Kyla Perry

You’re Too Young to Be Tired: Examining Fibromyalgia from a Teenage Perspective – by Kyla Perry

In the beginning, it was just my arm. The sharp pain that coursed through from shoulder to elbow to fingertips would strike at the oddest times. I wasn’t especially athletic, and although I spent a lot of time at the computer, I didn’t see how that could be enough to engender this hot, sporadic pulse.

But at sixteen, I had other things on my mind: working the yearbook and newspaper staff, homework, football games, and the thousand other things essential to a teenager in high school. Frankly, I was more interested in seeing how late I could stay out without getting in trouble than seeking out the source of some random pain.

Then I lost feeling in my wrists, ankles and knees. It never lasted longer than 15 minutes or so, but that dull bloodless feeling started tingling in my joints more and more often.

That was weird. I started to think about it – mostly at night, as I wasn’t sleeping so well. It seemed my bed had gone on strike. Getting comfortable enough to sleep was as likely as waking up to one day looking like Kate Winslet.

Then there was the hot-poker neck pain, and the stabbing shoulder and hip pain. My body ached top to bottom. Even my face and scalp hurt.

The year I turned sixteen, my mother was diagnosed with fibromyalgia. I hadn’t paid much attention to the specifics until I began to realize, about six months later, that I was experiencing the exact same symptoms. The pain, the sleeplessness, the frenetically twitchy legs, the exhaustion, the feeling that each limb had been strapped with a fifteen pound weight.

Slowly, it clicked for me that a normal teenager shouldn’t be crippled by piercing headaches every day at sixth period. She shouldn’t have the energy level of a sloth and yet be unable to sleep. She shouldn’t wince as she settled into her hard school desk because it hurt to sit against the solid metal, or feel like a voodoo doll with no way of knowing where the pins were going to stab next, or how long it would last.

What was remarkable about me was my age. In 2001, when I was diagnosed, fibromyalgia was considered a middle-aged woman’s syndrome. The theory was that fibromyalgia, which was also called fibrositis, myofascial pain syndrome and chronic fatigue syndrome in turns, was triggered by a traumatic event, whether it be physical or emotional. Because of that, nearly half of the doctors I spoke to reached a point during our consultation at which they paused, fixed me with a Look, and asked sympathetically, “Are you feeling depressed?”

I wasn’t — unless you counted feeling depressed about constantly being in unrelenting pain. But as a teenage girl complaining of sleeplessness, aches and the blahs, convincing doctors of that was more difficult. Thus came Lexapro, Effexor, and a few others that did little more than make me feel mentally fuzzy. It wasn’t long before my primary care physician conceded that depression wasn’t the problem.

The official diagnosis only came after blood tests discounted every other possibility, and after my doctor had palpated my body to determine whether I possessed any of the 18 specific bilateral “tender points” indigenous to the disorder. He found 16 out of 18: I passed with flying colors.

And so it was that after a flurry of doctor’s visits, blood tests and the full gamut of poking and prodding, I too was diagnosed with fibromyalgia. At the time, the most he could do was prescribe sleep aids and pain medication, recommend exercise and massage therapy, and refer me to a rheumatologist.

I returned to school armed with pain pills and vague information about a disorder no one had ever heard of. Daily life quickly became a fight, not only against my own traitorous body, but the bewildered perceptions of others. How was I supposed to answer statements like “But you look fine!” “You’re too young to be tired!” “It must not be serious, then. You don’t look like anything is wrong with you.” “You just need to work harder.” (On the last one, feel free to insert variables like, ‘…to get more rest,’ ‘…to not be so lazy,’ ‘…to stop thinking about it’ or ‘…to not be so overly dramatic.’)

I was one miserable kid. My body was turning against me; I couldn’t count on it. My teachers thought I was exaggerating, acting sick for attention, or in need of an earlier bedtime. My friends looked puzzled, nervous and slightly panicked, and tried to act like nothing had changed. I was trying to do the same thing, pushing myself abusively past my new limits in an attempt to prove I could still do it. But my biggest problem was that I couldn’t explain it, because nobody seemed to understand it.

I had so many questions, and so few answers. Had I inherited it from my mother? Why had it just appeared out of nowhere? What caused fibromyalgia? How could I get rid of it? And how was a teenager who craved late nights with her friends and all the other physically careless joys of youth supposed to cope with, now, hardly being able to carry a backpack because it hurt so much?

My early research presented me with conflicting ideas. Some said it was musculoskeletal. Some said it was psychosomatic. Many said it was just all in my head. A few pointed to nutrition and environmental toxicity.

But that was then. Now, seven years later, great strides have been made in understanding fibromyalgia – and this particular sufferer has learned a great deal.

The Mayo Clinic defines fibromyalgia as “a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points.” The Clinic’s common symptom list includes widespread pain, fatigue and sleep disturbances, irritable bowel syndrome, headaches and facial pain, heightened sensitivity, numbness or tingling sensations in hands and feet, difficulty concentrating, mood changes, painful menstrual periods, dizziness, dry eyes, skin and mouth, chest pain and depression. Fibromyalgia is considered a chronic syndrome — not a disease, and certainly not deadly.

With the recent FDA approval of Lyrica (pregablin) for fibromyalgia, the theory of fibromyalgia as a nervous system-based disorder is gaining strength. The idea goes that, possibly due to trauma, the pain receptors in a fibromyalgia patient fire constantly, even though there is physiologically nothing wrong with the surrounding area. Thus a fibromyalgic may experience pain from head to toe but be otherwise healthy and uninjured. Lyrica, which comes in 25, 50, 75 and 100 mg doses, is believed to reduce these pain signals.

From my experience, the two theories of fibromyalgia – nervous and muscular – fit together nicely. If the nervous system is misfiring, the areas around those nerves, particularly joints and muscle tissue, are likely to become irritated, leading to inflammation, tenderness and stiffness – symptoms usually associated with rheumatoid conditions, but often found in fibromyalgics.

How then to understand the cause? Comparing notes with my mother revealed some interesting facts. In college, she contracted mononucleosis, in her case caused by the Epstein-Barr virus. According to January Payne’s 2008 article on http://health.usnews.com, “Research has shown that a subset of people who get Lyme disease, parvovirus, or Epstein-Barr virus-which causes mononucleosis-may later go on to develop” fibromyalgia. “‘What we think is that viruses are one type of biological stress’ that may act similarly to physical trauma, a known trigger for fibromyalgia and chronic fatigue syndrome, says Daniel Clauw, a rheumatologist and professor of medicine at the University of Michigan. ‘There’s a lot of different biological stresses, including psychological stress, that seem to be capable of triggering these illnesses.'”

Is there a clear connect-the-dots correlation? Not so far, but in Mom’s case, the symptoms she ignored most of her life started at that point. Did something particular cause the fibromyalgia to finally surface to a level she couldn’t ignore? She believes so, as looking back, she realized that her symptoms truly intensified after a hysterectomy.

So much for the trauma-trigger theory. But what about young, healthy 16-year-old me?

There is as yet very little evidence as to whether or not fibromyalgia is hereditary. My sister, two years my senior, does not have it. However, looking back at my history, I found terribly strong support for the possibility that my fibromyalgia began in infancy. I was born nearly a month premature, delivered via Caesarian section, and had to be incubated due to breathing and eating problems. Could it be that such a traumatic birth triggered a predisposition in my nervous system? It seemed plausible, although at this point there is no way to know for sure.

It wasn’t hard to see the signs that had exhibited themselves in my childhood. I had a strong aversion to rough play, especially tickling, because it hurt so much. I was sensitive to bright lights and harsh noises, and was the kid who voluntarily climbed in bed, both for naps and at night. And interestingly enough, while I liked fast food and soda as much as any kid, I at times avoided it because I knew that afterward, I was going to ache all over. (Considering that now, I hypothesize that the strongly chemical makeup of sodas, artificial sweeteners and fast food has a potent effect on internal chemistry, strengthening pain signals. Scientific study, anyone?)

But the whole package hadn’t really opened until I was sixteen. Research on the Internet showed me I was not alone. Sixteen was a common age for symptoms to kick in. Considering the predominance of fibromyalgia in women, its tendency to trigger around puberty (sixteen was, for me as a slow developer, a hormonal peak), and the suggestive idea that fibromyalgia could be triggered by something like menopause, or in my mother’s case, a hysterectomy – something with strong hormonal effects – creates a suggestion that sex hormones have a bearing in fibromyalgia.

Since Lyrica, I am even more inclined to this view. As a young, healthy woman in my early twenties with no history of sexually transmitted diseases or any reproductive diseases who has never been pregnant, I find it interesting that Lyrica worked immediately for me. Within a half hour of my first trial dose, I was completely pain-free.

However, it did not work for my mother, or for two of my acquaintances who fit the same demographic: mothers, post-menopausal, with a history of some sort of reproductive surgery or reproductive or breast cancer.

As of 2000’s study of sex hormones and fibromyalgia, conducted by S. Akkuº, N. Delibaº and M. N. Tamer at the Süleyman Demirel University Medical School in Isparta, Turkey, conclusive evidence of the correlation is still lacking. The study simply concludes, “Further clinical and experimental studies are required to determine the role of sex hormones in the pathogenesis of this condition.”

Ultimately, the causes of fibromyalgia are still up for grabs. While the fibromyalgia sufferers I have been privileged to meet are varied in race, age, sex and background, however, there are still some strong correlations.

In addition, there are some strong things in common, like intolerance for highly chemical substances, coated tongue and dry mouth, periodic trembling, a tendency toward TMJ (temperomandibular joint syndrome) and shallow breathing, and of course, unpredictable menstrual cycles. Small things, true, but perhaps one day a line will connect more of the dots.

For me, now, Lyrica has been a huge step forward. In the interest of not promoting, I will simply describe the effect it has had on me.

Imagine being in a crowded bar humming with conversation, while a band plays in the back and the person on the bar stool next to you is shouting in your ear. You are overwhelmed by noise, so much that you can’t distinguish one word from another. Now take away the band and the crowd of people. True, you’ve still got your barmate yelling in your ear, which isn’t pleasant, but at least you can understand what he’s saying. At least now you can hear yourself, and you can think enough to tell him to lower his voice.

For me, Lyrica took away the background noise – the constant, underlying, head-to-toe pain that I had gotten so used to dealing with, I had almost forgotten it was there. I still experience specific pain, but I am not so overwhelmed and exhausted that I cannot deal with it.

Other prescription medications that have been used for fibromyalgia include Tramadol (Ultram), a pain reliever; duloxetine (Cymbalta) and venlafaxine (Effexor), antidepressants; and cyclobenzaprine (Flexeril), a muscle relaxer. Doctors may also prescribe sleep medications; Ambien and Lunesta are popular choices.

But outside of prescription meds, the following list of essentials comes directly from the Mayo Clinic:

  • Reduce stress. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. But try not to change your routine completely. People who quit work or drop all activity tend to do worse than those who remain active. Try stress management techniques, such as deep-breathing exercises or meditation.
  • Get enough sleep. Because fatigue is one of the main characteristics of fibromyalgia, getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping.
  • Exercise regularly. At first, exercise may increase your pain. But doing it regularly often decreases symptoms. Appropriate exercises may include walking, swimming, biking and water aerobics. A physical therapist can help you develop a home exercise program. Stretching, good posture and relaxation exercises also are helpful.
  • Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days.
  • Maintain a healthy lifestyle.Eat healthy foods. Limit your caffeine intake. Do something that you find enjoyable and fulfilling every day.

I heartily agree with all of the above. I’ve tried them. They help.

The problem is, fibromyalgia just has a tough bottom line. There are treatments, but there is no cure. And it is not easy to live with.

It is fair to say that fibromyalgia killed my adolescence. I struggled with the pain and the exhaustion, as well as the emotional upheaval caused by the realization that a) this was never going away, and b) I could not be a ‘normal’ teenager. I had to limit myself, take care of myself, slow down. The ambitious, idealistic teenager I was did not want to accept that, nor did she want to appear different or even worse, weak, someone needing to be taken care of.

All of those things I had to eventually reconcile with.

My endurance now comes from my family, who has always done everything possible to help, and a fiercely loyal group of friends who, despite my fears and astonishing all my expectations, find nothing unusual, pitiable or inconvenient in having a friend who has to leave parties early or who has to be urged to rest, take medication, eat something, and talk about it. My support group is my biggest help, and it is a necessity for anyone dealing with fibromyalgia. Because, as a friend and fellow fibromyalgic told me tearfully, when no one understands, “you truly start to think that it’s all in your head. You start to believe them when they say you’re crazy.” It is easy to see how vital an understanding, empathetic support group is.

All this I have learned since I turned sixteen. Myself now a licensed massage therapist, I have learned to utilize massage therapy, acupuncture, chiropractic care and nutrition to reduce the pain and fatigue and to maintain my day-to-day ability to cope. Equally important as a support group is self-education. Learn about your options. Investigate natural alternatives like detoxification and hydrotherapy (hot baths work wonders). Read about natural supplements that can help counteract symptoms, like the ever-popular enzyme CoQ10 and glucosamine and chondroitin. Understand your body’s need for vitamins and minerals, basics like calcium, magnesium, vitamin D and others. The only way to beat this is to understand it – not only the condition, but the body itself.

I’ve learned to pace myself, to set personal limits, and not to push myself when I know I can’t. At the same time, I’ve learned that exercise and physical activity are vital to well-being. The fatigue cycle tempts fibromyalgics to stay in bed when feeling bad. Unfortunately, long periods of inactivity can merely exacerbate the problem. I walk a delicate balance: pushing myself to exercise, tending toward low-impact options like swimming, Pilates, elliptical and light resistance training, and letting myself rest.

Equally important is finding something to enjoy. Pain is depressing. Constant pain is suffocating. It doesn’t matter if it’s a hobby like reading or painting, getting outdoors in the sunshine, or even something silly like finding energizing music and dancing in your living room – just find something for yourself that keeps you going. When every day in the future promises to be painful, fibromyalgia sufferers need something to look forward to.

And I have a feeling that for many others, like me, that something is simple: the time when things will advance until we can, at long last, live a day without pain.

I don’t care how old you are — that’s something we all want.

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