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Limited Scleroderma or CREST Syndrome: What helps?
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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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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1 ReactionSometimes 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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1 Reaction@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?
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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1 ReactionI 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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2 Reactions@csmirat Wonderful!!!!