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geordiegirl

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About geordiegirl

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  1. geordiegirl

    Hi

    Hi Kira, I really identify with all your hand issues and your general confusion. My fingers vary between bright red and quite swollen and hard to bend (if I'm slightly warm or exercising), white and numb (if I'm even slightly cold) and on the rare occasions where the temperature actually suits my body they still have shiny red patches from where I had really swollen lumps on them this winter (diagnosed as vasculitis by my rheumatologist). Never thought I would experience 'hand envy' but I do find myself gazing at other people with normal fingers and thinking, 'were mine ever like that?' !!!! I have been taking plaquenil, but it hasn't made a lot of difference yet (after 3 months). I also have aches and pains in my hands and legs and an ongoing sore hip now, but it's so hard to know what is related to connective tissue disease and what is just a strain from running at the gym!! I haven't really got any terrific advice...but I do think moving your hands helps, I always do it when they are swollen. Just wanted to let you know that there are others in the same undiagnosed and frustrated boat! Take care, G
  2. Hi. OK that worked so here goes. The swelling in my fingers has subsided, as it tends to, it seems to go in cycles. I'm left with red and slightly shiny skin where the inflammation was. Now wondering when the swelling will start again! I may take the rheumatologist up on their offer of a steroid injection if they are that bad again! I guess I'm looking at other diagnosis because I can't find anything that matches my symptoms anywhere. The rheumatologist has diagnosed vasculitis at this stage but she has also mentioned connective tissue disease and autoimmune disease including lupus, scleroderma and UCTD. I don't know why I keep thinking scleroderma, probably because I have raynauds and problems with the skin on my fingers and I can't find anywhere else where I fit! (I'm a bit of a control freak so need to know these things!) I think the point about not getting too hung up on the classification and treating the symptoms is a really good one. It seems this whole area of connective tissue disease is a very complex one with loads of crossover...I very naively thought I would see a rheumatologist and they would give me a diagnosis and treatment and that would be that! This seems like a great site with loads of positive and useful advice. Thanks again for the advice which you gave me and I hope everyone reading this has a great day, Gx
  3. Thanks so much for the helpful replies, I've been away for a few days so I'm just reading them now. Before I respond properly I need to see if this actually sends as have just written a full relpy and was then told the link was broken, aaargh!
  4. Hi, I'm really just looking to see if anyone has experience anything similar to how my symptoms have progressed over the past year and a half because I can't find anything anywhere so I'm very confused about 'what I've got!' Briefly, I've had Raynaud's and poor circulation (cold extremeties) for as long as I can remember (I'm 36 now) but it was never really a big problem for me. Then last winter I started developing painful swollen lumps on my fingers which came and went (took about 2 months to go) but my skin was slightly discoloured where they had been. This cleared up by about April and things were normal again. But this winter the finger problems have came back with a vengeance. My rheumatologist diagnosed vasculitis with slight neutropenia and prescribed plaquenil (hydroxychloroquine). But two months after taking starting this my fingers are worse than ever. Lots of red swollen bits and two of them in particullar I look like I've got burns, they are very swollen and tight and hard to move. This is only at the top of my fingers over the top joint although it does appear to be spreading. I'm starting to find I can't do things with my hands as the lumps are tender. When you press the skin you can see the red inflamed blood vessels underneath. Also in general my hands go red hot and swollen when I am warm or when I exercise (and obviously white and numb when I am cold!). I don't appear to have any other symptoms as yet and I know all my bloods were okay apart from the white blood cells and some inflammation markers. My rheumatologist said originally she didn't think scleroderma but I have always thought it was and now I feel even more sure as my fingers are getting worse. Anyone experienced anything like this? Not really sure if I want you to say yes or no!!! I am demented with not knowing what is going on! Thanks for any replies, G
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