What if you woke up every morning to unrelenting pain and severe fatigue? If you had seen a small army of doctors and none seemed able to help? And what if physicians and even friends and family started saying, “It’s all in your head”?
Unfortunately, this is a reality for millions of women. Entangled in a quagmire of misdiagnosis that can include Lyme disease, lupus, rheumatoid arthritis, depression and even multiple sclerosis, many women go for years from doctor to doctor unable to find a name for their pain, let alone an effective treatment. Making matters worse, when other diagnoses are eventually ruled out, assumptions are sometimes made that these patients are hypochondriacs or that their illness is purely psychological.
In many cases, the name for this mystery disease is fibromyalgia. While there are emerging theories, the disease’s cause is unknown, as is the reason it mostly affects women. Adding to the confusion, a segment of the medical community has been reluctant to accept it as a real and prevalent issue. But a rapidly increasing number of medical professionals are zeroing in on the proper diagnosis and treatment. And the expanding knowledge and increased attention offer renewed hope for those suffering from this frequently debilitating disease.
Getting the right diagnosis
More than 6 million Americans are afflicted with fibromyalgia, and 90 percent of them are female. The prevalence increases with age, notes Julie Mitchell, associate professor of medicine at the Medical College of Wisconsin and a general internist with Froedtert Hospital. It ranges from 2 percent at age 20 to as high as 8 percent at age 70, with most people affected between ages 30 and 55.
Despite the high number of cases, the evasive nature of fibromyalgia has drastically slowed the medical community’s understanding, acceptance and effective response to the disease. “Fibromyalgia is by far one of the trickiest diagnoses to make,” says Mitchell. “In part because these symptoms [chronic pain and fatigue] frequently overlap with many different things.”
In 1990, the American College of Rheumatology (ACR) legitimized the diagnosis and formalized the diagnostic parameters. And in June 2007, the drug Lyrica became the first FDA-approved medication for specifically treating the disease.
But even with this progress, many women find it difficult to get the help they need. Lynn M. Marquardt, a nurse practitioner at Community Memorial Women’s Center who specializes in fibromyalgia, notes that it takes the average woman five years to be properly diagnosed and treated. She believes the crucial first step is finding a practitioner with whom you feel comfortable. “Fibromyalgia is a diagnosis of exclusion,” she says. “There’s no X-ray or blood test that you can do to help you make the diagnosis, so it’s extremely important to have a good rapport with the patient and really listen to what they’re saying.”
After taking a comprehensive history and ruling out other diagnoses, Marquardt follows the ACR’s guidelines. They define fibromyalgia as including widespread pain (above and below the waist, on both sides of the body, and including pain in the cervical, thoracic or lumbar vertebrae); chronic fatigue for at least three months; and tenderness in at least 11 of 18 specific points.
Investigating new theories
No one fully understands fibromyalgia’s cause, nor is there a widely accepted cure. But as patterns emerge, so do theories.
According to Marquardt, one possibility is abnormal levels of chemicals that transmit and amplify pain, which Lyrica helps control. She also notes that approximately a third of patients seem to develop the syndrome after an infection, like mononucleosis. And according to Mitchell, at least half the cases of fibromyalgia can be traced back to a physical or emotional trauma.
Most practitioners also believe fibromyalgia has correlations with sleep deprivation, potentially from an interruption of the REM stage, which is necessary for regeneration and regulation of muscle tissue and the immune and endocrine systems.
Christopher Coe, a professor of psychology at the University of Wisconsin-Madison, executed a six-year study of women with fibromyalgia, which originally focused on the common theory that fibromyalgia is caused by an inflammation of nerves and the immune system. However, he found the opposite to be true: In most cases, the immune system was understimulated and the cells were fatigued.
He and his colleagues also isolated three distinct subgroups. The first linked fibromyalgia to a viral infection or acute physical injury; the second to a history of childhood trauma – often associated with neglect or maltreatment; and the third to precursors of auto-immune disease. Coe believes the latter group may ultimately prove to be either a subdiagnosis of fibromyalgia or perhaps a new disease all together.
Two other theories are also meriting interest in the field. Marquardt has noted a significant vitamin D deficiency in many of the women she treats, and she’s achieved promising results with supplements.
And while not widely accepted, some believe that yeast, specifically Candida, is to blame. Dr. Bruce Semon, a Glendale-based board-certified psychiatrist with a doctorate in nutrition, believes controlling Candida in the stomach and intestines is the key to controlling – possibly curing – fibromyalgia.
His theory is based on the fact that Candida is capable of masquerading as our own tissue. In the process of trying to eradicate the yeast, our immune system begins to attack our own cells.
Semon purports that a specialized diet, along with the anti-yeast medication Nystatin, is not only one of the safest treatments, it’s also among the most effective. “I’ve had patients come in with either fibromyalgia symptoms or MS symptoms and they’re gone within a month,” he notes. “This is not hard to do if people really follow the diet.”
Understanding the psychological component
Because many women have been told that psychological issues are responsible for their pain and fatigue, there’s been an understandable backlash against the potential role psychology plays in fibromyalgia. Yet many practitioners believe that this is a key component to explore for optimum treatment and control of the disease.
“For a long time, [fibromyalgia] was relegated to the field of psychiatry because it is more common in people who are anxious and depressed,” explains Coe. “Or to say it the other way, if you live with chronic pain and no one can tell you why, you might be more inclined to become anxious and depressed… The fact that there’s a psychological or cognitive component of fibromyalgia in no way lessens the reality of it.”
Menomonee Falls resident Gail Todd was diagnosed with fibromyalgia in 1986. Though her disease has forced her to retire from nursing, she is a registered nurse who worked in the neonatal ICU for many years. “Fibromyalgia is very stressful,” she says. “You end up feeling like you’re in a constant state of turmoil: ‘How am I going to feel today? How am I going to accomplish what I need to get done?’ And then, frequently you miss out on the fun things because you don’t have the energy.”
The vicious cycle that emerges between the physical and emotional aspects of fibromyalgia often leads to depression, which in turn worsens the physical symptoms. “The combination of pain and fatigue can make you feel very depressed,” says Todd, who’s been on antidepressants since she was diagnosed.
Plus, explains Marquardt, chronic stress leads to a depletion of important neurochemicals, including serotonin, which is a physiological trigger for depression. That’s why most practitioners believe that antidepressant therapy is critical for effective treatment. Antidepressants can also help moderate sleep and relieve pain.
And because many practitioners note a correlation between emotional trauma and fibromyalgia, antidepressants and counseling may be essential to controlling the disease’s physical aspects for some women. “If you have unresolved emotional issues due to some traumatic or stressful life event, it is possible that it will become manifest; it will present itself physically,” says Coe.
Exploring what works
Part of Coe’s study focused on mindfulness meditation, which teaches people to be present in the moment and acknowledge the good along with the bad. At six, 12 and 18 months out, the women who had taken an eight-week class showed significant improvements in sleep and disability.
Interestingly, their pain had not necessarily lessened, but their sense of suffering from it had. Coe explains that while we associate pain with touch, it’s actually processed in the part of the brain that handles emotion. “Pain can be very much influenced and colored by our perception of it and our tolerance to it,” he notes. “So some people suffer much more and are more disabled by fibromyalgia than others. That’s not to say it’s a mental illness, but it has to do with how you think about pain.”
While emotional well-being is a key component of treatment, pain and fatigue must also be controlled. Many medications have proven useful, as have topical analgesics, trigger-point injections and physical therapy. “You just have to have patience until you find something that works for you, and you have to find a practitioner who can help you,” says Todd. “Plus, you need to attack the problem on multiple fronts.”
Fibromyalgia sufferers must also focus on lifestyle, including diet, exercise and sleep, says Marquardt. She recommends a diet high in omega-3 fatty acids and other foods that decrease inflammation, while avoiding processed foods and potential allergens, mainly wheat, corn and dairy.
While medical science works toward a better understanding of fibromyalgia and ultimately a cure, women now have great odds of overcoming the debilitating effects of the disease. Marquardt notes that at least 90 percent of sufferers can achieve a very good quality of life.
Todd has been taking vitamin D supplements and receiving trigger-point injections, as well as controlling diet and exercise under Marquardt’s care. “I have some of my hope back again,” Todd says. “I really feel like I’m getting my fibromyalgia under control – it’s at the best it’s ever been.”
Stefanie Ramp is a frequent contributor to Milwaukee Magazine.
Doing “wheelies” into the ER.
Shoes with wheels, such as Heelys and Street Gliders, are leading to new injuries for kids. One orthopedic practice in Dublin, Ireland, reported in Pediatricsthat 8 percent of all its pediatric office visits in the summer of 2006 were related to these injuries. Broken arms, wrists, elbows and hands were most common, usually from falling backward. More than one-third required hospitalization. Doctors suggest wearing protective equipment and practicing carefully.
Even fake acupuncture helps back pain.
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Micro-dose estrogen reduces hot flashes.
Postmenopausal women with hot flashes may want to try a skin patch with the lowest-available dose of estrogen. A study of 425 postmenopausal women with at least seven significant hot flashes per day was reported in Obstetrics and Gynecology.About 41 percent of subjects responded to the daily dosage of 0.014 mg of 17-beta-estradiol. Hot flashes were reduced, on average, by 50 percent after two weeks and 95 percent after 12 weeks. The dosage increases bone mineral density with minimal side effects and less risk than with higher dosages.
Blood pressure drug fights MD.
Patients with Duchenne muscular dystrophy rarely live past age 30 because of heart disease, but taking perindopril may improve survival. Children with muscular dystrophy who took 2 to 4 mg per day of perindopril (Aceon) lived longer, notes a study in the American Heart Journal. For best results, the drug – an ACE inhibitor typically used to treat high blood pressure – should be started prior to adolescence and continued for years.
Don’t burst your baby bubble.
Deliberately rupturing the amniotic membranes during labor does not increase contractions or speed delivery, notes a report in The Cochrane Library online. The review of 14 studies representing 4,893 women also found that this widely used procedure (amniotomy) didn’t improve infant outcomes. Calling for additional research, the authors said, “we do not recommend that amniotomy be introduced routinely as part of standard labor management and care.”
– Scott R. Weinberger
