The pain wasn’t acute or sharp, more a powerful, throbbing ache focused on the lower back. Ron Weaver was in his early 20s. He was a meat cutter, and at first he thought it was a typical problem for the trade—twisting, working in the cold, “lifting too heavy.” He tried muscle relaxants. He had physical therapy, massage therapy, and 222’s, a combination of codeine, caffeine, and aspirin, and went about his life.
Over time, it took longer to loosen up in the morning. The pain worsened at night. Things got downright scary when his heart swelled to twice its size. Doctors put him on a transplant list. Then, suddenly, his heart returned to normal and he went home. In 1995, after he moved to Coeur d’Alene, Idaho, his eye swelled to twice its size. It was iritis, requiring a steroid shot directly into the eyeball.
When he had his first 5-milligram dose of hydrocodone, the semi-synthetic opioid, it was a revelation. It wasn’t like he got buzzed. He just felt, well, normal.
“I felt like a regular human being again,” he says. “I took my first pill and I thought, ‘Man, I’ve got energy and I don’t hurt.’ And I went out and mowed the yard and I did this and I did that and it was like, this is a good day.”
After three years, he was up to 7.5-gram doses, then 10 grams. Finally, he was taking 360 pills a month along with morphine and fentanyl, a synthetic opioid more powerful than heroin, and running out two weeks early.
He was still in a great deal of pain. He woke up one morning throwing up and passing blood.
“And there was no way in the world I was going to tell my doctor,” he says, “because I knew he would take me off the opioids.”
It turns out that Weaver has ankylosing spondylitis, an inflammatory disease that attacks the spine and, occasionally, other parts of the body. It’s relatively rare, striking .1 to .2 percent of the population. But Weaver is in good company as a persistent sufferer of pain.
We are in a world of hurt. Nearly one in five American adults are in pain most every day for spells of three months or longer, according to an analysis published last fall by Jae Kennedy, professor of health policy and administration at Washington State University Spokane. Behind that figure are tens of millions of stories; 39 million people, more than the population of California, are affected. Pain is just the main character in their drama.
“The problem with being in pain all the time is you get other mental health problems,” says Tracy Skaer ’85, a professor of pharmacotherapy at WSU Spokane and a persistent pain sufferer herself. “It makes you depressed. It makes you anxious. You don’t sleep. And when you’re more depressed and more anxious and you don’t sleep and you start getting negative thoughts, your pain threshold drops”—she snaps her fingers—“and you actually experience more pain. So it’s a real vicious cycle.”
Then there are the drugs. The use of high-strength painkillers jumped dramatically in the past two decades, leading to an epidemic of addiction and tens of thousands of overdoses. Some are from illegal use. But as many as four out of five people who die of prescription opioid overdoses have a history of chronic pain.
The drugs have their place. Someone who breaks his hip should not have any concerns about taking an opiate to reduce acute pain, says John Roll ’96 PhD, WSU Spokane’s senior vice chancellor. “It’s a great medication to address acute pain,” he says. “All the focus on the chronic pain and addiction stigmatizes the use of opiates for anything.”
That said, there is what Roll calls a “sticky interface between persistent pain, addiction, and mental health concerns. Certainly not everyone who has pain falls into that category, but some small subset does. They use a lot of resources and they have pretty miserable lives that we might be able to help them reclaim.”
To that end, WSU Spokane researchers are exploring several ways to tackle various aspects of the problem. One project is aimed at helping rural residents obtain an alternative to methadone, blocking opiate cravings. Another steers pain patients from emergency rooms to more appropriate health care options. Others are trying to help people in pain cope without opiates.
“It’s not optional to feel pain,” says Roll, a central facilitator of WSU Spokane’s pain and addiction efforts. “We all feel pain. But I want to make sure that we have the best possible ways of dealing with it, for our families, for our society, for ourselves, so we’re not wasting lives. People in pain can be meaningful contributors to society.”
Jae Kennedy is explaining what he calls the “social history of the current opioid epidemic,” trying to name a year in which it started, and almost out of nowhere, he starts talking about his lower back.
He was at the University of California, Berkeley, in the early 1990s, finishing up his dissertation and under a lot of stress. He was also lifting a new baby, and his back went out. A doctor prescribed Vicodin, a brand of hydrocodone. He took the drug daily for more than two years, the prescription running without question from doctors or pharmacists.
“I don’t think I was physically addicted to it or even psychologically addicted, but I was taking a lot of it longer than I should have,” says Kennedy. “It was disrupting my sleep patterns and giving me rebound pain when I came off it. That’s the problem with these drugs, when they wear off the pain comes back and if you’ve altered your brain chemistry, you have heightened sensitivity to that pain.”
The pain was in many ways in his mind. Electrical signals from stimulated nerves were shooting up his spinal cord to the brain’s systems for pain perception and modulation. It’s an astoundingly complicated and effective system that has served animals well for hundreds of millions of years. Just not perfectly.
“Pain makes a lot of sense from just a basic organismic, evolutionary level,” says Kennedy. “If you touch a hot plate, you pull back quickly. That’s a natural survival instinct. It’s when you can’t pull back, you’re stuck there, that you start to really struggle with the psychological dimensions of that and the physical, ongoing stress of being in that situation. I wish you could just shut off the pain switch after you get the message. But the only thing we’ve found that does that is opioids, and they don’t work in the long term.”
In his case, the Vicodin managed to tinker with his body’s pain system enough to bring some relief, but not for long, and then it messed the system up.
“My back only got better when I stopped taking all the pills,” says Kennedy. “And that’s pretty common. If you talk to ten people on the street, you’ll hear that story at least once.”
Two of those ten people, if they match the calculations of Kennedy, Roll, and other WSU colleagues, would be in pain much of the time.
Kennedy’s study, part of a large Washington Life Sciences Discovery Fund grant and published in the Journal of Pain, was a collegial difference of opinion with a report put out by the national Institute of Medicine in 2011. That’s a high-powered crowd, the institute being one of the three arms of the National Academy of Sciences, the nation’s most selective scientific club—my term, not theirs. The institute’s report found nearly half of Americans suffer what it called chronic pain, creating a very large tent for those who would draw attention to the problem.
But in a way, it missed the heart of the problem, with a very broad definition of chronic pain that included arthritis, joint pain, moderate or severe pain in the past four weeks, and any work or housework disability. Not to slight the problems of anyone in that group, but to say half of the country is in pain, says Kennedy, makes the problem “so pervasive that it’s not something that we can address with social policy.”
He explains American sociologist C. Wright Mills’ distinction between social problems and personal troubles. “There are a lot of bad things that we just accept,” he says. “We don’t expect politicians to fix them.”
Death, for example, is a good deal more tragic and pervasive than persistent pain—mortality is still running at 100 percent—but it’s a problem that is so general that it is outside the realm of public policy. “It’s just a fact of life.”
Pain is a fact of life too, but it is something we can try to manage with appropriate health policies. Kennedy and other WSU researchers determined that 19 percent of American adults are in persistent pain—having daily or almost daily pain for the past three months—using survey data from the National Center for Health Statistics. They estimated that about 39 million adults are currently experiencing persistent pain. Within this group, two-thirds said the pain is “constantly present”; half said it is sometimes “unbearable and excruciating.”
Pain is subjective, so it can be hard to measure. But it has a huge impact on people in the persistent pain group. It affects work, family, and social lives. It brings a higher risk of mental illness and addiction. The size and the severity of its problem is clear and requires the full attention of policymakers and health care providers. And, says Kennedy, just prescribing narcotics “can and does make things worse.”
Which brings us to the current opioid epidemic. It’s a rainy, early-winter day and Kennedy sits at a conference table, backlit by a window overlooking the Spokane River. While he talks, he works on a pile of monochrome pieces for a 1,000-piece jigsaw puzzle of Big Ben. In a benign, non-narcotic way, it’s a powerful relaxant.
Part of our social history, he says, is “the development and aggressive marketing of synthetic opioids.” At the same time, there’s a growing problem in the health system: doctors swamped with patients wanting a quick solution. Often, there’s not enough time to address prevention and root issues, so it’s easier to just write a prescription for pain meds.
“For a lot of years, primary care physicians didn’t realize the long-term consequences of that,” Kennedy says. “As physicians have less and less time to see patients and patients had more and more expectations of getting a drug to solve their problem, those two combined led to aggressive over-prescribing of opioids and particularly synthetic opioids.”
Health systems and insurers need to realize that the population of people in persistent pain is at a higher risk of developing “substance abuse disorder,” says Kennedy.
“The fact that we’ve got such a highly prevalent risk factor in the adult population means that we need to look at this as a public health problem rather than some sort of private moral failing,” he says. “We’re talking about a lot of people and they’re not bad people. They’re trying to manage their pain and some of them treat it with drugs that they were prescribed, but the drugs become part of the problem rather than part of the solution.”
The health care community needs to look at long-term pain management strategies, including physical, occupational, behavioral and alternative therapies, he says, which could ultimately cost everyone less money and help patients cope better with their pain.
In pain and puking blood, Ron Weaver realized there wasn’t much point in worrying that his doctor might cut off his hydrocodone.
“I was dying anyways,” he says.
He got to the hospital and proceeded to go through one of the most severe opioid withdrawals the staff had seen in some time. He couldn’t walk, falling on his face in an early attempt, and he had nurses minding him for five days, 24 hours a day. Medical professionals were a great help in getting him detoxed, less so in dealing with the homecoming embrace of pain.
“The only thing they know how to do is treat you like an addict, which you’re not,” he says. “It’s a completely different animal. Are you addicted? Yeah, you’re physically dependent but it’s a completely different road in and it’s a completely different road out. That’s where I find myself now, doing what I do.”
He is not alone. His near-death experience, while perhaps not in the category of an overdose, was all too common. In just one year, 2010, opioids were involved in the deaths of more than 16,000 people nationwide, according to the Centers for Disease Control. No other class of drug, legal or illegal, was as fatal, and most of those deaths were from legitimate prescriptions. In Washington state, overdoses from prescription pain medication increased 17 fold between 1995 and 2008, according to a WSU funding proposal.
Several efforts out of WSU Spokane are attempting to address the problem.
The Behavioral Health Collaborative in Rural American Indian Communities focuses on a number of issues, including the combined misuse of alcohol and prescription opiates on rural Indian reservations. The program uses behavior modification in trying to replace drugs with other sources of reinforcement like work, friends, and leisure and family activities, says Roll.
The Rural Opiate Addiction Management Collaborative, also known as Project ROAM, has trained more than 100 health care providers in the use of buprenorphine. The drug reduces opioid cravings and is an alternative to methadone, which is only available at urban methadone treatment centers.
Another benefit of the program, says Kennedy, is it gives primary care physicians “an alternative to cutting their patients off and judging them or just barring them.”
Before she was an assistant professor of nursing, Marian Wilson ’13 PhD was clinical research coordinator at Coeur d’Alene’s Kootenai Medical Center, where she helped study the number of people visiting the emergency department for opioids. The goal was to direct them to primary care providers who could better help them. Not that that is the perfect solution. The research literature suggests primary care providers are not particularly adept at pain management.
“There are 20 different options you can give that patient,” says Wilson. That makes it very difficult for a primary care provider who gets ten or 15 minutes with a patient to solve his or her chronic pain problem, she says.
For her dissertation, Wilson looked at a self-directed Internet-based program to help people reduce their reliance on opioids and manage their pain through non-medical alternatives like increased physical activity, social support, thinking more positively, and dealing with emotions.
“Over time with chronic pain,” she says, “you become so frustrated, you become so fearful of movement, you become so depressed, that you don’t really know what is the pain and what is the anxiety, what is the sadness, what is the fear. By helping to pay attention to your thoughts, you can begin to get a handle on some of that.”
Wilson found that after eight weeks on the Internet-based program, participants said they were misusing opioids less and felt more confident they could manage their pain. Some people may never be free of pain without being completely sedated, she says, at least with today’s science. But people can change how they interpret their pain and find ways to deal with it.
“We can increase your confidence that you can do things and be active with your pain,” she says. “We can reduce the interference that pain has in your life. So your quality of life and your ability to
return to work and things like that will improve even if I can never take away your pain.”
Wilson’s study also found that the more participants engaged in the program, the less pain interfered with their life. The pain was also less intense. Engagement is not easy, particularly on the Internet. You can lead people to words, but you can’t make them read. A support group might help that, giving people a chance to learn from the successful strategies of others. Wilson is now helping with the design of a support group led by Ron Weaver.
After getting off hydrocodone, Weaver came across The Mindfulness Solution to Pain by Jackie Gardner-Nix, a pain expert in Toronto. An adaption of Buddhist meditation, minus the religious aspects, mindfulness has one pay deliberate attention to experiencing the moment, pain included, without negative judgments. Weaver is now counseling people individually and in a group setting on how to deal with their pain through techniques like mindfulness, stress reduction, diet, exercise, and body awareness.
“Nobody ever told me that opioids over the long term actually increase your pain,” he says. “I don’t think anybody should ever be given their first hydrocodone without that talk and it’s not happening. You’ve got people like me walking out the hospital door going, ‘Now what?’ And I want to be the one that gives them someplace to go.”
Mindfulness is also a big part of both the work and life of Tracy Skaer, a clinical pharmacist, who deals with the injuries of multiple accidents and lupus, an autoimmune disease that causes chronic inflammation.
“I used to do mindfulness walking my horse down the road and just listening to his footfalls,” says Skaer. “Nothing else. That’s my moment. No stresses about work. Nothing. And letting that go is a great release.”
Now, with her WSU colleagues Dennis Dyck, Donelle Howell, and others, she is doing a pilot study in which the mindfulness technique is used with family groups, whose lives are often disrupted by a spouse in pain. Several studies have shown the technique is effective in treating sleep disorders and pain, stress, depression, and in preventing relapses for people with substance abuse histories, says Skaer. Preliminary evidence also suggests that when mindfulness practice is combined with family education and support, it can reduce pain intensity, the use of opioid medication, and psychological distress, and improve marital satisfaction.
“These participants, when they get done with the program, they usually have an ‘aha’ moment, like, ‘Wow, I had no idea that this is what was really bothering me,’” says Skaer. “They’re able to identify the negative feedback behaviors that have affected their ability to feel better. It’s powerful medicine and it’s without medicine, without medication.”