For a decade after a 1982 ballet injury, Cynthia Toussaint was confined to her bed, writhing in pain from muscle spasms, unable to walk or to live a meaningful life.
Crippled by an array of illnesses, including chronic fatigue syndrome and fibromyalgia, the North Hollywood, Calif., singer and dancer was eventually diagnosed with complex regional pain syndrome, or CRPS.
The syndrome, then called reflex sympathetic dystrophy, or RSD, is neuropathic pain that moves from an injury site and spreads to other parts of the body. The pain ravaged Toussaint's vocal chords, robbing her of the ability to sing and even to talk.
The pain, like "being doused with gasoline and lit on fire," consumed her 24 hours a day. "In a blink of an eye, everything changed," she said.
Toussaint, now 50, even rehearsed her own suicide: "I was adapting to an upside down world of pain."
An estimated 116 million adults experience chronic pain, much of it preventable, and it is costing the United States up to $635 billion annually, according to a report released today by the Institute of Medicine of the National Academies.
The report, "Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research," says the nation's health care system has largely failed Americans in pain and calls for a "cultural transformation" of the way in which the United States approaches and manages patients with pain.
Mandated by Congress in the 2010 Patient Protection and Affordable Care Act, the study offers a six-step plan to begin next year.
"A third of the nation experiences chronic pain. ... It's more than we pay as a nation on cardiovascular disease and cancer," said committee chair Dr. Philip A. Pizzo, dean of pediatrics and of microbiology and immunology at Stanford University School of Medicine.
He said the prevention and treatment of pain are too often "delayed, inaccessible, or inadequate," especially among certain demographic groups; racial and ethnic minorities, women, children, those with lower levels of income and education, veterans, the elderly, cancer patients and those at the end of life.
The report also acknowledges that pain is experienced individually and is more than just a physical symptom and is not always resolved by curing the underlying disease.
"If you talk to women, they tell you no one is listening, they tell them they are faking," he said. "One of the conclusions of the report is that chronic pain is not in your head. It's a disease in its own right."
Successful treatment, management and prevention of pain requires an integrated, approach that responds to all the factors that influence pain, the committee concluded.
It also called for a the National Institutes of Heath to create a large population-based public health strategy to death with pain management, including better education for heathcare providers.
Many professionals are not trained to provide pain care or to guide their patients in managing it. The report cites a recent study found that only five of the nation's 133 medical schools require courses on pain and 17 offer elective courses.
"To be blunt, doctors need to develop some skills they lost along the way," Pizzo said. "They need the ability to listen and to be more compassionate and to spend more time with the patients."
The current payer system also doesn't pay for multiple visits or prescribing effective remedies such as physical therapy, he said. "They are more likely to pay for a procedure," he added.
Patients in Pain Are Misdiagnosed and Ignored
Patients report that their doctors often dismiss their pain and send them away without providing any other options.
Such was the case with Mindy Meyer, now a 45-year-old from Venice Beach, Calif, who works as a college facilitator. She saw 13 doctors before she was diagnosed with CRPS and fibromyalgia.
While organizing a conference in 2003, she pushed open a heavy door and heard a "pop" in her shoulder. The excruciating pain went on for months, depriving her of the sleep she needed to get better.
"In the beginning, it's really hard not to have the cooperation from the medical community," she said. "When you have doctors who provide a lot of resistance and who don't understand what's going on, it's really tough."
Although Meyer has since improved through spinal injections, medications and "internal coaching," she pays attention to her stress levels and is only able to work 20 hours a week.
"Society is really trained to deal with things that have a beginning and an end," she said. "Either you get better or you are supposed to die. You are not supposed to have something that goes on and on, like chronic pain."
Meyer eventually found support through an organization founded in 2002 by Toussaint. The nonprofit was named for her aunt, who died in pain at the age of 20.
The IOM report backs up research that women are more likely to suffer chronic pain than men and it comes with greater frequency and intensity.
"Women hurt more and are helped less," Toussaint said. "We feel our pain at a lower threshold. But we are told it's in our heads."
The report also urges the National Institutes of Health to spearhead a coordinated plan to address pain management. Materials should be developed to explain the nature of pain and offer self-help strategies to cope and treatments that can be effective.
Toussaint's own remission began when she switched to integrative medicine, using a variety of techniques, including yoga, acupuncture as well as mindful meditation.
She declined offers from conventional doctors to place a morphine pump in her spine. Now, she works with her doctor "as a team." He listens and then asks her, "What do you think we should do?"
"You are your best advocate," she said. "You are the expert because you inhabit your own body."
Toussaint also founded the annual Women in Pain conference, which will be held for the fourth year on Sept. 16 in Los Angeles. This year's theme is, "Reframe Your Pain, Reclaim Your Life."
For Toussaint, healing came slowly. She still has pain, but most of the time it's at a level of 3 out of 10 and not the debilitating pain she said she felt for the past 25 years.
Now, she has resumed a singing career and can swim a mile and do pilates.
"I accepted that I lost the career I lived for," Toussaint said. "But now, I am getting that career back. I never expected that. I finally made peace and made friends with my pain."
Calling the IOM report a "giant step forward," Toussaint said she is excited that pain as disease will be placed "front and center."
"It digs pain out of the dark ages," she said. "Pain has been overlooked for far too long, and due to lack of awareness and education, many soul and body crushing stigmas, biases, pre-conceptions and misunderstanding pervade across demographic and cultural lines, in particular underserved groups like women challenged by persistent pain."
Toussaint is convinced that techniques that are complementary to medicine will give those in pain "self-empowerment."
"Pain patients will learn that there aren't just pills and devices that can control their pain," she said. "There's a whole range of under-appreciated non-traditional treatment options that are low-cost, effective and with no side effects.
Learn more information on Women in Pain conference.