Americans Reporting More Chronic Pain

By Pat Anson, PNN Editor

A startling new study has concluded that the prevalence of chronic pain has grown substantially in the United States since 2002, affecting virtually every age group, sex, ethnicity and demographic. By 2018, over half of American adults (54%) reported having pain, with each birth group in greater pain than the one that came before it.

“You might think that with medical advances we’d be getting healthier and experiencing less pain, but the data strongly suggest the exact opposite,” said co-author Hanna Grol-Prokopczyk, PhD, an associate professor of sociology in the University at Buffalo College of Arts and Sciences.

“We looked at the data from every available perspective including age, gender, race, ethnicity, education, and income, but the results were always the same: There was an increase in pain no matter how we classified the population.”

Grol-Prokopczyk and her colleagues analyzed responses from over 441,000 people who participated in the National Health Interview Survey (NHIS) from 2002 to 2018. While research on pain trends usually focuses on people over age 50, they look at adults aged 25-84. The data was analyzed for reports of joint, low back, neck, face or jaw pain, along with headaches and migraines.

The research findings, published in the journal Demography, show that pain increased for each body site during the study period, especially for joint, low back and neck pain. Reports of pain in at least one site increased by 10%, representing an additional 10.5 million adults experiencing pain.

SOURCE: DEMOGRAPHY

SOURCE: DEMOGRAPHY

Not surprisingly, pain was most common in the oldest age group (65-84), with health problems such as high body mass index (BMI), hypertension, diabetes and kidney conditions correlating with increases in pain. Obesity was also associated with more pain in young and middle-aged adults, along with more stress and alcohol consumption.

“What we’re seeing in the younger age groups demonstrates how pain in some ways functions as much as a mental health problem as it does a physical health problem,” said Grol-Prokopczyk. “Pain can be exacerbated by stress, and stress can bring about alcohol use.”

Socioeconomic disparities are also involved. While pain increased for people in every income and education level, it rose faster for low-income Americans and those who never attended college.

“This study has documented steep, sustained, and pervasive increases in chronic pain among Americans across the adult life span. This is a concerning finding that should stimulate new research in demography and other social sciences. We found that key correlates of the rise in pain prevalence include not only specific diagnoses, such as arthritis, but also psychological distress, increased body weight, and heavier alcohol use -- factors that highlight the psychosocial roots of pain in populations,” researchers concluded.

Are Americans experiencing more pain or just reporting it more often? And what role, if any, did the opioid crisis play? The researchers found no definitive answers to either question, but they speculated that increased opioid use and awareness about pain may have led Americans to report pain more readily in the hope of getting it treated.

“Our findings in this study are not an argument for increased opioid use; in contrast, we posit that opioids may have contributed to the rise of pain prevalence in the United States,” they said.

That statement is puzzling, because opioid prescribing peaked in 2011 and has steadily declined ever since. The researchers apparently did not consider that more pain is being reported because it is often poorly treated or untreated.

A recent PNN survey of nearly 3,700 patients found that over 92% believe their pain levels and quality of life have grown worse. Over a third said they were unable to find a doctor to treat their pain and 58% said they were taken off opioids or tapered to a lower dose against their wishes.  

What HBO’s ‘Crime of the Century’ Doesn’t Tell You

By Dr. Lynn Webster, PNN Columnist

About 30 years ago, when I opened a pain clinic, I met a patient who made a lasting impression on me. She was a middle-aged woman who sat on my examining table with hunched shoulders and an unsmiling expression. Dejectedly, she began to tell me about her experiences: living with severe, chronic pain; being passed around by hard-hearted doctors; and being ignored or misunderstood by her family members and friends.

Her words, voice, demeanor saddened me. It wasn’t so much that her pain conditions were unforgiving – they were – but my realization that she was always alone with her pain. She didn’t expect me to believe her, she was just going through the obligatory motions of a life of being unseen and unheard.

I would go on to treat thousands more patients with chronic pain over the next decades, each with unique and complex conditions, but they showed up remarkably and tragically similar to that middle-aged woman. They were as invisible as their pain conditions.  

A Narrow Perspective of Opioids

I thought about this particular patient after seeing the HBO documentary “Crime of the Century” and its terribly incomplete perspective of opioids. It occurred to me that the visceral reaction of most viewers would be, "Why are opioids even being used?"

In part, I agreed to be interviewed by Alex Gibney, the director of the documentary, to educate why opioids are still prescribed, despite their risks. After months of exchanging emails and having conversations with a producer, I decided that speaking on the record would be a calculated risk. As a doctor who had prescribed opioids, and who had lost patients because of their pain, I had been confronted by tough interviewers in the past.

The interview reopened a painful episode when a patient under the care of my pain clinic died — despite the treatment we provided, not because of it. The interviewer asked me about my patient's death. I chose not to address it during the interview out of respect for those involved, and I will refrain from doing so in the future.

A claim that I must address, however, is speaking fees. The documentary says that I was paid hundreds of thousands of dollars in speaking fees which supposedly influenced my prescribing practices. The fact is that I was paid a nominal amount in speaking fees. The purpose of those speaking engagements was to educate clinicians about the safest ways to treat people in pain, not to encourage them to use opioids. At no time ever did I advocate for the use of any branded drug.

Gibney’s comment in an NPR interview that I was “trying to preach the gospel of the opioid” during my career is patently false. If critics can’t distinguish the difference between continuing medical education and being pro-patient (which I devoted my career to) and corporate shilling and being pro-opioid, then that’s their problem. They may want to rethink their profession of telling a story based in truth about a complicated topic.

Narrative over Nuance

Beyond the erroneous claims about me, my fundamental problem with the documentary is its totalizing depiction of an extremely complicated and often confounding societal predicament. According to the documentary, all nuance must comport with the narrative. Deaths due to opioid overdoses – all tragic – are placed under a spotlight, but deaths because of chronic pain, often complicated because of restricted access to opioids, are left alone in the dark.

This narrative could accelerate flawed policies already gaining traction. More policy decisions like the 2016 Centers for Disease Control (CDC) opioid prescribing guideline, could have a further chilling effect on opioid prescribing — despite the fact that lowering the number of opioid prescriptions does nothing to reduce the number of opioid-related overdose deaths.

The documentary appropriately highlights how opioids can, and do, lead to addiction and deaths. But the scientific fact is that not everyone who takes opioids gets addicted or dies; comparatively few do. The benefits of using some opioids outweigh the risks for many people with severe chronic pain. For a certain patient category, opioids can be the difference between life and death, and happiness and misery.

Having studied addiction for my entire career, I am deeply sensitive to the propensity of some people to be harmed by opioids. I also am deeply sensitive to intractable pain for which there are no treatment options today other than the use – as judiciously as possible – of opioids. My experience with patients confirms two things: opioids kill, but so does pain. We cannot continue to treat these outcomes as mutually exclusive.

We must resist the temptation to further restrict or ban opioids for people who desperately need them. Instead, physicians must be allowed to fulfill their professional responsibilities and uphold their oaths, evaluate patients with complicated needs, apply proper discernment, and treat their patients in accordance with the best available scientific evidence.

A CDC disease expert, DEA officer, member of Congress, activist, or documentarian should not ever attempt to practice medicine. 

People Suffer Needlessly

Today, one in five American adults suffers from chronic pain, or pain lasting longer than 12 weeks. Chronic pain is a full-blown crisis, not unlike the opioid crisis. Yet we hear precious little about the chronic pain crisis. Most people with pain silently, if unwillingly, endure their conditions. Few of us would listen to them, even if we had the opportunity.

Thirty years ago, I waited until my patient had finished telling me about her experiences. Then I simply said, “I believe you.” Hearing those three words, she burst into tears of relief. Few people had been willing to take her at her word when she told them her life had been derailed by unremitting pain. Hers was among the millions of voices that were, and remain, unheard.

The documentary’s central claim is that marketing opioids is a crime and was understood as such at the time when they began to be used to treat non-cancer pain. The use of opioids in appropriate circumstances for a certain kind of patient was not a crime then, nor is it today. As long as such narratives continue to take root, we shouldn’t be surprised if one “crime” produces another masquerading as a solution.

Lynn R. Webster, MD, consults with the pharmaceutical industry. He is author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. You can find Lynn on Twitter: @LynnRWebsterMD.

MindMed Investigating Use of Psychedelics to Treat Chronic Pain

By Pat Anson, PNN Editor

A startup pharmaceutical company has announced plans to investigate the use of LSD and other psychedelics to treat chronic pain.

New York-based Mind Medicine (MindMed) is exploring the use of psychedelics to treat two pain conditions, which it is calling “Project Angie.” The company is already investigating the use of psychedelics to treat addiction, anxiety and attention deficit hyperactivity disorder (ADHD).

"With the launch of Project Angie, we seek to align closely with MindMed's core mission to improve mental health and combat substance use for the many patients in need. If we can help to develop a new paradigm to treat pain, it may have the potential to greatly reduce the use of addictive medicines such as opioids currently ravaging society and its mental health," MindMed CEO & Co-Founder J.R. Rahn said in a statement.

MindMed did not disclose what pain conditions it was developing treatments for, but it is working with researchers in Switzerland who have a Phase 2 clinical trial underway on the use of LSD to treat cluster headache. The company said it is also evaluating a second indication for a “common, often debilitating, chronic pain syndrome.”

Interest in using psychedelics to treat medical conditions has been growing in recent years. Preliminary research suggests that microdoses of LSD, psilocybin (magic mushrooms) and other psychedelics may offer a new way to treat pain. The exact mechanism in which psychedelics have an analgesic effect is not fully understood, but early research indicates that LSD can modulate serotonin receptors that help regulate pain and inflammation.

"Evidence dating back to the 1950s suggests that LSD and other psychedelics may have analgesic effects, but this treatment area remains largely untapped by companies studying psychedelics, with the majority of research focusing solely on psychiatric indications," said Rob Barrow, MindMed’s Chief Development Officer. 

The company is planning to submit a Pre-Investigational New Drug (IND) application to the Food and Drug Administration for a Phase 2a proof of concept study of LSD (lysergic acid diethylamide) in the second half of 2021.

MindMed will have to clear some high regulatory hurdles. LSD, psilocybin, MDMA (Ecstasy) and other psychedelics are classified as Schedule I controlled substances, meaning they have a high potential for abuse and currently have no accepted medical use in the United States.

Don’t Worry Be Happy: Why People Turned to Cannabis During the Pandemic

By Pat Anson, PNN Editor

Demand for medical cannabis rose significantly in the U.S. during the pandemic, according to a new study that found many Americans turned to cannabis to relieve stress and make them feel happy.

The study was conducted by Veriheal, a telemedicine company that helps connect patients with licensed marijuana doctors and dispensaries.

In reviewing a database of over 125,000 Veriheal patients from January 2020 to March 2021, researchers found that applications for medical cannabis cards spiked during waves of Covid-19 infections, and as social unrest grew over the presidential election and the murder of George Floyd.

"Medical cannabis has traditionally been viewed as an alternative treatment for relieving physical pain and chronic ailments," said Maha Haq, CEO of Cultivating Research Education and Advocacy Group (CREA), a research firm that studies psychoactive drugs like cannabis and psychedelics.  

"That most people are actually looking to the plant to ease psychological stressors, often related to external social upheaval, is an incredibly important discovery that helps medical professionals better understand evolving consumer relationships with cannabis, and from there, improve the quality of their treatment and related mental healthcare programs." 

Asked what was the primary effect they wanted to get from medical cannabis, nearly half of patients (46%) picked “Happy” and less than a third (29%) said pain relief. Other patients said they used cannabis to help them relax, sleep, feel mellow or more focused.

The chart below shows that sign-ups and appointments for cannabis consultations rose sharply during stressful periods; when there were spikes in COVID-19 infections, last summer’s Black Lives Matter protests, and the insurrection at the U.S. Capitol in January 2021.

SOURCE: VeRIHEAL

SOURCE: VeRIHEAL

Researchers say the findings indicate that new cannabis consumers – at least during the pandemic -- were more likely to use cannabis to improve their mental and emotional health, as opposed to treating pain and other physical symptoms.  

“We found that people are seeking psychological relief in response to exogenous shocks including COVID-19 and beyond. Periods of social unrest, such as the Black Lives Matter protests and 2020 elections, can be seen as spikes in medical cannabis interest within our datasets," said Haq.

Positive Views About CBD Products

Most pain patients have favorable views about medical cannabis, according to a second, smaller survey of people being treated at pain management clinics in southern California. The findings were recently published in the Journal of Pain Research.

Researchers recruited 253 patients to participate in the survey, most of whom were on Medicaid or Medicare and had low incomes. Nearly two thirds (62%) said they had tried a CBD product in different formulations, including those containing THC.

Most CBD users said it significantly reduced their pain (59%) and allowed them to reduce or stop their use of pain medication (68%), including opioids (54%).  

CBD was particularly effective for those suffering from back pain (67%) and nerve pain (47%), and less effective for patients with fibromyalgia (21%) and migraine (33%).  

“While the familiarity with dosing was mixed and participants used a wide variety of products including products containing THC, they report that these products have helped them with many different pain-involving and neurological conditions,” wrote lead author Jan Schilling, MD, Scientific Director of Vitamed Research. “This cohort also reported that products both with and without THC have helped them to reduce overall pain medication and more specifically opioid medication.”

Most respondents believed that CBD was a good treatment option, not harmful and not addictive. About half said they would be more comfortable if their physician prescribed CBD products.

Task Force Calls for Update of Canada’s Opioid Guideline

By Pat Anson, PNN Editor

A task force created by Health Canada to study the needs of nearly 8 million Canadians with chronic pain has released its third and final report, saying there is an urgent need for the federal government to address untreated pain and improve access to pain care.

"It is a critical time for action to address unmanaged pain across Canada. Chronic pain is largely invisible and for too long people with pain have faced stigma and had to navigate significant gaps in access to care,” said Fiona Campbell, MD, Co-Chair of the Canadian Pain Task Force.

The task force report – “An Action Plan for Pain in Canada” – calls for more pain research, improved training for pain care providers, and better coordination of government pain policies.

Notably, it also calls for an expansion of Canada’s 2017 opioid prescribing guideline, even while acknowledging the problems the guideline has caused by making access to opioid medication more difficult.   

“Efforts to address opioid-related harms have led to serious and unintended consequences for some people living with chronic pain, including unmanaged pain, increased stigma, reduced access to care for people who use opioids for pain relief, and preventable deaths,” the task force reported. “Despite widespread decreased opioid prescribing, and investments in a continuum of harm reduction, treatment, and prevention initiatives, there are record high numbers of overdose deaths in Canada.”

The report said the guideline should be updated “to better balance the risks of opioids with the risks of opioid discontinuation.” Additional guidance was also needed for treating short-term acute pain, alternatives to opioids, interpreting dose limits, and “best practices in deprescribing.”

The Canadian guideline was modeled after the CDC’s 2016 opioid guideline, which is being updated for many of the same “unintended consequences.” Opioid prescribing in the U.S. is at 20-year lows, while overdose deaths are at record highs.

‘Rearranging the Deck Chairs’

Some critics were unimpressed with the task force report, saying it equates opioids with addiction and doesn’t address how to improve access to opioid pain relievers.

“Health Canada’s Pain Task Force has finally finished rearranging the deck chairs on a ship that sank a decade ago,” Barry Ulmer, Executive Director of the Chronic Pain Association of Canada, said in a statement. “More and more Canadians suffer serious ongoing pain and, since 2011, fewer and fewer opiates — still the only proven remedy for serious acute and chronic pain — are prescribed to treat it.

“Unsurprisingly, a record rise in overdose deaths among those suffering from addictions who can’t find safe supply is tracking the crackdown and the rise of untreated pain, along with suicides among abandoned patients.” 

The task force said there was an “an emerging consensus” on how to improve pain care in Canada, and that it was up to Health Canada and the federal government to fund and combat a public health emergency.    

"People living with pain deserve relief from their pain, reassurance that they matter, and access to services required to improve their quality of life. We will continue to work with people with lived and living experience, as well as our partners and stakeholders, to explore new approaches and determine our next steps,” said Minister of Health Patty Hajdu.

Hajdu also announced that a $2.8 million grant was being given to the Toronto-based Centre of Effective Practice to provide treatment to patients living with addiction, mental illness and chronic pain. The funding comes from a Health Canada substance abuse program.

Oklahoma Law Protects Pain Patient Rights

By Pat Anson, PNN Editor

Oklahoma Gov. Kevin Stitt has signed into law bipartisan legislation that amends a state law regulating opioids and other controlled substances to better protect pain patients from forced opioid tapering and dose limits.

SB57 was passed unanimously by the Oklahoma House and Senate last month, and signed by Gov. Stitt on Monday. Patient advocates worked hard over the last few months to make changes to the state’s Anti-Drug Diversion Act, which imposed several limits on opioid prescribing.

One key amendment emphasizes that “individualized treatment” be provided to patients without tapering or mandatory dose limits, something that has been implemented around the country since the CDC released its controversial opioid guideline in 2016.

“Nothing in the Anti-Drug Diversion Act shall be construed to require practitioner to limit or forcibly taper a patient on opioid therapy. The standard of care requires effective and individualized treatment for each patient as deemed appropriate by the prescribing practitioner without an administrative or codified limit on dose or quantity that is more restrictive than approved by the Food and Drug Administration.”  

“I am so proud of Oklahoma for taking the side of the doctors and formally recognizing the FDA over the CDC. This starts the process of forcing control of regulating medicine back to the states where it always should have been,” said Tamera Lynn Stewart, National Director of the P3 Alliance (formerly known as the C50 Alliance), a patient advocacy group.

Stewart and other advocates were successful in getting further changes to the bill, such as requiring that patients be given access to their prescription drug monitoring program (PDMP) records; expanding the exemption for treating cancer pain with opioids; and clarifying that a palliative care provider does not have to be connected to a licensed hospice.  

“On the Senate floor, all of those changes were read out loud and it was still voted unanimously to pass it. All 151 of our legislators are 100% on board,” said Stewart.

It wasn’t easy. This was Stewart’s third legislative session as a patient advocate in Oklahoma. She made a point of attending every meeting that involved opioids, with help from P3 advocates Kari Kruska, Mark Reese, Julia Heath and Lawrence Pasternak.

Asked what advice she would give other advocates seeking to change legislation in their states, Stewart said it was important to stay visible and meet with as many lawmakers as possible.  

“Keep pushing. Keep advocating, not in an intimidating or fearful way, but being in front of them as often as possible,” she told PNN. “I learned a ton about how political this issue really is and it scared the hell out of me.”

Stewart said many lawmakers and regulators are aware that restrictive opioid policies are harmful to patients, but they are reluctant to speak up or even seek input from patients.

“I kind of forced my way in,” she explained. “I showed up at the public meetings. And if there was a public comment period, I stood up and spoke.”

The Oklahoma law is similar to a state law adopted in New Hampshire last year, which requires doctors and pharmacists to consider the “individualized needs” of pain patients and ensure they are “not unduly denied the medications needed." All decisions regarding pain therapy are left to providers who are required to treat patients “without fear of reprimand or discipline.”

What Would Sherlock Holmes Say About the Opioid Crisis?

By Carol Levy, PNN Columnist

“It is a capital mistake to theorize before you have all the evidence. It biases the judgment.” — Sherlock Holmes

It is also a mistake to mischaracterize or lie about evidence. But this is what is happening with the opioid crisis and with pain patients. Here’s an example of theorizing about opioids by Johns Hopkins Medicine in “The Science of Addiction.”

“For some time in this country we believed patients weren’t at risk of addiction. No one knows for sure the percentage of those who are at risk. What we do know now through an annual survey of drug use in the U.S., when people were asked if they had used heroin, researchers found that 50 percent of those who had also had a longtime history of opioid use and 50 percent of those went on to have problematic heroin use.”

One would have hoped Johns Hopkins would do better than “No one knows for sure” and then openly theorizing that pain patients inevitably become addicted to opioids and that many turn into heroin addicts.

There is no explanation of who had a “longtime history of opioid use,” what type of opioids they started with, or why they turned to heroin. But this is the kind of public messaging we see all the time about opioids and pain patients. 

Recently on the KevinMD medical blog, a pediatrician posted his story of the struggles he had as a medical student and doctor getting diagnosed for fibromyalgia. He also wrote about the problems he had getting appropriate treatment and how many of his colleagues were questioning whether fibromyalgia was “real” or not. 

A physician left a comment to the article (since deleted) saying this: “In my experience with musculoskeletal disease, at least 50+% of those who have been given the diagnosis, really don't have a disease other than secondary gain, ie, disability and pain meds.”  

I replied with a comment of my own: “It sounds like you have a bias against those whose complaint is body pain; and I have to assume that includes those with dx (diagnosis) of fibro and CRPS. It is people like you who make it so much harder for people like us to get proper care from the medical community.”  

The physician responded with: “You're probably partially right.” 

It’s a sad commentary, but a perfect example of a doctor theorizing about his patients with no data or evidence, except that they are coming to him with a pain complaint. We know the problems with both issues: Pain patients are given opioids. There is an opioid crisis. Who better to go after than people who need opioids for a medical reason? 

Our pain is invisible. Doctors mostly have to rely on what we tell them about our pain. It is a lot easier for them to say, “I don’t believe this patient” than to take the time to truly evaluate not only our pain, but what it has done to our lives. How our functioning and interacting in the world has been impacted by the disability caused by the pain. That is evidence. Disbelief is merely theory. 

This reminds me of another Sherlock Holmes story:

 Holmes and Watson are on a camping trip. In the middle of the night Holmes wakes up and gives Dr. Watson a nudge. "Watson," he says, "look up in the sky and tell me what you see."

"I see millions of stars, Holmes," says Watson.

"And what do you conclude from that, Watson?"

Watson thinks for a moment. "Well," he says, "astronomically, it tells me that there are millions of galaxies and potentially billions of planets. Astrologically, I observe that Saturn is in Leo. Horologically, I deduce that the time is approximately a quarter past three. Meteorologically, I suspect that we will have a beautiful day tomorrow. Theologically, I see that God is all-powerful, and we are small and insignificant. Uh, what does it tell you, Holmes?"

"Watson, you idiot! Someone has stolen our tent!”

Like Watson musing about the stars, we are constantly told that opioids are addictive and therefore patients on opioids must become addicted. They can't see our pain on an x-ray or in our blood work, so therefore it must not exist.

I'll give Mr. Holmes the last word: “There is nothing more deceptive than an obvious fact.”

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.”

 

Most Older Adults Don’t Tell Doctors About Their Cannabis Use  

By Pat Anson, PNN Editor

A growing number of older adults have discovered the medical benefits of cannabis – everything from pain relief to lower blood pressure. But a new study found that most older Americans aren’t telling their doctors about their cannabis use.

In an analysis of over 17,000 Americans aged 50 and older who participated in the 2018 and 2019 National Surveys on Drug Use and Health, researchers at the University of Texas at Austin found that nearly nine percent had used cannabis in the past year. Of those, less than 40% had discussed their cannabis use with a healthcare provider.

Researchers say that’s an alarming figure because the cannabis users were significantly more likely to have substance abuse and mental health problems than nonusers.  

“Only a minority of older cannabis users discussed their drug use with a healthcare professional, although medical users were more likely than nonmedical users to have done so,” said lead author Namkee Choi, PhD, Professor of Gerontology at the University of Texas at Austin.

“Given little difference in cannabis and other substance use/use disorders between nonmedical and medical users, older cannabis users, regardless of use reasons, should consult healthcare professionals about their use, and healthcare professionals should screen for cannabis and other substance use as part of routine care.”

Compared to recreational users, medical users consumed cannabis more frequently, with nearly 40% using it everyday or a few times each week. Surprisingly, less than 20% of medical users bought their cannabis from a dispensary; most obtained it from friends, family or strangers. About 95% of medical users said obtaining cannabis was fairly easy or very easy.

“The finding that a significant proportion of medical and nonmedical users obtained cannabis via private/informal sources indicates that they are likely to use cannabis and cannabis products with unknown tetrahydrocannabinol (THC) potency,” said Choi. “Given the increase in THC potency, healthcare professionals should educate older cannabis users, especially high-frequency users, on potential safety issues and adverse health effects of cannabis and cannabis products obtained from unregulated sources.”

The study findings were published in The American Journal of Drug and Alcohol Abuse.

A 2018 survey by the American Association of Retired Persons (AARP) found that most older Americans think marijuana is effective for pain relief, anxiety and nausea. Seventy percent of those surveyed say they would consider asking their healthcare provider about medical marijuana if they had a serious condition that they thought might respond to it.

A recent study published in the journal Cannabis and Cannabinoid Research found that older adults are more likely to purchase sublingual formulations of cannabis, such as edibles and tinctures, as well as products low in THC and high in CBD.

Finding Hope in the Strange Medical Saga of Howard Hughes

By Donna C. Gregory

During much of the 20th century, Howard Hughes was known as a risk-taking aviator, award-winning filmmaker and playboy to Hollywood starlets. But there was another side of Hughes’ life that only his physicians and those closest to him knew.

There was actually a medical reason behind Hughes’ odd, daredevil personality. He lived with obsessive-compulsive disorder for most of his life, and that condition likely contributed to him sustaining multiple traumatic brain injuries and ultimately developing intractable pain syndrome in his later years.

During the 1950s, when Hughes disappeared from public life, most people believed his reclusive lifestyle was due to his eccentric personality, when in fact he was so debilitated by chronic pain that he was mostly housebound.

Forest Tennant, a retired physician who specialized in addiction and pain medicine for most of his medical career, has investigated Hughes’ medical history for nearly 50 years. In 1978, Tennant testified as an expert medical witness in a lawsuit related to the cause of Hughes’ death.

Now, more than 40 years later, Tennant has chronicled Hughes’ fascinating medical history into a new book entitled, “The Strange Medical Saga of Howard Hughes.”

I recently spoke with Tennant about his book. We hope you enjoy this long-form interview.

During the 1970s, you were an expert witness during a lawsuit related to the cause of Howard Hughes’ death. What inspired you to write the book now?

Forest Tennant: We did not know, from a medical point of view, what happened to Howard Hughes because we didn't understand his injuries. We knew that he was ill. We knew he was sick. We knew he was a recluse. He had all these different problems, but we really didn't know what had happened to him. We didn't understand intractable pain syndrome and traumatic brain injury until just in recent years.

The second reason why I've chosen now to write it is that it dawned on me that I have all this information, and I now have the time to do it and the interest. A few years ago, I wrote a small paper about Howard Hughes, Elvis Presley, John Kennedy and some of the other famous people who had pain problems, and it was such a hit that I decided to take what I know before I pass on and get it down and write it so it will be kept for posterity.

I've come to realize that some of these famous people have these strange medical sagas. Bizarre medical histories should be put down as history and cataloged as history for the future.

[There’s a] third reason why I decided to write [this book] now. I think everybody who has one of these conditions ought to read [about] their history.

Why do you think it’s a good idea for people with traumatic brain injury, intractable pain syndrome or obsessive-compulsive disorder to read your book?  

First off, it'll give you hope. I think one needs to understand that there was a man who suffered terribly and was able to function and perform beyond any human expectation despite being terribly ill.

I think that's a point that's gotten lost in all the glamour and the money and the politics of the day. People forget that sometimes somebody who's terribly ill, has pain and suffering, but still wants to contribute, can do it.

Howard Hughes had the money to hire the best [physicians]. He got the best medical care there was. People [today] think in terms of one drug for this illness, one vaccine for this virus [but physicians back then] just didn't prescribe medicines or give a shot. They were real doctors who did a lot of different things to help people survive to the maximum that their diseases would allow, and I think that this is very important for people to understand.

And Howard Hughes, you just couldn't find a better story or a person who survived against all odds.

After about ten years [following his plane crash in 1946], here was a man who could hardly be in the public. He's in pain. He can't even cut his fingernails or comb his hair half the time because it hurts too bad. He obviously can't have a marital life. His sex life is gone. He can't work normally.

Yet he decides ... in 1966, at age 60, to change his career. He decides he's going to give up aircrafting and making drones and financing all that stuff and move to Las Vegas. Go into creating a new Las Vegas, which exists to this day. For someone at his age to do that, and as sick as he was, is amazing.

640px-Howard_Hughes.jpg

Even though Hughes was amazingly successful throughout his life, how debilitated do you think he was as a result of living with traumatic brain injury, intractable pain syndrome and obsessive-compulsive disorder?

He had five airplane crashes and survived. They say cats have nine lives. I think I said in [the book that] Howard Hughes must have been a buddy of those cats.

About 10 years after his last crash, he was … homebound or bedbound and in palliative care. He also got to the point where he couldn't walk after his hip surgery, so he was quite debilitated. People think that he was just a recluse because he was a nutty character, but after about age 55, he was really not very capable of showing up in the public, and he didn't.

People that I have treated, and I've treated many who are about as sick as he was, they all are homebound or bedbound. They're not interested in going out to a lot of social events or even shopping. They're pretty reclusive.

In his case, he could afford a luxury suite in a hotel with the best doctors and aides. Somebody wrote a book and said, "Howard must have been very miserable and sad and alone." This guy had people around him right up to the day he died and the best hotels, the best food and everything. A lot of people would trade their nursing home for what he had!

That's definitely a different way of looking at Hughes. Most of the general public just thinks he was eccentric but that’s not why he was a recluse, was it? It was actually because he was living with severe chronic pain.

Another thing, in those years there was no treatment for these things. Nobody knew how to treat obsessive-compulsive disorder. Incidentally, he started taking Valium when it came on the market. His doctors prescribed it to him in about 1962 or 63. He actually started to function much better.

But again, he's having to take codeine every couple of hours. He takes Valium. He overuses medicines at times, but he was also legitimately sick with his traumatic brain injury, his obsessive-compulsive disorder and his intractable pain syndrome. He had three terrible conditions which, at the time of his life, no one knew how to treat any one of the three.

He was obviously very, very wealthy, and he was able to afford the best doctors in the world. But I think it's interesting, and this happens even today, that even if you have all of the money in the world, sometimes the best doctors still can't get you well. This was the case for him, wasn’t it?

Oh, absolutely. They were the very best doctors that Los Angeles had to offer. They were highly qualified. Incidentally, I'm the last person to probably ever talk to his last three doctors, the three doctors that were caring for him when he died. I got a chance to meet all of them and talk with every one of them, and these were first-class doctors.

They just told me they knew two things about his case. They knew that he had a strange medical condition. They knew that he was different but they didn't know why. So fundamentally, they were treating symptoms as they came up with Hughes.

They did a good job of treating what they knew and what they could do. It's always great to sit here 30 years later and say, "Oh, the doctors should've done this and done that," but you'd better ask the question was that medicine or that procedure even known at the time? And, in Hughes' case, it just wasn't.

How would his treatment differ today?

Oh, dramatically. I am sure that he would've been put on medicine to control his obsessive-compulsive disorder, probably in his teens or in his 20s. It was his obsessive-compulsive disorder that was his undoing.

In 1929, he was done making this film, “Hell's Angels,” and you'll see it in the book he decides to fly this scout plane. All the experts told him, "Don't fly that plane under 200 feet above the ground [because] it's going to crash."

Well, [with] his obsessive-compulsive disorder, [his viewpoint] was, "You can't tell me what to do. I know everything."

So he goes ahead and does it, and sure enough he crashes and has head trauma. After that, he was never the same.

But I think as bad of obsessive-compulsive disorder as he had, today I am sure that he would've gotten into the hands of a good psychiatrist or a good neurologist or even internists today and put on some of the medications that are available for that condition. [If that had happened], he may never have had all those head traumas. You'll see in the book how many traumatic instances this guy had.

640px-Howard_Hughes.jpg

The medications that he was given, the codeine for intractable pain syndrome, is not a very good medication. Of course, back then, there was no such knowledge on intractable pain. There was no such knowledge of long-acting versus short-acting opioids or neuropathic agents, to say nothing of other new drugs we're using. So it would’ve been a whole different situation.

My hope is when doctors read [the book], they would understand that Howard Hughes would not have to end up like he did with today's treatment. I think that's one of the bottom lines, medically, of his history. You don't have to end up like Howard Hughes because we have the technology to take care of it.

And also, modern medicine is highly criticized, like practically everything today, but so many advances have been made in the last generation or two that you don't have to see what happened to Hughes. He would have gotten treatments that would be quite different. I think that the medical profession and even the pharmaceutical profession can give themselves a little pat on the back after you read about these cases because we have things that we can do now.

So he may not have ended up with the traumatic brain injuries and the intractable pain syndrome if his obsessive-compulsive disorder was properly treated back then?

Absolutely. That was his undoing. It's kind of harmless to see somebody putting their peas in a straight line or compulsive hand washing and that type of thing but the bad part of it is you lose your ability to do rational thinking. That's what got him into trouble. His total lack of following protocol in 1946 is what gave him that terrible crash that put him into intractable pain syndrome and reclusivity.

He had all this engineering genius, but he just made terrible, irrational decisions at times, like flying that airplane when all the best pilots in the country told him, "Don't do it. That plane won't make it." But he wouldn't take advice.

So those are the kinds of things that get people into traumatic brain injuries. Then, when you get traumatic brain injury, you're even more impaired mentally.

Some of the things this guy did were just unbelievable. Crazy things like he only had 30 minutes of gas, but he tried to fly it 40 minutes. They weren't supposed to fly with the wheels up, so he put them up. There's a whole list of things he wasn't supposed to do that he did, and that's not normal mentally. He wasn't just eccentric. He really was mentally impaired. I'm surprised somebody hadn't shot him or [that he hadn’t] done himself in.

His behavior actually got better after he got on his medication for his pain. His codeine and his Valium seemed to control his bad behavior to some extent.

How did people’s opinions of opioids differ back then compared to now?

Back then, Dr. Mason, [one of Hughes’ doctors] told the press one time in about 1947 or so, "Yeah, we give him the codeine because he's in pain and needs them."

That was the end of the discussion. In other words, when I got into this business in the 1970s after Vietnam, we didn't have all this controversy [about prescribing opioids]. The emotionalism, the condemnations of both physicians and patients, the hysteria of opioids, this is new in society. There wasn't near that kind of stigma back in Howard Hughes' day.

Sounds like things were much easier back then.

Much simpler and much better. We did much better pain treatment for many severe cases in the 1970s and 1980s than we do today.

Today, everybody has an opinion and nobody agrees. I'm kind of hoping that when people read about these famous people who all took narcotics for pain that maybe the patients won't feel so bad. Maybe the doctors will also see something.

It's probably Pollyanna-ish thinking, but I would hope the history of these famous people who Americans revere might bring a little tranquility and some common sense to the use of opioids. We're still going to need them. We can't get along without them. We're certainly decreasing use of opioids for good reason. We're getting alternatives for a lot of patients, but they're still going to be needed for some people.

“The Strange Medical Saga of Howard Hughes” is available for purchase on Amazon.com and BN.com. In the future, Tennant plans to release the strange medical sagas of John F. Kennedy, Elvis Presley and Doc Holliday. All proceeds go to the Tennant Foundation, which gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Donna C. Gregory was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook, Twitter and Pinterest. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania.

COVID Vaccine Anxiety: What If You Are Immunocompromised?

By Cynthia Toussaint, PNN Columnist

In the midst of our once-in-a-century pandemic, it’s my deep belief that we all have a responsibility to get the COVID vaccine in hopes of extracting ourselves and each other from this crisis. We’re in this together, and if we do our part, we’ll get out of these dire straits faster and with fewer deaths.

That being said, there’s no doubt that getting a full dose is a rockier, less certain road for those of us who are immunocompromised, whether by current treatment (organ transplant, chemotherapy, etc.), wrangling with years of severe chronic illness, or both.

It disturbs and angers me that we were left out of the vaccine trials, but we can’t fight or fix that familiar marginalization now. We also can’t use that as an excuse to sit on the sidelines.

Courage remains our best ally.

Before my first vaccine, I was facing surgery for cancer and was frantic to get dosed as older folk at my swimming hole were already going mask-less. I couldn’t afford to be left behind because my upcoming treatment was dangerous and I was labeled “highest risk” for severe COVID – this due to being immunocompromised from four decades of high-impact pain and five months of chemotherapy.

With that first poke, I was relieved to initially go relatively unscathed, side-effect wise, with only a headache and “COVID arm.” But that arm soon went to hell. For four days I couldn’t move it without shrieking. I imagined this would be the feeling of a bullet piercing my skin, something I’ve heard from other immunocompromised sisters. More bizarre, after my COVID arm eased, it returned a week later with the damp weather.

When my second vaccine date approached, I was anxious, feeling like a guinea pig because even healthy people were getting pretty darn sick with this bookend dose. It spooked me to see the fear in the eyes of my 40-year partner and caregiver after he got his. John rarely gets sick, but his two-day bout with crippling fatigue reduced him to someone struggling to take care of himself, let alone being there fulltime for me.

But I persisted.

Just after receiving that dose, I posted my concern on Facebook, and someone was kind enough to share a National Public Radio article about immunocompromised people and the vaccine. The article supported my firm belief that everyone needs to be vaccinated, while pointing out that as a result of not being part of the study group, its efficacy was not entirely known.

Additionally, researchers urged us to work with our doctors to time treatment with the vaccine for safety and effectiveness – as immune deficiency can compromise potency. I was troubled that my doctor hadn’t weighed these considerations when urging me to get the vaccine pronto.

I had one bone to pick with the article. It mentioned that enough immunocompromised folk had been vaccinated to gain assurance that it would not ignite a flare, stating that side-effects often resembled auto-immune symptoms. I was dubious as most everyone I know with pain had flared significantly.

Still, I’d made my decision. I threw caution to the wind and gingerly decided that I’d respond like a healthy person. I was only going to be sick for a couple of days.

Side Effects From Second Dose

At first I was on track with just a few symptoms, including that familiar headache and low-grade COVID arm. But by the first night, I was quite ill. High fever, chills, fatigue and muscle aches. While those symptoms can be part of a bad reaction for a healthy person, my illness lasted longer than what would be expected. In fact, I was sick for almost a week.

And oddly, mid-week after my fever broke, I woke in the night super-hot, sweaty and chilled again. I suspect I was having a vaccine relapse, something I’ve not heard from others. It didn’t come as a surprise that my CRPS flared badly that week too.  

What threw me for a loop was having many of my long-gone, chemo side-effects return. I had severe spatial difficulties, causing me to run into walls and spill glasses of juice. More unpleasant reminders of those wretched days included distorted eyesight and hearing, a bladder infection, my heart beating too hard, neuropathy, anemia and painful joints and muscles. In fact, one day my hamstring (the original site of my CRPS injury) sprung out of place and I screamed bloody murder until it popped back, allowing me to move.

While those troubles have mostly resolved, my worst two chemo redux symptoms are hanging on a bit longer. Today, five weeks after that shot, I’m still having a hard time holding my back up straight without pain, something unsettling for this former ballerina who prides herself on proper posture.

Perhaps worse, my food tastes a bit like there’s chemo in it. I can get through meals without needing a barf bag, but recently gagged on my water for the first time, post-chemo. At times it’s difficult to touch my tongue to my teeth and to breathe in, due to the rancid taste. 

Despite it all, I’m on the mend and ecstatic that I’m fully vaccinated. It feels damn awesome to know that I made the best self-care decision and the best one for the world. When I get news of friends dying from COVID or see photos of people in the ICU, intubated and at the edge, this is a no brainer. The vaccine is far less dangerous than the virus, and everyone has to pull their weight.

Before rolling up your sleeve though, I advise that, if you are immunocompromised, be prepared to have a longer, more severe adverse reaction. Many of my sisters in pain did, and I had a much tougher road due to chemo. So, stock up your pantry, prep some meals, make accommodations for work and kids and be prepared to bunker down for a spell. Also, I think you’d be wise to have a discussion with your doctor to determine best timing to minimize suffering and optimize efficacy. 

Let’s keep this in mind. We, the mighty immunocompromised, are tougher than the rest. We’re independent, having learned through the most rugged of knocks how to care for ourselves. We also tend to think of others – as we know going it alone is a one-way ticket to malady.  As such, we know the importance of keeping our loved ones and communities healthy.

We can do this. The decision to get the vaccine is about being kind to ourselves and to each other. And in my book, that’s what life is only and all about.              

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has had Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for nearly four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

How Do Opioids and NSAIDs Compare for Chronic Pain?

By Roger Chriss, PNN Columnist

With the ongoing push to reduce opioid prescribing because of the risk of addiction and overdose, claims that non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen are better have become common.

Dr. Andrew Kolodny, founder of Physicians for Responsible Opioid Prescribing (PROP), recently claimed that “NSAIDs are as effective and in some cases more effective than opioids, even for excruciating painful conditions.”

But it’s not that simple. There are few research studies that directly compare opioids and NSAIDs, and little progress has been made since I wrote about this issue in 2017.

The best we can do is to look at Cochrane reviews of opioids and NSAIDs for specific types of pain management. The Cochrane organization provides unbiased, systematic reviews that are widely accepted as gold-standard evidence.

Cochrane on Opioids

A 2010 Cochrane review found that that opioids for long-term non-cancer pain may be useful in select patients and that opioid addiction was rare.

“Many patients discontinue long-term opioid therapy (especially oral opioids) due to adverse events or insufficient pain relief; however, weak evidence suggests that patients who are able to continue opioids long-term experience clinically significant pain relief,” the authors concluded. “Many minor adverse events (like nausea and headache) occurred, but serious adverse events, including iatrogenic opioid addiction, were rare.

More recent Cochrane reviews found that opioids provide some benefit for restless leg syndrome and rheumatoid arthritis, but little for osteoarthritis.  For neuropathic pain, the results are mixed.  

“Short-term studies provide only equivocal evidence regarding the efficacy of opioids in reducing the intensity of neuropathic pain. Intermediate-term studies demonstrated significant efficacy of opioids over placebo,” reviewers found. “Analgesic efficacy of opioids in chronic neuropathic pain is subject to considerable uncertainty.  Reported adverse events of opioids were common but not life-threatening.”

For specific opioids, results vary. Cochrane found limited, low-quality evidence for oxycodone for neuropathy. Findings for tramadol were discouraging for neuropathic pain and osteoarthritis.

But extended release tapentadol (Nucynta) provided better pain relief for musculoskeletal pain than oxycodone and placebo, although “the clinical significance of the results is uncertain.”

Cochrane on NSAIDs

The findings for NSAIDs are similarly mixed and the type of pain matters a lot.

For chronic low back pain, Cochrane found that in about half of clinical trials NSAIDs were more effective than placebo for reducing pain and disability, but “the magnitude of the effects is small, and the level of evidence was low.”

For neuropathic pain in adults, a Cochrane review found “no good evidence to tell us whether or not oral NSAIDs are helpful to treat neuropathic pain conditions.”

For kidney stone pain, Cochrane found that “NSAIDs were more effective than other non‐opioid pain killers including antispasmodics for pain reduction.”

For fibromyalgia, the evidence for NSAIDs is weak, with reviewers concluding that “NSAIDs cannot be regarded as useful for treating fibromyalgia.”

And for chronic non-cancer pain in children and adolescents, Cochrane reports that “we have no evidence to support or refute the use of NSAIDs.”

Of course, what works for an individual cannot necessarily be predicted from a Cochrane review. Clinical decision-making involves a risk/benefit assessment, with consideration for each patient’s specific circumstances and close follow-up to monitor outcomes. Safety is paramount as well, in particular for drugs like opioids that have significant risks.

In sum, it is difficult to make a blanket statement about opioids versus NSAIDs for chronic non-cancer pain. Results vary by specific opioids and type of pain. We need better studies to inform clinical practice and improve patient outcomes.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

Study Estimates Two Million Americans Use Kratom

By Pat Anson, PNN Editor

A new study estimates that less than one percent of Americans -- about two million people --- use kratom, an herbal supplement that’s growing in popularity as a treatment for pain, depression, anxiety and addiction.

The study, one of the first to look at kratom use in the general population, is based on data from the 2019 National Survey on Drug Use and Health – the first year the annual survey asked respondents about kratom.

Researchers at New York University’s Grossman School of Medicine looked at data from over 56,000 people who participated in the survey and estimated that 0.7 percent of adults and adolescents in the U.S. used kratom in the past year.

Kratom use was more likely by people who also use cannabis, stimulants and cocaine, and was particularly common among those who misuse prescription opioids. About 10 percent of people diagnosed with opioid use disorder reported kratom use.

“It was not surprising at all that such a large portion of people with opioid use disorder use kratom. What I didn’t expect was to find kratom use to be independently linked to cannabis use disorder,” said study author Joseph Palamar, PhD, an associate professor of population health at NYU Grossman School of Medicine.

“A lot of people who use substances to get high also use other substances to get high — alone or in combination. If anything, I hope that results of this paper demonstrate not only that a lot of people with opioid use disorder use kratom, but also a lot of people who use other drugs have been adding this substance to their drug repertoires for whatever reason.”

Men, white people, and those with depression and serious mental illness were also more likely to report using kratom. Teenagers and adults over 50 were less likely to use it.

The findings are similar to those in a 2016 PNN survey of over 6,000 kratom users. A little over half said they primarily used kratom for pain relief, while others used it as a treatment for anxiety (14%), opioid withdrawal (9%), depression (9%) and alcoholism (3%).  Over 90% said kratom was “very effective” in treating their medical condition.   

“A lot of people who use kratom rave about its ability to decrease opioid withdrawal, but kratom itself can be addicting so people need to be aware and be careful. Kratom might indeed be able to serve as a useful tool for people seeking to get off opioids, but I think more research is needed to determine exactly how it should be used and how to use it safely,” Palamar said in an email to PNN.

The study, published in the American Journal of Preventive Medicine, notes that over 150 overdose deaths linked to kratom have been reported. But most of those overdoses also involved other drugs such as illicit fentanyl, heroin and cocaine, or prescription drugs such as benzodiazepines and psychiatric medications.    

“Given the high number of poisonings involving kratom combined with other drugs, I hope that at least people who decide to use it try to avoid combining it with other substances,” Palamar said.

Kratom comes from the leaves of a tree that grows in southeast Asia, where kratom has been used for centuries as a natural stimulant and pain reliever. Kratom can be sold legally in most U.S. states, but vendors can run into trouble if they claim it can be used to treat medical conditions. The FDA says it has “serious concerns” about kratom because of its opioid-like properties.

A 2020 study funded by the National Institute on Drug Abuse concluded that kratom is an effective treatment for pain, helps users reduce their use of opioids, and has a low risk of adverse effects.

The American Kratom Association, an advocacy group for kratom consumers and vendors, claims that 10 to 16 million Americans use kratom. That estimate is based on exports to the U.S. reported by kratom growers in Indonesia.

Chronic Pain Linked to Memory Loss in Some Older Adults

By Pat Anson, PNN Editor

A new study suggests that people who live with chronic pain may be at higher risk of memory loss and cognitive decline if they have lower levels of education, income and access to healthcare.

The study by researchers at the University of Florida, published in the Journal of Alzheimer’s Disease, involved 147 adults between the ages of 45 and 85 who had mild to moderate knee pain. Participants enrolled in the study were asked to provide sociodemographic information, complete an assessment of their cognitive function, and have MRI brain scans.

People with higher pain levels who had low levels of income and education, and less access to health insurance had about 4% less gray matter in the temporal lobe of their brains (the area shaded in blue) compared to people with low pain levels who had more income and education, and greater access to healthcare.

“As we get older, typically starting around our mid-50s to mid-60s, we lose about half a percent of our gray matter per year,” said lead author Jared Tanner, PhD, an assistant professor of clinical and health psychology in the UF College of Public Health and Health Professions. “So a 3-4% difference could be thought of as an additional six to eight years of aging in the brain.”

The thinning of gray matter is predictive of future cognitive decline and greater risk of developing dementia or Alzheimer’s disease.

Tanner and his colleagues have been investigating how chronic pain acts as a stressor that causes physiological changes in humans. Other researchers have found that Black adults are up to twice as likely as White adults to develop Alzheimer’s disease. The new findings indicate a variety of environmental factors might be involved, including access to healthcare.

“This study helps us begin to identify an additional factor to explore that may contribute to health disparities in rates of dementia and Alzheimer’s disease in some underrepresented ethnic/race groups. In this case, it looks like stage of chronic pain, along with other life experiences, may be playing a role,” said Tanner.

“The body and the brain are adaptive to stress to a certain point,” said senior author Kimberly Sibille, PhD, an associate professor of aging & geriatric research and pain medicine in the UF College of Medicine. “But with persistent stressors that are more intense and longer duration, eventually the body’s response is no longer adaptive and changes start occurring in the other direction, a process known as allostatic overload. 

“People with low pain stage — intermittent, low intensity, shorter duration and minimal sites of pain — differ from the groups with higher stages of chronic pain. Further, in combination with lower protective factors, including lower income, education and health insurance access, those individuals with higher chronic pain stage show less gray matter in cortical areas of the brain.”

A large 2017 study found that people aged 60 and older with chronic pain had faster declines in memory and cognitive ability than those who were not troubled by pain.

The brain may be able to regain some of its ability to function normally. A 2009 study of osteoarthritis patients showed a reversal in brain changes when their pain was adequately treated. 

Kolodny: NSAIDs ‘Just as Effective As Opioids’

By Pat Anson, PNN Editor

It’s fair to say that Dr. Andrew Kolodny is recognized as an expert in substance abuse. Koldony is board-certified in Psychiatry and Addiction Medicine, and for a few years was the Chief Medical Officer of Phoenix House, which operates a chain of addiction treatment centers. He now co-directs an opioid research program at Brandeis University.

Kolodny is also the founder of the anti-opioid activist group Physicians for Responsible Opioid Prescribing (PROP), has testified as a well-paid expert witness in opioid litigation, and is frequently quoted in the media about opioid painkillers, often calling them “heroin pills.”

But Kolodny is not board-certified in pain management and is not recognized as an “expert” in treating physical pain. So it was a bit of a surprise to hear him giving medical advice about over-the-counter pain relievers last week in a webinar held by the Partnership for a Drug-Free New Jersey.

"Many people don't know this, but the class of analgesic known as NSAIDs are as effective and in some cases more effective than opioids, even for excruciating painful conditions like renal colic. It's also called kidney stone pain. NSAIDs have been shown to be just as effective,” Kolodny said.  

Non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin and ibuprofen are widely used to treat minor pain and headaches, but they are not generally used for severe or chronic pain.  

We asked Mary Maston what she thought about Kolodny’s advice. She is an expert on kidney stone pain, having been born with a congenital disorder called medullary sponge kidney (MSK), which causes her kidneys to continually produce new stones.  

The class of analgesic known as NSAIDs are as effective and in some cases more effective than opioids, even for excruciating painful conditions.
— Dr. Andrew Kolodny

“I wholeheartedly disagree that NSAIDs are as effective and in some cases more effective than opioids,” Maston told us. “My first thought was, ‘I wonder if he's ever had a kidney stone?’ Ask any patient that has, whether they have MSK like me or not, and they will quickly tell you that over-the-counter NSAIDs do absolutely nothing for kidney stone pain. I have never encountered a single patient that has said they just took some Aleve and that took care of the pain even a little bit.” 

Kolodny was just getting started. He also recommended acetaminophen (Tylenol) as an alternative to opioids, and said it can be combined with ibuprofen (Advil) for even stronger pain relief. 

“Tylenol is not as strong a pain reliever as NSAIDs, but can for some people be very effective. And fortunately, you can actually combine a drug like Advil with a drug like Tylenol because they work differently. As long as a patient is able to take Tylenol and is able to take Advil, as long as they don't have a contradiction to taking those medications, they can even be combined,” Kolodny said. 

“The combination of Tylenol and Advil is actually first-line for wisdom tooth removal, even though in many cases dentists often still give drugs like hydrocodone or oxycodone to teenagers when their wisdom teeth come out. Tylenol and Advil combined gives better pain relief, with less side effects." 

“What he said about kidney stones is not correct. In fact, it’s cruel. What he said about tooth extractions is correct,” says Jeffrey Fudin, PharmD, an expert in pharmacology and pain management. “But encouraging expanded chronic NSAID use without preliminary discussion with a physician or pharmacist is bad and he is oversimplifying. Pain source, cause, quality and quantity all need to be assessed. 

“And he didn’t offer what should be done for those patients that can’t take NSAIDs due to medical disorders or who can’t tolerate them or they don’t work. What do we do, not treat them?” 

Risky Side Effects of OTC Drugs

NSAIDs and acetaminophen are widely used over-the-counter pain relievers, and both can have serious side effects. NSAIDs increase the risk of heart attacks and stroke, while excessive use of acetaminophen can cause liver, kidney, heart and blood pressure problems. A recent study found little or no evidence to support the use acetaminophen for most pain conditions.  

Kolodny, who does not speak with this reporter, briefly acknowledged some of those issues during the webinar. 

“Some patients have medical problems where they are not able to take an NSAID. And sometimes for severe acute pain there is a role for opioids. But that should always be very short-term use. Or if it's ever prescribed for a chronic pain condition, intermittent use, meaning not taken every day. Because when opioids are taken every day, quickly patients develop tolerance to the pain-relieving effect,” Kolodny said. 

“He makes it sound as though it’s either opioids or NSAIDS/acetaminophen,” Fudin said in an email to PNN. “There are lots of options that can be used instead of opioids or in addition to opioids other than NSAIDs/acetaminophen in an effort to combine multiple different pharmacological mechanisms permitting lower doses of several drugs.”

An over-the-counter pain reliever that combines ibuprofen and acetaminophen was recently introduced called Advil Dual Action, but it is marketed as a treatment for “minor aches and pains” such as headaches, toothaches and menstrual cramps. Nothing about severe pain, chronic pain or kidney stones.

“NSAIDs have been known to cause acute kidney failure in patients that have perfectly healthy kidneys, and my nephrologist says we don't want to tempt the gods,” says Mary Maston. “Once I explain this to ER doctors and anesthesiologists when I have surgery, they quickly nod and agree.”

Maston would like to see an end to one-size-fits-all approaches to pain care and for providers to treat patients as individuals. One way to do that is with CYP450 testing, which looks for enzymes that determine how effective a medication will be in a patient.

“I personally think it's time to stop cramming all patients into convenient little boxes and start making CYP450 tests mandatory for anyone who suffers with chronic conditions. It would take the guesswork out of prescribing, prevent patient suffering, and eliminate the stigma, abuse and neglect of chronic pain patients by their providers,” she said. 

Dr. Fudin would like to see Dr. Kolodny stay in his lane as a psychiatrist and addiction treatment doctor. 

“Would it be okay for a board-certified pain specialist professing to be an expert and to opine under those circumstances on best drugs for schizophrenia?” asked Fudin.

Inflammation Cascades Cause Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

The greatest research breakthrough in recent years that will provide much hope for persons with intractable pain syndrome (IPS) has been the discovery of the “inflammatory cascades” inside the central nervous system (CNS). Now that this is known, there are specific measures to take to reduce or halt this process.

Most persons with IPS have two inflammatory cascades, one in the brain and the other in the lower spinal canal. They are called cascades because one area of inflammation can ignite another in a continuous chain reaction and spread.

Excess electric currents enter the brain from a bodily site of damage or diseases. In response to tissue injury, inflammation initially begins around receptors and spreads to other parts of the brain, just like the inflammation that causes cellulitis on the skin.

Inflammation in the lower spinal canal usually starts in a protruding intervertebral disc or due to a puncture, infection or injury to the dura-arachnoid covering of the spinal canal.

Once inflammation starts in either the brain or inside the spinal canal, it may not ever cease or burn-out. It may even silently continue to spread and damage CNS tissue with progressive pain and disability.

How to Control Inflammation

While pain relief is always the first thing on the mind of an afflicted person, measures to control and suppress the inflammatory cascade are essential. Normal anti-inflammatory agents don’t usually enter the brain or spinal canal in adequate amounts to be very helpful. You must use multiple agents that cross the blood brain barrier.

Every person with IPS must be on a daily program that include three measures to control the cascades of CNS inflammation or your condition will likely deteriorate. This can be done through diet, vitamins and supplements that help prevent inflammation; medications that reduce inflammation; and movements that help keep spinal fluid flowing.

Review the three measures listed here with your family and medical practitioners. Select the nutrients, medications and exercises to develop a program that best fits you.

You must continue daily cascade control for as long as you have pain. Opioids and other analgesics, by themselves, do not control the inflammatory cascades. Without a cascade control program, you can expect that your pain relievers will diminish in effectiveness and may totally stop working.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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