Does anyone have SLE & polymyositis.: Just... - LUPUS UK

LUPUS UK

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Does anyone have SLE & polymyositis.

Renu profile image
Renu
12 Replies

Just wondering if anyone has polymyositis and how you are coping with it. I struggle more with this muscle disease I think then SLE?

12 Replies
Sher78 profile image
Sher78

My muscles, tendons have gone 2 pot the last couple of years. Personally, I have found decent pain relief and exercising 2 build muscle strength (on the odd occasion I feel up 2 it!) really helps. Quite often my palms will go without warning which can b an absolute pain as I suddenly lose my grip & drop everything lol! Try insoles if u have problems with u're foot muscles and massages help. Most importantly keep well rested. Sorry I couldn't be of more help.

Renu profile image
Renu in reply to Sher78

Hi Sher78,

Thanks for your response. Polymyositis is so rare I wondered if anyone from Lupus UK had it and could advise me how they coped with it. I am not doing too badly considering because I am fighting it and trying to remain mobile through swimming and yoga and positive energy. You are quite right massages help. My main muscle weakness is in shoulders, neck, hip and thighs. When I stand still my legs are so weak that they slowly sway from side to side. I cannot walk for long or stand for long. However, on the positive side, I am still "functional" and able to walk a short distance. This condition is progressive which is why I thought it would help to see if anyone else suffered from it and to see how they were coping with it, get some tips etc.

Renu

Sher78 profile image
Sher78

Must admit, I haven't had the 'sliding' legs yet, my just tend 2 suddenly give way & I end up in a heap lol. As hard as it sounds, we've just gotta try and stay positive I guess :0/

Renu profile image
Renu in reply to Sher78

Hi thank you for your response Sher78. All the best!!

Renu

Sher78 profile image
Sher78 in reply to Renu

no problem my lovely, sometimes it's just reassuring 2 hear that we r not alone, although it often feels like it.

Renu profile image
Renu in reply to Sher78

Hello Sher78. Thanks for your comforting words. I feel really good today. Went and started a yoga/pilates course followed by a swim. It gave me a great feel good factor and I think the yoga/pilates was beneficial. My body seemed to cope with it so I will stick to it and keep smiling.

Renu

I have SLE and Dermatomyositis, which is very similar to polymyositis but also involves the skin. After reading about it, I think I suffer more with this and APS than I do with SLE.

x

Renu profile image
Renu in reply to

Hi didds82 thanks for your response. I totally agree it is more of a nuisance than SLE. Today I went to a yoga/piltates class and it was great! It wasn't as harsh on the muscles and joints as I had expected. It is a good way to strengthen the core. I think I will stick with it. It certainly put a smile on my face because I worked my stomach muscles which I hadn't worked since having the kids!! (years ago!). It definately got the body going!!

Take care

Sher78 profile image
Sher78 in reply to Renu

Ideal! That's the best thing u can do, strengthen that core cos it all starts from there. Gonna start going swimming again, once I've managed 2 shift a few pounds & squeeze in2 my bikini. Always felt brilliant after a swim, mind u, takes 4ever just 2 do a length as gotta keep stopping 2 catch my breath & rest my arms lol!

Renu profile image
Renu in reply to Sher78

Hi all the best with starting your swimming. All I need to do is tone up (especially steroid beer belly!!) and I will be happy. Almost got back to weight prior to taking steroids so things are looking up and I am starting to feel good about myself having come off steroids after two long years. whippee. Take care. Keep smiling. Yes, feeling after a swim is great. People tease me n say are u training for Olympics, little do they know that I have muscle disease and SLE. It's great the disabilities do not show in the pool. I feel "normal" in the water when I swim !! Been doing it two years now.

Renu

Hi.

I'm just coming out of a massive flare that lasted for 7 months and can really feel that my stomach, back,abs,chest muscles have been affected. Am planning on trying the gym again when I come off steroids to try and strengthen them as much as I can, think I'll try a bit of yoga as well.

x

Renu profile image
Renu in reply to

Hi

All the best with coming off steroids and starting yoga. I came of steroids end of July after two years and coming off was the best feeling. I am now trying to get my body back into shape and tone as much as I can. I am now almost back to normal weight (before steroids) and feeling happy with my weight. Still have to burn the beer belly affect of steroids on tummy though !! I am getting there with swimming. It's a great feeling. I wish you all the best and can relate because I have been there and done it.

Renu

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