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Living With Fibromyalgia - Online Support Group

Muscle Wasting From Fibromyalgia

Thank you all for the warm welcome. I was wondering if anybody out there has had significant muscle wasting with their fibro. I read quite a bit, and there is mention of muscle atrophy, but they attribute it to dis-use (it hurts, so I don't move kind of thing). Not the story for most of us I bet. I have been a massage therapist for over 14 years and move my upper body especially everyday. My sister said laughingly - maybe you wore your muscles out! Strange thing. The right side is the only side affected and from my eyebrow to the top of my foot to the muscles in my big toe. I just wondered if anyone else has gone thru this.

Thanks for letting me go on about my muscles!

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I do not know about the muscle wasting. I just wanted you to know my massage therapist has been a wonderful help to me and I admire you greatly for doing this.

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I don't know if its what you're experiencing, but for a time my right arm (hand included) felt significantly weaker than the left. I went to a physical therapist and found I had thoracic outlet syndrome. He did his "thing" and I made sure to do the exercises he gave me, and my arm started to feel stronger. Maybe a trip to a PT might help. Hoping you feel better soon...

-rosie

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I have had significant muscle atrophy as well as weight loss. I had always attributed it to not being able to work out like I used too. Both sides of my body are affected. Very depressing, I used to work out 6 days a week. Now I'm lucky if I can go for a walk in the evening!

I have only noticed this lately when cleaning horse stall and playing with my 3 month old grandson my arms start to fail me. I do yoga at home almost every night but my strength just isn’t right any more. I have also had slight weakness on my legs.

I don't know what's wrong with me. Six months ago, I had really bad spasms and new issues that showed up in my calves. I started taking a muscle relaxer baclofen, and my calves shrank. I think now, that it's possible, that they were larger than they were supposed to be. So I have to wonder, if it's not always that the muscle is wasting, but that the electrical was causing a larger muscle to begin with.

Another thought is, maybe another muscle is more intense, so you use it more than you do the muscle that's shrinking.

Just my own thoughts about my own body. I have more problems with my left than my right, and I'm right handed. It's possible I do use my left more than most right handed people do.

As I am reading everyone’s answer, I thank you for asking the question. I was diagnosed with fibro 8 - 9 yeTs ago. 6 months ago I had a liver transplant and lost the use of both my legs for well over a month. I was transferred to a rehabilitation centre to re learn how to walk again, which I did. I am finding that the longer the time passes the weaker my right leg is. Although I am walking very well, my balance and strength in my right leg is not doing well at all. I am I’m the processs of attending a 6 wk managing pain workshop and have made a commitment to walking so I will keep you posted. I do believe if you " don’t use it, you lose it".

Are you talking atrophy or muscle weakness/fatigue? Atrophy from my understanding generally comes from misuse. I had that when I became bedridden the first time - think I might have recovered what muscle I had lost before my health crashed again last year.

But I have muscle weakness/fatigue on top of that. It was one of my first symptoms to develop. I was having severe panic attacks (with a rare symptom of muscle spasms - looked more like a seizure, but wasn't) after every episode I had a very difficult time walking. When I start to over do it or get fatigued it's almost always the first place I start having problems. It's spread to my arms during this latest flare-up. I have to be more careful than ever before or my muscle become so fatigued I lose control. Which does something weird to them, when it's gone too far they get almost spasmatic on me. I've learned to try and just relax at those times, but they can still jerk a bit and have a weird feeling I can't put a word to - like some part of brain realizes the nerves are responding right and fights to regain control. If that makes any sense. Rest (sometimes for an extend period of time) is the only remedy I've come across thus far. I hate it! When it's really bad I can't even feed myself - my husband was around every time so it hasn't been a problem and now that I'm aware of it I take extra care to avoid it.

How you describe it though almost sounds like peripheral neuropathy and that might actually be a separate issue from atrophy or muscle fatigue.

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Welcome aboard. I surely thank you for bringing this subject up because I haven't had the courage..don't know why!

I have very significant muscle waste...both in my upper arms and my thighs...all since the dreaded fibro has progressed.

My Dr. says my muscles have atrophied due to dis-use. I would say that is the case for me because I'm always just too dang tired to do much of anything. Then, of course..those ONCE muscles are very weak making it nigh impossible to exercise...even a bit. I went to a massage therapist and she suggested swimming...or at least light exercises in the water...but now I'm too embarrassed to be seen in a bathing suit. A fibro friend of mine says 'we' must look for a bathing suit that covers both the arms and legs!!!!!! Just to let you know....my problem started with just one side, then within a few short months encompassed BOTH sides.

I hope someone comes up with an answer for BOTH of us....and whomever else is having this same problem.

Geranium

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Never heard that but a recent study showed that creatine increased muscle mass by 10% in those with fibro. I'll take 10%! Have been using it before my AM workout with good effect, I think.

I've had a lot of fibro weirdness in the last 25 years, single side muscle weakness is not one. You are sure it is FM?

I used to lift weights. Then I went to free weights at home. I got compliments on my on how tone I was all the time by men and women. Since I had to retire, my muscles have atrophied so badly. I can’t even lift 2 lb. weights. It just hurts and knots my neck, shoulders, back too much.



I was only affected on my right side also until earlier this week. The pain has spread to all over now. I am nothing but knots. Mjones, I hope this helps you. Gentle hugs.

I would love to get more massages-wish insurance paid for them.

My cousin is going on almost 15 years with his liver transplant. Best wishes. Gentle hugs.

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Don’t know if this is significant but I ended up in hospital last year with a suspected stroke…eventually it got the all clear…no stroke…but have been left with significant weakness on my left side.

I have muscle loss in all parts of my body. I used to be able to jump on my treadmill and go, now I cant do that because it uses all my energy. So I try to do some moderate exersizing, but i can fell the difference as well as see the difference. :(

i dont know if it is my fms or what but i have decreased strenghth in my right side,thought i was having mini strokes.gentle hugs and recovery.

i am having alot of problems finding a doctor who really is knowledgeable about fms.my dr is compassoniate and kind but does not appear to have much info. also i am wondering if there is a chat room,i am getting lonely and frustrated since i stopped working in feb.i moved from fl to ny to live with my son due to no income........i have been denied 1x by ssd.they agree i have fms and assorted by products of it but i can still work.i have been dx since 92 and just stopped working.i try to walk and do what i can every day but feeel like this is the worse and longest flare up ever.will it ever stop getting worse? well thanks for letting me vent and i would appreciate any answers u could give.

mamma55

This is from NfmCPA magazine....

Prognosis:

  • The course of the illness varies greatly. While symptoms tend to wax and wane, most FM patients tend to improve over time with a multi-disciplinary team approach including patient education about fibromyalgia, self-management tools, aerobic exercise, behavioral therapy and pharmacological therapies.
  • Fibromyalgia sufferers should be reassured that although the condition is painful, it does not damage tissues; appropriate treatment and lifestyle changes can help patients manage the illness successfully.

So no it does not damage tissues...best thing is to start moving and/or getting massage!!

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WOW....!!! totally amazing that if only us FM people had just read the NFmCPA magazine as you have pointed out to 'us idiots'...we would be so educated/informed about our own 'disorder' that we could have cured ourselves...OR at least be told how. Now..I am wondering (as I'm sure many others are) WHY is it that my/our Dr.'s have not found this information that you have?? I'll tell you MY opinion...that being you have just happened upon a LINK that says 'the prognosis theory' that you have stated.

That does NOT mean it's true...it's just another 'idea' regarding fibromyalgia & the accompanying CFS. Even a person just one sandwich short of a picnic..would know/understand that 24/7 pain is def~~ going to cause CFS...which in turn is NOT condusive to FM people to 'start moving' etc..!! Of course 'we' move--just not like we once did. THUS..of course we are going to note damaged tissues & muscle atrophy.

Must admit...posts like this make me ever so annoyed/angry & downright insulted. Why insulted???---b/c the POST is just someone others opinion.......NOT an actual FM sufferer.

Amen. **if my comments tick you off...you deserve a verbal assassination"...AND if you really think about it in all honesty,,,you SHOULD (?) agree.

Just my humble opinion....hmph

Geranium

Well stated.

I believe most of us experience muscle atrophy from being inactive and not using the muscles. Mine got worse after my car accident injuries. I had injures on the right side but my left side also started to hurt as well from not being balanced evenly on both sides. I was compensating for my right side with my left, so the left side took more burden. My kinesiologist doctor told me that neurological problem can cause weakness on one side.

REALLY? Where are they getting their info?? from people who 'think' they had FM? I've met some people who thought they had FM but miraculously recovered in a short period. Some people tend to compete with others, so if you tell them you have FM, they will also say they have pain and fatigue.

I have some damages to my muscles, tendons, ligaments. My injuries do not seem to heal, either. Aerobic exercise is NOT good for FM. Drugs also don't work. If this statement is true, why are so many people disabled for decades??

I agree with Geranium. Reading something like this written by someone who makes up a fake prognosis makes me angry.