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Eve in Essex (UK)

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Everything posted by Eve in Essex (UK)

  1. I have coeliac and scleroderma, diagnosed with coeliac at age 5 and scleroderma at age 45. I have minimal symptoms of scleroderma, Raynaud's, calcinosis, and some minor stiffness in my arms. A gluten free diet will not cure scleroderma that's for sure, but if you have digestive issues it might be worth trying a GF diet for while to see how you feel. The important thing is that if you want to be tested for coeliac you must have a diet of gluten otherwise you will not evidence a reaction to gluten in your system when you have the tests.
  2. I had Raynaud's for about 2 years and suffered with tingling and pain in fingers, then hands then wrists. I had EMG tests twice and found no Carpal Tunnel problem. After the second test I was told it wasn't Carpal Tunnel but in fact it was Scleroderma, as my rheumatologist linked significant skin discolouration (Morphea), Raynaud's and pain in hands and wrists. I now have pain up to my shoulders and wake at night with aches and pains, but the tingling went away a long time ago. I am becoming increasingly weak in my hands too. I have been offered steroid injections to ease the swelling in hands but other than that I am told to take occasional painkillers. I won't have steroid injections as they were not effective before. I am told I have MCTD, and that this is better than having a specific diagnosis. Oh Good!
  3. Thanks for all your advice. I saw my dr yesterday. He says that all the major organ tests are fine so that's good. He has offered steroid injections for the hand swelling but I declined, as I have had this once before and the relief was very short-lived. I will continue to do my stretch and flex exercises, and take the occasional pain killer when it gets too bad. The weather turned very cold this morning for the first time this year and I had my first big Raynaud's episode for months. I am going to buy myself a wax heater so that I can do my own paraffin wax treatments at home. Cheers, Eve
  4. I was diagnosed in Jan 06 after suffering from swollen hands and Raynaud's and skin discolouration across my torso for at least 2 years. My worst symptom at the moment is the swelling, stiffness and pain in my handsamd arms, and the dryness and skin splitting on my fingers. I use moisturiser about 10 times each day. I know that this is trivial compared to some stories I read here. My problem is that my rheumatologist only seems interested in the potential complications around hypertension, rather than any actual problems I suffer now. I take Losartan to reduce my blood presssure, even though I have naturally low blood pressure already. In fact I have to take Losartan when I go to bed to avoid falling down! Does anybody get any treatment to reduce swelling and pain in hands and arms? I am seeing my rheumatologist this afternoon and expect to be put back on Nifedipine again for the winter, apparently to help the Raynaud's, but it doesn't seem to do anything except make my knees hot and my ankles swell. Ho Hum. Thanks for the opportunity to rant.
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