Hi, I am a thirty-five-year-old female and live in Ontario, Canada. I first noticed something was not right at the end of August 2002, when I started experiencing some muscle pain in my legs, along with fatigue.
Slowly over the next few months, my legs and arms started to swell to the point that I could hardly walk or do simple tasks like getting dressed! My whole body swelled, even my neck and face.
After many visits to a rheumatologist and an infectious disease specialist to rule out infections and parasites, I was finally put on prednisone. The effects were miraculous! I have been on prednisone for almost two months. I started at 40mg a day and am now down to 25mg a day. I haven't really had any side effects yet.
My arms and legs still feel really hard and are very inflexible. I can't fully open my hands or point my toes. It has also affected my abdomen to the extent that my rib cage is restricted. I can't always take a full deep breath, especially when I am full after eating. I have discoloration and bumpy skin on my arms and lower legs. My skin looks slightly darker around my ankles and shins and a bit on my wrists.
I had an echocardiography, which came back normal. I have also had ultrasounds, chest x-rays and hundreds of blood tests. I was finally diagnosed with Eosinophilia-Myalgia Syndrome (EMS) after having a muscle biopsy from my arm and everything else had been ruled out. I am told it's pretty much identical toeosinophilic fasciitis, (EF) but not as localized.
I have been trying to find out as much as I can about this disorder, but there does not seem to be much out there. There was an outbreak years ago related to L-tryptophan, but nothing recent has been written about it.
If anybody can shed some light on this for me I would appreciate it. I want to know what I have to look forward to in the future and what kind of medication or therapy is effective. Are there any doctors or therapists that specialize or have experience with this?
Feel free to write and ask questions.
Email: [email protected]
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
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