Limited Scleroderma or CREST Syndrome: What helps?

Posted by shasmith @shasmith, Feb 25, 2019

Diagnosed with CREST 8 years ago. Last 4 years I find more symptoms are surfacing, (acid reflux, heart burn, can’t eat past 4pm, fingers and toes are twisting, Reynauds has gotten worse, heart beat is sometimes very fast, dry skin, aching joints, dry eyes, cramping muscles in hands and feet, and restless legs). Doctors just brush it off when I mention these things. I don’t want to sound like a hypochondriac, but I’m getting very frustrated about the pain and discomfort. Am I crazy, or should I keep searching for a doctor that will at least check?

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I have limited systemic sclerosis. New terminology for CREST. I was just contacted by a research tech from Mayo in Rochester to participate in a GI study related to scleroderma. If you go on the Mayo Clinic .org site under clinical trials. I am really glad to be doing this. Not that I will learn anything new about my illness. Unless there is something significant they report back to me. But because there is so little information and research out there related to scleroderma. Hopefully it will help the next person.

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@mshutch

I have limited systemic sclerosis. New terminology for CREST. I was just contacted by a research tech from Mayo in Rochester to participate in a GI study related to scleroderma. If you go on the Mayo Clinic .org site under clinical trials. I am really glad to be doing this. Not that I will learn anything new about my illness. Unless there is something significant they report back to me. But because there is so little information and research out there related to scleroderma. Hopefully it will help the next person.

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@mshutch I think joining a clinical trial is great!! Thank you! It may not help you but it will help someone, someday

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I really didn't know where else to go. I'm 25 and was just told I have Scleroderma/ CREST syndrome. I've been doing so much reading and research, only on medical websites, of course, but I'm so scared what this could mean for me.

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@babydemonfangs

I really didn't know where else to go. I'm 25 and was just told I have Scleroderma/ CREST syndrome. I've been doing so much reading and research, only on medical websites, of course, but I'm so scared what this could mean for me.

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@babydemonfangs, welcome. I can imagine you're frightened. Getting a new diagnosis, especially in your 20s is scary. I moved your post to this existing discussion:
– Limited Scleroderma or CREST Syndrome: What helps? https://connect.mayoclinic.org/discussion/crest-syndrome/

I did this so you can read previous posts and connect easily with fellow members like @shasmith @mshutch @moselurl @paulinechavez1 @marye2 @veegee @dxcrestsyndrome2020 who have been where you are today – searching for trusted information, learn as much as possible and learn to live with the diagnosis.

As we wait for others to chime in, I think you might like seeing this video with Dr. Leroy Griffing, Mayo Clinic expert, teaching about scleroderma. https://connect.mayoclinic.org/event/video-qa-about-scleroderma/

What treatment is being suggested for you?

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@colleenyoung

@babydemonfangs, welcome. I can imagine you're frightened. Getting a new diagnosis, especially in your 20s is scary. I moved your post to this existing discussion:
– Limited Scleroderma or CREST Syndrome: What helps? https://connect.mayoclinic.org/discussion/crest-syndrome/

I did this so you can read previous posts and connect easily with fellow members like @shasmith @mshutch @moselurl @paulinechavez1 @marye2 @veegee @dxcrestsyndrome2020 who have been where you are today – searching for trusted information, learn as much as possible and learn to live with the diagnosis.

As we wait for others to chime in, I think you might like seeing this video with Dr. Leroy Griffing, Mayo Clinic expert, teaching about scleroderma. https://connect.mayoclinic.org/event/video-qa-about-scleroderma/

What treatment is being suggested for you?

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I was diagnosed with Scleraderma at the same time as MCTD in 1996. However, after the initial few years, the tight, puffy fingers and much of the Raynauds ended. I was on Methotrexate from about 1998 – 2014, but a fairly low dose. This video was immensely reassuring, and seems to reflect what is happening for me. Lung nodules did appear last year, but not at all sure that Scleraderma was causal. For reflux and swallowing issues, hot tea, small meals and the information on webmd seems to help. I am also on Pantoprozole. https://www.webmd.com/heartburn-gerd/triggers

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