October 24, 2003
Chronic pain sufferer links recovery to empathy, expertise of medical team
By Susan Christensen
Health and Research News Service
JACKSON, Miss.—On the good days, Tom Burnley’s pain is like the sound of a radio playing in the distance, a disquieting presence perched just on the edge of his consciousness.
On the bad days, it’s like a marching band headed straight at him, big and imposing and impossible to ignore.
Burnley suffers from chronic pain, a condition that afflicts an estimated 90 million Americans and costs the nation more than $125 billion annually in health care costs, disability compensation, lost productivity and tax revenue.
Today, Burnley says he enjoys more good days than bad, due in large part to the compassionate care he has received from the pain management team at Methodist Rehabilitation Center in Jackson. “I can’t think of one time that I wasn’t treated the best way I could have been at the time,” he said.
But like many who share his affliction, Burnley says he went down more than one blind alley in search of relief. Before coming to Methodist, no one seemed to understand the depth of his despair.
“I was treated like I was crazy and was trying to ride the Workers’ Compensation system,” said Burnley, a former intensive care nurse. “I was almost believing I was crazy I was being treated so badly.”
Burnley’s experience is not unique, said Southern Pain Society president Angela Koestler, a psychologist for Methodist’s pain management team and co-author of “Understanding Chronic Pain.”
“In the past, physicians associated pain with tissue damage. Patients who complained of pain after they were supposedly healed were thought to be neurotic or hysterical,” she said. “It has only been in the last two decades that chronic pain has been considered a condition in itself that calls for specific treatments and interventions.”
Koestler said pain is considered chronic when it lasts six months or longer or when it persists a month beyond the usual course of an acute disease or the reasonable time for an injury to heal.
A wide variety of ailments are associated with chronic pain, from arthritis, fibromyalgia and nerve damage to migraines, sickle cell disease and spinal problems. But for many pain sufferers, the underlying cause is unknown.
In either case, the issue is not so much the source of chronic pain as the effect. “Pain is no longer the symptom, pain is the problem,” said Koestler. “It interferes with functioning and the patient’s quality of life.”
Burnley’s misery began the day he suffered a freak accident at his new job as director of nursing care at a nursing home. “I was moving a filing cabinet and damaged both ends of my spine,” he said.
What followed was a scenario familiar to many chronic pain sufferers. Burnley was shuffled from doctor to doctor and none seemed to understand his distress.
Burnley’s troubles were initially attributed to a low-back injury – which is among the most common causes of hospital admission. But a visit to Dr. Michael Winkelmann, a rehabilitation physician at Methodist, confirmed Burnley’s suspicion that his pain had another source.
“His previous evaluations were not general enough because they focused on the low back injury,” Dr. Winkelmann said. “I did a broader screen and physical exam and discovered he had cervical myelopathy, which is compression of the spinal cord in the neck.”
While it wasn’t good news, Burnley said he was glad that someone finally put a name to his problem. “I was treated as if something was truly wrong with me. People were asking what can we do to fix it?”
In the treatment of chronic pain, that is seldom an easily answered question. But since patients often must deal with physiological, psychological and social factors, Dr. Winkelmann said a multi-disciplinary approach works best. At Methodist for instance, rehabilitation physicians lead a pain management team that includes anesthesiologists, psychologists and physical, occupational and recreation therapists.
The team’s first goal is to diagnose the root cause of a patient’s pain, Dr. Winkelmann said. The detective work begins with a thorough physical examination that may be followed by a variety of diagnostic procedures, such as x-rays, CAT scans, MRIs, electromyograms and nerve conduction studies. Additional testing may involve assessments by occupational and physical therapists and a psychologist.
After Burnley’s initial diagnosis, the team moved on to helping him regain function. When two surgeries didn’t restore his fine motor skills, balance or the use of his right leg and foot, Burnley began learning to adapt to his limitations. Methodist staff taught him to how to exercise, to use crutches and a wheelchair, to dress himself and to drive with hand controls. He also underwent a series of spinal injections that offered some pain relief.
While his physical needs were being addressed, Burnley also got some much-needed counseling to address a common companion to chronic pain – depression.
“I’d say 95 percent of patients who have chronic pain have some level of depression,” Koestler said. “Many patients with chronic pain feel they have lost everything important to them.”
Some are hit particularly hard when they can’t go back to work. “In the United States, people identify with their jobs,” Winkelmann said. “So in addition to their pain, patients are dealing with sociological problems related to the loss of their income and their lifestyle as they knew it.”
Burnley was no exception. The self-confessed “Type A personality” said going from caregiver to care receiver wreaked havoc on his self-image.
“It was like someone had thrown the brakes on,” he said. “I felt fragile and worthless, like my ability to help anybody was gone. I felt ready for the junkyard.”
He said that perception changed after he began taking anti-depressants and started attending group therapy with other chronic pain patients. “I found in group therapy the thing you are supposed to find – that you are not alone in your suffering,” he said.
He also discovered a vital tenet of pain management – when you can’t change a situation, you have to change yourself. “I’ve learned to be more realistic in my expectations of myself,” he said. “I have to take things at a pace I can comfortably tolerate to achieve my goals.”
Koestler said just as chronic pain patients learn to temper their expectations, so must the health professionals who provide their care. “We’ve had to change our emphasis from finding a cure to rehabilitation,” she said. “Now we look for ways to minimize the negative effects of the pain.”
Koestler said those strategies include medications, nerve blocks and injections, physical or occupational therapy, rehabilitative exercises, electrical stimulation of muscles, implantable devices, and cognitive and behavioral strategies, such as relaxation and biofeedback.
Education is key, too, she said, because patients must understand that they play a critical role in their own recovery.
“Although there is no cure for chronic pain, patients can learn cognitive and behavioral strategies to improve their quality of life,” she said. “For instance, I had one patient who was really depressed because she felt she couldn’t go watch her sons play baseball. Sitting in the bleachers caused her too much pain. But we did some problem solving in group therapy, and figured out how she could go. The solution was to carry her own chair and a lumbar pillow, to take ibuprofen before and after the game, and to take a hot shower, then use ice on her back. It was the first time I saw her smile in group.”
Burnley said his big turning point came when he discovered he could still participate in sports like hockey and water skiing. “I owe a lifetime of gratitude to Methodist Rehab and Ginny Boydston, director of of the hospital’s therapeutic recreation program,” he said. “So many of their sports programs have strengthened my mind and body and made me more fit so I can try to make a difference.”
Through counseling with Koestler, Burnley said he also began to see the possibility of a new beginning. “Through telling me over and over, she did convince me that that even though I couldn’t stand on my feet and move around, I still had a lot to offer and could contribute in a different way. Now I’m working on a master’s degree in nursing education.”
And you can bet when Burnley finally gets in front of a classroom, one topic of instruction will be how to treat people with chronic pain. “It still really bothers me the way I was treated in the beginning,” he said. “I’m fully aware of the abuse that goes on with Workers’ Compensation. But that’s not everybody. Just because someone is not coming in teary-eyed doesn’t mean they’re not hurting.”
Tom Burnley, a member of Methodist Rehabilitation Center's sled hockey team, credits the hospital's therapeutic recreation program with giving him the strength to make a difference.