PORTLAND, Maine — Chronic pain affects more than 100 million American adults, according to the Institute of Medicine. That's more than the total affected by heart disease, cancer and diabetes combined. It costs the nation up to $635 billion a year in medical treatment and lost productivity. But that treatment, according to the Institute of Medicine, is often inadequate. The institute says a cultural transformation is needed to improve the way pain is understood and treated. A program at Mercy Hospital in Portland strives to do that by shifting chronic pain sufferers away from medication and toward behavioral therapy.
Two days a week, Stephanie Alasady cares for her 18-month-old grandson Fallen. Pretty typical stuff for a grandmother.
But when Fallen was a newborn, Alasady couldn't imagine caring for him. She could barely hold him for five minutes. She has fibromyalgia - chronic pain throughout the body, "from my shoulder blades down to my spine, my tailbone," she says. "Just - like fire. Like somebody lit me on fire."
The pain started about 15 years ago while Alasady took care of her elderly father. It progressed to the point where she was so uncomfortable, she couldn't even sit for more than a few minutes at a time. She tried a chiropractor and did physical therapy. She took opioid pain medications. But the pain was all-consuming. Her life was relegated to lying on the couch.
"So I really didn't see I was going to have any kind of life. So at 42, it rolled up around me and I began realizing - I was thinking suicide."
Alasady's caseworker suggested she go to Mercy Hospital and try the Living Life Well Pain Rehabilitation program. It started about three years ago. It's a 12-week, group-based program that helps people learn to cope with chronic pain. Medical director Dr. Stephen Hull says it combines multiple strategies: behavioral therapy, medication management, and physical exercise.
"For years, pain management has been writing orders for physical therapy, for medications fairly strongly along the opioid line, sticking needles in people," Hull says, "but not really focusing attention in a structured fashion on how we can help folks improve function."
Meaning that the goal at Living Life Well is less about reducing pain and more about helping people resume the activities that are important to them. But the two can go hand in hand. Participants in the program see an average of about a 40 percent increase in function and a 20 percent improvement in pain.
"Our experience is when patients make a conscious effort to carry pain with them and move towards the people and things important to them, they actually do better," Hull says. "They have not only improved function, but, often, they have less pain. The pain becomes less of a directing force in their lives."
What it takes to resume those important activities is changing the way participants respond to pain.
"What we do is we try to differentiate hurt from harm, which is a really big distinction we make way early in the program," says Joel Guarna, the program's psychologist. He says when someone feels pain, it's natural to stop doing whatever is causing it.
But for those with chronic pain, a lot of times the damage has already been done. A walk around the block may cause pain, but it isn't necessarily causing the patient more harm. Guarna spends hours in class teaching participants to view their pain differently - to see that it's not a threat, that they can do many of the things want.
Participants put it to practice in a twice-weekly exercise class. "All right - and tap in front," says instructor Megan Davis.
Les Fine follows Davis' lead and taps his feet. Fine is a semi-retired contractor who says he's had a bad back for about 30 years. He's blown out some discs, had epidurals and various procedures, and taken opioids for a long time.
"And one of the biggest reasons I'm here is to get off of them," he says. "They were making me dull. Spiritually dull. Fatigued all the time. And it affected my marriage."
Dr. Stephen Hull says opioids can be effective for acute pain, but tend to make chronic pain worse. Living Life Well tries to reduce participants' reliance on opioids. Les Fine was so eager to wean himself, four weeks into the program, he reduced his medications by about a third.
"I think this class has a lot to offer," Fine says. "I've been in a lot of pain for a lot of years, but they're offering me an alternative how I look and deal with it. That's what I need right now. Because pain is always going to be there, and I don't want to treat it with drugs anymore."
Stephanie Alasady - the woman who now cares for her grandson - says before she started the Living Life Well program, she didn't think it would work, didn't think minimizing her medications and changing her response to pain would make such a difference. But she was wrong. She says she still has pain, but it is no longer all-consuming, and that has given her hope.
"I was ready to check out, and I have life," Alasady says. "I've been given my life back. I took my life back from pain."
