Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

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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Comment from: Lisa, 35-44 Female (Patient) Published: September 26

I am 42 years old and was first diagnosed with Raynauds Syndrome about 13 years ago. My fingers would turn blue and white with slight temperature changes. Then i noticed my toes were turning white. Then my tongue turned white and gave a burning sensation. I was given NIFEDIPINE by my consultant. This hasn't made much difference to my symptoms really. About 4 years ago I found it difficult to swallow food. It would get lodged in my gullet and make me vomit. I had a few endoscopic investigations and was given medication to help. I also suffer with my thyroid. I have a lot of flushing on my face which I find very embarrassing. August 2011 I had trouble breathing and was diagnosed with a chest infection. I was given an inhaler and steroids. I appreciate that medical staff can only try their best to help but I just feel like I'm being passed around as a guinea pig and nothing is really helping my symptoms.

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Comment from: dorian, 45-54 Female (Patient) Published: May 18

I was recently diagnosed about a year ago with scleroderma. I have found that my rheumatologist does not give me much information. I do know that I have a lot of pain in my arms, hands, and hips. I have swelling in my joints in my hands. I also have severe psoriasis. My hands are sensitive to cold. I recently started having headaches, which is a symptom that came on suddenly. I found that my skin is very sore on my head and the left side of my face. My eyes are sensitive to light, and it is painful. I have problems with heartburn and digestion. However, since I don't get a lot of info from my doctor, I am not sure if all of this is related. My doctor just asks me if I have trouble breathing, if I have thickening of the skin, and if my hands or joints have been swelling up.

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Comment from: Wynn, 25-34 Female (Patient) Published: May 16

I was diagnosed with localized (linear) scleroderma in 1988 at the age of 2. I had puffy, shiny skin on top of my right foot and was put on prednisone and penicillin. Over the years, I developed patches up the sides of both legs and under my right buttock. These patches have lightened and the skin has thinned. I also had some involvement in my left shoulder and in my hands when I was very young, but this too seems to have faded so that I barely notice it. I have limited mobility in my legs because my hamstrings and Achilles tendons are too tight. I underwent surgery at age 7 to lengthen my right Achilles tendon, and at age 14 to release tendons on my left foot that were pulling my toes straight up. My rheumatologist at the time said intensive physical therapy and five years of methotrexate during puberty kept me out of a wheelchair due to my tight tendons. Today I function pretty normally, primarily dealing with stiffness, fatigue and a weak immune system.

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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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