When I read Carla's story it almost sounded like mine! When I was in tenth grade, Raynaud's started and a horrible kind of rash, which I still have thirty years later. This was my only problem for years. I had problems with all my pregnancies, no miscarriages, thank goodness, and I have three beautiful daughters.
Then when I was thirty-seven years old, around Thanksgiving, I thought I was getting a virus. I felt nauseated, weak, and fatigued. It did not go away. Then in January, I was having one of these weak episodes and chest pains. I was not fainting, but I just could not move. I would rush for the bed until they passed.
Finally one night I could not make it up the stairs. My teenage daughter got up and next thing I knew I was in the emergency room. They ran tests to make sure I was not having a heart attack. I was discharged after a few days and had to follow up with a cardiologist who told me it was not a heart problem.
Doctor after doctor, test after test with possible diagnosis of several different diseases that turned out to be nothing. Then I saw a rheumatologist. I was diagnosed after approximately three opinions with definite fibromyalgia. After several more tests and several medications, I was diagnosed with possible CREST. The blood test never confirmed it, but I understand you can still have it yet it will not show up in blood tests.
I feel awful a lot, but continue exercising. I try to keep going. I get some physical therapy now, but I do not know if it helps. I wonder all the time about what I have.
Over this period of time I was diagnosed with asthma from a pulmonary doctor, possible CREST and fibromyalgia from a rheumatologist, minimal esophageal dysfunction from a specialist in that field. I have seen a doctor regarding the red marks (the T in CREST: Telangiectasia) but that is ever so slight too.
I feel that I cannot be sure it is CREST and fibromyalgia. Is that a real disease? I cannot understand how I can fall apart at thirty-seven years old and develop all of this inside of two to three months. I am baffled. What is your opinion? Is this possible?
Email: Withheld by request
Story edited 02-12-05
Story posted 02-14-05 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Esophageal (Throat) Dysfunction
Types of Scleroderma
PDF Brochure: What is Scleroderma?
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email firstname.lastname@example.org to request our Welcome email, or to report bad links or to update this page content.