By Lisa EspositoJuly 15, 2014 3:25 PM
Imagine gritting it out with sharp, throbbing pain from a migraine or back injury for just a few hours. Or doing your best to concentrate at work through the ache of an abscessed tooth.
Now, imagine coping with similar pain for years — and though it goes away at times, it’s never for long. Sadly, that’s the reality for millions of Americans. Chronic pain can take over a person’s life, but it doesn’t have to. Still, there’s no magic pill. Learning to manage pain is a process you go through and a decision you make.
Pain’s Wide Reach
Pain is invisible — others can’t see it or touch it. There isn’t a blood test that measures pain, or an X-ray that confirms its existence. It can be hard for people to get their pain taken seriously. But pain is a big problem. About 100 million U.S. adults are affected by chronic pain, and it costs up to $635 billion yearly in medical care and lost productivity, according to a 2011 Institute of Medicine report.
Backaches and headaches (especially migraines) are the most common pain culprits, but there are many others. Arthritis, injuries, pain from cancer or heart disease, genetic conditions like sickle cell disease, and surgical complications like severed nerves — any of these can result in pain that becomes a continual presence.
Here to Stay
For Penney Cowan, founder of the American Chronic Pain Association, the journey with pain began nearly 40 years ago. Fibromyalgia was the reason, but it took six years for doctors to properly diagnose it. Even today, the cause of fibromylagia is still unclear, but common symptoms include widespread muscle pain, fatigue and sleep problems. In Cowan’s case, pain affected nearly her entire body and worsened to the point that her quality of life was “down the tubes,” she says. “I couldn’t even hold a cup of coffee; it was too painful.” It became so bad, she says, that it consumed every waking thought and moment.
When does pain cross the line from temporary setback to lifelong condition? “If the pain’s been around for five years, the chances of having zero pain are probably pretty small,” says Robin Hamill-Ruth, an anesthesiologist, pain management specialist and president of the American Board of Pain Medicine. At that point, she says, pain management becomes the goal: “How do you get the pain to a level that it doesn’t control [patients’] lives — they control it?”
Mariann Farrell, 67, was a music educator in Philadelphia until two car collisions ended her career years ago. “Horrible” sciatica — pain from the sciatic nerve that travels from the lower back and down the legs — kept her bedridden for a year and a half, leaving her husband to cope with two kids, the household and everything else. “I got very depressed, helpless and hopeless,” she recalls.
At first, Farrell’s strategy was one that many patients fall into — doing less and less in an effort to avoid anything that might trigger pain. “I thought, if I can lie in bed and be very quiet and still, the pain would go away,” she says. But it only got worse. She says the impetus for getting out of bed came as she was crying alone while the rest of her family attended her son’s chorus recital. “I asked myself what I was doing,” she says. Farrell decided she might as well be watching her son in pain, rather than being bedridden in pain.
Chronic pain “is a loss of function; it’s a loss of self,” Hamill-Ruth says. Unlike acute pain, where the predominant emotion is anxiety, for people with chronic pain, it’s depression. “When people have lost function — they may have had a back operation — there are just things they can’t do,” she says. The resulting grief, she says, is no less than it would be for the loss of a limb. People like Farrell, who could no longer teach the music she loves, or a manual laborer who’s the family breadwinner but can no longer do physical work, have to find ways to “redefine” themselves, Hamill-Ruth says. “Once a person identifies how they can be a person who lives with chronic pain, and still have a quality of life and still be a person, they tend to do much better.”
No Easy Fixes
When pain begins, sufferers first try over-the-counter painkillers such as Tylenol and Advil, or simple home remedies. If those don’t help much, they may ask their physician for stronger prescription drugs to treat pain. These include opioid (narcotic) painkillers such as Vicodin or Oxycontin, certain types of antidepressant or anti-seizure medications, and corticosteroid injections. But people who expect chronic pain to disappear after swallowing a pill or putting on a patch are usually disappointed. “Pain medicine doesn’t take away the pain,” Farrell says of her own experience. “It mitigates it.”
With growing scrutiny as issues of opioid addiction, overdose and improper prescribing emerge, doctors are more reluctant to start patients on these painkillers. That may not be a bad thing, according to Hamill-Ruth. “Opiates aren’t very good, for all the noise they get,” she says. “They don’t work that well for a long period of time; they’re better for acute [than chronic] pain, but there are enough side effects and problems” to limit their usefulness.
Some patients go through increasingly invasive procedures to control pain. These could be nerve-block numbing injections or implanted devices to deliver anesthetics straight to the spine. And some people resort to surgery, such as spinal decompression or disc replacement for intractable back pain.
But when chronic pain withstands medical procedures and prescriptions, health providers may eventually say, “Just learn to live with it,” Cowan says. In response, she adds, the American Chronic Pain Association’s new catchphrase is “Don’t tell me to live with it. Teach me how to do it.”
If relief from a pill or procedure is often only partial — pain drops from a 10 to a 7 — people usually give up and move on to the next pill or procedure. But that’s not always the answer, Cowan says. Pain management involves finding a combination of methods that works for you. Medication-free options include physical reconditioning — physical therapy, stretching exercises and weight lifting — to mind-based treatments, such as cognitive behavioral therapy, biofeedback and hypnosis, and stress management techniques like meditation. The most effective techniques vary for each individual. With Farrell, for instance, music therapy is a must. For Cowan, it’s her morning stretching routine.
Weight loss is the most valuable modification for many chronic pain patients, according to Hamill-Ruth, because it relieves the burden of additional weight on the joints. Movement is essential for all patients, she says. “Staying active is just critical. If you don’t [move your body] it gets weak, and it’s a downward spiral of deconditioning, being more vulnerable to injury.” It helps to set achievable goals for yourself, she adds, even if it’s walking three minutes a day and next week bumping it up to four minutes.
Decades ago, the Cleveland Clinic rheumatologist who confirmed Cowan’s fibromyalgia told her she’d have to live with the pain. But he also referred her, with some skepticism, to an in-house pain specialist who could teach her how to live with it. Equally skeptical, she entered the program and with seven weeks of comprehensive pain management, she says, “I went from patient to person again.”
Thirty-five years later, pain management is an established medical subspecialty. But with only about 3,500 U.S. physicians board-certified in pain care, that means there are 28,000 people with chronic pain per specialist, according to the IOM. So primary care providers deliver the bulk of treatment for chronic pain. When it comes to finding a pain practitioner, some are more qualified than others, Ruth-Hamill says. “You can look up a pain doctor in the phone book and can’t tell whether they did a two-year pain fellowship or a weekend course.” Her group is pushing for stricter credentialing that requires a background in comprehensive pain management that includes familiarity with psychiatric and complementary medicine.
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Sharing Your Pain (Management)
Isolation is a hazard of chronic pain, Farrell says, making depression worse, and it’s crucial to interact with others in a similar situation. She recalls the moment she became aware that others shared her struggle, while attending her first support group meeting. “Having them understand me and my life, and I theirs, was of great emotional benefit,” she says. She didn’t have to explain her pain; they understood. She now facilitates a support group whose members listen daily to a music CD she put together.
When it comes to pain management, the focus is increasingly shifting toward the role of patients — with an emphasis on self-management and becoming an active part of the health care team. To further that team mentality, Cowan is currently traveling to Veterans Affairs hospitals and talking to patients and health providers about how to live with chronic pain and bridge the gap between the health care provider and the person with pain. For her part, Hamill-Ruth says pain management is a team sport, and patients are the key players. She describes a patient who did really well with self-management after turning her attitude around. “She said, ‘I finally figured out that this is my pain,'” Hamill-Ruth recalls, “‘and I’m going to have to own it if I want to get better.'”