by Laurie Wertich
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 rheumatic condition—a condition affecting the joints and soft tissues. It’s associated with widespread pain and fatigue. According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, fibromyalgia affects about 5 million U.S. adults, most of them women. The pain of fibromyalgia is described as “tender points”—specific areas of the body that hurt when pressure is placed on them. Tender points often occur on the neck, shoulders, back, and hips.
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.
Although the causes of fibromyalgia are not known, several factors may be involved in its development; these include traumatic events or accidents, repetitive injuries, illness, and certain diseases (such as rheumatoid arthritis, lupus, and spinal arthritis). The disorder, however, can occur spontaneously, meaning there is no direct cause or trigger. It is also thought that a gene or genes may be involved in fibromyalgia.
There is no laboratory test to diagnose fibromyalgia, and the main symptoms—pain and fatigue—make it hard to differentiate from other conditions. As a result, it may take more than one consultation with different doctors before a diagnosis is made.
To diagnose fibromyalgia, a doctor familiar with the disorder will use criteria established by the American College of Rheumatology (ACR). These criteria include a history of widespread pain lasting for more than three months, diffuse tenderness, and tender points at 11 or more of 18 sites designated by the ACR.
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.
Additional symptoms of fibromyalgia include:
- Difficulty sleeping
- Stiffness in the morning
- Painful menstrual periods
- Tingling or numbness in hands and feet
- Irritable bowel syndrome
- Temperature sensitivity
- Restless leg syndrome
- Cognitive or memory difficulties (“fibro fog”)
- Sensitivity to loud noises or bright lights
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 Physicians Alliance Network 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.1 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.
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Your first step in getting good treatment for fibromyalgia is to find a doctor with experience treating the disorder. Fibromyalgia can be hard to treat, making your physician’s familiarity with it important. Types of doctors who may have experience treating fibromyalgia include family physicians, general internists, or rheumatologists (doctors specializing in arthritis and conditions affecting joints and soft tissue). And because fibromyalgia can affect several aspects of your health, a team approach to treatment can be helpful—your doctor, a physical therapist, and possibly other healthcare providers may all contribute to your care.
Three medications have been approved by the U.S. Food and Drug Administration for the treatment of fibromyalgia. These are Cymbalta® (duloxetine), Savella® (milnacipran), and Lyrica® (pregabalin).
Medications approved for other conditions may be used to treat fibromyalgia and its symptoms. These include:
- Nonsteroidal anti-inflammatory drugs (NSAIDS) such as aspirin and ibuprofen
- Antidepressants (types include tricyclics, selective serotonin reuptake inhibitors, and mixed reuptake inhibitors)
- Medication to treat specific symptoms (irritable bowel syndrome, for example)
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 selfcare 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.
It’s Not in Your Head
Fibromyalgia is a real illness and one that is often misunderstood. Unfortunately, individuals with fibromyalgia are often labeled as hypochondriacs. “There are a lot of skeptics,” Michele says. “I’ve had a few people tell me that it’s not real, that it’s all in my head. But this is a real illness. It actually has a billing code.”
Dr. Teitelbaum insists that it’s important not to let any doctor tell you that “it’s all in your head.” The National Institutes of Health, the Centers for Disease Control and Prevention, and the FDA all recognize fibromyalgia as a real disorder.
If you or someone you love suffers from fibromyalgia, take the time to read and study the facts about the illness. A little understanding goes a long way toward relief.
Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS) refers to severe persistent tiredness that is not relieved by rest and is not directly caused by other medical conditions. CFS is characterized by exhaustion that lasts for a minimum of six months, unrefreshing sleep, cognitive impairment, headaches, and more. Physical exertion only exacerbates the problem— with CFS, even the easiest exercise can leave a person feeling extremely fatigued for more than 24 hours.
CFS and fibromyalgia typically go hand in hand. In fact, Dr. Teitelbaum refers to them as “two faces of the same illness.” An individual can have either CFS-predominant or fibromyalgia-predominant CFS/fibromyalgia. Treatment of both conditions is similar and relies on nutritional support, hormonal balancing, and sleep restoration.
Restless Leg Syndrome
Restless leg syndrome (RLS) is a neurological disorder characterized by discomfort in the legs and an irresistible urge to move to relieve the discomfort. Individuals who suffer from RLS experience what they describe as itching, crawling, or burning sensations in the legs. The symptoms grow worse at night and can drastically interfere with sleep. Individuals may kick the bedsheets (or, worse, their bed partner) all night or have to jump out of bed to stretch.
Many people with fibromyalgia suffer from RLS. Unfortunately, the sleep disruption caused by RLS can serve to exacerbate the symptoms of fibromyalgia. Some studies have shown that RLS can be associated with iron deficiency, and optimizing iron levels has been shown to relieve the symptoms. In addition, supplementing with magnesium at bedtime appears to help with RLS.
Complementary and alternative therapies may also help relieve symptoms and improve overall well-being among people affected by fibromyalgia. Examples include massage, acupuncture, and movement therapies like Pilates. Discuss these options with your healthcare team.
Although fibromyalgia is a chronic condition, it’s important to remember that it’s not a progressive disorder, meaning that the symptoms will not get worse. Some people even find that the condition improves over time.
- TheArthritisConnection Rheumatoid Arthritis Associated with Fibromyalgia
- National Fibromyalgia Association: fmaware.org
- American Fibromyalgia Syndrome Association: afsafund.org
- Fibromyalgia & Fatigue Centers: fibroandfatigue.com
- 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.
- Fibromyalgia. National Institute of Arthritis and Musculoskeletal and Skin Diseases Web site. Available at: http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp. Accessed July 2010.