What does it feel like to live with fibromyalgia? “Imagine last night you drank more wine than you should have but had no water or food. You went to bed late and got up early, feeling stiff, achy, and tired,” says Chanchal Cabrera, a British herbalist, fibromyalgia patient, and author of Fibromyalgia: A Journey Toward Healing. People with fibromyalgia feel that way all the time, she says.
A truly mysterious ailment, fibromyalgia syndrome (FMS) involves chronic widespread muscle pain and fatigue. It affects about 2 percent of all Americans and accounts for 10 to 30 percent of all rheumatology consultations. FMS mainly afflicts people between the ages of 35 and 55 and occurs seven to 10 times more frequently in women.
And as if the pain and fatigue weren’t enough, a constellation of other symptoms often accompanies the disorder—foggy thinking, sleep disturbances, painful menstrual cramps (dysmenorrhea), and irritable bowel symptoms—making a clear diagnosis difficult. Although the cause of FMS continues to elude researchers, certain stresses on the body, such as intense exercise, illness, or a traumatic event, appear to intensify symptoms or even bring on the condition itself.
“My fibromyalgia was triggered by a car accident in 1991, when I was a healthy and fit 28-year-old,” says Cabrera, now 43 and living in Vancouver, British Columbia. “Within minutes of the impact, my neck and shoulders were in pain, and I had a dull headache. My slow descent into fibromyalgia had begun.”
The Body Blows a Fuse
Jacob Teitelbaum, MD, medical director of Maryland’s Annapolis Center for Effective Chronic Fatigue Syndrome/Fibromyalgia Therapies, likens FMS to the body’s “blowing a fuse” when its energy account becomes overdrawn. This short circuit results in hypothalamus suppression, Teitelbaum maintains. “The hypothalamus controls sleep, hormonal function, temperature, and autonomic functions such as blood pressure and blood flow,” he says. “The hypothalamus uses more energy for its size than any other organ, so when there is an energy shortfall, it goes offline first.”
“FMS has no single cause,” Teitelbaum says. He surmises that the hypothalamus decreases its protective function in the face of what it perceives as overwhelming stress, which can stem from infection, injury, or a stressful, emotional incident. “FMS patients seem to have genetic differences in the way their hypothalamus, pituitary, and adrenal regulation handle stress,” he says. “As a result, the muscles end up short of energy and in pain.”
Is There Hope?
Mary Shomon, now an author and patient advocate in Washington, DC, began to have symptoms of FMS at age 34, after two car accidents and numerous other health challenges. Through a holistic approach and alternative therapies, she finally found relief from her symptoms. However, 11 years later she still expresses dismay about the stigma and disbelief she encounters about fibromyalgia—particularly from the conventional medical community.
“Those of us who have suffered through it know firsthand that it is a very real condition,” Shomon says. “We didn’t dream it up or develop some psychosomatic syndrome, and we can’t just think it away, buck up, and feel better, or just ‘get over it’ by sheer determination. Some doctors—and even some of our families and friends—think that fibromyalgia is psychosomatic, evidence of laziness, or is due to some inherent emotional or character weakness.”
Conventional medicine has little to offer in the way of treatment, which frustrates patients and doctors alike. Mainstream physicians see FMS largely as an incurable condition (if they see it as a condition at all), so they focus on relieving pain and improving sleep—primarily with pharmaceuticals. Although both conventional and alternative healthcare providers may suggest exercise programs to improve muscle and cardiovascular fitness, along with relaxation techniques to ease muscle tension and anxiety, drugs remain at the forefront of conventional medicine’s arsenal.
Conventional practitioners often recommend nonsteroidal anti-inflammatory drugs (NSAIDs) like aspirin or ibuprofen for pain, and tricyclic antidepressants to improve sleep and mood. These drugs improve the symptoms to a certain extent but do not halt the disease. And they come with a hefty price: NSAIDs cause bleeding in the stomach lining and may affect kidney and liver function, particularly when taken long-term. Antidepressants carry a host of potential side effects, including anxiety, nausea, weight gain, and constipation. And, at the end of the day, they don’t alleviate the disease or provide any hope for long-term relief. In contrast, a new breed of alternative practitioners, including Teitelbaum, thinks that FMS can be cured. They aim to get at the core issues and turn the disease around with alternative therapies.
The Search for Sleep
Sleep is a primary concern for anyone with FMS. Ninety percent of patients awaken multiple times a night, and even if they make it through the night, they rarely sleep deeply enough to feel rejuvenated. Other symptoms may disrupt sleep as well, such as restless legs syndrome (twitchy, cramping legs that cause pain and sleeplessness), irritable bladder, and nocturnal myoclonus (jerky muscles).
Scientists have long known that fibromyalgia involves “disregulated sleep physiology,” or alpha rhythm disturbances occurring during the night and resulting in light, unrefreshing sleep. “If you don’t get eight to nine hours sleep at night, your pain will simply not go away,” says Teitelbaum. “Deep sleep is when you make growth hormones, recharge your batteries, and get rid of pain,” he explains. Teitelbaum’s first line of defense against disturbed sleep is L-theanine (it must be the “L” form). He advises 200 mg at bedtime.
“L-theanine is fantastic,” Shomon says. “With L-theanine, I can sleep without waking up groggy.” Teitelbaum also recommends low-dose melatonin—a maximum of 0.5 mg per night—to encourage a normal sleep cycle. Because sleep is so critical to healing, Teitelbaum may occasionally prescribe sleeping pills, but only as a last resort.
For Cabrera, sleeping and healing went hand-in-hand: “Melatonin really helped give me a deep, long sleep.” After her diagnosis, Cabrera had to quit work and pretty much rested and slept for a year. “I slept 12 to 14 hours per night, plus naps,” she says. “I still use melatonin every night, but now I take a small dose of 0.3 mg.” Cabrera has to watch herself closely, however. “With less than ideal sleep even for one night, some FMS symptoms will return, but I now can reverse them right away,” she says.
A New Sugar for Energy
But no matter how much they rest, people with FMS never seem to have enough energy. That’s not surprising, since research shows FMS sufferers have lower levels of ATP (the body’s cellular energy molecule) along with a lowered ability to make it. But exciting new research with FMS patients shows that supplementing with D-ribose (often just called ribose), the body’s cellular fuel, can help the body replenish ATP.
A natural sugar, ribose occurs in all living cells. “Ribose is the key building block for making energy,” says Teitelbaum. “In fact, the main energy molecules in your body are made of ribose, plus B vitamins and phosphate.” Our bodies acquire ribose through diet—brewer’s yeast has a rich supply—and the body also makes it from glucose in food. This is a slow process, however, that cannot always keep up with the energy lost in daily activities, so it may take several days to restore the lost ATP—and possibly much longer for those who suffer with FMS.
Scientists know that supplemental ribose can reduce muscle pain, stiffness, and exercise fatigue; that people tolerate it well; and that it has no side effects. Armed with this knowledge, Teitelbaum conducted a recent and very promising ribose study in FMS patients. They took 5 grams of ribose three times a day, for an average of 28 days. In just 12 days, 66 percent of those taking ribose had significant improvement in energy, sleep, mental clarity, and pain intensity, with a 44 percent average increase in energy and an overall 30 percent increase in well-being. Although the study is preliminary, with results this positive, look for additional research on ribose soon.
A Different Kind of Cocktail
Could a simple injection cure FMS? As it turns out, one nutrient concoction just might. The Myers Cocktail (named for John Myers, the physician who invented it), an intravenous micronutrient treatment containing magnesium, calcium, vitamin B complex, and vitamin C, has been used to treat fibromyalgia for 20 years. Like ribose, these safe nutrients promote cellular energy production and pump up ATP production, according to a study published in Alternative Medicine Review. “We have good clinical success with this treatment to reduce pain and promote detoxification,” says Virginia Hadley, RN, nutritionist at the Tahoma Clinic in Kent, Washington.
Yale researchers recently tested the Myers Cocktail on a group of 40 patients ages 18 to 75 in a double-blind, placebo-controlled, randomized trial. They gave one injection a week for eight weeks through a large syringe containing 37 ml (about 7 teaspoons) of nutrient solution. The mixture was injected slowly over about 20 minutes. The yet-to-be-published study measured tender points, depression levels, and quality of life. “This three-month pilot study showed significant improvements in all pertinent outcome measures with the Myers Cocktail and none with the placebo solution,” reports David L. Katz, MD, associate clinical professor of epidemiology and public health at Yale University. The study participants still had less pain a month after the last injection. “Our results strongly suggest that Myers Cocktail may well offer therapeutic benefit in fibromyalgia. In the interim, we will continue to offer it to our patients,” says Katz.
Take a Little Needling
Many people with FMS get hooked on acupuncture, and for good reason. Numerous studies show the positive benefits of acupuncture for pain relief. One landmark study appeared in the June 2006 Mayo Clinic Proceedings. This randomized, controlled trial, led by David P. Martin, MD, an anesthesiologist from the Mayo Clinic College of Medicine in Rochester, Minnesota, reports on 50 FMS patients, half of whom received acupuncture; the remaining 25 received sham acupuncture, which involved needles inserted at non-therapeutic points. After just six treatments spread over three weeks, the acupuncture patients reported significant improvement in symptoms, particularly fatigue and anxiety, lasting up to seven months. One month after treatment, those treated with “true” acupuncture had less fatigue and fewer anxiety symptoms than the sham acupuncture group.
Exercise More, Stress Less
A regular, gentle, exercise routine stands out as indispensable for FMS—to increase flexibility and reduce pain and stress. The severe pain that usually accompanies FMS makes it difficult for many sufferers to begin and maintain an exercise program. That’s why programs with gentle stretches and movements, such as therapeutic yoga, Pilates, and t’ai chi, are often a good fit for FMS patients.
Shomon finds tremendous relief with Pilates. “My body was often a knot of aches and pains—especially in my neck, shoulders, and lower back,” she says. “But I started Pilates for two one-hour sessions a week. It was life-changing. Gradually, I gained strength, my constant body pain faded, and I was able stop my daily doses of ibuprofen.” Shomon has been doing Pilates for about four years and says she rarely has body pain.
Yoga also eases muscle pain and stiffness. In a six-week randomized pilot study, researchers looked at a yoga program modified for FMS chronic back pain. The program improved balance and flexibility and diminished disability and depression.
Then there’s some shocking news. According to Carolyn McMakin, a chiropractor in Portland, Oregon, and an active proponent of microcurrent therapy, electricity can help zap FMS. Microcurrent therapy increases the rate of healing for injuries and fractures and controls muscle pain. According to McMakin, delivering microamperage (50 to 100 microA) electrical current to a patient increases ATP concentrations up to fivefold in the body.
Electricity can relieve pain in other ways, too. Transcutaneous electrical nerve stimulation (TENS), which first appeared in scientific literature around 1975, relieves pain by sending low-voltage electrical signals to nerves with a battery-powered device. TENS, used mainly by physical therapists but also by some MD pain specialists, is thought to work because the electricity stimulates the nerves in an affected area and scrambles normal pain signals. It also may help the body produce natural endorphins. One 2005 study looked at 218 chronic pain patients. After receiving TENS twice a week for six weeks, the patients had substantial improvement in disability and pain, which they maintained at a six-month follow-up exam.
While everyone hopes for a cure for FMS, that magic bullet that puts an end to the disease, all these different therapies and a number of lifestyle adjustments make the disease manageable. “People must change their lifestyles to make any progress,” Cabrera says. “Fibromyalgia involves a host of factors and an internal complex of concerns. Even though I am an herbalist, and I know herbs help, the entire answer doesn’t lie in substances.”
And Shomon adds, “There’s clearly no conventional medical cure or just one surefire treatment. What seems to work the best is a combination of customized tactics that focuses on ensuring quality sleep, reducing pain, increasing flexibility, improving metabolism, and reducing stress.”