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About Deb1million

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    Maldon, Essex, UK

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  1. Hi Logan I have systemic scleroderma, and so does my cousin. Our dads are brothers. No idea of any environmental reason for this, I think it's genetic, as there are quite a few autoimmune conditions in our family. Hope your mum is doing ok. Regards Deb
  2. Sending deepest condolences to Shelley and her family at this sad time. Gene will be missed by many. Love and Thanks for all he did. Debbie
  3. Hi All, I have also recently been diagnosed with Achilles Tendonitis, and started physiotherapy last week after increasing pain since last summer. I'm on first name terms at the physio department, as I have bursitis in both hips, tennis elbow, stiff hands, frozen shoulder and of course its all due to the systemic scleroderma (thanks a bunch!) Ice is the best thing to relieve the tendonitis pain, but when the doctor says "try not to do too much" I was going to ask if they supplied domestic help and a chauffeur on prescription?!! Recently been diagnosed with Vasculitis after a b
  4. Hello Amanda I have only just seen your post, and am very concerned that you have had this extra worry. You could do without it! I'm sending you all my wishes for good news very soon. Thinking positively is a lesson you have shown us all. xxx
  5. Hi Amanda, I'm pleased that your lung results are slightly improved, though I wish you didn't have so many other problems to cope with! You really handle it all so well, and I'm certain that positive spirit is like winning half the battle with chronic illness. No foot ulcers for me, thanks all the same! Sorry yours are approaching their first birthday, we will have to give them a GOING AWAY PARTY! :emoticons-i-care: Take it easy, Debbie
  6. Hi Amanda, Sorry the ulcers are not behaving! They should pack their bags and go! I have been on pregabalin for over 2 years, combined with another called Cymbalta, for neuropathic pain. It has helped a lot, with no side effects apart from possible weight gain which may or may not be them (there is a long list of suspects for that - but I'd rather be cuddly than in pain!). I'm also on a relatively small dose pain patch for the joint pain, but these other 2 work well on my shooting nerve pains. Take care, and rest whenever you need to to make up for the nights of insomnia. May
  7. Hi All, I'd never heard if this until three weeks ago, too! I've also just been told I have cervical stenosis which is causing my arms to go so numb I can't drive more than a few minutes before my arms are totally numb. My neck is so painful all the time it gives me a headache. I've been getting strange wet leg sensations when my leg is dry. It has also affecting my balance and other things. I've been seeing my neurologist for monitoring of a syrinx (hernia/cyst) inside my spinal cord. This is separate from the stenosis. (Just my luck!) He thinks surgery on the syrinx is only
  8. hi Sandy Just wanted to add my good wishes for a speedy recovery from surgery and a great outcome. We are all in there with you! Your hair may even grow back straight - so you can ditch the straighteners! tlc Debs
  9. Hello Jean Did you get the results of the shoe inserts trial? I hope you noticed an improvement in the pain in your feet (as if you don't have enough else to cope with!) Best wishes Debs
  10. Well done, Amanda. I hope you rest and recover well. see you on saturday best wishes Debs
  11. hi Buttons Im hoping that the mylogram went ok, not too painful? Just to let you know Im thinking of you and wishing you all the best for good news. Debs :D
  12. Thanks, Shelly I am due to have the surgery next month, so I have to take it easy for a while. I can't pick up my lovely grandchildren, but they sure know how to scramble onto my lap! :VeryHappy:
  13. Hi Vanessa, Like you, I've not been on the site for many weeks. I've had to slow down as I've got an intestinal hernia needing a small operation, and its painful to drive etc. I don't understand the test results much, but I hope your hands improve soon as its no fun, as we need our hands for everything don't we! Take care, Debs
  14. Hi SandyB, I hope your shingles are completely gone very soon. And as for the gut and lung issues, are you on Cellcept or anything else for these? I hope your next appointment offers something to help your symptoms. And, for what its worth, my opinion as to why we don't get colds is that the sneezing etc is the body's immune system response to the cold virus, and most of us with scleroderma are on immune suppressants, so the response mechanism is 'switched off', so our bodies just let the cold virus in the open front door. That's how my doctor described it to me. I've been on various i
  15. Hello Lynn The UK subforum is often recommending people to request a referral to the Royal Free Hospital in Hampstead in London. I even remember a man coming down from Scotland to be seen by the best team, headed there by Prof Chris Denton. I was diagnosed with systemic scleroderma in December 2008, and also have multiple overlapping autoimmune conditions of diabetes, lupus, sarcoidosis, stage 3 kidney failure, hypothyroidism, Raynaud's, Sjogren's, dysmotility, dental bone resorbtion, sclerodactyly, glaucoma and autoimmune hepatitis. So you would think they would do every test on me, b
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