Opioids mean relief - and humiliation - for these pain patients

Sherlin Larsen, 31, resting at her home in Crofton, Md., with Arya, the 12-month-old mastiff who is being trained to alert and help her with the panic attacks that worsened after a horrific car accident 10 years ago in rural Pennsylvania.

Through the decade following a car accident on a rural Pennsylvania road that peeled back her scalp, left four pieces of titanium in her arms and “many, many staples,” Sherlin Larsen took one post-surgical bottle of prescription painkillers and nothing else stronger than Motrin. Then an attempted fix to her shattered hip joint started to fail.

“I finally gave in and asked for an opiate to help me until my replacement later this year,” said Larsen, now 31 and living in Crofton, Md. Her doctor refused and sent her to a pain management clinic, where “suddenly, I’m being scrutinized like I’m trying to sniff the stuff up my nose or sell it on the streets,” she said.

“I was spoken to like a neglectful child. Like a junkie.”

Many people who take prescription opioids for chronic, sometimes excruciating, pain report similar experiences feeling humiliated and stigmatized by the reactions they get from doctors, pharmacists, even friends and would-be employers.

“I hate that I’m considered bad because I need pain relief,” said Kelly Johnston, 38, a mother of three from San Antonio, Texas, who has Crohn’s disease as well as ankylosing spondylitis, a severe type of inflammatory arthritis that mostly affects the spine. It afflicts 2.7 million Americans but has few visible symptoms.

She lost her best friend, who “had heard through the grapevine that I abused my medications and that nothing was wrong with me,” said Johnston, who says she has worked diligently with her rheumatologist to cut back on her medicines.

When Northeast Philadelphia pain patient Lynn Frank wrote an essay for the Inquirer, “I am the other side of the opiate crisis” this summer, more than 200 people from around the region and around the nation responded. Most wanted desperately to let others know about the pain they have, the partial relief they get from opioid medications, and the critical, even disgusted looks and comments they get, even from their closest relatives.

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Lynn Frank

Many said they understand why the epidemic of fatal opioid overdoses has led to a massive crackdown on prescribing. Some even expressed disdain for people whose opioid use had led to addiction. “They are as obvious as a pimple,” one woman wrote.

What many pain patients can’t fathom is why their plight doesn’t garner more sympathy.

“People have a hard time understanding that you need to take the medication. They don’t get it.  And because they don’t get it you become removed, isolated, a lot of people get depressed,”  Frank, 64, said in an interview after her essay appeared.

Attitudes toward those who take medicines as prescribed for pain have not yet become a topic for academic research. But opioid pain relievers are chemically similar to heroin, and stigma against heroin addicts is historic and deep. Law enforcement and public health campaigns to stop diversion of prescription medicines may reinforce this association.

“We all see big signs at pharmacies: ‘We Don’t Give Opioids Without ID,’ ” said Emma McGinty, who studies policy and attitudes involving mental health and substance abuse at Johns Hopkins Bloomberg School of Public Health. “Some of that potentially can trickle down and inform public attitudes.”

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Kelly Johnston, 38, of San Antonio, who suffers from ankylosing spondylitis, a degenerative spine condition, vacationing in Colorado last year with her children Sherri, 11, Seth, 10, and Stella, 2: “I hate that I’m considered bad because I need pain relief.”

Criticism and even verbal abuse from physicians, pharmacists, and emergency room workers was cited by dozens of patients who wrote in about their experiences taking medication for pain.

“I just stopped giving that information [about pain medicines] when I see the eye doctor or the gynecologist because I don’t want to go through that,” wrote a woman with pain from multiple orthopedic surgeries stemming from years of ballet. She has learned to get off her prescriptions and endure the pain when facing work-related drug testing.

Emily E. Hurstak, an internist and addiction-medicine specialist affiliated with the University of California-San Francisco, interviewed doctors and, separately, their patients who were on pain medicine and had histories of substance use. Her findings appear in a paper published this year in the journal Substance Abuse.

Sometimes the same conversations are interpreted differently by doctors and patients.

“Doctors are thinking about risk to the patient but also risk to the community,” she said. So a doctor might limit a prescription out of concern the drugs might be shared, sold, or stolen. Yet patients, she found, are thinking about their own behaviors and use of medications.

“When a doctor says you might be at risk,” Hurstak said, the patient hears it as, “I do not trust you with use of this medication and you might not be smart enough to use it correctly.”

Drug-related deaths have grown to an estimated 64,000 nationwide last year, driven by addiction that often begins with prescription opioids. Still, researchers have generally found that less than 8 percent of patients prescribed opioids go on to develop a substance-use disorder. Of non-medical users of opioids, perhaps 4 percent move on to heroin.

But as many as 100 million Americans are estimated to have been prescribed opioids for pain.

Public health campaigns, aimed largely at reducing fatalities, emphasize that most opioids are not effective for most patients with chronic pain, which are the average findings of numerous studies. That doesn’t mean, experts say, that some patients won’t do well on opioids long term — or perhaps do well only on opioids.

Hurstak is concerned that the giant “pendulum shift” in how the medical community relates to opioids might be “going too far” and hurting some patients who need the medications.

In fact, she said, she has heard talk of another group that might be getting stigmatized: doctors who prescribe opioids.

Profiles in Pain

 

Nora Long, 47, Dresher 

It has been 25 years since Nora Long, a registered nurse, hurt her back lifting a paraplegic patient.

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Nora Long

“I’ve had countless Medrol Dosepaks” — a steroidal anti-inflammatory medicine — “MRIs, days spent in bed, unable to go to the bathroom alone or even dress myself, frequent trips to the doctor, and many different pain meds,” Long said. She had herniated discs and required epidural steroid injections, even while pregnant.

She started on opioids within a year or so of the injury, but used them sparingly. “The doctor would say ‘Do you need more Percocet?’ and I would say ‘No, I still have a whole bottle.’ ” She would substitute Dilaudid (hydromorphone) when the pain was at its worst. “I didn’t want to be on more than one at a time.”

Just over a decade ago, before most people had ever heard of opioids, she walked into a pharmacy with her toddler. She’d had a bad reaction to a generic combination of oxycodone and acetaminophen, so she asked whether they carried the brand name Percocet.

The woman behind the counter “looked at me with disgust and asked me if I knew how much a brand name Percocet pill was worth on the street,” Long said. “I looked at her blankly and told her ‘No, I can honestly say I don’t know the answer to that question, but I guess you do?’ I snatched my prescription from her hand and walked out with my 2-year-old daughter’s hand in mine.

“I felt so disgusted and ashamed, but I wasn’t a junkie.”

She had spine surgery two years ago — “my L4-L5 disc was hanging out, broken into three pieces” — and weaned herself off the pills over a couple of weeks. She works as an independent contractor doing infusions.

“I no longer need opiates. Thank God,” Long said, reflecting on how the pharmacists “would look at me like I was dirt on the bottom of their shoes. … I hope that, as a nurse, I’ve never made anyone feel the way I was made to feel when I needed to take meds for a legitimate reason.”

Jon Gold, 45, Northeast Philadelphia

Jon Gold broke his back in 2013. He is half-paralyzed from the waist down — he has no sensation on one side, from his toes to his backside, but full feeling on the other. He suffers neuropathic pain in his feet that he describes as constant electric shocks.

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Jon Gold, on his 45th birthday.

Gold tried nerve blockers, entered a clinical trial for a spinal cord stimulator, and had surgery to install a pain pump, which “did absolutely nothing” to help him.

The only thing that banished most of his pain was a combination of Percocet and extended-release morphine. But his physicians will no longer prescribe them, he said, because he used to occasionally take an extra pill when the pain was severe and therefore run out a few days early, meaning the medication would not show up in a monthly urine test. That result is considered a risk factor for abuse — he could have been selling them — and would likely be entered in his medical record.

Now he is prescribed Suboxone, which can be used for pain but is better-known as a treatment for substance abuse. It alleviates only about half his pain, making it difficult to leave his apartment. Gold sends a letter to prospective doctors describing his history but so far hasn’t found any willing to prescribe the only medicines he said really worked.

“I assure you, taking medication for my pain has absolutely nothing to do with getting high,” he tells them. “It is about having some joy in my life. It is about having a quality of life. It is about stopping the pain, and that’s all it’s about.”

He posted a video he made on Vimeo:

A few months ago, Gold got tired of lectures about his pain medication from friends, and put a bluntly worded post on Facebook.

“My pain is my own. Only I know what it feels like. Only I know what has helped it,” he wrote. “It’s this simple, if you want to judge me for wanting to stop my pain with something I know works (after trying SO MANY things), then you are simply not a friend I need or want to have.”

He says he lost two of what he thought were his best friends.

Carol Geller, 65, Marlton

Carol Geller first had surgery for Crohn’s disease when she was 17. That was nearly a half-century ago.

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Carol Geller

“I have had four bowel resections, as well as a multitude of abdominal surgeries to repair hernias and adhesions.  My scar tissue is so painful at times there is no relief for me and I do not want to have any more surgery, nor does anyone want to perform it,” she said in an email. “Because of all the missing bowel that I have as well as no gallbladder and all the scar tissue, almost everything I eat causes me to suffer from severe gas, bloating, diarrhea, and all of the other things that go along with it.”

She has been on Tylenol with codeine for almost 40 years, taking a dose containing 30 milligrams of codeine two to five times a day. “It is the only thing that works,” she said.

Geller used to be a medical secretary. When she applied for jobs, “I would tell them you are going to find stuff” in the pre-employment drug screening. “I can show you the prescriptions,” she said. She is certain that she got fired by a hospital in Massachusetts when her boss learned the test results, which are supposed to be confidential.

“I would like to get a job,” she said. “But the thought of getting a drug test … it’s not worth the anxiety and the aggravation and the fear of someone coming down on me and saying ‘You take drugs! You are a drug addict!’ “