Hurting More, Helped Less? Fibromyalgia Story
July 1, 2002
By Nancy Wartik
DR. CHRISTINE MIASKOWSKI still remembers the patient, a woman in her 50's, who visited the pain management service at the Albert Einstein College of Medicine in the Bronx, where Dr. Miaskowski worked in the 1980's. The woman was suffering from a burning, prickling pain — punctuated by shooting spasms —of a kind that tends to strike after breast cancer surgery, when the incision has healed and patients look outwardly fine. "This woman literally had a frozen shoulder because of the pain; she couldn't move her arm," Dr. Miaskowski says. "Her surgeon kept telling her, `It will get better, it will get better.'
"It got worse. She went from physician to physician, and no one believed her pain, or offered her any painkillers. She'd saved the medications she'd gotten, mostly anti-anxiety drugs like Valium and she'd decided if we could not help her, she was going to commit suicide."
Pain relievers, including morphine, and physical therapy brought the woman relief, but her story lingered with Dr. Miaskowski, who is the chairwoman of the physiological nursing department at the University of California, San Francisco, and president of the American Pain Society. She is currently applying for a grant from the National Institutes of Health to study, among other things, this form of pain. But even 20 years later, Dr. Miaskowski says: "The majority of breast cancer surgeons will tell you this syndrome doesn't exist, doesn't occur. One surgeon I asked told me, `You can study it in my patients but it's not actually a problem.' "
For Dr. Miaskowski, as for some of her colleagues, such remarks reflect a well-entrenched, little-recognized inequity in the world of pain management. Those who work in this world have long known — and studies solidly back them up — that health care providers in general do a poor job of treating pain of all kinds: the throbbing ache that follows surgery; the persistent pain of chronic disorders like backache or migraine; the bone-deep torment that attends life-threatening diseases like cancer.
But more recently, a small group in the medical community has begun to ask if women, even more so than men, are at risk of having their pain ignored. Last fall, a report in The Journal of Law, Medicine and Ethics titled "The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain," concluded that "women's pain reports are taken less seriously than men's, and women receive less aggressive treatment than men for their pain." It added that women were "more likely to have their pain reports discounted as 'emotional' or 'psychogenic' and, therefore, 'not real.' "
The conclusions take on extra weight because they dovetail with other data gathered in recent years, suggesting that when it comes to pain, women don't start on a level playing field. A wide range of studies has shown that women, on average, tend to feel pain (in particular, acute pain, the sort caused by direct injury) more intensely than men do, while they are also more vulnerable to a variety of painful conditions that include migraines, arthritis, the muscle disorder known as fibromyalgia, temporomandibular disorders (a type of jaw problem), pelvic pain and abdominal pain of various kinds. (Back pain, from which men and women suffer at equal rates, seems to be one of the few exceptions to the rule.)
"Women are at higher risk than men for experiencing almost every type of pain that's been studied," says Dr. Linda LeResche, an epidemiologist at the University of Washington in Seattle. "They're more likely to have multiple pain conditions. They're more likely to be disabled by the pain than men are. One possible interpretation for why we're seeing this is simply because it's more culturally acceptable for women to talk about pain. But there's lab work and animal work that leads me to believe that's not the only thing going on."
Exactly what is going on is a subject of growing interest in pain medicine; in the last decade or so, sex differences have become a prime topic in the field. Some of the more clear-cut data comes from laboratory experiments of how much pain women, versus men, can tolerate. "So many studies have been done now and the story stays the same," says Roger B. Fillingim, a psychologist at the University of Florida. "Women in general have a lower threshold and lower pain tolerance than men. It's a moderate difference but a real effect." Other work, with both animals and humans, is pinpointing genetic, hormonal, biochemical and anatomical factors that contribute to sex differences in pain.
But even as they explore the nuts and bolts of the nervous system, many researchers emphasize that pain is also a highly subjective, psychologically influenced experience. "Pain is a perception, it's a product of the brain," says Dr. Allan I. Basbaum, chairman of the department of anatomy at the University of California, San Francisco. "It's generated by transmission of an injury message but also by what that message means, how it's interpreted. Once the message gets to the brain, it may or may not lead to pain perception. If you imagine looking at a Mondrian, there are a few bars and stripes, yellow, black, a little red. But it can bring tears to some peoples' eyes, for others it does nothing. Same stimulus, different experience. That's how pain is processed."
THIS perspective, some researchers think, helps explain why the sexes hurt differently -- and perhaps why women hurt more.
"The overriding thing in someone who ends up in chronic pain are the individual differences," says Dr. Karen J. Berkley, a neuroscientist at Florida State University. "Someone's past history, how they've come to be in the situation they're in, the environment they live in. Insofar as men and women bring different backgrounds and experiences to pain, that's a big part of where sex differences are going to play out."
Women are more prone to notice when others are in pain, Dr. Berkley says. "They're raised with a lot of attention given to nurturing, empathy, social interactions," she says. "They're more attuned to what's harmful than men are. They're better pain experts. And so they end up having more pain than men." That doesn't mean, Dr. Berkley and other specialists in the field stress, that women are to blame for their own pain, or that chronic pain with no obvious physical cause is "all in someone's head." Rather, it suggests the pain process may be initiated in ways scientists still don't understand, by things less palpable than losing a filling or stubbing a toe.
Given women's greater susceptibility, it makes sense to treat their pain as aggressively as men's -- if not more so. But that is not necessarily what happens when women turn to the health care system, according to the authors of the report in The Journal of Law, Medicine and Ethics, Diane Hoffman, the director of the law and health care program at the University of Maryland School of Law, and Dr. Anita Tarzian, a research associate in that program.
A 1994 study at the University of Connecticut that looked at medical records of appendectomy patients in three hospitals showed that women received significantly lower doses of painkillers immediately after surgery than men did. A 1996 study of more than 350 patients with AIDS-related pain, done at the Memorial Sloan-Kettering Cancer Center in New York, found that being female doubled the risk of being undermedicated, though women's pain levels were slightly higher than men's. "Gender turned out to be the most powerful predictor of undertreatment and that wasn't what you'd think," says Dr. William S. Breitbart, chief of psychiatry at Sloan-Kettering. "With IV drug users in the study, you'd think that would be the most powerful factor preventing someone from giving a patient opioid analgesics."
Findings are similar with cancer patients. Women had 1.5 times the risk men did of getting inadequate doses of painkillers, according to a 1994 study in The New England Journal of Medicine, which compared treatment of more than 1,300 male and female cancer outpatients in 54 medical centers. Just last year, a still-unpublished study at the University of California, San Francisco, looked at painkillers prescribed to male and female bone cancer patients. Precise figures from the study are not available yet, but a version posted on the Internet shows there are still sharp inequities in how men and women are medicated for equal levels of discomfort.
None of these studies looked at why women got short shrift. But clues come from other research into how health care providers think about and interact with female patients. Women, for example, tend to be more expressive and emotional than men in describing their symptoms, and that may work against them. "The stereotype is that women exaggerate their pain complaints," Dr. Breitbart says. "That they're quote, unquote hysterical. When they say their pain is an eight, it's really a six." And yet, he suggests, women, if anything, may try harder than men to cooperate in their own care. Results from one study he did, Dr. Breitbart says, showed "women are much more sensitive to being perceived as problematic patients." It's a finding, he says, "that would seem to suggest they're not exaggerating their pain complaints, they're doing the opposite."
But confronted with the same symptoms in a man and a woman, doctors lean toward attributing a man's problems to physical illness or pain, a woman's to psychological issues.
"I've been in the exam room with quite a few physicians and patients," says Dr. Judith Paice, a pain specialist who holds a nursing Ph.D. and is in the division of hematology and oncology at Northwestern Memorial Hospital in Chicago. "I often end up serving as a coach for patients. I've observed so many times that a woman will feel stressed and start to cry. I can just see and feel the physician's response. They'll articulate afterward, 'Oh, this is a patient with emotional issues, it's probably not pain.' It's easy to disallow the physical pain, once someone starts crying."
One patient with facial pain that is disrupting her life starts to sob as soon as she comes in to see the doctor, Dr. Paice says. "I coach her so that when she sees the physician, she uses every resource she can muster not to cry," she said.
Women may also be badly served by conventional wisdom that says they handle discomfort better than men. "It's tied a lot to their bearing children," Ms. Hoffmann says. "There's this notion men could never go through that. People will say, 'If men had to bear children, we'd have far fewer children.' " And that sometimes translates to a belief that women are better able to cope with pain, she said.
Not everyone in pain medicine accepts the idea that women are more undertreated for pain. They cite studies that have not found evidence of such bias and argue that the definitive research remains to be done. "My own interest in this area came out of children's pain," says Dr. Anita Unruh, an occupational therapist at Dalhousie University in Halifax, Nova Scotia, who has looked extensively at treatment bias. "We had to do numerous surveys to prove pain in children was undertreated. You can't just take a couple of studies and say, 'Therefore this is true.' "
THAT'S not to say, Dr. Unruh stresses, that women in pain aren't underserved. "There's potential for a big problem," she says, but now, "we need to show in a number of different settings if this is pervasive."
But medical providers, Dr. Unruh says, need not sit back and wait for the data to come in: "If you're in health care you should be asking yourself, 'What biases do I hold personally about how men and women respond to pain? Does it influence my judgment?' " When providers become aware of stereotypes they hold about women, Dr. Unruh adds, men benefit, too: "If women are more likely to get psychological explanations for their pain, one might think that's primarily a problem for women," she says. "But all pain is a psychological experience. With women we pay attention to the emotional component. With men, we may respond to that not nearly as well, if at all."
Whatever future research may show about undertreatment of women in pain, everyone in the field agrees it's part of a larger problem that the medical community desperately needs to address.
"Everyone is undertreated," says Dr. Breitbart of Sloan-Kettering.
"Patients with more severe pain -- I think it's hard for clinicians to identify with. Most clinicians haven't had, and can't imagine, pain of 9 or 10 on a scale of 10, that keeps on being a 9 or 10."
Dr. Miaskowski, the president of the American Pain Association, agrees. "Undertreatment of pain is the meta problem," she says. "All kinds of pain are just not well treated." And, she adds, "the gender bias adds insult to injury."
Source: New York Times (www.nytimes.com). (c) 2002 New York Times.