Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

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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Comment from: Megan, 65-74 Female (Patient) Published: March 17

I have been diagnosed with incipient scleroderma. The biggest problem I have is quite annoying Raynauds which means although I live in Spain where the weather is quite warm. I still have to wear gloves also my nose gives me terrible trouble. The bridge of my nose seems to have hardened and I feel as if my nose needs clearing all day and it affects my breathing. Those are my most troublesome problems I also have trigeminal neuralgia which does not help.

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Comment from: bonniemare, 35-44 Female (Patient) Published: March 30

I am 39 years of age and was diagnosed with scleroderma about 11 years. ago. It's been tough. 19 surgeries, many hospital stays not to mention ALL the doctors appt.'s. It is in my lungs, pancreas and that darn rash you get on your face that follows down my body. Also I have 2 kids and it breaks my heart that they are watching their mom getting sicker. It seemed to take off full speed. I've been on chemo and all those drugs. Never again will I do that.

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Comment from: Mama, 55-64 Female (Patient) Published: January 11

I have been battling with Scleroderma for about 8 years now. I have the systemic which involves the lungs and Esophagus and digestive end of it. I also deal with the Raynaud's. So far the only thing that has helped is the oxygen that has helped the muscular skeletal part of it. I am frustrated as to why the doctors don't just automatically do the stem cell remedy which from my research has delivered excellent results.

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Comment from: Donna, 65-74 Female (Caregiver) Published: June 23

My mum was diagnosed with scleroderma over 12 years ago, it has now attacked her lungs and kidneys as well as her throat in conjunction with Reynaud's and various other symptoms. My mum is also diabetic. In relation to scleroderma mum kept going to the doctors in the early stages with constant chest infections, and they kept giving her antibiotics. Mum was finally diagnosed and then volunteered to be part of a research program for this disease. The chemicals that have been pumped through my mum is endless and extremely toxic , she's has had 8 Chemo Therapy treatments, she was on cyclosporine, prednisone and various other drugs not including her diabetic meds.Then they wanted her to go on Methertrexate. The Researchers have now deserted her and she now relies on her lung specialists for everything. I am ashamed at the way the medical Research profession involved with my mums case have treated her, she served their purpose and now nothing.

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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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