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Mary T: CREST Scleroderma

I was told when I was diagnosed that this was not any big deal.

Purple Stocks by Sherrill Knaggs, ISN Artist I am fifty-two years old and was diagnosed with Raynaud's about twenty years ago, but it has grown increasingly worse over the years. I used to just get some slight whitening in my toes when it first started, but now there are times, particularly in the winter when I cannot feel anything and I need help unzipping and unbuttoning things. I also have this problem in the summer if the air conditioning is too cold. It is horrible. I cannot go anywhere outside in the winter and nothing helps. I have tried every type of glove there is and none of them help at all.

About six years ago, I was diagnosed with CREST. I was also diagnosed with fibromyalgia, but now, after reading all the stories on this web site, I am wondering if my pain is really from the CREST.

This morning I had an appointment with my general practitioner and I mentioned that I was having a lot of joint pain, but it comes and lasts for a while and then it is not so bad. He told me that it was from the CREST.

When I was diagnosed I was never told that the calcinosis was calcium deposits that would cause pain in my joints. I just found that out today. I would wake up in the morning or after I had been sitting for a while and my joints ache so bad. I feel like an old lady. I have trouble straightening up. I also have bad low back pain that even several chiropractors cannot seem to ease. I kept thinking I had arthritis and now I find out that this is all from the CREST. Also, my acid reflux has been worse lately. I was also concerned about itching and a rash I had a few weeks ago that I could not get rid of. I was scratching so much that I was bleeding.

Now, after reading all your stories, I realize that this itching is also from the CREST. I made an appointment with my rheumatologist to discuss all these symptoms next month. I was also told originally when I was diagnosed that this was not any big deal. I was never told about all the problems you can develop.

If my rheumatologist does not explain my problems to my satisfaction, I will be looking for another doctor. I have found that most people do not really know anything about CREST and some have even asked me what it is.

It is very hard to find information about this, but this web site has really opened my eyes about all the problems CREST can cause. Thanks for helping me and I hope my story can help someone else.

To Contact the Author

Mary T.
New email address needed 04/29/08 SLE
Old Email Prefix: mjt919
Story edited 06-22-06 JTD
Story posted 08-21-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Acid Reflux
Raynaud's Stories

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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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