Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

A Doctor's View on Scleroderma Symptoms and Signs

Read the Comment by William C. Shiel Jr., MD, FACP, FACR

Common scleroderma symptoms and signs include Raynaud's phenomenon, skin inflammation, heartburn, telangiectasias, constipation, diarrhea, bloating, and abdominal pain. Nevertheless, symptoms vary from patient to patient. Read the entire Doctor's View

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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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: 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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Patient Comments

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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, a friend, or relative have? Please share your story.

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