For many, chronic pain leads to endless loop of doctors, drugs and desperation

Posted April 18, 2013, at 10:08 a.m.
A painting by Texas artist Karen Musick that depicts her experience with Central Pain Syndrome, a neurological condition that results in constant pain. Musick participated in the University of New England's April 4, 2013, symposium on chronic pain.
A painting by Texas artist Karen Musick that depicts her experience with Central Pain Syndrome, a neurological condition that results in constant pain. Musick participated in the University of New England's April 4, 2013, symposium on chronic pain.

What to do if you’re in pain

If you’re experiencing short, acute bouts of pain, follow basic first aid measures for 24-36 hours. That includes use of NSAID pain relievers, such as Tylenol or ibuprofen, and RICE — rest, ice, compression and elevation for minor sprains and injuries.

If pain does not lessen or gets significantly worse, head to your local emergency room. If pain continues for more than three days, to the point where sleep, mood or activities are interrupted, schedule a visit with your general practitioner for a referral to a nearby pain clinic. Maine Medical Center and Mercy Hospital in Portland both have departments devoted exclusively to the treatment of pain. Early intervention is key.

If possible, do not curtail physical movement after the first 24 hours. According to Kathleen Sluka, a top researcher in the field of pain relief at the University of Iowa, moderate physical activity is one of the best ways to short-circuit the brain from transitioning into a chronic pain loop. Twenty to 30 minutes of moderate exercise every other day is enough to keep the pain chain at bay. If this feels too challenging, get a referral from your doctor to visit with a physical therapist who can guide you through safe and effective movements.

Quickly, fill in the following blank: “Ow, my aching [blank]!”

For a growing number of people, the answer is automatic. Maybe it’s an old sport injury, a flare-up of nagging back pain, a headache, knee sprain or an arthritic shoulder.

More than 100 million people in the United States and 1.5 billion people worldwide are in persistent chronic pain, according to the U.S. Committee on Advancing Pain Care, Research and Education at the Institute of Medicine, which published an extensive report of their findings to Congress in 2011. Life for them is an agonizing experience complicated by factors such as depression and anxiety that costs the economy $600 billion per year in lost wages, productivity and hospital care.

In Maine, the costs are compounded by a high percentage of the population addicted to painkillers, a class of prescription drugs classified as opioids. In 2012, more than 37 percent of the patients admitted to the state’s hospitals for drug abuse treatment were addicted to prescription painkillers, three times more than were admitted for heroin, at a cost of approximately $400 million, according to an annual report by the Department of Health and Human Services’ Office of Substance Abuse.

Short bouts of acute pain are a universal part of life. Pain keeps us from repeating life-threatening or harmful behavior. The process appears simple enough, but on a molecular level, pain is actually very complicated and occurs across separate centers of the brain, including sensory, emotional and cognitive. These centers overlap and communicate with one another, but each requires a different mechanism to normalize once the crisis has passed. Chronic pain occurs when that communication gets fuzzy, and the brain cannot return to normal functioning. If pain persists for more than three months, it can take on a life of its own, changing brain chemistry to the point where the brain may begin to read any stimuli as pain-inducing, even if it isn’t.

For some sufferers of fibromyalgia or Complex Regional Pain Syndrome, something as minor as a drop in air temperature can hit them like a hammer. For them, pain is like a broken car alarm that never stops blaring, robbing them of peace and rest even when the original injury has long since healed.

Paula Orecklin, 25, of Winnipeg, Canada, has suffered with Complex Regional Pain Syndrome since age 13, when a twisted ankle quickly devolved into a nightmare of agony and revolving doctor’s offices.

“For me, on some days, even a dog hair on my leg can set off excruciating spasms,” she recently told an audience at the University of New England’s April 4 symposium on chronic pain in Biddeford. “On my good days, I experience a pain level of 5.5 out of 10, and that’s with medication. Everything affects my pain and my pain impacts everything else: my memory, my intellect, my ability to communicate. At my age, choosing to treat my pain over my education has been devastating and I’ve had to spend a lot of time convincing heath care practitioners that I’m not a difficult person, I’m a person with a difficult disease.”

Chronic pain sufferers are often categorized by caregivers as complainers and psychosomatics for the simple fact that they don’t get better. People like Orecklin are at their wits’ end.

“The most frustrating thing I have to deal with is that I feel like I’ve come to the end of medical options for CRPS,” she said.

Most people in persistent pain find themselves tramping from doctor to doctor in an ongoing quest for relief. They experiment with an increasingly wide array of alternative and physical therapies and are prescribed a spectrum of addictive pain medication then, often, surgery, all the while growing progressively more desperate as the pain continues and sometimes worsens.

“It’s a national disaster,” said Dr. David Borsoock, director of the P.A.I.N. Group at Boston Children’s Hospital and the Center for Pain and the Brain at Harvard Medical School.

Borsoock is recognized as a leader in the fight to understand the origins of pain to find better treatment.

“Chronic pain is a complex experience that integrates emotional and sensory experience and demands multiple treatments, but right now we still don’t have an objective way to measure it and because we can’t measure it, we don’t understand it,” he said. “Clinicians and patients are forced on this merry-go-round of trying things that have no real proof of efficacy or are complicated in their long-term application, such as opioids. Soon, the situation evolves into a frightened group of people willing to do anything and a clinical group trying to do their best without the right tools.”

The right tools are the holy grail of pain management, but remarkably elusive. According to Borsoock, finding a biomarker (such as a genetic predilection) to identify individuals most likely to transition from bouts of regular pain to chronic pain would revolutionize doctors’ ability to make diagnoses.

Researchers are now working toward better pain education and research across all of the health care disciplines, a course that, with the help of the National Institutes of Health, is being charted by the University of New England. Last year, UNE was awarded the largest research award in its history: a $10 million award from the NIH to fund the UNE Center of Biomedical Research Excellence for the Study of Pain and Sensory Function. UNE collaborated with a number of local and national groups to bring experts in the field of pain research and management together with students, patients and practitioners, as well as other members of the community, for its symposium at the Harold J. Alfond Center.

Ed Bilsky, director of the Center for Excellence in the Neurosciences at UNE, described the symposium as only part of what UNE is doing to transform the nature of pain treatment education.

“We have created much of the content needed to highlight chronic pain as one of the most serious health issues facing the country,” he said. “With fresh perspectives I think we are making huge progress in better educating future health professionals as well as making positive impacts on the communities we live in, and the state of Maine.”

Orecklin, who was a panelist at UNE’s symposium, is anxious for this new approach to work. She has a life to get back to, and the sooner she can do it, the better, she said.

Genevieve Morgan is a freelance health and wellness writer and editor from Portland.

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