Building a Life With Adhesive Arachnoiditis

(Editor’s note: Dawn Gonzalez developed adhesive arachnoidits (AA) in 2008 after her spinal cord membrane was accidentally punctured by an epidural needle during childbirth. The severe pain Dawn felt that day grew worse as chronic inflammation spread in her spinal nerves, and soon she was disabled and bedridden. Her future looked bleak, because there is no cure for AA.

Thanks to the work of Dr. Antonio Aldrete and Dr. Forest Tennant, both now deceased, new treatments were developed to ease the symptoms of AA and make life somewhat livable again for AA sufferers like Dawn. This is her story today.) 

By Dawn Gonzalez

Around 18 years ago, my world suddenly became four walls and intractable pain.

Day after day was spent staring at the walls of my bedroom, wondering if this was really going to be the rest of my life. Would I ever make it out again? Just getting out of bed and making it to the bathroom felt like climbing Mt. Everest. One step took everything, and then somehow there had to be enough left for another.

There were also two little girls who still needed their mom. Getting up to be with them, finding them something to eat, taking care of even the most basic things took every ounce of strength available to me. Things that had once been so ordinary had suddenly become enormous.

Life was happening outside that bedroom, and there were times when it honestly felt like those four walls might be all I would ever see again.

That is where the battle began. It would take everything I had to make it to the living room with my girls for a few hours a day. Then came the front porch.

Just a few steps. Nothing remarkable to anyone else. But after being trapped inside for so long, sitting outside and feeling the air again felt huge. My world had gotten a little bigger. I remember the day I finally made it to the back yard with my girls in 2013. Just feeling the sun on my back and breeze against my skin again for the first time in a very long time.

That was only the beginning.

What followed were years of doctors, appointments, different treatments, setbacks, small improvements, and a constant fight to get some kind of life back. There was never a miracle moment when everything suddenly got better. Recovery happened painfully slowly, sometimes so slowly it was hard to see it happening at all.

Treatment after treatment, supplement after supplement, diet tweaks, and trying everything I thought might possibly help.

A little more strength. A few more steps. A little more independence. Another piece of life back.

There were many setbacks when I had to start again. Every hospital stay, every flare, every illness. Losing access to treatments that helped so much. I would be back to square one.

Nearly 18 years later, life looks very different. Most days aren’t spent in bed anymore. They’re spent with my beautiful kids, with my plants and animals, working on projects, and usually thinking about ten more things I’d like to be doing.

Every morning I wake up and have to face it again. Before the plans, the projects, the plants, or anything else, there is the reality of this body and what it will take just to get through another day.

Some days I win more of that fight than others. Some days pain wins and the plans have to wait. But every morning still means getting up and trying again. Every morning when I make it outside to have my morning coffee on the porch is a victory for the day. Every day when I leave behind those four walls is a huge accomplishment.

It’s easy to look at my life today and only see the limitations. The things I still can’t do, the help I still need, and all the ways life has to be worked around what my body will allow. So often I’m told “you can’t do that” instead of asking about and focusing on what I can do.

What’s harder to see is the distance between here and where this started.

The struggle didn’t end when I made it out of that bedroom, either. So much of life still has to be figured out differently. I’m still working to make my home actually work for the body I have now. 

I’m trying to get a vehicle (preferably with hand controls) to allow me more independence and more opportunity to do the things I really want and need to do. Things need to be accessible and where they’re actually used. Every unnecessary trip across the house costs energy, and there’s only so much of that to go around.

My goal every day is pretty simple: to be as self-sufficient as possible. To take care of myself, to need as little help as I can, and to have enough of myself left for the people and things I love.

That probably doesn’t look like much from the outside.

Making my own food. Taking care of my plants. Getting something I need without asking someone else to get it. Doing a little around the house. Spending the day out of bed. Being able to go to the grocery store or go on a small shopping trip or outing with my kids without a babysitter is my dream. To have the things I need accessible and usable to me without expending all of my energy just hunting everything down.

They’re ordinary things.

But there was a time when ordinary felt impossible.

There was no miracle that got me here. It took years of doctors, treatments, setbacks, adjustments, and thousands of tiny victories stacked on top of one another.

Many moons ago, the goal was making it to the bathroom.

Then it was the front porch.

Today, the goal is to build a life I can participate in as fully and independently as possible. A home that works with my limitations instead of making them harder. Enough independence to take care of myself. Enough energy left over to actually enjoy the life I’ve fought so hard to get back.

This life is still a work in progress. So is my home. So is my body. There is still more independence to fight for and more of my world to make accessible.

I’m not trying to get my old life back anymore. I’m trying to build a life that works for the person I am today.

I know what it took to get from staring at those four walls to standing (or wheeling) outside tending my plants. I know what it took to go from giving everything I had for a single step to having a head full of projects and things I still want to do.

The fight isn’t over. Every morning, it starts again.

But when the starting point was four bedroom walls, it’s hard not to look around now and realize just how much of my world I’ve already taken back.

And I’m still making it bigger.

Dawn and her husband Jose have created a GoFundMe account to help Dawn regain her mobility and independence, and continue her treatment.   

How Should I Carry My Prescription Opioids When I Leave Home?

By Crystal Lindell

Personally, I carry my daily dose of morphine and Norco in a Tylenol bottle whenever I leave the house. Just two or three pills rattling around in there, mixed with some regular OTC pain meds and a couple of TUMS thrown in for good measure.

I have been taking prescription opioids on a daily basis since 2013 and, like all long-term opioid users, I had to figure out how to store and travel with controlled substances.

A lot of guidelines you’ll get from your doctor about this seem to be based on the idea that anyone taking daily Norco must be spending all day, everyday in bed.

But if you have chronic pain, you know the truth: The whole point of daily opioids is that they help you get out of bed.

I take prescription opioids so that I can work, spend time with loved ones, and run errands.

In other words, I specifically take them so that I can leave the house. That means, a lot of the time, when I’m popping a pill with a bottle of water, I’m not at home.  

Unfortunately, this reality doesn’t mesh with some of the absurd rules a lot of pain patient contracts have. I’m supposed to store all my pills in their original bottles at all times. I also have been told that they will not be replaced if stolen.

As such, I can only assume that the people who wrote those contracts envision pain patients being bed-bound with a locked safe on their nightstand that they can only open when a dose is due. 

Because that’s the only scenario where it would make sense to keep all your pills in their original bottle. I highly doubt that my doctor actually wants me walking around Walmart with 53 hydrocodone pills rattling around in the original bottle, just in case I need to take a single pill before I get home.

That’s a massively high-risk situation. 

If anyone robbed me, they would walk away with almost a month’s worth of my prescription. And then, based on my pain contract, none of them would be replaced – even if I filed a police report. So I’d literally just be forced into immediate opioid withdrawal.

And I’m not exactly going to carry around a locked safe in my purse to keep the pills protected. That’s absurd. Anything that would actually keep the pills safe from a potential robber would be way too big to carry around with me as I browse the clearance section for pajamas.

Of course, this all means that if I ever run into legal trouble, a cop might wonder why I have a Norco pill in the Tylenol bottle in my purse. 

Some states allow for "reasonable repackaging" of medication into more convenient containers, like a daily pill planner. But state laws are usually more strict about controlled substances being kept in their original pharmacy container, because that makes it easier for the police to verify the medication is yours.

I fully understand that I could get in legal trouble, but I personally would rather risk that scenario than the possibility of a month’s worth of my prescription being lost or stolen during a trip to Taco Bell.

So yes, I keep some of my prescription opioids in a bottle that they did not originally come in. And yes, I mix them with other pills in that bottle. And while that scenario comes with some legal risk, I think it actually comes with much less personal risk. 

And, I will add, the rest of my prescriptions are always at home in their original bottles, safely stored in a very secure locked safe.

I’m not a perfect pain patient, but I’m not sure there’s any such thing. All we can do is all we can do.

Hot Weather Raises Risk of Chronic Pain for Older Adults

By Feinuo Sun

When a heat wave arrives, the public health advice follows a familiar script: drink water, watch for heat stroke, check on people with heart or lung conditions. That list saves lives. But it leaves out something that shapes daily life for millions of older Americans – chronic pain.

In a new study, public health professor Kai Zhang and I followed over 35,000 adults over age 50 across two decades, matching each person and their reports of chronic pain to the temperature history of their neighborhood.

We wanted to know whether living with extreme heat or cold – not one bad week, but months or years – changes whether pain interferes with people’s lives.

The results suggest that chronic pain deserves a place in how the country prepares people for extreme weather. They also show that rural residents may be the least protected.

What High-Impact Pain Means

Researchers use the term high-impact chronic pain for pain lasting at least three months that limits what a person can do: work, socializing and self-care. It is not occasional aching. It is pain that affects your decisions.

For adults over 50, that matters enormously. Pain that makes it hard to stand, carry groceries or sleep through the night is a leading reason people lose the ability to live on their own.

Temperature affects the body in different ways that can lead to pain:

Cold appears to increase pain sensitivity and stiffen joints, which is why people with arthritis often brace for winter.

Heat affects the body through dehydration, broken sleep and the way it quietly shrinks the range of things a person is willing to do in a day. On hot days, for example, people may walk less, and less movement can lead to stiffer joints and weaker muscles, which makes the pain worse.

What makes heat waves dangerous is often not the afternoon temperature peak but the hot nights that don’t cool off, leaving the body with no opportunity to recover.

What We Found

We tracked when each neighborhood hit temperatures that were extreme for that place. 

A day topping 84 degrees Fahrenheit (28.9 Celsius) in Maine, for example, would be among the hottest 5% of days there over the past decade. In Houston, meanwhile, it would have to reach 96 F (35.4 C) to be in the top 5% for heat, considered extreme.

We compared every community against its own 10-year record rather than a single national cutoff to see how months or years of exposure to extreme cold or heat temperatures in those communities affected their residents.

Two things stood out:

Among the one-fifth of our sample who lived with many extreme-cold days, reports of high-impact pain went up. However, those facing occasional cold spells didn’t report the same effect. People seemed to adapt to one hard winter, but adapting became harder over years of extreme cold.

Extreme heat was split by geography and by wealth:

  • For urban residents, sustained heat showed no link to developing new pain. For rural residents, the connection was stronger. One likely reason is that people in rural areas may spend more time working outside or have older homes that are harder to cool and less access to cool places.

  • Among the poorest older adults, sustained heat was also associated with a higher chance of developing high-impact pain. Among the wealthiest, it was not, likely because of better access to air conditioning, healthcare and being able to stay out of the heat.

Those who could get out of the heat were least likely to report feeling new chronic pain.

Three Key Lessons

Nearly every tool U.S. communities use to lower heat risk is designed for a city environment: cooling centers, tree canopy programs, urban heat island maps.

Rural areas have different challenges. Rural homes are often older and harder to keep cool. Energy costs tend to take a larger share of income. On top of that, rural hospitals have been closing across the country, leaving residents driving farther to reach healthcare.

Agriculture has the oldest workforce in the country – the average producer with decision-making roles on a farm is now about 58 years old, and nearly 40% of the farmland is owned by farmers who are 65 or older. Retirement does not move people out of the heat in rural areas, either.

The findings hold three key lessons for helping older adults:

  1. Chronic pain belongs on lists of heat-related health risks, in our view. State and county heat plans flag cardiac and respiratory patients, but not the people whose independence depends on managing pain. With warning, people can plan ahead and get help, knowing chronic pain may worsen.

  2. Cooling assistance programs need to be tailored to rural needs – the weatherization, energy assistance and delivery through trusted local channels that those homes need – rather than offering scaled-down versions of urban programs.

  3. In the clinic, a patient’s housing and local climate details belong in their documented pain history, next to diagnosis and medication, to help better direct treatment.

Rising global temperatures are increasing the risk that people will be exposed to extreme heat for weeks at a time. In one high-risk summer, 2024, Phoenix saw 39 days with temperatures that didn’t drop below 90 F (32.2 C), even at night.

So, if you have a parent or grandparent facing a heat wave, particularly in a rural area, consider asking not just whether they’re drinking enough water to stay healthy but also whether their back or knees have been worse than usual. The pain may be connected.

Feinuo Sun, PhD, is an Assistant Professor of Demographics, Sociology and Population Health at the University of Texas at Arlington.

This article originally appeared in The Conversation and is republished with permission.  

How Pain Became Profitable

By Neen Monty

Why have prescription opioids become virtually verboten?

Is it safety? Partly. Evidence? Allegedly. The evidence is pretty thin.

But let’s not overlook the less noble explanation: research dollars, commercial opportunity, institution building and careers.

There is now an enormous scientific and commercial industry devoted to solving “the opioid crisis.” And that industry depends, at least partly, on maintaining a particular story: Opioids are dangerously addictive, fundamentally unsuitable for chronic pain, and urgently need to be replaced.

The United States National Institutes of Health launched its HEAL Initiative in 2018, nearly doubling annual funding for opioid and pain research from approximately $600 million to $1.1 billion. 

By 2023, HEAL had invested $3.2 billion across more than 1,800 research projects. That is an awful lot of laboratories, salaries, grants, publications and careers attached to an “urgent public-health emergency.” 

This does not mean researchers are gathering in dark rooms, twirling their moustaches and plotting against pain patients.

They don’t need to. The incentives do the work perfectly well.

Declare an existing treatment unacceptable and you create an urgent scientific problem.

Urgent scientific problems attract grants, investment, patents, clinical trials, prestige and promotions. They also create a potentially enormous market for whichever company produces the replacement.

That is not a conspiracy theory. It is an incentive structure. It's capitalism.

The Awkward Truth Behind the Sales Pitch

A recent Science article asks: “Can a new, safer class of pain drugs ever rival opioids?”

It sounds like another story about escaping the horrors of opioid medicine. But the headline accidentally admits something important: Opioids are extremely difficult to rival. That is why scientists are still trying.

If opioids were useless painkillers, as some modern pain rhetoric would have us believe, there would be no need for new drugs to “rival” them. Researchers would merely need to produce something better than useless. Apparently, this has proved surprisingly difficult. 

In 2025, the U.S. Food and Drug Administration approved suzetrigine, marketed as Journavx, as the first drug in a new non-opioid class for moderate-to-severe acute pain. It blocks NaV1.8 sodium channels in peripheral nerves, interrupting pain signals before they reach the brain. 

Its manufacturer, Vertex, is investing heavily in its commercial launch and development across further pain indications. 

Good.

We desperately need more effective pain medications. We need different medicines for different pain mechanisms, different bodies and different medical circumstances. We need options for people who cannot tolerate opioids and better treatments for people whose pain does not respond to them.

Research and development is good. Obviously.

But developing new analgesics does not require pretending that existing ones do not work. Nor does it require sacrificing the patients who already use them successfully.

How Dangerous Is an Opioid Prescription, Really?

We are constantly told that prescribing an opioid exposes every patient to an intolerable risk of addiction and overdose.

The actual numbers are much less theatrical.

A 2023 systematic review and meta-analysis examined 28 observational studies involving almost 24 million patients prescribed opioids for chronic pain. It found a pooled prevalence of:

  • 1.3 fatal overdoses per 1,000 patients

  • 3.2 nonfatal overdoses per 1,000 patients

That is approximately 4.5 fatal or nonfatal overdose events per 1,000 patients prescribed opioids for chronic pain. Not zero. Not irrelevant. But a very long way from the impression that catastrophe inevitably follows the first prescription. 

More importantly, the risk was not distributed evenly.

Overdoses were strongly associated with identifiable risk factors, including a previous overdose, current substance-use disorder, multiple prescribers, multiple dispensing pharmacies, higher doses, certain mental-health diagnoses and particular medication combinations.

In other words, “a person prescribed an opioid” is not one uniform risk category.

That should be obvious. Apparently, it needed a meta-analysis involving 24 million people to elucidate.

A stable patient taking one medication, prescribed by one doctor and dispensed by one pharmacy is not medically interchangeable with a person obtaining drugs from multiple sources, combining them with sedatives or living with an active substance-use disorder.

Yet much public discussion places all of these people into one ominous bucket labelled “opioid users.”

Not very scientific. Can you say bias? Stigma? Stereotyping? Profiling?

For a well-selected and well-monitored patient on long term opioid therapy, the risk of overdose is very, very low. That’s what the evidence says.

Many pain management doctors are keen to advertise “evidence-based treatment for chronic pain” without ever reading the evidence.

A Swamp of Addiction Statistics 

The estimates of addiction following opioid treatment vary wildly.

That is not because addiction is a mysterious force capable of changing its prevalence depending on the phase of the moon. It is because researchers frequently measure different things and give them similar names. What constitutes “addiction” varies wildly. 

And overdose statistics often include non-fatal overdoses. Or even overdose deaths where an opioid was detected, but was not the main cause of death.

Some studies only measure diagnosed opioid-use disorder. Others measure abuse, misuse, physical dependence, administrative billing codes, unexpected urine results, requesting an early prescription, or a vaguely defined “aberrant behaviour.”

None of these are the same thing. They are thrown together to inflate the outcomes. To keep the panic alive.

One 2018 meta-analysis reported an incidence of opioid “dependence or abuse” in 4.7% among patients prescribed opioids for pain. But the included studies used different diagnostic systems and produced a “substantial heterogeneity” of 99.78%.

For non-statisticians, that is roughly the scientific equivalent of throwing apples, wombats and garden furniture into a blender and reporting the average fruit content. 

Physical dependence is an expected physiological adaptation to many medicines, including opioids. I don’t believe it’s avoidable. It means abrupt cessation may cause withdrawal. This is a normal response to suddenly stopping a medication. By choice or otherwise. It is not addiction.

Addiction - or opioid-use disorder - requires a pattern of use that involves impaired control, compulsive use or continued use despite evidence of harm.

A patient who takes a medicine consistently because it relieves severe pain and improves their ability to function is not demonstrating compulsive use despite harm. They are using a medicine for its intended purpose.

Needing insulin does not prove an unhealthy fixation on insulin.

Needing anti-hypertensive medication does not reveal a worrying psychological attachment to blood-pressure control.

Needing anti-depressants to live a functional life does not show a pattern of compulsive behaviour.

But needing ongoing pain relief? Suspicious. Apparently.

What Happened When Opioid Prescribing Fell?

If opioid prescribing were the principal driving force of the U.S. opioid epidemic, we should have seen precipitous reductions in prescribing to be followed by a substantial drop in opioid deaths.

But that is not what happened.

U.S. opioid prescribing has been declining since 2012. The percentage of adults filling an opioid prescription fell by 31% between 2008 and 2018, while the national dispensing rate continued falling to 35.4 prescriptions per 100 people by 2024.

Meanwhile, illegally manufactured fentanyl spread through the illicit drug supply.

The CDC reports that approximately 70% of U.S. overdose deaths in 2023 involved illegally manufactured fentanyl. It states that illicit fentanyl entered the illegal drug supply around 2013 and subsequently replaced heroin as the dominant illegal opioid in the United States.

Even the FDA acknowledges that prescription opioids are no longer driving the opioid overdose epidemic. 

That sentence deserves to be printed in very large letters.

The truth that remains unsaid – and will never be admitted – is that prescription opioids were never the driving force behind the opioid crisis. Never. It was always about illicit drug use.

But prescription opioids are a much easier target than Mexican cartels and curbing illicit supply. Easy target, big wins, media headlines.

Who cares about the tens of thousands of patients who suffered and even died because their life saving pain medications were taken away? Very few.

Prescribed pain medication and illicit fentanyl are not completely separate worlds. There is some crossover. But most prescription opioid abuse is due to diversion. Yes, some people with opioid-use disorder were initially exposed to opioids through a medical prescription. But the vast majority of those already had a history of substance abuse.

And that crossover is very, very small. As can be seen from the major, large scale, systemic review already cited.

Stable therapeutic use, physical dependence, medication misuse, opioid-use disorder and exposure to an unpredictable illicit fentanyl supply are very different situations. Treating them as one big problem has not only failed to solve the illicit drug crisis; it has inflicted another crisis on people living with severe pain.

The Patients Who Spoil the Story

There is one group largely missing from the replacement narrative: patients for whom opioids work.

They are not getting “high.” They are not escalating their dose uncontrollably. They are not visiting six doctors or four pharmacies. They are not searching for euphoria.

They are searching for enough pain relief to shower, sleep, work, prepare food, and care for their children. To keep living a full and functional life despite moderate to severe pain due to disease or injury.

Some patients find opioids effective, but not remotely pleasurable. Many experience nausea, itching, sedation or mental fog. Others experience pain relief with few side effects. 

Individual responses vary, as they do with every other class of medicine. For every person, it’s a case of weighing up the risks and benefits.

Opioids have unpleasant side effects, but there are few things as unpleasant as living with constant, severe, pain. I’d prefer some itching and a bit of nausea than a knife twisting in every joint, and my arms and legs feeling like they are on fire. 

What would you choose?

In people with chronic low-back pain, research has shown that those with previous prescription opioid use got greater pain relief from morphine. But they were not more likely to feel “high.” In other words, stronger pain relief did not mean stronger euphoria.

But acknowledging those patients creates a problem.

If opioids are effective and acceptably safe for a properly selected and monitored group, then the scientific mission should not be to “replace opioids.”

It is “develop more choices while identifying who benefits from each one.”

Still very worthy. Still very important. Still very deserving of funding.

But we’re no longer talking about a “crisis.” Not quite as dramatic, and not as likely to receive that sweet, sweet funding for non-opioid alternatives.

Develop Better Drugs. But Stop Destroying Patients

To be clear, I am in no way saying that opioids are harmless. Opioids can have serious side effects. Patients need to be well screened and well monitored.

Opioids can cause adverse effects, physical dependence, respiratory depression, overdose and opioid-use disorder. Higher doses and dangerous medication combinations require particular care. Patients should receive honest information, individual risk assessment and proper monitoring.

Doctors are highly skilled and the very low overdose rate in chronic pain patients shows that doctors managed this risk very well. Right up until 2016 in the U.S and about 2020 in Australia.

But saying something “has risks” is not synonymous with “must never be used.”

I take many high-risk medications to treat my complex autoimmune diseases – medications that are much higher risk than any opioid could ever be. Yet taking that risk is allowed. Encouraged. Even insisted upon. 

Why are opioids singled out and denied when Xeljanz or Rituximab are much more dangerous?

It makes no sense. Scientific sense, medical sense or common sense.

Of course better pain medications should be funded. Safer analgesics is a lofty goal that should be celebrated. New treatments that are as good as, or even better than opioids, without opioid-related risks would be a genuine medical achievement.

But we should not be taking opioids away from those who need them, who have been stable and doing well for years, before those new non-opioid pain medications are available. That means leaving people to suffer needlessly, on the promise that something better is being researched.

Pain patients should not be treated like expendable research targets. They should not be forced to surrender their pain relief and functional lives to fortify the commercial and scientific case for tomorrow’s medication.

Develop the alternatives. Fund the research. Build the careers. Make the money, even. All good.

But stop denying people who need access to long term opioid therapy for any kind of quality-of-life. Put the risk/benefit equation where it belongs, where it is with all other medications – in the hands of the informed patient.

And stop pretending that scientific progress requires opioids to fail, along with the patients who benefit from them.

Neen Monty is a patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. For more information on chronic pain, the science, the politics and the lived experience, go to Pain Patient Advocacy Australia

You can also subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Why I Keep Quiet About My Use of Prescription Opioids

By Crystal Lindell

When I first started taking prescription opioids on a daily basis in 2013, I didn’t hide that information from anyone. I told my friends at church, my family, and even my then-boss.

I was in way too much pain to spend any energy worrying about what anyone thought about me or the pills I was popping.

At the time, I was still working in the corporate world. And I quickly began to see and experience the stigma that comes with opioids. It wasn’t long before every mistake I made and every emotion I had were blamed on the fact that I was taking Norco.

I still remember the time a man at work lost his temper on me. When I felt like I had the very appropriate reaction of sobbing at my desk, my then-boss immediately dismissed it to both me and the man who had screamed at me by explaining that I was “on lots of new medications.”

So, over the years, I have learned to withhold my pain medication use to new people. Sadly, this decision has only been reinforced by the fact that things have gotten worse over the last decade when it comes to opioids being a taboo. 

The media narrative that a 5 mg hydrocodone tablet is the same thing as a baggie of street fentanyl has caught on. Now, people who may not have even known what hydrocodone was in 2013 are hyper aware that it’s part of the “opioid epidemic.”

So, I hide my pain pill usage in real life. It may sound paranoid, but I have been undercover enough times to see the truth. 

When people think I’m healthy, they open up about how they really feel about opioid users. There are lots of comments dismissing us as lazy, saying things like, “Maybe he should stop getting high all the time” anytime they make even a small mistake.

I’m then put in the awkward position of having to decide whether to let it slide or defend them.

There’s a very strong part of me that wants to be the “good” opioid user. I want to show others what it looks like when people take opioids “responsibly.” I want to defend other people who take pain pills.

The problem is, once I admit that I use them too, I’m immediately moved out of the “good” opioid user category, because in their minds there’s no such thing. Going forward, everything I do would be seen through the lens of them thinking I’m high all the time.

It’s an impossible situation.

For now, I have found that the best way to navigate it in real life is to hide my health issues and my pain medication usage as long as possible. 

Yes, I write about all of it very openly online, and anyone looking for “dirt” on me would have no problem finding the truth. But most people lack such levels of information-seeking determination.

So, as long as I show up, seem alert, and come across as put together, there’s no reason anyone has to know that the pills I keep in the Tylenol bottle in my purse are actually prescription Norco.

The Feds Are Pushing for Unprecedented Access to Your Medical Records 

By Jennifer Oliva

You might assume that what you tell a doctor stays between you, your physician and perhaps your insurer. But the reality is more complicated.

The Health Insurance Portability and Accountability Act, the federal privacy law that governs health information and is commonly known as HIPAA, is narrower than its reputation suggests. 

It regulates hospitals, physicians, insurers and their business associates, but not the health data you generate everywhere else: not the period-tracking application on your phone, the internet search you ran about a diagnosis, the DNA you mailed to a genealogy company or the wearable that counts your heartbeats.

Even the records HIPAA does cover can be shared, sold or handed to the government in ways that might surprise you.

This gap in protection matters more than ever because the U.S. government is pushing hard to gather health data domestically and abroad. This is happening even as a growing body of research shows that the safeguard which these efforts to collect data lean on – anonymizing data by removing identifying information to make it difficult to trace back to an individual – is far weaker than officials claim.

As a professor of law at Indiana University, I study health information privacy and medical data regulation, which includes tracing how sensitive health information moves among clinics, government agencies and law enforcement. As a co-investigator on a federally funded study about opioid prescribing, I rely on health data in my own research. I appreciate its value for science, and I also see the danger of collecting it without meaningful safeguards.

Limits of Medical Privacy

HIPAA gives you several rights: You can see your health records, demand corrections and expect that a covered provider will not casually disclose your information.

But the law also permits release of some information without your consent. A hospital fully bound by HIPAA may release certain types of records without your authorization and without telling you. 

There are roughly a dozen such categories. Information about treatment, payment and routine healthcare logistics require no sign-off. Neither does information released for public health reporting, law enforcement, judicial and administrative proceedings, health plan oversight, research or the broad catchall of essential government functions.

The statute is also thick with additional exceptions. In practice, much of your health information can be shared through these many open doors. And once data is sent outside the system covered by HIPAA, the HIPAA limits fall away.

For instance, prescription drug monitoring programs, which every state now operates, assemble detailed logs of who filled which controlled substance prescription and when. Federal law enforcement can often access these logs with a self-issued administrative subpoena – an order that doesn’t require a judge’s approval or oversight.

These programs have expanded beyond opioids into a dragnet that shares health data across state lines, exposing patients who seek reproductive or gender-affirming healthcare to surveillance far from home.

Health records can flow to many destinations under different rules. A given disclosure might feel more like a violation depending on who decides where it can go and who can then see it.

RFK Jr.’s Push to Access Health Records

Since the spring of 2025, Health and Human Services Secretary Robert F. Kennedy, Jr. has sought federal access to Americans’ medical records to investigate whether vaccines cause autism. The scientific community has studied this question for decades and has shown decisively that they do not.

According to KFF Health News, HHS has been courting state health information exchanges – the little-known systems that let hospitals and clinics swap detailed, identifiable patient records – and asking how those records might be used for vaccine research. 

One proposal floated by state organizations would give HHS data on 90% of Americans’ medical records by 2028. In Nebraska, millions of federal grant dollars have flowed to a statewide health information exchange nonprofit that has cooperated with the effort.

Large health datasets can be useful. Pooled records can expose drug side effects, track outbreaks and reveal disparities in care that smaller studies miss. Public health has always depended on some surrender of individual privacy for collective benefit.

The concern is not that the government should never collect health data. It is that meaningful safeguards have not kept pace with the scale of collection and capabilities of modern data analytics.

In seeking access to Americans’ medical records for a vaccine and autism study, HHS has declined to say how many states are involved, what data it collects, who can see it or how it will be protected.

University of Maryland school of medicine professor Dr. Omer Awan fact-checks Health and Human Services Secretary Robert F. Kennedy Jr.’s claims about COVID-19, vaccines and autism.

Building a comprehensive repository to chase a question that science has already answered inverts the logic of research. Usually a hypothesis justifies the data collected, rather than the reverse.

Collecting identifiable records for tens of millions of people in a single database also creates a target for breaches, secondary uses that no one consented to and abuses by current or future administrations with different priorities.

‘Anonymized’ Health Data Doesn’t Protect Your Privacy

Officials have offered reassurances that data will be aggregated and stripped of identifiers so no individual can be singled out.

Decades of computer science research undercuts that promise. A study published in Nature in June 2026 sharpened the point, showing that in this age of artificial intelligence, stripping identifiers from patient records to protect identity does not protect all patients equally.

The researchers audited AI diagnostic models trained on clinical data, including chest X-rays, electrocardiograms and electronic health records. They asked whether an outsider could tell if a particular person’s data had been used to build the model. 

For instance, confirming that someone’s record helped train a cancer-prediction tool can reveal that that person has cancer. This exploit is known as a membership inference attack.

The research team found that while the average risk of being identified from data stripped of identifying information often looked reassuringly low, some patients faced near-certain reidentification 

The burden fell unevenly: Underrepresented groups, sorted by race, insurance status or diagnosis, were most at risk. Those most exposed were frequently already most vulnerable to discrimination.

Researchers have long established that removing identifiers from rich datasets does not reliably protect the people in them, and that identification gets easier the more information you have. Today’s AI technology makes it possible to carry out these attacks remotely and quickly.

The U.S. government’s appetite for health data does not stop at the border. As ProPublica reported in June 2026, the State Department has been conditioning lifesaving aid to African nations on access to their citizens’ health data.

Under the Trump administration’s global health plan, Uganda agreed to give the United States real-time access to nine of its health data systems for seven years, including the central repository of the nation’s health information and the system managing individual electronic medical records, in exchange for up to US$1.7 billion over five years, a sum that shrinks each year and falls below prior U.S. support. 

Kenya struck a similar deal; Zambia, Zimbabwe and Ghana walked away from the initial terms.

The U.S. government has promised that the data will be aggregated and anonymized, but privacy experts warn that the agreements are vague and omit standard limits on how much data is taken and how it can be used. A Ugandan digital rights lawyer called the choice his country faced the essence of digital colonialism: Accept the deal and risk exploitation, or refuse it and watch people die.

Domestic records collection and foreign data-for-aid deals rest on the same faith that anonymization neutralizes the risk of pooling sensitive health data.

The evidence says otherwise. This does not mean health data should never be gathered or studied, but I believe that the reassurances deserve skepticism, the safeguards deserve scrutiny, and the people whose bodies generated the data deserve a say. To safeguard privacy, a government seeking sensitive medical records should have to show why it needs them and how the safeguards it relies on hold up.

Privacy law was built for a world where data resided in filing cabinets. Governments from Kalamazoo to Kampala now operate in a world where even an anonymized digital record can point back to you.

Jennifer Oliva, JD, is a Professor of Law at Indiana University.

Oliva’s research and teaching interests include health law and policy, privacy law, evidence, torts, and complex litigation. She also serves on the Science & Policy Advisory Council of the National Pain Advocacy Center (NPAC).

This article originally appeared in The Conversation and is republished with permission.  

DEA Scheduling of 7-OH Could Come Any Day

By Pat Anson

A recent DEA decision to classify the designer drug O-DSMT (O-desmethyltramadol) as an illegal Schedule One controlled substance gives us some insight into how quickly the agency may do the same for concentrated forms of the kratom alkaloid 7-OH (7-hydroxymitragynine). 

It also serves as a reminder of how misleading and inept the DEA and other federal agencies can be about their research and public statements about drugs and other substances.

O-DSMT is a natural metabolite made by the liver when you take the prescription opioid tramadol. Like 7-OH, O-DSMT can have opioid-like effects, and it is significantly more potent than tramadol itself. In recent years, illicit drug labs have been making synthetic versions of O-DSMT, which has led to abuse and overdoses.         

The DEA published its first notice about scheduling O-DSMT on June 24. After a mandatory 30-day waiting period, the agency took another 19 days before officially classifying O-DSMT as a Schedule One substance on August 12.

The entire scheduling process took only 49 days for O-DSMT, which is quick work for the DEA.

Applying that same time frame to 7-OH, which the DEA first moved to schedule on July 6, means the DEA might officially classify concentrated 7-OH as an illegal drug on or about August 24. 

The kratom alkaloid mitragynine pseudoindoxyl and synthetic alkaloids MGM-15 and MGM-16 could also be classified as Schedule One substances that day, putting them in the same category as LSD and heroin.

All of this is projection, since the DEA could schedule 7-OH at any time. In the past, the agency has waited several months or even years before scheduling a drug, but because this is an emergency scheduling based on an “imminent hazard to public health,” the DEA is unlikely to wait long. 

The Trump administration appears eager to take concentrated 7-OH products off the market. President Trump has shown an interest in scheduling 7-OH, and Health and Human Services Secretary Robert. F Kennedy Jr. has called 7-OH manufacturers a “sinister industry” for their marketing efforts to children.

The FDA initially called for 7-OH to be banned over a year ago, but the DEA declined to take action until now.

‘FDA Fairytales’

Which brings us back to O-DSMT, which has an obscure but telling connection to kratom, the DEA and FDA.

In 2016, when the DEA first tried to schedule kratom’s alkaloids as Schedule One controlled substances, it claimed there were numerous deaths associated with kratom, including a “cluster of nine deaths in Sweden from use of the kratom product Krypton.”   

“Krypton” is not a reference to the mythical home planet of Superman, but to an herbal powder that was being sold online as a legal high. Nine young people died in Sweden from respiratory depression after ingesting Krypton in 2010. 

Krypton was then being marketed as a safe and natural kratom product, so the deaths were initially blamed on kratom. But toxicologists soon discovered that Krypton was laced with O-DSMT, which was detected in blood samples from the nine overdose victims. Based on that evidence, Swedish regulators quickly moved to ban O-DSMT as an illegal narcotic in 2011 — fifteen years before the DEA did.     

“We believe that the addition of the potent mu-receptor agonist O-desmethyltramadol to powdered leaves from Kratom contributed to the unintentional death of the nine cases presented and conclude that intake of Krypton is not as harmless as it often is described on internet websites,” Swedish researchers reported.  

Why was the DEA still blaming kratom for the Swedish deaths in 2016? Because that’s what it was told by the FDA, which continued to call the Krypton overdoses “kratom-associated deaths” long after the overdoses were linked to O-DSMT.

“The FDA misrepresented the nine Swedish deaths in its 3-Factor Analysis recommendation to the DEA in 2016 with the express purpose of triggering the emergency scheduling authority of DEA under the Controlled Substances Act (CSA) to schedule kratom as a Schedule I substance,” said Jane Banin, PhD, in a 2018 report sponsored by the the American Kratom Association.    

The DEA wasn’t the only federal agency that was misled by the FDA. The CDC and National Institute on Drug Abuse (NIDA), as well as state and local health officials, also published warnings about kratom, based in part on what Babin called the “FDA’s fairytales.” 

“The FDA’s failure to provide accurate and critically relevant data biased the narrative on the alleged deaths associated with kratom, amounting to a viral event that infected wide ranging opinions, and produced deeply flawed public policy at federal, state, and local levels,” Babin wrote.

The FDA’s sloppy research on kratom was later called "embarrassingly poor evidence” by a top federal health official, when he informed the DEA in 2018 that the agency would no longer seek to have kratom scheduled as an illegal substance. 

Flash forward eight years and the Trump administration is on the verge of banning concentrated forms of 7-OH, but not natural leaf kratom. 

That distinction may be comforting to kratom advocates, but it sparks genuine fear in millions of 7-OH consumers, who have come to rely on 7-OH as a potent and effective pain reliever. 

They can take cold comfort in the fact that the DEA is no longer spreading fairytales about what happened in Sweden. The DEA’s scheduling order for O-DSMT now correctly blames the nine overdoses in 2010 on “intoxication with O-DSMT.” 

Deceptive and Misleading Evidence

That’s not likely to dispel fears the DEA is repeating the same mistakes again with 7-OH. A justified fear, as it turns out.

In its scheduling order for 7-OH, the DEA states that “fatal overdoses involving 7-hydroxymitragynine have been reported,” but briefly cites only one case: a 24-year old man who died in 2014 with a high concentration of 7-OH in his blood. 

The DEA omitted some crucial information about the case and got one detail clearly wrong. For one, according to the researchers who investigated the overdose, the man was not 24-years old, he was middle-aged.

Unmentioned by the DEA is that the man had “a history of drug abuse and mental illness for several years.” In addition to 7-OH, he had a sedative, antidepressant, and anti-seizure medication in his blood – clearly a case of polysubstance use.

Another key detail left out by the DEA is that the overdose happened in Norway – meaning the DEA was again invoking a drug death in Scandinavia and then getting basic facts about it wrong      

But the strangest aspect is when the death occurred. High dose 7-OH products only came on the U.S. market in 2022, so citing a fatal overdose in Norway from 2014 doesn’t make much sense. I’ll go even further and say it’s deceptive.   

In its campaign against 7-OH, the DEA mainly relies on anecdotal information from third-party sources, such as a growing number of calls to poison control centers about 7-OH and user-reported experiences posted online warning of 7-OH addiction and withdrawal.

“The National Drug Early Warning System (NDEWS) conducted web monitoring on reddit mentions of kratom and its derivates. In the report, information provided by reddit discussants surrounding kratom and 7-hydroxymitragynine shows that users often compare 7-hydroxymitragynine effects to prescription opioids, like oxycodone and hydrocodone, with users expressing worry on how such potent products are legally available at smoke shops,” DEA said.

The DEA’s failure to provide credible examples of 7-OH causing a fatal overdose is telling. So is its reliance on the guilt-by-association tactic of equating 7-OH with prescription opioids.

7-OH advocates say the DEA can’t provide evidence about an overdose on 7-OH alone, because the vast majority of reported deaths involve other substances — like the one in Norway. 

“If you talk to medical toxicologists that do postmortems, they don't see it. The experts in the country don't believe that 7-OH is responsible for deaths. If you talk to emergency room physicians, if you talk to addiction scientists, if you talk to leading people at the National Poison Control Center, their data doesn't suggest that this is leading to great harm,” says Jeff Smith, Executive Director of the Holistic Alternative Recovery Trust (HART), an advocacy group funded by 7-OH manufacturers.    

“The data doesn't appear to bear out that there is great harm occurring, or that this is any kind of emergency. If it were, they (DEA) wouldn't have waited a year for the initial recommendation.”

To be clear, concentrated formulations of 7-OH are potent analgesics that can lead to addiction and withdrawal. Even 7-OH advocates say the industry needs more regulation and accurate labeling, and that 7-OH products shouldn’t be marketed and sold to children.

All of this could be moot point though, because 7-OH products appear on the verge of being banned nationwide. Whether the evidence supports it or not. 

Are Women Who Use Walking Canes Faking Disability? A UK Columnist Thinks So

By Crystal Lindell

When I was still working full-time in the corporate world, I often had to go to trade conferences where I’d spend 12-hour days walking a show floor the size of multiple football fields.

I have hypermobile Ehlers-Danlos Syndrome and intercostal neuralgia, so even with very strong pain medication, it was often too much for me.

I knew that using a walking aid, like a cane or even an electric scooter, would have made the whole experience easier, but I never used them. I feared rude comments and judgements from all the professional interactions I had slated during my many meetings.

Instead, I suffered through it, barely able to keep myself upright by the end of my travels.

It didn’t have to be that way. I could have used a walking stick, a cane, or a scooter. It was only the very valid fear of social judgment and stigma that kept those tools from me.

Unfortunately, despite the fact that this happened years ago, the repulsion toward young women using mobility aids is still alive and well.

Recently, Kathleen Stock wrote a disparaging column for The Times (UK) titled, "Why are Young Women Using Walking Sticks?" (You can get a pay-wall free link here).

Stock wrote about the “disproportionate number of Gen Z females” using walking sticks or canes to get around. She dismissed it as some kind of pity play by shallow young women who are trying to draw attention.  

“The message sent to onlookers is about a life spent in pain; though what kind of pain, exactly, remains unclear,” Stock wrote. “Rather than it being cruel to say this, in fact, it is cruel not to. We owe it to potentially able-bodied young people to challenge their tendencies to neuroticism and fear; to get them out into the world as functioning adults, wherever that is possible. For their sake, we need to help them ditch the props, and — quite literally — to stand on their own two feet.” 

Stock’s only proof of this is that she has supposedly seen groups of young women “leaning on a walking stick as they edge gingerly along.”  She claimed there were hundreds of TikTok videos instructing people how to live life with mobility aids.

Even taking her assertion at face value, one could be forgiven for assuming Stock may want to explore the very valid causes that could be leading more women to need mobility aids.

Causes like the mass disabling pandemic we’ve been dealing with since 2020, or the fact that climate change is making chronic illness symptoms worse. Or that our healthcare system doesn’t work very well.

But no, Stock doesn’t bother with any of that. Instead, she accuses the women of catching the dreaded virus of "social contagion."

“When you dig into their explanations, a few officially medical-sounding words tend to recur: postural tachycardia, joint hypermobility, fibromyalgia, chronic fatigue,” she writes. “What these syndromes all share is a set of non-specific symptoms, versions of which are familiar to all of us: dizziness, a racing heart, exhaustion, brain fog, muscle pain. And of course, many of these are also symptoms of anxiety, the defining emotion of teenage years.”

I was personally unaware that anxiety could cause things like joint hypermobility, but umm, ok. Let’s see where she goes with this. 

Stock adds, “Could it be, then, that some are taking a cue from internet influencers, overanalyzing normal experiences and talking themselves into a disabled state?”

Why are we even still having this conversion in 2026? Imagine saying that about people who need reading glasses, hearing aids, or wheelchairs.

Even if her assertion is true – that more young women are using walking canes – who cares? It doesn’t impact anyone else at all when someone uses a cane! 

Stock seems to think that using a walking aid will “make you different, special, excused from the pressures of life, pleasingly fussed over by strangers.”

It’s such a gross statement with zero basis in reality.

One day, if she lives long enough, Stock will also need a mobility aid. Then she will immediately find out how much nonsense she was spouting.

As someone who has used various types of mobility aids like crutches and even electric scooters, I can confirm that zero people “pleasantly fuss” over you in such cases. And while you may stand out as “different,” it’s only in the worst possible way. 

Most people still hate having to see anything that reminds them of the frailty of the human body. Some will angrily make you aware of that fact as soon as they see your walking boot.

For its part, the Ehlers-Danlos Society offered a much more eloquent response than I could summon about Stocks’ drivel. They rightly point out how damaging columns like this are in major media publications.

"Every day we hear from people around the world who are challenged for using accessible parking, questioned about their need for mobility aids, told they are too young to be disabled, or have their symptoms dismissed because they do not fit assumptions about what illness or disability should look like,” the society said in a statement. “These experiences contribute to delayed diagnosis, barriers to healthcare, discrimination, and poorer quality of life.”

The bottom line is, whether you need a walking aid, wheelchair or reading glasses, you should be able to use them in peace, without sneering judgement from people like Kathleen Stock.

The Lifesaving Legacy of Dr. Forest Tennant

By Pat Anson

Humanitarian. Philanthropist. Author. Historian. Friend.

Those are some of the words that come to mind when I think of Dr. Forest Tennant, who died Thursday from complications of kidney failure. He was 85.

Here are a few other words that describe him: Real estate investor. Mayor. Professor. Civic Leader. Veteran.

Forest Tennant was many things to many people, but he is best known for his long career as a doctor, which made him one of the world’s leading experts in pain management and substance abuse treatment. His commitment to thousands of chronic pain sufferers – including many who were turned away by other doctors – made Forest a beloved figure in the pain community.

“I will be forever grateful to Dr. Tennant,” says Anne Fuqua, who lives with adhesive arachnoiditis (AA) and other painful conditions. “I wouldn't be here today without the treatment I received from Dr. Tennant. Beyond prescribing opioids, he was able to find the cause for things that other doctors had not and then treat them successfully. Dr. Tennant will always be a hero in my eyes.”

AA is a progressive inflammatory spinal disease that causes severe intractable pain and profound functional decline. Without effective treatment, patients face a lifetime of disability, with very little quality of life.

But thanks to Tennant’s willingness to prescribe opioids and his innovative therapies using hormones and neurosteroids, many AA patients are now able to live happy, productive lives.

In that sense, Tennant really was a lifesaver. Becoming his patient was a seminal moment for AA patients, who often traveled long distances to his small pain clinic in West Covina, California, which Forest and his wife Miriam essentially operated as a charity.  

Forest, Anne and miriam

“It is difficult to fully express our deep gratitude to Dr. Forest Tennant, whose exceptional care saved my son’s life along with many others,” said Ingrid Hollis, who collaborated with Tennant on many projects. “We are profoundly grateful for the hope and healing provided our son at a time when we had exhausted all other options. 

“Over this past decade, his support and expertise were a constant presence in our lives, and we tried to give back by offering him support and guidance in his research and writing endeavors. We will miss his almost daily phone calls to discuss projects and ideas. What a delight and honor this was all these years. Collaborating with him on numerous writing projects and conferences throughout the years was such a privilege and responsibility we didn’t take lightly.”  

Tennant’s compassion for patients turned him into a target. In 2018, he retired from clinical practice after his clinic and home were raided by DEA agents who were suspicious about his prescribing and the distances patients traveled to see him. Tennant was accused of running a “drug trafficking organization” by a rookie DEA investigator, but was never charged with a crime. On the advice of counsel and his doctors, Tennant thought it best to retire.

“It’s hard to continue operating when they never closed my case, and so I’m going to retire and move on,” Tennant said at the time. ““We very much regret this situation as the clinic is filled with patients we consider beloved family and friends.” 

Tennant stopped practicing medicine, but continued his groundbreaking research into AA and other intractable pain conditions. He wrote several books on diverse topics such as Elvis Presley and John F. Kennedy, and was a PNN columnist. Forest and Miriam also redoubled the efforts of their foundation, renaming it Arachnoiditis Hope.

Although he was in poor health over the last few months, Tennant continued to write, appear in podcasts and counsel pain patients, sometimes from his hospital bed.

One of his proudest achievements came a few weeks ago, when he was able to get the first study of a successful arachnoiditis treatment published in a peer-reviewed medical journal. 

Remarkably, Tennant also wrote another book, “Subduing the Inflammation of Adhesive Arachnoidtis: Secret to Relief and Recovery.” The handbook is designed to educate doctors and patients about the benefits of using hormones to restore damaged nerve tissue.  

Even in his final days, Tennant was sharing his knowledge and compassion for the sickest among us.

“This humble physician from Kansas devoted his career to alleviating the pain and suffering of people all over the world (65 countries).  He lovingly answered several hundred emails a month personally. Treating each person as a special individual worthy of respect and the best care and advice he could offer,” the Arachnoiditis Hope staff said in a statement.

“All of us at Arachnoiditis Hope feel privileged to have known and worked with this great man.  Dr. Forest Tennant set an example not only for all of us, but for medical practitioners everywhere to do their utmost best to help relieve the suffering of those in pain in their community.”

‘He Gave Us All Hope’

There are many wonderful tributes online to Forest and Miriam, posted by the patients they helped save.

“He gave us all hope when we could not find it anywhere. When our own doctors either didn’t care or wouldn’t listen, Dr. Tennant gave us a voice. Without Dr. Tennant, many of us would not be alive today, me included,” wrote Denise Domnick-Molohon. “The day he accepted me as his patient was one of the very best days of my entire life.”

“I was one of his patients for about 10 years and he profoundly changed my life. Because of him, I am able to be a very active person again — a social worker with a relatively normal life these days. His care was a miracle to me at a time when it felt like nobody gave a damn if I lived or died,” said Heather Grace. 

“Dr. Forest Tennant was a mentor, my friend, and someone I loved like a grandfather. What I will remember most is that he listened,” wrote Sarah Lewis, a registered nurse who lives with AA. 

“He never dismissed me or made me feel my voice mattered less. He listened, encouraged me to think bigger… But what Forest left me was more than knowledge. He left me ambition. The ambition to keep asking questions, keep challenging old assumptions, and keep pushing until adhesive arachnoiditis is understood in mainstream medicine.”

Forest Tennant was indeed a good listener. He was also non-judgemental, inquisitive and generous to a fault. If it wasn’t for his encouragement and financial support, Pain News Network probably would have stopped publishing years ago. It was a privilege to be called his friend.

Do you have a story to share about Dr. Tennant? Please leave a comment below.

Is Dry Needling Effective for Muscle Pain?

By The Conversation

Physiotherapists, chiropractors and osteopaths commonly use dry needling to treat neck, shoulder, back and other types of muscle pain.

It involves inserting thin needles into sensitive parts of a person’s muscle, often termed “myofascial trigger points”. The needles remain in the muscle for a few minutes and can be gently moved to create a twitch response in the muscle.

This therapy is thought to relax the muscle, reduce inflammation, promote healing and reduce pain. But does it actually work? And what are the risks?

Similar to Acupuncture

Dry needling is similar to acupuncture: they’re both applied to reduce pain.

Both treatments use solid, single use needles. They’re commonly 30–75mm long and 0.2–0.3mm thick, although longer needles may be used for deeper muscles. Unlike injection needles, they aren’t hollow and don’t inject medication.

A key difference is how the needle locations are chosen. Traditional acupuncture selects points based on symptoms and Chinese medicine concepts, including balancing qi as it flows through pathways called meridians. Dry needling is applied directly to tissue that’s thought to be the cause of symptoms.

Gaining Popularity

People seeing a physiotherapist for aches and pains are increasingly being offered dry needling. A 2023 survey of 203 Australian physiotherapists found 64% use dry needling on their patients.

The surveyed physiotherapists believed dry needling was an effective pain reliever and thought it was particularly effective alongside treatments such as exercise or manual therapy (which encompasses massage and manipulation or “joint cracking”).

In Australia, registered physiotherapists, chiropractors and osteopaths meet the safety standards required to use dry needling if they have completed training. The training usually involves a short (weekend) course.

Does Dry Needling Work?

Several research studies have collated the available evidence on dry needling. Most conclude it provides short-term pain relief for conditions such as neck pain, shoulder pain and low back pain, but is no better than other common treatments such as exercise.

Clinical practice guidelines are what health-care providers should use to dictate which treatments to provide and not provide. However, few clinical practice guidelines recommend dry needling.

There are two main reasons why.

Nearly all studies investigating the benefits of dry needling have serious concerns about how they’re conducted. This includes not being able to determine whether the benefits of dry needling are genuine or simply reflect placebo effects – when your health improves after receiving a fake treatment.

So it remains unclear whether dry needling provides benefits beyond a placebo.

Another reason is the potential risks of dry needling.

What Are the Risks?

Inserting thin and extremely sharp needles into the body requires an excellent understanding of anatomy.

Health-care providers need to be extremely careful to avoid major arteries, veins and nerves when dry needling around the neck and avoid puncturing the lungs when dry needling around the “traps” (trapezius muscles) and torso.

There have been cases of providers puncturing their patients’ lungs during dry needling, prompting a medical emergency.

In June, it was revealed that a Western Australian physiotherapist had her registration suspended for three months after puncturing a patient’s lungs, causing bilateral pneumothoraxes – the collapse of both lungs.

In November, Pittsburgh Steelers NFL player TJ Watts had to undergo emergency surgery after a similar injury caused a partial lung collapse.

Despite the risks, half of the studies on dry needling don’t mention if any adverse events occurred.

The studies that do report risks suggest serious risks such as a collapsed lung, infection or broken needle that gets stuck in a person’s body are very rare.

But we don’t know exactly how rare this is. Data from a large study on acupuncture suggests these adverse events occur in approximately one in 100,000 patients. But it’s unclear if the risk is the same for dry needling.

Less-serious side effects such as minor bleeding, bruising, soreness at the needling site or temporary symptom aggravation seem to be common.

Some factors also increase some risks, such as taking blood thinning medication or having an immune disorder.

Talk to Your Provider

Because the evidence on dry needling is uncertain and risks have not been adequately reported in the research, it’s important to discuss the benefits, risks and practicalities of dry needling with your health-care provider.

If your goal is short-term pain relief, consider asking your provider if there are other options that could provide similar relief.

If you have a fear of needles or have fainted when undergoing a needling procedure previously, such as a blood test, then dry needling might not be the best treatment for you.

Before undergoing dry needling, it’s important you have had a chance to ask questions and been given sufficient information about the treatment before providing informed consent.

Questions you might ask your health-care provider include:

  1. What are my treatment options?

  2. What are the potential benefits and risks of these options?

  3. How likely is it that those benefits and risks could happen to me?

Although other treatments are as effective or more effective with fewer potential side effects, dry needling might be useful for some people. But a discussion of risks and benefits should always be transparent and ongoing.

Luke Jenkins, PhD, is Lecturer in Physiotherapy at Western Sydney University.

Giovanni Ferreira, PhD, is a Research Fellow, Institute of Musculoskeletal Health, at the University of Sydney.

Joshua Zadro, PhD, is an Associate Professor of Physiotherapy at the University of Sydney.

Peter Stubbs, PhD, is an Associate Professor of Physiotherapy at the University of Technology Sydney.

This article originally appeared in The Conversation and is republished with permission.  

The Unusual Link Between Two Rare Chronic Pain Conditions

By Crystal Lindell

People who have Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder, are more likely to have Complex Regional Pain Syndrome (CRPS) – a chronic inflammatory nerve pain condition that is usually triggered by an acute arm or leg injury.

That’s according to a new study by researchers at the Icahn School of Medicine and the Hospital for Special Surgery in New York, who documented the unusual link between the two seemingly unrelated and rare pain conditions.  

Their findings, published in the journal Regional Anesthesia & Pain Medicine, show the risk of having CRPS was 11-times higher for patients with EDS, compared to those without EDS.

That’s based on an analysis of national insurance claims for more than 54 million patients. Among those patients, 26,053 had EDS, while 51,424 had CRPS. 

Using that data, researchers calculated that 1.05% of people with EDS also have CRPS – meaning there’s about a 1 in 100 chance of having both conditions. Those are small odds, but they are substantially higher than the chance of someone without EDS having CRPS – which is only 0.09%.  

“These findings provide the first large-scale population-based evidence consistent with prior case series suggesting a diagnostic co-occurrence between EDS and CRPS,” researchers concluded.

“Patients with EDS had a substantially higher proportion of recorded CRPS diagnoses than patients without EDS in this national claims dataset. These findings support further investigation into the observed association between EDS and CRPS diagnostic coding.”

The study did not look into how the two conditions may be linked, but one possible explanation is that weak connective tissue, joint instability, and the frequent injuries of people with EDS may put extra stress on the nervous system, which can trigger the chronic and severe nerve pain characteristic of CRPS.

There is also some overlap in symptoms of EDS and CRPS, such as slower healing of damaged tissue and dysregulation of the nervous system, which affects blood flow, sweating, and skin temperature.

Another explanation is a greater use of healthcare resources. People with EDS may be more aware of their symptoms and see doctors more often, which may increase the likelihood of diagnosing other health problems, such as CRPS.

How ‘Toxic Narratives’ Fueled the Opioid Crisis

By Pat Anson

Dr. Lynn Webster has a unique perspective on the opioid crisis. As a pain management expert and prolific researcher, Webster was elected by his peers as president of the American Academy of Pain Medicine (AAPM) and developed the first Opioid Risk Tool, a questionnaire designed to assess a pain sufferer’s risk of opioid abuse.

Like many other doctors involved in pain management, Webster was also named as a defendant in dozens of lawsuits, alleging he was a “key opinion leader” in helping drug companies use deceptive tactics to market opioids – allegations that Webster says are inaccurate and misleading.

All of this happened over a decade ago, but many of the myths about the causes of the opioid crisis still persist today – what Webster calls “toxic narratives.” And they are still harming patients and doctors.

“A toxic narrative is a narrative that, when repeated continuously, can lead to harm. And the example here is that our opioid crisis was entirely due to excessive supply or overprescribing opioids,” Webster explains.

“As a result, the policies that were implemented led to patient abandonment, patients not having access to medicine, and in some cases patients committing suicide or going to the street to get more harmful substances. So it is a narrative that is incomplete, sometimes false, but it takes on such a hold that it leads to harmful outcomes.”

Dr. Webster and co-author Sarah Eichberg, PhD, recently released a new book called “Deconstructing Toxic Narratives: Data, Disparities, and a New Path Forward in the Opioid Crisis.”

As the name suggests, Webster and Eichberg analyze how we got to where we are today, with the pain of millions of patients going untreated, doctors reluctant to prescribe opioids, and an overdose crisis largely fueled by illicit fentanyl and stimulants, not pain medication.

Behind it all is the simple fact that many people who struggle with addiction are trying to escape from a changing and challenging world that doesn’t seem to have a place for them.  

These are complex issues that have been poorly explained by the media, regulators, politicians and litigators – who all latched onto the theme that opioid pain medication was the root cause for soaring rates of addiction and overdoses.

“Everyone wanted a simple answer. And if people want a simple answer, then pharmaceutical companies are a good target and physicians are a good target, and they're pretty identifiable,” Webster told PNN. “As I write in my book, it's easier to say something that is kind of interesting, sexy, and fits a narrative that people want to believe, and then it becomes repeated without any challenge or with very little challenge. It's a simple way to address a very complex problem, which has been harmful.”

Asked to explain who was most responsible for spreading this incomplete narrative, Webster identifies two: the Center for Disease Control and Prevention (CDC), which released its disastrous opioid prescribing guideline in 2016, and Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group that played an influential role in the drafting the CDC guideline.

“The CDC is very much responsible for initiating the narratives. I mean, the head of the CDC said this was a physician-driven crisis exclusively, and then the Surgeon General at the same time basically was focusing on physicians and overprescribing without taking a look at the more complex part of the problem,” says Webster.

“There are other organizations, like PROP, that continued that narrative because it fulfilled their belief. I don't think most of the people in PROP intentionally meant to harm people, but it led to harm because of the incomplete story that their position took.”

‘That’s How You Make Money’

Others with financial interests took advantage of the situation, such as medical device makers and drug companies who hurriedly developed and marketed “non-opioid” pain treatments that were often more expensive and don’t work nearly as well.

“I think it really gets back to a deeper issue, which is free market capitalism and the lack of guardrails, basically free market capitalism. I call it neoliberalism, and that started back in the 1980s, primarily where the incentive is to make money,” said Webster. “The money to be made on finding an alternative to opioids was certainly an incentive to create and help sustain the toxic narrative.

“We've learned that false narratives are reinforcing to the people who want to believe them, and that's how you make money. It is not that we've been able to convey more accurate stories or truth. It is a means by which people can elevate themselves, be promoted, and make money.”

Free market capitalism also extended to the news media, which discovered that the opioid crisis was catnip for readers, viewers and listeners.

“Without a doubt, that's what's happened. There are thousands of examples where people see what was written in the Washington Post, New York Times, Time Magazine, Newsweek, anywhere, and because of the stature of those platforms, people just assume everything that they said has been researched and is accurate. But it's not,” says Webster, who adds that it was common for news organizations to conflate illicit opioids with prescription opioids, without explaining the difference.  

“That was repeated in every publication that talked about this. I cannot think of an exception where they separated the two. And in fact, I remember reviewing a couple of medical journal articles for publications, academic publications, where they did the same thing.”

Webster and Eichberg’s book is deeply researched and fact-based. Chapters explore various aspects of the opioid crisis; from addiction trends, patient stigma, and the criminalization of medicine to socioeconomic factors, childhood trauma, and the CDC’s misclassification of illicit fentanyl.

In effect, they’re trying to set the record straight on decades of incomplete and inaccurate information – and hoping clinicians, researchers, journalists and public health experts will learn from a more nuanced view of the opioid crisis.  

“The way in which we have been addressing it is to look at how to reduce access to drugs. That’s not going to solve the problem. The only way that we can dramatically reduce harm is for us to look upstream, to look at those factors that really contribute to the vulnerability of people,” Webster explained.

“We're at a difficult time, you know. The country is divided politically, and that feeds into almost every topic. We want to be emotionally rewarded for our anger about different things, rather than trying to understand the nuance and the truth behind a topic, and that's very, very much true with regard to addiction and pain treatment.”

When a Pain Flare Steals a Special Day

By Crystal Lindell

Sunday was a boringly normal day for me — as someone who deals with chronic pain on a daily basis. 

When I woke up, it felt like someone had replaced my ligaments with concrete and I was being stabbed in the ribs. I limped to the bathroom. And for breakfast, I had four different pain-relieving drugs and a bottle of water.

After that, I laid back down and slept for another three hours.

I got up just long enough to eat lunch, which of course included a side of more pills. I grabbed my pillow and laid down on the couch in the living room, where I slept for another 2 hours.

It was a pretty routine pre-thunderstorm pain flare for me. Thankfully, I was off work, so I was able to spend the day resting.

The only problem was, Sunday was also my fiancé’s birthday.

He loves me. And he also deals with chronic pain. So he was more than happy to hang out with me on the couch all day while we watched bad 90’s movies.

He was also cool with going to pick up the toilet paper we needed and the Chinese food we got for dinner to celebrate his special day.

But I felt like crap about all of it.

I hate that I spent his entire birthday dealing with a pain flare.

He always does the dishes, and I wanted to do them for him on Sunday to give him a break, but I couldn’t. He also feeds all of the cats first thing every morning, and I wanted to do that for him as well. But again, I couldn’t.

He loves going to play basketball at the court behind our house, but I couldn’t do that with him either.

It sucked. All of it.

Eventually, the thunderstorm came, the pain relieving drugs I was taking started working, and I was able to function a little bit – but by then it was 10 pm and my fiancé was ready for bed.

Part of the issue is that I’m also tapering down on 7-OH in anticipation of the upcoming ban. Before the ban was announced, I was able to take as much 7-OH as I needed on bad pain days.

But these days, I have to use it sparingly, if at all.  The goal is to get off of it before the DEA declares it an illegal Schedule One controlled substance. The only thing worse than losing access to 7-OH would be to also have to go off of it cold turkey.

But that means I’m losing days of my life again to pain. Sometimes, it’s just a random Tuesday that I lose, and it’s no big deal. 

But other times, it’s an “August 9th” that I lose – and then I miss out on a special day.

Why Hot Weather Makes Pain Worse

By Gulnaz Anjum and Mudassar Aziz

This summer’s amber heat warnings have brought with them many risks to health.

Many people have experienced these health effects first-hand: brain fog, physical fatigue, restless nights and reduced productivity. If that sounds familiar, you’re not imagining it. Science shows that high temperatures can affect both our bodies and our brains – even before they reach extreme levels.

But one consequence of hot weather that many people may not know about is that it can also affect physical pain.

Our research analysed data from a large, nationally representative survey from the global analytics firm Gallup, which recorded daily measures of pain from more than two million US residents. We found that as temperatures increased so did the likelihood of people reporting they were experiencing some type of generalised physical pain.

The largest increases occurred on very hot days – around 32°C (89.6°F) or above. Middle-aged adults and people from lower socioeconomic backgrounds were most likely to report experiencing pain on very hot days.

Scientists have identified several possible explanations for why you’re more likely to experience worse pain on hot days.

Some of these causes are direct triggers of pain – including dehydration caused by the heat, inflammation and other physiological processes, such as blood pressure changes which can make existing pain worse.

Other causes are indirect triggers. For instance, hot weather can increase stress, disrupt sleep, reduce wellbeing and limit our ability to perform our usual daily activities, such as exercise. All of these factors are known to amplify experiences of pain.

The relationship between pain and these potential triggers can go both ways as well. Sleep is a good example of this.

Poor sleep makes people more sensitive to pain, while pain itself makes it harder to sleep. During heatwaves, many people struggle to get a good night’s sleep, creating a vicious cycle in which poor sleep increases pain and pain further disrupts sleep. Over time, this cycle can take a toll on people’s wellbeing and quality of life.

The effects of pain extend beyond physical discomfort, as well. Pain competes for our brain’s attention. When the body hurts, attention is diverted towards coping with that pain, leaving fewer resources available for concentration, memory and decision-making. This can affect performance at work, learning in school and even everyday decision-making.

In some situations heat can be beneficial for pain – for example, applying a heating pad to help relieve lower back pain after a long day on your feet.

But there’s an important difference between using targeted heat to treat a specific area of the body and being exposed to sustained high temperatures that affect the entire body. The latter places stress on multiple physiological systems and can worsen, rather than relieve, physical pain.

The consequences of heat’s effects on pain are not only personal – they’re also economic.

In our study, we estimate that hotter temperatures already cost the United States’ economy around US$2 billion (£1.5bn) every year through higher levels of pain. If temperatures continue to rise and no action is taken to help people adapt to extreme heat, these costs could exceed US$9 billion annually by 2050.

The increasingly frequent and intense heatwaves experienced in recent UK summers suggest that comparable losses in healthcare costs, reduced productivity and diminished quality of life could become an important challenge if hot summers become the new normal.

Bodily pain should therefore be recognised as another hidden health consequence of extreme heat.

Heat affects us in more ways than we often realise. The good news is that there are practical steps we can take to reduce these effects. Staying well hydrated, avoiding strenuous activity during the hottest hours of the day, seeking cool indoor spaces and planning outdoor activities for the morning or evening can all help reduce heat-related pain and discomfort.

Gulnaz Anjum, PhD, is an Assistant Professor of Climate Psychology at the University of Limerick.

Mudassar Aziz, PhD, is an Associate Professor of Psychology at the University of Oslo.

This article originally appeared in The Conversation and is republished with permission.

South Korea Stops Sales of Trader Joe’s Seasoning Due to Opioid Contamination 

By Pat Anson

A popular seasoning blend sold at Trader Joe’s is a bit too spicy as far as police in South Korea are concerned.

“Everything but the Bagel Sesame Seasoning Blend” is made with sesame seeds, dried garlic and onion, sea salt, and poppy seeds. 

Those poppy seeds come with “trace amounts of morphine and codeine” according to forensics tests, which is a violation of South Korea’s Narcotics Control Act. When not washed thoroughly, the seeds can become contaminated with opium alkaloids from the sap of poppy plants during harvesting.

While the amount of opium is minuscule, it’s enough to worry South Korean police, who recently warned the online marketplace Karrot to stop reselling the Trader Joe’s seasoning. 

The seasoning blend was banned in South Korea in 2022, but some South Korean tourists visiting the U.S. buy it as a souvenir and when they get home list the seasoning for sale on Karrot, often at inflated prices due to its notoriety.    

“Even if a product is legally sold overseas, it may be classified as a narcotic substance or a prohibited import in Korea, so particular caution is required,” a Seoul police official told The Korea Herald. "Not only sellers but also buyers can be subject to criminal punishment."

Karrot agreed to remove all listings for the seasoning blend on July 27, and its website now displays warning pop-ups when users try to list it for sale.

In 2019, the U.S. Drug Enforcement Administration classified unwashed poppy seeds as Schedule II controlled substances, claiming they were “qualitatively similar” to opioid pain medications. 

Poppy seeds that are properly washed and used as food are legal in the United States, but contaminated seeds occasionally slip through and cause trouble.  

Eating a muffin or bagel with poppy seeds is risky for someone about to take a drug test, since it takes only a few poorly washed seeds to result in a positive drug test for opiates. That could lead to a patient being dismissed by their doctor or an employer refusing to hire someone.

Some patients with poorly treated pain grow their own poppies and make a tea from the seeds to use as an analgesic. It’s a risky process, since it's hard to control the opioid strength of the tea – which has led to addiction and even some fatal overdoses. Potentially lethal doses of morphine have been found in some poppy seed teas.

The Center for Science and Public Interest (CSPI) has been urging the FDA for years to more tightly regulate poppy seeds by setting a limit for opiate contamination, but so far the agency has yet to set any guidelines.

“FDA is not advising consumers to avoid consuming poppy seed-containing foods. Although FDA is aware of some reports of consumption of poppy seed-containing foods being associated with negative health effects, FDA is particularly concerned about the misuse of poppy seeds,” the agency says on its website. “To date, FDA has received 11 reports of deaths purportedly associated with the consumption of homemade poppy seed tea.”