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  1. Mary, Thank you for sharing your story with us. We're glad that your ulcer's did heal & your feeling better. Some days seem to be worse than others for him when it comes to the pain associated with the necrotic ulcers but, most of the time it is a constant burning & stabbing pain. He's even woken up at night in tears,screaming because it hurts so bad. The pain medications do help considerably for him but, it doesn't take away all the pain. It's amazing how it can reshape your fingers and his nail has also fallen off because of it. His Rheumotologists prescribed Revatio which is lik
  2. Hello, I'm so glad I found this website & hope to converse with people who are having the same issues as my husband. He was diagnosed with CREST SYNDROME back in 2001 when he was admitted to the hospital with Chest Wall Pain at thirty years old (I found him on the shower floor curled up in the fetal position.) He had issues breathing in deeply & it was so painful they had to hook him up to pain medication. At the same time he explained that he had small bouts of heartburn, strange sores on his fingers & that his fingers & toes would turn purple & white when he
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