CREST Syndrome

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?

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

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