ROCHESTER, NY (WXXI) - One day, Rebecca Shriver was at work, helping an elderly patient get to the bathroom, when the patient became unsteady.
“If I didn’t put my leg out and try to catch her, she would’ve cracked her head on the wall,” Shriver recalled.
Shriver was a certified nursing assistant at the time, in Buffalo, New York. She had twisted her knee a few months earlier, and that day – as she tried to keep her patient from falling – things took a turn for the worse.
“We both fell and that resulted in the disease I have now,” Shriver said.
Shriver developed something called complex regional pain syndrome, a chronic pain disease that has spread from her right leg to her groin, buttocks and back over the past seven years.
“It’s like I can feel the nerves. I can feel them just on fire,” Shriver said.
To deal with the pain, Shriver took hydrocodone in long- and short-acting form for years. But when she missed an appointment with her longtime pain doctor and couldn’t reschedule right away, she ended up without medication. Her pain became unbearable and she went into withdrawal. She went to the emergency room, where she got pain pills and injections.
But once she was able to see her doctor, Shriver said, “She accused me of buying street drugs. She said those words exactly, ‘I know you bought street drugs.’ ”
Shriver said her doctor explained that a urine test showed elevated levels of her medication – something that Shriver thinks may have manifested because of her visit to the emergency room. Her doctor decided to stop treating her.
“I felt abandoned. And just scared, overall scared,” Shriver said.
As more and more efforts are being made across the country to curtail opioid prescribing, some say a culture of fear has developed in the medical community. Fear for patient safety. Fear of being prosecuted by regulators. One fallout is a growing population of patients, sometimes called “inherited patients,” that no one seems to know exactly what to with: pain patients who are already dependent on opioids and have to find new doctors willing to treat them.
Shriver was referred to Dr. Paul Updike, medical director for substance abuse services at Catholic Health in Buffalo, by the doctor who stopped treating her for pain.
“Ultimately, she eventually found herself without anybody to really take care of those medications,” Updike said.
The epidemic has put physicians on high alert that opioids can lead patients to addiction, Updike said, something that takes time to monitor.
“As the concerns have become more and more, providers are less and less inclined to go through that work. They’re just more inclined to say, ‘OK, I can’t do this anymore’ and ‘Stop, stop the prescription,’ which really may not be the best move,” Updike said.
Some doctors are also concerned because of growing regulations and investigations. The Drug Enforcement Administration, for example, recently announced that a 45-day investigation led to 28 arrests and 147 license revocations.
“Particularly in the western New York area, but I think throughout the country, there’s been so many of these cases. More and more physicians are afraid that they are going to get into trouble if they prescribe these medications to a patient,” Updike said.
But in some cases, stopping prescriptions alone is not the solution, said Dr. Douglas Gourlay, former director of pain and chemical dependency at the Wasser Pain Management Centre in Toronto.
“It presupposes that all of those inherited patients will quietly go off in the corner and suffer and do nothing about it. The reality is they do plenty about it.”
Gourlay has been writing about inherited patients for years. He points out that opioid prescribing guidelines tend to address what do to with new patients, leaving physicians unsure of how to help pain patients they inherit.
“What do you do with all the people who we put on opioids? Are we simply willing to accept that a big number of them will die? Because they’re going to buy pills off the street? I mean, is that a win?” Gourlay said.
Rebecca Shriver considers herself lucky. She found new doctors, like Updike, to treat her. She stopped taking hydrocodone for pain and now takes medical marijuana and suboxone instead.
“It’s like a fog has been lifted from my brain,” Shriver said.
She’s happier with her new regimen. She just wishes that she didn’t have to have such a traumatic break in treatment to get to it.
Denise Young contributed to this story, which is part of a WXXI News series on the ripple effects of the opioid epidemic. The project is a collaboration with ideastream in Cleveland and Oregon Public Broadcasting.