Pain patients say they can’t find doctors to treat their conditions. Many are distraught, some are suicidal. Others are rallying together to make their voices heard.

By Taylor Knopf

People who have relied on their medication just to get out of bed, care for their children or tend their garden are struggling to find doctors who will prescribe opioids amidst the current drug overdose epidemic.

This is the second in a series of three articles examining the consequences of the nation’s crackdown on opioid prescribing. Read Part 1: Hundreds of N.C. Doctors Say They’ve Stopped Prescribing Opioids

Online support groups are filled with desperate pleas from people unable to find a doctor to treat their pain.

In recent months, NC Health News has been contacted by patients who can’t get insurance companies or pharmacies to fill their prescriptions, from patients who have been discharged from pain clinics because they couldn’t make a spontaneous 24-hour call in for a pill count, and from people who are struggling due to forced medication tapering.

Many are distraught saying they experience anxiety and depression. Desperation has led some with pain and chronic diseases to seek street drugs or contemplate suicide.

But some pain patients are rallying and making their stories known.

‘Don’t Punish Pain’

A group called Don’t Punish Pain (DPP) was started by a pain patient in Rhode Island. Now, it’s spread into a grassroots movement mainly through Facebook groups. The organization is made up of volunteers in each state who have made flyers and posters and encouraged their fellow pain patients to rally for visibility.

These patients are urging anyone who will listen to consider the plight of chronic pain patients during an opioid crisis that has seen the deaths of tens of thousands from overdose. And this includes people who suffer from pain related to aging, injuries and chronic illness such as a range of autoimmune diseases.

Groups in major cities across the United States held rallies simultaneously on Sept. 18. (These rallies were postponed in the Carolinas due to Hurricane Florence. Don’t Punish Pain rallies will be held at 11 a.m. on Oct. 30 in Asheville, Charlotte and Raleigh.)

“It’s a civil rights movement,” said Jessica Stewart, DPP volunteer organizer for North Carolina. The state’s DPP group has about 165 members as of the beginning of October. The national Don’t Punish Pain Facebook group has more than 7,000 people and counting.

Stewart is a pain patient herself. Originally from Pamlico County, she now lives in Charlotte and has been diagnosed with a number of chronic problems, including Ehlers-Danlos syndrome, a connective tissue disease that causes frequent joint dislocations and bruising to the skin. Stewart says she needs opioids to manage her pain and allow her to do the things she loves, such as spend time with her 8-year-old daughter.

She, like many others, has faced barriers to getting her medication. Stewart has had doctors lower her medication amount. She was kicked out of a pain clinic after staff called her in for a random count of her pills when she was out of town. The random counts are often used by clinics to ensure that patients are not taking too much of their medications.

Stewart said she had one physician simply say that he could no longer treat chronic patients because the health care system he was a part of no longer allowed it.

Eventually, she decided to stop working. Stewart said the decision left her feeling defeated.

“When I couldn’t work, I was like a shot dog,” Stewart said. “I don’t do well without being able to do anything. I need to accomplish things.”

What is chronic pain? The definition of chronic pain varies. The CDC defines it as “pain that typically lasts more than three months or past the time of normal tissue healing. Chronic pain can be the result of an underlying medical disease or condition, injury, medical treatment, inflammation, or an unknown cause.” The CDC says that about 11 percent of American adults report feeling pain on a daily basis and that between 9 and 11 million U.S. adults were prescribed long-term opioid medication in 2005. The Institute of Medicine states that pain is a public health issue that affects more than 100 million Americans.

One morning, she said she couldn’t even dress her daughter because her hand “got stuck.”

Stewart’s story is not uncommon.

‘Non-compliant’ and ‘Drug-seeking’

Beverly Schechtman, a Wake County mother of two, has Crohn’s disease and arthritis. Thankfully, she says, she doesn’t need opioids every day. However, she is in and out of the hospital with some frequency due to kidney stones, surgeries and sepsis.

She was in the hospital once when she missed a random pill count at a pain clinic.

“I was put down as noncompliant,” she said. “When you’re sick all the time, it makes it a lot more difficult to get the treatment you need.”

It was an incident during a hospital stay last November that drove Schechtman to advocate for pain patients. Passing several kidney stones at once, she went to a local emergency department for pain management.

The attending physician read her file and asked about her history with P.T.S.D. medication. He continued to inquire until she finally disclosed that she took the medication as the result of abuse when she was a child. The doctor then said he couldn’t give her anything for her pain because of the childhood trauma.

His rationale? Research shows the more trauma someone experiences at a young age, the more likely they are to develop some physical and mental illnesses, as well as an increased likelihood to abuse substances.

According to Schechtman, the doctor said he was saving her from becoming addicted to painkillers. The letter she received from the hospital after filing a complaint echoed the doctor’s reasoning.

“They put me down as ‘drug-seeking.’ That used to only happen if they couldn’t find a reason for the pain,” she said. “It felt very much like discrimination.”

Schechtman noted that when people who struggle with addiction tell their stories, they often say it caused them to lose everything. But, “for a pain patient, they say that pain medication gave them their lives back.”

Fighting for others

Stewart, the DPP organizer for North Carolina, said she finds purpose in being an advocate: for herself, other pain patients and possibly her daughter.

She worries her disease could be passed down genetically, and she’s concerned about her young daughter who frequently rolls her ankles.

“I’m looking at her and seeing the same issues,” she said.

Stewart said she was fortunate to connect with a physician about a year ago who specializes in treating chronic pain.

“It was to the point where if I didn’t find a doctor, I would have ended up doing something illegal,” she said choking up. “And I don’t like marijuana or alcohol. I don’t like feeling out of control.”

On the DPP Facebook groups and other online chronic illness support groups, members warn each other against going to the streets for pain medications, citing high rates of fentanyl overdose.

Steven Prakken, pain specialist and psychiatrist at Duke Health in Durham, said he has patients with white collar, high paying jobs who disclose that they’ve used heroin when they couldn’t obtain their pain medications.

“I tremble,” Prakken said. “This is not a small number, and this is an urban area.”

He said he can’t even imagine what happens in rural areas where there are fewer treatment options.

Prakken also said 60 percent of people living with chronic pain have major depressive disorder.

“It’s a normal response to a bad situation,” he said.

“And if that’s not treated, it goes badly,” he said. “If they are suddenly dumped off their meds, that goes badly, not just for pain but for mood disturbance when you’re going through withdrawal. It’s a horrible physiological kind of shift.”

Suicides due to pain

Suicides as a result of chronic pain and medication cut-offs have been reported anecdotally around the country — from a woman in Oregon with a traumatic brain injury to a veteran in Virginia who suffered complications of a stroke.

Thomas Kline, a pain physician in Raleigh, has been collecting reports of these types of deaths on his blog. He’s dedicated his practice to taking what he calls “pain refugees.” Kline’s patients have chronic diseases and pain. Some had been denied care at least 10 times and were suicidal.

He said he’s trying to prevent those suicides.

“A lot of us are near killing ourselves,” Stewart said. “We are having people dying and I know I was almost one of them.”

She and others in the pain community who spoke with NC Health News say they’re angered by the attention opioid overdose deaths get, while the deaths of pain patients are often overlooked.

“Why is it the lives of those who die from overdose are being tracked, but not those who die from suicide?” Stewart said.

Suicide deaths are “likely grossly underestimated” and underreported, especially during a time of rising drug overdose deaths, according to a paper published in the American Journal of Public Health in 2014.

Determining intent behind drug overdose deaths would require medical examiners to work with psychiatrists who can assess self-harm motives related to the death and incorporate interviews with family, friends and acquaintances of the deceased into the investigation, researchers wrote.

This technique is called a “psychological autopsy.”

While research to support the practice is there, a trained workforce is not, the paper concluded.

Deborah Radisch, the North Carolina Chief Medical Examiner, said it’s difficult for her team to discern whether an opioid user overdoses accidentally or intentionally.

“A lot of the chronic pain patients that are on higher concentrations of painkillers, it’s impossible to know if that was the day they just had enough, or if they accidentally took too much,” she said.

If the person had a strong history of suicidal ideation, then her team might be able to make a ruling of suicide. Radisch added that there are other methods by which people deliberately end their lives, but are hard to determine, such as car crashes.

“We know there are a certain percent of motor vehicle crashes are suicides, but we are unable to determine those,” she said. “Driving while angry or driving while distracted… it’s very difficult to discern intent.”

Unless someone leaves a note, which Radisch said occurs in fewer than 20 percent of suicides, it’s difficult to discern the intention behind an overdose death.

Tomorrow: pain and opioid issues go beyond prescribing