Dr. Stephen Hull breathed in deeply and spoke in soft, soothing tones to a class of eight students in a small conference room at Mercy Hospital in Portland. All of them closed their eyes.

“Notice your scalp. Notice how it feels. If there’s pain, recognize it,” Hull said, before verbally moving on to the face and eventually the rest of the body down to the toes.

Hull teaches the Living Well Pain Rehabilitation Program,”which uses meditation, exercise therapy, group discussions, lectures and other techniques to help patients learn how to alleviate and cope with chronic pain.

What’s missing is opioids, which Hull said are not proved to be effective to reduce chronic pain. Research and experience have shown that opioids are addictive and patients who take higher doses risk dying from overdoses.

“I want to get them all off of opioids. That’s my goal,” Hull said. “We are giving them the tools here to live a vital life.”

Dr. Stephen Hull leads the program for alleviating and living with chronic pain at Mercy Hospital.

Dr. Stephen Hull leads the program for alleviating and living with chronic pain at Mercy Hospital.

Maine is in the midst of an opioid epidemic – including a surge in overdose deaths – and one way the state is attacking the crisis is a tough new prescribing law, one of the strictest in the nation. The law aims to help cut off the pipeline for those who become addicted to opioids by reducing the supply of opioid pills flowing through the state, capping dosages, preventing doctor shopping and cutting back the length of opioid prescriptions. Four out of five new heroin users first abused prescription opioids, according to the American Society of Addiction Medicine.

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But the new law begs the question: If patients are no longer receiving opioids for chronic pain, what can they do instead?

“If because of the new law physicians are now reluctant to prescribe opioids, they are looking for alternatives,” Hull said.

Hull believes his multidisciplinary program, if replicated across the state, could be an answer. Mercy operates the only program of its kind in Maine, and it’s rare across the country. While official counts are hard to come by, there may be fewer than 100 such programs in the United States.

The program, which includes Hull, a psychologist and exercise therapist in addition to office support staff, costs about $700,000 per year to operate, although it depends on how many patients they have.

Hull said they “became disenchanted with the outcomes” of patients who were on opioids and began researching alternatives. Hull said he visited programs at the Mayo Clinic in Minnesota, the Cleveland Clinic in Ohio, a pain clinic in Bath, England, and other places before devising the Mercy Hospital program.

The Living Well program started 3½ years ago and has graduated 220 students. Of those, 40 percent were taking opioids when they started the 12-week program. Half of those had quit opioids by the end of the program and an additional 25 percent had substantially decreased their dosages.

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Mercy has not yet measured long-term outcomes, but plans to do so, Hull said.

The number of people on opioids is staggering, with hundreds of thousands of Mainers being prescribed opioids for pain, although many are taking them for acute pain after surgery, or are cancer or end-of-life patients dealing with pain. About 16,000 are taking high doses – 100 morphine milligram equivalents or higher – and many of them must be weaned to a lower dose under the new prescribing law.

‘IT’S ALL IN YOUR HEAD’ – AND REAL

Everything Hull talks to the patients about is based on decades of research, but sometimes the class sounds like common-sense wisdom or a list of things your mother used to say.

Stand up straight. Volunteer. Socialize. Tell jokes. Exercise. Eat healthy. Everything in moderation. Go outside to enjoy nature. Get off the couch. Have a positive attitude. Get enough sleep.

They are simple tasks, but the kinds of things that are easy to forget during day-to-day living.

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But even using all of the techniques that Hull teaches is not a magic elixir to eliminate pain.

In fact, the idea that your pain could be taken away is not realistic, Hull said.

“I don’t want you to ignore your pain. It’s real and it’s there,” he said.

Hull said pain is “not what’s going on in your extremities” but your brain interpreting threats to the body. Sometimes the brain does not accurately gauge the severity of the threat, which is why even after an injury has healed, the location of the injury will still hurt and send pain signals to the brain. If the brain believes the injury is a big threat, the pain will seem worse, even though the injury already has healed.

“It’s all in your head, but that doesn’t mean your pain is not real. It is real,” Hull said.

The brain’s role in regulating pain explains why, when someone is focused on a task, such as reading a good book or putting together a project, the pain is reduced.

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“Your brain is interpreting all of this in the context of everything that is going on in your life. It’s very complex,” Hull said.

The challenge is people who are suffering from pain often stay focused on their pain and do less, ending up trapped in a negative cycle.

Among Hull’s teachings is the role the immune system plays in suppressing pain. For instance, if a patient can reduce inflammation – such as through diet, moderate exercise and using ice packs or heating pads – that can help alleviate pain.

But there’s also danger in not paying attention to the signals that your body is giving you, Hull said. At a recent meeting of an alumni group of patients who still meet with Hull to discuss how they are coping with pain, patients described feeling in terrible pain the day after they overexerted themselves exercising, such as walking twice as far as they did the day before.

“Don’t overdo it. Every day do a little bit more than you did the day before, and gradually build up to your goal,” Hull said.

At the same time, you can’t be afraid to try things just because you might experience pain. People attending the alumni group described a number of activities they did the previous week, including parachuting, nature walks, playing with grandchildren and drumming.

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“Fear of pain makes it so that you don’t want to do anything,” patient Drew Floyd said. “Pain is isolating.”

And that leads to a vicious circle.

“The less you do, the less energy you have,” Hull said.

‘MIGHT AS WELL DO SOMETHING’

Floyd, 35, of Portland, used to be mired in a negative cycle that began after she slipped two disks in her back several years ago, and required surgery when she was living in San Francisco.

Doctors in California immediately prescribed her opioids, and she took Oxycontin and oxycodone.

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She moved back to Maine to be close to family, but her life spiraled downward from there. She ballooned to 370 pounds and sat on the couch most of the day.

Floyd expected doctors would find a way to completely take away her pain, and when that didn’t happen, she would eat whenever she felt pain.

“A big part of what Dr. Hull teaches is to be present in your body and not to run away from the pain,” Floyd said.

Before she started the Mercy program, Floyd quit opioids and started eating healthy, losing more than 150 pounds. She now avoids flour and sugar and weighs all of her food.

Drew Floyd cooks a healthy meal in her Portland home.

Drew Floyd cooks a healthy meal in her Portland home.

Hull said that diet is important in pain management, and he encourages patients to eat a Mediterranean diet consisting mostly of vegetables, fruits and seafood. Red meat should be avoided as much as possible, he said, as it can contribute to inflammation.

Floyd said she still needs help to learn how to cope with her pain, but the other day she played basketball for 15 minutes.

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“I would have never done that before,” she said, noting she has learned to enjoy activities that she previously avoided.

“You have to get past the attitude of ‘I can’t do it the way that I used to do it, so I don’t want to do it at all,’ ” Floyd said. “I’m going to have pain whether I do something or do nothing, so I might as well do something.”

Floyd, who is on Social Security disability, said her next goal is to relaunch her career, even if she can only work part-time. She used to work as a therapist for autistic children.

THE LONG-TERM COST OF OPIOIDS

There are 66 interdisciplinary pain programs in the United States accredited through the Commission on the Accreditation of Rehabilitation Facilities. The commission doesn’t have historical data to compare over time, and it’s difficult to know how many unaccredited programs exist nationwide.

But Penney Cowan, CEO of the American Chronic Pain Association, said that historically, as the United States became more reliant on opioid prescribing, multidisciplinary pain programs fell out of favor.

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“As a society, we want instant everything, including instant pain relief,” Cowan said. “There are no easy answers.”

Cowan said as the opioid crisis has deepened, she is noticing a shift in thinking about pain management, and she believes pain programs that take a holistic approach, like the one in Portland, could start to proliferate. But for now, patients don’t have many choices.

During Hull’s class, one patient said she went swimming for the first time in two years.

“It was painful, but it was fun,” Michelle LeClerc of Westbrook said.

Justin Tanner of Westbrook, who has a painful condition in his feet, said he plays with his children more and attends more activities since he joined the program. Tanner said he quit opioids, but he had no tools to cope with his pain and found himself disengaged from family life.

Tanner said he now finds himself in less pain than when he was on opioids, a sentiment echoed by several patients.

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“The long-term price of opioids is your pain is worse,” Tanner said.

Hull said it’s a common refrain from chronic pain patients who are no longer taking opioids: Their pain is often reduced or, at worst, no worse than it was before; they can think more clearly and engage in activities better.

Lisa Sanborn of Scarborough said she had a spinal fusion a few years ago and she was prescribed Oxycontin and oxycodone. She quit Oxycontin and recently cut her oxycodone prescription in half.

Her goal is to wean completely off opioids.

“I don’t want to be associated with them anymore,” Sanborn said.

She said her pain level is the same, but she feels better and no longer sleeps in until 3 p.m.

“The program has completely turned my life around. I think so much more positively now,” Sanborn said.


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