A Girl Who Lives with Fibromyalgia Syndrome Speaks

The 11-year-old 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.

She has 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.

She has 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.

She goes 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.

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