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Just a normal teenager with an invisible disability: A struggling high schooler's story By
Anna Brunson Emily, 18, looks like any other high school senior ready to move on to college. She is excited to graduate in May and attend Utah State University in the fall. She has big plans for the future. She is just a normal teenager. Except that she has to prop her elbow on her dresser to prevent her arm from shaking while she does her makeup. Except that her friend Stephanie carries her books for her at school. Except that she sometimes sits on the floor in class to be comfortable. Except that her boyfriend broke up with her because he couldn't deal with hurting her when he touched her. Emily, who asked that only her first name be used, is just like every other high school graduate. Except that she has fibromyalgia. "Fibromyalgia is a condition without a known cause and without a cure. It's been called the invisible disability, the irritable everything, supermom syndrome and even whining women's disease," says the Tampa Tribune. It is estimated that one out of 20 people suffer from fibromyalgia (almost four million in the United States), but it is hard to determine, because more than 50 symptoms are associated with the syndrome, says the Tampa Tribune. In fact, the London Guardian reports that some doctors believe that fibromyalgia, chronic fatigue syndrome, and even Gulf War Syndrome are one and the same. Up until a decade ago, many people with the nondescript symptoms of fibromyalgia were mistaken for hypochondriacs. Symptoms of firbromyalgia include anything from sleep disturbances, severe fatigue, and decreased endurance to headaches, abdominal pain and bladder spasms, says the St. Louis Post-Dispatch. "Fibromyalgia fog" is another common symptom of the disease, where sufferers are unable to concentrate and often forget simple thoughts and tasks. Fibromyalgia feels "as though I'm wrapped in barbed wire. I'm in constant pain. It's the strangest feeling because it's not joint, not muscular," says Robin Crossland, 54, in the St. Louis Post-Dispatch. Emily knows that feeling all too well. "It's unpredictable where my pain will be. In the past six months, it's moved to my back, and in the last month, it's gone to my wrists, too. I never know what will hurt; I just know that it will," she says. Because there is no cure, people suffering from fibromyalgia have been hunting for treatments that will help them manage the pain, and Emily is no different. While other teenagers surf the web for games, chat rooms and pop culture, Emily reads the latest medical news concerning fibromyalgia. Emily's research found that fibromyalgia can follow physical trauma-45 percent to 70 percent of cases surface after an accident or injury, says the Tampa Tribune. That's what happened with Emily two years ago. "The real problems started after I had surgery on both knees [for an unrelated health problem]," says Emily. "I started feeling some pain, but it was still really under the surface. It wasn't until I was in a minor car accident the next month [September] that things really changed. "I could feel it within the space of two to three hours. I felt normal, and then my joints felt like a squeaky door hinge. It felt exactly like I imagined arthritis to be like. Over the next two weeks, I felt a lot more pain, and I had trouble with so many things, such as just concentrating. My arms and shins would tingle and burn, and a finger on my skin felt like sandpaper," says Emily. Her mother says, "It just seemed that everything was magnified. Emily would be leaning against the counter, and she'd say it felt like she was being stabbed in the back." Although the cause of fibromyalgia is not known, doctors believe that the syndrome has more to do with the brain than the body. Seratonin is a chemical in the brain that regulates people's moods, keeping them balanced and substance-P is a neurotransmitter that enhances the body's pain. People with fibromyalgia often have half the serotonin and twice the substance P of normal people, says NewsRx.net. This same chemical imbalance causes clinical depression. In fact, fibromyalgia may bring on anxiety and depression or come about because of these conditions, although doctors aren't sure why, says the St. Louis Post-Dispatch. "I was frustrated and upset-and depressed. At first, I thought it was just because I didn't know what was going on with me," Emily says. That November, Emily's physical therapist recommended that she see a doctor for her pain. Emily had heard of fibromyaglia before-her aunt suffers from it, but her symptoms are mostly gastrointestinal, and she is only able to eat rice and vegetables. But, when the doctor started asking questions and listing common symptoms, it became clear to Emily and her parents. "The doctor was reluctant to diagnose it without doing more tests, but we knew. We knew," says Emily's mother. There are 18 "trigger points" on the body, such as the middle of the knee joint, the muscles at the base of the skull and on the side of the elbow. To be medically diagnosed with fibromyalgia, the patient has to feel pain when she is touched at 11 of 18 trigger points with just the pressure that one would used to push an elevator button. Emily felt pain at almost all of them. Emily's doctor ruled out other illnesses such as arthritis and lupus with blood tests. Emily was diagnosed with fibromyalgia. She started trying to get better right away. In the end, "you end up with your own bag of tricks - not everything works all of the time, but there is always something that will help," says Crossland in the St. Louis Post-Dispatch. Emily's "bag of tricks" has varied widely over the past few years. She brought out some of her treatment "souvenirs" and spread them out on her kitchen table: six orange prescription bottles, a few larger white ones, another box of sample pills, gigantic multi-colored rubber bands, packets of reading material and a tube sock with a tennis ball in it. Right now, Emily takes a medicine cocktail to keep her going. First, she takes 600 mg of Ibuprofen three times a day and nine Advil caplets. "At first the doctor had me take 800 mg a day, but that was just too much for my body weight," Emily says. She takes one small pink pill called Paxil, which is an antidepressant that helps her relax and concentrate. She started with small doses and added a little bit each week. "As I started taking it, I could actually feel weird stuff going on in my brain," Emily says. To stop taking the medication, she has to come off it gradually as well. Paxil makes her body shake uncontrollably, especially her hands and legs. It makes it difficult for her to play piano, crochet, write and climb stairs. "I was off it for a few weeks. It was bad, but my piano skills grew leaps and bounds without the shaking." Emily takes a Lortab to sleep at night. It looks like a large Certs mint, and Emily's mother says she read that some high schoolers think it's the latest thing to get high on. Emily tried to replace Paxil with Serzone (a white hexagon-shaped pill), but it made her so sick that she missed a week of school and went to the emergency room. She has tried Neurontin and Metoclopramide, new and expensive drugs to stop her shakiness, but they both made her nauseous and dizzy. She's tried Amitryptaline, and she can't even remember what that was supposed to do. Although Emily has gained the vocabulary of a local pharmacist, she still hasn't found a truly effective treatment for her pain in medicine alone. "Exercise, though, is really important. Walking, stetching-it hurts, but it's usually beneficial," Emily says. "In the morning I stretch and do yoga, calf exercises, and bike riding." Sometimes she stretches with her TheraBands‹big rubber bands made out of the same material as birthday balloons. Each different color provides a different amount of resistance. Emily has also learned to give herself accupressure treatments with a fabric tube with a tennis ball in it. She leans against a wall with the tennis ball against her back and slowly controls the movements of the ball with the straps to massage her back. In addition to her daily exercises, Emily goes to the University of Utah Pain Clinic every week and meets with a doctor ("He just keeps asking me, 'Why are you better yet? What's wrong with you?'"), a psychiatrist ("She didn't do anything that my friends couldn't do."), a pharmacist and a physical therapist ("He's nice, but I think he's basically given up on me."). While at the clinic, depending on her pain that day, she will have pool therapy, paraffin wax dippings or massages. "Emily's search for relief is exhausting for anyone, let alone a teenager," says her mother. She has gone to a fibromyalgia support group; she's had her heart monitored; she's had an overnight sleep test. Nothing seems to work. Her latest "trick" has been trigger point injections. She lifts up the back of her shirt to expose a back speckled with yellowing bruises and multi-colored band-aids. Emily gets four to eight shots of anesthetics and steroids in her back where the pain is most severe. "So far, it's worked pretty well," she says. "The biggest part is understanding and coping with the disease," says Crossland in the St. Louis Post-Dispatch. Emily agrees. Out of everything in her bag of tricks, she says the best tool is just determination. Emily has been playing the piano for nearly a decade and she had dreams of becoming a concert pianist. Although the physical practice required will make a career impossible, she pushes herself to practice on a daily basis. "It's hard to decide to do things, because I know it's going to hurt," she says, "But I am just more determined to stick with the piano. I have a huge passion for it. Unfortunately, I don't have the same passion for doing the dishes or yard work." "Overall, she's just had to try and manage it," says Emily's mother. "She basically just tries to live as normal a life as possible. And she really does." Most people don't recognize when other people have fibromyalgia. In fact, although Emily knew one of her aunts had fibromyalgia, she mentioned it to another aunt who said, 'Oh yeah, I have that too.'" "I really seem normal on the surface," Emily says. "Most of my friends really don't know that I have it. Sometimes I'm glad people can't see I have it, so they don't feel sorry for me. But sometimes I wish people could see it, so I wouldn't have to explain why I can't do some things." Emily is just like any normal teenager. Except, she says, she's been blessed with fibromyalgia. "It is hard to live with, but it has taught me patience, self-determination, motivation and persistence."
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