How did your systemic sclerosis start? What were the early symptoms?

I have rheumatoid arthritis/inflammatory arthritis and Raynaud's. I have only just been diagnosed. My consultant thinks I have another autoimmune disease too. I would be very interested to hear about other people's experiences of Raynaud's which developed later into scleroderma as I think I have some symptoms of this. I would especially like to hear about blood test results and the course of people's scleroderma development over time.

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  • I was not diagnosed for a long time. People where very ignorant of Sclerodorma and Raynaud, though known by some, was neglected until some thirty years ago. The fact that I had periods of total exhaustion were interpreted as depression which I knew I did not have, but was referred to a psychiatrist. He was very nice and we had pleasant chats.

    But I have had trouble with my guts for a long time and an irritating cough which I now know to have been the result of reflux. Since I have been recognised as having Raynaud and Scleroderma I have been tested each year for my lungs and my heart in case there was some involvement. An investigation of my nail beds showed that I have Raynaud's.

    There is no cure for scleroderma but there is plenty that can be done to make life better and enjoyable. I have found that instead of giving things up it is best to do as much as possible so as to be distracted from the symptoms.

  • I have reflux too. It presented with swallowing difficulties and pain when swallowing which felt like a stitch. The reflux was confirmed with a barium swallow test. The consultant has not seen an attack of Raynaud's but diagnosed it from photos and my description of what happens. I have never had a nail bed investigation but might ask if it's possible.

  • I think my first symptom was sore puffy fingers and I felt ill.Then I got tight skin- hands, arms, neck, torso everywhere really- didn't know what was happening at first and it eased slightly (or I got used to it) somewhere round the 5 year mark. I soon realised that my stretch and joints were being affected too. I have very crooked hands, digital ulcers and heartburn/acid reflux. The Raynaud's can get me down at times, especially in work when I feel I can't do too much to change the temp.

    Don;t really want to give you a whole set of symptoms which may never happen to you. I don't feel disabled and I am not registered as such; I work full time as a teacher and I have two young kids. I love life and although I have lost some confidence in my body, I tackle things head on.

  • Hi Naomi1 - if you would like some more information on Raynaud's & scleroderma, you can request an info pack from the RSA by emailing info@raynauds.org.uk

    This pack gives information about the kinds of tests that hospitals can do to try and diagnose scleroderma.

    The same information is available to download on our website raynauds.org.uk

    We can also supply information for Health Professionals if this would be useful.

    All the best,

    Hannah

  • ANA blood test will come back speckled with scleroderma.

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