Why I Am Stepping Back from Patient Advocacy

By Barby Ingle, PNN Columnist

Each year at Thanksgiving, our family has a tradition of choosing a community project to support. Every year we do something different: caroling, feeding the homeless, or spending time at the local nursing home. But 2006 was different. The year before, I was diagnosed with Reflex Sympathetic Dystrophy (RSD), a chronic nerve disease that my late stepsister also developed.

We had much trouble getting help and care, so at our Thanksgiving dinner in 2006, we decided to start a 501c3 nonprofit to support the RSD community. Although we had joined other support groups and worked with other nonprofits, it was not what we expected. We wanted to be something different. We wanted to be inclusive of patients, caregivers, providers, legislators and providers treating RSD specifically.

But after the first year, we saw that the same challenges we were working to overcome with prevention, diagnostics, treatment and long-term care were happening to many patients dealing with other chronic pain conditions.

BARBY INGLE

Since helping to start the Power of Pain Foundation – also known as the International Pain Foundation (iPain) -- I learned a lot. I went to classes to learn more about RSD, as well as over 150 other chronic and rare disease conditions.

I would say I became an RSD expert, and over the years taught many healthcare professionals, patients, caregivers and industry leaders about treatments, long-term outcomes, and how to navigate the system from the patient point of view.

I have learned that not every patient wants help, not every patient needs help, and not every patient wants the help that you can give. Having a degree in social psychology was helpful. I understood why there are haters, naysayers and pessimists in the pain community. They are in all of society, why would they not be in our community? 

I remember when I was coaching Deb, our marketing director, she would tell me: “Everyone needs a break sometimes. Take your vacations, take your days off, and leave the job behind.”

Well, when you have a chronic illness, you can’t just leave it behind. I have tried. However, you can take time for yourself. It is not your job to help everyone, even if you want to. It is even more necessary to take care of yourself first.

Therefore, I am following Deb’s advice and stepping back. Mostly it’s because I grew tired of the negativity and hate that comes from being in the leadership position that I was in. Whenever we did an iPain project or chose a “Hero of Hope” recipient, I was thanked and would tell people that I only had one vote. But some did not understand that I literally had just one vote.

Today, I have no vote. As of January 1, 2023, I am no longer President of the iPain Foundation. I still love iPain, and I am still going to volunteer for projects and events. But I am going to take the next two years to do other projects and things for me as a patient, wife, sister and human.

The amount of hate I received over the years for doing something that I have passion for became just too much. I was often told, “You only get to do this because of your position” and “If I was in charge, I’d do it differently.”

To those who said that, watch what I do next. You can do many things, whether you have a position of leadership or not. You can take classes (there are many great ones online) and learn how to do the things you think are important. I have done that and will continue to do it. I will show the pain community that you can do big things without a leadership position. Yes, you can be a leader in action, without the title.  

I wish the 2023-24 leadership of iPain all the best, and hope they succeed everywhere with all they take on, create and produce for the pain community. I am glad to have the stress of the job off my shoulders. Am I done? Yes, I am out!

We will see if I join another board of directors in the future, but for now I will do what I have always done as a pain patient: go into the world to make a difference. I am excited to get back to writing columns for Pain News Network and iPain Living Magazine. I am working on a few more books to publish, some additional presenting, and working on legislation in the coming years.

I have a few of my bucket list items to check off, and I will go on more life adventures with my husband, Ken. Most of all, I will be excited to say more and do more of what I want to do, and not out of obligation for a position I was voted into.  

To the pain community: Be good to each other. Remember you get the help you can be given, not always the help you need. The anger, frustration and negative feelings you face are yours. They are normal feelings for a person in pain, but please also remember the person you reach out to for help may not be able to provide the help you want.

Keep going forward. The help you need is available, how you get there is optional. Taking out those negative feelings on others, especially the ones closest to you, is the ultimate way to drive others away. It is your choice. I choose to get out of the negativity and to work on making a difference. To be a little bit more concise, “You be the best you, I will be the best me, too.”

It can be a win-win situation for us both, which is always good. 

You can find me on my personal social media, you will see more articles from me at PNN and other outlets, and you can always check out my personal website to find out what I am up to next. There will be much more to come, and I promise to continue to make a difference and help in ways that I can. I hope I motivate you to do the same for yourself.  

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts over the years. You can follow her at www.barbyingle.com 

My Story: How I Was Medically Gaslighted

By Preslee Marshall, Guest Columnist

I remember the first time I experienced what felt like an electric shock sensation. It was a sudden zap out of nowhere, and I wasn’t sure what to make of it. 

It started happening about once a month, then turned into once every two weeks. Before I knew it, this painful experience was happening several times a day with no apparent explanation. 

Recognizing that the pain I was feeling wasn’t normal, I went to a walk-in clinic to get answers. 

I went over my symptoms with a doctor and was told, “It’s probably just fibromyalgia. Do Tai Chi, it should help with that.”  

Confused, I asked the doctor to spell out what fibromyalgia was, as I hadn’t heard of it before. The way it was brushed off with “do Tai Chi,” I figured it couldn’t be too serious. 

Finding information online about fibromyalgia didn’t take much time or effort. This chronic disorder causes pain and tenderness throughout the body, fatigue and trouble sleeping. One thing that stood out to me was how some people with fibromyalgia wind up on disability.  

On the one hand, I could see the seriousness of fibromyalgia and how it can change people's lives. But on the other hand, I’m told to “do Tai Chi” with no official diagnosis or test.

What if the doctor was wrong? 

PRESLEE MARSHALL

I decided to contact another medical professional about my symptoms and to get testing done to rule out other possible conditions. I called my family doctor (sweet lady, but her office is too far from me) and told her what was happening. She brought up a few ideas on what she thinks could be the problem, such as multiple sclerosis or fibromyalgia, and sent in a referral for me to see a neurologist, which was a 6-month wait.  

As my pain worsened, I knew I couldn’t wait six months, so I called the walk-in clinic again and said that if it was fibromyalgia, then I should be sent for testing to determine that. I begged for an MRI test to rule out other illnesses, which I thought would help tremendously. I knew I needed to get referred as soon as possible if I wanted answers. 

The clinic assured me that the neurologist would send me for those tests anyway, and that there was no point in doing it now. In my heart, I knew that it wouldn’t be that easy. It took some convincing, but the clinic finally agreed to send the referral for an MRI.  

‘Get Your Nails Done’ 

After a long wait, it was finally time to see the neurologist, who I thought would solve my problems. I was wrong.  

The first question I was asked was if I had anxiety. After answering yes, I could tell that he was sold on that being the problem.  I’ve struggled with social anxiety for as long as I remember. I knew that this was not the case and said that to him.  

“It’s all in your head,” he said at the end of the appointment. “If you get your nails done, you’ll feel better.”  

I was shocked and devastated. I walked into the lobby, went straight to the bathroom, and cried. I knew the pain was real, but felt hopeless, wiping away my tears to head home.  

That same month, just to prove to myself that I didn’t imagine my symptoms, I got a manicure, pedicure, massage and facial. And I still felt awful! I needed to prove to the doctor that he was wrong. I had my upcoming MRI to look forward to. 

The day came and I got the MRI. The imaging test ruled out multiple sclerosis as a possibility, as well as other conditions. I brought those results back to my family doctor, who referred me to a rheumatologist.  

After seeing the MRI results, asking me a few questions, and giving me a pressure point test, the rheumatologist diagnosed me with fibromyalgia. At that point, it had been over a year and a half since I started noticing the symptoms. I felt grateful to finally have a diagnosis. 

Word of the Year 

After such a long ordeal and less-than-ideal treatment by medical professionals, I’m on a mission to raise awareness about medical gaslighting. 

Merriam-Webster, the oldest dictionary publisher in the United States, recently picked "gaslighting" as its word of the year. There are different forms of gaslighting, which Merriam-Webster defines this way: 

“Psychological manipulation of a person… that causes the victim to question the validity of their own thoughts, perception of reality, or memories and typically leads to confusion, loss of confidence and self-esteem, uncertainty of one's emotional or mental stability, and a dependency on the perpetrator.” 

Medical gaslighting is when a healthcare provider makes a patient feel as though their perception of their own symptoms is false. A common phrase being, “It’s all in your head.” 

In my case, it was “do Tai Chi” and “get your nails done.”  

After suffering for well over a year and having medical professionals dismiss my symptoms, I realized that it was up to me to get myself properly diagnosed. 

I’d like to remind others who are struggling not to give up. It can feel like an impossible never-ending situation, but there are people in the medical field who will listen. 

Preslee Marshall, 25, is from Winnipeg, Manitoba. When she’s not busy managing her business, Preslee is traveling the world and unlocking new opportunities for her future. 

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it. Send your stories to editor@painnewsnetwork.org.

Gabapentin Won’t Cure the Opioid Crisis

By Pat Anson, PNN Editor

The risk of prescribing gabapentin (Neurontin) off-label for pain management may finally be sinking into the medical community. The latest sign is an op/ed published in JAMA Internal Medicine, which warns that gabapentin is often ineffective for pain, may raise the risk of overdose, and “will not cure the opioid crisis”    

Gabapentin is a non-opioid medication that was originally developed as an anticonvulsant to treat epileptic seizures. In recent years, gabapentin prescribing has grown 5-fold, with a growing number of physicians prescribing it “off-label” for both acute and chronic pain. Some do it as an alternative to opioids, while others prescribe it in conjunction with opioids.

“Gabapentin is often thought of as a safe alternative for pain management and may be initially enticing as a nonopioid medication, though the evidence for its efficacy in pain control is limited,” wrote lead author Raegan Durant, MD, a Professor at University of Alabama at Birmingham School of Medicine and Associate Editor at JAMA.

“With more restrictive opioid prescribing guidelines, physicians may be struggling to treat pain effectively and more frequently turning to gabapentin as a nonopioid option. However, avoidance of opioids at the expense of either more frequent use of gabapentin or concurrent gabapentin and opioids simply exposes patients to similar risks for harm often without improving the likelihood of actual pain relief.”

The warning from Durant and JAMA Associate Editor Audrey Han, MD, stems from a recent study about the “alarming upward trajectory” of gabapentin being co-prescribed with opioids.  From 2006 to 2018, overlapping prescriptions for the two medications rose by 344 percent, with many of the prescriptions being written by pain specialists.

Gabapentin is only approved by the Food and Drug Administration to treat partial seizures, nerve pain from shingles and restless leg syndrome, but is also widely prescribed off-label for fibromyalgia, neuropathy, migraine and other pain conditions – despite little evidence supporting its use.  

In addition to poor pain relief, many patients who take gabapentin report side effects such as dizziness, confusion, drowsiness, mood swings and weight gain. A 2019 study linked gabapentin to a growing number of attempted suicides.

Gabapentin may cause euphoria, feelings of intoxication, and enhance the effects of opioids and other drugs. The FDA has warned that gabapentin may cause serious breathing problems and respiratory depression, especially in older adults. A recent study found gabapentin raises the risk of delirium in seniors recovering from surgery.

First, Do No Harm

By Mia Maysack, PNN Columnist

When living in immense amounts of pain, it can be common to regularly dismiss minor inconveniences that would greatly perturb others, if not hinder them immensely.

Speaking from personal experience, I’ve permitted medical situations to worsen due to my tolerance for ailments, as opposed to promptly treating them. What’s one more thing, right?  

But when it begins to get unmanageable and my go-to treatments aren’t working, I’m often at a loss to calm a pain flare or break a pain cycle. Sometimes I am left with no other choice than my absolute least favorite thing to do — which is go to the ER. 

Recently I was severely dehydrated, the main reason I ever visit an emergency department. Because without retaining adequate water, there can be little improvement in any of my other symptoms. I essentially have given up on the pursuit of pain relief.

It’s typical that when I convey my reasons for being at the ER -- such as days or weeks of an unbreakable migraine or a never-ending cluster headache attack -- there’s judgment about my sincerity regarding conditions that don’t present themselves as a broken bone or bleeding cut.

I recall a time before I retired from nursing, when a patient came in with severe head pain. Knowing what that is like, I ensured dimmed lighting, used a soft voice, closed the blinds, and just moved in a way that I’d appreciate if I was the one lying in the bed. Which is far more often than I’d like.   

A colleague stormed in, turned on the lights and basically shouted at the patient. He later conveyed a disbelief for the patient’s claims -- even though the oath we took includes trusting discomfort as being just as the patient describes it.

The fact of the matter is that no one is able to fully comprehend another person’s pain. And it’s not up for any of us to have a final say on what we don’t personally experience.   

For years, providers have been up in arms regarding the misuse of opioid medication, and as a result are trying to over-correct a mistake that was never the patient’s fault. It’s now impossible for many of us to receive adequate pain relief.   

This has led to a distrust in the healthcare system and is also playing a large role in the number of lost lives we’re seeing.  One of the leading causes of death is suicide. And one of the leading causes of disability is depression. There’s definitely no shortage of reasons to feel down. What’s occurring in our world is cause for chronic sadness. 

As I sat there in the ER with my shades on, while picking up on their shade, I had to use all my might to explain why I was there – telling them my history and answering their questions. There are no words to adequately explain what it’s like to go through inquisitions like that so many times. To have hundreds of appointments, spend countless hours on the phone or in waiting rooms, and fighting for a proper diagnosis. Not to mention all the trial and error treatments, and the constant “permission slip” signing of authorizations just to be seen.  

Having been through it for as long as I have, it has caused its own form of trauma, something I believe is underappreciated. There are moments when I’m not even able to bring myself to enter a medical clinic due to the impact of things like being stereotyped, not believed or even helped. 

This could obviously lead anyone to seek out some sort of way to assist or soothe on their own. That includes, but isn’t limited to, checking out of their own physical existence. I’ve felt pushed to contemplate that a number of times, which I’m not ashamed to admit. Because this needs to be talked about more.   

The healthcare system often fails to such an extent that people are left to feel as though they have no other choice than to find an exit. If only things were set up to truly be concerned about our well-being. Then suicide prevention would look a lot like harm reduction, in the form of providing basic needs like affordable housing, food security and access to mental health resources.  

The medical-industrial complex can lead a person to believe their life does not matter. I live on in spite of it and to honor those who are gone.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

Pain Sufferers Are Unfairly Stigmatized

By Marimée Godbout-Parent, University of Quebec

Imagine living with pain every day for months, or even years — pain that is so intrusive, it disrupts every day of your life. Unfortunately, this is the daily reality of millions of people living with chronic pain. And all too often, they find their condition being stigmatized or even denied outright.

As a doctoral student in the epidemiology of chronic pain, I have the opportunity to work with patient partners. Given the high prevalence and multiple impacts of this disease, it is high time we started working to change attitudes and confront the prejudices that surround it. 

Before discussing chronic pain, let’s start at the beginning. Is pain always a negative thing? Of course not. Pain is essential to our proper functioning. It acts as an alarm system to warn us of danger.

For example, if we were to accidentally put our hand on a hot stove top, a pain message would be sent to our brain. Before we even had time to think about it, we would remove our hand from the hot surface, avoiding an intense burn in the process. This pain provides us with the reflexes we need in order to avoid the worst situations.

Pain can also last a little longer. This is the case, for example, after an injury, an operation or an infection. This pain will often resolve itself after a normal healing cycle or disappear with the help of treatment. This is called acute pain. Short-term pain like this is perceived more as a symptom.

Chronic Pain Is a Disease

When pain persists beyond the normal healing time, it is no longer considered simply a symptom, but a disease in its own right. This is called chronic pain. Chronic pain is defined as pain that persists for a minimum of three months. Yet, for the vast majority of people living with this disease, the pain persists for several years.

In these people, the pain message is somehow missing. It is no longer present to warn us of dangers, but becomes a burden on its own. Chronic pain can occur as a result of cancer, an accident, or after surgery. Unfortunately, sometimes we are unable to find the cause. This makes it difficult to treat.

Although this disease is not widely recognized, it is estimated to affect about 20 per cent of the Canadian population. Considering that our population in 2022 is estimated to be close to 39 million, this would mean that approximately 7.5 million people are living with chronic pain. For the purpose of comparison, 7.5 million Canadians is equivalent to the entire population of Québec. It’s an impressive and worrisome number.

In addition to affecting a large portion of the population, chronic pain causes more than just physical pain. The disease affects the daily functioning, psychological well-being, quality of life, social life and work of the people afflicted by it.

Imagine having so much pain that it reduces your ability to work, play with your children, see your friends or concentrate and even affects your ability to carry out everyday tasks. Despite the person’s desire to stay active, the body just can’t keep up. So it’s not surprising that consequences such as fatigue, frustration, sadness, anxiety and depression follow. The constant overlap between physical, psychological and social difficulties creates deep distress in this population.

Facing Prejudice

Despite the significant impacts associated with it, chronic pain remains largely stigmatized. Indeed, negative attitudes and beliefs that people living with chronic pain have become dependent on their medications, that they are exaggerating the severity of their condition, are just lazy or do not want to help themselves are widespread.

Chronic pain is a very real disease.

So, knowing the multiple consequences and prevalence of chronic pain, why is there still so much prejudice and stigma towards those who suffer from it?

The question remains unanswered. For some, what we cannot see simply does not exist. Because pain is an experience that varies from person to person, because we don’t have a specific tool for detecting it or because we can’t necessarily see it, pain can seem invisible. We have a harder time feeling sympathy or understanding for things that cannot be explained medically with medical tests or X-rays.

So, despite the many explanations offered by patients, they often have to deal with prejudices from health professionals, their entourage or the general population. Many people living with chronic pain feel that their pain is not understood by their friends, family, employers or even their health-care professionals, which adds to their feelings of helplessness, sadness and anger. In addition to dealing with the difficulties that chronic pain brings, these comments place an inestimable burden on sufferers.

Francine, who has been living with chronic pain for 15 years, regularly receives these types of comments from her family and friends:

“Well, you’ve only been walking for 10 minutes, you can do more. Just try harder.”

Sylvie, who has lived with chronic pain for 17 years, has to deal with her doctor’s comments:

“You are the only patient I have not been able to relieve with cortisone shots in 40 years, so perhaps you should consult a psychologist instead.”

These phrases, which can sound harmless to some, are often loaded with meaning for those who hear them on a daily basis. Accepting chronic pain as a disease is an important and difficult step. It should not be coupled with such pejorative comments.

Without being experts in the field, we can all play a role, in one way or another, in the lives of these people. Offering an active and understanding ear, not making quick judgments and acknowledging their condition is already a huge step in the right direction.

Support and communication with those around you are elements that should not be neglected and can certainly make a positive difference.

Marimée Godbout-Parent is a doctoral student in health sciences research at the University of Quebec in Abitibi-Témiscamingue. She has received funding from the Canadian Institutes of Health Research.

This article was written in collaboration with Sylvie Beaudoin and Christian Bertrand, patient partners. It originally appeared in The Conversation and is republished with permission.

We Need To Do a Better Job Educating the Public About Chronic Pain

By Carol Levy, PNN Columnist

It seems the pain community is so sharply focused on opioids that we tend to ignore what may be a more important issue: getting the public to understand chronic pain.

I hadn’t given it much thought, but a recent conversation with a friend brought it home to me.

“Jennifer” believed that someone with gender or sexual identity issues could be helped through talk therapy, mindfulness and relaxation techniques. Basically, anything that would take their minds off their struggles with sexuality.  

I told her people in pain get some of the same suggestions.

“What you're saying reminds me of what many people say about those of us in chronic pain, that psychotherapy, mindfulness and relaxation techniques can relieve our pain or even cure it. In reality, they don’t,” I said.

“Oh yes, they can,” Jennifer replied. “You have pain management doctors who offer mindfulness, psychotherapy and relaxation techniques. So, you do have cures.”

I shook my head, somewhat in sorrow.

“No, people who have incurable disorders like mine, trigeminal neuralgia, or other painful diseases like CRPS, Ehlers Danlos, lupus or multiple sclerosis won’t be helped by mindfulness or talk therapy. Those types of things don’t end the pain or cure the disease.”

To my amazement, this woman who holds her convictions very dear, replied, “You just taught me something. I didn't know that.”

And why should she? It is rare, if ever, that we hear chronic pain conditions called by name. The media doesn't do it, and we don’t usually hear or say it in general conversation. The name of the disease or disorder, and the level of pain they cause, usually go unmentioned.

We do hear about back pain, knee pain and other “aches and pains” that can be helped by braces, heat therapy, relaxation, and so on -- which helps further the belief that chronic pain is easily treatable. That is not to say back pain can’t be as debilitating as other disorders, but it is so common that it is taken for granted.

I think some of the blame falls on us. Many people think we act like addicts when we clamor for opioid medication. We resist efforts to reduce the dose and refuse to consider other therapies, many of which we’ve already tried.

We ignore the reality that we do not have a “right” to opioids. We have the right to get healthcare when we go to the doctor, but they have the right to decide what therapy and medications they will prescribe, if any.

As long as we spotlight our need for opioids, while ignoring the public’s lack of knowledge about painful diseases and disorders that can’t be cured, the more I fear we will continue to be ignored and disbelieved. And the more we’ll hear about talk therapy and mindfulness.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

Blacks and Hispanics More Likely to Develop Chronic Back Pain

By Pat Anson, PNN Editor

Chronic lower back pain is the leading cause of disability worldwide, with an estimated 72 million people suffering from it in the United States alone.   

New research suggests that Black and Hispanic Americans are significantly more likely to develop “high-impact” lower back pain than Whites. High impact pain is chronic pain that lasts at least six months and is severe enough to interfere with daily life or work activities.

Researchers at Boston Medical Center analyzed health data for over 9,000 patients experiencing acute lower back pain, who were being treated at primary care practices in the Baltimore, Boston, Pittsburgh and Salt Lake City areas.

After six months, patients who were Black (30%) or Hispanic (25%) were more likely than White patients (15%) to develop high impact chronic lower back pain. The Black and Hispanic patients were more likely to be younger, female, obese, have Medicaid insurance, and at higher risk of disability. They were also about half as likely to be prescribed opioids than Whites after their initial visit to a doctor.

“Our study has highlighted both a concern in the absolute number of patients with acute low back pain who develop chronic low back pain and concerns about racial and ethnic disparities in outcomes,” said lead author Eric Roseen, DC, director of the Program for Integrative Medicine and Health Disparities at Boston Medical Center.

“High-impact chronic pain has a negative impact on the lives of millions of Americans, particularly Black Americans, yet possible and significant causes of racial and ethnic disparities in long-term pain outcomes remain understudied and largely unaddressed. The disparities that emerged in this study shed light on the direct correlation among lived experiences, physical, and mental health, which must be addressed in order to improve patient outcomes.”

Roseen and his colleagues reported in the journal Pain Medicine that the risk of developing high-impact chronic pain was highest among Black women. They attribute that partially to socioeconomic reasons, suggesting that racial and ethnic differences in health insurance or neighborhood resources may impact the long-term outcomes of patients with new episodes of low back pain. 

Getting effective treatment for low back pain is problematic, regardless of race or ethnic group. A recent Harris Poll of over 5,000 U.S. adults found that over a third of those with chronic low back pain have never been told by a healthcare professional what causes their pain. Nearly half said they’ve experienced back pain for at least five years.

The survey found the typical back pain sufferer had sought relief from at least three different healthcare providers. About one in five had epidural steroid injections, which were rated as one of the least effective treatments for chronic low back pain. Opioid pain medication was rated as the most effective treatment, slightly ahead of physical therapy, chiropractic care and acupuncture.

My Story: How Opioid Therapy Saved Me and My Family

By Kim Halvorson, Guest Columnist 

I have had reoccurring pain episodes since I was 16 years old.  The one and only doctor we had on the Flathead reservation in Montana created even more problems for me than he solved. First, he offered me opioids (it was the 70’s) and wanted to inject the knots in my body with cortisone, without any diagnoses. My mother and I decided against his advice and began nutrition, exercise and therapy -- both mental and physical.  

When I was almost 30, the same doctor offered me a "new miracle med" that would block the pain signals in my brain. He prescribed the antidepressant amitriptyline, and I had my one and only manic episode. If he had taken any time to recognize my hyper self, maybe he would not have given me an antidepressant without any warnings about its side effects.  The strongest medicine I had ever taken, at that point in my life, was Tylenol.    

It took me a few years to recover from that total breakdown. Waking up in a psych ward is more than a little scary.  But the psychiatrist there listened to me and tried many different medications, until we landed on Klonipin and Trazodone to help me sleep. That was my answer for almost 30 years.

When my two sons were active toddlers, the pain bouts became too much.  My first opioid, at age 40, came with common sense and compassion from a wise and caring doctor. She could not find the underlying cause of my pain, but knew I was telling the truth. After all, I had said no to opioids for 25 years.   

She would write only 3 opioid scripts a year. If I needed more, then we’d have to find out what was going on inside my body. That worked for 10 years. And it taught me discipline.     

KIM HALVERSON

At age 50, I broke my back in 3 places and required daily opioids to move at all.  The doctor linked my meds to better physical function, and I was on that dose for 5 years without an increase. Opioids helped me to hold onto our house and attend my sons' games --- both of them are athletes.    

Then came the "big scare" as I call it.  When Florida lost its mind and went after the pill mills. The country over-reacted to the opioid crisis and in many places still is. The truth about Florida became a fiction about Montana and everywhere else, it seems. The pain clinic that had saved my little family for 5 years got rid of me and many other patients to protect their practice.        

For the next 4 years, a local clinic and a brave nurse practitioner bucked the system and got me half of what I needed.  It was better than nothing and I “saved up” pills by staying in bed until a game was on or some work had to be done.  Those 4 years were hard on me, and I ended up in a wheelchair and incontinent. 

I kept looking for a reasonable doctor and eventually found one. Once I was put back on the dose that worked for those 5 years, it only took a few months to regain my strength enough to face surgery and get a new artificial hip.      

The new hip was supposed to reduce my pain, but my pain level doubled. A new doctor found out why. I had scoliosis, and the surgery that was supposed to help me had locked me into pain 24/7. The first year after the new hip, a lump formed in my back and my body felt the pain I had been trying to avoid all my life.      

I know what is causing my pain now and why certain injuries were far worse than I thought they would be. That hip that looked “blown up” on an x-ray was the fulcrum of my frame, a curve in my spine and I have been wrestling with since I was 16.      

Even knowing all of this, my pain doctor felt pressured to stop helping people like me or anyone with opioids. I was abandoned, but found another doctor who just recently stopped calling himself a “pain management specialist” because of what is still happening to other doctors.    

I am already looking for the next reasonable doctor, just in case, but it is not supposed to be this way.  We shouldn’t have to fight this hard to live any kind of life.    

All of us need to join the fight. We need to start with ourselves and our support team, and then we must find allies within the medical profession and help them help us.  I will protect my three doctors completely.  I never do anything that could be misconstrued by anyone and often supply them with information to protect themselves, just in case.    

And then we all need to share our story.  Help each other with those stories.  Become our own best experts and advocates.   

Kim Halvorson lives outside Missoula, Montana.  

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it. Send your stories to editor@painnewsnetwork.org.

FDA Approves Smallest Rechargeable Spinal Cord Stimulator

By Pat Anson, PNN Editor

The Food and Drug Administration has approved a new spinal cord stimulator that’s being touted as the smallest implantable neuromodulation device of its kind on the market. Abbott’s Eterna stimulator can also be recharged wirelessly as few as five times a year, unlike other stimulators that need recharging daily or weekly.

Spinal cord stimulators (SCSs) are an invasive treatment of last resort for people with chronic back or leg pain. The devices are surgically implanted near the spine and connected to batteries placed under the skin. The implants send low-level electrical impulses into the spine to block pain signals.

Abbott says it developed Eterna after extensive studies with pain patients and healthcare providers, who wanted a smaller implant with less need for recharging.

Eterna utilizes the company’s BurstDR stimulation, which mimics the natural firing patterns of nerves to provide pain relief without the tingling sensation of other simulators.

"Abbott's low-dose BurstDR stimulation is clinically proven to reduce pain, improve people's ability to perform everyday activities, and reduce emotional suffering associated with pain," Timothy Deer, MD, president and CEO of the Spine and Nerve Centers of the Virginias, said in a statement provided by Abbott.

ABBOTT IMAGE

"Until now, it wasn't available on a rechargeable device that was this small, and that only needs to be charged a few times a year. This makes a big difference in comfort for many patients who now can have access to the best of both worlds – a small, best-in-class rechargeable device with superior stimulation therapy."

Another advantage of the Eterna SCS system is that patients with the device can still have full-body MRI scans – a critical need for those who need access advanced imaging and diagnostics. The devices can also been monitored and programmed with a mobile app.

About 50,000 SCSs are implanted annually in the U.S. and their use is growing – in part because of the belief they’ll reduce the need for opioids and other pain therapies.

A recent study found that premise to be untrue. Researchers at the University of California San Francisco School of Medicine found that pain patients with stimulators did not reduce their use of opioids, epidurals, corticosteroid injections or radiofrequency ablation compared to a control group. About a fifth of the patients experienced complications so severe the devices had to be removed or revised.

A 2018 study found that SCSs have some of the worst safety records of medical devices tracked by the FDA. An FDA review of adverse events involving stimulators found that nearly a third were reports of poor pain relief. The review also identified nearly 500 deaths linked to the devices, along with nearly 78,000 injuries and 30,000 malfunctions.

SCS’s are no longer limited to patients with intractable back and neck pain. Last year the FDA expanded the use of stimulators to include lower limb pain from diabetic neuropathy.  Stimulators are also being used on patients with Complex Regional Pain Syndrome (CRPS).

Gabapentin and Pregabalin Only ‘Modestly Effective’ for Pain

By Pat Anson, PNN Editor

A new review of clinical studies on the use of gabapentin (Neurontin) and pregabalin (Lyrica) in pain management found the drugs are only “modestly effective” and could be risky for some pain patients.

Gabapentin and pregabalin belong to a class of nerve medication called gabapentinoids, which were originally developed as anticonvulsants to treat epileptic seizures. In recent years, however, they have been increasingly prescribed off-label as an alternative to opioids in managing pain. About one in five U.S. adults with chronic pain are prescribed a gabapentinoid.  

"Treating pain has been problematic for a long time, and we're still dealing with the fallout from opioid overuse," says lead author Craig Williams, PharmD, a clinical professor at Oregon State University College of Pharmacy. "Gabapentinoids are modestly effective for certain patients; they are rarely extremely effective, and they are not effective at all for some patients because the mechanisms of the pain don't match up with the mechanisms of the drug.

"Doctors who prescribe gabapentinoids for pain should do so with their eyes wide open and be prepared to stop them if they are ineffective or cause too many side effects."

The study findings, published in the journal Drugs, found that many of the clinical trials for gabapentin and pregabalin were of short duration, had a small number of participants, and performed only slightly better than placebos in reducing pain. Many patients who take the medications also report side effects such as dizziness, confusion, drowsiness, mood swings and weight gain.

"Treating pain is about making patients more functional so they can live their lives better, and if they have to deal with adverse effects for a little pain relief, their lives may not be improving," said Williams.

Pregabalin has been approved by the Food and Drug Administration for four pain conditions: post-herpetic neuralgia (shingles), diabetic peripheral neuropathy, spinal cord injury, and fibromyalgia. Gabapentin has only been approved by the FDA for post-herpetic neuralgia.

Despite the limits on their uses, many doctors legally prescribe the drugs “off-label” for pain conditions such as migraines, back pain, post-operative pain and even dental pain. Gabapentin was once derisively referred to as “snake oil” by a pharmaceutical executive because it is so widely prescribed for so many different pain conditions, despite weak evidence.

"In addition, we found that the trials used by the FDA to approve gabepentinoids for pain indications had a couple of key structural weaknesses," Williams said. "The trials tended to be short, typically lasting one to three months, and the trials typically excluded the simultaneous use of other medications that affect the central nervous system. That's important because patients taking gabepentinoids are rarely taking them exclusively; they're often prescribed in conjunction with opioids, muscle relaxants or other epilepsy drugs."

Gabapentin can cause euphoria and feelings of intoxication, and make the effect of opioids and other drugs seem stronger. A 2019 study linked gabapentin to a growing number of attempted suicides.

That same year, the FDA warned that gabapentin and pregabalin may cause serious breathing problems and respiratory depression, especially in older adults. A recent study found that gabapentin raises the risk of delirium in older adults recovering from surgery.

5 Tips to Keep Your Pain and Stress Levels Down Over the Holidays

By Victoria Reed, PNN Columnist

Christmas is my favorite holiday, as it is for many people. Once Thanksgiving is over, I start getting excited for this once a year “season” when I get to wear my favorite sweaters, sing Christmas songs and shop till I drop! My home is transformed with decorations, lights and a Christmas tree filled with ornaments, old and new.

My mood is jovial, though the pain is still there, albeit faded into the background amid the distractions of holiday preparations.

My family has always celebrated Christmas. As a child, I remember lying in bed and being excited for Santa Claus to come. Of course, as I grew older, the anticipation and excitement waned a bit, as I eventually realized there was no Santa. However, I was always grateful for what I received and loved Christmas morning with my family. I treasure those memories from my childhood.

Though it’s a happy time for many people, the holiday season can bring stress, sadness or even loneliness to people suffering from chronic pain. It can be difficult for us to do some of the things we were once able to do effortlessly. Going to crowded stores and standing in long lines can be difficult if you suffer from back or joint pain. Fatigue can increase as well.

For some, the distraction of the holiday season might make your pain seem better, because you’re simply not thinking about it as much as you spend time with friends and family, attend holiday parties, eat delicious food, and take in the sights of Christmas. All can seem well, at least temporarily.

But for many pain sufferers, pain can actually increase over the holidays, due to increased demands on the body and the stress of shopping, entertaining and preparing holiday meals. 

I spend a good deal of time choosing gifts for my family. I also like to make gifts that have a more personal touch. But that sometimes triggers rheumatoid arthritis flares in my hands and wrists, and causes my neck and shoulders to get sore from sitting in one position for too long.

My fibromyalgia also seems to get worse as soon as the weather turns cold. I live in northeast Ohio and it is definitely not easy this time of year, but I can somehow tolerate winter weather. In fact, having snow on the ground actually contributes to that magical feeling of Christmas.

Regardless of what climate you live in, here are 5 tips to prevent your pain from worsening during the busy holiday season:

1. Shop online. This will allow you to avoid stressful traffic and crowded stores. You are also less likely to catch a cold, flu or covid when you shop from the comfort of your own home.

2. Limit gatherings to smaller groups to reduce stress and pain.

3. Eat healthier. The old saying is true: You are what you eat! You may be tempted to feast on cookies, pies and fatty holiday dishes, but you will pay a price for it. Stomach aches, sluggishness and weight gain are some of the side effects of Christmas.

4. Start shopping early and wrap your presents early. If you wrap a few gifts per day vs. all of them at once, you’ll be less tired and less sore from being hunched over. 

5. Keep exercising (if you are able), even if it’s just stretching or walking. If your muscles are tight, that tension will increase pain. Staying fit will help you navigate those long lines and crowds if you choose to shop in stores.

While the holiday season can be stressful for those of us suffering from chronic pain, taking precautions and making smart choices will ensure a fun and memorable holiday season, without the added discomfort.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Fentanyl Linked to 94% of Overdose Deaths in Massachusetts

By Pat Anson, PNN Editor

There’s good and bad news in the latest report on overdose deaths in Massachusetts. State health officials say drug deaths were down slightly in the first nine months of 2022, compared to the same period last year. But deaths involving fentanyl – most likely illicit fentanyl -- rose to 94% of opioid-related overdoses, a record high.

Massachusetts was one of the first states in the U.S. to expand the use of toxicology tests to look for the presence of certain drugs involved in opioid overdoses, instead of just relying on death certificates and coroner reports. That makes its overdose data more accurate.

In the first nine months of 2022, there were 1,340 confirmed opioid-related overdose deaths in Massachusetts, and officials expect that to reach about 1,696 deaths by the end of the year. That’s 25 fewer deaths than in 2021, a decrease of 1.5 percent.

Nationally, drug overdose deaths also appear to be slowing. The CDC estimates there were 107,735 U.S. overdose deaths in the 12-month period ending in July 2022, down from over 110,000 deaths in the 12-month period that ended in March, 2022. Illicit fentanyl, a synthetic opioid about 50 to 100 times more potent than morphine, is involved in the vast majority of those deaths.

Deaths in Massachusetts involving a fentanyl have been rising for over a decade, from nearly 42% of opioid-related overdoses in 2014 to 94% this year. Over that same period, deaths involving prescription opioids such as oxycodone and hydrocodone have steadily declined from about 35% to 11% of overdoses in 2022.

More people are now dying in Massachusetts after ingesting fentanyl, cocaine, alcohol or benzodiazepines such as Xanax than from pain medication. Deaths linked to opioid medication fell by 30% in just one year, which coincides with a steep decline in prescriptions in Massachusetts over the past decade.   

Drugs Involved in Massachusetts Opioid-Related Overdose Deaths

Massachusetts Department of Public Health

“Every life lost to opioid overdose is its own tragedy,” Public Health Commissioner Margret Cooke said in a statement. “With this report, we are encouraged by the decrease, however modest, in opioid-related overdose deaths in Massachusetts so far this year. We will continue to build on our data-driven and equity-based public health approach as we address the impacts of the opioid epidemic and the COVID-19 pandemic, especially among vulnerable populations.”

Health officials say the illicit drug supply in Massachusetts is “heavily contaminated” with illicit fentanyl, which is frequently used in the manufacture of counterfeit medication sold on the street.

Pharmaceutical fentanyl is used as a surgical analgesic and in patches and lozenges to treat severe pain, but only small amounts are diverted for abuse. The DEA estimates that only 0.01% of prescription fentanyl is diverted for use by someone it was not intended for.

It's important to note that the presence of a drug found in a toxicology screen doesn’t mean it was the cause of someone’s death. Multiples substances are frequently involved in opioid overdoses, and the official cause of death is a clinical decision made by coroners and medical examiners.

Toxicology tests alone also don’t reveal if a prescribed drug was intended for the decedent, or if it was bought, stolen or borrowed by them. An earlier study of drug deaths in Massachusetts found that only 1.3% of overdose victims had a prescription for the opioid medication involved in their deaths.

The vast majority of patients prescribed opioids use them responsibly and don’t go doctor shopping. The Massachusetts Department of Public Health estimates that only 0.6% of patients who were prescribed an opioid this year had an “activity of concern,” such as getting prescriptions from multiple providers or having them filled at multiple pharmacies.

Second Patient Dies After DEA’s Suspension of Doctor’s License

By Pat Anson, PNN Editor

A second chronic pain patient has died as a result of the DEA’s suspension of a California doctor’s license to prescribe opioids pain medication. 42-year Jessica Fujimaki died Saturday, December 10th at her home in Arizona, apparently due to complications caused by opioid withdrawal.

Jessica lived with Ehlers-Danlos Syndrome (EDS), arachnoiditis, stenosis and other chronic conditions that cause severe, intractable pain and left her bedridden.

In the past year, she found relief through injections of the opioid hydromorphone every two hours, which allowed her to walk, have some quality of life, and take care of her husband and two children.   

That came crashing to an end in early November, when she learned that her pain specialist, Dr. David Bockoff, had his license to prescribe opioids and other controlled substances suspended by the DEA.

“She was frightened, because she knew what was going to happen to her if she didn’t have that medication,” said Tad Fujimaki, Jessica’s husband. “There’s no way she could live without it.”

The Fujimakis were unable to find another doctor in Arizona willing to treat Jessica, and her health steadily deteriorated as opioid withdrawal set in.

In desperation, they made two trips to Mexico to purchase oral opioids there, but were uncertain of the quality of medications they received.

JESSICA FUJIMAKI

A last-minute prescription for injectable hydromorphone from an out-of-state doctor failed to stop her cascading health problems. Her exact cause of death has yet to be determined, pending an autopsy.

Had the treatment that Jessica received from Dr. Bockoff continued, Tad believes his wife would still be alive today. He blames the DEA for her death.   

“Absolutely. DEA, government, all of them. If they didn’t stop the medication, if Jessica was still getting medication from Dr. Bockoff, this would have never happened,” he told PNN.

Like many patients with EDS, Jessica wasn’t diagnosed with the genetic connective tissue disease until well into adulthood. In 2020, when the Fujimakis lived in Hawaii, she had an epidural steroid injection for leg pain that made her condition far worse. Seeking better treatment, the family moved to the mainland.

“The one mistake we made was to move to Arizona,” said Tad, explaining they could find no doctors to treat Jessica near their Phoenix home.  

“Because she was too complicated a patient. They knew they can’t prescribe hydromorphone,” he said. “If we knew the state of Arizona was an anti-opioid state, then we probably wouldn’t have moved from Hawaii to Arizona. We’d have picked a different state.”

Like many other “opioid refugees” on high doses, Jessica searched for doctors out-of-state, eventually finding Bockoff, who has practiced medicine for over 50 years in California without any record of disciplinary action or complaints.

“I have no comment. A very unfortunate tragedy,” Bockoff replied in an email when asked about Jessica’s death.  

THE FUJIMAKI FAMILY

Another Bockoff patient who lived with intractable pain ran out of medication and died one week after the license suspension. Danny Elliott and his wife Gretchen were so distraught over his inability to find another doctor and get opioid treatment that they committed suicide in their Georgia home.

‘Imminent Danger to Public Health’

Why the DEA suspended Bockoff’s license is still not entirely clear. DEA agents searched his office in September, 2021 and confiscated the medical records of 240 patients, which they later returned.

Although a DEA notice of the suspension – signed by DEA administrator Anne Milgram -- states that Bockoff posed “an imminent danger to the public health,” his license was not suspended until 14 months after the initial search, when he was accused of violating the Controlled Substances Act when treating five patients.

Those allegations primarily deal with improper record-keeping and prescribing high doses of opioids that could potentially be diverted or abused. But there is no indication that any harm was caused to the five patients while under Dr. Bockoff’s care, or that they sold or abused the opioids he prescribed.

While Bockoff appeals his suspension, 11 of his patients have hired a lawyer and tried – unsuccessfully so far -- to sign on as intervenors, so they could participate in DEA hearings on the case. One of them was Jessica Fujimaki.

“With the suspension of Dr. Bockoffs license, I am left without care again. It took over a year to find the protocol that work for me and allowed me to have some quality of life,” Jessica wrote in a statement to the DEA.

“I was very fortunate to find Dr. David Bockoff, who accepted me as his patient and has been able to treat me in accordance with the treatment protocol that works for me. This treatment protocol changed my life and gave me hope,” she wrote.

“I am able to walk most days unless I am in a huge flare. Without Dr. Bockoff's care and prescribed medication, I would be bedbound, unable to walk, unable to function, and certainly unable to care for my children.”

A DEA administrative law judge declined to let Jessica and the other patients participate in a pretrial conference on November 28, but has not officially rejected or approved their motion to intervene in future hearings. The patients are considering other legal avenues.

Whatever happens, it’s not likely to happen in time to prevent future tragedies. Under DEA rules, doctors have 30 days to appeal their license suspensions. Legal experts say the process can then take months or years to resolve – too long for patients like Jessica and Danny Elliott, who suffered needlessly and didn’t have time to wait.

There Is Another Drug Reform Bill the Senate Must Pass

By Michael C. Barnes, Guest Columnist

After last month’s midterm elections, the U.S. Senate passed the Medical Marijuana and Cannabidiol Expansion Research Act. The House had passed the bill in April, and President Biden signed it into law on December 2. The new law has been described as “modest” because it mostly facilitates research on marijuana and cannabidiol to support the development of medications for approval by the Food and Drug Administration (FDA).

The law also eliminates a longstanding regulatory roadblock that has prevented marijuana research; hindered the development of marijuana-derived, FDA-approved medications; and led to 37 state-regulated markets for marijuana products that do not meet federal consistency, purity, and potency standards. New research can be expected to yield marijuana-derived medications that the FDA can approve.

There is another regulatory burden that the Senate must eliminate before the end of this year. This change in federal law would also be modest, but it would facilitate access to treatment for opioid use disorder (OUD), which is essential amid the nationwide fentanyl poisoning crisis. S. 3257 would expand the time health care providers can hold long-acting, injectable buprenorphine (an FDA-approved medication for OUD) from 14 days to 60 days. It’s that simple. But like the new marijuana research law, the modest change will make a significant difference.

In the 12 months that ended June 30, 2022, 102,842 people died of a drug poisoning. Of those, 69,150 involved synthetic opioids, predominantly illegal fentanyl. Facilitating access to evidence-based treatment for OUD is more important now than ever. Changing the law cannot wait until the next Congress gets up and running.

S.3257 would amend the Controlled Substances Act, which currently requires that a health care provider administer injectable buprenorphine OUD medication to the patient named on the prescription within 14 days after the medication was delivered to the provider. The supposed purpose of the 14-day limit is to prevent the diversion of the medication to the illicit market.

But in 2020, the Government Accountability Office (GAO) reported that “all of the provider groups GAO spoke with said that diversion of injectable … buprenorphine is unlikely, and representatives from three of the six provider groups said that the design of these formulations reduce opportunities for diversion due to how they are administered.”

For patients and providers, the 14-day limit is too short considering the coordination required to facilitate injectable buprenorphine prescribing, insurance coverage and payment, delivery and receipt, and appointment scheduling and attendance. Sixty days are necessary to ensure that medication administration may take place at a time when the patient, provider, and medication are available.

Additionally, the 14-day limit wastes valuable health care resources and places patients’ recovery and lives at risk. For example, if an insured patient is not able to attend a medical appointment on or before the 14th day after the injectable buprenorphine was delivered to his or her provider, the medication must be disposed of.

It is unlikely that an insurer would pay for a replacement product, and it is common for patients not to be able to pay for medications out of pocket. As a result, a patient may be forced to go without a week or months’ worth of medication for OUD. This situation can put the patient at risk for a recurrence of OUD symptoms, active substance use, poisoning by illicit substance, and death.

In June, the House of Representatives passed H.R. 7666 with broad bipartisan support. Section 264 of H.R. 7666 contains a provision expanding the 14-day limit to 60 days.

In passing the marijuana research act, the Senate proved itself willing and capable of enacting modest yet meaningful drug reforms during its lame-duck session. To prevent drug poisonings and avoid wasting lifesaving medications, the Senate must do so again by expanding the 14-day limit to 60 days.

Michael C. Barnes is the managing attorney for Sequel Health Law. He serves as counsel to Aimed Alliance, a not-for-profit health policy organization.

The goal of Aimed Alliance is to create a society in which consumers can make informed and individually appropriate decisions about their health care, without those decisions being overridden by third parties.

DEA Finalizes Cuts in 2023 Opioid Supply

By Pat Anson, PNN Editor

The U.S. Drug Enforcement Administration has finalized plans to further reduce the supply of oxycodone, hydrocodone and other commonly prescribed opioids by about 5 percent in 2023, ignoring complaints from patients and healthcare providers that a seventh consecutive year of cuts in opioid production would cause shortages and interfere with the treatment of pain patients.

In a notice published in the Federal Register, DEA said the reduced supply of opioids in 2023 would be “sufficient to meet all legitimate needs.”  The agency has broad legal authority under the Controlled Substances Act (CSA) to establish annual production quotas for drug manufacturers, based on estimated medical, scientific and research needs.  

The 5% production cut in 2023 for Schedule II opioids is not as steep as in prior years, but continues a trend that began a decade ago. Since their peak in 2013, DEA production quotas have fallen by 65% for oxycodone and 73% for hydrocodone.

It’s hard to find any evidence that reducing the opioid supply prevents overdoses. Prescription opioid use has fallen by nearly 50 percent in recent years, but drug deaths have climbed to record levels, fueled primarily by street drugs made with illicit fentanyl.

‘You’re Just Going to Kill People’

Over 350 people and organizations commented on the DEA’s new quotas during a 30-day public comment period that ended in mid-November. Many fear that further cuts in the opioid supply will lead to more suffering and suicides due to untreated pain.

“The DEA should not impose further reduction in the supply of Rx opioids for 2023. There is no correlation between prescriptions and diversion. All the street drugs out there come from Mexico by way of China, NOT a pharmacy,” wrote Anne Hoch. “The DEA are acting as doctors and determining how a doctor does his or her job. The government has to get out of healthcare and respect patient privacy again.”

“Stop reducing production of opioids. There already is a large shortage of pain meds. Why in the world are you reducing AGAIN??! Stop torturing Americans with your disastrous policies. It's quite clear that access to prescription opioids is a problem, so I'm not at all sure what you think you'll gain from reducing production -- you're just going to kill people,” wrote Amber Bullington.

Several people also pointed out that the CDC recently updated its opioid guideline to emphasize there is no hard limit on doses and to give doctors more flexibility in prescribing opioids.

“I believe that the DEA must take into consideration these revised Guidelines, because physicians will no longer be constrained to any arbitrary, hard and fast limit. More, rather than less, opioid daily dosages could be prescribed to certain individual patients who have high impact, intractable pain,” said an anonymous poster.

But the DEA said it would proceed as planned and take a wait-and-see approach to the revised guideline before making any changes to its aggregate production quotas (APQ).

“DEA will consider the impact of CDC's revised guidelines over time, in determining whether DEA may need to publish a revision to the currently proposed APQ values during the 2023 calendar year, when there is sufficient data to provide an understanding of the impact of the guidelines on the actual prescribing as practitioners seek to implement this guidance,” wrote DEA Administrator Anne Milgram, a former Attorney General of New Jersey who has no experience in medicine.

“In addition, DEA's regulations do not impose a maximum limit on the amount of medication that may be prescribed on a single prescription. DEA has consistently emphasized and supported the authority of individual practitioners under the CSA to administer, dispense, and prescribe controlled substances for the legitimate treatment of pain within acceptable medical standards.” 

That comment about no “maximum limit” on prescriptions and the DEA supporting the “authority of individual practitioners” would come as a surprise to many doctors. For years, DEA task forces have targeted doctors who prescribe high doses of opioids deemed to be “outside the usual course of professional practice.” 

Last month the agency suspended the DEA license of Dr. David Bockoff, a California doctor who was treating 240 pain patients, including some from out-of-state who need high doses but were unable to find a local provider. Although Bockoff has practiced medicine for 53 years and has no record of any disciplinary action or complaints with the state medical board, the DEA alleged that he was “an imminent threat” to public safety. Milgram herself issued the order suspending Bockoff’s license to prescribe opioids and other controlled substances.

Within a week of the suspension, a distraught high-dose patient and his wife died in a double suicide in Georgia because he was unable to find another doctor willing to treat his pain. PNN has learned of a second Bockoff patient who died this past weekend, apparently from complications caused by opioid withdrawal.