Off opioids, chronic pain sufferers find new ways to cope
Stephen Newman had managed his pain with opioid medications, but was tired of the growing suspicion and mistrust he encountered when trying to get prescriptions
By Brie Zeltner
The Plain Dealer
CLEVELAND, Ohio — Stephen Newman was sick, frustrated, angry and in pain when a friend suggested he try acupuncture to treat his chronic inflammatory and immune-related health problems.
Until recently, Newman had managed his pain with opioid medications, but was tired of the growing suspicion and mistrust he encountered when trying to get prescriptions as well as the increasing restrictions and regulations imposed on doctors and pain patients as a consequence of the heroin and fentanyl overdose epidemic.
Newman, 32, had never considered acupuncture, he said, but had instead spent years struggling to find a doctor who could accurately diagnose his rare conditions, an inflammatory arthritis of the spine called ankylosing spondylitis and an inherited immune disorder called common variable immunodeficiency. Both conditions caused severe pain, which began in his teens.
"When I was 15 they said it was growing pains. That's what that was. When I was 18 and it didn't go away then it's conversion disorder or I'm making it up," he said.
After spending most of his early 20's in and out of the hospital with painful bowel symptoms and the need for repeated nasal feeding tubes, Newman finally found out what was wrong with him. He then started years of opioid pain medication, as well as infusions of antibodies to help support his weakened immune system.
The pain medication helped, he said, but Newman still didn't feel "well," he said. "They don't address the underlying cause, so I was still in pain and the damage is being done from the inflammation and autoimmune disorder. It was only treating the surface symptom."
In 2010, he tried acupuncture for the first time. Last summer, his immune disorder went into remission and he credits the therapy for helping him achieve pain relief and balance in his life.
"Once I started doing the acupuncture and everything to treat the underlying cause, that's when I really started to get better," he said. Newman changed his diet, and also started breathing and stretching exercises recommended by his acupuncturist, Jared West. He no longer takes opioid medications for pain. "My doctors can't believe how well I'm doing now."
Colleen Felice's back pain began in 2000 when she herniated a disc lifting a golf bag. Felice, 65, of Columbia Station, and her 64-year-old husband Michael, both worked for the Cleveland Police Department before retiring. Michael Felice's pain problems began in 2005 when he slipped on some cement steps in the rain and fell while chasing a suspected murderer.
For years, both she and her husband took buprenorphine, a semi-synthetic opioid originally developed as a painkiller and now used widely as a medication assisted treatment for those suffering from opioid addiction, to control their pain. They were also prescribed other opioid medications.
The buprenorphine helped at first, but then stopped working. Both weaned off the medication in October.
"I've had acupuncture. I tried pretty much everything there was to try before we went to a new [pain management doctor]," Colleen Felice said. After trying nerve blocks, which didn't help, Medicare recently paid for a surgically-implanted, battery-operated pump that delivers morphine directly into her spine.
Colleen Felice had the pump implanted in January, and said she feels great, and is now able to do more during the day. "I can walk the dogs a lot farther, I can work around the house forever, and I can walk around the grocery store," she said. "Anything and everything, I can do more."
She also now takes fewer medications for other health conditions, she said, because her blood pressure has improved since her pain is under control.
Michael Felice plans to have a pain pump inserted as well after he recovers from a stay in the hospital for an unrelated illness. The pumps are expensive, but last on average four to five years, and need to be refilled with medication in a doctor's office only every three months.
Colleen Felice is relieved not to have to think about oral medications anymore. "Those things are a pain," she said. "You have to remember when to take them, how much to take. When you don't have a real good memory, that's not so good."
Exercise and Marijuana
Therese Pohorence, 68, of Cleveland, took Percocet and Vicodin for years to treat her neck arthritis, shoulder injury and back strains. She also tried Lyrica, a medication for nerve pain. "I kept saying 'No, the pain's still there, I need something stronger,' but all of that never helped."
So about 10 years ago, she stopped taking all of it, said Pohorence, who retired in 2009 after working in the senior services division at the Salvation Army. Since then, she's relied on over-the-counter anti-inflammatories, exercise and marijuana. She does have to take a sleep aid to help with pain at night, she said.
"Movement helps the most," she said. "Movement is so much better than any drug. Maybe that first second or two will hurt but then you start to feel better."
Pohorence doesn't go to a gym, but instead keeps active with walks and gardening in her Cudell-Madison neighborhood on the West Side.
The marijuana helps, too, she said, though she's not sure if it eases the pain or with "not minding it." She doesn't use much, she added, smoking about an ounce every three weeks.
"Maybe people drink one or two beers a week. I smoke pot. I would love it if they'd legalize it, then my insurance could pay for it instead of me."
For Elliott Ingersoll, a Cleveland State professor and psychologist, the path to chronic pain began in his 30's with ruptured discs in his lower back from doing martial arts and weight lifting.
"I'm kind of an intense person, and I like to go at things full throttle," Ingersoll, 56, said. With time and physical therapy the discs healed, but then he re-ruptured one of them.
In his early 40's arthritis began attacking the damaged joints, causing increasing pain that radiated out from his spine. "People think this is like a middle-age backache. You don't understand; when your legs go out from under you and you can lose bladder control, it's really a mess."
Over the next fifteen years he managed the pain from the degeneration of the discs with prescribed opioid pain medication and physical therapy. Surgery was not recommended because of the position of the discs he'd injured.
In the past few years, getting his prescription for hydrocodone refilled was sometimes difficult, as pharmacists would question his need for the medication despite having the same doctor, and the same dose, for more than a decade. The anxiety over having the prescription denied began to take a toll on Ingersoll, who started looking for alternatives.
"I had a couple times where I went into withdrawal until my doctor could clear up [a problem with getting the prescription filled]," he said.
In Early February, he had a minimally invasive procedure, called ablation, which uses heat to destroy the nerve fibers on both sides of his spine that carry pain signals to the brain. Eventually the nerves regrow, and the procedure is repeated, usually about a year later.
For Ingersoll the effect was almost immediate. The pain no longer enveloped his back. It was now small, confined to a little area on either side of his spine, and bearable.
"I went over to the rec center and I was running," he said. "They've got 150-pound tires and I was doing tire flips. It was great."
Ingersoll is nearly weaned off the hydrocodone he's been taking for years. He's relieved not to have to think about the medication much anymore.
"I've never felt this optimistic," he said. "I feel more back in control of my life."
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