As I sit through session after session at PainWeek, an annual medical conference held this year in Las Vegas, the message I hear is that much of the responsibility for effective chronic pain treatment rests on the patient’s shoulders. Whether pain comes from a bad back, migraines, arthritis, fibromyalgia, or—in one case cited by a psychologist—from getting a leg blown off by an improvised explosive device in Iraq, a lot of the heavy lifting is the patient’s.
That’s because chronic pain—pain that lasts months and years, and becomes a disease of its own—is a complex interaction of mind and body that can savagely alter the victim’s world view. Although there are drugs, surgeries, and rehab procedures for the body, most work only in conjunction with a lot of patient effort. You’re in agony, yet you’re told to increase activity, try some exercise, maintain a positive outlook, and learn psychological tricks that can shut the “pain gates.”
With the mysterious syndrome called fibromyalgia, for example, one expert here noted, “The ultimate responsibility lies with the patient. We don’t truly have authority over this disease.”
Or, as a pain psychologist, who works with individuals, groups, and families, put it: “I work hard, and if you’re not working as hard at this as I do, there’s something wrong.”
This sounds like harsh medicine from caregivers who devote their lives to the puzzle of chronic pain, which affects tens of millions of Americans.
The good news is that experts site remarkable improvement in patients who work hard with specialists in sleep, rehab, psychology, analgesics, complementary treatments, and more. The bad news is that family doctors spend scant minutes with most patients, and they may not understand the urgency of starting so-called multidisciplinary care. Worse, many insurance companies are loath to shell out for it.
The bottom line is that when pain lasts more than 30 days or so, sufferers must find a doctor who will work with them to get specialized treatment.
Dr. James Giordano, PhD, a scholar of clinical bioethics at Georgetown University, says there’s a litmus test new patients can use: Ask your doctor to describe the mind-body aspects of chronic pain and the variety of treatments that can target it.
“If this is a physician who doesn’t acknowledge that pain affects the life, the world, the activities of the patient,” Giordano says, “then the patient needs to realize that this isn’t the clinician for them.”
To be a powerful pain patient, you’ll have to speak up.
“I think patients need to be very forthright,” Giordano says, “and engage the clinician, and also engage the third-party payer system. Far too often what I see is that the patient settles into the role of being, I won’t say the victim, but the marginalized person in this relationship.”
The stakes are high. A marginalized pain patient is someone who can suffer for years, decades, even the rest of his or her life.
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