So far I have been diagnosed with fibromyalgia and Raynaud's phenomenon. In addition, two doctors are leaning toward a diagnosis of scleroderma, but I am not sure which type. One doctor believes I am developing CREST Syndrome.
I went for about two months throwing up everything I ate and although I would not feel like eating for a few days, I did not lose weight. I have a lot of pain throughout my muscles and around the joints for a few days at a time. My ANA is 1:1280.
Off and on, I either wheeze or have a burning sensation in the bottom of my lungs. If I exercise really hard, I have a bloody taste for about an hour afterward. I have lapses of extreme exhaustion; I can fall asleep while typing. Then I can go for a long period and be fine. I feel like I am just imagining the bad days.
I am having trouble dealing with this because I have always been strong, with good endurance and able to concentrate. Now I feel like a whining hypochondriac. I am on three stomach medications and a calcium channel blocker.
As everyone does, I went from doctor to doctor, and I was seeing an internist up until last fall. She had sent for my blood tests from the rheumatologist and some information was missing. We did not retest and based on the information she had, along with my symptoms, I was diagnosed with CREST syndrome and fibromyalgia.
I am not sure about the progression of CREST. I have had this disease for at least four years, probably longer when I think back over the years at the symptoms I've had. Anyway, I no longer go to the doctor because I simply cannot afford it. I cannot get insurance so everything is out-of-pocket, which can get very expensive.
I am a senior in college at the ripe old age of thirty-four and still have a couple of years to go. Sometimes I wonder if I will make it. I plan to teach eventually.
My daily routine is to ignore whatever I feel and take care of my family. Sometimes it seems to be more of a chore than I can bear. My hands stay red and swollen, except when the Raynaud's phenomenon is running rampant with its red, white, and blue. I have episodes of pain that occur with spontaneous bruising. I am not at all clear what that is. The fibromyalgia never completely lets up. The pain is constant: twenty-four/seven. My hands and feet are shiny and stiff.
I have esophageal dysfunction,telangiectasia, Raynaud's phenomenon, and apparently, sclerodactyly. These are four out of the five criteria for CREST. I have to admit, over the past few months, I have done considerably better (at least up until the past two weeks). Only time will tell. I believe in miracles - and I am waiting for mine.
Story update posted 4-20-02
Story edited VH1: JTD 9-9-03
ISN Senior Artist: Sherrill Knaggs
Story Editor V1: Judith Devlin
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