CHRONIC PAIN PATIENTS FEAR OPIOID CRACKDOWN WILL COST THEM THEIR MEDICATION
“My nerve damage causes pain, and where the scar tissue wraps around the spinal cord it’s like sandpaper,” said 53-year-old Karen Begeal, who lives in Vancouver, Wash. “Every time I move, it gets worse. I can look fine to you right now. I can walk in the store for a few minutes but if I’m not leaning on a cart, after just a few minutes I get to where I can hardly stand up.”
Begeal says this while sitting in a plush beige easy chair, surrounded by a dozen personal items. Her purse, computer, briefcase, pillow, blanket, sweater, cane, pens and paper, and a cup of water are all within arm’s reach. That’s by design, since Begeal’s chronic, debilitating back pain keeps her in the chair for most of her day, every single day.
For 20 years, Begeal has been managing her pain with a strict daily regimen of opioids.
Opioid medication can be extremely addicting and deadly. Since 1999, prescription opioids have contributed to the deaths of nearly 200,000 people in the U.S., according to the Centers for Disease Control.
State and federal regulators are now cracking down on how doctors prescribe opioids, in hopes of stemming the deadly national epidemic. Doctors have been told to cut back on the strength and number of opioid prescriptions they write, leaving fewer people who are at risk of overdose or death.
But for chronic pain patients like Begeal, the new rules aren’t life-saving. They’re life-threatening.
“To live without pain medication – I wouldn’t want to think about it,” Begeal said.
In the early 1990s, Karen Begeal ruptured two disks in her back while she was moving boxes at her job at an insurance company. She managed the pain with physical therapy and was retrained as a computer systems engineer. She loved installing and rebuilding computers.
In 1997, her back ruptured again.
“I felt it go. The guy sitting next to the desk I was working at heard it pop,” she said.
Doctors discovered extensive scar tissue in Begeal’s back, stemming from her original injury. She has since also been diagnosed with fibromyalgia and a genetic condition called Ehlers-Danlos Syndrome, where her body is unable to properly build connective tissue.
“You’re never going to work again,” she remembers her doctors telling her. “I was allowed up two hours a day – sitting, standing, walking, everything. That was out of bed.”
Begeal was suddenly faced with a lifetime of limited movement and chronic pain.
She underwent her first of multiple back surgeries and her doctors prescribed a regimen of Vicodin, the name brand for hydrocodone, which is an opiate painkiller mixed with Tylenol.
Begeal had to take at least one Vicodin every four hours.
“It was this constant roller coaster with pain meds. You take it and it has to have time to ramp up. It’s OK for a little bit, and then it ramps down, then it’s time for the next dose,” she said.
Since then she’s been prescribed several opioid medications, including oxycontin and a fentanyl patch, the latter of which left her sick for days.
Begeal also had a doctor stop prescribing her medication without notice, leaving her scrambling to find a new physician. At one point, she was driving from Vancouver to Salem monthly for a doctor who would abide by her long-term opioid plan.
Now she has a physician in Vancouver who prescribes what Begeal says is the lowest dose she can handle: two 100-milligram extended-release doses of morphine each day and a few Percocet pills for days when she does something active and her pain is too much to manage.
“I have a condition,” she explained. “I manage my pain condition with my pain meds, and limiting what I do and how I do it, and taking care of myself as best I can. Because there’s no changing it.”
In a perfect world, Begeal would love to be off pain medication but her condition requires a constant stream of opioids for her to have any quality of life.
Begeal says the pain is always simmering and the rare times she forgets to take a dose, her pain and early withdrawal symptoms shock her out of sleep.
“My body is addicted, not my mind,” she said. “I learned a saying long ago: ‘The drug addict takes drugs to escape life. A pain patient takes drugs to return to life.’ We’re not looking to escape. We want to participate.”
Right now, Begeal’s doctor continues to prescribe her the medication she needs. But new guidelines mean he could be punished for the prescriptions he’s writing.
Doctors shackled by new guidelines
Opioid overdoses have quadrupled over the last two decades. Drug overdoses are now the leading cause of death for Americans under the age of 50. Many overdoses are from opioids including heroin, fentanyl and prescription painkillers.
That led state and federal administrators to take drastic action. In March 2016, the Centers for Disease Control issued stricter guidelines for doctors who prescribe opioids. Among them: Nonopioid therapy such as physical therapy is preferred for chronic pain; when opioids are used, the lowest effective dosage should be prescribed; and providers should always exercise caution when prescribing opioids.
The guidelines were widely adopted by states, including Oregon and Washington. In the summer of 2017, the CDC issued a buoyant update: Opioid prescriptions nationwide had fallen 22 percent from 2010 to 2015, before the new guidelines were adopted. With the tougher recommendations, they were expected to fall even further. Continue reading on next page…