Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

Comment from: merimac, 55-64 Female (Patient) Published: February 01

I am 60 years old and have limited scleroderma. My hands and wrist are swollen, red and hurt badly. My face is swollen and hard at all times. I have a rash around my neck that itches but doesn't bother me otherwise. I have not taken any medication for this after trying prednisone which made my back hurt and my face swell more. I started swelling in May 2015. I took it upon myself to try natural approaches. So I'm only into about 9 months. I started taking high doses of magnesium, NAC (N-acetylcysteine), and ubiquinol for the calcium deposits I feel in the top of my head and around wrists. I also take Motrin for the body aches and pain. I will do some fasting in the future because I feel better when I don't eat a lot. I also have a proper diet of fruits and veggies. No smoke or drink. I will eventually eliminate all meat. I can see myself doing ok with this if it stays on hands and face. I will have blood tests done eventually for antibodies.

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Comment from: Patrick, 25-34 Male (Patient) Published: July 21

I am 25 now and was diagnosed with scleroderma when I was 23. I was perfectly healthy and in the army at the time. I started feeling some pain in my shoulders but thought nothing of it. Then pain in my calves, and that's when I went in. Shortly after, I started swelling up, especially my fingers and ankles. The doctors first thought I was having blood clots, and thought I had a heart problem. After about 6 months of seeing doctors, I was diagnosed with scleroderma and eosinophilic fasciitis. I have learned to live with it, it is worse in my hands than anywhere, though my skin is patchy and tough almost everywhere, and shiny, and I have been losing hair on my body as well. I have been through physical therapy and do exercises and will be seeing a lung specialist next month to see if it's affecting my lungs at all. I have read some pretty rough stories on here, and my heart goes out to all of you! Hopefully they find a cure for this!

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Comment from: Retired Paramedic, 55-64 Male (Patient) Published: July 08

I have red blotches on face and chest, swelling discolored legs, and feet with frozen and deformed toes. I have constant head ache with jaw, tooth, neck, back, hip, and feet involvement. I also have difficulty swallowing, my teeth hurt, rotting and breaking off. Besides scleroderma I have pulmonary arterial hypertension, interstitial pulmonary fibrosis, chronic insomnia, chronic constipation, and depression.

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Comment from: Ina, 55-64 Female (Patient) Published: October 18

I have black and purple raised lumps on fingers that never go away permanently. Also my blood vessels break easily with too much pressure. You can actually see the throbbing before damage is done. I also have the worst burning sensation, I still have permanent little black spots on my fingers with lots of broken raised purple veins in hands and fingers.

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Comment from: Elizabeth, 45-54 Female (Patient) Published: April 04

I've had linear scleroderma since I was 7. I am now 53. I have found that cold water wraps help alleviate the heat associated with an attack. Most dermatologists and rheumatologists are impressed with my knowledge of the disorder. I have also found that a sudden rise in temperature outdoors usually precedes an attack. I also use Preperation H ointment to alleviate the dryness and the tightness that is part of this disorder. I have found that limiting my salt intake is helpful in controlling the swelling in my left foot and ankle.

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Comment from: carolyn, 45-54 Male (Patient) Published: April 19

I am 75 and lately twice I have been woken up at night with sweating and nausea that last for about two hours.

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Patient Comments

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Scleroderma - Describe Your Experience Question: Please describe your experience with scleroderma.
Scleroderma - Treatment Question: What kinds of treatment, therapy, or medication have you used to manage symptoms of scleroderma?
Scleroderma - Types Question: What type of scleroderma do you have?

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