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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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Will your appointment on 11/4 be with an oncologist? I hope you feel comfortable with the treatment plan.
Will you post with an update after your appointment?
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2 ReactionsYes I 6
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2 ReactionsMy Doctor put me on nifedipine, it seems to improve my system
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1 ReactionHello, I have several autoimmune diseases and I go see a RA specialist in Alb NM. My Doctor gives me medicine for my RA and I was wondering if that medicine is also for my CREST syndrome. I asked him but no direct answer. I am very miserable with pain and swollen feet and hands even with my meds. I have 3 out of the 5 and RA
@paulinechavez1 Welcome to Connect, a group of people who help each other through their medical journeys. We’re not medical professionals so we can’t diagnose or prescribe medications, but we try to help. How long have you had RA and CREST syndrome? Do you have any idea why the doctor doesn’t respond to your complaints of pain? Are there any non-prescription medications that help with the pain?
If the doctor continues to be unhelpful, maybe it’s time to find a new doctor. No one should have their pain ignored!
This article may give you some more information.
https://www.mayoclinic.org/diseases-conditions/crest-syndrome/diagnosis-treatment/drc-20355540
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2 ReactionsI have MCTD with Scleraderma overlap. Have been on the journey over 20 years. Some of the drugs are great for both conditions. Plaquenil, Etodolac (buffered NSAID) and a biologic like Methatrexate work well. For most everything else, Dr and I treat the symptoms. For generalized pain, a walk, yoga/pilates/water exercise make a difference. For specific joint ailments, strengthening core and flexibility, a manual PT is just the thing.
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1 ReactionI have Crest syndrome including call the letters. I'm especially concerned with my weight loss. Does it ever stop. I was diagnosed in 2017 but didn't really start showing any active symptoms probably a couple years later here I have lost close to 100 lb. Is this a norm?
Welcome, @veegee. I moved your question about CREST and weight loss to this existing discussion:
- Limited Scleroderma or CREST Syndrome: What helps? https://connect.mayoclinic.org/discussion/crest-syndrome/
I did this so you can read previous posts and connect easily with fellow members like @shasmith @calizona62 @fracturedd @1corinthians926 @punky1973 @moselurl @paulinechavez1 @marye2, who can share their experiences.
Even if you try your best to eat a healthy diet, people who suffer from scleroderma are at increased risk of malnutrition. Malnutrition in scleroderma is either caused by inadequate intake of nutritious foods or from poor absorption of nutrients from the gastrointestinal (GI) tract.
Are you eating less due to eating issues like difficulty chewing and swallowing? Or are you eating well, but the weight loss may be poor absoption?
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2 ReactionsI was diagnosed with scleraderma and MCTD in 1996. Now that you mention it, I have bouts of "stomach dumping" and cramping after eating some meals. Tomato, high levels of fat cause me to lose entire meals shortly after eating. If you do not feel well, make sure you get the proper hydration and number of calories daily.
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!
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