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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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angellav | @angellav | Mar 9, 2023
In reply to @csmirat "I have had limited scleraderma for 21 years and I was lucky enough to find excellent..." + (show)
@csmirat

I have had limited scleraderma for 21 years and I was lucky enough to find excellent drs to take care of Mr. I call them my team the 2 most important drs are Internal Medicine and Rheumatologist. I have a Pain Dr., eye Dr and Gi Dr. Because alot of my symptokms involve my esophagus and stomach. And all of them are women except for my pain Dr. They all believe me and I stopped the hypochondriac game I used to play with myself. I stopped doubting myself. It all makes a huge difference in my life to take control of my disease and have my team help me do that.

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So wonderful and positive to share. Doubt and stress sometimes hurt you more than the disease itself. I have RA manageable , now I see small rashes and legions coming on my skin. I went to my primary he put me on steroids. I have rheumatologist app. In few weeks. So stressful.

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1 reply
csmirat | @csmirat | Mar 9, 2023
In reply to @angellav "So wonderful and positive to share. Doubt and stress sometimes hurt you more than the disease..." + (show)
@angellav

So wonderful and positive to share. Doubt and stress sometimes hurt you more than the disease itself. I have RA manageable , now I see small rashes and legions coming on my skin. I went to my primary he put me on steroids. I have rheumatologist app. In few weeks. So stressful.

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A rheumatologist will help guide you in the right direction and remember if there is something you don't like say so. This Dr is going to be your major Dr for this disease process. And if you don't care for him or her then move on. I had seen one rheumatologist who refused to prescribe me placquenil when I was on it with the rheumatologist I was with and then she retired. I saw 2 rheumatologist before I found the one I am with now for t years.

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csmirat | @csmirat | Mar 9, 2023
In reply to @hinac "BTW, I also have chronic hives for over 7 years. It is finally under control last..." + (show)
@hinac

BTW, I also have chronic hives for over 7 years. It is finally under control last year under a new Allergist.

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I don't know how you feel about exercise, but I can tell you when covid came and we came home to work I lost 32 lbs with exercising on my stationary incumbent bike that sat there 5 years before used. Once I lost the weight my pain is 70 % better. I stopped exercising and alot of my pain returned. I have to exercise to stay flexible otherwise I can't walk. I use a cane now during winter.

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annie1951 | @annie1951 | Apr 3, 2023

What foods do I stay away from?

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shasmith | @shasmith | May 9, 2023

I stay away from high fat like butter or greasy foods, also real spicy and especially foods with a high acidity. I don’t eat anything after 3 pm. I drink a lot of fluids. My esophagus no longer works, (esophageal scleroderma) so I have to be cognizant about chewing real good. And drinking lots with my meals.

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titomun | @titomun | May 22, 2023

Yo también tengo el sindrome de CREST que es acrónimo de calcinosis, reynaud, esofagitis, sclerodermia y telangectasias ; en resumen son varias afecciones que se pueden dar juntas. Requiere de diagnóstico y tratamiento médico específico. Vea a un médico reumatólogo pronto.

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titomun | @titomun | May 22, 2023

Por mi parte teniendo esta enfermedad( CREST) estoy sintiendo muy delicadas y dañadas las puntas de los dedos de mis manos. ¿Alguien conoce de paliativos para la alta sensibilidad y dolor en los dedos de la mano?

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gkuntz114hayden | @gkuntz114hayden | Jun 14, 2023

COVID seemed to lead into CREST (in my case). 8/25/2022-present. Latest Labs show: elevated BUN, High WBC count (along with high Neutrophils, Monocytes, and "Immature Abs Granulocytes". Been taking Prednisone, but Rheumatologist wants to start me on Humira injections. Other symptoms: fatigue, irregular sleep habits, lung nodules, arthritis of hands, spine, and Sacroiliac Joints. Obvious Scleroderma with Reynaud's of hands and feet. Internal calcifications, blurry vision, some difficulty swallowing, but GERD is minimal. Abdominal Aortic Aneurysm surgery in Feb, 2023. Any thoughts?
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Amanda Roe | @amandajro | Jun 14, 2023
In reply to @gkuntz114hayden "COVID seemed to lead into CREST (in my case). 8/25/2022-present. Latest Labs show: elevated BUN, High..." + (show)
@gkuntz114hayden

COVID seemed to lead into CREST (in my case). 8/25/2022-present. Latest Labs show: elevated BUN, High WBC count (along with high Neutrophils, Monocytes, and "Immature Abs Granulocytes". Been taking Prednisone, but Rheumatologist wants to start me on Humira injections. Other symptoms: fatigue, irregular sleep habits, lung nodules, arthritis of hands, spine, and Sacroiliac Joints. Obvious Scleroderma with Reynaud's of hands and feet. Internal calcifications, blurry vision, some difficulty swallowing, but GERD is minimal. Abdominal Aortic Aneurysm surgery in Feb, 2023. Any thoughts?

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Hello @gkuntz114hayden and welcome to Mayo Clinic Connect. I wanted to quickly connect you with others who have experience with CREST, so you will notice I have moved your post here:
- Limited Scleroderma or CREST Syndrome: What helps?: https://connect.mayoclinic.org/discussion/crest-syndrome/

Members like @shasmith @csmirat and @angellav may be able to rejoin the discussion to share more with you.

What are you most concerned about or looking for feedback on specifically so that others may best share?

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2 replies
gkuntz114hayden | @gkuntz114hayden | Jun 14, 2023
In reply to @amandajro "Hello @gkuntz114hayden and welcome to Mayo Clinic Connect. I wanted to quickly connect you with others..." + (show)
@amandajro

Hello @gkuntz114hayden and welcome to Mayo Clinic Connect. I wanted to quickly connect you with others who have experience with CREST, so you will notice I have moved your post here:
- Limited Scleroderma or CREST Syndrome: What helps?: https://connect.mayoclinic.org/discussion/crest-syndrome/

Members like @shasmith @csmirat and @angellav may be able to rejoin the discussion to share more with you.

What are you most concerned about or looking for feedback on specifically so that others may best share?

Jump to this post

What are the best treatments?

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