limb pain: Hey everyone Last week I... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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limb pain

3 Replies

Hey everyone

Last week I caught a virus and I had normal virus symptoms but also SSc just ramped up from pretty calm to:

fatigue (strong bout I managed to overcome in a couple of days)

super limb pain (up to elbows and knees) like my bone marrow is aching

Now the virus is gone and I have shaken the fatigue but I am left with the limb pain. It's so strong I can barely drive/type. I am really hoping this drops off and I don't have to go see my Rheumatologist because his only option is more aggressive medication (immunosuppressant last time made me feel horrendous).

Has anyone else found a virus/other illness has kicked their Scleroderma off and if so, did they find it settled back down again?

3 Replies
Suzyannayoung profile image
Suzyannayoung

Hi there, I have diffuse Scerledema , polymytosis ,raynauds , osterperosis and other things that come with it. I struggle with fatigue , muscle and painfull joint, bones all the time but if I get any viruses it completely knocks me off my feet and I really can't function. I am having a flare up the last few months and have had my prednisone and Anzathioprine put up to high dose, which I agree with you about about all the side effects. Have had chest infection last 2 weeks on top , uh! My ck readings are coming down so hopefully will have dose reduced gradually . Yes they do makes you horrendous but I feel as there is no choice as I nearly lost all my mobility at one point , ulcerated fingers that lasted months and would take anything not to go there again. If I were you I would go to my rheumatologist to try and get control over your limb pain before it gets any worse , it may not be even associated with your SSc , best to check it out .

in reply to Suzyannayoung

Thanks for your reply :) I'm 100% certain the pain is the SSc as it is familiar. I'm hesitating to go to my doctor because last time was more aggressive medication that actually made me sicker so we came back off. I'll obviously go if things don't settle. I'm just hoping you guys on here might have experience of things setting off but then settling :)

Suzyannayoung profile image
Suzyannayoung in reply to

Hope things do settle for you without anymore medication. Perhaps others have different experience so would be good to see replies . We really are ruled by these diseases , Good luck 👍

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