Anti-Inflammatory Drugs May Increase Risk of Pain Becoming Chronic

By Pat Anson

Aspirin, ibuprofen and other non-steroidal anti-inflammatory drugs (NSAIDs) have long been used to relieve back pain, muscle aches and other types of acute, short-term pain. The medications work by reducing inflammation, and are consider safer than stronger analgesics like opioids.

It turns out NSAIDs may do more harm than good by increasing the risk of acute pain becoming chronic.

In a series of studies on lab animals and humans, a team of researchers at McGill University found the NSAIDs, steroids, and other drugs that block inflammation may inhibit the body’s natural healing process. That can make the pain last longer than it should, according to research findings published in Science Translational Medicine.

“Clinical data showed that the use of anti-inflammatory drugs was associated with increased risk of persistent pain, suggesting that anti-inflammatory treatments might have negative effects on pain duration,” wrote lead author Jeffrey Mogil, PhD, a Professor of Pain Research at McGill University.

Mogill and his colleagues studied the transition from acute to chronic low back pain (LBP) in 98 adults by analyzing their immune cells. They focused on neutrophils, a type of white blood cell that is attracted to sites of inflammation and releases chemicals that promote an immune response to fight infection and heal tissue.

In participants whose lower back pain resolved and did not become chronic, researchers found evidence that their neutrophils and other natural biological processes performed normally, protecting them from transitioning to chronic pain.

Participants whose pain turned chronic showed signs that the healing process and neutrophils were impaired. This suggests that anti-inflammatory drugs that block neutrophils may interfere with the healing process by reducing inflammation too soon.

To test their theory, researchers analyzed health data from 500,000 people in the UK Biobank project, a long-term research study, to see if the medications they took for acute back pain had any negative consequences. They found that people who took NSAIDs had a higher risk of reporting chronic back pain 2 to 6 years later. Those who took antidepressants, which do not interfere with inflammation, did not have a higher risk of chronic pain.   

In animal studies, the McGill researchers found that laboratory mice given anti-inflammatory drugs had pain that lasted up to ten times longer than normal. Interestingly, mice given gabapentin, morphine or lidocaine – analgesics that do not have anti-inflammatory properties – did not experience longer pain episodes.

None of this proves anything – correlation is not causation – but it suggests that anti-inflammatory drugs may not be good for long-term pain management. They may be effective for short-term pain relief, but have the unintended effect of making pain last longer. If confirmed in future studies, researchers say their findings could have a substantial impact in how we manage pain.

“Together, our results suggest that active immune processes confer adaptation at the acute pain stage, and impairment of such inflammatory responses in subjects with acute LBP increases the risk of developing chronic pain,” researchers said. “Specifically, our data suggest that the long-term effects of anti-inflammatory drugs should be further investigated in the treatment of acute LBP and likely other pain conditions.”     

Online Emotional Support Therapy Modestly Reduces Chronic Pain

By Pat Anson

An online support program designed to “retrain the emotional brain” modestly reduces chronic pain and helps patients keep their negative emotions in check, according to a small pilot study in Australia.

Many people with chronic pain also develop anxiety and depression, but are unable to get psychological treatment because they live in rural areas or have mobility issues, and don’t have easy access to a therapist.

“We’ve known now for some time that chronic pain is more than just ‘Ouch, it hurts.’ It’s more than a sensory experience, it’s incredibly emotional,” says lead author Nell Norman-Nott, PhD, a research fellow at the University of New South Wales and clinical trial manager at the NeuroRecovery Research Hub.

Norman-Nott and her colleagues enrolled 89 people with chronic pain in the “Pain and Emotion Therapy” program. Half of the patients participated in 8 weekly group sessions over Zoom, in which a therapist teaches them emotional skills such as distraction, breathing exercises, and relaxation and self-soothing techniques.

The other participants received the treatment they were already getting, such as medication or physical therapy, and served as a control group.

The study findings, published in JAMA Network Open, show that after 9 weeks there were moderate improvements in depression, anxiety and sleep in those that received online therapy. But there was no change in pain intensity compared to those in the control group.

However, after a 6-month follow-up period, participants reported a 10% reduction in their pain levels, as well as continued improvement in their emotions and sense of well-being.

One of them is Janelle Blight, who lives with chronic back pain, arthritis and neuropathic pain. For the first time in 30 years, she was able to reduce her morphine dose after getting online therapy.

“I’ve been on a lot of opioids and things like that, but I’ve had nothing or found no course that’s been able to help take away the pain or help control the pain at home,” said Blight. “By doing the course, I’ve been able to learn how to reduce my emotional side of my pain, which has helped my chronic pain in the end.”

During a briefing with reporters, researchers called the study a “major step forward in pain care.” But in the actual study, they said the 10% reduction in pain intensity after six months was not well understood and “should be treated with caution.” The improvement was dependent on participants continuing to use the emotional skills they developed during online therapy.

Researchers hope to build on what they’ve learned with a larger study involving 300 participants in 2026. Registrations are open (for Australians only) on the NeuroRecovery Research Hub website.

How Workplace Conditions Contribute to Chronic Pain and Mental Health Issues

By Pat Anson

If you are of a certain age – like me – you’ll remember when computers started entering the workplace in the 1980’s. There was a huge learning curve, but eventually work became faster and more efficient.

There was also a tradeoff: employees reported back and neck pain from sitting at keyboards all day, and carpal tunnel syndrome became a thing. Companies learned about the hazards of repetitive motion, and how chair height, limited desk space and poorly shaped computer mouses affected worker health, absenteeism and productivity. A new industry was born: ergonomics.

Flash forward 40 years and companies are now being urged to think about “emotional ergonomics” – how workplace stress contributes to anxiety, depression, burnout, and chronic pain.

“Physical pain is often a symptom of deeper, underlying stressors—from job pressures to mental health challenges. Addressing industrial ergonomics without considering emotional well-being is an incomplete strategy. The most forward-thinking companies recognize that true injury prevention must integrate both,” says Kevin Lombardo, CEO of the DORN Companies.

DORN has partnered with organizations that specialize in ergonomics, business psychology, and suicide prevention on a new white paper called “Emotional Ergonomics: How the Intersection of Industrial Ergonomics, Pain, and Mental Health Shapes Worker Wellbeing.”

The paper’s main findings are that workplace conditions deeply affect the physical and mental health of workers, and that organizations must address them together to have a healthy, high-performing workforce. Workplace stress affects 40% of employees in the United States and contributes to about $190 billion in added healthcare costs.

Unlike the 1980’s, when most jobs entailed a 40-hour work week and were performed outside the home, today’s knowledge-driven economy blurs the lines between professional and personal lives. Employees may get work-related emails or texts at all hours of the day and night, and a growing number work from home. This increases exposure to stress, cognitive demands, poor sleep habits, and the psychosocial risks that come with juggling work, family and personal time.

A recent study found that stress and anxiety have become the most common work-related injuries, accounting for over half (52%) of new cases. That trend is mirrored in Google searches for “burnout,” which have risen dramatically in the last 10 years.

“This research signals a necessary shift in how we approach workplace well-being. Emotional Ergonomics bridges the gap between physical safety and mental resilience, ensuring that employee health is not just a compliance checkbox but a business imperative. Organizations that fail to recognize this connection risk long-term workforce instability and financial strain,” says Dr. Sally Spencer-Thomas, President of United Suicide Survivors International.

Common psychosocial hazards in the workplace include:

  • Excessive workload and time pressures

  • Toxic relationships between coworkers and supervisors

  • Hazing, bullying, harassment and discrimination

  • Exposure to workplace accidents and trauma

  • Low autonomy and limited decision-making

  • Job insecurity

  • Work-Life disruption

To address these issues, companies can adjust workloads and allow for more flexible scheduling; adopt health and wellness programs; train supervisors in empathetic communication skills; and allow for “quiet time” and space where workers can decompress from job strain.

The goal is to view workers not as cogs in a machine, but as individuals with different physical, emotional, and psychological needs. An “I’ve got your back” mentality in the workplace builds trust and helps employees feel valued.  

To learn more about the study findings and ways to build emotional ergonomics, you can sign up to watch a live webinar on Wednesday, May 21.

Forced Tapering: Only Chronic Pain Patients Are Treated This Way

By Neen Monty

Imagine this: A patient, let’s call her Sue, has severe depression. Her GP prescribes an anti-depressant and refers her to a psychologist. Sue is advised to come back in four weeks. Which she does.

She’s not doing better, so the dose is increased. Sue is reviewed two more times over the next eight weeks, and each time her dose is increased.

Sue starts feeling better. The medication is working. The darkness has lifted, the black dog has been banished. She is grateful to her GP.

The GP is also happy. It has taken many weeks, but the GP raised the dose to find the minimum effective dose that controls Sue’s depression.

Sue comes back in another four weeks. She is happy, back at work, and socialising again. Life is good!

That’s when the GP tells her that it’s time to taper the anti-depressants.

Wait, what?

Or how about this: Sue has high blood pressure. She is at her GP for her yearly physical and the hypertension is discovered. The doctor prescribes a blood pressure medication and advises Sue to return in two weeks. At this review, her blood pressure is still too high, so the dose is increased.

Sue has two more dose increases, and her blood pressure falls into the normal range. She is experiencing no side effects and is very happy with the treatment.

When Sue sees her GP again with perfect blood pressure, he is pleased. Then he tells her it’s time to taper off the medication.

What if Sue had high cholesterol? Or high blood sugar? Or asthma? Epilepsy maybe?

I think you see where I am going with this.

The tapering would never happen, because it’s ludicrous and makes no sense, medically or otherwise. In these situations, people like Sue are often advised that they need to be on a medication for rest of their lives.

Where in medicine do doctors increase the dose of a medication until the symptoms are well managed and the patient is doing better -- and then gets tapered?

Only when the patient has chronic pain and is on opioid therapy. Doctors will prescribe a trial of opioids, which prove to be effective. The patient reports well-controlled pain, no significant side effects, and they are back at work, socialising, and living life again.

And then the doctor starts tapering the opioids. Against the patient’s wishes.

Utter insanity.

That’s not “evidence-based medicine.” There is no evidence to support this practice. I know what the theory is, and what doctors have been taught. But it’s not realistic. Yet many doctors don’t question it.

The theory is that once a patient gets pain relief, they will learn how to manage it without opioids. They’ll start to exercise and meditate, see a psychologist, work on their sleep hygiene, and get proper nutrition.

Except these other modalities will do nothing for severe, disabling pain.

Please point me to one study that shows that improving sleep will reduce the pain of multiple sclerosis, chronic inflammatory demyelinating polyneuropathy, or Parkinson’s disease. Or one study that shows cognitive behavioral therapy or mindfulness will reduce the pain of rheumatoid arthritis and lupus.

Those treatments may be helpful in very small ways. But their effect has been vastly overstated for chronic secondary pain -- pain that is caused by an injury, tissue damage, or disease.

Lifestyle modification can have an impact on a person who has mild to moderate primary pain -- chronic pain that does not have a known pathological cause. That pain is sometimes driven by emotional or psychological causes, so psychological treatments might be effective.

But they are ineffective for chronic secondary pain.

People will feel better on opioids, but its not “euphoria.” It’s because they can start exercising again, restart their hobbies, and return to work. They’ll feel happy again. Those positive things happen because their pain is now being treated.

Take away the pain medication, and the pain will return. The career grinds to a halt, the social life disappears, depression returns. Exercise is impossible while in severe pain. Everything returns to terrible.

There is no magic trick that can replace opioids. There is nothing else that will touch severe pain, be it acute or chronic.

And so, for doctors to provide a trial of opioids for secondary pain with the goal of eventually tapering patients is insanity. The only reason opioids should be tapered is if there are intolerable side effects, if they are not effective for the pain, or the patient wants to taper.

No one should be forcibly tapered. Ever. Forced tapering leads to a pain crisis, suicidal ideation, overdose and death. That’s what the science says.

Opioids are safe and effective when taken long term by a select minority of people – those who live with severe, disabling pain due to an incurable disease or injury.

Think about how cruel it is to provide them with a solution to their pain, to give them their life back, and then take it away.

Its abhorrent.

Its barbaric.

It’s not medicine. It’s not science. It’s not human.

Neen Monty is a writer and patient advocate in Australia who is dedicated to challenging misinformation about pain management. Drawing on lived experience and scientific research, Neen has created a website for Pain Patient Advocacy Australia that is full of evidence that opioids can be safe and effective, even when taken long term. You can also subscribe to her free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Top 3 Ways I Make Money While Living With Chronic Pain 

By Crystal Lindell 

Living with chronic pain can make it difficult to navigate traditional employment, due to the physical challenges and the unpredictability of our symptoms   

Unfortunately, we still need money to exist in our society, so I cobble together a living every month with various side jobs that I try to make into a whole job. Below is a look at some of those jobs, and the pros and cons of doing them if you have chronic pain or any sort of chronic illness.  

One large disclaimer is that none of these jobs offer health insurance. For me, for now, that just means that I don’t have insurance and I pay for medical care with cash. But I know a lot of others in a similar situation who either qualify for government insurance or they are able to purchase insurance on the government marketplace. 

Another disclaimer is that having a bunch of side jobs will make doing your taxes much more difficult, so try to put money away for that throughout the year in preparation for it. 

DoorDash

Pros: Flexible schedule, options for same-day pay, low barrier to entry. 

Cons: Success varies greatly based on where you live; the work can be physically exhausting; customers can be unpredictable and difficult; and there’s wear and tear on your car.

I started doing DoorDash in March after my cat Princess D was diagnosed with feline diabetes, and I needed to come up with some extra money for her treatment fast. 

I had a friend who told me she made $400 in four days doing DoorDash, and that was enough incentive to get me to sign up for the Dasher app. 

I live in a rural area where there are few DoorDash customers, so I drive about 20 minutes to a mid-sized city, where there are more customers and I can easily make $100 in about 4-6 hours of work. I’ve noticed that about 10 percent of my earnings go to gas, so I usually do one extra order each night to cover that. 

While there is the possibility of very low-paying orders of just $2, as long as customers tip, each order is usually at least $5 or as much as $15 in my area. 

There’s also an option to do “shop and deliver” orders, where you basically do someone’s grocery shopping. You don’t get offered those jobs at first, but as you get more experience in the app, they will start to give them to you. I had one that paid $60 for a little over an hour of shopping, because I was shopping three grocery orders simultaneously. That’s a great way to increase your earnings. 

I really, really like how flexible DoorDash is and that they offer a couple different ways to get paid the day you work. So if you need some quick cash for something like a utility bill or even just a fun outing, it’s possible to make the money fast and get paid fast. 

In the beginning, I worked mostly dinner hours and focused on Thursday through Sunday, because that’s when the app is the busiest. But after you earn various status levels, they give you more options for working whatever hours you want. Now I’m able to go out during the day, if that works for me. 

Best of all, if I’m having a bad pain day, I don’t do Doordash or can I work a very short shift. That’s flexibility that most traditional jobs don’t offer. 

Plus, if you need to stay below certain income thresholds to qualify for government benefits, it allows you to work exactly as much as you want/need to. 

If you decide to try it, I highly recommend joining some online DoorDash support groups on places like Facebook and Reddit. They are full of tips for drivers and can help you navigate the app and the job as a whole. 

Obviously, doing gig work like DoorDash will put a lot of wear and tear on your car, so you’ll need to keep up with vehicle maintenance. 

But if you’re looking for quick cash that you can make working your own schedule, then DoorDash and other similar gig work like UberEats can be a great way to do that. 

Freelance Writing

Pros: Some flexibility, can pay well, and can often be done at home

Cons: High barrier to entry; basically have to have connections to get work; and the work can be very unsteady.

I have a lot of professional experience as a writer and editor, so after I got laid off from my full-time journalism job in 2022, I had a few people reach out to me with freelance opportunities. 

This has been one of the better paying ways I make money, with some jobs paying as much as $50/hour or more. 

Even if you don’t have experience, that doesn’t mean you can’t freelance. If you have a special skill of any sort, whether it’s painting, photography or house cleaning, you can usually just post on your social media that you’re looking for work and you may be surprised by how many people reach out. 

My main advice would be to charge by the project rather than by the hour, so that you don’t have to track your hours as you go, and you don’t have to worry about any awkwardness between you and the client regarding how fast you’re working. 

If you’re setting your own rates, you have to factor in taxes and healthcare, so you should aim to make about as much per hour as you’d want to make yearly if you multiplied it by 1,000. So if you want to make $60,000 a year, you’ll want to charge a rate that works out to about $60/hour.

The biggest con to freelancing is that the work can be unsteady, which means you can’t really count on the income from month to month. For me, it’s usually based on what the publication or company I’m writing for needs at any given time. If they don’t need me, there’s no work, and thus, no money. 

Also, in the last few years, Generative AI, like ChapGPT, has dried up some of the writing and marketing work that used to be more plentiful for me. I suspect that trend will continue for my industry and others. 

However, I love writing, and freelancing allows me to be choosy about which writing jobs I want to take, so that I can focus on the things l’m passionate about, like writing for Pain News Network. Plus, making any money at all from my writing always feels like a victory to me. 

Selling Used Lego Online 

Pros: Fully done at home, can lead to a decent daily income stream, immediate pay, and it’s fun.

Cons: Relatively high barrier to entry because you have to invest in Legos and set up your own virtual store. It takes many hours of work to get things off the ground.

My fiance and I also run a virtual store where we sell used Lego. We buy bulk Lego from private sellers, wash them, sort them, inventory what we have, and then sell them by the piece. 

I’m not entirely sure I would really recommend this unless it’s something you’re passionate about, as it has been a LOT of work to run the store. And we have to use multiple rooms in our house to store Lego. 

We’ve also had some generous help from relatives, who have helped front the cost of the bulk Lego purchases we get, which helps a lot. 

But we’ve been running the store for a few years now, and it brings in a very steady stream of daily proceeds. And the more we expand the store, the more we tend to make. 

It’s also great to be able to work on the store at home and on our own schedule. 

There are other ways to make money selling used items online, and I know a lot of people make a living selling things on sites like eBay. But again, I really don’t recommend it unless it’s a product you’re really passionate about. 

For example, if you already love thrifting clothes, you may be able to find some cheap but valuable items that you can resell online. But you’ll quickly grow bored and frustrated with how much work is involved if you don’t love the process of sourcing in the first place. 

I will confess that even with all of these jobs, we are often tight on money. But we are very rich in other ways. We choose our own schedules, we are happy, we are able to rest when our bodies need it, and we get to spend a lot of time with our beloved cats. 

Maybe some day I’ll be healthy enough, both mentally and physically, to work full-time again, but for now, I’m just enjoying this chapter in our lives and all the flexibility it gives us. 

Researchers Replicate Human Pain in Lab Dish

By Crystal Lindell

Researchers have replicated part of the human nervous system in a lab dish, a method they hope will allow them to study pain and potential treatments without having to inflict pain on humans. 

The research was shared in a study published in Nature, and led by Sergiu Pasca, MD, a Professor of Psychiatry and Behavioral Sciences at Stanford University.

Pasca and his colleagues used stem cells to recreate the four key neurons involved in the “pain pathway” that processes pain in humans. Specifically, they made sensory neurons, spinal cord neurons, thalamic neurons, and cortical neurons, and put them all together. Then they added capsaicin, which is present in hot chili peppers, to see how the neurons respond to painful stimuli. 

They found that the lab dish neurons will sense the pain through specialized receptors and emit electrical signals throughout the pain pathway, just as they do in humans. 

“That makes us believe that we have actually reconstructed the basic component of this pain circuit,” Pasca explains. 

In a video about the findings, Pasca describes how they did the research and why it matters. 

The findings could allow researchers to study pain in humans in a way that doesn’t cause actual pain to humans or research animals. Human pain has often proven tough to study in laboratory animals.

“Their pain pathways are in some respects different from ours,” Pasca said. “Yet these animals experience pain. Our dish-based construct doesn’t.”

The hope is that being able to reconstruct or to build this pain pathway in the lab will allow researchers to study human genetic disorders and other conditions that cause pain, and then eventually to start testing drugs for alleviating pain. 

“This neural circuit in a dish offers us an exciting way to study disease and to speed up drug discovery and therapeutic applications -- essentially providing us with a working model of a very important part of our human nervous system,” Pasca said. 

What Not To Say in the Emergency Room

By Carol Levy

Many years ago, I was a clerk in an emergency room ward. Often the people who came in didn't seem to understand how an emergency room works. Unfortunately, those same misunderstandings exist today.

I have seen a number of online posts and comments by chronic pain patients about their experiences in emergency rooms. The posts tend to be very negative about ERs, often angry, and full of frustration over the way they were treated.

My intention when I started this column was to write about the emergency room experience, and what to expect when you make the choice to go there. I did some research to ensure my facts would still be current, such as how ER departments are configured today.

I found several articles on what not to say to your pain management doctor. To my surprise, the answers mimicked what you should not say in the ER, such as “I just need painkillers” or “I know what I need, just prescribe it.”

Saying that gives the impression that you’re just looking for medication, rather than treatment. It’s not advisable to say that to any doctor, regardless of the situation.  

At the ER, you will first see the receptionist or ward clerk. The next step for most hospitals is the triage person, usually a nurse.  When they ask “What is the reason for your visit?” saying, “I have pain” is not sufficient.

They will inquire about when, where and for how long you’ve had pain, to get a better idea of why you are there. That will help them decide what level of an emergency you are.

It’s important not to expect ER staff to know everything about rare disorders, such as CRPS, trigeminal neuralgia or Ehlers-Danlos syndrome. The chances they have seen or even heard of them are slim. Unfortunately, for many rare disorders, we have to be the ones to educate the staff.

Even if you are in extreme pain, shouting “I have pain!” will not help get what you need. Calmly explaining, as best you can, the cause and level of your pain gives them a better understanding of why you are there, and will help get you seen sooner.

Another “don’t” is asking for a specific opioid, as it can make you appear to be a drug seeker. That’s not fair, I know, but that’s just the way it is in the current anti- opioid environment.

Exaggerating your pain can also be seen as the behavior of someone looking to get drugs. Screaming or yelling “I am in horrible pain! Give me something now!” won't get you what you need. Ultimately, the doctor or nurse will decide if you're exaggerating your pain. If they decide that’s the case, you may get nothing at all.

You also shouldn’t question your doctor's expertise. After all, he is the expert (or at least thinks he is). Asking for clarification is fine, but asking for a second opinion may backfire. It’s another way of saying you don't trust or have faith in the doctor. In the ER, you won't be able to get a second opinion. Whichever doctor sees you is the one you’re stuck with.

The wait in the ER may be a long one. The doctors and nurses may seem to be walking around aimlessly, but they may actually be busy, dealing with patients who have suffered a heart attack, stroke, or severe trauma.

If you are a chronic pain patient, your pain may not be seen as an immediate concern. To ER staff, acute pain could be a sign of a life threatening situation that needs immediate attention.

Many ERs now have private rooms, but some still have ward-like areas. It is nice to have privacy, but they may put you in the ward area because that is the only space available.

These unwritten rules apply to everyone on how to act in the ER. But for those of us with chronic pain, we need to to be extra careful about what lines not to cross.

What lessons have you learned in the ER?

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

Alarming Study Tries to Automate Labeling of Patients with Opioid Use Disorder

By Crystal Lindell

An alarming new study attempts to automate the process of labeling chronic pain patients with Opioid Use Disorder (OUD), by using a computer to scan doctors’ clinical notes. 

A team of researchers analyzed medical records for over 8,000 patients with chronic pain, and then used an automated process to scan clinical notes from doctors, patient demographics, and diagnostic codes. The automated process was then compared to whether patients had already been given a diagnostic code for OUD. 

The researchers claim that their automated approach out-performed diagnostic codes when it came to finding patients with OUD. The codes are a key part of healthcare and are used by doctors not only to make a diagnosis, but to get reimbursed by insurers for treating patients.  

The authors say the diagnostic codes are “unreliable and underused,” and claim that their automated approach will do a better job predicting which patients are at risk for OUD and which once already have it.

“This automated data extraction technique may facilitate earlier identification of people at risk for and who are experiencing problematic opioid use, and create new opportunities for studying long-term sequelae of opioid pain management,” wrote lead author Alvin Jeffery, PhD, an Assistant Professor in the Department of Biomedical Informatics at Vanderbilt University Medical Center.

Jefferey and his colleagues say chronic pain patients treated with opioids are “at high risk of developing an opioid use disorder,” and cite a single study estimating the risk is as high as 18%. Most research puts the probability much lower, at about 1%.  

There are a number of other alarming things about this research. 

First and foremost, using any sort of automated process to label patients as having opioid use disorder is incredibly dangerous. Especially if that automated process applies the label to more patients than doctors already are. 

Also, the researchers used the “Addictions Behaviors Checklist” to determine if patients have OUD. Unfortunately, that checklist is known for lumping in a lot of patients who simply have untreated or under-treated pain. 

For example, one of the items on the checklist is “patient running out of medications early” – which means anyone who isn’t being prescribed enough pain medication could qualify as having OUD. 

Another criteria on the list is “patient expressing concern about future availability of narcotics” – a normal thing to be worried about when opioid shortages are widespread and opioid-phobia is rampant in the medical community. 

Other red flag terms they search for in doctors’ notes are “hoard,” “stash,” “left over” and “storing.” This also overlooks the fact that prescription opioids can be difficult to get, causing  many patients to keep leftover ones, just in case they needed them in the future. A recent PNN survey found that 32% of patients hoarded unused opioids. 

Once a patient gets labeled with OUD, it can quite literally ruin their lives by making it more difficult for them to get their pain adequately treated. That doesn’t just apply to patients with chronic pain. If a surgical patient experiencing post-op pain (as nearly all do) has “possible OUD” in their chart, doctors are much less likely to prescribe opioid pain medication. 

I genuinely worry that we are reaching a point where computers and artificial intelligence will be used en masse to label patients with damaging mental health diagnoses like OUD. And if that takes root, there won’t be any way for patients to counter the diagnosis. 

In fact, one of the biggest problems in healthcare is that there is no right to due process. Once you are given a medical verdict, so to speak, you are often stuck with it. 

We should all be worried that these types of automated diagnostic tools will also be expanded beyond opioid users to label other patients with stigmatizing mental health conditions that impact the quality of the medical care they receive going forward.

At this point, I’m not sure what patients can even do to stop this from happening, but my hope is that bringing more awareness to the issue will at least slow its progression. 

I personally would judge any doctors who would rely on any sort of automated process to give a patient a dangerous label like OUD, even if such a process is mandated by the hospital they work for, or even the government. 

I hope that doctors will have the moral fortitude to fight back on these types of things. Although if the medical community’s recent history with opioids is an indication, I’m not convinced most of them will stand up for their patients. 

New Guideline Cautions Against Use of Medical Cannabis for Chronic Pain

By Pat Anson

One of the nation’s largest medical organizations has released a cautious new guideline that recommends against the use of medical cannabis for most patients with chronic noncancer pain. The American College of Physicians (ACP) represents over 160,000 internal medicine doctors and medical students in the United States.

The ACP’s “Best Practice Advice,” recently published in the Annals of Internal Medicine, is based on a review of medical cannabis in over three dozen randomized controlled trials and observational studies.

It urges physicians to warn patients that the harms of cannabis and cannabinoid use outweigh their potential benefits. Medical cannabis may produce small improvements in pain, function and disability, but potential harms include addiction and cognitive issues, as well as cardiovascular, gastrointestinal and pulmonary problems.

“This Best Practice Advice is important for practicing physicians when counseling our patients on the potential use of cannabis and cannabinoids to treat their chronic noncancer pain,” said Isaac Opole, MD, President of the ACP.

“As the use of cannabis for medicinal purposes grows it’s critical to open that dialogue and review the emerging evidence related to benefits and harms. We need to raise awareness and get the word out to ensure that patients have the information they need to make informed decisions.” 

The use of cannabis has steadily grown in recent years, with polls showing that nearly one in four U.S. adults have used medical or recreational cannabis at least once in the past year. Although chronic pain is the most common reason patients use medical cannabis, most have never discussed it with their physicians. Many get their information about cannabis from dispensary workers, who typically do not have any medical training.

The ACP recommends against the use of cannabis for chronic pain by young adults and adolescents, patients with substance use disorders, patients with a serious mental illness, patients who are pregnant or breastfeeding, and frail patients at risk of falling. Inhaled cannabis is not recommended for any patients.

There is some evidence that patients with painful neuropathy may benefit from using cannabis products that contain equal amounts of CBD and THC. 

“Evidence shows that in patients primarily with chronic noncancer neuropathic pain, a cannabis formulation with comparable THC–CBD ratio probably results in small improvements in pain severity (about 0.5 to 1.0 points on a zero to 10 pain scale) and function or disability (about 0.4-point improvement on the pain scale),” the ACP said.

“However, the evidence is insufficient to show benefit for other types of chronic noncancer pain. High THC–CBD ratio synthetic or purified products may result in small improvements in pain severity (about 0.5- to 1.0-point on the pain scale) but no change in overall function or disability.”

Currently, 24 states in the District of Columbia have legalized cannabis for adult recreational and medical use. It is legal for medical use only in an another 14 states. 

Research into the pain-relieving benefits of cannabis has been slow in the U.S., largely due to marijuana’s status as a Schedule 1 controlled substance, the same category as LSD and heroin. The DEA dragged its feet on implementing a request from the Biden Administration to reclassify marijuana as a Schedule 3 controlled substance that could be used for medical purposes. Rescheduling marijuana does not appear to be a priority for the Trump Administration.

There are only three cannabis-based medicines approved for use by the FDA: dronabinol and nabilone, which are used to treat nausea and loss of appetite, and a concentrated form of CBD used to control seizures from childhood epilepsy.

A German biotech company is in preliminary talks with the FDA about approving an experimental cannabis extract for chronic low back pain. A recent study in Australia found patients with chronic pain and other health conditions showed significant improvement in their quality of life, fatigue and sleep after taking cannabis oil over a one-year period. There were also small improvements in pain, anxiety and depression.

Cannabis Oil Has Long-Term Benefits for Chronic Health Conditions

By Pat Anson

Patients suffering from chronic pain and other chronic health conditions showed significant improvement in their quality of life, fatigue and sleep after taking cannabis oil over a one-year period, according to a new Australian study published in the journal PLOS One. Anxiety, depression and pain also improved during the course of the study, one of the first to demonstrate the long-term benefits of medical cannabis.

Researchers at the University of Sydney followed over 2,350 patients from across Australia who ingested cannabis oils containing both THC and CBD. Nearly two-thirds of the participants suffered from chronic musculoskeletal or neuropathic pain. Others lived with insomnia, depression, fatigue and anxiety. Participants did not get adequate relief from conventional treatments.   

Researchers found that the initial improvements in health over three months were maintained over 12 months. Because there was no control or placebo group, the improvements can’t be directly attributed to cannabis oil. But researchers noted that most of the participants stopped or reduced their use of opioid pain medication by the end of the study.

“This is promising news for patients who are not responding to conventional medicines for these conditions," said lead author Margaret-Ann Tait, a Research Manager and PhD Student at Sydney Nursing School, University of Sydney. 

The ratio of THC and CBD in the cannabis oil varied. Patients with conditions like fatigue or insomnia did better with oils that contained more THC; while those with chronic pain did better with higher ratios of CBD.

“We observed differences in the degree of improvement in fatigue, insomnia, anxiety, and depression depending on the ratio of CBD and THC in average daily MC (medical cannabis) doses. For these outcomes, average daily doses of THC-dominant MC was associated with greater odds of improvement than CBD:THC-balanced MC,” researchers said.

“Our findings suggest that people with chronic pain conditions experience better outcomes over time on lower doses of CBD when combined with smaller amounts of THC at a ratio of 10:1.”

Because this was an observational study, with different ratios of THC and CBD, researchers said they could not draw definitive conclusions about which ratios work best for each condition. The oils are made by Little Green Pharma , which funded the Quality of Life Evaluation Study (QUEST).

A 2023 survey of Australian patients with chronic illness found significant improvements in their physical and mental health after they started using medical cannabis. Most of the cannabis products in that study were oils containing CBD and/or THC.   

Sickest Patients Face Insurance Denials Over Prior Authorization

By Lauren Sausser, KFF Health News

Sheldon Ekirch spends a lot of time on hold with her health insurance company.

Sometimes, as the minutes tick by and her frustration mounts, Ekirch, 30, opens a meditation app on her phone. It was recommended by her psychologist to help with the depression associated with a stressful and painful medical disorder.

In 2023, Ekirch was diagnosed with small fiber neuropathy, a condition that makes her limbs and muscles feel as if they’re on fire. Now she takes more than a dozen prescriptions to manage chronic pain and other symptoms, including insomnia.

“I don’t feel like I am the person I was a year and a half ago,” said Ekirch, who was on the cusp of launching her law career, before getting sick. “Like, my body isn’t my own.”

Ekirch said specialists have suggested that a series of infusions made from blood plasma called intravenous immunoglobulin — IVIG, for short — could ease, or potentially eradicate, her near-constant pain.

But Ekirch’s insurance company has repeatedly denied coverage for the treatment, according to documents provided by the patient.

Patients with Ekirch’s condition don’t always respond to IVIG, but she said she deserves to try it, even though it could cost more than $100,000.

“I’m paying a lot of money for health insurance,” said Ekirch, who pays more than $600 a month in premiums. “I don’t understand why they won’t help me, why my life means so little to them.”

SHELDON EKIRCH

For patient advocates and health economists, cases like Ekirch’s illustrate why prior authorization has become such a chronic pain point for patients and doctors. For 50 years, insurers have employed prior authorization, they say, to reduce wasteful health care spending, prevent unnecessary treatment, and guard against potential harm.

The practice differs by insurance company and plan, but the rules often require patients or their doctors to request permission from the patient’s health insurance company before proceeding with a drug, treatment, or medical procedure.

The insurance industry provides little information about how often prior authorization is used. Transparency requirements established by the federal government to shed light on the use of prior authorization by private insurers haven’t been broadly enforced, said Justin Lo, a senior researcher for the Program on Patient and Consumer Protections at KFF, a health information nonprofit that includes KFF Health News.

Yet it’s widely acknowledged that prior authorization tends to disproportionately impact some of the sickest people who need the most expensive care. And despite bipartisan support to reform the system, as well as recent attempts by health insurance companies to ease the burden for patients and doctors, some tactics have met skepticism.

Some insurers’ efforts to improve prior authorization practices aren’t as helpful as they would seem, said Judson Ivy, CEO of Ensemble Health Partners, a revenue cycle management company.

“When you really dive deep,” he said, these improvements don’t seem to touch the services and procedures, such as CT scans, that get caught up in prior authorization so frequently. “When we started looking into it,” he said, “it was almost a PR stunt.”

The ‘Tipping Point’

When Arman Shahriar’s father was diagnosed with follicular lymphoma in 2023, his father’s oncologist ordered a whole-body PET scan to determine the cancer’s stage. The scan was denied by a company called EviCore by Evernorth, a Cigna subsidiary that makes prior authorization decisions.

Shahriar, an internal medicine resident, said he spent hours on the phone with his father’s insurer, arguing that the latest medical guidelines supported the scan. The imaging request was eventually approved. But his father’s scan was delayed several weeks — and multiple appointments were scheduled, then canceled during the time-consuming process — while the family feared the cancer would continue to spread.

EviCore by Evernorth spokesperson Madeline Ziomek wrote in an emailed statement that incomplete clinical information provided by physicians is a leading cause of such denials. The company is “actively developing new ways to make the submission process simpler and faster for physicians,” Ziomek said.

In the meantime, Shahriar, who often struggles to navigate prior authorization for his patients, accused the confusing system of “artificially creating problems in people’s lives” at the wrong time.

“If families with physicians are struggling through this, how do other people navigate it? And the short answer is, they can’t,” said Shahriar, who wrote about his father’s case in an essay published last year by JAMA Oncology. “We’re kind of reaching a tipping point where we’re realizing, collectively, something needs to be done.”

The fatal shooting of UnitedHealthcare CEO Brian Thompson on a New York City sidewalk in December prompted an outpouring of grief among those who knew him, but it also became a platform for public outrage about the methods insurance companies use to deny treatment.

An Emerson College poll conducted in mid-December found 41% of 18- to 29-year-olds thought the actions of Thompson’s killer were at least somewhat acceptable. In a NORC survey from the University of Chicago conducted in December, two-thirds of respondents indicated that insurance company profits, and their denials for health care coverage, contributed “a great deal/moderate amount” to the killing.

Instagram accounts established in support of Luigi Mangione, the 26-year-old Maryland suspect accused of murder and terrorism, have attracted thousands of followers.

“The past several weeks have further challenged us to even more intensely listen to the public narrative about our industry,” Cigna Group CEO David Cordani said during an earnings call on Jan. 30. Cigna is focused on “making prior authorizations faster and simpler,” he added.

The first Trump administration and the Biden administration put forth policies designed to improve prior authorization for some patients by mandating that insurers set up electronic systems and shortening the time companies may take to issue decisions, among other fixes.

Hundreds of House Democrats and Republicans signed on to co-sponsor a bill last year that would establish new prior authorization rules for Medicare Advantage plans. In January, Republican congressman Jefferson Van Drew of New Jersey introduced a federal bill to abolish the use of prior authorization altogether.

Meanwhile, many states have passed legislation to regulate the use of prior authorization. Some laws require insurers to publish data about prior authorization denials with the intention of making a confusing system more transparent.

Reform bills are under consideration by state legislatures in Hawaii, Montana, and elsewhere. A bill in Virginia approved by the governor March 18 takes effect July 1. Other states, including Texas, have established “gold card” programs that ease prior authorization requirements for some physicians by allowing doctors with a track record of approvals to bypass the rules.

No one from AHIP, an insurance industry lobbying group formerly known as America’s Health Insurance Plans, was available to be interviewed on the record about proposed prior authorization legislation for this article.

But changes wouldn’t guarantee that the most vulnerable patients would be spared from future insurance denials or the complex appeals process set up by insurers. Some doctors and advocates for patients are skeptical that prior authorization can be fixed as long as insurers are accountable to shareholders.

Kindyl Boyer, director of advocacy for the nonprofit Infusion Access Foundation, remains hopeful the system can be improved but likened some efforts to playing “Whac-A-Mole.” Ultimately, insurance companies are “going to find a different way to make more money,” she said.

‘Unified Anger’

In the weeks following Thompson’s killing, UnitedHealthcare was trying to refute an onslaught of what it called “highly inaccurate and grossly misleading information” about its practices when another incident landed the company back in the spotlight.

On Jan. 7, Elisabeth Potter, a breast reconstruction surgeon in Austin, Texas, posted a video on social media criticizing the company for questioning whether one of her patients who had been diagnosed with breast cancer and was undergoing surgery that day needed to be admitted as an inpatient.

The video amassed millions of views.

In the days following her post, UnitedHealthcare hired a high-profile law firm to demand a correction and public apology from Potter. In an interview with KFF Health News, Potter would not discuss details about the dispute, but she stood by what she said in her original video.

“I told the truth,” Potter said.

The facts of the incident remain in dispute. But the level of attention it received online illustrates how frustrated and vocal many people have become about insurance company tactics since Thompson’s killing, said Matthew Zachary, a former cancer patient and the host of “Out of Patients,” a podcast that aims to amplify the experiences of patients.

For years, doctors and patients have taken to social media to shame health insurers into approving treatment. But in recent months, Zachary said, “horror stories” about prior authorization shared widely online have created “unified anger.”

“Most people thought they were alone in the victimization,” Zachary said. “Now they know they’re not.”

Data published in January by KFF found that prior authorization is particularly burdensome for patients covered by Medicare Advantage plans. In 2023, virtually all Medicare Advantage enrollees were covered by plans that required prior authorization, while people enrolled in traditional Medicare were much less likely to encounter it, said Jeannie Fuglesten Biniek, an associate director at KFF’s Program on Medicare Policy.

Furthermore, she said, Medicare Advantage enrollees were more likely to face prior authorization for higher-cost services, including inpatient hospital stays, skilled nursing facility stays, and chemotherapy.

But Neil Parikh, national chief medical officer for medical management at UnitedHealthcare, explained prior authorization rules apply to fewer than 2% of the claims the company pays. He added that “99% of the time” UnitedHealthcare members don’t need prior authorization or requests are approved “very, very quickly.”

Recently, he said, a team at UnitedHealthcare was reviewing a prior authorization request for an orthopedic procedure when they discovered the surgeon planned to operate on the wrong side of the patient’s body. UnitedHealthcare caught the mistake in time, he recounted.

“This is a real-life example of why prior authorization can really help,” Parikh said.

Even so, he said, UnitedHealthcare aims to make the process less burdensome by removing prior authorization requirements for some services, rendering instant decisions for certain requests, and establishing a national gold card program, among other refinements. Cigna also announced changes designed to improve prior authorization in the months since Thompson’s killing.

“Brian was an incredible friend and colleague to many, many of us, and we are deeply saddened by his passing,” Parikh said. “It’s truly a sad occasion.”

The Final Denial

During the summer of 2023, Ekirch was working full time and preparing to take the bar exam when she noticed numbness and tingling in her arms and legs. Eventually, she started experiencing a burning sensation throughout her body.

That fall, a Richmond-area neurologist said her symptoms were consistent with small fiber neuropathy, and, in early 2024, a rheumatologist recommended IVIG to ease her pain. Since then, other specialists, including neurologists at the University of Virginia and Virginia Commonwealth University, have said she may benefit from the same treatment.

There’s no guarantee it will work. A randomized controlled trial published in 2021 found pain levels in patients who received IVIG weren’t significantly different from the placebo group, while an older study found patients responded “remarkably well.”

“It’s hard because I look at my peers from law school and high school — they’re having families, excelling in their career, living their life. And most days I am just struggling, just to get out of bed,” said Ekirch, frustrated that Anthem continues to deny her claim.

In a prepared statement, Kersha Cartwright, a spokesperson for Anthem’s parent company, Elevance Health, said Ekirch’s request for IVIG treatment was denied “because it did not meet the established medical criteria for effectiveness in treating small fiber neuropathy.”

On Feb. 17, her treatment was denied by Anthem for the final time. Ekirch said her patient advocate, a nurse who works for Anthem, suggested she reach out to the drug manufacturer about patient charity programs.

“This is absolutely crazy,” Ekirch said. “This is someone from Anthem telling me to plead with a pharmacy company to give me this drug when Anthem should be covering it.”

Her only hope now lies with the Virginia State Corporation Commission Bureau of Insurance, a state agency that resolves prior authorization disputes between patients and health insurance companies. She found out through a Facebook group for patients with small fiber neuropathy that the Bureau of Insurance has overturned an IVIG denial before. In late March, Ekirch was anxiously waiting to hear the agency’s decision about her case.

“I don’t want to get my hopes up too much, though,” she said. “I feel like this entire process, I’ve been let down by it.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

CBD Is a Scam. Will New Cannabinoid Products Be Any Different?

By Crystal Lindell

CBD didn’t do anything for me. I tried different brands, different formats, and different price points because I really wanted it to work. 

I like to describe my experience like this: Wine and grape juice are both made from grapes – but that doesn’t mean a glass of Welch's has the same effect as a glass of wine.

From the beginning, CBD always sounded a little too good to be true. Touted as the “cannabis that doesn’t get you high, but treats chronic pain,” it was supposed to be the new holy grail of pain medicine. After all, doctors are looking for something to give patients that doesn’t give them any pleasurable mental effects, but does actually treat their pain. 

Unfortunately, CBD was too good to be true because the marketing and hype are fake. 

For a while, CBD seemed to be sold in every gas station, supermarket and convenience store. Filling shelves with everything from candies to liquid elixirs. 

But I’ve noticed over the last couple years that a lot of those CBD display cases have either shrunk or disappeared completely. 

It’s not just in my head. A 2023 article from SupplySide Supplement Journal was among the first to report on the downward trend in the sector. 

Headlined: "Major CBD brands report steep annual sales declines,” it focused on the fact that two major brands, CV Sciences and Charlotte’s Web, reported depressed earnings and “significant downsizing initiatives.”  

Almost a year later, The New York Times published a similar article, with the headline “Companies Were Big on CBD. Not Anymore.” 

The article blamed the sales decline on a “lack of federal regulation and a mishmash of state laws [that] made selling products featuring the cannabis-derived ingredient not worth the trouble.” 

I think that’s just generous industry framing. Sales declined because CBD products were not good and inordinately expensive. CBD did not do much of anything for most people, and the price points were astronomical. 

A 2024 study at Bath University in the U.K. makes the point directly. The subhead on a press release reads: "There is no evidence that CBD products reduce chronic pain, and taking them is a waste of money and potentially harmful to health, new research finds." 

“CBD presents consumers with a big problem,” said Professor Chris Eccleston, who led the research at the Centre for Pain Research at Bath. “It’s touted as a cure for all pain but there’s a complete lack of quality evidence that it has any positive effects. It’s almost as if chronic pain patients don’t matter, and that we’re happy for people to trade on hope and despair.”

Eccleston is definitely right there. The views of chronic pain patients are often dismissed. That’s why many doctors are happy to push placebos and snake oils on us, as long as it means they can avoid prescribing any opioids. 

The decline in CBD’s popularity hasn’t stopped the medical industry from trying to find other ways to use cannabinoids to treat pain without causing the mental high. 

Last week, researchers at Stanford University and Washington University School of Medicine in St. Louis announced that they designed a new compound to potentially treat chronic pain by targeting type 1 cannabinoid (CB1) receptors in the peripheral nervous system.

In a paper published in Nature, the researchers said the compound “could effectively treat multiple types of pain in mouse models without causing the psychoactive side effects typically associated with the CB1 receptor or causing the mice to build up a tolerance to it.”

So it’s still being studied in mice, which means it’s a long way off from being offered to humans, if it ever is. 

While this is a synthetic version of a cannabinoid – as opposed to the natural version – I’m skeptical of anything that claims to treat physical pain without psychoactive side effects.  

It’s also frustrating to see researchers still trying to push for this at all. 

In a news release about the study, co-author Alexander Powers,  who conducted the work while earning his PhD in chemistry at Stanford, said: “This molecule shows that we can get a separation between the side effects and the analgesic effects – we can target the CB1 receptor and get the good effects without the bad.”

The most telling part of that quote is at the very end: “without the bad.”

The implication is that psychoactive effects are inherently bad. I disagree. When you’re in extreme pain, it impacts you emotionally and mentally. So it only makes sense that medications that treat pain also improve your mood. That’s a good side effect. 

Maybe research like that coming out of Stanford will lead to new breakthroughs. Maybe they will finally discover the holy grail of pain medication that they desperately seek. But I remain skeptical of any research from people who frame positive effects of pain medication as “bad.” 

Depression and Anxiety Affect 40% of Chronic Pain Patients

By Pat Anson

About 40% of adults with chronic pain have clinical symptoms of depression or anxiety, according to a large new study that calls for the routine screening of pain patients for mental health issues.

Researchers conducted a systematic review and meta-analysis of 376 studies involving nearly 350,000 people with chronic pain around the world. Their findings, published in JAMA Network Open, show that pain patients with fibromyalgia had the highest rates of depression and anxiety, along with those who are younger and female.

“To address this significant public health concern, it is essential to routinely screen for mental health symptoms in clinical settings where people with chronic pain are treated,” wrote lead author Rachel Aaron, PhD, a clinical psychologist at Johns Hopkins University School of Medicine

Aaron and her colleagues found that people with fibromyalgia, complex regional pain syndrome (CPRS) and other types of nociplastic pain -- persistent nerve pain that occurs without tissue damage – were most likely to have depression and anxiety; while those with post-surgical pain, arthritis and other conditions with documented tissue damage were less likely to have mental health issues.

Many patients resent the idea that their pain is “all in their head,” but researchers think emotional stress and trauma may play a causal role in the development of chronic pain.

“The overall pattern of findings aligns with evidence that psychological distress and adverse life experiences increase the risk for chronic nociplastic pain,” researchers said.  “The present findings underscore the need for innovative treatment development to address these prevalent comorbidities, particularly for nociplastic pain.

“For physicians treating individuals with chronic pain in primary care and specialty practice, systematic screening of depression and anxiety is critical, as is having a network of mental health referral sources when a positive screening result is detected. Short-term, cost-effective, and remotely delivered psychological treatments for chronic pain are becoming increasingly available and can be recommended to individuals with chronic pain.”

Previous studies have also found an association between chronic pain, anxiety and depression.

Researchers at McGill University found that people who experienced physical, sexual or emotional abuse as children were 45% more likely to report chronic pain in adulthood. Childhood trauma has also been linked to an increased risk of fibromyalgia, migraine and lupus, as well as mood and sleep problems.

A 2023 study estimates that 12 million adults with chronic pain in the U.S. have anxiety or depression so severe that it limits their ability to work, socialize and complete daily tasks. That study also recommends that pain patients be routinely evaluated for anxiety and depression.

The Pain Scale is a Pain, but Doctors Ignore Alternatives

By Crystal Lindell

When I first started having debilitating rib pain more than 10 years ago, doctors would constantly ask me to rate my pain on a scale of 1-10. 

It was the worst pain I had ever experienced, but I didn’t want to sound too dramatic, so I would almost always tell them an 8 or a 9. 

However, I started to notice a troubling pattern: No matter what number I said, the doctors still treated me with the same mostly dismissive attitude. 

So, regardless of whether I said my pain was a 7, a 3, or even an 11, the doctors I was dealing with did not seem to believe me. They seemed to think I was being dramatic no matter what. 

At the time, I blamed myself. Surely I must not be communicating the severity of my pain well, if these doctors are still ignoring me, I thought. 

So I started scrounging around online for alternatives. I assumed that if I just explained myself better, then they would react with the urgency that I felt the situation called for.  

I also thought that perhaps I was picking the wrong number, which was causing doctors to dismiss me as someone who couldn’t accurately assess my own body. 

The first thing I found was a pain scale written out, where each number was explained, like this one from “My Health Alberta.” 

It includes a written description with each number, starting with:

0 = No pain.

1 = Pain is very mild, barely noticeable. Most of the time you don't think about it.

2 = Minor pain. It's annoying. You may have sharp pain now and then.

3 = Noticeable pain. It may distract you, but you can get used to it.

And so on. 

Looking at that chart, I decided that my new rib pain – which was eventually diagnosed as intercostal neuralgia that was caused by Ehlers-Danlos Syndrome – was a: “8 = Very strong pain. It's hard to do anything at all.”

The fact that I would often just lay on the exam table silently crying while I prayed that whatever doctor I was in front of would actually help me, made me feel pretty confident in my assessment of an “8.”. 

It was, indeed, very strong pain that made hard to do anything at all. 

I was also naive enough to believe that if I personally added the descriptor when I gave my number, that it would serve as some sort of magic spell that would finally unlock access to the treatment I needed. 

Alas, that did not work. Doctors just nodded and typed “8” into their little online chart and then moved on through the appointment the same way that they always had: With their trademark unsympathetic arrogance and suggestions about taking more gabapentin.  

After that, I went a step further: I tried to find a pain scale that felt more relevant. Eventually, I discovered the Quality of Life Scale, (QOLS). It’s designed for chronic pain patients to show how their pain is impacting their daily life.  

It's a reverse of the traditional pain scale, in that 0 is the worst pain, while 10 means you're doing pretty well. 

It features descriptions like: 

0: Stay in bed all day. Feel hopeless and helpless about life. 

1: Stay in bed at least half the day. Have no contact with the outside world. 

All the way up to:

10: Go to work/volunteer each day. Normal daily activities each day. Have a social life outside of work. Take an active part in family life. 

At the time, I was about a 4: Do simple chores around the house, minimal activities outside the home two days a week. 

Although those "activities" were just doctor's appointments, I was technically leaving my house every few days.

Looking back, I truly believed that using the QOLS scale with my doctors would be the breakthrough moment for my relationship with them. I remember printing it off and putting it in my healthcare binder full of hope that they would finally understand how bad things were for me. 

Alas, I was mistaken. 

Before I started having chronic pain, I was working a full-time job and a part-time one, and living independently. But my pain had gone untreated for so long that I had cut back on everything possible in my life. I shifted my full-time job to a work-from-home position, quit my part-time job, gave up my apartment, and moved in with family, who lived 2 hours away. 

I still remember thinking that when I told the two doctors I was seeing regularly about how I needed to quit my job and move in with my mom, that they would FINALLY see how severe my pain had been. Afterall, these were the real-life implications of where I was on the QOLS pain scale! 

Wrong again. Instead, both doctors just expressed quiet relief that I was moving out of the area, and thus I’d no longer be their problem! 

Thankfully, when I moved, I did find a new doctor who did take my pain seriously. And although it took some time to get the pain treatment situation under control, it’s been relatively well managed for years now. 

What I have come to realize about the pain scale is that most of the time, it’s not so much an assessment tool as it is a way for patients to feel a false sense of agency over their medical situation.

It’s like a little breadcrumb that doctors give patients to make them feel included in their own healthcare. 

Because in practice, doctors don’t give much weight to whatever number you say your pain is at. Instead, they rely on their own visual and sometimes physical assessment to determine how much pain they think you are in. 

This can be especially problematic for patients from oppressed or marginalized groups, because doctors are less likely to take their pain seriously in general. 

It’s also a huge problem for patients with chronic pain. That’s because when you live with pain every single day, you don’t react to a 10 on the pain scale the same way someone with acute pain would. It’s just not possible to live everyday screaming at the top of your lungs, or performing whatever stereotypical action doctors assume that someone with “real” pain would exhibit. 

For example, one of the things I learned quickly is that I needed to keep myself as calm as possible during a pain flare, because the more stressed and anxious I got, the more it elevated my pain. 

However, a 10 on the pain scale is still just as horrific, even if you’ve been at a 10 for months at a time. And it should elicit the same sense of urgency that would be customary for someone in acute pain saying that their pain was at a 10. 

In fact, I’d go so far as to argue that a 10 for a chronic pain patient can be even more harmful, because if you’re dealing with that level of pain for a long time, it will likely destroy your life. 

Unfortunately, most doctors can’t grasp any of this. So if you show up to an emergency room with an eerie sense of calm while trying to tell them that your pain is a 10/10, they are likely to be very skeptical. 

I wish I could end this column with some sort of solution for patients, but sadly, I don’t think I have one. If your doctor isn’t taking your pain seriously, they probably won’t change their approach just because you show them a different version of a pain scale. 

No, the solution to the frustrating experience of the pain scale will have to come from the other side: from doctors. 

My suggestion is that they start by just believing all patients and then responding accordingly. Unfortunately, under our current healthcare system, I don’t see that happening any time soon.

So all I’ve got for now, is all I’ve ever got: My hope for you that you’re not in too much pain today. 

Experts Divided About Benefits and Harms of Opioid Tapering

By Crystal Lindell

The first time I tried to do a full taper to go off morphine – after having been on it for years – I got hit with days-long withdrawal symptoms. Restless legs, diarrhea, cold sweats, extreme anxiety, insomnia, and more. It was horrible. 

So I called my doctor and asked for advice. He was not helpful, to say the least. He basically said that none of his other patients had ever had any withdrawal symptoms from morphine, so he didn’t know what to tell me. The implication was that this was a “me” problem. 

Looking back, I’m pretty sure that his other patients had just never told him about their withdrawal symptoms, so he assumed that they didn’t have any. That’s when I first realized that doctors were not a great resource for how to taper patients off opioids. 

A new study in the journal Pain Practice confirms many of my suspicions. It explored the  attitudes of healthcare professionals about the benefits and harms of maintaining, tapering or discontinuing long-term opioid therapy. 

The researchers analyzed the opinions of 28 “opioid safety experts.” Of those, 19 were prescribing physicians, while the rest were psychologists, researchers, or healthcare administrators. 

What they found is that there is little consistent advice or help from the “experts” about tapering. If you asked one medical professional for their opinion, you may get a completely different answer from another one. 

For example, over a third of the participants (36%) believe that long-term opioid therapy should be continued, while an equal percentage think opioids should be discontinued. 

More than half (57%) believe that patients can be harmed by tapering and/or discontinuation. But 18% think tapering to a lower dose is not harmful, and 29% think patients won’t be harmed by discontinuation. There were also quite a few “experts” who were neutral on the issue.   

Some recommended slow tapers (even when a prior taper was unsuccessful) and some advocated switching patients to buprenorphine, an opioid sometimes used to treat pain but is more widely used to treat opioid use disorder.

Some would try switching patients to non-opioid pain medications and therapies (even if they were unhelpful in the past), while others favor shared decision-making with patients to give them a role in deciding treatment.

Interestingly, few of the experts said they would assess patients for opioid use disorder or overdose risk.

The bottom line is that there’s little consensus about the right treatment path for patients on long-term opioids. The researchers said medical guidelines that might address these issues “may be difficult to utilize,” leaving doctors on their own to make decisions about professional liability, changing opioid regulations, patient preferences and treatment.

“In the meantime, individual care decisions that involve weighing relative harms should draw on longstanding norms of ethical medical care that call for informed consent and patient-provider conversations grounded in mutual respect,” the authors write.

I’m glad to see them specifically mention "mutual respect” between patients and providers, because there’s an obvious answer to many of these questions: Talk to patients and then believe them. 

I can guarantee you that I, as a longtime pain patient, would have more practical advice about tapering and withdrawal than many doctors or medical experts. There’s a certain amount of insight and empathy that comes from firsthand experience with withdrawal. 

I do give credit to co-author Kurt Kroenke, MD, of the Regenstrief Institute, for warning in a press release that taking patients off opioids “may result in return or worsening of chronic pain, mental health issues, drug seeking and potentially overdose and death.” 

Kroenke also notes that opioids help patients have a family life, hold a job, participate in social activities, and improve their quality of life. 

Indeed, that’s exactly the point: Opioids do help patients in a variety of ways. And in many cases, they are the only effective pain treatment. 

My hope is that future studies like this will include more direct input from patients about their experiences. If researchers really want to figure out the best guidelines for when and how to taper successfully, they should reach out to long-term opioid patients. 

Next time, instead of talking to 28 “experts,” researchers should talk to 28 patients.