jillylin9 years ago

Hi Lotty,

I have muscle weakness myself and was told that it can occur with Fibro. I don't have muscle wastage..well not too much. I was given physiotherapy but did not find it much help to be honest. I do find I have good days and bad days with it. I used to be a ballet dancer and this has stopped me dancing. And , again for me, I was told it wasn't anorexia related.

Hugs

Jillyxx

lottybear in reply to jillylin9 years ago

hello thank you that makes sense, as its only happened in the last couple months. i was a dancer too, miss going i used to dance everyday, but cant anymore. do you find anything works or helps, or is it just a case of getting used to it, hugs

x

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jillylin in reply to lottybear9 years ago

Hi Lotty,

I am still trying to get used to it. There is not much else we can do. I do try to exercise to keep the muscle strength and swimming does help a little.

Hugs

Jillyxx

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bbstport9 years ago

i too suffer this and it was my physio who told me this and gentle exercise is important to re-build the strength in muscles I cannot get up off a chair without pushing myself up with the arms what has your physio said ?

lottybear in reply to bbstport9 years ago

hello, i have been referred to a physio, been told that i could be waiting months, the physio dept have not even got the referral yet.

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bbstport in reply to lottybear9 years ago

who referred you ? do you have an occupational therapist ?

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agtf19 years ago

Hi, I've had muscle weakness in my legs and periods when I've had flares and you could see that the muscle had dropped and weakened. Physio gave me very gentle exercises which have improved the muscle tone, but still have weakness. X

lottybear in reply to agtf19 years ago

hello, glad physio has helped, as it can be quite scary especially when im walking and think my legs will give way.

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Reykua9 years ago

Hello Lottybear,

Just a quick note to say a really big THANK YOU for raising this issue. I've also suffered with this for the past three years or so and although I was told it was part of the Fibro by the Rheumatologist, it wasn't included in the symptom list and nobody else I spoke to seemed to know anything about it - not even my physio - I was diagnosed with Fibro in April of last year.

To describe the sensations; I'll usually be walking along and will get a sudden spasm in my legs (both legs), almost like leg cramps at the back of my legs. The spasm usually holds for a few seconds during which I'm unable to move and have to stand stock still with the pain, then without warning, there's a sudden release which also brings with it a total loss of strength and muscle tone in my legs. The sudden weakness means I either have to grab onto something to hold me up or end up on my knees. This has put a fear in me of walking outside my home and as much as possible, I tend to stick close to walls or railings. To recount two scary incidents, I've slipped down a stairwell in a block of flats and had to be assisted across a busy road by two concerned (and lovely) fellow pedestrians after the traffic lights changed and I'd experienced a spasm in the middle of the road.

I've recently been insisting that my doctor refers me to a Neurologist to double check and rule out the possibility that I might have MS as it's apparently one of the symptoms. He's agreed to do so once I've been signed off by the Rheumatologist so I'll keep you informed although I'm feeling a little embarrassed about insisting on these additional tests now that I've read your post.

Thanks again, you've made my day.

lottybear in reply to Reykua9 years ago

hello, hope you don't mind i sent you a message.

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haribo369 years ago

Hi there,I do find that my muscles are quite weak and at their worst I can barely move around my tiny bungalow but at other times I can go out.I don't have it like yourself where I collapse but when Iam walking sometimes my muscles feel wobbly and I have trouble with my balance.Hope you get some answers soon Hun xxx

lottybear in reply to haribo369 years ago

hello, thank you for replying thats what i get, so it seems like mine is fibro related

x

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lottybear9 years ago

thank you for the replies, there just didnt seem much on the internet about muscle weakness, it seems more focused on muscle pain. sorry i can only blamed it on being diagnosed in august, im still finding it hard to deal with.

also i was worried whether it was ms, as i have eye problems, but the rheumatologist checked my knee reflex and said i didnt, i didnt think you could tell if someone has ms by checking a knee reflex

x

Hidden9 years ago

Hi there Lottybear me too.

The rheumy said the same to me I know that mine is partially down to the fact I couldn't get any physio for 6years until I was diagnosed because they were afraid to cause me any damage without knowing what they were treating

I couldn't exercise either so I only had walking but I also fall over a lot so have had long spells off my feet.

I have had a course of hydrotherapy and am waiting to go back.

Whether the muscle wastage is because of fibro I cannot say but I would say it has contributed to mine.

I haven't had anorexia but was athlete for a long time involving track, cross-country and road running. I believe from my own circumstances that muscle wastage began when all that stopped because I wasn't exercising to the same extent anymore. I was still very active just in a different way through the manual work that I did and going out clubbing and dancing. Dancing was exercise and a fantastic way to let off steam for me.............. ....................I do miss it!

I have spoke from personal experience but I hope it helps you picture your own circumstances. When it comes to GP's and consultants sometimes we literally do have to spell our feelings out so write it down the way you have expressed it to us and approach them again. What have you got to lose? Its your body hunny and no-one knows it better than you, describing it and what's happening to it is so difficult but becomes easier with time.

Be strong and positive...............

,................sending you healing fluffies

xxxsianxxx