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Hurting All Over: Fibromyalgia

11/13/00 (p.78)

With so many people in so much pain,
how could fibromyalgia not be a disease?

In 1990, the term "fibromyalgia"
formally entered the medical lexicon. It designated a condition of persistent
muscle pain throughout the body, pain that is often accompanied by severe
fatigue, insomnia, diarrhea and abdominal bloating, bladder irritation, and
headache. Now, ten years later, nearly six million Americans are said to be
suffering from fibromyalgia-more than four times as
many as will develop cancer this year, and six times as many as are living with
H.I.V. Ninety per cent of the afflicted are women, and the majority are
Caucasian. Many cases follow a traumatic event, such as surgery, but others
have no apparent cause.

Because of the vast number of people affected and the degree of debility it
can cause, fibromyalgia has recently become a matter
of national concern: it is featured with increasing regularity in newspapers
and magazines and on television, and it is the focus of hundreds of Internet
sites. Specialized clinics have been established, and pharmaceutical companies,
realizing that the illness is chronic and therefore potentially lucrative, have
been marketing to the afflicted. Support and advocacy organizations have
lobbied Congress so effectively that the National Institutes of Health is now funnelling millions of dollars into fibromyalgia
research. And yet virtually every aspect of this condition, down to its very
name, is contested in the medical community. The debate over diagnosis and
treatment has become so heated that it has polarized medical specialists;
choosing a doctor has become tantamount to adopting an ideological position.

One of the first doctors to attempt to define the cluster of symptoms now
known as fibromyalgia was Frederick Wolfe, the
director of the Arthritis Research Center Foundation, in Wichita, Kansas,
who became interested in the condition in the nineteen-seventies. Like many
other rheumatologists, he was seeing an increasing number of patients who
complained of diffuse muscle pain but who, upon
physical examination, showed no evidence of inflammation; subsequent laboratory
tests, X-rays, and tissue biopsies failed to show any muscle pathology. He
found nothing in the clinical textbooks to explain these mysterious muscle
complaints, so he decided to assess as many such patients as he could, and to
enter the clinical data into his computer.

In 1987, Dr. Wolfe brought together twenty rheumatologists from across the United States and Canada to codify the unknown
disorder. Its name is derived from the Greek "algia,"
meaning pain, "myo," indicating muscle, and
the Latin "fibro," indicating the connective tissue of tendons and
ligaments. Their diagnostic criteria were as follows: when a doctor firmly
pressed on eighteen designated points where muscle, tendon, and ligament attach
to bone, a patient who felt pain at eleven or more of those points had fibromyalgia. The American College
of Rheumatology endorsed these criteria, and the fibromyalgia
syndrome became an officially recognized disorder. At the time, Wolfe and his
colleagues saw this as a great step forward: the criteria would not only enable
doctors to make a diagnosis but also provide researchers with a defined
population of patients, so that they could better search for a cause and
methodically assess the risks and benefits of specific treatments.

Dr. Don Goldenberg, a professor of medicine at Tufts University School of
Medicine, who helped Dr. Wolfe develop the criteria for fibromyalgia,
has been the director of the Arthritis/Fibromyalgia
Center at Newton-Wellesley Hospital since 1988, and he is considered one of the
most passionate advocates for those who suffer from the condition. His
commitment is rooted in personal experience. In the late seventies, his wife,
Patty-"the most upbeat, outgoing person I know," Goldenberg
says-became suddenly and inexplicably afflicted with pain, insomnia, and
profound exhaustion. She was ultimately diagnosed with fibromyalgia.

Last spring, I attended an educational meeting that Dr. Goldenberg had
organized for fibromyalgia patients in the Westin
Hotel, just outside Boston.
The meeting was free, its costs underwritten by pharmaceutical companies, which
had set up marketing booths in the entryway. Nearly all the participants were
white women between the ages of twenty and sixty. Some walked with canes that
had a four-point base, others wore braces on their wrists or ankles, and many
limped. The cavernous hotel ballroom, which seats more than seven hundred and
fifty people, was filled beyond capacity.

Goldenberg's opening slides addressed the concerns that he knew were on the
minds of every patient in the audience: "What Is Fibromyalgia?
A Medical Illness? A Syndrome?
A Psychiatric Illness? Is It All in the Head?"
"It's not all in the head," he declared. "Only a third of
patients manifest major depression, anxiety, or panic. It becomes a
chicken-and-egg problem. People are anxious and depressed from their pain and
their suffering. Labelling fibromyalgia
a psychiatric illness is stigmatizing." How could there be no disease, he
asked, when those afflicted are in such pain? He cited cases of fibromyalgia that have followed viral infections, like the
flu, physical injuries, or emotional traumas, and then likened the pain to that
of a phantom limb: "Whatever trauma initially triggered fibromyalgia is long gone. But the pain persists."

Goldenberg criticized physicians who were skeptical of the condition and who
dismissed it-along with chronic fatigue and irritable bowel-as a
"wastebasket" syndrome, meaning it does not fit into established
categories of physical disease. The message implicit in such a term is that the
patient's symptoms are clinically insignificant, a hodgepodge of complaints
without physical explanation. In this forum, however, such patients would not
be dismissed. "You are not crazy," he assured his listeners.

Goldenberg then introduced Dr. Robert Bennett. Bennett is a rheumatologist
who was a member of Wolfe's criteria team and is now the chairman of the
division of arthritis and rheumatic diseases at the Oregon
Health Sciences
University, in Portland. He told the audience that Alfred
Nobel, the inventor of dynamite and the founder of the prizes that bear his
name, suffered from fibromyalgia and irritable-bowel
syndrome. A slide showed a quotation from Nobel's writings: "I am more
seriously ill than my doctors think." Bennett looked at the audience.
"Statements like that make it sound like you and Nobel are all
hypochondriacs." There was nervous laughter in the audience.

New data, Bennett said, proved otherwise. Using a series of graphs,
diagrams, and images of brain scans to illustrate his argument, Bennett said
that people with fibromyalgia have a number of neurochemical and circulatory abnormalities that make them
unusually sensitive to pain. "I believe the answer is that you suffer from
a disorder of sensory processing, so there is amplification of sensory nerve
impulses-increased input from muscles, bowel, bladder, and the organs of taste
and smell." The complexity of Bennett's data did not blunt the eager
attentiveness of the audience: here at last was a plausible explanation for a
maddeningly elusive condition.

Not long after the conference, I visited Dr. Goldenberg in his office at Newton-Wellesley Hospital. About fifteen patients a week
are referred to him for evaluation of symptoms that indicate fibromyalgia; one of the patients I met was a woman I will
call Paula Cortez, a thirty-four-year-old of Portuguese heritage from a mill
town in southern Massachusetts.
A large woman with auburn hair and brown eyes, Mrs. Cortez offered a tentative
smile as Dr. Goldenberg greeted her in the waiting room. She let go of her
five-year-old son's hand and walked slowly into the office, leaning on a
four-point cane.

Dr. Goldenberg listened intently as Mrs. Cortez recounted her story. In
1995, when she was five months pregnant, she developed a pain in her hips so
intense that she was unable to walk. The pain did not abate after her son was
born; in fact, it spread "everywhere in my body, from the neck down."
She saw many doctors and had numerous blood tests and three M.R.I. scans. All
these evaluations were negative for any bone, joint, or muscle disease. The
pain was worst in her back. "I feel like I have two knives stuck in
there," she explained. This makes it impossible for her to sleep for more
than an hour or two at a time. Such "non-restorative" sleep is
characteristic of fibromyalgia, Dr. Goldenberg said.

Mrs. Cortez thought that perhaps the baby had depleted her calcium levels,
and so she began drinking large amounts of calcium-enriched orange juice and
took calcium supplements, but without effect. She takes Motrin and Tylenol
strengthened with codeine for the pain, and sleeping pills for her insomnia.
She has also been given different psychiatric medications by her primary-care
physician, and recently began taking Prozac. "Now I have a big pharmacy in
my house," she said. Nothing, however, works particularly well.

"Sometimes when I go to the doctor, he doesn't spend more than five
minutes with me," Mrs. Cortez said. Her experience with a chiropractor was
similarly unhelpful. "He moved me like this," she said, making a
twisting maneuver with her hands. "It didn't get me better." Dr.
Goldenberg asked if she thought she was depressed. "Of course I am
depressed-my house is a mess, my life is a mess. I don't work. I don't have any
money. I have no social life."

When I asked about her husband, she looked away, and then explained that
when she got married, in 1991, her husband was not a legal immigrant and didn't
have a green card, so he couldn't work: "We were fighting all the time. I
felt trapped." Mrs. Cortez said she had begun to put on weight, and over
the past eight years had gained some eighty pounds. Her husband was
unsympathetic to her condition. "It's hard when you have tests and the
tests don't show anything," she said. They are now separated.

We moved to the examining room. Mrs. Cortez exhibited no evidence of
arthritis, and seemed to have full range of motion in her fingers, wrists,
elbows, and neck, and even in her painful hips. Dr. Goldenberg then explained
to Mrs. Cortez that he was going to apply pressure to different parts of her
body. "If you feel pain, not just pressure, when I press, then tell me.
Say the word out loud-'pain.'" Dr. Goldenberg began at her wrists,
exerting with trained fingers nine pounds of pressure, in accordance with the
criteria of the American
College of Rheumatology.

"Oh-pain. Pain. Pain." At nearly every point, Mrs. Cortez winced.

"Mrs. Cortez, you have fibromyalgia,"
Dr. Goldenberg said. An expression of relief crossed her face.

Language is as vital to the physician's art as the stethoscope or the
scalpel. A doctor begins by examining the words of his patient to determine
their clinical significance. He then translates the words into medical
language, describing how the condition came to be, what it means, and how it
may evolve. Of all the words a doctor uses, the name he gives the illness has
the greatest weight. It forms the foundation of all subsequent discussion, not
only between doctor and patient but also between doctor and doctor and between
patient and patient. With a name, the patient can construct an explanation of
his illness not only for others but for himself. The name of the illness
becomes part of the identity of the sufferer-"P.W.A." (person with AIDS), or "cancer survivor"-and
indicates the status the person has gained from his experience; it is shorthand
for his odyssey, akin to "veteran of foreign wars" or, in Muslim
lands, "hajji," for one who has made the hajj. The name can also
provide an instant community.

At the end of the afternoon, I accompanied Dr. Goldenberg to a small
conference room adjoining his office, where Mrs. Cortez and several other
patients he had just evaluated were assembled. "There are no known cures
for fibromyalgia, although charlatans promise
them," Dr. Goldenberg said. "And while it is usually a chronic
condition, there is hope of alleviating the symptoms. Low doses of tricyclic antidepressants, like Elavil,
can be beneficial. So can a gradual program of exercise. Pain medicines like Ultram may afford relief. We work as a multidisciplinary
team here with a psychiatrist down the hall and a physiatrist." In
essence, Dr. Goldenberg's care consisted of judicious doses of psychotropic
medicines and analgesics, a graduated exercise program, and-perhaps most
significant-the promise that the patient's suffering would be taken seriously.

I left Dr. Goldenberg's office wondering how Mrs. Cortez's experience might
compare with that of someone of a different socioeconomic and educational
background. I spoke with a close friend of some thirty years, a
fifty-one-year-old woman I'll call Liz Albright. Liz, who teaches at an élite New England
college, has received a diagnosis of fibromyalgia
with associated chronic-fatigue and irritable-bowel syndromes. Her troubles
began in 1994, after she underwent surgery for sinus infections. She never
recovered her sense of well-being, and suffered from insomnia, fatigue,
headaches, and deep muscle aches in her arms and chest. "My internist told
me that it was all tension, that I'm middle-aged, and reacting to the stress of
raising two kids, five and eight," she said. At that time, she had other
stresses as well. She had recently been divorced, and she and her ex-husband
closed a business they had managed together.

Liz had had episodes of depression in the past, but this felt very
different. One specialist she consulted thought that her pituitary gland might
have been nicked during the sinus surgery, but extensive endocrinologic
testing showed otherwise. A gastroenterologist suggested that she might have
celiac disease, or sprue-a rare allergic reaction to
the gluten in wheat, rye, and barley-and Liz underwent endoscopies of her
stomach, small bowel, and colon, and multiple analyses of stool to try to
confirm the diagnosis. "When all the tests came back negative for sprue, he completely lost interest in me," she said.
She came to Boston
and saw other specialists, none of whom could do more than offer the diagnosis
of fibromyalgia and chronic-fatigue syndrome.

Liz's experience of being shunted from doctor to doctor is typical. In the era
of managed care, doctors have neither the time nor the incentive to listen to a
seemingly endless list of inexplicable symptoms. Fibromyalgia
patients often set off a game of clinical hot potato, with each doctor eager to
pass the patient on to a colleague as quickly as possible. One doctor referred
to these patients as "the bane of the medical profession."

Unable to get help from physicians, Liz turned in desperation to alternative
healers. A Vietnamese monk performed acupuncture, which was of no apparent
benefit. A chiropractor told her that a car accident she had had at the age of
sixteen had "messed up" her neck: "Crack, crack, he moved me
around, took several hundred dollars, and tried to sell me pillows." An
osteopath told her that she would be on painkillers for the rest of her life.

Liz now goes to a local internist. "The first thing I said to him was
'You need to believe I am really sick, not just complaining.'" For her
fatigue, she was given Ritalin, and for her insomnia she was given Ambien. "I am probably addicted," she said,
"but the doctor keeps giving them because he has no answers."
Recently, she began taking Prozac, but it has not made much difference. She
closely follows reports on the Internet and in fibromyalgia
and chronic-fatigue newsletters, searching for possible solutions. "I've
tried everything," she went on. "I have two shelves in my kitchen
cabinet that contain every supplement imaginable. I've taken coenzyme Q10. I
taught myself to inject bovine-liver extract. Because some people think it is
hormonal, I took birth-control pills to try to even out symptoms of menopause.
But they were not beneficial." Liz, who was reared as an Episcopalian but
is a longtime agnostic, wondered whether will power and prayer might help her. "I
went on the road to Damascus,
but that hasn't helped, either." Finally, last year, she gave in and took
time off from teaching because of the pain, fatigue, and episodes of what is
commonly referred to as "fibro-fog," or an inability to think
clearly.

We talked about the nomenclature, and about how fibromyalgia
seems to be merging with chronic-fatigue syndrome. "Chronic fatigue has
become a humiliating term-the yuppie disease, begging to be laughed at,"
Liz said. "Fibromyalgia is more socially
acceptable." When I mentioned that doctors call fibromyalgia
a wastebasket diagnosis, she bristled: "They'd love to throw me
away."

Careless and disparaging language can certainly further alienate patients
who are in desperate need of care, and yet opponents of the current treatment
of fibromyalgia say that unquestioning acceptance of
the condition may be equally harmful. Some, like Dr. Thomas Bohr, a neurologist
at Loma Linda University School of Medicine, in California, and Dr. Arthur Barsky, a professor of psychiatry at Harvard, contend that
even honoring this bundle of symptoms with a medical label may be doing more to
make people sick than to cure them. These doctors don't claim that the symptoms
of fibromyalgia are not real, only that their origin
lies in the mind and not in the peripheral nerves of the body.

But what about the physiological research cited by Dr. Robert Bennett? Like
many other neurologists, Dr. Bohr considers these studies deeply flawed.
"It is well established that depression, anxiety, and other disorders show
abnormalities on scans and in biochemical markers," he told me. "You
need as controls people with comparable psychiatric problems and levels of
distress." Each year, he continued, there is excitement about the
discovery of some new chemical or protein in the brain. "First there was
serotonin, then growth hormone, and now substance P. None of the data are
convincing," Bohr said. He also disputes the analogy Goldenberg draws
between fibromyalgia and phantom-limb pain.
"With phantom limb, you have a real lesion-the limb has been cut off!
Nerves and muscle and bone are damaged. People with fibromyalgia
have intact limbs and no evidence of pathology like severed tissues."
Moreover, with fibromyalgia the pain is not localized
in an area of past injury but generalized throughout the body, and cannot be
explained by the anatomical connections of nerves to brain.

Many Americans suffer the symptoms associated with fibromyalgia,
according to Dr. Barsky: he cites data showing that a
third of healthy people at any one time will have aches and pains in their
muscles, and a fifth will report significant fatigue. Furthermore, nearly
ninety per cent of a general healthy population report at least one somatic
symptom, like headache, joint ache, muscle stiffness, or diarrhea, in any
two-to-four-week period. A typical adult has one such symptom every four to six
days. Barsky thinks that for people prone to fibromyalgia the everyday somatic symptoms become a growing
focus of attention. "They become trapped in the belief that their symptoms
are due to disease, with future expectations of debility and doom. This
enhances their vigilance about their body, and thus the intensity of their
symptoms."

Barsky traces fibromyalgia
back to the nineteenth century, to neurasthenia, a condition of severe nervous
exhaustion. "Over different historical times, these syndromes rise, morph
into one another, subside, and then reëmerge
before our eyes. They are manifestations of the same sociocultural
process. Only now, with the Internet and mass media, they spread more quickly
and more widely." He also points out that there are powerful groups with
vested interests in the perpetuation of these syndromes, including doctors and
other practitioners who run clinics, lawyers involved in disability litigation,
and drug companies marketing treatments of unsubstantiated benefit. This locks
the patient into a closed circle of belief.

Dr. Bohr is distressed that even responsible medical advocates who believe
in the syndrome have been able to do very little for their patients. During the
late eighties and nineties, a group of researchers that included Goldenberg and
Wolfe monitored more than five hundred patients who were receiving care at some
of the top fibromyalgia centers in America. After
seven to ten years, there was no significant diminution in pain, psychological
distress, or degree of disability. "I'm labelled
as Dr. Unempathy, because I scientifically criticize
the label 'fibromyalgia,'" Bohr said. "But
these people are not being helped, and they desperately need to be helped. We
have to change the words. We have a huge problem with Descartes here. I am a
monist. I don't split mind and body. In America, physical disease travels
first class, but psychiatric disorders are considered less than coach-they are
cargo. We can call it a chronic-pain syndrome, or drop the stigma and see it as
linked to a psychological disorder."

Both Bohr and Barsky believe that learned behavior
can be unlearned, and that a reclassification of the syndrome could encourage new
approaches to treatment. Recent studies in England, for example, in which
cognitive-behavioral techniques were applied to those suffering from
chronic-fatigue syndrome, have been very promising. First, patients are told
that they cannot injure themselves by engaging in tasks that increase their
pain. (This is contrary to the general assumption that pain is a physiological
red flag.) They are challenged to perform increasingly strenuous activities and
are shown that they have the physical capacity needed to complete them. This
experience shifts their focus away from their symptoms and somehow reduces
their perception of pain and fatigue. Nearly two-thirds of the study's
participants improved in their ability to work, compared with only one-fifth in
the controls; three-quarters were assessed to have a satisfactory outcome
versus one-quarter who were treated with the usual therapies.

Dr. Barsky is trying to conduct a controlled study
similar to the ones done in England.
Unfortunately, he has found it difficult to attract volunteers: many patients
who have been approached have declined or are not eligible because they are
taking certain medications or are involved in compensation litigation. Not long
after speaking to him, I called Liz Albright, and told her that there were
several studies suggesting significant benefits from cognitive-behavioral
therapy. "The distress I have is from my illness, not from social
forces," she replied. Her voice cracked, and she paused for a moment to
compose herself. "It's like being in prison in your body." She would
never see someone like Dr. Barsky, she explained.
"I won't see any doctor who questions the legitimacy of what I have."

Perhaps the most unlikely opponent of the fibromyalgia
diagnosis I encountered was Dr. Frederick Wolfe, the very man who helped bring
the term into being. Now he wishes that he could make it disappear. Although he
describes Dr. Goldenberg as a "saint" for his dedication, he has
largely embraced the position articulated by Bohr and Barsky.
"For a moment in time, we thought we had discovered a new physical
disease," he said. "But it was the emperor's new clothes. When we
started out, in the eighties, we saw patients going from doctor to doctor with
pain. We believed that by telling them they had fibromyalgia
we reduced stress and reduced medical utilization. This idea, a great, humane
idea that we can interpret their distress as fibromyalgia
and help them-it didn't turn out that way. My view now is that we are creating
an illness rather than curing one."

His experience suggests that the number of tender points in patients with fibromyalgia correlates most closely with their degree of
unhappiness: many of his patients have a history of psychiatric illness,
smoking, obesity, marital trouble, or childhood sexual abuse. "When I
press, I am not just saying, 'Does that hurt,'" he told me. "I am
saying, 'How is your life?'" Dr. Wolfe believes that an often cited study
claiming that there is no higher incidence of psychiatric illness among patients
with fibromyalgia than there is among general medical
patients is flawed, since the control group had a very high rate of
psychological illness compared with the general population. "I do believe
there are some people who hurt all over and have no psychiatric disorder,"
Wolfe says. And he also believes that his fibromyalgia
patients are experiencing genuine pain. "But, if you give them the
diagnosis of fibromyalgia, pain is allowed to
dominate their life. By receiving this diagnosis and taking medications, people
become card-carrying members of the fibromyalgia
club."

The proliferation of legal cases concerning fibromyalgia
and its possible causes is a source of great irritation to Wolfe. Fibromyalgia is a very convenient diagnosis for lawyers to
use in arguing for disability, since it is essentially self-reported. Data from
a study Wolfe did of 1,604 patients at six medical centers indicate that more
than a quarter of fibromyalgia patients receive
disability payments. In Wichita, before the American College of Rheumatology
criteria for fibromyalgia were introduced, the
disease accounted for less than twenty-five per cent of Social Security
disability awards; afterward that figure increased to forty-six per cent.
"Lawyers call me and ask, 'Does the patient have fibromyalgia?'
I know that if he doesn't have it he will soon."

Wolfe says that it's not that people lie; it's simply that, in these cases,
there is no objective measure of who is ill and who is not. Wolfe would be the
first to acknowledge that the diagnostic criteria for fibromyalgia
have not fulfilled their original purpose. How, then, should doctors respond to
its spread? "If we underplay this, it will come down to a more minor level
or disappear. We should diagnose it less. I think we should stop using the 'F'
word with patients, since it doesn't help them get better.:
Wolfe paused. "Of course, not using the word doesn't mean that they will
get better, either."

Wolfe's pessimism was not unusual; the anger and despair engendered by fibromyalgia have infected physicians as well as patients.
In fact, fibromyalgia has become such a contentious
medical topic that most of the doctors I spoke with specified that their views
were off the record. Some feared that any hint of sympathy would cause a deluge
of referrals; others worried that voicing skepticism about the syndrome would
make them vulnerable to public attack. Dr. Bohr, for example, has received more
than two hundred pieces of hate mail, and has been lambasted by fibromyalgia advocates on the Internet and in newsletters.

Many doctors were also gloomy about the long-term prognosis for fibromyalgia sufferers; the published data on patients like
Paula Cortez and Liz Albright-patients who have been cared for in specialty
rheumatology clinics and have received the usual combination of psychiatric
medication, analgesics, and stretching exercises-have been extremely
discouraging. And yet these same doctors regularly refer patients to clinicians
like Dr. Goldenberg. They are ready to forgo the income and tacitly endorse a generic
program in order to park the patient with someone who believes in the malady
and is willing to oversee a condition that is not likely to improve.

The vocabulary of medicine is woefully inadequate when it comes to
describing the complex interactions between mind and body. Although we are
gradually accepting their interconnectedness (it is all right to say, for
example, "I am under a lot of stress at work, and my lower back is killing
me"), no terms exist to describe how physical experience-Liz Albright's
sinus surgery, Paula Cortez's pregnancy-is imprinted on the molecules in the
brain. No terms explain how emotion and perception-thoughts and fears and
uncertainties, formed by electrical charges at neuronal synapses and by
hormones on cellular receptors-transform themselves into what we feel as
physical pain. So we fall back on language that is incomplete, encompassing
only fragments of a biology beyond our comprehension.
While we claim to be monists, we still think in terms of soma and psyche, and
these ancient words inform our approach to therapy.

Daniel Rooks, who directs the Be Well program at Boston's
Beth Israel Deaconess
Medical Center,
has sought to move away from the divisions over nomenclature and meaning.
Forty-three years old, with thinning black hair, wire-rim glasses, and a
precise manner, Rooks has a doctorate in physiology
and a special interest in how exercise may alleviate pain and improve mobility
in patients with rheumatic diseases. In the past, he has worked primarily with
patients who have osteoarthritis; recently, however, he has seen more and more
patients with fibromyalgia. A newcomer to the field,
he was shocked not only by how much misinformation he found on the Web but also
by the mantra-like insistence among patients and doctors alike that it is a
chronic disorder. Without any pathology in muscles or tendons, he thought, why
conclude that the prognosis is so dire? He set out to prove that patients could
get better.

In 1998, he did a controlled twenty-week study. The population he studied
was physiologically and psychologically heterogeneous: "tall and short,
heavy and thin, wired and laid back, senior V.P.s in
major companies and people who are homemakers." Seventy-eight patients who
had received a diagnosis of fibromyalgia (many of
whom had been followed for years by rheumatologists) entered the trial.
Fifty-six completed it, and the results were extremely encouraging. The study
included a three-times-a-week program of escalating cardiovascular exercise and
flexibility and strength training. In addition, a discussion group with very
strict rules was set up: "It was not a gripe session about how angry
everyone feels toward doctors, or how nothing has helped, but a discussion of
how to problem-solve." After twenty weeks, the patients showed a
statistically significant increase in upper- and lower-body strength, a
decrease in pain and fatigue, and an increase in over-all level of
functioning-all objectively measured.

Rooks feels that to debate the appropriateness of the label "fibromyalgia" now, ten years after it was coined, is
almost beside the point. "The term won't change soon," he says.
"What is key is that I tell the patients I accept
them for who they are-we're not judgmental." In essence, the Rooks program
is a form of cognitive behavioral therapy, but, unlike Barsky's,
it is not presented as such: rather, it is cast outside the mind-versus-body
paradigm. In his program, one could say, action precedes rather than follows
from language. "You don't tell the patients they can get well-you show
them," Rooks says. "This is what finally breaks down the barriers in
the mind. The person proves to himself every time he does the exercise that he
can succeed." The next step is for Rooks to determine how long the
improvements last and what can be done to sustain them.

Fibromyalgia has largely been defined by
physicians. Rooks's study has shifted the focus of
patients' hopes away from the medical establishment, and this can be
liberating. "What was most gratifying for the patients was that they were
doing something for themselves that made them better," Rooks told me.
"They saw they did not have to be so dependent on doctors."

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