Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

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: Julie B., 45-54 Female (Patient) Published: June 29

I was diagnosed with linear scleroderma by a biopsy in high school. I am now 51. It started with a hyper-pigmented area on my forehead, and over the years, has progressed to a large area of hair loss on my scalp and the loss of connective tissue in that area so my skull has a large dent. When first diagnosed, my dermatologist tried treating it with Dilantin, which did not help. Over the years, I have returned to a dermatologist to see if there has been any progress toward a treatment, but there hasn't. There is scar tissue in the area of the hair loss, so I guess there is no hope for regrowth. I guess I am lucky to have no other 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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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: 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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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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