Silas Bowen gripped the seat as the car drove around a big curve heading onto the highway. He closed his eyes and took deep breaths as the bumps and motion of the car sent sharp pains up his spine, making his legs tingle. Bowen is 24 years old and has Ehlers-Danlos syndrome, a genetic disorder that affects his joints, skin and blood vessels.
And because Bowen hasn’t had his usual opioid prescription since October, when he gets home from this trip, he said he won’t leave his house for over a week. He said that's how long it will take to recover from the car ride.
“Because my collagen is faulty, it affects the tissue between my vertebrae in my spine. So if I go over a pothole, it jars my spine,” Bowen said. “It’s gotten to the point where I won’t go outside for weeks at a time because I know if I do something I’ll regret it. I’ll be in so much pain afterward.”
As the opioid epidemic continues, government regulations and medical research have pushed doctors toward prescribing fewer opioids, leaving some patients with complex diseases and chronic pain few options for relief.
“I’ve been on opioids for the majority of my life, but within the past couple of years it’s been pretty difficult,” Bowen said. “I do feel like a lot of the reason [doctors are] so hesitant to having people on opioids is because they’re so afraid someone under their care will abuse them or overdose.”
Since 2012, Kentucky and the federal government have cracked down on doctors prescribing opioids for pain management. That year, the state legislature passed a bill creating the Kentucky All Schedule Prescription Electronic Reporting system (KASPER). The system tracks every opioid prescription in the state – as well as other controlled substances – and providers have to go through a more rigorous process to document their prescribing.
In 2011, before KASPER was created, 54 percent of Kentucky workers with workers’ compensation claims were given a prescription for opioids. After the law took effect in 2012, that number decreased to 44 percent, according to a 2017 study.
Charles Kodner, a professor and doctor at the University of Louisville, said he knows physicians who have stopped prescribing these drugs altogether.
“They don’t want people to overdose, they don’t want to get into licensing trouble,” Kodner said. “And, it is in fact a bit of extra work in one’s practice to do pain management and get the reports we’re supposed to do.”
In 2016, the federal government issued guidelines for prescribing opioids to patients with chronic pain issues. Providers were instructed to prescribe the lowest dosage possible, and to go slow on ramping up doses. The guidelines also set a seven day limit for people getting opioid prescriptions for acute pain from an injury. Kodner said even though the guidelines didn’t change best practices in opioid prescribing, they spooked providers.
“The CDC guidelines were just another reason to be frightened of opioids and people have used that as a reason not to do it,” Kodner said. And he said it's now more difficult for doctors who still prescribe opioids.
Other Options?
There are also emerging studies that have found that using opioids long-term doesn’t necessarily help improve chronic pain.
One study from the U.S. Department of Veterans Affairs compared people with chronic back or knee pain who took opioids with those who took over-the-counter pain relievers. The findings showed patients who took opioids had the same or better pain scores than people who took over-the-counter pain medication.
University of Kentucky professor and doctor Michael Harned said this study and others have showed opioids are less effective over time, and that’s another reason doctors have stopped prescribing them altogether. But Harned said it’s important to remember that the VA study only looked at people with back and knee pain.
“The studies help tailor our treatments. If we are in a room with a patient who has osteoarthritis of the knee, we have a reasonable study we can stand with,” and not prescribe an opioid, Harned said.
But there are few studies on how a patient with Ehlers-Danlo syndrome, for instance, handles pain on opioids versus being on an over-the-counter medication.
“If we’re sitting in a room with a patient with a different condition that doesn’t have great evidence about how to manage it, then we have to individually tailor the treatment options,” Harned said. “We might need to prescribe opioids.”
James Patrick Murphy, an addiction and pain doctor in New Albany, said for years providers were overprescribing opioids, and there were consequences. In 2016, opioids were involved in 42,249 deaths in the U.S.; three-quarters of those people were taking prescription opioids.
There are thousands of medical conditions that lead to pain, and Murphy said opioids aren’t always the best course of treatment.
“A patient says, ‘I hurt.’ Is that because you have nerve damage? Well, you know you treat nerve damage pain different than you treat someone with a broken bone,” Murphy said. “That might actually need epilepsy medicine, or might need antidepressant medicine. Because some of those antidepressants actually work on nerve damage pain whereas morphine would not.”
'I definitely feel like I need it'
Silas Bowen understands why there’s been a crackdown on opioids. But Bowen also knows his own day-to-day life. The collagen in his body is weak. He says when he goes to sleep at night, his hip bone will fall out of its socket because the collagen around the hip is too loose. His skin tears easily and his windpipe sometimes dislocates during conversations.
“I don’t like being on pain medication at all," Bowen said. "But I definitely feel like I need it."
Bowen has both Medicaid and Medicare because of his disability, but insurance will only pay for 12 sessions a year of physical therapy. So, for about three months out of the year he goes to a rehab hospital in southern Indiana where there’s a warm pool. There, he does exercises to strengthen his joints.
“It helps a lot when I can do it, but pretty soon after I stop doing it, things kind of fall apart again,” Bowen said.
During the other months, Bowen walks with a cane to get exercise. He's also prescribed Cannabidiol oil, which is derived from the cannabis plant. He said it helps to dull the daily pain.
But when it comes to outings to a park or even the movies, Bowen just doesn’t do it anymore. He said the only thing that helped the severe pain that came with those activities was opioids.
