Scleroderma & Raynaud's UK (SRUK)

Localised Scleroderma

Hi there, originally I was diagnosed with osteoarthritis, then after a year I was diagnosed with diffuse systemic scleroderma, the consultants have now told me I have localised Scleroderma and they keep on changing my meds. It all started in my arms and hands and now it's all in my legs and feet. My skin is tight and painful I can just about bend my ankles and knees although I have seen some improvement in my arms and hands. My legs turn blue/red when I'm standing and feel as if they are going to burst. and it's the same when I'm sitting. But I am very fortunate as I don't have raynauds - yet! I take methotrexate to slow the progress and floexetine to improve circulation (early days on this one). My hair is falling out and I get days when my condition flares up, I cant sleep, and I've had to change my way of life completely. I try to be optimistic and make the most of anything I can. Hope you are all OK. Take care and keep cheerful. 😃😃😃😃

Roselda.

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Hi. I'm not sure how this has happened but it's very confusing for you! I had localised/limited with similar symptoms to what you described. Mine turned to diffused, diagnosed by bloods, in 2009, and in 2010 I suffered greatly resulting in the loss of my large intestine and colon. This took 9 hours and scleroderma 'masked' the symptoms which is why it took so long. I don't mean to frighten you but the point I am making is diffused scleroderma means it is inside your body. I think your consultant was out of order in what he has told you, unless it is correct, and from what you have said it is not. I would certainly challenge him/her on your next appointment. Can you imagine how you would have felt had you researched this online? Take care and try not to worry too much but learn to take each day as it comes, with a smile! Kim.

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Hi Kim,

Thanks for the reply. My differing diagnoses is because they come from 2 different Rheumatologists. The first one told me it was systemic the 2nd said it was localised and changed my meds. I'm due to have an echocardiagram and lung function test next month, so if it's localised Scleroderma why am I having these tests. I will be seeing the 1st Rheumy after Christmas and I will take someone with me as a witness for any further indecisions. Take care. Roselda

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