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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csmirat | @csmirat | Apr 28 11:34am

I have has limited scleraderma, crest for 23 years. Most of my symptoms have been gi motility, reflux and reynauds hands and feet. Due to reynauds I have severe neuropathy in my feet which cause the bones to become soft and both my feet are collapsing and have had 5 foots surgeries and more to come. I have alot of knowledge and continue to learn all the time about my disease process. I have horrible reflux and have to get my esophagus dilated at least once a year and am doing so much better. Read in Chicago newspaper if you take melatonin daily will help. Started taking 2 gummies at night a month ago and can't believe how much it has helped. I can now eat hamburgers again and pancakes withIut getting reflux and at night paying for it. I'm not joking quite amazing effects. And so happy

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1kay2 | @1kay2 | Apr 28 3:31pm

Sometimes I think we are told a fancy name so we believe we have that disease. I wish we were just told the solution. Many of your symptoms I have with my fibromyalgia. I found out that cold, rain, and over extending myself makes my whole body hurt with all those symptoms. Therefore I stay in on a cold wet day.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 28 9:12pm
In reply to @tbarcellona "I have the exact problems. I agree nothing truly helps. I digestive issues. Started taking Pure..." + (show)
@tbarcellona

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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@tbarcellona @patj123 What does your doctor say about the sores on your hands? Are they worried about infection? Have you seen a gastroenterologist for your digestion problems?

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1 reply
csmirat | @csmirat | Apr 29 9:01pm

You need to look for a dr who is going to help
Dont know if you go to rheumatologistbut I started there and they believed me when it came to my pain ana apain dr would be good also

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csmirat | @csmirat | Apr 29 9:07pm
In reply to @becsbuddy "@tbarcellona @patj123 What does your doctor say about the sores on your hands? Are they worried..." + (show)
@becsbuddy

@tbarcellona @patj123 What does your doctor say about the sores on your hands? Are they worried about infection? Have you seen a gastroenterologist for your digestion problems?

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I do get dores on my hands usually in winter and have many tools in my toolbox to help with this. If you are not seeing rheumatologist you need to get onwe asap. Thank God for my rheumatologist who Mae me realize I'm not crazy and these symptoms are my crest progressing. I am now in control of my disease. It is not in control of me. I have a team of 7 doctors that I see twice a ear and at tistime very pleased with the control I have.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 29 9:31pm
In reply to @csmirat "I do get dores on my hands usually in winter and have many tools in my..." + (show)
@csmirat

I do get dores on my hands usually in winter and have many tools in my toolbox to help with this. If you are not seeing rheumatologist you need to get onwe asap. Thank God for my rheumatologist who Mae me realize I'm not crazy and these symptoms are my crest progressing. I am now in control of my disease. It is not in control of me. I have a team of 7 doctors that I see twice a ear and at tistime very pleased with the control I have.

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@csmirat Wonderful!!!!

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okiekarma | @okiekarma | Jul 22 11:04am
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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I also have same symptoms as you! It has taken 15 years to find MD who is the BEST, a family practitioner not educated in U.S. I am also a retired RN. And in fact, she has educated me!!! Please continue to search and do not settle. It makes a world of difference. GOOD LUCK

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treefrog | @treefrog | Jul 23 8:55pm
In reply to @fracturedd "Most definitely you should find a rheumatologist who specializes in scleroderma/Crest. My rheumatologist usually does a..." + (show)
@fracturedd

Most definitely you should find a rheumatologist who specializes in scleroderma/Crest. My rheumatologist usually does a CBC panel which includes testing hemoglobin levels. Hemoglobin is a protein in your red blood cells that carries oxygen from your lungs to the rest of your body. Very important to sleep on a incline and take nexium before bed until your doctor prescribes you something. This is why you are burping foam. Also don't eat before bedtime. Borage oil, gotu kola, and bikram yoga have helped my disease tremendously.

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Definitely get a Rheumatologist who understands CREST. I am on schedule to have a Pulmonary Function Test (PFT), CBC, Echo and a twice a year meeting with my Dermatologist. I have had surgeries on my fingers to remove the calcium deposits. I do have acid reflux but I avoid eating late, acidic foods, spicy foods etc and this is under control. I was diagnosed 25 years ago. I practice yoga, this helps so much with the hands and feet mobility and the breathing, lung capacity. Tumeric and Ashwagandha seem to help along with 200mg of Plaquenil and 10mg of Minocycline. Staying as active as possible has been extremely helpful.

Remember you have to fight for yourself and Doctors only know what they know. The young Doctor that diagnosed me so long ago was curious and didn't give up for me. Find a champion and don't settle for less.

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1 reply
sharka | @sharka | Jul 24 6:33am

What does the 200mg of Plaquenil and 10mg of Minocycline do for you, and how long have you been using it? I've been prescribed Plaquenil, but after reading the side effects, I'm scared to take it
Thank you!

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dancing1 | @dancing1 | Jul 25 9:13am
In reply to @treefrog "Definitely get a Rheumatologist who understands CREST. I am on schedule to have a Pulmonary Function..." + (show)
@treefrog

Definitely get a Rheumatologist who understands CREST. I am on schedule to have a Pulmonary Function Test (PFT), CBC, Echo and a twice a year meeting with my Dermatologist. I have had surgeries on my fingers to remove the calcium deposits. I do have acid reflux but I avoid eating late, acidic foods, spicy foods etc and this is under control. I was diagnosed 25 years ago. I practice yoga, this helps so much with the hands and feet mobility and the breathing, lung capacity. Tumeric and Ashwagandha seem to help along with 200mg of Plaquenil and 10mg of Minocycline. Staying as active as possible has been extremely helpful.

Remember you have to fight for yourself and Doctors only know what they know. The young Doctor that diagnosed me so long ago was curious and didn't give up for me. Find a champion and don't settle for less.

Jump to this post

What kind of yoga do you do. I’m 78 it’s very hard to have all this cannot take meds so just trying to cope.

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