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Kathy: Generalized Morphea Scleroderma

Hi, my name is Kathy. Four years ago I started getting a brown patch on my right shin. Then about six months later I got one on my left shin. I went to a doctor and asked her about it and she said she didn't know what it was but didn't think it was anything to worry about. Then I started having swelling in both of my legs and it hurt if it was cold. I would sleep with my legs elevated very high to bring down the swelling and my husband would wrap them in towels to help keep them warm.

I started noticing more red splotches on my legs that soon turned brown. I also had very bad heartburn. So now I am sleeping in a 'u' shape with chest and head elevated and legs elevated. I went to another doctor and he said I had varicose veins.

Then another year goes by and now I have brown patches all over the bottom and top of my legs. I went to another doctor, and he said I was beating myself up in my sleep. Another year goes by and I now have brown spots and patches all over my stomach, and butt. So I went to another doctor and he said it was a fungus. Another year goes by and I have spots all over my leg, stomach, butt, left breast, arms and back.

I saw another doctor and he said it was because I am fat. And another doctor just said, "Hmm." I finally pressured another doctor for a referral to a dermatologist and had a biopsy done and was finally told morphea scleroderma.

Then I was referred to a specialist in San Francisco. I went to see her two days ago and what a wasted trip that was. She said, "Yep ya have morphea. You can try some of this topical ointment, that may or may not work and keep taking the antibiotics you are on which may or may not work." She has never heard of anyone being sensitive to cold with this so that's probably not related; and if I get worse or just want to come back in a year I can.

I have learned more coming to this site then I did from ever going to a doctor. I have seen that there are many people here that are sensitive to the cold and suffer from fatigue. It seems like I am always tired. I have been going to the gym which seems to help a little. I have lost eighty pounds which has helped with the pain in my knees but it still kills me to go down the stairs. The exercise has also helped with my shortness of breath. But it is hard to make myself go sometimes when all I want to do after work is go home and go to bed.

I am also losing my hair which the doctor didn't think was related either and sometimes I feel like I am in a fog and forget what I am doing but I thought that was just cause I am forty-six and getting old. My vision is blurry which I figure is from getting old as well. Have any of you experienced your vision getting blurry?

I am glad that this site is here. Now I don't feel so alone.

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ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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