Shelley Latin’s odyssey with chronic pain and opioids began innocuously enough in June 2011, when she awoke with a stomachache. It took a year for the cause to be correctly diagnosed—a bacterial infection in her gut—and arrested with antibiotics, but by then the pain had taken on a life of its own, no longer linked to the infection. “I couldn’t drive, or walk, or sit. I could only lie in bed on my back,” she recalls.
Over the next five years Latin, a legal aid lawyer in Oregon, found herself taking ever higher, doctor-prescribed doses of hydrocodone to manage her misery. It was disastrous. She could not focus, she felt crushing fatigue and, inexplicably, she says, “I cried constantly.” Worse, her entire abdomen became so hypersensitive that just wearing clothes was painful. This was likely caused in part by a paradoxical side effect of the painkillers known as opioid-induced hyperalgesia.
By last year, Latin had had enough. She enrolled for a week at Stanford University’s Comprehensive Interdisciplinary Pain Program, where she worked with doctors to taper her meds, occupational and physical therapists to get moving again, and psychologists to work on her pain-related anxiety and catastrophizing. Now Latin is off opioids and handles her pain with meditation, exercise, psychological counseling and nonopioid nerve pain drugs.
Alas, few of the 10 million or so Americans taking opioids long term for chronic pain have access to such a stellar program. Around the country, state and federal authorities and insurance companies are cracking down on opioid prescriptions in the wake of a 345 percent spike in opioid-related deaths between 2001 and 2016. In some states, legislatures have restricted what doctors can readily prescribe. As a result, many patients are being forced to reduce their drug use without the support to do it safely and effectively. “If somebody is on opioids at high doses for many years, it takes time and work to help them come down from those doses. How any politician thinks they know the answer to this in a one-size-fits-all solution beats me,” says opioid researcher Erin Krebs of the Minneapolis Veterans Affairs Health Care System.
In fact, there’s very little research on how best to taper opioids for chronic pain patients. For example, although studies show that drugs such as buprenorphine can help addicts recover, little is known about their value in the context of chronic pain. Last year Krebs and her colleagues published a review paper that examined 67 studies on tapering opioids for pain patients and found only three to be of high quality and 13 to be “fair.” The good news, Krebs says, “was that as you reduce dosages, most people do better” in terms of pain and quality of life. The challenging news is that the better studies emphasized multidisciplinary care and very close patient follow-up—labor-intensive methods that are not widely available in the U.S. and rarely covered by insurance.
One thing seems clear from research and clinical experience: reckless restriction is not the right response to reckless prescribing. “Forced tapers can destabilize patients,” says Stefan Kertesz, an addiction expert at the University of Alabama at Birmingham School of Medicine. Worried clinicians such as Kertesz report growing anecdotal evidence of patient distress and even suicide.
The brightest rays of light in this dark picture come from a burst of new research. In May a team led by Stanford pain psychologist Beth Darnall published the results of a pilot study with 68 chronic pain patients. In four months, the 51 participants who completed the study cut their opioid dosages nearly in half without increased pain. There were no fancy clinics, just an attentive community doctor and a self-help guide written by Darnall. A key element was very slow dose reduction during the first month. “It allows patients to relax into the process and gain a sense of trust with their doctor and with themselves that they can do this,” Darnall says. She is now recruiting 1,300 patients for a multicenter study of this method that will also assess the value of adding behavioral support such as cognitive-behavioral therapy.
Other big studies are also getting under way. One headed by Krebs will compare a pharmacist-led program to modify drug regimens with one in which a medical and mental health team helps patients decrease opioid use in the context of setting personal goals. Given the high level of fear that most patients feel about making changes, it’s a safe bet that any successful program will be long on patience and compassion.