Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

Comment from: leadsledwilly, 55-64 Male (Patient) Published: February 28

I believe by my symptoms that I have "Linear Scleroderma" I have scaly white spots surrounded by tight reddish brown skin (I'm Caucasian) on my lower right leg (below knee) thickening at the ankle with a dry skin reddish brown foot and Hyper sensitive tip of the big toe. All predisposed to fluid retention handled by a double dose of Furosamide (pee pills). These leg scales used to peel off but now they are seven layers deep and leave a bleeding hole when removed. Soaking in hot soapy water does little good but feels pleasant for awhile following the soak and gentle toweling. NOWHERE in your discussion do you speak of a treatment for this kind of Scleroderma! What really bothers me is the V.A. told me it was just dry skin and gave me cream.

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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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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: Camper, 45-54 Female (Patient) Published: August 17

I have been having horrible heartburn, pain in the center of my chest between my chest bone that won't go away, chest and arms are very sore to the touch, I feel like everything is just stuck in my chest/throat, tiredness and stomach issues.

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Comment from: Nikhat Aara, 35-44 Female (Caregiver) Published: March 07

My mother is a patient of systemic scleroderma. She has been suffering with the disease since 1993. Early on the doctors were not able to diagnose the disease. My father took her to all parts of our country (India), but all in vain. In 2008, a doctor diagnosed her disease as systemic scleroderma. She has been going under treatment (pulse therapy, and medications) and minute changes can be observed. I remember the time when my mother used to cry in front of me and my father. I have seen her condition deteriorating. My mother was beautiful with flawless, smooth skin, and thick hair. But gradually all this has deteriorated. Her face has shrunk. She is just bone and skin. She cannot open her jaws fully and she has digestion problems. I remember the time when she had problems just drinking water, because of her contracted esophagus. During winter her condition gets worse. She cannot use water as this causes her fingers to get swollen. The tips of her fingers, toes, elbows, and nose, get swollen and bleed.

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Comment from: wafaa, 19-24 Female (Patient) Published: January 06

I'm 19 years old and I was diagnosed as localized scleroderma last year. I had symptoms three years ago. Now I am so depressed. I have a large spot in my right thigh and small spot in my right leg. There is a new spot in my left leg. I am afraid from developing systemic scleroderma.

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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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