Scleroderma & Raynaud's UK (SRUK)
7,251 members3,437 posts

Would value your thoughts

To give a bit of background, I was diagnosed with discoid lupus many years ago but was offered no treatment and just left to get on with it largely. a couple of years ago I started to get a lot of lesions and am now on hydroxychloriquine. As I was suffering from all sorts of other symptoms I started to try and seek some care and to understand the condition. My bloods always come back ok and everything else is dismissed as a result, I feel. Over the last 6 months things have developed and my hands are so bad. They are swollen, the skin has thickened and tightened and they are all cracked. I have also developed red patches on my face some of which are just purple dots but some are in clusters of burst blood vessels. they are not bad but they signal something going on surely? I have symptoms of Raynauds too and my dermy just said "Oh that is just Raynauds". Nothing further said. When I have explained all this to my dermatologist he said about the red patches " oh it's just some localised thing" and suggested my hands were eczema. I have had eczema and this feels very different. I can't seem to get anyone to look at me as a whole person and listen to all the ailments that have been bothering me all my life. My hands are really getting me down and I'm concerned about the swelling. They are either deathly white at the tips and numb or they are burning up, tight, red and itchy and swollen. I have a high pain threshold but they are very painful at times and I am starting to be restricted in what I can do. I have seen lots of pictures and heard descriptions on this forum that match me exactly and whilst I do not want to self-diagnose, I really don't know where to go next. I was even wondering whether there is a private specialist I could pay to go and see but I am unclear on whether any diagnosis this might result in would be dismissed by my GP/dermy. Has anyone else gone down this route? Would really value any insight. many thanks, L x

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Insist on a Rheumy appointment and them once there INSIST on setting a SSc specialist, even if you have too travel.

It sounds a lot like my symptoms and although I wish for you it's not SSc it does sound like it's likely is 😕

Good luck xx

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Thank you for taking the time to respond. Will be on my most insistent come the new year. Wishing you a very happy christmas xx

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The more you read and research reputable sources, the better off you are. Niacin helps by dilating your blood vessels in your hands and feet. I take 500 mgs of Twin Labs brand, up to five times a day, available at the "Vitamin Shoppe" . Hang in there, it works. Try some pocket hand warmers too.

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Thank you - will look them up xx

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