A longtime sufferer of lower back pain, Angie's List member Jill Biller recently moved to Palm Coast, Fla., from Virginia and just wanted a refill of the prescription painkiller hydrocodone. Instead, she says, the doctor "treated me like a junkie."

Biller is among the estimated 116 million sufferers of chronic pain in the United States, according to a study published in June by the Institute of Medicine, and nearly 60 percent of members who took an online poll say they suffer or have suffered chronic pain. Like many of them, Biller finds empathy, much less help, hard to come by.

Health care providers in the pain management category garner negative reviews at twice the average of other Angie's List categories - 20 percent of the 1,900 reviews filed in the past three years have C, D or F grades. Members report their health care provider didn't take their problem with pain seriously, and in an Angie's List online poll, 21 percent of respondents say they haven't found a good approach to managing their pain.

A common, costly ailment

Chronic pain differs from acute pain in that it lingers long after an injury has healed. And in some cases, it starts with no definable injury at all. Headaches, lower back pain and joint pain are the most common complaints, according to the Centers for Disease Control and Prevention, with joint pain the only one clearly associated with an underlying disease - osteoarthritis.

The pain can't be seen, felt or heard by anyone other than the patient, but one thing that can be measured is its cost - up to $635 billion a year in medical treatment and lost productivity, according to the study by the IOM.

"Pain is a disease," says Melanie Thernstrom, a chronic pain sufferer in Portland, Ore., author of The Pain Chronicles and a patient representative on the IOM committee. "It causes damage in the nervous system and in the brain over time. It is dangerous not to treat pain."

Treatment can involve medical management; physical, psychological or interventional therapies; and alternative treatments. Yet pain remains untreated - or improperly treated - in many cases, due to a range of factors that include doctors' lack of training and insurance companies' reluctance to pay for the most effective treatment, the IOM reports.

Expertise in pain management

Only 22 percent of 133 accredited U.S. medical schools teach chronic pain management, and even then it's part of a broader course, according to the Association of American Medical Colleges. It adds up to 11 hours of pain education in four years of training. In a 2009 American Medical Association survey, doctors ranked their pain management education 2.65 out of 5.

Board certified anesthesiologists, neurologists, psychiatrists or physiatrists can pursue certification in a pain medicine subspecialty by participating in a one-year fellowship in pain management and passing a written exam. About 3,400 of the approximately 130,000 specialists nationwide hold the pain medicine subspecialty certifications recognized by the AMA. Groups, such as the American Board of Pain Medicine and the World Institute of Pain, also offer certification, but lack of certification doesn't prohibit a doctor from specializing in pain management.

Experts say subspecialty certification doesn't guarantee quality care, but it typically indicates more in-depth knowledge. The IOM reports that medical boards in some states, including California and Florida, recognize only the AMA-approved or ABPM subspecialty certification, which allows doctors to receive insurance reimbursement at specialty rates.

Dr. Dan Carr, an anesthesiologist and founding director of the Tufts University School of Medicine's pain research, education and policy program in Boston, says people may complain more frequently about pain management because doctors - even those holding a subspecialty in pain medicine - are trained to focus on objective measures and procedures, yet pain also has social and psychological aspects many doctors don't know how to handle.

Numerous studies, Carr says, show pain sufferers feel better when somebody listens. "There is an enormous social component to pain," he says. "Patients will be more satisfied if they feel they have been cared for. That has more to do with their satisfaction with pain control than the actual intensity of their pain."

Other doctors are quick to prescribe pain medicine, rather than taking time to understand why a patient is suffering, says Dr. Loren Fishman, a highly rated rehabilitative medicine specialist with Manhattan Physical Medicine and Rehabilitation in New York. "In many cases doctors don't know anatomy well enough to find the causes," he says. "I prefer to find the cause and eliminate pain." About 90 percent of the time, he's able to wean his patients off medicine, he says, by using a multidisciplinary approach that could include surgery, yoga therapy and Pilates.

Seeking effective treatment

Dr. Perry Fine, an anesthesiologist and president of the American Academy of Pain Medicine, says patients should find another doctor if they feel like they aren't being heard or not making progress. "There is inadequate training and knowledge and understanding of pain," he says. "Consumers have to be a little more assertive than they have been in the past."

At the same time, "zero pain" is not a realistic expectation, he says. Instead, patients should expect treatment that will allow them to live with a "reasonable amount of pain with minimal disruption of daily life."

However, patients should expect to be taken seriously, Fine says. The doctor should answer questions about treatment, likelihood of improvement and consequences. In turn, he says, they should listen to the doctor who may suggest a multidisciplinary approach that may include exercise, physical therapy and mental health counseling.

In particular, counseling meets resistance with chronic pain sufferers. "They say, 'You don't believe me. You think it's all in my head.' Well, in fact, pain lives in the brain," Fine says. By definition, chronic pain doesn't go away, he adds, so sufferers need to learn healthy ways to combat the depression, anger and frustration that often go hand-in-hand with it.

Vicki Cambridge of Wildomar, Calif., has seen at least seven medical professionals - including an acupuncturist, neurosurgeon, chiropractor and rheumatologist - since hurting her back four years ago in a car wreck. And because of the pain, the 52-year-old can no longer work her IT job. Instead, Cambridge focuses on finding a cure. "I'm not going to live the rest of my life being disabled," she says. "I know there is someone or something that can help me."

Biller says she's found relief through hydrocodone and cortisone shots thanks to highly rated Dr. Elena Stanescu with The Physicians Pain Center in St. Augustine, Fla. But she's still upset with how she says Dr. Vinod Malik, a board-certified anesthesiologist, treated her like a junkie and cut her off cold-turkey from hydrocodone instead of weaning her off it.

Malik, owner of PRC Associates Interventional Pain Management with locations in Daytona Beach, Fla., and several surrounding cities, has an overall negative grade based off Biller's report. Malik says he focuses on the surgical aspects of pain management such as epidural steroid injections and lumbar decompression. "All she needed was medication management, and we opted not to do it," he says. "Sometimes you cannot make everybody happy."

Costs of pain treatment

Biller and Cambridge say insurance pays for most of their treatments with a few exceptions. Cambridge paid the full cost of spinal decompression, about $3,000, she says, and $45 a session (reduced from $60 because of her insurance) for twice-a-week acupuncture for two months. Biller's copay includes $80 per cortisone shot and $20 per office visit.

Both regimens rely heavily on medical procedures, which experts say insurance companies favor even though research indicates chronic pain responds best to a multidisciplinary approach.

Dr. Judy C. Lane, highly rated neurologist and medical director of the Head Pain Center in Englewood, Colo., says chronic pain, particularly her specialty of chronic migraines, requires a cognitive approach. New patient consultations can take up to two hours as she tries to understand their medical history. "If I bill that to insurance, that time would not be compensated," she says, adding that she no longer accepts insurance.

Instead she charges $725 for the initial evaluation and $175 for a follow-up visit and doesn't file insurance claims. Some insurance plans reimburse her patients who submit their own claim, others don't. But once she finds a regimen that works, she says patients can return to a family physician for care.

Fishman encounters the same problem in his treatment of back pain: Insurance companies won't pay for yoga, which he says effectively manages or eliminates pain in many of his patients. "If I teach a patient something in the office that's classified as yoga, I can charge for it," he says. "But if I send a patient to a yoga therapist, there's no way insurance would cover that."

Susan Pisano, spokeswoman with America's Health Insurance Plans whose 1,300 member companies cover 200 million Americans, says insurers make their own decisions, but in general, alternative therapies are covered only when there is evidence they are safe and effective for a specific condition. "Some therapies may work for some conditions but not others," she says.

In its report, the IOM committee exhorts the insurance industry to make further strides. "There are some simple approaches that are not well-covered by insurance," says Dr. Philip A. Pizzo, committee chairman and dean of the Stanford University School of Medicine. "This is as simple as physical therapy or rehabilitation therapy that may be appropriate and necessary for certain pain conditions."

Ultimately, Pizzo says his committee sees a need for cultural transformation in the health care industry toward people with chronic pain. "Their suffering is not something they should be blamed for or their pain viewed as something they have made up," he says. "All too often in the absence of knowledge there is an attribution of blame. We need to get over that."