My name is Jennifer Foster and I have been diagnosed with Eosinophilic Fasciitis.
I am a twenty-seven-year-old English teacher living just north of Toronto, Ontario. (I have just read the instructions about writing this testimonial and 'forgetting what you learned in English class'—forgive me if that is particularly hard to do!)
In July 2000 I got married and on our honeymoon we went canoeing and biking and swimming and kayaking. I could not have felt better.
In November of 2000 I started to experience a pain in my wrists and ankles. I had been rather lethargic and gaining some unwanted weight so I had started Tae Bo. I decided it was too hard on my joints. I did a bit of cross country skiing in December; then I complained of pain in my arms (and a tightness) to my doctor, who said it was common for cross country skiers.
At Christmas I could not get up comfortably from a seated position on the floor.
I see now I was in major denial. By February, I was experiencing extreme swelling, pitted edema, and joint contractures in my knees and wrists. I could not make a fist nor could I straighten my hand. I had started a routine of work and sleep only. Every step ached and if I were to stretch I would feel rockets of pain and a sensation of prolonged and painful flexing of the muscles even after the movement had stopped. I could not open a water bottle. Or turn the ignition key, let alone belt myself into the car.
I am happy to report that my complaints at this time were heeded by doctors and my progression due to their expertise has been phenomenal. When my family doctor saw my swollen limbs he sent me to an internist, who noted heart concerns. The tricuspid valve was moderately regurgitating. He put me on a ton of lasix and I lost 15 pounds in 2 weeks.( I normally weigh 112 lbs so that is a lot! It seems the weight was all water.) They thought this was due to heart irregularities, and I know now that it was the first sign of this disease. Since the cardiology concerns were also new, I think the tissue disorder triggered the tricuspid insufficiency.
I met with a cardiologist in Toronto who ordered a Transesophageal Echocardiogram, since I had already had a regular echocardiogram. But he could not explain the stiffness and hardness in my limbs. He sent me to rheumatology where, much to my surprise, the problem was said to be dermatological. I had developed very limited movement. I had a pigmented and hardened line on my forearm and shiny irregular skin along my shins.
I taught everyday, luckily in a school with no stairs. At night I came home to sleep on the couch before climbing the stairs on my fists. I could no longer open my hands and very interesting penmanship developed when I was attempting to mark essays.
In April I was prescribed prednisone. I have heard the nightmare tales but, despite some cosmetic yet nasty side effects, it became my saving grace.
Dermatology saw me for 'rounds' and that is where I first heard the many suggestions of Eosinophilic Fasciitis. I had developed a white shiny patch of skin on my back. I had biopsies taken of a patch of skin on my forearm and the patch on my back. The results for my arm were inconclusive as the first biopsy at this site was not deep enough and the second deeper one was taken when I had already been administered large starting doses of prednisone. My eosinophils in blood samples were 11%. The patch on my back was identified as generalized Morphea. It has not grown.
In June I was feeling better, due to prednisone and lasix. My feet were painful and I could not point my toes but I actually wore heels to a wedding! I started to call myself "Puff Jenny" due to a fat face. As a young female facing teenagers every day I was feeling embarrassed by this and dark facial hair. Being able to walk up stairs without much pain and only minimal awkwardness was a great gift to combat the vanity.
I stopped the lasix in the summer. I was dehydrated and constipated from calcium and did not seem to be edemic anymore. I stopped taking calcium in August, although I know I should take it (because I am a female on prednisone) but gas and constipation are nasty additions to a newlywed relationship!
To be truthful, my husband has been extraordinarily accepting of the rapid deterioration of my once charming and petite figure. I have gained about 18 lbs from the prednisone. My back and tummy are fatty, and because of my moonface, I jokingly say, "I'm storing nuts for the winter." But hey, I can make a fist!
Plaquenil was tried in September 2001, but I developed a skin rash. I am down to 5 mg (from 20 mg) prednisone a day and tapering off even more very soon. I have just ended a year of physiotherapy with ultrasound. I hear coming down from 5 mg of prednisone is the hardest. I am feeling hopeful and 'near normal'. Wish me luck!
| Jennifer Foster
Email: [email protected]
Story submitted 5-5-02
Story posted 5-6-02
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