Pain Patients Fear the Future Amid Opioid Crisis

By Zachary Siegel 11/27/16

As overdoses surge, doctors are cutting back on prescribing opiate painkillers—at the cost of those who actually need them.

A doctor holding out a pill to a man climbing pill bottles (cartoon)
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As a young woman, Cindy Laux developed a toxic relationship with alcohol. It was after her very first sip, she recalled, that she fell under its spell. Laux described the moment as though it was love at first sight.

Such a powerful response led Laux to sober up at just 22 years old. She went the traditional route: attended 12-step meetings and sponsored other women along the way. She became a fixture in her Southern California recovery community—a person upon whom fellow recovering friends could rely.

While working as a nurse in the intensive care unit, Laux broke the fall of a heavy patient, and injured herself in the process. After nearly a decade sober, at 31 years old, Laux was prescribed opioid pain relievers for her injury.

“The first time I took opioids it didn’t give me the same feeling as alcohol,” Laux said, during an interview with The Fix. “There was no euphoria, no float-y feeling—just some pain relief.”

Her response to alcohol was nothing like her response to opioids, she said, debunking a common myth for people in recovery that all drugs lead you down the agonizing road of addiction. Once an addict always an addict, a common phrase in the recovery community, turns out not to hold up for everyone.

But Laux’s injuries didn’t stop there, nor did her prescriptions to opioids.

After numerous back surgeries, Laux developed adhesive arachnoiditis, a rare condition typically brought on by too many medical procedures. The result is chronic, intractable pain. A searing hot sensation, like a gunshot wound, shoots up and down her body. She says at times it feels like her skin is on fire.

“I went from going to meetings and helping others to being bed bound,” said Laux. But opioids offered her some relief, and also a semblance of a real life, one in which she could be there for her family and friends while remaining active in her recovery community.

These things, she said, keep her going. 

But her quality of life dramatically changed when Americans began to overdose from opioids in record numbers.

Overdose deaths from painkillers have quadrupled in just 12 years. From 1999 to 2014, over 165,000 people have died in the U.S. from opioid overdoses, according to the Centers for Disease Control and Prevention. Such startling figures necessitated action by the federal government. The result of that action—namely, rolling back the number of painkiller prescriptions—has left patients like Laux in a precarious position, fearing for their future and ability to remain on opioids to treat pain.

“I was a star patient,” said Laux, describing her status in a California pain management clinic. “I had gone from using a walker to hiking every morning in the hills with my dog and friends.”

Being active in the world, something most of us take for granted every day, is critical for pain patients, Laux said.

But while overdoses surged month-by-month, Laux’s doctor began to scale back her dose of opioids. “I asked him why every month for six straight months,” she said.

Finally, after months of asking, the doctor provided Laux with a straight answer. Laux said he told her, “Apparently, people are dying.”

Indeed people were (and still are) dying. Every 19 minutes a life is lost from an opioid overdose.

But patients like Laux and several others interviewed for this story insist they are not the ones contributing to the tidal wave of overdoses across the country. They cannot understand why they are the ones bearing the brunt of new policies aimed at reducing mortality rates by federal and state efforts to scale back opioid prescribing.

Last March, the U.S. Surgeon General wrote a historic letter addressed to all prescribers, urging they exert caution when prescribing opioids to their patients. Days later, Dr. Nora Volkow, director of the National Institute on Drug Abuse (NIDA), published a letter of her own addressing the plight of chronic pain patients on opioids.

“Although the exact numbers are not known,” Volkow wrote, “the majority of people with opioid use disorders are not pain patients and did not start that way.”

Indeed, the most recent surveys from the Substance Abuse and Mental Health Services Administration (SAMSHA) show over half of misused opioids are not prescribed by doctors. That same survey found that out of the 97.5 million people prescribed to painkillers during 2015, only 12.8 percent misused them.

Other studies have shown that addiction (not physical dependence) in chronic pain patients who take their medication as prescribed, is rare.

“The risk of addiction in a pain patient new to opioids with no history of substance abuse or psychiatric illness is tiny,” said Dr. Howard Fields, who holds doctorates in neuroscience and medicine from Stanford University, and is the founder of the University of California San Francisco Pain Management Center.

Furthermore, the number of chronic pain patients who die from an overdose while in treatment is also rare. The most recent study found that out of 39,449 patients on opioids for longer than three months, only 59 of them died from “opioid-related causes.”

That's .2 percent of patients who died in this study.

The vast majority of overdoses and addiction, then, are coming from medication that is diverted—not prescribed—from the medical system.

A Washington Post investigation sheds light on how so many pills wound up on the black market. Their reporting found that the Drug Enforcement Agency failed to go after distribution companies that were responsible for storing and shipping painkillers to pharmacies across the country. These companies were found responsible for letting hundreds of millions of pills wind up on the black market, addicting and killing thousands of Americans as a result.

Given pain patients like the ones interviewed for this story are not contributing to the swelling mortality rates, they’re vexed over the CDC’s new set of prescribing guidelines, which focus on opioids for treating chronic pain.

“I’m shocked at how arbitrary and biased the guidelines are,” said Zip Cyzk (not her real name), who has been on opioids for nearly two decades to treat Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder.

Her joints, ligaments and tendons, are all suspended with too much slack, and they constantly move out of position, causing pinched nerves and muscle spasms. Without opioids, Cyzk’s pain is unbearable.

The CDC’s guidelines also recommend doctors reduce their patients' dose of opioids to an equivalent of 100 milligrams of morphine. But Cyzk, and nearly every pain patient interviewed for this story, takes doses higher than that.

With the exception of cancer treatment and palliative care, the CDC recommends that patients should not be on opioids for pain lasting longer than three months. But Dr. Fields, from UCSF, said that the long-term use of opioids being ineffective for pain is not evidence based. As of now, there is no study on the effectiveness of opioids that goes beyond three months.

"Why doesn't the CDC put their money where their mouth is,” asked Fields, “and fund a study that shows whether long-term opioids beyond three months increases pain, maintains it or loses efficacy?” 

Fields said it’s only sensible to have the appropriate evidence before publishing guidelines that have resulted in many individuals complaining about increased pain.

But Dr. Andrew Kolodny, an addiction psychiatrist and executive director of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group that gave the CDC feedback on the guidelines, says the majority of pain patients are not being helped by opioids.

His advocacy efforts aim to reduce the number of prescriptions for opioid pain relievers, which is the fundamental tension between himself and the pain patient community.

The Fix interviewed Kolodny about the concerns raised by chronic pain patients. Dr. Kolodny is the former chief medical officer at Phoenix House, a chain of non-profit addiction treatment centers, and is now the co-director of opioid policy research and a senior scientist at Brandeis University.

It is his opinion that these patients are not functioning well because opioids treat their pain, but rather because the opioids relieve them of withdrawal.

“Heroin users will use some of the exact same language pain patients use to explain how opioids help them,” he said. “They wake up and feel agonizing pain, and they take their opioid and their pain becomes bearable.”

Patients are deeply offended by this sentiment.

“He is lumping me in with someone who is doing heroin on the street,” said Britt Johnson, also known as Hurt Blogger. Johnson, 31, writes a blog about her experience with rheumatoid arthritis.

“I have a job, I’m married—I’m simply not in the same user category,” she said. To be sure, Johnson said, she sympathizes with people who become addicted; she just isn’t one of them.

But Kolodny believes millions of pain patients have been "prescribed into addiction." Asked which definition of addiction Kolodny is using to describe pain patients, he pointed to the criteria for moderate-to-severe opioid use disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM). That means at least four symptoms of addiction must be present.

Laux, who is now 54 years old and intimate with both pain and addiction to alcohol, is frustrated when she’s accused of being addicted to opioids.

“I’ve been sober for decades,” she said, “so to say I’m not really sober, that I’m addicted to opioids, is unfair.”

Kolodny maintains that pain patients are being manipulated by the opioid lobby to think that cautious prescribing efforts are punishing them for the bad behavior of so called drug abusers.

Patients interviewed for this story insist their pain is real. They want people to know that chronic pain reduces their life expectancy, doubles the rate of suicidal ideation and quadruples the rate of depression and anxiety. Reports of pain patients committing suicide who have been cut off from their medication are becoming more and more frequent. Patients want to be seen as medical patients who need care—not drug seekers.

To be sure, opioids do not help everyone with pain.

When Mark Beretta was 28 years old, he was in a horrendous car accident that compressed his cervical spine. He’s now 60 years old and lives with chronic, intractable pain.

“Back in 2006, this doctor had me on OxyContin and my tolerance kept catching up with me,” said Beretta. He said his doctor tried to increase his dose to 300 milligrams of OxyContin three times a day. But when Beretta refused to go that high, his doctor put him on methadone.

While methadone took away Beretta’s pain, he called it an “awful” medication and said he almost died trying to taper off of it. “It’s nice being off that awful methadone but still my pain persists,” he said.

In an e-mail exchange with Kolodny, Beretta said that PROP’s efforts helped him, and that high dose opiates for his pain proved disastrous. "I got caught up in the middle of it for 28 years and it almost killed me,” he said. “I had to learn to deal with the pain on a daily basis by keeping my hands busy at all times."

Beretta said nights still haunt him, that he’s sleep deprived because pain wakes him up at 3 a.m.

The challenge for pain treatment moving forward is to understand: for what kind of patient are opioids appropriate? “There are two critical things we need to look at over the next two to three years,” said Fields. The first, he said, is whether overdoses go down as prescribing of opioids goes down. The second is, if we take people off their opioids does their pain actually get better?

So far, the former has yet to pan out. The number of prescriptions has been declining since their peak in 2012.

“But let’s keep attacking the supply of drugs, because that’s worked so well the last 50 years,” Fields said sarcastically.

Ever since Laux had her medication scaled back, she’s not able to hike, to care for her family and attend her AA meetings.

“My activity level is about a quarter of what it was when I was on an effective dose,” she said.

Laux called her existence depressing. She said she spends six days out of seven in bed because her doctors are afraid to prescribe her the higher dosage she needs.

“It’s not just me who hurts when I’m in pain,” she said. “It destroys everyone that I love.”

 Zachary Siegel is a master’s candidate at the University of Southern California’s Annenberg School of Journalism. He has been a regular contributor to The Fix since 2013. Follow him on Twitter.

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Zachary Siegel is a freelance journalist specializing in science, health and drug policy. His reporting has also appeared in Slate, The Daily Beast, Salon, Huffington Post, among others. He writes often about addiction, sometimes drawing from his own experience. You can find out more about Zachary on Linkedin or follow him on Twitter.