Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

Comment from: silvergal, 45-54 Female (Patient) Published: December 09

My left eye runs all the time, and I have pain in upper and left jaw from trigeminal neuralgia. I went to the dentist but the medicine he gave me does not take it away. It feels like nails in my jaw. I cannot eat hot food. I have my upper and lower plates. It feels like sharp needles in the jaw. I am going to the dentist tomorrow. The pain is so sharp, I need help.

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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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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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Comment from: Barbara, 65-74 Female (Patient) Published: May 30

Here is a positive story about scleroderma. I was diagnosed 6 years ago with diffuse scleroderma. At the time of my diagnosis I already had pulmonary fibrosis and within months went into kidney failure. My skin was stretched tight over all parts of my body and the initial medication resulted in a lot of hair loss. I was a mess. However, my doctors kept close track of my progress, adjusting and adding new medications as needed. Three years ago I was sent for double-lung transplant assessment as it was thought that I would not make it without. Today, without that transplant I feel healthy, my skin has softened and returned to its previous state, my kidney failure is managed (so far without dialysis), and my pulmonary hypertension and fibrosis is being monitored, but does not require treatment at this time. So, just wanted to say that life can improve and when I was in my worst condition I would have liked to have heard some good news because most of the sites I checked made me feel despair. Find the most scleroderma-knowledgeable doctors in your area, then work with them to aggressively manage your disease. There may be no cure, but there can still be good quality of life.

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Comment from: 65-74 Female (Caregiver) Published: May 09

My mom has had Systemic Scleroderma since 1992, that we know of. She was misdiagnosed and we started off seeing a rheumatologist for answers. She was given Minocycline, as part of a research program, but quickly got off of it. She wanted quality over quantity. My mother took her illness into her own hands and researched natural medications. She happily spent 15 years without conventional medicines until she was diagnosed with Pulmonary Hypertension. She is now forced to take Revatio and a few other meds but she is still taking her disease into her own hands. Her diet and exercise is essential. Don't give up hope and always trust your body. Unfortunately, this disease is different for everyone and so are the symptoms.

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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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