Limited Scleroderma or CREST Syndrome: What helps?

Hi:
Yes, you must find a Doctor that can help you.

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?

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.

Sounds like your Autoimmune is affecting your GI tract. I recently have been diagnosed with HYPO-CONTRACTILE Esophagus disordered brought on by an autoimmune disease (either Lupus or Scleraderma) I have yet to find out which. I had persistent acid reflux that worsening. I went thru multiple testing including a esophageal motility test. That confirmed my diagnosis. I am still trying to piece it all together. My mother had Scleroderma. I would search out a Gastroenterologist who is willing to treat the patient as a whole patient not just the GI tract.

Hello @shasmith

Until I read your post I had not heard of CREST Syndrome either. I agree with @johnbishop that a trip to Mayo would be a good idea. If that is not possible due to insurance or travel expense, you should at the very least seek help at a multidisciplinary medical center, like a university medical school. It is important that you advocate for yourself in seeing the best specialist possible. This will ensure the most effective treatment.

Do you live near a Mayo facility or another medical center such as that?

No. I live in NW Arkansas. But I think my insurance is good where ever. I am trying to see a Rheumatologist. Problem is, he won’t see me until I’m ‘referred’ and after the third request, I’m tired of asking. Looking for a new HCP now. I may look into Mayo. My brother in law goes to MN for his Parkinson’s. Thank you

@shasmith

I would like to hear from you again and know how you are doing with this disorder and finding just the right doctor. Will you keep in touch?

Hi @calizona62, welcome to Mayo Clinic Connect and thank you for sharing your experience...that is really helpful. Are you able to share what helps for your symptoms or what you are doing for a treatment?

What medications do you take for the reflux? I started taking Dexilant a year ago, it has helped more than anything. Do you have the issue of vomiting through the night? If I eat pay 4pm, that’s an assurance, even sleeping on a wedge.

Do you have a persistent cough? Do you take any kind of digestive enzyme? I take 2 nexium before bed,digestive enzyme/ginger tumeric kombucha,and a very healthy clean diet. These are a couple things that have helped me with the reflux part of crest/scleroderma. It is important to get the reflux under control to protect your lungs!!