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.