Growing up, Amie was always double-jointed. Compared to her peers, she could extend her joints far past what was normal. For some kids, double-jointedness is like a party trick. But as Amie grew older, it became painful. She started dislocating her joints. Eventually, Amie was diagnosed with Ehlers-Danlos syndrome, characterized by hyper-mobility and chronic pain.
For a while, Amie mostly resigned to staying home. The pain got so bad some days that she couldn’t get out of bed. She couldn’t concentrate on work, and she had to quit her job as a Center City health care attorney in 2012.
In the years since her initial diagnosis, one technique has worked better than the rest to manage her pain: opioids.
Amie is among more than 460,000 Philadelphians who have taken a prescription opioid in the last year. Many of them, like Amie, take the drugs for legitimate reasons.
But now, due to strict CDC guidelines inspired by the nation’s worsening opioid abuse epidemic, people suffering from chronic pain are having trouble getting their meds.
“The public perception is…people were prescribed opioids to treat pain, and they accidentally became addicted and moved onto heroin,” said Brooke Feldman, a person in longterm recovery who has written about the topic. “But there are people who benefit from these medications.”
Indeed, the grand majority of people who take prescription opioids do not fall into the addiction trap.
Per stats from the National Institute on Drug Abuse, between 8 and 12 percent of people develop substance use disorder after being prescribed opioids, and an estimated 4 to 6 percent of people who misuse prescription opioids transition to heroin.
Dr. Ira Cantor of Phoenixville, Pa., said he treats many patients with chronic pain — often by prescribing opioids.
It does require “considerable attention to detail,” he said. “When you’re dealing with patients with chronic pain, the decision to prescribe an opioid or change a dose requires you to look at a lot of other factors,” like a patient’s past prescription history, their co-occurring medical conditions and any side effects.
But in many cases, he finds opioids are still the best solution, something he thinks many doctors are now fearful of doing.
Physicians have become “gun-shy,” Cantor said, because doctors and pharmaceutical companies are often demonized for over-prescribing.
There are precautions doctors can take, per Cantor. The CDC recently released prescription drug monitoring programs, which give access to a patient’s full prescription history. Using the PDMPs, a doctor can tell if patients are getting drugs from several doctors at once.
“If they have, that’s a red flag,” Cantor said.
Cantor also performs toxicology tests — like the traditional urine drug test — and he asks patients to complete a questionnaire that includes tip-offs to potential addiction or misuse.
Every day, Cantor said he sees “loads of patients” because their previous doctor refused to continue prescribing their opioids.
“It’s been very common that…their doctors started tapering their medications, and they became much less functional,” Cantor said. “Many patients end up being bed-bound.”
Meeting in the middle
There are actually two opioid epidemics occurring at once in the United States, Cantor insists.
One is the opioid addiction and overdose epidemic. The other is people with chronic pain.
“The other epidemic, in many ways, is even larger,” Cantor said. “There are millions of people who have chronic pain, and they’re being forgotten. They’re being ignored.”
Amie counts herself as one of the lucky ones, despite her double-jointed condition — her physician hasn’t attempted to taper her off her medication.
With a low dose, she can finally get out of bed in the morning, and she even started volunteering for the Coalition of 50 State Pain Advocacy Groups. But from her advocacy work, she now knows knows countless chronic pain patients who have lost access to their medication because their doctors are wary to prescribe. Through Facebook, she’s even heard of people committing suicide because they lost access to their opioids.
Feldman, the recovery advocate writer, has also heard of pain sufferers ending their own lives because they were kicked off their prescriptions.
“When you’re living with pain and it’s not being treated properly,” Feldman said, “the thought of suicide becomes very real.”