CREST Syndrome

Posted by shasmith @shasmith, Mon, Feb 25 8:06pm

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?

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

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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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@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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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.

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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.

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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?

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@hopeful33250

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?

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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

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@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?

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@calizona62

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.

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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?

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@calizona62

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.

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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.

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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!!

Liked by shasmith

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@fracturedd

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!!

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Forgot my password and just found my cheat sheet… not persistent but every now and then I have a dry tickle cough. Taking magnesium which seems to help. Burping foam is annoying.. Finally having a scope run next week. Hopefully we can find something that helps. My doctor has never had a patient with CREST before. Does low hemoglobins go with these gastric issues? All of a sudden having that to deal with too and all test so far are clear. GED next week we shall see.

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@shasmith

Forgot my password and just found my cheat sheet… not persistent but every now and then I have a dry tickle cough. Taking magnesium which seems to help. Burping foam is annoying.. Finally having a scope run next week. Hopefully we can find something that helps. My doctor has never had a patient with CREST before. Does low hemoglobins go with these gastric issues? All of a sudden having that to deal with too and all test so far are clear. GED next week we shall see.

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Also now having hiccups that come out of nowhere. This is a crazy mess. Don’t know what to be more worried about!

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@shasmith I have Undifferentiated Connective Tissue Disease with antibodies for CREST. I went to Mayo and they were very thorough in their evaluation (as long as you make the requests for diff appointments). They even do a nail fold study and a circulation study to quantify Raynauds. I think they fit 15 appointments into 1 week, which was impressive. They couldn’t do much for me but your symptoms are much more specific. Let me know if you want more info on the diff specialists/which ones I saw.

A question for you as well- do you have fatigue and brain fog?

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@1corinthians926

@shasmith I have Undifferentiated Connective Tissue Disease with antibodies for CREST. I went to Mayo and they were very thorough in their evaluation (as long as you make the requests for diff appointments). They even do a nail fold study and a circulation study to quantify Raynauds. I think they fit 15 appointments into 1 week, which was impressive. They couldn’t do much for me but your symptoms are much more specific. Let me know if you want more info on the diff specialists/which ones I saw.

A question for you as well- do you have fatigue and brain fog?

Jump to this post

What is CREST?

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Keep searching!

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