1. < Autoimmune Diseases

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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gkuntz114hayden | @gkuntz114hayden | Jun 16, 2023
In reply to @becsbuddy "@gkuntz114hayden Many people are treated in different ways. Treatment depends on the symptoms and their severity,..." + (show)
@becsbuddy

@gkuntz114hayden Many people are treated in different ways. Treatment depends on the symptoms and their severity, co-existing medical conditions, and the patient’s overall health, plus what the doctor feels is best. I have clippers (lesions on the brain) and I’m surprised that others with clippers get different treatments
What has your doctor suggested as best treatment?

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The drug Humira.

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gkuntz114hayden | @gkuntz114hayden | Jun 16, 2023

I almost went to Mayo Clinic to see a Rheumatologist. My doctor found one I have "seen" now twice. It is by virtual appointment online. Keep digging. My sincere prayers. 🙏

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gkuntz114hayden | @gkuntz114hayden | Jun 16, 2023
In reply to @csmirat "There is no cure. I had a difficult time with that for a long time. But..." + (show)
@csmirat

There is no cure. I had a difficult time with that for a long time. But I wake up every morning thanking God for giving me another day. Others have it worse than me. I had a friend who is blind tell me she would rather have what she has, macular degeneration than what I have any day. To say the least I shut down on her. People can be so very rude. Each of us have our own cross to bear, but I don't want anyone to feel sorry for me. I don't want pity.

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🙏👍

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memissyb | @memissyb | Jun 16, 2023
In reply to @csmirat "How did you change your diet??? Friends of mine are trying to get me to do..." + (show)
@csmirat

How did you change your diet??? Friends of mine are trying to get me to do a glutin free diet. And I cannot give up my dairy I've given up meat mostly.

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Honesty, everybody is different but I do lactaid milk instead of regular milk it has helped tremendously. The only yogurt I eat is that free fage. Sugar is really bad for me but I still need a small bite of chocolate almost everyday. I cut out a lot of breads I only have a occasionally and I definitely eat a green leafy salad everyday for minute foods are really good for the microbiomes so I eat sauerkraut everyday applesauce because I can't eat apples due to dentures are a prebiotic naturally. For a while I was intermittent fasting and that seemed like a great idea but I started to get a little weak in the morning so now I'm just doing small meals throughout the day. Depending on your symptoms you're just going to have to experiment and be your best advocate when it comes to the doctor. There are some great doctors out there but there are some really bad ones too that don't seem to even listen you just have to keep plugging along till you find who you connect with. I've had to tell my doctors more about my disease and they know because it's not that common. You can get on the site scleroderma foundation find lots of answers there also.

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2 replies
memissyb | @memissyb | Jun 16, 2023

PS there are lots of sites regarding diets exercise scleroderma and other issues the Mayo clinic is the only place I get my research. I trust the Mayo clinic.

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csmirat | @csmirat | Jun 16, 2023
In reply to @memissyb "Honesty, everybody is different but I do lactaid milk instead of regular milk it has helped..." + (show)
@memissyb

Honesty, everybody is different but I do lactaid milk instead of regular milk it has helped tremendously. The only yogurt I eat is that free fage. Sugar is really bad for me but I still need a small bite of chocolate almost everyday. I cut out a lot of breads I only have a occasionally and I definitely eat a green leafy salad everyday for minute foods are really good for the microbiomes so I eat sauerkraut everyday applesauce because I can't eat apples due to dentures are a prebiotic naturally. For a while I was intermittent fasting and that seemed like a great idea but I started to get a little weak in the morning so now I'm just doing small meals throughout the day. Depending on your symptoms you're just going to have to experiment and be your best advocate when it comes to the doctor. There are some great doctors out there but there are some really bad ones too that don't seem to even listen you just have to keep plugging along till you find who you connect with. I've had to tell my doctors more about my disease and they know because it's not that common. You can get on the site scleroderma foundation find lots of answers there also.

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I also go to that website and now belong to the seraderma foundation, want to be part of any research studies if they have them. Thanks for the heads up on diet I will try some of the things you suggested.

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shasmith | @shasmith | Jun 23, 2023
In reply to @memissyb "Honesty, everybody is different but I do lactaid milk instead of regular milk it has helped..." + (show)
@memissyb

Honesty, everybody is different but I do lactaid milk instead of regular milk it has helped tremendously. The only yogurt I eat is that free fage. Sugar is really bad for me but I still need a small bite of chocolate almost everyday. I cut out a lot of breads I only have a occasionally and I definitely eat a green leafy salad everyday for minute foods are really good for the microbiomes so I eat sauerkraut everyday applesauce because I can't eat apples due to dentures are a prebiotic naturally. For a while I was intermittent fasting and that seemed like a great idea but I started to get a little weak in the morning so now I'm just doing small meals throughout the day. Depending on your symptoms you're just going to have to experiment and be your best advocate when it comes to the doctor. There are some great doctors out there but there are some really bad ones too that don't seem to even listen you just have to keep plugging along till you find who you connect with. I've had to tell my doctors more about my disease and they know because it's not that common. You can get on the site scleroderma foundation find lots of answers there also.

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I am trying really hard to find a happy medium for diet. Right now, I have esophageal scleroderma, so the GERD is harder to control. I had only been eating once a day since not being able to eat past 2pm without suffering so bad at night. Since finally getting a diagnosis and a doctor that is determined, we have changed meds, and I’m trying 3-4 small meals a day, saving my blandest for after 2 pm (like oatmeal, cream of wheat, or a Boost). I’m finally losing about a pound every other day or so. I will finally see a rheumatologist in July. Thanks for your ideas on dietary!

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deb232 | @deb232 | Apr 6 5:53pm
In reply to @shasmith "Thank you! I’ll read these! Much appreciated! If I had to prioritize in order of most..." + (show)
@shasmith

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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Hi, I've also had limited SSc for a few years.
For reflux, my Dr put me on 20mg Famotidine in the evening. Also don't eat anything past dinner. Dr also recommended a wedge pillow. It took a few months to get used to, but an inch of foam from Amazon on top helped a lot.
I avoid spicy, greasy food too. It's much better now.
Best wishes to you
🙏💜

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patj123 | @patj123 | Apr 26 11:28am

I have had a CREST diagnosis for about a year and now all my symptoms seem to be getting worse. Finger sores have migrated from my right hand to my left hand and my skin is horribly dry and my digestion is screwed up.
So far nothing has worked.
Any suggestions

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tbarcellona | @tbarcellona | Apr 27 9:18am

I have the exact problems. I agree nothing truly helps. I digestive issues. Started taking Pure Encapulations Ultra digestive enzymes. Maybe helps. My fingers get white and have sores I bought battery operated gloves from amazon...and I just keep on running Cereve lotion to my hands. Good luck

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