← Return to Limited Scleroderma or CREST Syndrome: What helps?

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@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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Replies to "Thank you! I’ll read these! Much appreciated! If I had to prioritize in order of most..."

I was dx’d with Crest in 2020. I literally have the same issues as you do, almost exactly. My toes have recently started to twist as well. It is horrible!

I hope you have a rheumatologist that you are going to. A rheumatologist will be able to help you with Crest. You really should have a team of doctors, but the most important are a G.I. doctor, a rheumatologist and a dermatologist. I have sclerosis oof the throat now… no fun. That just started last year. I really should only be drinking liquid meals but I confess I still eat solids but have to be VERY careful. I have had some scary chocking episodes.

My rheumatologist has started me on Hydroxychloroquine 200 mg which I have not started taking yet but will in a week. I had to go through a process of accepting that this is what I really need to do. I’m not big on medication‘s and it’s been a hard adjustment for me mentally just knowing that I’m going to need to do this to prevent (or slow down at least )further progression of the scleroderma damage.

I wouldn’t delay if you don’t have a rheumatologist you need to get one and if you don’t have a doctor that’s explaining all of this to you you need to find one right away.

I have found that taking curcumin/turmeric has been somewhat helpful in the inflammation issues that I have related to this. I am never without lubricating eyedrops. I bought some toe separators, which helped a little bit, temporarily. The toes on my right foot are the ones impacted by the twisting issue currently. I had chalked this up to an ankle break on my left foot in January 2022 and I was using my right foot to support a lot of my weight for several months. After reading your post, I am wondering if it’s just part of the progression of this.

Hope that you find the help you need and are able to feel a bit better!