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Personal Stories


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The following is an except from Taffy's Fibromyalgia Story


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".

She is so tired all the time. She is in her late 20's, all of her friends are married and have children. She wonders how they do it. It is all she can do to take care of herself, she can't imagine having a family to take care of. She decides to have her tubes tied. If whatever is wrong with her would just happen to be hereditary, she would never forgive herself if she passed it on to her children. She has a tubal ligation.

She is told that she can go back to work 2 days after her surgery. However, she is having severe pain in her abdomen, she is weak and feverish. She returns to her doctor, he tells her she is suffering from a flu bug. She returns to work, and over a 2 week period, the pains become worse, she is losing weight, and is still running a fever. After 2 more trips to the doctor, she has lost 15 pounds, and is passing out every time she stands up. Her mother takes her to the hospital, where it is discovered that she has an abcess on her ovary the size of a softball. She is rushed to surgery.

After surgery, it is discovered that there are no beds available in the Ob/Gyn wing of the hospital. She is placed in the orthopedic ward. When she wakes up later that night, she is horrified to find her bed soaked in blood. She makes her way to the bathroom, where she discovers that the blood is just gushing out of her. She rings for the nurse, who says to her (and I am quite serious here, folks) "Honey, I think you're just having a bad period." But the nurse promises she will call the surgeon. After an hour passes with no response, she calls her mother, who calls the surgeon at home. He had not heard from the hospital, and is there within fifteen minutes. Her stitches had burst, and she was bleeding to death. They had to give her a blood transfusion, and a bed was immediately found for her in OB/GYN.

She has gotten in the habit of taking NoDoz just to stay awake at work. She feels like she has the flu all the time. She finds a lump in her breast. She has a lumpectomy, and the tumor is found to be benign. Over the following year, she finds four more lumps. They are very sore. Her doctor finds twelve more lumps. She decides to have a subcutaneous mastectomy with reconstructive surgery. The surgery is the most painful thing she has ever gone through. But at least now most of the tissue is gone, and she won't have to worry about breast cancer.

In 1990, she is in an accident on a 3-wheeler; it tipped then ran over her leg. She had to have reconstructive knee surgery, and was sent home from the hospital after four days. The second day she was home she was running a fever of 104 degrees, and was put back into the hospital with an infection. She spent ten more days in the hospital recuperating from the infection, then spent the next eight months in Physical Therapy, and on crutches. More blood tests, which of course showed nothing wrong.

In 1993, she is stopped at a traffic light. There are four cars in front of her. A 1977 Thunderbird rear-ends her, pushing her into the car in front of her, totalling her (brand new) car. She tells police she is not hurt, just shook up. Two hours later, she can't move, her back hurts so much. Her boyfriend takes her to the emergency room. They take X-rays, tell her that her muscles are sprained and strained, give her Toradol, and send her home. This was on Saturday. By Monday, she still can barely move. Her doctor won't see her, as the pain was caused by an automobile accident, and he won't get involved because of litigation issues. She calls around and cannot find anyone to see her. Finally, she contacts an attorney who finds a doctor for her. She goes through a year of physical therapy, and is told by a rheumatologist that she has fibromyalgia, myofascial pain and chronic fatigue. She takes this information back to her Family doctor, and he laughs - tells her there is no such thing as fibromyalgia, it is the "new disease of the 90's". What is she to do - she is still in an HMO and has to use their doctors.

It is now 1997. She still has pain every day - back spasms, pain in her arms and hands. And she still is so 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. Her boyfriend begs her to go back to the doctor. She does. The doctor tells her that he suspects she has ......(you guessed it) fibromyalgia! Oh, that's the new disease of the 90's, right????? (she thinks to herself). He puts her on 25mg of Amytriptiline, taken at night. Within days, her pain has diminished to a tolerable level, but her fatigue has become worse. The Amytriptiline leaves her too groggy to work. He switches her to Zoloft, but it has the same effect. Finally, after six months, he admits that he does not know enough about fibromyalgia, and sends her to (large drum roll).......a rheumatologist!

She tells the rheumatologist that she can barely get out of bed in the morning, she has missed 20 days of work this year, and is in jeopardy of losing her job. She asks him to sign a Family Medical Leave Act form, and asks him for a handicap parking sticker. He refuses on both requests. He tells her that he feels fibromyalgia is not a disability, and that people with Fibromyalgia can and should work.

She is looking for a new doctor........again.

Taffy © 1998

Post Script: Two years ago I was having a horrible day at work, and stopped in a local pub to have a Coffee and Bailey's (a very calming drink for me). I just happened to sit next to a gentleman that I recognized from my neighborhood. We started a conversation, and enjoyed each other's company so much that the "drink after work" became a habit for us. A wonderful, fulfilling friendship developed, which later took us both by surprise by turning into the most wonderful love I could ever imagine. We were married August 9, 1997. He is my best friend, and he is reading everything he can get his hands on to learn about this disease that I have. If I am cleaning, or trying to do some laundry, he says "Now don't you overdo, you know I'll do that." I don't know how I ever survived without him.

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