Scleroderma & Raynaud's UK (SRUK)
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How do you know if it's scleroderma?

I have Reynaud's, probably for a few years but most noticeable the last couple. Generally more of an annoyance than anything, and my doctor didn't seem too worried when I saw her last.

But, this winter seems to have been worse (more frequent attacks, more days when my fingers just stay kinda lukewarm). I'm starting to get worried about scleroderma. I don't have classic skin symptoms, though I've always had dry skin on hands and feet and scalp, especially in winter. I have a long history of not-too-severe irritable bowel-like symptoms. And although I've been running regularly for a few years, this winter I feel like I have days when I'm more out of breath than I ought to be during a run. No chest pain, still recovering quickly - doesn't seem cardiac.

Concern: could all this taken together add up to scleroderma of the systemic kind? And if so, is there any point in seeking medical advice, since there's no real treatment? I'm afraid I'll just wind up on steroids and be worse off (in terms of how I feel/what I can do) than now. As long as it's not actually debilitating, am I just as well off to try not to worry about it until it gets worse?

3 Replies

If you're worried it is always better to look into it - there's lots of different treatments for scleroderma which treat the symptoms and improve quality of life. I know it's a scary thing to be told you have but I'd be so much more scared of having it and not knowing!

It doesn't sound to me (although I'm not qualified in any sense!) like you've definitely got SSc but I'd want to check my lungs out for anything if I felt they weren't functioning as well/I'd noticed a change.


Go to your gp and request a referral to a rheumatology specialist. Like you I suffered with Raynauds for many, many year and the gp didn't seem to be helping. When I did get a referral which my gp at the time happily made for me, it was to inform me that I have Limited Systemic Sclerosis (Scleroderma). Since then I have been monitored over a period of years and about two years ago was diagnosed with Pulmonary Hypertension (borderline). This was because I told the gp and the specialist that I was breathless on exercise, more so that usual and the monitoring started. It took about 5 years for it to get to the stage it is at now but I do feel that people are looking after me and I don't worry about it like I used to.

Keep exercising and eating healthily and it helps a awful lot.


You need to see a specialist rheumatologist for a definitive diagnosis. If they suspect scleroderma you will have tests like nail capilloroscopy, Pulmonary Function Tests blood tests to establish if there any relevant antibodies; kidney function, skin examination, possibly echocardiogram, ECG and CT scan. Other possible clinical signs are Raynauds, telangiectasia and calcinosis (Verified by xray). Oesophageal problems are common so a Gastroscopy or barium swallow may be indicated.

I think these are now the accepted guidelines for diagnosis

I score 12 on this system

Hope this helps


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