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.
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.”
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.
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
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Taylor…thank you!
Thank you Taylor! In today’s environment, as a person living with Intractable pain, the stigmatization is palpable at Dr’s offices and pharmacies. I can feel changes coming to my doctor’s practice, comments and indirect answers about the CDC actually recommending 50mme; I’ve been reduced to the 90mme for going on two years, have had to discontinue stable (STABLE) meds for sleep and anxiety, and the only muscle relaxer that works for me was changed to one that provides such little relief I rarely take it.
Still having pain medication is a blessing; so many have been abandoned by the medical community. How can our doctors, who know the treatments that have been tried with no relief, stand by and allow our care to be controlled by the government?
I can only speak of how my treatment went but every therapy was attempted. PT (many reoccurring episodes and all types), biofeedback, chiropractor, accupuncture, hypnosis, steroid injections (not FDA approved), epidurals, multiple nerve blocks, RFA, on and on, and ultimately a botched and damaging surgery. Over greater than a decade of treatments!! Only then was medication management started. And it provided me with something of a life!
Now, with the attack on intractable pain patients, tens of thousands of people who are chronically ill and injured are without appropriate pain management. People are suffering!
The effects on those outside of the pain community are being recognized, somewhat. When their child has to have wisdom teeth removed or their elderly mother gets banged up in a car accident, and the doctor refuses pain control, they’ll be angry. Or surgery patients being discharged on Tylenol (horrible on the liver).
What has come to constitute care is deplorable and is causing needless pain and high impact limitations to patients who were stable and compliant.
There’s new intractable pain patients “born” every day. What is the medical care for those who have tried everything, those who are diagnosed today and those injured today? There’s no proven “one size fits all” treatment for the vast and various disabling and destructive medical conditions people are afflicted with, and many are afflicted with multiple. It’s common sense there’s needs to be individual patient consideration. I am truly appalled that medical professionals are following these “out of the box” guidelines; they are looking at us as a liability, red tape. They are even questioning if they “were trained right in treatment of pain”. They’re turning into sponges of doubt, they’re looking for ways to end our care without “abandoning” us. Our country needs a reality check, this crusade will affect everyone. In one way or another. It’s inevitable.
Your writings mean so much to so many people!!! So much needs to be said Taylor, thank you for continuing your work!
Hi Taylor, we chronic pain sufferers are very grateful to people like you for writing these kind of articles and bringing this issue to light! In my case, like so many others, my pain is result of doing roofing for over twenty years and rupturing discs in my back at least six times and having permanent nerve damage going down my leg and knee. Our pain is real! So many people have had all kinds of terrible injuries and diseases and deserve to be treated with compassion! Why is this government treating us like selfish drug abusers and criminals? It’s maddening! My heart goes out to all the children and people out their who need their opioid MEDICATION to be able to live their lives in peace.
Take care.
I have passed kidney stones. The pain is unimaginable. For the doctor not to give a patient pain medication is cruel. I can’t even imagine.
Thank you for your article. I hope many people read it. I am a chronic pain patient and member of North Carolina DPP.
Just found your site!! How ironic it is that a rally is in Charlotte and I live just down the road. Perfect timing too. I have an appointment on Oct. 29 with a new pain specialist. I actually dread beginning the process but geeez! It really sucks to know that you’re gonna be eyeballed for drug seeking behavior right off the bat. Osteoarthritis, five foot surgeries then diagnosed with Rheumatoid Arthritis. My health ripped my self esteem away by forcing me to get on disability at 44yrs old. I will forever be dependent on someone else because due to the nerve damage from multiple foot surgeries, I cannot drive!! No freedom. And I eat NAIDS like tic tacs. I am not going to even pretend to be optimistic about this new doctor, things usually go better for me if I stay hopeless.
Thanks for reading!
Thank you so much for the article! I wish I could blast this information across the news and everyone’s social media, but in my experience no one wants to like or share the information because of the stigma that goes with opioids. It’s so sad, because they don’t think about that it could be them tomorrow or a family member that needs help with pain and no one will help. I know someone who is suffering from the arbitrary CDC guidelines and it makes me feel horrible not being able to help. Thank you for being out spoken this is a serious issue no one is talking about!
Taylor, et al. I write and speak as a 21-years experienced subject matter expert in chronic pain and public policy for addiction. Though I am not a licensed physician, I have over 50 published articles and papers in just the last 6 years on this subject.
I find your article very much on the mark. Pain patients are literally being killed by the desertion of their doctors, and the malfeasance of US and State government authorities who have totally mis-directed public policy initiatives in the restriction of pain therapy for people whose only crime has been that they hurt.
As a support for your work and your readers, I offer the following resource. See particularly, the top two entries. These comprise an after action report on proceedings of the September 25, 2018 meeting of the Department of Health and Human Services Joint Inter Agency Task Force on Best Practices in Pain Management, and a 3-minute video clip of my presentation before that group.
http://face-facts.org/Lawhern/
To expand on the presentation, I would reinforce the central message: over-prescribing by physicians to their patients did not create and is not sustaining America’s public-health “crisis” concerning opioid addiction and mortality. And published data of the CDC prove it beyond any reasonable contradiction. For a power point presentation demonstrating the medical evidence, page down to mid-page here:
http://face-facts.org/atip/ [“Analysis of US Opioid Mortality and ER Visit Data”.
I’ve been trying for months to get the US CDC to take on this analysis and the downloaded data sets on which it is based. And CDC has stone walled even their own data. They won’t look at it, knowing that it blows a train-sized hole right through their rationale for restricting opioid therapy to hundreds of thousands of patients who need it.
Come talk to me about the medical evidence on opioid prescribing and mortality.
I find that the writing on this supposed opiate epidemic is absolutely some of the worst journalism related to a topic I have ever seen. There seems to be nobody writing in journalism, not the New York Times, nobody—— related to the medical background, more specifically, the differences in the opiate medications.
The United States is being flooded with fentanyl. Fentanyl kills. Fentanyl is only used in operative procedures.OxyContin is not what’s killing people. OxyContin is used for pain relief. And now no one can get it.
I don’t have an issue with chronic pain but I see clients almost every day who are suffering out of their heads due to the poor Medical care and control of their pain. It’s absolutely scandalous. And you won’t find a physician or physician extender that will stick their head up in order to address the issue.
I’d move to another country. Marsha Hammond, PhD, licensed psychologist North Carolina
Something needs to be done. There are too many innocent people who are being affected by these new guidelines, and regulations that are being implemented across all states. There are people who have been on these medications for years, and have never turned into addicts. It’s not right for lawmakers to lump everyone in together with those who abuse Heroin. Drug abusers are always going to find something to abuse. The only thing this is doing is causing those that take there medications, as prescribed, to no longer be able to get their medications. If something doesn’t change, the death toll is going to rise, not from overdoses, but from chronic pain sufferers committing suicide.
To fight back remember the FDA holds the key. FDA is the only agency mandated for rules on all drugs. They do not place limits on the dose of any pain medicine. CDC has no legal standing. Their recommendations are voluntary. Mandated, legal, guidelines from FDA take precedent. Mention this to your doctor.