The Best Advice for Someone New To Chronic Pain: Sleep

By Crystal Lindell

If you’re new to chronic pain, try your best to get some sleep. 

Whether you use a pill, a sick day, a babysitter, or some combination of all three — your first priority is to get a really good, restful night of sleep. 

Nothing can be dealt with before that happens, but everything will feel more manageable when you wake up. 

As someone who writes about chronic illness, people often reach out to me when they or someone they love suddenly finds themselves dealing with a new health issue. And my first piece of advice is always the same: YOU NEED TO SLEEP. 

Chronic illness – especially chronic pain – has a way of eating away at your sleep like a party full of toddlers grabbing chunks of birthday cake. Even if you lay in bed all night long, true sleep can easily evade you. 

Lack of sleep will make you crazy so much faster than you think it will. It will make every problem you face impossible. And it will make every interaction you have with humans or pets infuriating. 

When I first started having chronic pain at age 29, I did not understand any of this. At the time, I was working two jobs, with one requiring a daily hour-long commute each way. I was secretly proud to be living on as little sleep as possible, long before I started having serious health issues.

I thought I was the type of person who could easily live on little-to-no sleep. But there’s a big difference between getting five hours of sleep, going to work, then coming home to crash for 10 hours versus getting less than two hours of sleep a night for multiple nights in a row.

I didn’t realize how much sleep my new pain was stealing from me. And I didn’t realize just how quickly it would start destroying my will to live.

During one early pain flare, before I had any of the tools I have now to manage such things, I was awake for like five days straight. I say “like” because that week is kind of a traumatic blur. It was only a few days, but it felt like a month. 

After one of the first rough nights, I showed up at my primary care doctor’s office before it even opened, begging for help. Another day, I went to an urgent care clinic. By the end of the week, I was laying on my living room floor planning ways to kill myself. 

It doesn’t take long to reach really dark places when you aren’t getting enough sleep. And lack of sleep will make almost any physical pain worse too. Combine those two things, and it’s easy to mistakenly start convincing yourself that being alive is the wrong choice. 

Eventually, a pain doctor gave me a strong antidepressant and sleeping aid called amitriptyline, and I finally got some real rest. Of course, like any strong sleep aid, it came with a lot of side effects. It made me very tired in the morning, sometimes making it impossible to get up for work. It made me gain unwanted weight. And it left me groggy throughout the day. 

But after going days without sleep, those were all side effects I was happy to accept. 

Bodies need the power reset that sleep is supposed to provide, both mentally and physically. When you don’t get that, things get scary glitchy fast.

So if you’re new to chronic pain, do whatever you need to do to get some sleep. And if you aren’t able to get the sleep you need with the tools you have at home, do not hesitate to go to the doctor or even the emergency room. Sleep is that important. 

After a few nights of real rest, then you can start to tackle the rest of the ways your newfound health issues are affecting you. Because trust me, there'll be plenty of time for all that in the morning. 

Patients and Providers Say Cannabis Helps Reduce Opioid Use

By Crystal Lindell

More than half the pain patients certified in New York state’s medical cannabis program say they’re using cannabis as an alternative to opioid medication. 

That’s great news for patients who see real benefits from cannabis, but we have to be careful to avoid further demonizing opioids when data like this is released. Using something as an alternative doesn’t show that it’s necessarily more effective or more helpful. Often, it just means that something is more accessible. 

The data comes from the New York State Office of Cannabis Management’s 2023 Patient and Provider Survey Report, which was recently released. This was a large survey that collected responses from 10,781 patients and 265 providers enrolled in the state’s medical cannabis program. 

“Findings from both the patient and provider surveys demonstrate that medical cannabis is effective for pain management and has the potential to reduce the use of opioids,” the report found.

About 57% of the patients were pain sufferers, making pain the top condition for using cannabis, followed by post-traumatic stress disorder (24%), neuropathy (19%), spasticity (11%), rheumatoid arthritis (11%), inflammatory bowel disease (10%) and cancer (8%).

The survey found that 66% of patients think medical cannabis helped reduce their use of opioids for pain management.

The providers were largely in agreement, with 83% saying “medical cannabis should be used to reduce the use of opioids for pain management” and 75% saying cannabis poses less risk than opioids. 

However, this is where I start to raise my eyebrow a bit. 

It makes me nervous that so many providers see cannabis as being safer than opioids. The fact that 25% of them don’t is also a telling statistic. It means the data on this is unclear.

All substances have side effects. Both patients and providers understand this. In a just world, patients should be able to make the choice about which substances or medications they use, after factoring in their own preferences for what side effects are acceptable as a tradeoff for pain relief. 

Even if it was proven that cannabis is significantly safer than opioids for managing pain, that doesn’t mean it’s just as effective as opioids. Personally, I don’t find cannabis to be very effective at all for treating my pain. I also really dislike how sleepy it makes me. For my life and my needs, opioids remain a much better option. 

I’m lucky enough to have a recurring prescription for opioid medication. But for patients who can’t get an opioid prescription, they don’t truly get a choice or “alternative.” Cannabis may be their only legal option. 

The New York State report also shows me that it’s long past time to make cannabis legal at the federal level. It’s clear now that classifying cannabis as an illegal controlled substance never had any foundation in health concerns. Clearly, cannabis can help treat a large number of medical conditions. And many people get health benefits from using it. 

A lot of drugs that are classified as harmful controlled substances can still be obtained by prescription. And some that are not “controlled” are potentially more dangerous than cannabis. That doesn’t make any sense, but that’s how the system is set up under the Controlled Substance Act. 

The way that cannabis has been slowly legalized across the country should make us take a long look at all of our drug laws. There are many illegal substances, such as psychedelics, that could potentially help people manage health conditions – but only if they had access to them in the same way most Americans can now access medical or recreational cannabis. 

If nothing else though, cannabis’ slow legalization has given me some hope. I can remember even 25 years ago, being in college, listening to guys in dorm rooms ramble on about how cannabis would be legalized someday. I confess I didn’t believe them. At the time, it felt impossible. 

Turns out, I was wrong. Now I just hope we don’t stop at cannabis. 

FDA Flip Flops (Again) on Kratom

By Pat Anson

The Food and Drug Administration can’t seem to make up its mind about kratom.

Just 10 days after publishing an initial notice in the Federal Register seeking public comment on a study about the risk and safety of kratom and psychedelic substances, the agency abruptly withdrew its request.

“FDA no longer intends to proceed with the proposed study as described because circumstances occurred necessitating changes to the scope of the study,” the FDA said in a brief statement, without explaining what “circumstances” changed.

Kratom is an herbal supplement made from the leaves of a tree in southeast Asia, where it has been used for centuries as a stimulant and pain reliever. In recent years, millions of Americans have discovered that kratom can be used to treat pain, anxiety, depression and addiction. The FDA takes a dim view of that, because it has not approved kratom for any medical condition.

“Notably, kratom's unapproved status does not appear to have diminished its growing popularity, with people using kratom to reportedly ‘treat’ certain health conditions. Its chemical affinity with opioid and use among patients with opioids use disorder as a ‘treatment’ is of public health concern for the Agency,” the FDA said in its August 2 notice. “The use of this substance, that has yet to be tested and determined safe for use in human population by the Agency, is a significant concern.”

The FDA seems particularly interested in studying how consumers buy kratom or psychedelic substances, what benefits they get from them, and whether “marketing strategies nudge purchase and affect use demand.” The FDA hired a market research firm, the Brightfield Group, to conduct an “Exploratory Behavioral Economics Study” to see what motivates kratom and psychedelic users.

The agency could have saved itself some time and money by looking at the findings from a PNN survey of 6,150 kratom users. Over 90% said kratom was “very effective” at treating pain and other medical conditions, and 98% didn’t believe kratom was harmful or dangerous.

‘Embarassing Mistake’

Kratom advocates say the FDA’s withdrawal of the study notice was the “latest embarrassing mistake” the agency has made about kratom.

In 2016, the FDA joined with the DEA in proposing that kratom be classified as an illegal Schedule I controlled substance, a request that was later withdrawn due to the “significant risk of immediate adverse public health consequences” if kratom was banned nationwide. A top federal health official said FDA staff based their scheduling request on “embarrassingly poor evidence & data.”

“The FDA’s few anti-kratom staff are repeatedly undermining the Agency’s credibility on harm reduction strategies,” Mac Haddow, Senior Fellow on Public Policy at the American Kratom Association (AKA), said in a statement. “The FDA remains trapped in the web of their own making that unfairly demonizes products like kratom and psychedelics that, when properly used, are helping people who struggle with addictions and mental health issues and that are saving lives.”

Others disagree about kratom’s safety. The Brightfield Group is tracking social media posts about kratom and is reportedly seeing more online discussions about its risks and addictive properties. While hundreds of deaths have been linked to kratom use, most cases involve other drugs and illicit substances, making it difficult to determine the exact cause of death.  

“Describing kratom as a ‘benign botanical supplement’ is dangerously misleading. Kratom has documented risks, including addiction potential. Downplaying these risks does a disservice to consumers,” says attorney Matt Wetherington, who represents the family of Ethan Pope, a Georgia man who died after consuming a potent kratom extract called Black Liquid Kratom, made by Optimized Plant Mediated Solutions (OPMS).  

Pope’s family has filed a wrongful death lawsuit against OPMS, as well as the AKA and other kratom vendors. The FDA issued a recent alert urging people not to ingest Black Liquid Kratom, a warning the AKA has characterized as a “coordinated effort” by trial lawyers to drum up more clients for a class action lawsuit.  

“The AKA's overall combative tone towards the FDA and trial lawyers is counterproductive. Constantly framing regulators as enemies undermines opportunities for constructive dialogue that could actually benefit kratom users,” says Wetherington. “No one but the FDA actually knows why they withdrew the request to study. Speculating beyond their stated reason is a fool’s errand.”

A New Study of Opioid Addiction Only Muddies the Water Further

By Pat Anson

Over the years, hundreds of studies have been conducted to determine how common it is for a pain patient on long-term opioid therapy to become addicted. Estimates range from less than 1% to more than 80% of patients developing opioid use disorder (OUD), also known as problematic pharmaceutical opioid use (POU).

The wide variation in estimates is largely due to conflicting definitions, terminology, study design and biases. Is a patient misusing or abusing prescription opioids? Do they show signs of dependence or withdrawal? It literally depends which study you read.

New research that tries to settle the matter may have only muddied the water further.

A team of researchers at the University of Bristol conducted a meta-analysis of 148 clinical studies involving over 4.3 million patients in North America and the UK who were treated with opioids for chronic non-cancer pain. The 148 studies were all that was left from nearly 5,300 that were initially screened and rejected for various reasons — which should tell you a lot about the quality of studies that are out there.

“Clinicians and policy makers need a more accurate estimate of the prevalence of problematic opioid use in pain patients so that they can gauge the true extent of the problem, change prescribing guidance if necessary, and develop and implement effective interventions to manage the problem.  Knowing the size of the problem is a necessary step to managing it,” said lead author Kyla Thomas, PhD, Professor of Public Health Medicine at the University of Bristol.

Thomas and her colleagues included studies in their review that reported any sign of POU, such as abuse, tolerance, addiction, dependence, misuse, substance use disorder or “aberrant behavior.” The latter includes seemingly benign behavior like a patient being poorly dressed or unkempt in appearance, canceling or missing an appointment, asking for a specific drug, or even just complaining about their pain.

In some studies, “misuse” was defined so broadly that it included patients who stopped using opioids because their pain went away or they took a pill less often than recommended. A patient like that might be suspected of hoarding or even selling their unused medication.     

In other words, the researchers cast a pretty wide net on what constitutes OUD. And they hauled in a lot of fish.

Their findings, recently published in the journal Addiction, estimate that nearly one in ten pain patients (9.3%) are dependent on opioids and have OUD.

Nearly a third (29.6%) have “signs and symptoms” of dependence and OUD, and over one in five (22%) displayed aberrant behavior.

“Prescription painkiller misuse and addiction are widespread in chronic pain patients” is how the University of Bristol trumpeted the results in a press release, with the lone caveat that “these findings should be interpreted with caution.”

‘OUD Is Everywhere’

Critics of the study were quick to point out that equating dependence with opioid use disorder is misleading at best – the equivalent of a diabetic dependent on insulin being labeled with “insulin use disorder.”

“This is just one more paper, one of zillions, that seizes upon some outcome measures that have poor or no basis in science and that are not in any way indicative of addiction,” says Stephen Nadeau, MD, Professor of Neurology at the University of Florida College of Medicine. “As is so common, it favors the ridiculous notion that OUD is everywhere.”

Nadeau says any patient on daily opioids will experience symptoms of dependence or withdrawal if their medication is suddenly stopped. Neither is a clear sign of addiction or substance use problem, just as a patient asking for a higher dose is not necessarily a symptom of OUD.

“There is never any recognition of the ubiquitous phenomenon of pseudo-addiction: a patient in desperate pain asks for an increase in dosage. Instead of the request being interpreted at face value, the patient is branded with the diagnosis of OUD and booted from the clinic,” Nadeau told PNN.

Being “branded” or stigmatized is something that chronic pain patients like Brett Bradford are all too familiar with. He thinks the new addiction study will only result in more patients being taken off opioids.

“All physicians coming out of med school are being taught these hyper anti-opioid policies. This is only going to fuel things to get worse,” said Bradford. “This madness will not stop until opiates are totally off the market and nobody will be able to get any pain meds for any reason, short of being on their death bed. Maybe. If they are lucky.”

An Insider’s Perspective on CDC’s ‘Disastrous War on Opioids’

By Pat Anson

Dr. Charles LeBaron is a medical epidemiologist who worked for 28 years at the Centers for Disease Control and Prevention. LeBaron was not directly involved in developing the CDC’s 2016 opioid guideline, but knew colleagues who did and largely supported their efforts to rein in opioid prescribing.

Then LeBaron developed crippling pain from a meningitis infection and learned firsthand how the CDC guideline was harming patients. While hospitalized, he screamed into his pillow at night because a nurse -- following the CDC’s recommendations -- gave him inadequate doses of oxycodone. The pain relief only lasted a couple of hours, and then he had to wait in misery for the next dose.

“I hadn't experienced the pain that so many patients feel, so I hadn't had the level of sensitivity to the issue that would have benefited me. It took full personal experience to straighten me out,” said LeBaron. “You'd rather be dead than in pain. In that bubble of pain, it really is life changing.

“Once you experience that, you tend to view things very differently through a very different lens. At least that was my experience. There was nothing like being in acute pain.”

LeBaron eventually recovered from the infection and no longer needed oxycodone. He also didn’t become addicted. That lived experience made him wonder if the CDC -- his longtime employer – made mistakes in developing the guideline. He came to recognize that the CDC’s push to limit opioid doses was based on weak evidence and the false presumption that many patients quickly become addicted.

Most of all, he was shocked at how quickly the CDC guideline was adopted throughout the healthcare system. He’d never seen anything like it, in all his years at the agency.

“Most of the recommendations we come out with, that people should eat right, exercise or whatever, no one ever bothers doing. We have a tough time getting people to do things. This recommendation? They just had remarkably fast implementation,” LeBaron told PNN.

“I've never seen a recommendation that got implemented that fast and that hard by so many actors. Normally, it’s like herding cats in public health, trying to get everybody involved. And for prescription medications, there are a million cats. There are pharmacies, benefit managers, physicians, insurance and so forth. This thing just took off.”

Now retired, LeBaron decided to write a book about his personal experience with pain, along with a critique of the CDC guideline. “Greed to Do Good: The Untold Story of CDC’s Disastrous War on Opioids” gives a rare insider’s look into how the agency works and thinks.

The word “greed” may suggest there were financial motives behind the CDC guideline, but LeBaron says it’s more a matter of pride and hubris that borders on institutionalized arrogance.

The agency was so caught up in its reputation as the “world’s premier public health agency” -- one that defeated polio, smallpox, HIV and other infectious disease outbreaks -- that it developed an outsized belief that it could do no wrong.

According to LeBaron, that was the mindset that Dr. Tom Frieden had when he was named CDC Director during the Obama administration. While serving as New York City’s health commissioner, Frieden led ambitious campaigns to stamp out tuberculosis, ban smoking in public places, and limit unhealthy trans fats served in the city’s restaurants.  

At CDC, LeBaron says Frieden became “the driving force” behind a campaign to limit opioid prescriptions as a way to reduce rising rates of opioid overdoses.

“I would not attribute vicious and evil impulses to the people who were involved,” says LeBaron. “I think they were gravely mistaken, but not driven by the desire to harm. They conceived of themselves as wanting to do good in a very emphatic fashion.

“The problem here was not the motivation, the notion that if you can kind of reduce prescription opioids, maybe you'll reduce subsequent addiction. The problem was not looking at the thing sufficiently quantitatively and then not checking the consequences, or at least responding to the consequences when they're brought to your attention.”

People working in public health are normally careful about tracking the outcomes of their policies. But before and after the CDC guideline, the agency turned a deaf ear to a chorus of complaints that it was forcing millions of patients on long-term opioids into rapid tapers that resulted in uncontrolled pain, withdrawal and even suicide.    

Worst of all, the number of fatal opioid overdoses doubled to over 80,000 annually after the guideline’s release, an outcome that demonstrated CDC had gone after the wrong target at the wrong time and with the wrong solution.

“The typical person who's having an overdose is a 30-year-old male taking illicit medication. The most typical person who's getting chronic opioids for pain would be a 60-year-old woman with a variety of rheumatological conditions. So you're aiming at a completely off-center target,” LeBaron explained.

“Then subsequently the data started coming in that, in effect, you are worsening the situation. If you take people who really need pain control off their meds, in a sense, it normalizes illegal acquisition.

“If somebody is really in terrible pain, needs opioid medication and can't get it through the legal system, pain is a remarkable motivator. Very few motivators are as strong as pain. And ultimately, somebody will come up to you and say, ‘I know a guy.’ And sure enough, then you end up with completely uncontrolled, unregulated stuff.”

Not until 2022 did the CDC revise its original guideline and give doctors more flexibility in prescribing opioids. By then, its 2016 recommendations were so ingrained in the U.S. healthcare system that the revisions had little, if any, impact.

Frieden left the CDC in 2017. LeBaron says Frieden’s two immediate successors did little to address the overdose crisis and the harms created by the guideline. But he does have hope for the agency’s current director, Dr. Mandy Cohen, because she has experience in public health and a better understanding of the primary role played by illicit fentanyl and other street drugs in the overdose crisis.

Asked if the CDC guideline should be scrapped or withdrawn completely, LeBaron is circumspect. He thinks a review of the guideline is in order, as well as a return to public health policies that are checked and double-checked to make sure they have outcomes that actually work.

“The difficulty here, in my opinion, is many of the same problems continue to exist, even though the personalities are completely different, and there are still significant restrictions on people in chronic pain for no apparent benefit. There continues to be very high rate of overdoses,” LeBaron said.

“I'm kind of a diehard public health guy. I want to see whether anything good happens. Nothing good happened. Time to reconsider.”

Research Confirms What Women Already Know About Sex Bias in Pain Care

By Crystal Lindell

There’s a new study showing that doctors take pain reported by male patients more seriously than female patients. And I have to say – why are we still doing studies on this? 

Anybody who’s been paying attention already knows this is the case. We have known it’s been true for decades. What we actually need are studies on what can be done to effectively fix this sex bias. 

For the sake of relaying this important information one more time though, let’s look at the study, which was published in the journal PNAS. The researchers did an analysis of emergency room patient data in the U.S. and Israel, which showed that there is medical bias against female patients in pain management decisions.

They analyzed more than 21,000 patient records and found that female ER patients across every age group were consistently less likely to receive pain medication compared to male patients with similar complaints. 

Depressingly, this bias persists across different ages, pain levels, and even physician gender. Which means female doctors are just as guilty as male doctors.

"This under-treatment of female patients' pain could have serious implications for women's health outcomes, potentially leading to longer recovery times, complications, or chronic pain conditions,” says Shoham Choshen-Hillel, PhD, Associate Professor at The Hebrew University of Jerusalem.

Yeah – and pardon my French here, but – no shit. Like I said, anyone who’s been paying attention has known this for a long time. Many of us have already been living with the so-called “serious implications.” 

Way back in 2014 – a full decade ago – I wrote about my experiences as a woman in pain. At the time, I wrote: 

“Being in pain every day, all day, is hard. But when you’re a woman, there’s a whole extra layer to the situation that makes everything that much harder… 

Like did that male doctor just give me Aleve for my level-10 pain because he really thinks that’s going to help? Or did he just think that, as a woman, I was probably exaggerating?”

Now that I’m 10 years older, and 10 years more experienced as a patient with chronic illness, I can answer my own question: Yes. He definitely thought I was exaggerating. 

But I’m not the only one who’s been talking about sex bias in pain care for a long time. 

The advocacy organization for women in pain, “For Grace” was founded in 2002 – more than 2 decades ago! Their mission is “to increase awareness and promote education of the gender disparity women experience in the assessment and treatment of their pain.” 

A 2001 study of gender bias in the Journal of Law, Medicine & Ethics was given the headline "The Girl Who Cried Pain: A Bias against Women in the Treatment of Pain." 

And here's another one from the last century (1996) in The Journal of the International Association for the Study of Pain titled, "Gender variations in clinical pain experience"

The fact that female pain isn’t taken as seriously as male pain is not new! 

Solutions Needed

Researchers behind the latest study do call for solutions, asking for “urgent policy interventions to address this bias and ensure equal pain treatment regardless of sex.” 

Specifically, they recommend training programs for healthcare professionals to recognize and counteract sex bias, and say pain management protocols should be revisited to ensure fair and adequate treatment for all patients.

All great ideas. But not really new ones. 

Now we need new training programs to undo the ingrained patriarchal bias among doctors. Because whatever they’ve been trying clearly isn’t working. 

Continuing to do more and more research showing that what women have been complaining about for decades is true doesn’t help anyone. We need solutions. 

This is where I’m going to get a little bit radical. Because personally, when it comes to pain treatment, I already have a very good solution: A lot more pain medication needs to be sold the same way alcohol is – over the counter. We cannot trust doctors – even female doctors – to give it to women when we need it.

This would not solve the problem of female pain being ignored, but it would at least provide some immediate relief for women, as well as others, who often have their pain ignored because of sexism, cultural bias, racism and classism. 

This is also a large part of why I believe pain control and access to pain medication is a “my body, my choice” issue. Until we have medical training that can actually undo thousands of years of sexism, we should all have the legal right to treat our own pain when doctors refuse to take it seriously.  

In the meantime, we don’t really need more studies showing that there’s a sex bias in pain treatment. They’re essentially a waste of time at this point. What we need are solutions to a problem that millions of people have been aware of for a very long time.

Telehealth Offers More Convenience and Options to Rural Patients

By Crystal Lindell

I live in rural northern Illinois, near the Wisconsin border, which means like a lot of people in my area, I cross the state line to get most of my medical care. 

My location also meant that when telehealth appointments became more common post-2020, I wasn’t allowed to do the call from my house. Hospital administrators told me that I had to be within the state of Wisconsin to see my doctor. 

Thus, anytime I had a telehealth video call, I got in my car and drove about 45 minutes north across the Wisconsin border – all so I could park my car at a truck stop and call the doctor. 

My doctor’s actual office is another 45 minutes away, so this method was still preferable to driving 90 minutes each way to see him in person. But it wasn’t ideal, especially in the winter. I remember being completely bundled up with a hat and a hood covering my head, trying to tell my doctor about my current health status as horns from semi trucks blared in the background. 

Yes, I probably could have just lied and taken the telehealth call closer to my house, but aside from the fact that I don’t like lying, I also didn’t know if the hospital’s telehealth software had GPS that could locate where I was. I didn’t want to risk it. As a patient who takes a controlled substance medication, I don’t have the luxury of bending rules, lest I get in trouble and potentially even risk my prescription.  

Thankfully, after doing this driving slog for a few telehealth appointments, something was worked out between Wisconsin and Illinois to where I am now able to do telehealth appointments from my home. And because a lot of doctor appointments for my chronic health condition are just check-ins, I have to tell you – telehealth is amazing. 

I truly love that it not only saves me from a long drive for appointments, it also means I don’t have to be exposed to whatever germs may be circulating at my doctor’s office. If there was any good to come from COVID, it’s that it finally pushed telehealth into the mainstream. 

Of course, with each advancement comes consequences. A recently updated study published in the Review of Financial Studies found some potentially bad news about telehealth: It hurts rural hospitals and medical providers, many of whom are already struggling.  

The researchers found that as rural patients opt for telehealth appointments with urban healthcare providers, rural healthcare systems lose patients. Then things start to spiral downward, as the loss of patients means they have less money to invest in both capital and staffing, which means they offer even fewer services. Then they lose even more patients to urban telehealth providers. 

“Rural hospitals are losing, on average, a lot of money,” says co-author Zihan Ye, assistant professor of finance at the University of Tennessee at Knoxville.

Ye says patients who choose remote healthcare primarily because of convenience should consider the long-term financial ramifications, as should policymakers who have the power to influence which providers can afford to offer telemedicine at all.

However, I have to point out, that’s a big ask for sick people. It should not be the job of patients to consider the “long-term financial ramifications” of providers. 

I would love to have a healthy, functional rural healthcare provider closer to me, but I also would counter that rural healthcare abandoned us long before we resorted to telehealth. 

I don’t drive 90 minutes each way to see my doctors because I enjoy road trips. I have been doing it since 2013 – long before telehealth appointments were a feasible option. 

And I do it because I tried and failed to find a doctor closer to me, who could handle the complex medical needs that come with having a chronic illness. Even if I could have found a primary care doctor near me, there aren’t many specialists in my area and there haven’t been for a long time.  

Ideally, governments and hospital systems will work to expand rural healthcare networks over the coming years. But patients, unfortunately, can’t count on that happening. Until we see real progress, the answer seems pretty straightforward: Using the tools we have right now to solve the problems we face today. 

For many rural patients, that means using telehealth appointments to their full potential. Even if it means sometimes attending them in a truck stop parking lot. 

'Screaming Woman' May Have Died in Agony 3,000 Years Ago

By Pat Anson

The ancient Egyptians were well practiced in using natural substances as medicine. Opium was used as an analgesic and to help people sleep. Willow tree bark (later used to develop aspirin) was used as an anti-inflammatory and pain reliever. Extracts from carob trees were used as antidepressants. And they rubbed moldy bread on infected wounds centuries before penicillin was discovered.

“The range of conditions treated and the various conservative and surgical treatments used are astounding,” a German oncologist wrote after spending a year studying the history of Egyptian medicine.

But those ancient remedies failed when it came to treating a middle-aged Egyptian woman who apparently died in agony 3,000 years ago. Her mummy was discovered in 1935 and soon became known as the “Screaming Woman” because her mouth was wide open, as if locked in a permanent scream.

Only recently have researchers used CT scans and other advanced imaging techniques to “virtually dissect” her body and learn more about her life and death. Their findings were recently published in Frontiers in Medicine.

“The Screaming Woman is a true ‘time capsule’ of the way that she died and was mummified,” said lead author Sahar Saleem, MD, a professor of radiology at Kasr Al Ainy Hospital of Cairo University.

Saleem and her colleagues estimate the woman was about 48 years old at the time of her death and suffered from mild arthritis of the spine.

Her body was unwrapped and in good condition – for a mummy – laying on her back, with her legs extended and her hands folded over her groin, with no obvious sign of injury or trauma.

Unlike other mummies, the woman still had all of her internal organs, including the brain, heart, lungs and kidneys, which are normally removed during the embalming process. She was missing several teeth, which were apparently removed before her death because her mouth had time to heal.

“Teeth lost during life may have been extracted. Dentistry had originated in ancient Egypt, with Hesy Re the first recorded physician and dentist in the world,” said Saleem.

Access to a dentist and the fact that the woman was embalmed in juniper and frankincense -- costly materials that were imported -- suggest she came from a wealthy family. She was wearing two gold and silver rings when her coffin was found and had a lengthy wig made from palm fibers. 

Researchers were unable to determine a cause of death, but speculate that she died during extreme physical or emotional pain that made her scream. Rigor mortis may have quickly set in after her death, locking her facial muscles and ligaments in place.

“The mummy's screaming facial expression in this study could be read as a cadaveric spasm, implying that the woman died screaming from agony or pain,” said Saleem.

Cadaveric spasm is a rare form of muscular stiffening, typically associated with violent deaths under extreme physical conditions and intense emotion. Other academics might dispute that interpretation, because decomposition or embalming could also alter a body’s facial expression.

“The true history or circumstances of the death of the woman… are unknown; hence, the cause of her screaming facial appearance cannot be established with certainty,” researcher concluded.

FDA Warning About Kratom Death Challenged by Critics

By Pat Anson

The FDA is warning consumers not to ingest a liquid kratom extract after the death of one person and “many reports” by users of other serious adverse events, including withdrawal, addiction, anxiety and aggressive behavior.

The FDA’s July 26th alert about Black Liquid Kratom, which is made by Optimized Plant Mediated Solutions (OPMS), contained no details about the death or any of the adverse events. It was soon challenged by the American Kratom Association (AKA), which said the “mistaken and misguided safety alert” should be withdrawn until the FDA independently verified claims about the death.   

In recent years, kratom has become a popular supplement in the United States, where it is used by millions of people to self-treat their pain, anxiety, depression and substance use problems. Although legal in most states, kratom has never been approved for medical use by the FDA.

“Products containing kratom have been marketed as foods, including dietary supplements, or drugs with claims of therapeutic benefits. However, the FDA has not approved any prescription or over-the-counter drug products containing kratom or associated compounds, mitragynine and the more potent metabolite, 7-OH mitragynine,” the alert warned.

“The FDA recently received an adverse event report of a person who died after using OPMS Black Liquid Kratom. This is one of many reports of serious adverse events individuals have reported experiencing after consuming OPMS Black Liquid Kratom.”

The agency released no other information about where or when the death occurred. Only one death involving 7-OH mitragynine is recorded on the FDA’s Adverse Events Reporting System. That case was reported in 2023, but the death may have occurred earlier.

In 2021, a Georgia man died after consuming Black Liquid Kratom. An autopsy concluded that 23-year old Ethan Pope died from cardiac arrest due to mitragynine intoxication. Pope’s family has filed a wrongful death lawsuit against OPMS, the AKA and other kratom vendors.

Kratom is normally sold as a dry unadulterated powder, but Black Liquid Kratom is a highly concentrated 50:1 extract containing up to 375mg of mitragynine — an alkaloid that acts on the same receptors in the brain as opioids.

A kratom vendor that sells Black Liquid Kratom warns the extract is “too strong for use on a daily basis.”

If the 2021 Georgia death is the one FDA is referring to in its safety alert, it raises questions about why the agency waited so long to warn consumers about the extract or why it was never recalled. Black Liquid Kratom can still be purchased from a number of kratom vendors.

"The consistently unreliable and often false statements about kratom issued by the FDA over the past decade, which is a part of its relentless and misguided pursuit of banning kratom products that is not supported by reliable science, are wrong and Commissioner Califf should hold his agency fully accountable," Mac Haddow, Senior Fellow on Public Policy at the AKA, said in a statement.

"The various autopsy reports that have claimed that kratom is the sole cause of deaths have been thoroughly refuted as incomplete, poorly documented, hastily concluded, or demonstrably incorrect."

Alert ‘Coordinated’ by Trial Attorneys

In 2016, the FDA and DEA tried unsuccessfully to ban kratom products nationwide by listing it as a Schedule I controlled substance. An Assistant Secretary for Health in the Trump administration withdrew the FDA’s scheduling request in 2018, saying it was based on “embarrassingly poor evidence & data.”

The AKA characterized the FDA’s alert as another effort to demonize kratom that was being “coordinated” by trial attorneys seeking to cash-in on product liability lawsuits. A New York law firm even cites the alert on its website, telling kratom users that it was “ready to represent you in your injury case.”

“Plaintiff’s trial attorneys have been openly encouraging clients and other anti-kratom advocates to submit complaints to the FDA on alleged deaths over the past few months and have taken to social media platforms to solicit others to do so. The FDA ‘safety alert on kratom’ appears to be the result of a coordinated effort by those trial attorneys who have a financial interest in litigation against the very company the FDA’s safety alert identifies,” the AKA said.

A 2020 study funded by the National Institute on Drug Abuse concluded that kratom is an effective treatment for pain, helps reduce the use of opioids, and has a low risk of adverse effects. Hundreds of deaths have been linked to kratom use, but in the vast majority of cases other drugs and illicit substances were involved.  

A toxicology test on Ethan Pope found antihistamines and antidepressants in his system, but no illegal drugs or alcohol. The Georgia Bureau of Investigation classified his death as an accident.

The Link Between Collagen Deficiency and Arachnoiditis

By Dr. Forest Tennant

A major finding in our studies of adhesive arachnoiditis (AA) is that most AA patients also have hypermobile Ehlers-Danlos syndrome (hEDS) or a related disorder now called hypermobile spectrum disorder (HSD).

AA is a chronic inflammatory condition that causes nerves in the spinal canal to form adhesions that “glue” them together, while hEDS and HSD cause deficiencies in collagen and the immune system.

How are these conditions connected?

Normal collagen is in thick strands that hold connective tissues together and helps resist infections, tearing, and autoimmune degeneration. When collagen is deficient, the strands may be thin, broken, shortened or non-existent. This allows viruses and bacteria to invade, infiltrating tissues and causing more infections than in individuals with healthy immune systems.

Spinal tissue normally contains considerable amounts of collagen, but in patients with hEDS or HSD they are weak and susceptible to deterioration, inflammation, adhesions and scarring. These spinal tissues include intervertebral discs, vertebrae, spinal canal cover (dura and arachnoid layers), ligaments, and cauda equina nerves.

Weaknesses in spinal tissue make persons with hEDS and HSD more susceptible to AA. It’s also not uncommon for them to develop one or more of these conditions before AA:   

• Tavlov cyst

• Spinal fluid leaks

• Chiari

• Tethered spinal cord

• Herniated disc

• Back pain

• Neck pain

• Spinal arthritis

We have found that persons with hEDS and HSD are also susceptible to Lyme disease, cytomegalovirus, herpes 6 virus, and especially the Epstein-Barr virus (EBV). Almost everyone has EBV, which is typically dormant, but the virus may reactivate from its parasitic life in throat membranes or lymphocytes to infiltrate the brain and spinal tissues.

Persons with hEDS or HSD who have back or neck pain for over 90 days should be screened with the new EBV 4 panel test and take measures to hopefully prevent AA. We highly recommended that they take collagen supplements.

In our studies of patients with MRI-documented AA, essentially 100% have EBV autoimmunity and about 70% show EBV reactivation. About half of those that we review do not know they have hEDS or HSD.

For more details on the link between AA, hEDS and HSD, our new book "The Ehlers-Danlos / Arachnoiditis Connection" is recommended.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis.

Readers interested in learning more about this research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can also subscribe to its bulletins here.  

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

AI in Healthcare: Designed for Progress or Profit?

By Crystal Lindell

As a pain patient, I take a controlled substance medication, which means every single time I need a refill I have to contact my doctor. 

It doesn’t matter that this refill comes every 28 days and that I have been getting it refilled every 28 days for years. It doesn’t matter that my condition has no cure, and that I will most likely need this medication refilled every 28 days for the foreseeable future.

No. I have to make sure to contact my doctor and specifically ask for it, every single time.  

There are ways to automate this process. They could give me a set number of automatic refills and have them sent to the pharmacy every 28 days. If we were even more practical, they could just give me 60 to 90 days worth of pills at a time, and save me from multiple trips to the pharmacy. 

But because of insurance rules, hospital policies and opioid-phobia legislation, all of those options are impossible. In fact, they actively work to make a process that could be automated into something that has to be done manually. 

Which is why I’m so skeptical of Artificial Intelligence (AI) in healthcare. 

The promise of AI is that it can automate away the mundane tasks so many of us hate doing. Many health related tasks could easily be automated. They just purposefully are not. 

The hospital I go to for my medical care, University of Wisconsin-Madison, recently released a report filled with recommendations for how AI should be integrated into healthcare. It was based on a recent roundtable discussion that included healthcare professionals from across the country. 

But while the participant list included doctors, IT staff, policy experts, and academics, there was one very glaring absence – the list of participants included exactly zero patients. 

UW Health was one of the organizers for the panel, along with Epic, a healthcare software developer. Their report includes some seemingly good recommendations. 

They ask that AI be used to supplement the work that doctors, nurses and other healthcare staff perform, as opposed to replacing the staff altogether. They say AI could be a great tool to help reduce staff burnout. 

They also recommend that the technology be set up in such a way that it also helps those living in rural areas, in addition to those in more metropolitan ones. The report also emphasizes that healthcare systems should prioritize “weaving the technology into existing systems rather than using it as a standalone tool.”

Additionally, the report stressed the need for federal regulations to “balance space for innovation with safeguarding patient data and ensuring robust cybersecurity measures.”

I don’t disagree with any of that. But it’s a little frustrating to see those recommendations, when some of those problems could already be solved if we wanted them to be. 

And while the panel’s report is new, UW Health’s use of AI is not. 

In April, UW Health announced that they were participating in a new partnership program with Microsoft and Epic to develop and integrate AI into healthcare. 

At the time they said the innovation would be focused on “delivering a comprehensive array of generative AI- powered solutions… to increase productivity, enhance patient care and improve financial integrity of health systems globally.”

That’s the real motivation to bring AI into healthcare: make more money by improving “financial integrity.” Something tells me that AI won’t be used to lower patient’s bills though. 

UW Health also recently shared that its nurses were using AI to generate responses to patients. Over 75 nurses were using generative AI, which assisted them in creating more than 3,000 messages across more than 30 departments.

“This has been a fascinating process, and one I’ve been glad to be part of,” said Amanda Weber, registered nurse clinic supervisor, UW Health. “I have found having a draft to start from helpful, and I’m glad I could provide feedback on improvements and features to ensure this can be a good tool for nurses and have a positive impact on our patients.”

Before I even knew about this program, I had a feeling that AI was involved. 

Recently, when I messaged my doctor about my upcoming refill, I received an overly-formal, odd response that felt very much like generative AI writing to me. Which is fine. I honestly don’t mind if my doctor saves time by using AI to respond to patient emails. Heck, I myself have used AI to write first drafts of some emails. 

But my doctor and his staff wouldn’t even need to reply to my emails if he was allowed to set up automatic refills of my long-time medication instead. 

There are many ways to improve health care, and tools like generative AI are likely among them. But AI can’t solve problems that exist on purpose. 

Unless patients are at the forefront of the conversations about these tools, I fear they’ll only be used to solve the sole problem hospital administrators actually care about: how to make more money. 

What Doctors Really Mean When They Say It’s an ‘Easy Surgery’

By Crystal Lindell

Back in 2009, I had an “easy surgery” to get my gallbladder removed after multiple excruciating gallbladder attacks. Before the operation, my surgeon went on and on about how easy the surgery would be. He emphasized multiple times how simple it was.

I went into that operating room completely underestimating what I would experience when I came out of the anesthesia. 

I woke up from that surgery vomiting so much that the single hour I was scheduled to spend in post-op recovery turned into eight hours. And instead of the three days I was told that I’d need for recovery at home, I spent seven days in excruciating pain, unable to get off the couch without wanting to scream. 

That’s when I realized that a “simple” surgery just means simple for the doctor to perform. It’s also when I started to realize that this logic applies to all the ways doctors explain health issues. 

In fact, when doctors describe any health issues, they aren’t talking about the patient’s experience at all – they are talking about how they themselves experience it. They love to use terms like mild, simple, and easy. But patients should understand that they are not describing the patient experience when they say these things. 

Mild case of the flu? That just means they don’t have to see you in person to treat you. But it could still mean you’re unable to get out of bed for a month. 

Easy surgery? That means it’s easy for them to perform. It has no relation to how difficult recovery will be for you. 

Post-op discomfort? Yeah, it’s super uncomfortable for the doctor to have to see you in so much excruciating pain before they send you home in agony. 

This even applies to the ways doctors often describe medications. They’ll often say a prescription is “a very strong drug” – but only because it’s difficult for them to prescribe because of things like health insurance denials and DEA paperwork. Meanwhile, the side effects from what they call a “common” generic medication could ruin your body and your life. 

This is a lesson that patients often have to learn the hard way. I have. But now, as someone with a chronic illness, I understand. 

While I have only been hospitalized overnight one time since I first got really sick in 2013, doctors would tell you this means I have a “mild” case of intercostal neuralgia and that my Ehlers-Danlos Syndrome is “mild.”

Yet chronic pain and EDS have impacted every single aspect of my life. From my career, to my love life, to how often I’m able to shower. It’s impacted what clothes I can wear because tight shirts are so painful that I can’t leave the house if I try to wear them. I’ve had to quit jobs because I couldn’t work through the pain. And the guy I was dating when I first got sick eventually broke up with me because my health issues were too much for him to handle.

Hearing doctors describe my health issues as “mild” feels both insulting and disorientating. But worse than that, it can also impact how willing doctors are to investigate and treat my health problems. It’s likely why, despite how urgent chronic pain has been for me from the start, it still took doctors five full years to even diagnose me with Ehlers-Danlos Syndrome. As long as I didn’t need emergency medical care, there was no rush on their end. 

I’m not sure it’s worth it for patients to push back on these types of health descriptors. In my experience, it doesn’t usually change how doctors are responding to you. But understanding it yourself – knowing that how a doctor describes your health problem isn’t necessarily indicative of how severe it is to experience it as the patient – can itself be freeing. 

And sometimes, you may even run into a good doctor, who makes this type of thing clear to you as a patient. They are rare, but they do exist. 

You can also take comfort in the fact that if the doctors who don’t make it clear to the patient ever have to endure what you’ve been through, they will come to understand how inaccurate and insulting their descriptors were. Afterall, nothing about something like surgery is ever easy for the patient.

New Non-Opioid Analgesic Gets Priority Review from FDA

By Pat Anson

The Food and Drug Administration could approve an experimental non-opioid analgesic early next year, potentially making it the first new medication for acute pain in over two decades.

Vertex Pharmaceuticals says the FDA has accepted its New Drug Application for suzetrigine, giving the drug a priority review with a target action date of January 30, 2025. Suzetrigine has previously been granted FDA Fast Track and Breakthrough Therapy designations for the treatment of moderate-to-severe acute pain.

“Today’s FDA filing acceptance for suzetrigine marks a critical milestone toward bringing this new, transformative non-opioid analgesic to the millions of patients,” Nia Tatsis, PhD, an Executive Vice President and Chief Regulatory and Quality Officer for Vertex, said in a statement.

“The FDA’s granting of a priority review further reinforces the high unmet need in treating acute pain, and the filing brings us one step closer to our objective of filling the gap between medicines with good tolerability but limited efficacy and opioid medicines with therapeutic efficacy but known risks, including addictive potential.”

Suzetrigine is designed to block pain in the peripheral nervous system, rather than the brain. That means it won’t have the “liking” effects of opioids or be as addictive.  

In Phase 3 clinical studies, suzetrigine was more effective in reducing post-operative pain than a placebo after minimally invasive surgeries.  Over 80% of patients rated suzetrigine as good or excellent in treating acute pain, but it was not more effective than a combination of the opioid hydrocodone and acetaminophen, more commonly known as Vicodin.

Vertex hopes suzetrigine will eventually be approved for a variety of pain conditions, not just post-operative pain.  The company has been studying the drug as a treatment for pain caused by diabetic peripheral neuropathy.

“In my 24 years practicing medicine, I have seen firsthand the desperate need for new non-opioid therapies for treating pain. Too many people today are either undertreated, dealing with negative side effects of currently available therapies or foregoing pain medications altogether for fear of becoming dependent on opioids,” said Scott Weiner, MD, a Vertex consultant and Associate Professor of Emergency Medicine at Harvard Medical School.

The Biden Administration has been under pressure from lobbyists, politicians and anti-opioid activists to have the FDA approve more non-opioid medications like suzetrigine. The new analgesics are expected to be far more expensive than opioids and other older pain relievers.

If the FDA approves suzetrigine in January, it will coincide with implementation of the NOPAIN Act, which will expand access to non-opioid analgesics in outpatient surgical settings by making them eligible for higher Medicare reimbursement rates.

Mental Health Needs of Chronic Pain Patients Often Go Untreated

By Pat Anson

People who live with chronic pain often experience anxiety and depression, but they are far less likely to have access to mental healthcare in the U.S. than those who do not have persistent pain, according to a new study.

Nearly 52 million American adults have chronic pain – about one in every five. Over 43% of them have a need for mental health treatment, compared to just 17.4% of adults who do not have chronic pain.

“People living with chronic pain may form a distinct population with special mental health care needs,” said lead author Jennifer De La Rosa, PhD, strategy director for the University of Arizona Health Sciences Comprehensive Center for Pain & Addiction. “Improving health care for people with chronic pain includes not only connecting people to care, but also addressing a disproportionate failure to achieve relief.”

De La Rosa and her colleagues reviewed findings from the 2019 National Health Interview Survey, which collected health information from a representative sample of nearly 32,000 U.S. adults. Their findings, recently published in the journal PAIN, show that just 44.4% of those with chronic pain, anxiety and depression had their mental health issues adequately treated, compared to 71.5% of those without pain.

“There are many possible reasons an individual with chronic pain might have suboptimal mental health experiences, including the accessibility of care and the feasibility of attending appointments,” De La Rosa said in a statement. “Additionally, few mental health providers are trained in chronic pain, so only a small percentage of people living with chronic pain are likely receiving mental health treatment that is designed to address their needs.”

It is not specifically addressed in the U of A study, but many patients on opioid pain medication no longer have access to benzodiazepines – a class of anti-anxiety medication that includes Xanax and Valium. Once commonly prescribed together, insurance companies and medical guidelines now strongly discourage that practice, due to fears that the two drugs raise the risk of an overdose.

In 2016, the CDC warned doctors to avoid co-prescribing opioids and benzodiazepines “whenever possible.” That same year, the FDA updated its warning labels to state that taking the drugs concurrently could result in “profound sedation, respiratory depression, coma and death.”

Even when mental health medications or therapy are offered, pain patients may be reluctant to accept them.

“Some patients may interpret mental health screening as potentially discrediting perhaps reflecting provider's doubts as to the legitimacy of self-reported pain,” the U of A researchers said. “Patients may also fear that acknowledging mental health comorbidity will reduce the likelihood of being prescribed opioids. The heightened mental health treatment stigma experienced by patients with chronic pain may lead many patients to resist the conceptualization of their chronic pain as having any emotional or mental components.”

A recent study by the same research team estimated that 12 million U.S. adults with chronic pain have  anxiety or depression so severe that it limits their ability to work, socialize and complete daily tasks. To improve patient outcomes, researchers say the routine evaluation of pain patients for anxiety and depression should become “a cornerstone of mental health policy.”

AARP Should Stop Blaming Pain Patients for the Opioid Crisis

By Carol Levy

Toast and jam. Cake and coffee. Peanut butter and jelly. Pain patients and the opioid crisis.

One of these things is not like the others. But to most people, they all go together. Even when research shows little correlation between opioid prescriptions and overdose deaths.

We’ve been hearing that same old tired narrative for years, often from “experts” who speak with absolute certainty.

“Two major facts can no longer be questioned. First, opioid analgesics are widely diverted and improperly used, and the widespread use of the drugs has resulted in a national epidemic of opioid overdose deaths and addictions,” Nora Volkow, MD, Director of the National Institute on Drug Abuse, and Thomas McLellan, PhD, founder of the Treatment Research Institute and a scientific advisor to Shatterproof, wrote in a joint op/ed in The New England Journal of Medicine in 2016.

“Second, the major source of diverted opioids is physician prescriptions. For these reasons, physicians and medical associations have begun questioning prescribing practices for opioids, particularly as they relate to the management of chronic pain.”

We now know that prescription opioids play a minor role in the overdose crisis and that only about three-tenths of 1% are actually diverted. Illicit fentanyl and other street drugs are responsible for the vast majority of overdose deaths, not pain medication.

But the same tired and misinformed narrative continues, with patients who need opioids paying the price when their doses are reduced or taken away.

Recently, the American Association of Retired Persons released an AARP bulletin, with the main headline being “The War on Chronic Pain.” Wow!  I was excited. Maybe some new information that I can use?

My heart sank as I read the article and quickly came upon these words: “Our attempts to treat chronic pain with medication have led to an opioid abuse epidemic so severe that overdoses are now among the leading causes of death for adults ages 50 to 70. “

The stereotype wins again. Prescription opioids caused the crisis.

I was curious to see what else AARP had to say about pain management and found several articles over the years with a glaringly obvious bias against opioids.

“Americans over 50 are using narcotic pain pills in surprisingly high numbers, and many are becoming addicted,” a 2017 AARP article warned. “A well-meant treatment for knee surgery or chronic back troubles is often the path to a deadly outcome.”

The article went on to claim that older Americans had become “new opioid dealers” who fueled the opioid crisis by “selling their prescription painkillers to drug pushers.”

A 2019 AARP article took a more nuanced approach to pain, claiming that “science was homing in on better ways to treat it,” such as non-opioid drugs, exercise and cognitive therapy.

“If the opioid crisis has provided an excellent example of how not to treat chronic pain, advances in brain science are leading to a fuller understanding of how to more safely find solutions,” AARP said.

Five years later, science has brought us no real solutions. Opioids are still the most potent and reliable medications for pain. For patients in severe pain, they are often the only treatment that works.

The sad part is, if AARP had simply asked the American Medical Association, they would have found that prescription opioids are not the main cause of overdoses and deaths.

In 2021, the AMA reported that opioid prescriptions had fallen by over 44%, yet drug overdoses and deaths were still rising. “The nation’s drug overdose and death epidemic has never just been about prescription opioids,” said then-AMA President Gerald Harmon, MD.

In a 2023 report, the AMA warned again that “reductions in opioid prescribing have not led to reductions in drug-related mortality.”

Why is that not worth including in AARP’s latest sensational reporting on the opioid crisis?

I read this line the other day: “There is no word for infinite pain.” That rings very true for me, probably for many of us. Chronic pain often does not end. We may have a diagnosis, some condition or disorder that causes pain, but there is no good word for pain that is unending and unrelenting.

AARP’s continuing portrayal of many seniors as addicts or drug dealers pushing “narcotic pain pills” is not helpful. Repeatedly labeling us like that has had devastating consequences on pain patients around the country. 

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.