosed and he thought I was just being dramatic about my fatigue. I guess my thoughts are: you just do what you have to do, and spend as much time as possible letting that baby know what it is liked you be loved - your only real job is to earn your baby's love.


----------



## Jessa Minnet (May 17, 2011)

Quote:


> Originally Posted by *Ruthla*
> 
> Are you suggesting that cigarettes do have a medicinal value for fibro patients? I'm not suggesting we all take up smoking, or that the risks outweigh the benefits, but this is the first I've ever heard of tobacco actually (potentially) having benefits.


Um&#8230; absolutely. As weird or contra-indicating as it sounds, yes. In fact, I STARTED smoking about 8 years into my FMS - roughly 2 years ago. After all, it IS a stimulant. Also the Native Americans used tobacco medicinally.


----------



## Jessa Minnet (May 17, 2011)

Quote:


> Originally Posted by *supakitty*
> 
> Here's a question, does anyone here have fibromyalgia and not have anxiety and/or depression? Mine seems to arise from the feeling of being sick and having no idea about what to do for it and if it will ever go away.
> 
> -Laura


I think I would if I weren't on meds - especially the Effexor. I hear bad things about it, but for now it helps.


----------



## zonapellucida (Jul 16, 2004)

Ah what a thread to read. So much information. Thank you all. I have been in severe pain for days and have Ulcerative Colitus in addition to Fibro. All this information is making the light bul;b glow. Time to visit the GI


----------



## Mom31 (Jun 11, 2011)

Quote:wow. i felt better when i started back to smoking... i never understood why


> Originally Posted by *bigeyes*
> 
> I just read in my adrenal fatigue group that cigarettes increase your cortisol production, and one of the things we do to fight adrenal fatigue is take cortisol or cortisonem because it helps our thyroid meds work better. So apparently it's 'normal' for us to crash when we quit smoking.
> 
> ...


----------



## StephanieAC (Feb 28, 2012)

Our children suffer the most! They can not see the pain or fatigue. It is not something that shows up on an X-ray or MRI. My life has shut down. My 3 yr old does not know what it is like to have a healthy mom. I have 3 other children who have watched the crumbling of my former self. There is not a medication or narcotic or procedure they have not tried on me. I also have Tietze syndrome and a list of other things. The medications alone are destroying my liver. At first I was in denial. Then there came a day where my body trumped my mind. Anyone who does not have this or have a loved one who suffers from it will ever understand what it is like or be desperate for a remedy.It is so hard for my husband to sit and watch his wife in tears from pain everyday. I have just been started on Lidocaine infusions. It is what they give cancer patients before they die. I am out of options and heard that the only thing that will help me is medical marijuana. If I could find it I would take it. Having a few good years left with my family is worth any price!


----------



## StephanieAC (Feb 28, 2012)

Amen and I do not think it could be explained or described any better than you have done here!


----------



## StephanieAC (Feb 28, 2012)

Quote:


> Originally Posted by *kblackstone444*
> 
> My Mother has it. She's had it since I was 12 or 13. My brother is showing some mild symptoms. Is it hereditary?


It is hereditary. My symptoms actually kicked in before my mothers. I am 33 and my life has been stripped from me.


----------



## StephanieAC (Feb 28, 2012)

Quote:


> Originally Posted by *bigeyes*
> 
> Quote:
> 
> ...


Quote:


> Originally Posted by *bigeyes*
> 
> Quote:
> 
> ...


Anyone who doesnt agree with you is simply in denial. I get script after script and here take this for the side effects of that and take these for the side effects of the medicine you take for side effects and the domino effect continues.


----------

