Three years ago Michele Beck-Dark thought maybe she had the flu. Her body ached all over, and she was so exhausted she couldn’t get out of bed. But the “flu” never went away. In fact, Michele suffered from deep muscle pain, fatigue, headaches, and muscle spasms for more than two years, visiting doctor after doctor, until she was finally diagnosed with fibromyalgia.
Unfortunately, the story of Michele’s diagnosis isn’t all that unique. Many people who suffer from fibromyalgia live with chronic pain for years and consult an endless stream of healthcare providers before receiving a proper diagnosis. On average it takes about five years to be correctly diagnosed with the disorder, and even then an official diagnosis does not necessarily translate into a speedy solution.
In fact, Michele has had to redesign her busy life to include fibromyalgia. First and foremost Michele is a 43-year-old mom with three of her four kids still living at home. But now she’s a mom struggling with constant pain. She takes several medications and has drastically dialed back her expectations of how much she can do on any given day. She has good days and bad days. “I’m always going to struggle with it. It’s not going to go away,” she explains. “It’s kind of like a roller coaster.”
But how did Michele happen to board the fibromyalgia roller coaster in the first place? And how can she disembark? First it’s important to understand what fibromyalgia is—and isn’t.
Fibromyalgia is a chronic pain disorder characterized by widespread pain throughout the body, and it often occurs with overlapping conditions such as irritable bowel syndrome, chronic fatigue syndrome (CFS), lupus, and arthritis.
The list of symptoms associated with fibromyalgia is long and varied: pain, fatigue, anxiety, muscle spasms, sleep disturbances, restless leg syndrome, impaired memory, and much more. But the primary symptom is pain. This pain is unique in that it is not caused by inflammation and it occurs throughout the body. The pain typically affects the neck, shoulders, arms, upper back, chest, and buttocks. Individuals who suffer from fibromyalgia often have “tender points” of pain, which are localized spots that bring on widespread pain or muscle spasms when touched.
Fibromyalgia affects an estimated 10 million people in the United States—and more than 80 percent of those are women. When symptoms are severe, fibromyalgia can be extremely debilitating and can interfere with daily life.
The wide variety of symptoms and the lack of an apparent cause for their onset can make fibromyalgia difficult to diagnose. In a way, the disorder is diagnosed through a process of elimination. There is no single test for fibromyalgia. Instead doctors typically test for other things, such as rheumatoid arthritis and lupus, and as they begin to rule out other diagnoses, they circle around to fibromyalgia.
To be diagnosed with fibromyalgia, an individual has to have had widespread chronic pain in all four quadrants of the body for at least three months and must test positive for 11 of the 18 identified tender points.
Fibromyalgia is widely misunderstood by doctors and patients alike. The variety of symptoms and the lack of an apparent cause are part of what makes fibromyalgia so confusing—which is why it’s so important to seek out experts who really understand fibromyalgia and all of its nuances.
Enter Jacob Teitelbaum, MD, a board-certified internist and the medical director of the national Fibromyalgia & Fatigue Centers Inc. and Chronicity Inc. and one of the leading authorities on fibromyalgia and CFS. Dr. Teitelbaum earned his expertise the hard way—his interest was born of his own experience with CFS, which forced him to drop out of medical school for a year to recover. Since then he has dedicated his career to finding effective treatment.
Dr. Teitelbaum takes the jargon out of fibromyalgia-speak. The way he sees it, people with fibromyalgia have four core symptoms. “They are tired, achy, have brain fog, and can’t sleep,” he explains.
But what causes these symptoms? Dr. Teitelbaum describes fibromyalgia as an energy crisis for the body. “The body is spending more energy than it is able to make,” he explains. “It’s sort of like blowing a fuse.” The “circuit breaker” that goes offline in the case of fibromyalgia and CFS is the hypothalamus, which controls four key systems in the body: sleep, hormones, temperature, and the sympathetic nervous system.
Blowing a Fuse
How do you “blow a fuse” in the body? It’s not all that different from blowing a fuse in your home. Plugging the hairdryer, the curling iron, and the space heater into the same circuit is a recipe for disaster. Similarly, asking too much from your body can have drastic consequences. There are many ways you can blow a fuse, but some of the most common culprits are poor nutrition, sleep deprivation, chronic stress, hormonal deficiencies, infection, and even pregnancy.
While the medical literature indicates that there is no single, identifiable cause of fibromyalgia, Dr. Teitelbaum insists that there is in fact a pattern. He says the cause of fibromyalgia depends on the type of onset. If fibromyalgia symptoms arose suddenly, the trigger for the “blown fuse” was probably something like an injury, an infection, or a pregnancy. If, however, an individual experiences a gradual onset of fibromyalgia symptoms, the blown fuse is typically the result of hormonal deficiencies, autoimmune problems, or chronic stress.
Restoring Energy: Treating Fibromyalgia
When you blow a fuse in your home, you have to do more than simply flip the circuit breaker—you have to change the behavior that led to the blown fuse in the first place. The same is true with fibromyalgia.
Many people see fibromyalgia as a life sentence of pain and suffering, but Dr. Teitelbaum has seen patients improve dramatically with what he calls his S.H.I.N.E. protocol.[i] S.H.I.N.E. refers to five health guidelines that are critical for treating fibromyalgia and chronic fatigue syndrome:
- Sleep. Get adequate sleep each night (eight to nine hours), which may require a combination of prescription and herbal sleep aids.
- Hormones. Identify and treat any hormone deficiencies.
- Infection. Identify and treat infections, which compromise the immune system and can be a contributing cause or result of fibromyalgia and CFS.
- Nutritional support. Choose a healthy diet and supplement as necessary because poor nutrition can tax the body and play a role in fibromyalgia and CFS.
- Exercise. Exercise as able. Overexertion is not advised, but after 10 weeks on the rest of the protocol, individuals typically have more energy and are advised to walk and practice yoga.
Doctors who specialize in treating fibromyalgia are trained to look at the big picture and help patients address hormonal and nutritional deficiencies. Dr. Teitelbaum finds that a combination of prescription and natural medications can be helpful for bringing the body back into balance. Treatment of fibromyalgia is not one-size-fits-all; instead it’s important to devise an individualized treatment program that suits the patient.
There is no magic pill for fibromyalgia, but individuals who commit to regaining their health can experience drastic improvement in their symptoms. Lauren Roegele, a yoga instructor from British Columbia and the director of Yogo.tv, was diagnosed with fibromyalgia three years after she was hit by a car while crossing the street. Lauren endured debilitating pain and spiraled into a deep depression before she had an “aha” moment.
“I realized that I had started introducing myself as, ‘I’m Lauren and I have fibromyalgia,’” Lauren recalls. “I had started to identify with it. It became me. Finally, I asked myself, Am I fibromyalgia? Or am I Lauren who is in pain? That’s when things began to shift for me.”
At that point Lauren decided to leave no stone unturned. She began practicing yoga, changed her diet, reduced her stress level, and made self-care a top priority. Now she has been medication-free for three years and generally lives a pain-free life. She knows what her triggers are—stress, changes in weather, and being too busy—and she takes a proactive approach to managing her own health.
“The thing that really upsets me is that there is not a lot of hope offered in terms of fibromyalgia, so people almost give up on themselves,” Lauren says. “If I could tell people anything, it would be: ‘Don’t give up. Try everything. Try anything. Light a fire under yourself and go for it. Reach out to anyone and just try because you are worthy of the time and the effort and the money or whatever it takes to find relief. There is so much hope. You don’t have to be in pain and you don’t have to be exhausted all the time.’”
The Future of Fibromyalgia
There’s no doubt that the incidence of fibromyalgia is on the rise, and Dr. Teitelbaum attributes that to our fast-paced lifestyle. “We have sort of a perfect storm for an energy crisis,” he explains. “Fast pace, poor nutrition, and less sleep.”
That outlook may sound dismal, but we’re not doomed to live with chronic pain. Instead, Dr. Teitelbaum suggests seeing the illness as an opportunity. “Illness, even though it can be devastating, is actually a protective mechanism because it takes you out of the game and forces you into action,” he says. In fact, he insists that all illnesses have lessons.
What’s the lesson of fibromyalgia? Slowing down and saying no. “Do the things that feel good and say no to the things that don’t feel good,” advises Dr. Teitelbaum. It sounds like a prescription we might all want to take.
[i]. Teitelbaum JE, Bird B, Greenfield RM, Weiss A, Muenz L, Gould L. Effective treatment of chronic fatigue syndrome and fibromyalgia: a randomized, double-blind, placebo-controlled, intent to treat study. Journal of Chronic Fatigue Syndrome. 2001;8(2):3-28.