By James J. Gormley
Five years ago, Michelle Oliva sustained a severe whiplash injury during a car accident. Despite receiving treatment, Oliva, then 23, was bedridden for six months and vomited daily. “I had extreme exhaustion, insomnia, muscle spasms, cramping through my whole body, and migraines that were off the charts,” she says. Desperate to discover what was still so wrong, she consulted more than 15 health care practitioners. “Nearly all of them,” she says, “suggested that I see a psychiatrist.” A year later, rheumatologists finally diagnosed her with fibromyalgia (FM) and chronic fatigue syndrome (CFS).
Fibromyalgia often develops in seemingly healthy individuals—85 percent of them women. Oliva’s double diagnosis was not unusual, given the many shared symptoms of these related syndromes—among them overwhelming fatigue, diffuse pain, chemical sensitivity, allergies, and depression. During the past decade, FM has been one of the fastest growing disease-syndrome diagnoses. According to the American College of Rheumatology (ACR), approximately 5.6 million Americans, or nearly 2 percent of the population, now suffer from FM, making it the second-most-common rheumatologic condition after osteoarthritis. And like CFS and lupus, FM predominantly targets women of childbearing age.
In fact, FM and CFS do differ—chiefly in that CFS patients complain primarily of fatigue, whereas pain is the main symptom for FM sufferers. Currently, the medical establishment considers both conditions essentially incurable. For FM, medical practitioners most frequently prescribe antidepressants such as Prozac and Zoloft, along with aerobic exercise and cognitive behavioral therapy, which is aimed at modifying negative thoughts and encouraging healthier ways to adapt to illness.
Unsatisfied with these options, Oliva, as do up to 90 percent of FM patients, investigated complementary and alternative medicine. While setting up a home health library, she came across From Fatigued to Fantastic! by Jacob Teitelbaum, MD (Avery, 2001), who himself has successfully managed FM. Impressed, she soon traveled to Maryland to meet him at his Annapolis Research Center for Effective FMS/CFS Therapies.
Teitelbaum banned dairy, sugar, and nightshade plants such as tomatoes and potatoes (which are believed by some to cause inflammation) from Oliva’s diet. He also prescribed intravenous vitamin-mineral therapy (especially B vitamins, magnesium, and iron) as well as nicotinamide adenine dinucleotide (NADH), a coenzyme that triggers energy production and is thought to help restore proper brain chemistry. After six weeks on the new regimen, Oliva enjoyed her first solid eight hours of sleep in almost two years.
New Name, Far-Reaching History
Like CFS, FM has an all-over-the-map symptom constellation that can make initial diagnosis quite difficult. Typical complaints include: widespread pain and achiness, brain “fog,” overwhelming fatigue, disturbed sleep, bladder and digestive complaints (often irritable bowel syndrome and candida), numbness or tingling of the extremities, jaw pain (temporomandibular joint dysfunction syndrome), cognitive or memory impairment, hormonal imbalances, morning stiffness, dizziness, multiple chemical sensitivity syndrome, muscle spasms, and migraines. In 1990, the ACR established diagnostic criteria for FM: diffuse musculoskeletal pain for at least three months and the presence of at least 11 of 18 tender points, especially around the neck and shoulders, upon physical examination.
Partly because it often develops in seemingly healthy individuals—85 percent of them women—FM’s causes remain mysterious and are thought to be multiple, and perhaps include long-term physical, chemical, and psychological stressors that eventually compromise the body’s healing and immune systems. Common triggers for FM’s onset, however, are less mysterious and include trauma or injury (such as a car accident), Lyme disease, hepatitis, lupus, rheumatoid arthritis, and extreme stress.
A genetic disposition for fibromyalgia may be linked to serotonin deficiency. Although FM only earned its current name in 1976, and is thus often considered a “new” condition, physicians have been trying to describe this illness since the mid-1800s. Dubbed “fibrositis” by Sir William Gowers in a 1904 edition of the British Medical Journal, the condition has also gone by the term psychogenic rheumatism—a tip-off that the medical establishment has long suspected that this syndrome might just be a mental construct by female patients. “Women were told everything from ‘get a job’ to ‘you’re depressed’ to ‘it’s all in your head,'” says Teitelbaum. Today, says Elizabeth Unger, MD, PhD, section chief with the Centers for Disease Control and Prevention (CDC) in Atlanta, “We believe that none of it is ‘all in your head.'”
Which Do You Have?
Still a matter of some debate, though, is exactly how FM differs from CFS. “For most people, if they’re always tired, have brain fog, and can’t sleep, they either have CFS or fibromyalgia or both,” says Teitelbaum, adding that 70 percent of people with FM also meet the criteria for CFS as recognized by the CDC. But despite commonalties, says Boston-based Don L. Goldenberg, MD, author of Fibromyalgia: A Leading Expert’s Guide to Understanding and Getting Relief from the Pain That Won’t Go Away (Berkeley Publishing Group, 2002), “If a person doesn’t have widespread pain, he or she doesn’t have fibromyalgia.” Further complicating precise diagnosis, according to Teitelbaum, is the fact that FM alters organ function and hormone levels, but usually not dramatically enough to show up on blood tests—an example of what’s called subclinical dysfunction, or symptoms that play out just below the clinical radar screen.
Doctors also struggle to understand why fibromyalgia develops much more commonly in women than men. Most theories point to differences in hormones and pain pathways. “Some of the gender differences may be tied in with hormone-controlling glands, especially the hypothalamus and the pituitary gland, and the kidneys,” says Goldenberg. These sites control levels of cortisol, aldosterone, estrogen, testosterone, growth hormone, corticotropin-releasing hormone, and dehydroepiandrosterone (DHEA).
Levels of serotonin, an important neurohormone that helps us handle pain and wake up refreshed in the morning, tend to be low in both women and men with FM. But the simultaneously low levels of several hormones are thought to render women particularly susceptible to FM symptomatology. According to Goldenberg, low serotonin levels have been found in the central nervous systems of both depressed patients and patients with FM. He believes that a genetic disposition for both illnesses may be linked to serotonin deficiency—which has also been associated with CFS, irritable bowel syndrome, and migraines.
New Understanding Emerges
In recent years, researchers have been looking into the way FM sufferers experience pain in an attempt to determine whether it’s measurably different from the way people without the disorder experience pain. In 2000, University of Florida researchers seeking to uncover a neurological cause behind FM reported that they had applied painful heat stimuli to the hands of healthy patients and patients with FM. Although the pain sensations of healthy patients disappeared quickly after the heat stimulus, FM patients held on to their residual pain, or seemed to have “pain memory” for a longer-than-average period of time.
“Our findings provide evidence for an abnormal central nervous system pain mechanism in people with fibromyalgia,” says Roland Staud, MD, the study’s lead researcher. Moreover, a 1996 study by University of Alabama researchers demonstrated that FM patients have diminished blood flow to certain areas of the brain and heightened levels of substance P, a potent chemical compound that affects smooth muscle blood flow and helps transmit pain signals.
Many patients benefit from aerobic exercise; acupuncture; and low-sugar, yogurt (acidophilus)-rich diets that stave off candida and other yeast, bacteria, and parasites. These studies, along with important ongoing research, are helping build evidence for a range of biological reasons behind the persistent, debilitating pain that FM patients so vividly describe. Our body of knowledge about alternative therapies that seem to provide relief also continues to grow. Many patients benefit from aerobic exercise; acupuncture; and low-sugar, yogurt (acidophilus)-rich diets that stave off candida and other yeast, bacteria, and parasites. (For information about supportive herbs and supplements, see “The Experts Weigh In.”)
Don’t Give Up Hope
Last year, Michelle Oliva went back to work part-time as a personal trainer at a health club, where she’s also a full-time manager. These days, she takes only NADH, calcium, and a multivitamin. She also occasionally uses a prescribed sleep medication and a muscle relaxant but now feels the need for them only infrequently and plans to discontinue all medications.
Looking back at her dark days, when it seemed she couldn’t manage even basic daily tasks on her own, she says her life has turned around. “Today, I’m at 92 percent,” she says. She still gets pain and spasms, but she’s learned to manage them. “Where I used to fight my body, I now tell it, ‘OK, let’s work together.'” To anyone who suspects they might have FM, she suggests persistence in finding a sympathetic health care provider, particularly a pain-management specialist or a physiatrist, a doctor who works in physical therapy and rehabilitation. Perhaps the most important overall change, she says, has been accepting her diagnosis of FM/CFS, which in turn helped teach her critical things about self-care. “If I need downtime, I take it now,” she says. “I’ve learned a lot of patience. I’ve also learned to appreciate life to the fullest.”
James J. Gormley is a New York-based freelance writer and natural products industry consultant.