Originally published in Body Sense magazine, Autumn/ Winter 2003.
Copyright 2003. Associated Bodywork and Massage Professionals. All rights reserved.

Living with fibromyalgia requires a whole new approach to “living.” Those stricken with the unrelenting pain and fatigue that are hallmarks of this affliction cannot always count on doctors to supply a cure or even an effective treatment. In fact, they are sometimes ignored or unheard by the medical community. Sufferers are, instead, challenged to take control over their condition. The judicious use of medicine, seeking out and researching complementary services and remedies, and an intelligent blend of listening to the body without becoming self-absorbed can both liberate and empower.

Find Your Approach

We don’t tend to hold rigid views about what works and what doesn’t.” Those words from Carol Burckhardt, Ph.D., a nurse and researcher at Oregon Health Sciences University, reflect an enlightened attitude among scientists specializing in fibromyalgia. Burckhardt advises patients to “take a positive approach, take a holistic approach and take an inquiring approach to any and all treatments you might use.”

Judy Hayes credits one doctor for helping her find the way back from pain. Hayes, 59, describes her fibromyalgia like “having the flu all the time.” Because symptoms — including tight muscles, body aches, severe fatigue, headache, nausea and difficulty sleeping — are so commonplace, doctors may not know where to start. What’s more, most fibromyalgia occurs in women, whose medical complaints, are not always taken seriously. Hayes was no exception, when 19 years ago doctors made it clear she was just another “crazy female.” After shuttling from doctor to doctor, she finally found one who paid attention. Stephen Balch, M.D. listened to her description, read her list of symptoms and immediately became suspicious it was fibromyalgia. When he correctly predicted the location of painful trigger points, Hayes grew confident a diagnosis was finally at hand.

Balch, who specializes in chronic conditions, reminds all his patients of their respective roles in what he calls PDSM, or physician-directed self-management. Under PDSM, the doctor provides education and sometimes offers medications to deal with specific symptoms. Yet, it is up to the patient to deal with the illness day-in and day-out. It is, he believes, the best formula for success with chronic conditions like fibromyalgia.

Hayes’ commitment to the PDSM philosophy begins by being aware of how she’s doing throughout the day. She takes a muscle relaxant and mild pain medication most evenings, but avoids relying on strong drugs to remain functional. She prefers to manage her condition with a combination of nutritious foods, casual exercise and pacing herself to avoid stress and conflict. This is her way of reclaiming the life she had before the sudden onset of fibromyalgia after an auto accident nearly two decades earlier. Tailoring medical advice requires a high level of trust from both physician and patient. As Balch puts it, “Patients know a lot more about their bodies than doctors do, and doctors know more about medicine than patients do. By sharing their knowledge, the wisest decisions can be made and the best outcomes achieved.”

Controlling the Illness

Hayes is delighted to find that taking Balch’s broader view helps her maintain the upper hand over her disorder. “It used to be that the illness had me,” she explains, “but now I control the illness.”

Hayes finds great relief from physical therapy and massage, stressing “it’s important the therapist knows what he or she is doing.” The worst fear for people with fibromyalgia is a sudden flare-up, and Hayes said bodywork applied improperly for the condition “can set it off.” Implemented appropriately, massage can make the disorder more tolerable.

Massage soothes aches, relieves muscle tension and provides a comforting respite from distress. In a scientific study, The Touch Research Institute at the University of Miami School of Medicine found “those who got 30 minutes of massage two times a week for five weeks had less anxiety and depression and lower levels of stress hormones.” Other benefits shown in the study include less pain and stiffness, less fatigue and less trouble sleeping.

In her experience with patients at Oregon Health Sciences University, researcher Burckhardt is impressed by how effective massage can be. “If the massage therapist listens to the patient and the patient listens to her body it can be a very good match,” she says. Burckhardt favors “easy-does-it” massage techniques. She cites the work of Milton Trager, finding his philosophy of encouraging gentle, free and rocking movement to be especially suitable in managing clients with fibromyalgia. Trager avoids painful areas, Burckhardt explains, just as the sports massage therapist seeks them out. Clearly with fibromyalgia, the former approach is essential, and the latter, detrimental.

Hayes says her therapist helps her gently explore a fuller range of motion. She finds that emphasis to be especially helpful in controlling painful hamstring flare-ups, which can otherwise slow her down considerably.

Detective Work

Fibromyalgia is not a disease in the classic sense, but rather a syndrome, or collection of symptoms. Diagnosis involves detective work, especially since the usual medical tests — X-rays and blood work — show no measurable signs of disease. And although joints may be extremely sore, there is no obvious inflammation. While baffled as to a cause or mechanism, experts recognize fibromyalgia as a neurosomatic disorder (affecting both the nervous system and body). At least part of the problem, doctors believe, centers on how the brain accepts and acts on pain messages. The most consistent finding is a pattern of tenderness in at least 11 of 18 specific points on the body, extending from the neck, shoulders and arms, to the hips, thighs and knee areas. Presence of widespread pain for at least three months generally clinches the diagnosis. Fibromyalgia is neither a muscular-skeletal disorder, nor a psychiatric condition. Minimizing disability, however, requires persistence and a lot of mental discipline, qualities Hayes relies on every day of her life.

Maintaining Balance

Hayes describes herself as “a fighter,” but she is also a realist. Maintaining balance in her life, she has learned to avoid the peaks and valleys of over-exuberance on the good days, and frank misery on the bad. “It takes every bit of energy I have to get out of bed,” Hayes says, in reference to the “good” days. The challenge of getting up is heightened by feelings of fatigue from perpetually fretful nights and the pain of movement after a night of relative inactivity. Reminding herself that morning is the toughest part of the day, she forces herself to start with a calming cup of hot tea.

Moderation has become Hayes’ byword as she builds a routine around both a schedule and personal limitations. “I don’t want to be known as a person who is sick,” she says, while in the same breath points out, “you can’t do what you used to do.” After two decades of living with fibromyalgia, Hayes likes to remind herself, “I’m a human being, not a human doing.”