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shasmith (@shasmith)

CREST Syndrome

Autoimmune Diseases | Last Active: Jan 18, 2020 | Replies (25)

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@johnbishop

Hello @shasmith — Welcome to Mayo Clinic Connect. I'm sorry you haven't been able to find any doctor or treatments that help with your symptoms and Reynauds disease. I wasn't aware that CREST syndrome is an acronym for all the different clinical symptoms seen in a patient with the condition. The National Institute of Health Genetic and Rare Diseases Information Center has some information that describes some of the treatments here:
https://rarediseases.info.nih.gov/diseases/12430/crest-syndrome
There is a Video Q&A about Scleroderma available that might be helpful to view and read the comments here:
https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

Have you thought about making an appointment with Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@shasmith are you able to prioritize your symptom that is most bothersome?

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Replies to "Hello @shasmith -- Welcome to Mayo Clinic Connect. I'm sorry you haven't been able to find..."

Thank you! I’ll read these! Much appreciated! If I had to prioritize in order of most painful to least at this point,
1- severe heartburn, reflux
2- pain and cramping in fingers and toes (my digit joints are actually starting to turn, and their really tight)
3- extremely dry skin
4- Reynauds mostly in my hands, is very painful (I use a boatload of handwarmers)
5- rapid heart rate (annoying not painful)

I have hard little bumps under my skin around my ankles; busted veins and capillaries on forehead lips and back; dry eyes, especially the left). I actually asked the doctor that diagnosed it, “what is CREST?” He said he really didn’t know. I’ll keep on looking.

My Doctor put me on nifedipine, it seems to improve my system