A Girl Who Lives with Fibromyalgia Syndrome Speaks
girl is in tears again. Why doesn't her Phys. Ed. teacher understand that
running laps around the schoolyard hurts, it makes her legs feel like they are
ready to give out? The rest of the class has finished their laps already, and
are choosing teams for kickball. She knows that she will be the last one chosen
anyway, no one ever wants her on their team. They call her a wimp, and make fun
of her because she can't keep up. Here comes another "F" on her report
card. Every year it's the same thing - all A's and B's, except gym.
just started her sophomore year in high school. She is sooooo relieved. Physical
Education is no longer a required class. Now maybe she can make the honor roll.
She graduates with honors, and is given an academic scholarship. She has to maintain a 3.0 average - no problem, she thinks. However, she notices that when climbing the stairs to her 3rd floor history class, her legs feel like they are on fire. And she gets soooo tired......she can barely stay awake through class. She goes to the Student Health center, where they do a number of tests. The doctor tells her she has hypoglycemia, and sends her to a dietician. The stairs still hurt, she still is tired all the time, she is having headaches, and just doesn't feel well. She loses her scholarship.
dropped out of college, and is now working full time as an inventory control
specialist for a staple gun manufacturer. She is missing a lot of work. Her
doctor tells her that there is nothing wrong with her but depression and
anxiety, and gives her Valium, Dalmane and an anti-depressant. She is walking
around in a fog, and getting sicker and sicker.
to a new doctor. He tells her she has Myasthenia Gravis. FINALLY, someone
believes her, and is doing something about it. She starts taking Mestinon. She
starts going to support group meetings, is even elected to the Board of
Directors for the Myasthenia Gravis Foundation. Except......she isn't getting
any better, and starts having violent reactions to the Mestinon.
She has a
new job now, as a Computer Operator. The new company has an HMO, and she has to
find a doctor in their network. The new doctor tells her that she does NOT have
Myasthenia Gravis, and never DID have MG. He runs several blood tests, and finds
nothing wrong. She finds another doctor. He tells her the same thing. She is
told that she is suffering from anxiety and depression. By now, she is so weak,
she can barely lift her feet off the ground when she walks. She is having
migraines, her jaws hurt when she eats, she is suffering from irritable bowel
syndrome, and her muscles ache all the time. But the doctors say "there is
nothing wrong". Her blood
tests are clear.
It is now 1997. She still has pain every day - back spasms, pain in her arms and hands. And she is still tired all the time. But the worst pain comes at night, when she is finally trying to relax. The pain sears through her arms and legs, her muscles start to spasm, her legs and arms start jerking, she can't control it.