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Lois: Fibromyalgia with Possible CREST

I wonder all the time about what I have.

Purple Chrysanthemums by Sherrill Knaggs, ISN Artist 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?

To Contact the Author

Email: Withheld by request
Story edited 02-12-05
Story posted 02-14-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Carla's Story
Esophageal (Throat) Dysfunction
Types of Scleroderma
PDF Brochure: What is Scleroderma?

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!

Go to Louise: Linear Scleroderma

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