By Sandra G. Boodman
Washington Post Staff Writer
Tuesday, August 29, 2006
They regularly visit doctors' offices complaining of baffling combinations of symptoms for which no medical cause can be found: chest pain one month, gynecologic problems the next, followed by headaches or crushing fatigue.
Hospital staff privately refer to them as "crocks" -- people who repeatedly show up in emergency rooms demanding expensive, exhaustive tests to unearth the elusive cause of their numerous symptoms. Reassurance that their tests don't show anything amiss has the opposite effect, convincing these patients that physicians haven't looked hard enough -- or don't believe them.
While everyone at some point experiences symptoms for which no cause is found, patients who have what is known as somatization disorder suffer from a host of disabling problems. Most are women who develop the lifelong disorder during adolescence.
It's impossible to accurately determine how many patients have somatization disorder, although the problem "probably occurs on a continuum and accounts for many, many doctor visits," said Lesley Allen, an associate professor of psychiatry at the University of Medicine and Dentistry of New Jersey.
Between 0.2 and 2 percent of Americans have sufficient symptoms to fit psychiatry's strict definition of somatization disorder, but Allen and other experts say the problem, which frustrates patients and their doctors, frequently goes undiagnosed. To further complicate matters, about 40 percent of these patients also suffer from a related disorder, hypochondria -- a persistent, irrational fear of serious illness.
Fearful of being dismissed as crazy or fakers, patients typically shun mental health practitioners and spend years bouncing from doctor to doctor, undergoing expensive diagnostic workups and even surgery to alleviate their pain. One study found that patients with the disorder incur medical expenses that are six to 14 times higher than the national average.
Now Allen and her colleagues, and researchers at Michigan State University, appear to have demonstrated an effective treatment for somatization: cognitive behavioral therapy (CBT), which teaches patients practical skills to help manage their symptoms. Both teams last month published randomized, controlled studies showing that CBT coupled with supportive counseling, relaxation techniques, moderate exercise and in some cases antidepressants diminished the severity of their symptoms.
The patients' ability to function, as measured by the number of stairs they could climb and the distance they could walk, was improved, and they reported being less troubled by 40 symptoms, including headaches, nausea, joint pain and difficulty swallowing.
"It's not a cure," said Allen, whose study, funded by the National Institute of Mental Health, appears in the July 24 issue of the Archives of Internal Medicine.
Allen and her colleagues recruited 84 patients between 18 and 70 years of age who had been diagnosed with somatization disorder. Half received 10 weekly sessions of cognitive treatment while the rest did not. Fifteen months after they started treatment, all patients were evaluated by researchers who did not know which ones had received CBT.
Forty percent of the 17-member CBT group were deemed "very much improved" or "much improved" using a widely accepted rating scale, compared with 5 percent, or two members, of the control group.
In the Michigan State study -- published in the Journal of General Internal Medicine -- 100 patients treated for a year with cognitive therapy and antidepressants were nearly twice as likely to show improvement in their level of functioning and decreased use of medical services as a similar number who did not receive therapy.
Norman Jensen, an emeritus professor of internal medicine at the University of Wisconsin and an expert in treating such patients, called Allen's study "very important and very encouraging" because it is one of the first to demonstrate that cognitive therapy works for patients whose disorder has been considered largely untreatable.
Dealing with such patients "is a pain in the butt for doctors," said Jensen, who treats them. "Many people suffer enormously from it, and their doctors waste millions of health care dollars" in futile attempts to diagnose their problems.
"These people alienate themselves from friends and family with their discussion of their constant symptoms," Jensen added. "They tend to be very lonely and isolated."Wired for Pain?
These patients, Jensen and other experts say, are much more focused on their bodies than other people and much less able to ignore or accept what others regard as normal aches and pains. One theory, so far unproven, is that their nervous systems are hypersensitive.
Fairfax psychiatrist Thomas N. Wise, editor of the journal Psychosomatics, said primary care doctors typically see these patients. "Psychiatrists rarely see these folks because they're so focused on a medical explanation," said Wise, a professor of psychiatry at the Georgetown and Johns Hopkins medical schools. But, he added, it's important for doctors who can't pinpoint a physical cause not to assume one doesn't exist or that the pain isn't real.
Composer George Gershwin, Wise recalled, was told by a phalanx of New York's most eminent doctors that his splitting headaches were the product of his neuroses. In fact, they were caused by a malignant brain tumor that killed the 38-year-old composer in 1937.
Arthur Barsky, a professor of psychiatry at Harvard Medical School and expert on medically unexplained symptoms, said he considers cognitive therapy essential.
"I focus on the way people think about their symptoms and try to decrease their hyper-vigilance," said Barsky, who has published studies of both somatization and hypochondria. He teaches patients to stop scrutinizing how fast their heart is beating, for example, to quit touching their neck to see if a lymph node is swollen, and to avoid searching the Internet for clues to their symptoms.
Barsky advises patients to substitute those preoccupations with a pleasurable or distracting activity. Patients who succeed tell him that they are still aware of the physical problem -- that lump in their throat, for example -- but tend not to think about it and consider it less bothersome.
Cognitive behavioral therapy is aimed at reducing specific symptoms by challenging the dysfunctional, irrational thoughts that helped create and perpetuate them. Among the thoughts commonly expressed by somatizing patients: "This is never going to go away" and "I'm never going to be able the live the life I want," said New Jersey's Allen. Treatment involves exploring and then changing those thoughts, which in turn ameliorate symptoms.
Most experts say that many patients with unexplained symptoms have histories of childhood physical or sexual abuse or other trauma, but it is not clear whether these are related.
"Childhood experiences are presumably important," Barsky said, "but there are no good data" about their effect.
Another goal, Allen said, is to explore the "secondary gain" patients derive from illness -- the unconscious benefit that accrues from being a patient.
"A lot of people adopt the sick role," she said, and receive more attention from their husbands or other family members when they are in pain.
Allen and others say that a major obstacle in treatment is patients' singular lack of insight into their own problems.
"It's a big struggle in treatment," Allen said. "When you ask, 'What are you thinking? What are you feeling?' the answer tends to be, 'I don't know.' "Looking for Trouble
One danger such patients face, said Fairfax's Wise, is the natural inclination of doctors to order tests, prescribe medicines and perform procedures out of a fear of missing a serious medical problem. Such interventions, he warned, carry their own risks.
Jensen said he vividly remembers one such patient, whom he treated for 28 years. She was referred to him by a surgeon who had refused to operate on her for abdominal pain because he couldn't find an organic cause.
Jensen said he began seeing the woman every month or two for 20 minutes but ordered tests sparingly and only if he suspected something new was wrong -- an approach first outlined by a psychiatrist in a New England Journal of Medicine article in 1986. Mostly, he said, he listened carefully and provided brief reassurance.
"She felt like we had a partnership, and we developed a certain personal fondness for each other," Jensen recalled. "She trusted that I wouldn't overlook or over-treat her."
But once when Jensen was on vacation, the woman went to an emergency room complaining of chest pain, one of her frequent symptoms. A physician unfamiliar with her history discovered a partially blocked artery and, assuming this was causing her pain, performed a cardiac catheterization.
During the procedure, the woman suffered a heart attack. She developed heart failure as a result and was dead within the year. She complained of chest pain until the day she died. ·