Stephanie Hester, of Dana Point, Calif., said she's been in pain her whole life.
Accidents in childhood, high school and college gave her painful neck and back problems. In 2001, she was diagnosed with fibromyalgia. A few years later, an exposure to black mold ravaged her immune system and sent daily waves of pain throughout her body. Since then, Hester has endured dull aches and sharp pains, migraines and depression.
"I'm almost always in pain in some form," the 41-year-old said.
Popping pain pills with no relief and a parade of disbelieving doctors left her feeling defeated and frustrated.
"I've been to a lot of doctors over the years, and a lot of them told me that the pain is all in my head. They always say, that can't be, there's got to be some reason," Hester said. "I think because they didn't know how to quantify it, they just brushed it off and said it couldn't be. The other response was just to throw prescriptions at me."
Hester is one of millions of Americans struggling with chronic pain. More than 116 million Americans struggle with pain that lasts for weeks or years, according to a 2011 report from the Institute of Medicine. That number, nearly one third of the U.S. population, is more than the number of patients with cancer, heart disease and diabetes combined. It may even be an underestimate, since the IOM didn't include the numbers of children, prisoners, military personnel or people in long-term care facilities who have chronic pain in their estimates.
The costs of the problem are huge. The IOM's report estimates that chronic pain costs the U.S. up to $635 billion each year, both in medical costs and in wages lost when pain keeps people from working.
But despite America's big pain problem, the care offered to patients in pain is woefully inadequate, according to an editorial published today in the New England Journal of Medicine.
"Pain is real and it is a complex problem, but the responses within the health care system to help people deal with it are pretty inadequate," said Dr. Noreen Clark, one of the editorial's authors and director of the Center for Managing Chronic Disease at the University of Michigan.
Pain can come from an injury that never heals correctly, a disease like cancer or HIV, or it can be an illness all its own, when the nerves associated with pain in the body become constantly active. Without an obvious cause of pain, doctors may run tests, do surgery and prescribe powerful medications to relieve the patient's suffering. But in some cases, these solutions do nothing more than drive up the cost of chronic pain care.
"Repeated MRI scans and CT scans done for headache, back pain or other pain significantly inflates the costs," said Dr. Timothy Collins, assistant professor of neurology at Duke University Medical Center. Although doctors give the scans to figure out why a patient still hurts, "they don't actually help care for the pain or give new information."
Without an obvious source of the pain, physicians may end up blaming the patient.
"For some, there's a willingness to accept the pain as real. But for others, if they can't see it, find it, or measure it, then it must be in [the patient's] head," said Dr. Philip Pizzo, one of the editorial's authors and dean of the Stanford University School of Medicine. "You can see how that would reinforce the suffering and depression that surrounds pain."
Powerful painkillers like vicodin or percocet relieve pain but aren't intended to treat patients long-term. And many physicians are reluctant to prescribe them for fear of the pills getting into the hands of painkiller addicts, not to mention the legal consequences they could face.
"If you can't find an explanation for the pain, then you're reluctant to prescribe medications and have them become an ongoing long-term treatment plan," said Dr. Glen Stream, president of the American Academy of Family Physicians. "The challenge is trying to sort out who's in pain and who potentially is drug-seeking. There's a lot of pressure on physicians to be vigilant in their prescribing. We try to balance that with the desire to not have people suffer needlessly."
How to fix America's pain problem? The issue "will require a cultural transformation in the way clinicians and the public view pain and its treatment," Pizzo and Clark said in an editorial published today in the New England Journal of Medicine.
According to the IOM report, the transformation should start in medical schools. Doctors say medical students and current professionals are woefully undereducated in how to treat patients in pain. In a survey of 117 medical schools, only a handful reported including even a few lessons on pain for their students. The problem is large enough that several states have ordered currently practicing doctors to get a certain amount of additional training in chronic pain management.
Although there are doctors who specialize in treating chronic pain, their numbers are too few to care for every patient. The IOM reports that there are fewer than 4,000 pain specialists in the U.S.
Other changes will have to reach deeper into the U.S. health care system. Doctors say the current system of medical reimbursement doesn't allow them to spend a long time with patients treating illnesses that are not easily defined on a medical record.
"Physicians need to be empowered to take time and listen to their patients," said Dr. Doris Cope, director of the Pain Medicine Program at the University of Pittsburgh Medical Center. "Unfortunately, the way the medical system works today, everything is very mechanized and is supposed to fit into a box. But patients are unique in their pain and suffering."
And then, there's overcoming the notion that medical help must always come with a pill or under the knife. The IOM report recommends that patients use a variety of medical tools to confront their pain, including physical therapy, rehabilitation, even alternative treatments like meditation.
Hester said she found the greatest relief in holisitic treatments and physical therapy. She does exercises for about 45 minutes each day and sees a doctor three days per week for spinal decompression and physical therapy. The treatments help, but they are not covered by her medical insurance, so she and her husband are using the money they had saved for a downpayment on a house to cover the costs of her care – about $23,000 in the last year alone.
"It's hard to force yourself to get up and be active, to say, I'm going to get out and at least walk today, take all my supplements, do all my therapies," Hester said. "It does interfere with life. I'm trying really hard not to let it."