I was wondering if anyone else was having the same problems as me?

My consultant discharged me from his care 18 months ago, after 6 years of seeing him, as my scleroderma had stopped progressing. However, 18 months later, I'm struggling with walking too far, bending my knees, doing anything even slightly physical. I still have fatigue, but normally with 9/10 hours sleep at night, I can still work full time. I'm a hairdresser so I have to stand all day, use my arms (which are really painful), hands etc.. I have no skin involvement. I was wondering if these are more symptoms of my scleroderma and I should contact my old consultant? Or wether im just being a lightweight? Im only 43, but I feel 80! Xx

7 Replies

  • I would ask for a new referral - did your consultant say to get in touch if symptoms reoccurred if you were discharged you May have to go back through your GP. Regardless of which Route you take they sound like rheumatological symptoms that need checking out - your GP could do some initial blood tests in the 1st place which could point you in the right direction.

  • Yes, he said to call his secretary if I needed to, so I think that's what I'll do. Thanks for replying, I feel completely on my own with this sometimes. 😊 X

  • Hi,

    I was diagnosed September 2014 with Myosits (connective tissue disease), it took hold of me very quickly, I was walking one day then was unable to walk and ended up in a wheelchair. I was told that I had also developed scleroderma as my hands curled up and all my skin peeled. Fortunately, I had a very good consultant rheumatologist (he trained at the Royal Free hospital), who was so helpful with his team trying various drugs while I was an in patient for 8 weeks. I have given up using my wheelchair and make sure I do my exercises to retain my mobility.

    My advice is to go back to your GP and get referred back to your rheumatologist.

    Good luck.

  • Hi there, I have been showing signs of scleroderma for over 1 year. My Dr upped my anti deep twice saying it was anxiety. I changed my Dr and blood tests showed no anti nuclear cells. I have been referred to a joint spec for an urgentl app which is in may. I can now only shuffle to walk and fear my legs are going to collapse on me. I can't use a crutch because my hands are too painful. I can see the thick white lines beneath the skin around my joints, especially knee caps. Sorry to hear you ended up in a wheelchair. Is it possible to be more mobile again? It sounds like you had a breakthrough with your treatment. Keep strong

  • If you were diagnosed with confirmed scleroderma, you should never have been discharged from regular, ongoing care. Get a new doctor/consultant, and ask for a specialist in scleroderma. Scleroderma is a progressive, complex, serious disease with no cure. With attentive care by a true specialist, it can often be effectively managed over time. Early and prompt intervention for problems as they arise is critical to preventing or controlling internal organ damage. You should be getting six month screenings for lungs, heart, kidney, and skin changes. Have you had antibody testing? Even if your consultant advised you to call his secretary if things changed, that reveals a lack of knowledge about this disease. You need to be assessed and monitored by a specialist who sees scleroderma patients on a very regular basis. Treatment is tricky and complex, and changing all the time. A general internist or rheumatologist simply doesn't have the experience and knowledge to optimally manage scleroderma. Do you know what form of the disease you have? Limited or diffuse? The associated antibody you likely tested positive for? And yes, the symptoms you are describing are part of the picture. What other symptoms have you had that contributed to your diagnosis?

  • Hi, I've had Scleroderma for 16years and Raynauds for 18. I have gone through periods were I have been stable but I am still under my consultants. And I think that they were wrong to discharge you from there care. This disease is horrible and they know what the future holds for us. I think you need to go back and see what they say. They should of at least have been seeing you once a year.

    Hope you get the care you need.



  • Get a second opinion. I agree with the others, you should not have been discharged. Go back to your GP and ask for a referral to a specialist, this may be to another hospital to which you may have to travel but it is worth it. A true specialist will know which tests you need and also will ask the right questions. You will then begin to see the jigsaw pieces fitting in properly, I know I did when I finally found a true specialist in the condition. It is up to us to keep pushing the doctors as a lot of them out there have no idea what we suffer from and what exactly Scleroderma is and how it can affect us.

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