Scleroderma pain lessening or disappearing?

Three years ago the all over excruciating unbearable pain came on like a ton of bricks and stayed for 2 1/2 years . I was told I had Systemic Scleroderma in June 2016. I have developed the Acid Reflux/LPR badly and my fingers and hands are still very stiff BUT the 24 hour Excruciating forearm, hip, leg, neck and thigh pain/stiffness/ cramping that I've had for 2 1/2 years suddenly has went down from 9-10 to a 4-5!?!! It is crazy.. the pain 1st appeared in forearms, then front of hips, neck, lower back and thighs and now it seems to be lessening in that order. I imagine this is only a short remission but in the mean time I am doing acupuncture 1-2 weeks and seeing my Rheum Scler Specialist at UCLA tomorrow afternoon. I know the LPR/reflux is very bad and am now on 2 different meds along with taking probiotics, Aloe and trying to adjust to strict low acid diet. I am trying to make most of this time but I have a feeling it's going to keep changing and get worse but trying to keep positive. Hands and feet feel tight and stiff.

Anybody else experience the pain going into remission or disappearing?? I don't doubt that it will now just morph into a new symptoms in interanl organs, hands, feet and hopefully not face but so scared. I will repost after Dr's appointment.

3 Replies

  • I've lived with SSc for 6ish years, tbh I think the pain comes in cycles. Quite oft the changing seasons dictate different types of pain and like I said in cycles.

    If I were you I'd now dwell too much on what is yet to come, and enjoy any kind of relief you're experiencing. It might morph how you think, it might not. Try to do things now that you haven't been able to because of the pain, is my advice.

    Good luck.

  • Hi Anita

    I was diagnosed with diffuse scleroderma in 2005. Whilst it was in its acute phase I had a lot of pain and my skin was very tight. I was prescribed mycophenolate as well as drugs for hypertension and acid reflux. After a year or so the pain subsided and the skin softened. I believe this can be a normal progress of the disease. I still get odd aches and pains but not that all encompassing pain. I have a number of other issues to live with as we all do. I hope your pain will subside and remain so.

  • Glad to hear your pain is lessening. I, too, had the same thing. It all started in 2010. A couple of years of aches and pains all over the body, which they put down to rheumatoid arthritis. I was put on methotrexate which after a while I could not tolerate, then azathioprine which brought me out in a rash eventually. I was also on steroids. I was diagnosed with scleroderma in 2013 by Chris Denton's department at the Royal Free in London. I am now on leflunomide and am pain free, apart from some occasional stiffness in the hands and ankles in the mornings. I am also on lansoprazole for the reflux. I am back to playing tennis and leading a normal way of life. I hope you, too, will be as lucky as me. As you say, there are many twists and turns in this disease, so I realise things may change.

    Good luck.

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