Anyone with scleroderma have this? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Anyone with scleroderma have this?

cocobella profile image
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Hi everyone. I have raynauds. I'm 30, was diagnosed at 24. Since then I have had a total thyroidectomy, I now have lichen sclerosus, fibromyalgia, severe urinary strictures and interstitial cystitis and am under investigation for my heart as I have been having arrythmias, and also gastro problems and am having a colonoscopy. So not an easy time.

In past three years I have noticed significant changes in my hands. I have pitting and pruning at the tips. Then have these indents on my palms when I move my thumbs.

I actually think my palms and fingers look really old.I do get swelling in them also.

I have thought I have scleroderma for a while but my ANA was negative so gp didn't pursue any further.

Any advice on this would be great thanks.

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cocobella
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Richmi profile image
Richmi

I am 64 and have Primary Raynauds. I have found, through this wonderful blog, that taking 20-25mg of Sildenifil, the active ingredient to Viagra, has helped. I take one pill in the morning and one in the late afternoon. As humorous as it may sound, it does open up the capillaries in the fingers and toes. The outbreaks are cut by over 50%. I recommend at least trying it.

shellyhelpme profile image
shellyhelpme

I would recommend getting your dna tested. Drs never listened to me when I was young.

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