Chronic Pain and Fibromyalgia: Trapped In A World Of Hurt
March 8, 2004
50 Million Americans Have Chronic Pain, And So Far Doctors Can't Offer Much Relief
By William Hathaway, Courant Staff Writer
Chronic pain is the Achilles' heel of modern medicine, which far too often fails to find a root cause of suffering or to offer effective treatments for the estimated 50 million Americans who suffer pain on a daily basis. That number is expected to surge as the population ages and becomes more susceptible to conditions such as lower back pain, arthritis and cancer.
Medical schools do little to teach doctors how to deal with patients in chronic pain, which has become a fiscal black hole that swallows tens of billions of dollars annually in lost wages and in treatments, many of them fruitless.
Chronic pain, the afflicted say, is a voracious thief. It robs people of focus, ambition, desire and sometimes the will to live. By some estimates, about half of all those who experience chronic pain also suffer from depression. The best that science can offer for many is to manage their pain, or push it temporarily into the corner like an unruly child. They are prisoners in a world of hurt.
Pain is the oldest medical condition known to man, a primal and lifesaving response to environmental insult. But for contemporary medical science, it largely remains terra incognita.
"Pain is a still relatively unresearched topic. It has not historically been a high priority," said Dr. Bob Kerns, an associate professor in the departments of psychiatry, neurology and psychology at Yale University and an expert on chronic pain. "People don't die of it, and it has been treated as a symptom as opposed to a disease. It affects all areas of medicine, so nobody owns it."
Acute but temporary pain caused by a broken leg, for example, requires little study. But people with that sort of pain are a minority of pain patients. Two out of every three pain patients suffer for months or even years. Fifty-seven percent of people interviewed in a Research!America poll said they suffered chronic or persistent pain in the past year. About two out of every five chronic pain sufferers had to make a major change because of their condition - switch jobs, take disability leave, move into more accommodating housing or get help with basic life chores like bathing and dressing.
Pain is also a relentless taskmaster that demands constant consultation before even the most mundane activities are attempted.
"It was a veil that surrounded me," said James Trudel of Bristol, who injured his back in a work accident. "Every moment is pain. You have to decide whether putting your leg into a pair of pants is worth it. Pain is a parasite and you have to feed it."
For many conditions, doctors can't always tell patients what is causing their misery.
Endometriosis, a common cause of pelvic pain in women of childbearing age, often goes undiagnosed. Persistent migraine headaches, fibromyalgia or neuropathy - the torture of damaged nerves - are just some of the conditions that leave few tracks for doctors to trace. About 80 percent of lower back pain cases are diagnosed as "nonspecific" - meaning they have no readily apparent physical cause. An Indiana University study found that when patients complain of pain, their doctors identify a cause only about 40 percent of the time.
Doctors also have no good tools to quantify physical suffering - the way a blood test might assess the severity of an infection or an MRI might reveal a muscle tear.
"The fact of the matter is that pain is subjective," said Kerns, the Yale pain expert. "Everybody knows what pain is; nobody knows how to measure it."
The American Medical Association only about three years ago provided doctors a standardized test to assess pain levels. It is no more sophisticated than a questionnaire that asks patients to rate their pain on a scale of 1 to 10.
Chasing The Invisible
Pain's invisibility not only makes it difficult to study, diagnose and measure - it also can lead medical professionals to doubt its existence. The amorphous nature of pain often is used as a pretext by the emotionally needy to seek comfort and attention. The unscrupulous exploit it to avoid work or hazardous duty and to press frivolous lawsuits or phony workers' compensation claims.
In many cases - more often with female or minority patients, studies show - doctors suggest that the pain "is all in your mind." For patients whose chronic pain is genuine, that doubt can add insult to injury.
"Chronic pain patients say their No. 1 challenge is a lack of validation - by employers, significant others, by health care providers," said Mary Pat Aardrup, executive director of the National Pain Foundation. "You don't have a bandage. You don't have a crutch."
Jan Looft, 60, a North Haven nurse who works for an insurance company investigating medical insurance claims, has seen both frauds and genuine cases. Five years ago she became a pain patient herself.
Looft was practicing as a nurse in San Francisco in 1997 when she was diagnosed with hepatitis C. Two years later, she began to feel aches and severe fatigue over many parts of her body - pain she initially attributed to the unpleasant side effects of the ribovarin and interferon used to treat the disease.
It was, she said, the type of pain one gets the day after the first strenuous workout following a long layoff. "You know how they say everything hurts but your hair?" Looft said. "Well, my hair hurt, too."
The pain didn't end with her hepatitis C treatments. The steep hills of San Francisco that never before had posed an obstacle on energetic hikes seemed like the Himalayas. "I was annoyed I couldn't lick this," she said.
She went to see a primary care doctor, a neurologist, a rheumatologist and a gastroenterologist who took out her gallbladder thinking it might help. Nothing did. No one could tell her what was wrong.
Looft said she saw so many doctors that she became expert at spotting that deer-in-the-headlights look in their eyes. "I could see the look on their faces," she said. "It was, `Oh my God, let me get her out of here. I don't know how to treat you.'"
Pain In The Mind
If chronic pain patients who seek help feel as if they are lost in some vast medical desert, doctors of chronic pain patients feel like the host with a guest who never leaves.
"They are the high utilizers, the frustrating patients who make multiple phone calls and ask for referrals to multiple specialists," said Dr. Michael Clark, associate professor and director of chronic pain treatment programs at the Johns Hopkins Medical Institutions. "Your goal is to hopefully get them well so they spend less time with you."
A doctor's frustrations sometimes morph into suspicion that the pain exists solely in the patient's mind.
"Most practitioners see it as an either-or situation," Clark said. "If I can't find anything wrong, they think, it must be psychiatric."
In a biochemical sense, those doctors are correct - the pain does exist in the mind. But, said Clark, not in the way patients, or even most doctors, understand.
There is a very good chance a chronic pain patient is depressed, he said. Studies have shown that about three of four people with major depression suffer from some form of chronic pain - and that chronic pain sufferers are more susceptible to depression than people who aren't in pain.
"But the truth of the matter is that there are also a lot of people walking around carrying the burden of illness who are not depressed," Clark said.
Which comes first, the pain or the depression, currently is a topic of great academic debate, Clark said. But he called the question "a distraction."
Scientists know that pain is processed by the same biochemical pathways implicated in depression. That is why many people in chronic pain who aren't depressed are treated with antidepressants.
Too often, doctors fail to look for depression in their pain patients, Clark said. And conversely, pain patients are often reluctant to accept a diagnosis of depression.
"It's an insidious process, but it is not really a dichotomy," Clark said. "If you have AIDS and also have pneumonia and a blood infection, you'd treat the pneumonia and the blood infection, too."
In the early 1970s, doctors persuaded Emil Albert to try to attack his pain at its roots - in his mind.
The goal of the experimental procedure known as neurostimulation was to send signals to his brain via wires attached to two power packs surgically embedded within the walls of the chest.
The electrical signals are designed to cancel out pain signals, which in Albert's case doctors believed came from lesions in his central nervous system caused by multiple sclerosis.
The procedure works in the same way that rubbing a bumped shin or elbow relieves pain. One set of nerves carries "fast" pain signals during the initial injury, while a second set of nerves sends "slow" signals of continuous or chronic pain. Rubbing and electrical signals essentially out-race the slower pain signals into the brain.
Neurostimulation is still in use today but was a primitive process when Albert had the operation. The two medallion-size power discs had to be replaced every three or four years - ripped from the scar tissue that encased them.
The procedure did provide some relief for his pain and Albert had the discs replaced once, but doctors advised him not to do so again. Doctors at the time of the operation also suggested that the pain in his leg might not have been caused by multiple sclerosis at all but by diabetic neuropathy - nerve damage that is notoriously difficult to treat.
But by then, Albert had found another treatment that finally dulled the sharp edges of his pain. He had come to count on the comfort of morphine.
But effective treatment is something chronic pain patients often fail to find. And the type of help offered varies greatly by the type of specialist they see.
There is no "book" on different types of pain because medical schools tend to ignore pain management in their curriculum, pain advocates say.
"It's absolutely appalling," said Aardrup, of the pain foundation. "Chronic pain is the most significant public health problem we have and [chronic pain patients are] one of the most under-treated populations."
Pain advocacy groups have had success recently calling attention to the problem of chronic pain, most notably getting Congress to designate this decade as the Decade of Pain Control and Research. Lawmakers also are considering a pain bill that would establish regional pain centers and increase funding for pain research.
"This is the first measure that recognizes pain as a condition unto itself, rather than a complication of a particular disease," said Chuck Weber, spokesman for the American Pain Society.
Education for patients is also crucial if they are to make sense of often confusing and contradictory approaches to pain treatment, Aardrup said.
The National Pain Foundation outlines what it calls a continuum of care for chronic pain patients. First attempts at treatments involve therapies such as over-the-counter pain medication, physical therapy and exercise. A patient then would graduate to more sophisticated nerve blocks or more potent pain medications and progress to more dramatic procedures, such as major surgery or implantable drug pumps.
While doctors may not be able to eliminate pain, experts say it is possible to reduce it.
Exercise is increasingly recognized as a key component of pain management. Besides improving overall health, exercise also produces endorphins, or neurotransmitters that are effective natural painkillers. The problem is that many chronic pain patients fall into a Catch-22: They hurt so much they don't exercise and, as a result, they wind up hurting more.
Jan Looft tried many therapies that have been shown to be beneficial for some pain patients, including meditation, yoga and acupuncture. Nothing worked. She had pain in her neck and both shoulders. Her lower back and right buttock hurt, as did the right side of her abdomen. Sitting at a desk was agony, she said. "I felt like I was turning to a stone."
But she found some psychological relief when she moved to Connecticut to be near her children and a doctor told her that she had fibromyalgia, a disease characterized by fatigue and pain over many parts of the body.
"I felt relieved that somebody finally gave it a name," she said. "Up until then, I'd see the look on people's faces - if I couldn't give it a name, it couldn't be a problem."
Treating Bits And Pieces
But it wasn't until Looft saw a doctor who doesn't believe she has fibromyalgia that she started to feel some physical relief.
Dr. Jonathan Kost, the director the Connecticut Spine and Pain Center at Bristol Hospital, listened carefully to her story and began to treat each one of her problems as an individual malady. He prescribed a low-dose antidepressant for her sleeplessness. He injected anti-inflammatory medication in swollen joints. He used electrical stimulators on tightened muscles and skin patches containing pain medication for other sore spots.
Looft began to feel relief from some of her symptoms. For now, she said, that is enough. "What you want to do is to be able to push the pain down to the level below your consciousness," she said. Looft's response to those individualized treatments argues against a diagnosis of fibromyalgia, Kost said.
"She wouldn't be getting relief from individual treatments if she had true fibromyalgia," he said, terming fibromyalgia "a garbage can diagnosis," a place for cases that don't fit into neatly defined medical cubbyholes.
Kost suspects that Looft may suffer from a group of individual but unrelated maladies but said he doesn't really know and that he hasn't pushed his conclusions on her.
"It's extremely important to have a diagnosis, not only for people to feel validated but to be able to tell other people what their problem is," he said. "It's not my job to steal that from her. It's my job to make her better." As Kost puts it, pain relief "is all a matter of putting little pieces together."
That seems to be the emerging message from pain specialists. There may be no silver bullet, no magic medical wand to lift all the pain, but perhaps people who suffer can find some relief for some symptoms.
Emil Albert also saw Kost and had his pain relieved in bits and pieces. Nerve blocks help with his phantom limb pain. He has patches containing localized anesthetics that he places on areas of pain. For his diabetic neuropathy, he receives regular shots of methadone, an opioid that carries a low risk of psychological addiction and is used to help addicts withdraw from heroin.
Like Looft, Emil Albert has come to accept pain as a permanent guest that demands acknowledgement, but not obeisance. He wakes up, puts pain into its compartment and heads to work. "When I think about it, I feel I'm pretty lucky," Albert said. "I'm still here."
Note: This article has been edited for length.
Source: www.ctnow.com. Copyright © 2004 by The Hartford Courant.
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