Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

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: CORAL, 35-44 Female (Patient) Published: December 16

I don't know what exactly my problem is because some of the doctors think that it is vitiligo and a doctor said that it is morphea. It is like a circle about 3 cm and it expands with another circle like the first.

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Comment from: riana, 45-54 Female (Patient) Published: December 05

I'm a 53 year old female. I was diagnosed in 2000 with Raynaud's and systemic sclerosis (scleroderma). Little Raynaud's involvement so far, not really noticeable and I am in 100 percent healthy condition so far after 13 years. In 2000 after tests there was mild esophagus involvement which till now I do not experience. I am on no medication.

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Published: June 04

My mother has had Raynaud's and scleroderma for years now. One of the worst things is when she eats she would get attacks where she would gag and cough up mucus. These episodes would last for hours and sometimes a day or more. She wouldn't feel better until all mucus was out. Then she would be good for days but it would happen again. A few weeks ago she got a virus that made her go incoherent and pass out. She had fever and was dehydrated. She spent one night in hospital. She came home with antibiotics but was very week and took 3 weeks to recover. The amazing thing is she has not had the mucus problem since she had the virus. Either the virus or the antibiotics ended that problem. So far it hasn't returned and it has been over a month.

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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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