Enigmatic disorder calls for an integrated approach
By Shannon Burgert
Increasing evidence points to a sort of misprocessing in the central nervous system. Normal sensory messages are essentially amplified and processed by the brain as pain.
When he was married, Boulder resident Dave Harrison sometimes couldn’t sleep in the same room as his wife—his skin is so sensitive that the draft from a fan or open window puts him in agony. He sports suspenders because neither belts nor elastic waistbands are tolerable. Harrison, 79, is one of more than 5 million adults nationwide who suffer from fibromyalgia.
Fibromyalgia is characterized by chronic widespread musculoskeletal pain, often accompanied by fatigue, insomnia, anxiety, mood disorders and mental fog—and plenty of additional side effects, like Harrison’s sensitivity to touch. The disorder has a higher incidence in women than men, a ratio as high as 9 to 1.
Fibromyalgia is challenging to diagnose. It can be difficult to find a pattern in symptoms, symptoms overlap with other chronic conditions, and it can’t be confirmed or dismissed through a simple lab test. “It’s a diagnosis of exclusion,” says Megan Moon, D.C., BSN-RN, a chiropractor and director of Colorado Fibromyalgia Center in Lafayette.
But researchers may have made a breakthrough. Scientists at CU Boulder’s Cognitive and Affective Control Laboratory have recently identified, through brain scans, neurological patterns that correlate with the hypersensitivity to pain that fibromyalgia patients suffer. Marina López-Solà, Ph.D., lead author on the study (now an assistant professor at Cincinnati Children’s Hospital Medical Center), says that the brain signatures
may not only help with clinical diagnoses—at this point with 93-percent accuracy—but may also illuminate variances in brain activity to help physicians understand what’s driving the pain for a particular patient, enabling them to design individualized treatment. The MRI scans, still in the early phases of a validation process, probably won’t be available for clinical use for many years.
Though the tool is not yet at her fingertips, Moon is hopeful about the possibilities the brain signatures may offer. “Anything that can give us a quicker diagnosis, a more specific diagnosis, is extremely exciting,” she says, adding that the tool might make it possible to categorize patients into subtypes.
Stressors as Triggers
The underlying nature of fibromyalgia has become clearer in recent years. For a time it was believed to be an autoimmune disorder, but that line of thinking is waning; there doesn’t seem to be the sort of cellular confusion—cells attacking healthy cells—that characterizes autoimmune syndromes. Increasing evidence points to a sort of mismanagement of pain processing in the central nervous system. Normal sensory messages—not only pressure, but even stimuli like light, sound, temperature and odor—are essentially amplified and processed by the brain as pain.
It’s almost as if people get stuck in the symptoms of a lower-grade stress response, says Moon. The body functions as if there might always be danger right around the corner. Patients may startle more easily than a healthy individual, or experience pain or sleep disturbances more often. They frequently experience a higher-than-normal state of anxiety, their muscles tightening as a consequence.
What sets fibromyalgia in motion in a person’s body remains unclear, but López-Solà says researchers believe there is a genetic component. There also seems to be a correlation with physical or psychological trauma—a car accident or even recurrent viral infections may trigger the disorder. “Stressful events may imprint the central nervous system, increasing vulnerabity to develop the disorder later on,” she says.
Moon, who has worked with upward of a thousand fibromyalgia patients, has noticed a pattern in patients who don’t have any clear traumatic stressor in their history. Instead, many years of conscientious, driven work seem to build up a cumulative stress that leads to the same effect.
Dealing with Pain & ‘Fibro Fog’
It was within a couple years after a bad break to her leg that Broomfield resident Heather Hait, 38, began experiencing significant pain in her arms and legs, an ache she likens to growing pains. She also feels excruciating and lingering pain in the fleshier parts of her body, like her upper arms and hips, when she is poked in those areas.
Hait’s pain was initially diagnosed as a manifestation of depression. However, after antidepressants made no improvement, a different doctor diagnosed Hait with fibromyalgia using “tender points,” applying firm pressure to 18 specific areas on the body, looking for sensitivity. (Many physicians still use tender points, but newer criteria developed by the American College of Rheumatology in 2010 instead focus on widespread pain in all four quadrants of the body lasting at least 3 months; the presence of additional symptoms; and the elimination of other conditions.)
Hait tried the fibromyalgia medication Cymbalta. While it didn’t help the pain she feels when poked, it did address the more widespread pain. However, she abandoned Cymbalta after 6 months, as it increased her hunger so much that she gained 30 pounds.
“I’ve learned to deal with the pain,” she says. (On bad days she does turn to painkillers.) “What’s hardest is the low energy levels.” She also struggles with “fibro fog,” a cognitive cloudiness that challenges concentration and memory.
Hait has found the most success with healthy eating. Carbs in general, but particularly sugar and processed carbs, can wreak havoc on her body. “If I have sugar midday, often my legs are killing me by nighttime,” she says.
In addition to Cymbalta, Lyrica and Savella, all FDA-approved specifically for fibromyalgia, patients commonly use muscle relaxants. Moon says that often fibromyalgia patients take multiple medications to address the variety of symptoms, such as pain, anxiety and insomnia.
Bodywork can make a significant dent by relaxing tight muscles, says Moon. Dry needling, massage, acupuncture and chiropractic work all may alleviate symptoms. Moon advocates for an integrated approach—multiple specialties to address the symptoms in different areas of the body.
Hope for Sufferers
López-Solà notes that mindfulness and cognitive behavioral therapy can be quite successful in managing pain. “A person can start to let go and not feel trapped in their response to that sensation,” she explains. She is also a strong proponent of education to help patients understand the origin of the pain. With fibromyalgia, pain does not mean tissue damage, and the fear of causing pain can become worse than the pain itself, immobilizing patients to the point that they may start avoiding many normal activities.
But inactivity over time intensifies symptoms. Routine, low-impact aerobic exercise and resistance training are recommended, but it’s essential to build up gradually. Hait vividly recalls one overzealous water-aerobics session that left her in terrible pain for two days.
Harrison says that while everyone should live a healthy lifestyle, with fibromyalgia he can’t afford to cut corners. “The approach that works for me is to control the circumstances that are controllable—sleep, diet and exercise—so that I can handle circumstances that aren’t controllable.” That tenet gives him reserves so that he can do the things that are most important, like being an active granddad.
As for Hait, she’s still looking for more effective treatment options, particularly those that may address her low energy levels and mental fog. She’s hopeful that in the not-too-distant future, neurological imaging will offer insight.
Moon is hopeful that the scans could also eliminate the stigma associated with fibromyalgia, as well as the question of whether someone is accurately diagnosed, or whether it’s a legitimate disorder at all. “It will give validation to these people who are suffering,” she says.