Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

Comment from: Islander, 55-64 Female (Patient) Published: March 13

I am 60 now and found out about my scleroderma from a thick skin plaque biopsy taken in the fall of 2012, which was developing near my right hip. For about twenty years it was believed that I had chronic fatique syndrome. I also have had carpal tunnel in both hands, having the operation done on one hand only to date. I too suffer from having swollen hands, esp. at night and early morning. Numbness in the hands and legs seems to be occuring more frequently. My muscles are slowly loosing their strength along with some jabbing pain from time to time in the long muscles in my arms and legs. There is also some joint pain, even in the feet. I have had gastro issues including frequent nausea, bloating etc. Also unexpected weight loss of about 25 pounds, but still a normal weight for my height. I regularly need ten to twelve hours of sleep and usually in bed by eight. Try to walk or do some yoga daily along with household duties, but it's all slow going! So far, no medications. Will be seeing a rheumatologist in July.

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Comment from: Brenda, 35-44 Female (Patient) Published: January 14

I was diagnosed with linear scleroderma (morphea) 15 years ago. The onset was sudden, affecting my lower left leg and spreading up and across a portion on my abdomen. My skin thinned, which also destroyed my nerves leading to severe muscle weakness. While my condition was active I was lucky enough to have three children. Following the last child I had 5 years on methotrexate which ended the active phase. I still have a muscle weakness and a thin looking left leg but I live a normal active life, running, skiing, and horse riding. I just can't walk in high heels.

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Comment from: geoff, 75 or over Male (Patient) Published: December 10

I have had Scleroderma for about 5 years. It affects my skin, mouth, etc. I now have a swollen ankle that could be thrombosis.

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Comment from: Red, (Patient) Published: April 04

My sister was diagnosed with scleroderma (morphea) 14 years ago when she was 12. Started out as what looked like bruises along the back of her left arm, and slowly, the "bruises" turned into scar tissue. After about a year or so, she was diagnosed. Now, the back of her left arm, including portions of her shoulder, wrist, hand, and the pinkie and ring finger on her left hand has severe scarring - shiny, thickened, inflamed and discolored skin - with slight bone deformities in her two affected fingers, as well as small calcium deposits on her fingers and elbow.

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Comment from: anna, 45-54 Male (Caregiver) Published: February 22

My husband is 48 and has been diagnosed 5 years but we have been seeing the dr. since 1997 but no one could tell us anything. He has Raynaud's to both hands and has the butterfly rash on his nose he does have hypertension. These are the only symptoms all his blood tests are neg. he had gastric by-pass 3 years ago and has done well with that. His fingers having starting having contraction toward the palm I am hoping that this is from a vitamin deficiency the dr. has drawn blood and we will know Monday. When he has any change at all it worries me! I will pray for everyone!!!

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Comment from: Pasqual, 35-44 Male (Patient) Published: January 19

I was diagnosed with localized Scleroderma, also called Morphea, six months ago. At first I had a one inch shinny patch on my elbow and then another patch, about four inch, developed on the right leg. My dermatologist prescribed me a cream called Dovonex (pretty expensive cream). I used it for a couple of months but I did not see any difference. I addition the cream was making my muscle sore at night. I started using Jergens over the counter cream. It helps the skin stay moist when I use it twice a day. Sometimes, depending on how I sleep, my leg muscle hurts. I just turn on the other side and pain goes away. Other than that the condition does not bother me. I just try to ignore and go on with my life. Hopefully someone will develop an effective drug someday.

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Comment from: marivan, 55-64 Female (Patient) Published: January 19

My doctor finally diagnosed me, (after seeing her for 10 years and her insisting I had Fibro all those years) with Crest Syndrome and MCTD, (mixed connective tissue disease), which includes lupus, scleroderma, Raynaud's, etc. I have Gerd, IBS, heart pains and high blood pressure with high heart rates, trouble breathing, whenever I try to eat, walk, etc. and now my esophagus is not doing well. Sometimes I can't swallow at all, other times, while drinking my throat closes up and I end up gagging. I'm on 300 mgs of morphine with Norco for break through pain, and all kinds of medications for all my other symptoms. I also have a lot of swelling throughout my body and I have to wear gloves to try to keep my hands warm. I'm always cold, too. I'm homebound and use a power chair because I can't walk without severe pain. I have a high degree of pain tolerance and the pain medication helps a little. But, I have a deep faith, pray every night and try to keep a smiling face every day, when I can. I have no idea of my future, except to know I may not last 10 years. I'm not afraid.

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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?
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