Fibromyalgia: Real Disorder With Phantom Symptoms by Carolyn Cosmos ìSome doctors donít believe it exists,î said rheumatologist Dr. Sarah Cochran of fibromyalgia, a chronic and often disabling disorder that can torment patients with diffuse pain in the muscles, ligaments, joints and tendons, causing sleep disturbances and fluctuating fatigue. Not currently curable, fibromyalgia is one of the three most common rheumatic conditions specialists such as Cochran see. And yet it can take years for patients to have their fibromyalgia identified. ìMany physicians have felt uncomfortable with this diagnosis, but the situation is changing,î Dr. Robert Bennett, a founder of the Oregon Fibromyalgia Foundation and a professor of medicine at Oregon Health and Science University, told The Washington Diplomat. Rheumatologist Dr. Robert Fox of Scripps Memorial Hospital in California agrees: ì[Physician] attitudes toward fibromyalgia as a discrete entity keep swinging like a pendulum,î he said in a recent article in Medscape Rheumatology. So where does this uncertainty and confusion come from? One difficulty is that key fibromyalgia symptomsópain and fatigueóare vague and fluctuating, and traditional tools physicians use to peg probl ems, such as X-rays or an analysis of the patientís blood, often come up empty handed. In other words, they signal that nothing is wrong. Fibromyalgia patients frequently have multiple disorders, including osteoarthritis, lupus (systemic lupus erythematosus), or chronic fatigue syndrome (CFS), making it difficult to sort symptoms out. Patient profiles and symptoms also vary, as do treatments that seem to work, and good diagnostic criteria for labeling symptoms as stemming from fibromyalgia were not available until 1990. And up until very recently, little was known about fibromyalgiaís possible causesówhat makes the body behave so badly in these particular patients. Although nobody dies of the disorder, Cochran said the human toll has been substantial. Fibromyalgia is found in about 2 percent of the population, which adds up to 5.6 million Americans. It occurs most frequently in women. According to the University of Michigan Health Center in Ann Arbor, a leader in chronic pain research, 16 percent of fibromyalgia patients in this country qualify for Social Security disability payments, one in five can only work part time, and 38 percent of sufferers in one study reported that they had considered suicide. Cochran argues that ignorance and gender bias contribute to failures in identifying fibromyalgia and treatment delays. She is critical of people who ìbelieve that ëonly women get ití or that the disorder is ëall in patientsí heads,íî she said. ìI have some male patients with it, and I have a lot of female patients with it who have been mistreated by doctors who made them feel as if they were crazy.î One such person is Susan Youngren of Oakton, Va., an environmental biologist who works for a law firm. Youngren, who is 48 and married with two children, has had symptoms suggesting fibromyalgia since her teen years but was only diagnosed with the disorder 10 years ago. The biggest treatment hurdle can be ìfinding a doctor who believes you,î she said. Physicians told her that the symptoms she was experiencing were imaginary, and she said that one even advised her to ìgo home and get pregnant.î ìYou have phantom symptoms. You may be hurting badly in the morning but by the time you get to the doctor, theyíre gone. Theyíre nebulous,î Youngren explained. ìYou begin to doubt your own perceptions.î A diagnosis can bring relief in more ways than one, she said. ìYou think, ëItís not in my head. There really is something wrong.íî How to Detect Fibromyalgia Both primary care physicians and specialists diagnose and treat fibromyalgia. Rheumatologists such as Cochran specialize in conditions involving the joints, muscles and bones, including arthritis, gout, back pain, osteoporosis and fibromyalgia. Cochran said that when she sees a patient who might have fibromyalgiaóthat is, someone who has experienced widespread pain throughout his or her body for two or three monthsólab work will rule out other problems. During a physical exam, Cochran said she uses the American College of Rheumatologyís 1990 criteria for the classification of fibromyalgia by examining areas of the patientís body called ìtrigger points.î A person with the syndrome will typically feel pain and tenderness if moderate pressure is applied to these spots, which are located on muscles in the neck, shoulders, hips and legs. Additionally, fibromyalgia patients ìalmost always have sleep problems,î Cochran noted. They have trouble falling and staying asleep and when they do drift off, they can wake up feeling tired. Some fibromyalgia patients also have bowel symptoms or irritations that feel like a bladder infection but are not. Research indicates that 60 percent of fibromyalgia patients have irritable bowel and bladder conditions. According to Bennett of the Oregon Fibromyalgia Foundation, other medical problems that can sometimes be seen in such patients include intolerance for cold temperatures, cognitive problems, dizziness and a ìrestless leg syndromeî that can feature limb tingling or numbness. Treatment Options Medication and exercise are both important treatment options, Cochran said. She recommends aerobic exercise and stretching routines such as those found in yoga. ìMedication can help patients sleep better and help the pain, [but] narcotics are not recommended. Itís better to treat more specifically for the disorder,î she said, noting that tricyclic antidepressants, which can assist with sleep, and some seizure medications may alter the way patients perceive pain. Muscle relaxants can help with pain and sleep problems, and injections of the local anesthetic lidocaine or injections of botox are sometimes given, with ìmixed results.î Alternative therapies such as meditation, massage and acupuncture may also be effective. Support groups are popular among fibromyalgia patients, ìand some patients can gain a lot from them,î Cochran said. In an effective support group, patients hear the positives as well as the negatives about the disorder and receive helpful coping tips, while a poorer support group will reinforce the idea that patients cannot get better, so experts suggest visiting several groups before joining. Patients also need to keep track of what makes their condition worse. In Youngrenís experience, getting enough rest and taking naps ìare critically important,î as is ìfinding a doctor you can talk to,î she said. If initial treatments donít work, Cochran advises patients not to give up because people and symptoms differ greatly and highly individualized treatments can be a matter of trial and error. ìWhile there are intractable cases, usually thereís some relief for everyone,î she said. Moreover, the odds for relief are improving through new research. Following an upsurge in fibromyalgia studies in the 1990s, new medications targeting the disease are now beginning to appear. The National Fibromyalgia Association announced last June study findings that tramadol hydrochloride/acetaminophen (Ultracet) can reduce pain in people with fibromyalgia. Last fall, Cypress Bioscience, a San Diego firm, told a rheumatology conference that its drug, milnacipran, now in the Food and Drug Administration (FDA) approval pipeline, could reduce fibromyalgia pain. Similarly, a seizure drug developed by Pfizer called pregabalin, also currently going through the FDA approval process, has been found useful in treating anxiety and fibromyalgia pain. Causes of Fibromyalgia Fibromyalgia experts disagree on the underlying causes of the disorder. A 2003 review by Dr. Haiko Sprott in Current Opinion in Rheumatology bluntly stated that the cause of fibromyalgia ìis unknown. Therefore, prevention, causal therapy, and rehabilitation are not possible.î However, Bennett of the Oregon Fibromyalgia Foundation counters that ìfibromyalgia articles commonly begin with the admonition that ëthe cause of fibromyalgia is not known.í This assertion is no longer justified. Impressive advances have been made in understanding the neurobiology of chronic pain.î Some studies link physical trauma, such whiplash from a car accident, to changes in the central nervous system and subsequent fibromyalgia, although definitive data do not yet exist. A January 2004 study published in the journal Pain, however, does point to a hyper central nervous system. It showed that people with whiplash and fibromyalgia have extra spinal cord excitability with oversensitive neurons. This could explain their high pain levels when there was no tissue damage present. Interestingly, a March 2000 review of the medical records of Mexican artist Frida Kahlo (1907-54) suggested that Kahlo may have suffered from the disorder following an accident th at left her with fractures and deep woundsóand she may have even depicted fibromyalgia in her paintings. The review, headed by Dr. Manuel Martinez-Lavin of the Instituto Nacional de Cardiologia Ignacio Chavez in Mexico City, noted that Kahloís work, such as the painting ìThe Broken Column,î portrays her immense emotional and physical suffering, which Martinez-Lavin speculatively attributes to post-traumatic fibromyalgia. Although trauma may be a trigger, Bennett added that numerous neurobiology studies now point to processing problems in the nervous system as the cause behind fibromyalgia. Fibromyalgia patients donít respond to the sensations of heat and cold as others do, and they seem to have nerve endings that are abnormally sensitive to pain. Pain researchers at the University of Michigan are using brain scans to study fibromyalgia, and in 2002, they created concrete ìbrain snapshotsî of fibromyalgia pain. In 2003, the Michigan researchers used these scans to demonstrate that depression is not likely to cause fibromyalgia as many have claimed. They also point to the effects of female hormones on pain response: When estrogen levels are high, they found that the brainís painkiller endorphins kick in. Low levels of estrogen led to high levels of pain. Is there a way to tie all of these findings together? Some researchers believe that the disorder is ultimately caused by excessive levels of a pain-processing neurotransmitter called ìsubstance P,î a multitasking chemical in the skin that is found in high levels in the cerebrospinal fluid of fibromyalgia patients. It is also involved in inflammation and emotion regulation. When there is more substance P, there is more of a perception of pain, and reducing levels of this neurotransmitter could theoretically reduce or eliminate fibromyalgia symptoms, explained Thomas Park, associate professor of biological sciences at the University of Illinois at Chicago. However, the problem, he added, is that substance P performs many tasks in the body, so reducing it could create havoc on other parts of the body. Parkís recently published research points to a possible way out. Park and his team have discovered that a strange mammal, the East African naked mole rat, has evolved to be able to survive just fine without substance P in its skin, and mole rats do not normally experience skin pain. Although clinical applications of this discovery are a long way off, Park said that if we could discover how mole rats manage to eliminate substance P and the pain response without wrecking the rest of the bodyís machinery, we might develop a substance P-based treatment for fibromyalgiaóor even a cure. This upsurge in research and the increased use of the 1990 diagnostic criteria are changing the fibromyalgia landscape, said Bennett. During his travels, he has found that the ìtrigger-pointî diagnostic criteria for fibromyalgia are becoming globally recognized. The reported fibromyalgia prevalence is now between 2 percent and 5 percent in most nations, he said, with a female-to-male ratio of 9 to 1 worldwide. Carolyn Cosmos is a contributing writer for The Washington Diplomat.