How Trump’s False Claim That 300 Million People Died From Drugs Impacts Pain Patients

By Crystal Lindell

President Donald Trump recently claimed that "300 million people died” from drug-related causes last year.

If that were true, it would mean that nearly the entire population of the United States – 342 million people –  died from a drug overdose in 2024.

Trump’s claim is so absurd, that it’s difficult to know what he was trying to say or what he may have meant.

The comment came during a Q&A with reporters, when he was asked about the U.S. strike on a supposed drug-smuggling boat off the coast of Venezuela, an attack the president of Venezuela called "illegal." .

"What's illegal are the drugs that were on the boat and the drugs that are being sent into our country. And the fact that 300 million people died last year from drugs. That's what's illegal," Trump said.

In a community note on X/Twitter, the site’s fact checkers noted that 62 million people worldwide died from all causes in 2024, which “makes it impossible for 300 million people to have died of one single cause.” 

Obviously, the real numbers for drug-related deaths are significantly lower than 300 million. In reality, there were about 80,000 U.S. overdose deaths in 2024. Globally, 600,000 deaths were attributed to drug use in 2019, the most recent data available.

The World Health Organization reported there are 3 million deaths annually due to alcohol and drug use. But a majority of those — 2.6 million — were attributed to alcohol consumption.

So, Trump may have seen the “3 million” and misremembered it as "300 million," while also ignoring the fact that most of those deaths were related to alcohol.

It’s also possible he meant 300-thousand deaths. The president has actually used that number in the past, while adding that he doesn’t believe the overdose numbers the government produces. .

“We don’t want drugs killing our people. I believe we lost 300,000. You know, they always say 95, 100,000. I believe they’ve been saying that for 20 years. I believe we lost 300,000 people last year,” Trump said earlier this month. 

Regardless of where the “300 million” statistic came from, it’s troubling that Trump said it at all, and that there was little correction from the media. There also doesn’t seem to have been any correction from the White House, as far as I can tell.

Slips like this aren’t just annoying, they have very real implications – especially for pain patients – who already know what happens when prescription opioid deaths are exaggerated. The supply of opioid pain medication gets cut.

When people hear it from the president or White House, it carries weight. 

The Trump administration is not alone in this. In 2016, during the Obama administration, the CDC and the White House Office of National Drug Control Policy released three different estimates in one week on the number of Americans that died from prescription opioids. The numbers ranged from a low of 12,700 to a high of 17,536 deaths in 2015.

Aside from the fact that it literally impacts government policies, the wildly inflated numbers also affect how people respond to them in their day-to-day lives..

While medical professionals and policy makers might recognize that “300 million” or “300 thousand” deaths is an exaggeration, they also may assume that it can’t be that too far off if the president is saying it. 

Such a toll would be catastrophic and signal that the U.S. overdose crisis is getting worse, when the actual number of drug deaths is declining.

This false information perpetuates the idea that all opioids, both legal and illegal, are an extremely deadly problem and need to be restricted.  

Then, when a doctor who saw the clip of Trump on the news goes to treat a patient, he may think twice before writing a hydrocodone prescription because he vaguely remembers something about millions of people overdosing.

Loved ones of patients in pain can also be negatively swayed by such fake statistics. For example, say a mother is prescribed 5 mg doses of Norco for cancer pain. Their adult child may assume that even such a low dose has the potential to be deadly, because of what the president said, and they may discourage their mom from taking it.

Ideally, the White House Communications Office would issue some sort of correction of Trump’s statement. But seeing how this happened a few days ago, and they have yet to address it, I assume such a correction is unlikely to ever happen. And they’re hoping we’ll all forget about it.

Any single drug-related death is too many, and we absolutely should be looking into policies that address overdoses in ways that are proven to help. But when advocates have to instead spend time combating misinformation, it just takes time and resources away from the real problem.

Opioids do cause deaths, but they also give millions of people their lives back by alleviating their pain and allowing them to actually function. 

When we only focus on one side of the equation — especially when that focus is marred by widely inaccurate information — the result is just more pain and suffering.

It’s Rare for Chronic Pain Patients to Overdose on Opioids

By Neen Monty

The Penington Institute is an Australian non-profit public health and drug policy research organization. Its core mission is to study drug use “in a safe, considerate and practical way. We seek solutions, not scapegoats. We strive for positive outcomes, not negative stereotypes.”

A most worthy cause.

Each year, Penington releases Australia’s Annual Overdose Report, the country’s most comprehensive study of overdose trends and impacts. I am not against the work of the Penington Institute. On the contrary, they serve a very necessary purpose and have a noble goal.

However, for several years running, they have demonized chronic pain patients and twisted the statistics to inflate the harms of prescription opioids. And this is generally what I write about. To correct the record.

Here’s the download page to Penington’s 2025 report. It documents how many overdoses and what substances were involved. The report relates to data from the 2023 calendar year. Paging through it, something jumped out at me immediately.

Naturally, I jumped straight to the ‘Opioids’ section. There is a table, with key facts. One of these key facts is:

“From 2019-2023, there were 163 unintentional drug-induced deaths involving pharmaceutical opioids as the sole drug type.”

That’s an average of nearly 33 people who died accidentally every year when pharmaceutical opioids were the sole drug type. 33 people. In a country with 27.4 million people.

Does that sound like an opioid crisis to you? Does that sound like a reason to deny tens of thousands of patients access to safe and effective pain relief?

Do you know what immediately occurred to me when I realised that less than 50 people per year die from prescription opioid overdose?

I remembered this 2023 report from the Therapeutic Goods Administration (Australia’s version of the U.S. Food and Drug Administration), justifying their changes to paracetamol scheduling. That’s acetaminophen for those of you in the U.S.

Paracetamol pack sizes were reduced to 16 tablets per packet and supermarkets could only sell two packs per person. Larger packs were only available at pharmacies, and some required a pharmacist’s approval.

Do you know why they made paracetamol harder to get?

Because 50 Australians were dying every year from paracetamol overdoses, with rates of intentional overdose highest among adolescents and young adults.

There was an outcry when the changes came into effect. Chronic pain patients were again being harmed by policy because a different patient group was overdosing.

Because 50 people die of paracetamol overdoses per year in Australia.

Do you get what I am saying?

Paracetamol is still available over-the-counter in Australia, albeit in smaller pack sizes. And yet opioids are almost impossible to access.

Fewer Australians die from prescription opioid overdoses than from paracetamol overdoses. This was true long before any changes were made in opioid scheduling in 2020, making opioids much harder to get.

Opioid prescribing was already declining in 2020, so there was no need to change opioid prescribing practices. Certainly no medical need. In fact, this policy change caused a great deal of harm to those who live with constant, severe pain, and has had no benefits. For anyone.

Please think about it. Reflect upon it. Make it make sense. How is this anything other than a witch hunt?

Paracetamol kills more people than prescription opioids, yet it’s still available over the counter. And doctors are torturing people who live with painful, progressive and incurable diseases, by denying us access to safe and effective pain relief.

Because 33 people die of prescription opioid overdoses every year. While 50 people die of paracetamol overdoses.

Does Australia have an opioid crisis? No.

Does Australia have a prescription opioid crisis? Also no!

We never had a prescription opioid crisis. And we were never heading for one. Prescription opioid overdoes have been falling in Australia since 2018. Check the statistics.

Unlearn what you have been told and learn the true statistics.

There was no need to make changes in 2020. Yet those changes caused interminable suffering to people who live with constant, severe pain from illness or injury.

Most chronic pain patients are still suffering. Many have died.

Does this seem fair to you? Does this seem right? Does it seem reasonable?

Does any of this seem like good policy?

To be clear, I am not saying that opioids should be available over-the-counter. Please do not twist my words to imply that.

Opioids for severe, daily pain should be managed as they were before 2020. By general practitioners who know their patients well.

There should be no dose ceilings because there is no evidence that dose ceilings reduce overdoses and death. GPs are more than capable of prescribing an appropriate dose and duration to manage severe chronic pain.

Instead, chronic pain patients in Australia are forced to go to a pain management specialist, who barely knows them and rarely understands their pain.

People who live with severe, daily pain from disease and injury have a right to pain relief. We need help.

And this year’s Penington report shows that we are not the ones who are overdosing.

It is time to restore access to safe and effective pain relief for those who desperately need it. Chronic pain kills far more often than the opioids prescribed for chronic pain do. Patients die from heart attacks, strokes, hypertension, and other stress-induced conditions when their pain is not treated.  

The true cause of most overdose deaths is polypharmacy: multiple drugs, both legal and illegal, that are often mixed with alcohol.

Targeting people who live with painful, progressive and incurable diseases and injuries, denying us access to pain medication, is never going to reduce overdoses by illicit drug users. They are two different patient populations.

It is not chronic pain patients who are overdosing.

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. She has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s newsletter on Substack, “Arthritic Chick on Chronic Pain.”

5 Myths About Opioids That I Believed, Until I Needed Them

By Crystal Lindell

I had been enduring debilitating pain for months by the time I was given my first hydrocodone prescription for chronic pain in 2013.

At the time, I didn’t even know that hydrocodone was an opioid.

I had only heard of Vicodin being an opioid, and that was only because I lived near the Wisconsin border, where there are lots of Packer fans. The news that former Green Bay quarterback Brett Favre had to go to rehab for his Vicodin use was part of the local conversation.

But I had no idea that hydrocodone was the active ingredient in Vicodin.

It’s been over a decade now, and I have come to rely on opioids to manage the chronic pain I have in my right ribs, which is technically called “intercostal neuralgia.”

Before I needed opioids for pain relief, I used to buy into a lot of common cultural myths about them. Below is a look at what I used to believe, and how my views eventually shifted.

Myth #1: Only People Who ‘Misuse’ Opioids Have Physical Withdrawal

When I got my first hydrocodone prescription, I didn’t know it was a controlled substance with strict limits on how often you can get refills. And I definitely didn’t know that I would go through withdrawal if I stopped taking them abruptly.

My doctor prescribed 10mg pills and the label said: “Take 1-2 every 4-6 hours.”

So, that’s exactly what I did: Two pills every four to six hours.

My pain was (and still is) intense, but at the time I was still trying to keep pace with my pre-chronic pain lifestyle, which meant doing everything possible to push the pain away so that I could work and have a somewhat normal life.

But that meant that I ran out of my prescription early – something I was not aware was even a problem. When the doctor’s office said I would need to wait a couple days for a refill, I didn’t think it would be a big deal. Surely, I could easily ride out a couple of days without hydrocodone, no problem. After all, I had been taking them as prescribed.

Yeah. That’s not what happened. Turns out you actually cannot go from 40 to 80 mg of hydrocodone a day to zero.

I naively went to work that day, and still remember the trauma of spending the entire shift in the bathroom with diarrhea, nausea, horrible flu-like aches, and an odd feeling of anxiety.

Turns out, anyone can go through withdrawal from opioids. There is no magic spell that doctors can cast to give you immunity from it, just because you’re taking opioids exactly as prescribed. Your body doesn’t know the difference.

And that physical withdrawal is also not indicative that you have “a problem.”

In fact, it’s one of the reasons I think the entire conversation around addiction is often more nuanced than people want to admit. Taking a dose to combat withdrawal is often labeled as “misuse” – even though anyone can have withdrawal. 

And anyone who’s been through it knows that you’ll do almost anything to make it stop.

Myth #2: The Best Way to Stop Using Opioids Is Quitting Cold Turkey

There’s a common myth that the best way to stop using an addictive substance is to go cold turkey. That’s usually not true for things like nicotine and alcohol, and it’s also not true for opioids.

I used to believe in the common framing for this. That if you stopped using opioids cold turkey, made it through 72 hours of withdrawal, and then took just one dose, it would reset the whole process. You’d have to go through withdrawal all over again.

That’s not true. In fact, taking a dose after going longer than usual without one is often part of the tapering process that works best for getting off opioids. 

Ideally, you taper off slowly by lowering the amount you’re taking each day. So, if you’re on 40mg of hydrocodone a day, the best way to stop using it is to take 35mg daily for a week or so, then 30 mg, and so on until you get down to zero.

That’s the best way to reach success long-term and actually get off the medication, if that is your goal.

If you’re looking for more realistic tips on how to stop taking opioids, see “A Survival Guide for Opioid Withdrawal” that I wrote for PNN with my partner a few years ago. You can trust the advice because we learned it ourselves the hard way.

Myth #3: Opioid Doses Last as Long as Manufacturers Claim

I was eventually prescribed extended-release morphine pills for my chronic pain, and was told that each one should last a full eight hours. I was also told that hydrocodone should last four to six hours.

Unfortunately, neither of those things are true. So-called “extended release” morphine lasts about four hours, while the short-acting hydrocodone can stop working in just two or three hours.

So, it’s not wise to take another dose whenever your pain comes back. If you do that, you’ll end up running out of your prescription early every month.

Instead, you should expect to go through periods throughout the day when your pain starts to come back – and then you have to count down until your next dose.

Myth #4: Even One Dose of an Opioid Creates a High Risk of Addiction

Before I started taking opioids, I honestly believed the myth that just one 10mg dose of Vicodin could result in life-long addiction.

In reality, that’s nearly impossible. In fact, even among patients who take opioids long-term, the rate of addiction is still incredibly low. Estimates vary widely, but according to experts who have studied it, people who take opioids over long periods have addiction rates of 1 to 3 percent.   

Opioids are often framed as being so addictive that anyone can get hooked, so any exposure to them is dangerous and risky. In reality, low-dose opioids are incredibly safe, and most patients taking prescription opioids never develop an addiction to them

Myth #5: If Someone Is ‘Really’ in Pain, Doctors Will Prescribe Opioids

I am a little ashamed to admit this, but I used to think of a Vicodin prescription as an indicator of whether or not someone’s pain was actually severe.

If a doctor prescribed Vicodin to someone, that meant they were in “real” pain.

Boy, was I wrong.

While dealing with pain myself, I quickly learned that doctors will often ignore severe pain in patients because they don’t want to deal with the hassle of prescribing a controlled substance. That reluctance has only gotten worse since 2013. Much worse.

These days, doctors withhold opioid medication from post-op patients, cancer patients, palliative care patients, and even hospice patients. All of them are still in very real pain though.

Whether or not a doctor validates your pain with an opioid prescription has no bearing on how severe your pain actually is.

There’s a lot of misinformation about opioids and these are just some of the common myths perpetuated about them. While it’s understandable to believe them if you’ve actually never needed opioids, I encourage everyone to keep an open mind. After all, if you wait until you or a loved one needs opioids to see the truth, it may be too late.

How To Get More Pain Relief From Rx Opioids

By Drs. Forest Tennant, Martin Porcelli and Scott Guess

Due to a multitude of legal restrictions and biases, many persons living with pain who take opioid medication can’t get enough relief to function, be comfortable, and have quality of life.

Summarized below are some of the ways we have found to boost or enhance the pain-relieving effect of prescription opioids.

Take a Booster (Potentiator)

Opioids trigger the endorphin receptor to relieve pain. If you simultaneously take a medicine or supplement that triggers a different receptor or suppresses inflammation, pain relief is enhanced. This boosting effect is the reason opioids are combined with acetaminophen or aspirin in pain medications such as Vicodin or Percocet.

Here is a list of potential non-prescription boosters. You may have to experiment to find one or two that boost the potency of your opioid. You can swallow the booster with your oral opioid or take the booster within 15 minutes after taking the opioid.

• Taurine 1000 mg

• Glutamine 1000 mg

• Lion’s Mane mushrooms

• Quercetin

• Benadryl

• St. John’s wort

• White willow bark

• Cannabidiol (CBD)

• Kava

• Palmitoylethanolamide (PEA) 300 to 600 mg

Under the Tongue vs Swallowing

A medication dissolved under the tongue (sublingually) is always more potent than if you swallow it whole. That’s because digestion in the stomach and intestines may wipe out as much as 50% of an oral opioid’s pain relief capability.

Try dissolving an opioid tablet under your tongue. You may find it much more effective, as it will enter the bloodstream faster. We recommend starting with half your usual dose and increase it as needed, being careful not to exceed your usual dose. Discuss this practice with your medical practitioner.

Don’t Forget Aspirin

Aspirin has been disparaged to the point that people are afraid to take it. It is still one of the very best opioid boosters. Dissolve it under your tongue to avoid stomach upset or bleeding.

Receptor Health

The central nervous system has many receptors (“action points”) that relieve pain. They need to stay healthy and active to provide maximal pain relief. A good nutrition program that consists of daily protein, vitamin D, and magnesium helps keep nerve receptors healthy and maximizes opioid pain relief.

Bedtime Preparation

Some medicinals taken at bedtime have the effect of making the next day’s opioids more effective. Here are some suggestions:

• Metformin 500 mg + L-Theanine 200 mg

• Tryptophan 500 to 1000 mg

• Amitriptyline

• Pentoxifylline

Cannabis

Some persons find that cannabis provides significant pain relief, while others experience little or no relief.

Do not take cannabis products within four hours before or after an opioid dosage to avoid over-sedation, loss of coordination, and mental deficiency.

Kratom

Kratom is the only non-prescription herbal supplement that has opioid-like effects. It comes in a variety of forms, usually natural leaf powder that is sold in capsules, edibles or drinks.

Kratom can be simultaneously taken with opioids, but be wary of synthetic or concentrated kratom as its potency may be unknown or too high.

All persons who take opioids for pain relief should find a kratom form and dosage that relieves pain. Given today’s adverse attitudes and restrictions on opioids, a person relying on prescription opioids alone must face the fact that their medical practitioners may end or reduce their opioid therapy at any time. When this happens, you may have to rely on kratom.

Prescription Boosters

Many physicians prescribe non-opioid medications for pain relief, such as gabapentin (Neurontin), clonidine, tizanidine, baclofen, and pregabalin (Lyrica). These can also be used to boost the potency of opioids. Take these medications within four hours before or after your opioid dose.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.

Martin J. Porcelli, DO, is a family medicine doctor in Pomona, CA and is affiliated with Casa Colina Hospital.

Scott Guess, PharmD, operates an independent pharmacy and clinic in Atascadero, CA that specializes in pain management and arachnoiditis.

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

7 Tips to Help Fight a Health Insurance Denial

By Lauren Sausser, KFF Health News

When Sally Nix found out that her health insurance company wouldn’t pay for an expensive, doctor-recommended treatment to ease her neurological pain, she prepared for battle.

It took years, a chain of conflicting decisions, and a health insurer switch before she finally won approval. She started treatment in January and now channels time and energy into helping other patients fight denials.

“One of the things I tell people when they come to me is: ‘Don’t panic. This isn’t a final no,’” said Nix, 55, of Statesville, North Carolina.

To control costs, nearly all health insurers use a system called prior authorization, which requires patients or their providers to seek approval before they can get certain procedures, tests, and prescriptions.

Denials can be appealed, but nearly half of insured adults who received a prior authorization denial in the past two years reported the appeals process was either somewhat or very difficult, according to a July poll published by KFF, a health information nonprofit that includes KFF Health News.

“It’s overwhelming by design,” because insurers know confusion and fatigue cause people to give up, Nix said. “That’s exactly what they want you to do.”

The good news is you don’t have to be an insurance expert to get results, she said. “You just need to know how to push back.”

Here are tips to consider when faced with a prior authorization denial:

1. Know your insurance plan

Do you have insurance through your job? A plan purchased through healthcare.gov? Medicare? Medicare Advantage? Medicaid?

These distinctions can be confusing, but they matter a great deal. Different categories of health insurance are governed by different agencies and are therefore subject to different prior authorization rules.

For example, federal marketplace plans, as well as Medicare and Medicare Advantage plans, are regulated by the U.S. Department of Health and Human Services. Employer-sponsored plans are regulated by the Department of Labor. Medicaid plans, administered by state agencies, are subject to both state and federal rules.

Learn the language specific to your policy. Health insurance companies do not apply prior authorization requirements uniformly across all plans. Read your policy closely to make sure your insurer is following its own rules, as well as regulations set by the state and federal government.

2. Work with your provider to appeal

Kathleen Lavanchy, who retired in 2024 from a job at an inpatient rehabilitation hospital in the Philadelphia area, spent much of her career communicating with health insurance companies on behalf of patients.

Before you contact your health insurer, call your provider, Lavanchy said, and ask to speak to a medical care manager or someone in the office who handles prior authorization appeals.

The good news is that your doctor’s office may already be working on an appeal.

Medical staffers can act as “your voice,” Nix said. “They know all the language.”

You or your provider can request a “peer-to-peer” review during the appeals process, which allows your doctor to discuss your case over the phone with a medical professional who works for the insurance company.

3. Be organized

Many hospitals and doctors use a system called MyChart to organize medical records, test results, and communications so that they are easily accessible. Similarly, patients should keep track of all materials related to an insurance appeal — records of phone calls, emails, snail mail, and in-app messages.

Everything should be organized, either digitally or on paper, so that it can be easily referenced, Nix said. At one point, she said, her own records proved that her insurance company had given conflicting information. The records were “the thing that saved me,” she said.

“Keep an amazing paper trail,” she said. “Every call, every letter, every name.”

Linda Jorgensen, executive director of the Special Needs Resource Project, a nonprofit offering online resources for patients with disabilities and their families, has advised patients who are fighting a denial to specifically keep paper copies of everything.

“If it isn’t on paper, it didn’t happen,” she said.

Jorgensen, who serves as a caregiver to an adult daughter with special needs, created a free form you can print to help guide you when taking notes during phone calls with your insurance company. She advised asking the insurance representative for a “ticket number” and their name before proceeding with the conversation.

4. Appeal as soon as possible

The silver lining is that most denials, if appealed, are overturned.

Medicare Advantage data published by KFF in January found that nearly 82% of prior authorization denials from 2019 through 2023 were partially or fully overturned upon appeal.

But the clock is ticking. Most health plans give you only six months to appeal the decision, according to rules laid out in the Affordable Care Act.

“Don’t dillydally,” Jorgensen advised, especially if you’re sending a paper appeal, or any supporting documents, through the U.S. Postal Service. She recommends filing quickly, and at least four weeks before the deadline.

For the sake of speed, some people are turning to artificial intelligence for help crafting customizable appeal letters.

5. Ask your HR department for help

If you get your health insurance through an employer, there’s a good chance your health plan is “self-funded” or “self-insured.” That means your employer contracts with a health insurance company to administer benefits, but your employer shoulders the cost of your care.

Why does that matter? Under self-funded plans, decisions about what is or isn’t covered ultimately rest with your employer.

Let’s say, for example, your doctor has recommended that you undergo surgery, and your insurer has denied prior authorization for it, deeming the procedure “not medically necessary,” a phrase commonly used. If your plan is self-funded, you can appeal to the human resources department at your job, because your employer is on the hook for your health care costs — not the insurer.

Of course, there’s no guarantee your employer will agree to pay. But, at the very least, it’s worth reaching out for help.

6. Find an advocate

Many states operate free consumer assistance programs, available by phone or email, which can help you file an appeal. They can explain your benefits and may intervene if your insurance company isn’t complying with requirements.

Beyond that, some nonprofit advocacy groups, such as the Patient Advocate Foundation, might help. On the foundation’s website is guidance about what to include in an appeal letter. For those battling severe disease, foundation staffers can work with you one-on-one to fight a denial.

7. Make noise

We’ve written about this before. Sometimes, when patients and doctors shame insurers online, denials get overturned.

The same holds when patients contact lawmakers. State laws regulate some categories of health insurance, and when it comes to setting policy, state lawmakers have the power to hold insurance companies accountable.

Reaching out to your legislator isn’t guaranteed to work, but it might be worth a shot.

Finally, if you’re interested in sharing your experiences with a journalist, fill out this form. We’d like to hear from you.

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

How Well Does Your Doctor Listen?

By Carol Levy

In addition to my trigeminal neuralgia, I also have many side effects from various surgical procedures. It’s bad enough that trigeminal neuralgia is considered a “rare” disorder, but mine is from an even more rare birth defect. Add to that facial paralysis and phantom pain, and I am a very rare duck indeed.

My cornea specialist acknowledged this recently, when I asked him about an issue with my eye.

“Most patients do fine. But there's no one else like you. So with you, I just don't know,” he said.

It’s been years since I’ve had trigeminal neuralgia “tics.” The trigeminal nerve was cut and burned surgically to stop the “tics” from occurring. But lately I've been getting new facial pain, so I asked my neurologist if the nerve could be growing back.

She shrugged her shoulders and said, “I don’t know.”

I appreciate it when a doctor is honest. They don't like to admit or show uncertainty. After all, they're the experts. They need to be able to give an answer to the question that often haunts us and sends us to them in the first place: “What is this?”

To say “I don't know” is probably very difficult for them.

Unfortunately, for many of us, instead of an honest answer, we get pats on the head and platitudes: “It's anxiety. Calm down and relax. Your pain will get better.”

Sometimes we get disbelief: “I don't believe you have pain. Your story isn't right.”

Some basically tell us to go away and not bother them anymore.

And then doctors wonder why patients have lost trust in them.

Patients complain rightfully when a doctor spends most of the appointment on the phone or looking at their laptops. Sometimes, if they bother to look up, they’ll say, “I'm looking into a medication I think may help.” 

Okay, that's good. He's researching so he can prescribe the right thing. But couldn't he have said something before he turns to his phone?

“I need to do some research,” the doctor could say. “I want to be sure I have the right diagnosis and prescribe the right drug. I can call you or see you again if necessary.”

I might be annoyed by that. After all, I'm leaving the office with no diagnosis or prescription. But it's preferable to the wrong diagnosis or the wrong medication. Waiting for the phone call or going back to the office to get what I need is preferable to being treated for the wrong thing or with a medication that doesn't work.

But it doesn't negate the feeling that "he never looked at me."

This has gotten worse in the digital age. They don't look at us, they are often more focused on the computer. Supposedly that helps them take notes and write a thorough report as they conduct an exam. But how many times have you seen the report? Is it rife with errors, things you never said, or exams never done?

I have read a number of articles that put the blame for this on the insurance companies. They require all health records to be stored electronically (EHR), so a doctor has to look at his computer.

But, having to comply with that requirement does not impose an inability to look your patient in the eye, to show interest, empathy and caring. That is not the insurance company's mandate. That should be the mandate for good doctoring

I’ve also seen articles where the blame is placed on the media. They only report on the bad doctors, never the good ones.

I have never imagined my doctor wearing a magical cape or having phantasmagorical powers. I could care less what the media shows. I only care about my doctors and how honest they are with me.

Sadly, too many of them are encased in an armor that pushes us away, that makes us distrust them. It’s the turnabout of the old breakup adage: It's not me, it's you.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 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.  

Awake, Not Woke: How Politics in Medicine Harms Patients

By Dr. Lynn Webster

Somewhere between facts and social media, “woke” -- a perfectly good word for being awake to reality -- got transmogrified into a slur. If that alchemy puzzles you too, consider this brief field manual for the Anti-Alarm-Clock Caucus: a how-to on mistaking earplugs for policy and empathy for extremism.

Culture-war rhetoric chills evidence-based care and worsens outcomes. Let me explain what we should do instead. 

If you’ve ever sat with someone who was in real pain, you know how brittle the anti-woke script sounds in exam rooms. Patient-centered conversation becomes suspect; motivational interviewing gets mocked as coddling; and a clinician trying to tailor a taper to a patient’s specific needs is accused of ideology.

The risk isn’t a bruised ego -- it’s disengagement. People clamp down, under-report substance use, skip follow-ups, and show up again only when they’re much sicker.

The irony is stark: even the critics who rail at “woke medicine” still rely on the public health infrastructure they deride when it’s time to manage the fallout.

Here’s the magic trick they perform: They rebrand attentiveness as excess and turn “be aware of harm” into “behold the woke mind virus.” Once they frame awareness as contagion, politicians can sell indignation like energy drinks. Any medical practice that looks like it’s noticing the individuality of a patient -- bias training, person-first language, or trauma-informed care -- gets dismissed as ideology, rather than craft.

Because they like to think of themselves as honorable, they follow a set of prescribed rules including:

Rule #1: Relabel Compassion as “Coercion”

When a clinic swaps “addict” for “person with a substance use disorder” because it reduces stigma and improves engagement, they accuse the “word police” of forcing the change in nomenclature. Opposing any sign of empathy requires less energy than reading the literature and seems far more satisfying than measuring outcomes.

If they made the effort, they would know that the National Institute on Drug Abuse (NIDA) advises using person‑first, non‑stigmatizing language -- e.g., “person with a substance use disorder” rather than “addict” -- to reduce bias in clinical care.  

In fact, in the International Journal of Drug Policy, John Kelly and Cassandra Westerhoff reported that the term “substance abuser” prompts more punitive judgments against the patient, even when trained mental health professionals are involved.

Rule #2: Recode Lifesaving Tools as Culture War

Naloxone, syringe services, and overdose prevention centers are tedious in one way: they work. So, label them “woke enabling” and starve them of funding. It saves leaders from saying the quiet part out loud -- “I oppose what works” -- while ensuring the body count stays offstage.

The CDC reports that Syringe Services Programs (SSPs) are “safe, effective, and cost-saving” and “do not increase illegal drug use or crime.” Access to and disposal of sterile syringes that won’t be reused is associated with a 50% reduction in HIV/HCV incidence. The reduction exceeds two‑thirds when combined with medications for OUD. HHS adds that harm reduction is “critical to keeping people who use drugs alive.”

In Massachusetts, communities implementing overdose education and nasal naloxone distribution (OEND) programs saw a 27% lower opioid overdose death rate at modest program scale and a 46% lower death rate at higher scale compared to communities without OEND.

Rule #3: Flatten Complexity Into Blame

Fentanyl potency, housing collapse, and workforce shortages are complex, unglamorous problems. “Woke drug policy failed” fits easier on a bumper sticker.

When Oregon struggled amid a fentanyl wave, the vibe merchants -- outrage marketers who sell mood over evidence -- declared drug decriminalization to be the villain.

But nuance seldom survives a fact check. The best evidence to date is that Oregon’s decriminalization of small amounts of drugs in 2020 was not associated with an increase in fatal overdoses after accounting for fentanyl’s spread. Oregon later recriminalized possession in 2024, even though state health officials reported a 22% decrease in overdose deaths in the prior year.

On the street, cruel rhetoric cues policy. Call overdose prevention centers “ideological” and it becomes simpler to shutter them than to count the lives they save. Smear syringe services as permissive, and you can cut programs that prevent HIV and hepatitis C, while claiming fiscal prudence.

Mock “harm-reduction spending” and you can bury the line item without ever debating the outcomes. From 2019 to 2022, New York City’s Opioid Prevention Centers (OPCs) resulted in no significant increases in violent or property crime, 911 calls, or 311 calls for drug use after opening.

Similarly, Vancouver, Canada reported a 35% reduction in overdose mortality rates after the opening of North America’s first supervised injecting facility.

Inside healthcare systems, the anti-woke script causes harm. Clinicians already practicing under surveillance and time pressures learn to avoid nuance with patients, resulting in less motivational interviewing, fewer shared decisions, and more default suspicion. The clinical vocabulary hardens, and patients pick up on it the way they would the weather.

When language gets sharper, so do consequences -- patients disclose less, absorb less, and leave treatment sooner. NIDA’s guidance exists precisely to counter those effects.

The Anti-Theatrical Fix: What Actually Works

The fix is simple. The antidote to anti-woke drama is being awake.

Call things what they are: naloxone reverses overdoses, syringe programs prevent infections, and supervised drug consumption reduces death and connects people to care. That’s not a worldview, it’s reality.

Use words that keep doors open instead of closing them. Person-first language is stigma hygiene, not a lifestyle brand. Judge policies by outcomes and timelines rather than outrage cycles. If the curve bends where capacity expands and supply is stabilized, then fund capacity and stabilize supply.

Retire spin peddlers as culture-war props. Federal judges noted that an anti-woke law in Florida crossed constitutional lines, ruling that “viewpoint discrimination is inherent in the design and structure of this Act.”

We could even try a fascinating (or, perhaps, boring to some) experiment in courage: let leaders earn applause for actions that quietly work, instead of things that loudly sting. Pay clinicians for patient-reported function, not for performing moral panic. Reward programs that shrink infections and deaths, not those that inflate arrest numbers. And when someone tries to sell you an anti-woke policy branded as “toughness,” ask to see the data, the denominator, and the deaths averted.

If you need a slogan, Gov. Ron DeSantis already gave you one and it just proves the point: “We will never surrender to the woke mob. Florida is where woke goes to die.”

None of this requires everyone to be “woke” or to join a mob. It requires us to be awake. The linguistic jujitsu that turned woke into a boo-word lets leaders score easy points, while patients lose hard chances.

You can see the toll in the quiet statistics, but you can also hear it in the voices that don’t come back, including the patient who won’t return after being called an unkind name; the parent who stops carrying naloxone because a lawmaker sneered at “harm-reduction spending”; and the person who overdoses in a locked bathroom because a supervised site was branded as “ideology.”

Be awake to patients and outcomes; let data, not drama, guide healthcare.

Lynn R. Webster, MD, is a pain and addiction medicine specialist and serves as Executive Vice President of Scientific Affairs at Dr. Vince Clinical Research, where he consults with pharmaceutical companies. He is the author of the forthcoming book, “Deconstructing Toxic Narratives–Data, Disparities, and a New Path Forward in the Opioid Crisis,” to be published by Springer Nature. Dr. Webster is not a member of any political or religious organization.

What Having Chronic Pain Teaches You About Doctors

By Crystal Lindell

There’s an old story often shared in my family about my great uncle Jim. It’s a story I’ve heard since I was a kid, as a warning. 

You see, when Jim was 39 years old, he was told to take “heart medication.” 

But Jim felt fine, so he ignored the doctor’s orders and never took the pills. And then, one night, while his wife – my aunt Sylvia – was watching TV, Jim went upstairs, fell asleep and died. He never even made it to his 40th birthday. 

I never met Jim, but his early and unexpected death sent shock waves through generations of my family. And his story eventually morphed into family folklore, where the moral was that if a doctor gives you medication, you need to take it. 

It is with this mindset that I first approached my doctor appointments back in 2013 when I developed chronic pain in my right ribs. 

I didn’t know the cause – and to be honest, I still don’t really know for sure how it started – but I did know that I was in a lot of pain, and I was very scared. 

So when the doctors started loading me up with prescriptions, I filled every single one of them. Within a couple months, I had a line of pill bottles and patches on my nightstand spanning everything from gabapentin and amitriptyline to lidocaine and other medications I can’t even remember now. 

And I took all of them exactly as prescribed. 

The only problem was, the lessons of the past did not apply to my situation. The medications were prescribed by a team of doctors who were just throwing stuff at the wall to see if anything would stick. 

Taking them in combination caused horrible side effects. I was always on the verge of falling asleep, and I started gaining weight so fast that my clothes would stop fitting in the span of a week. 

Not to mention the fact that they also weren’t even doing the one thing I needed: None of them were helping my chronic pain. 

It wasn’t until I eventually went to the Mayo Clinic about a year later that I realized the flaws in my logic.

It was there that a doctor told me to just stop taking half the medications I was on. When I questioned her, she was shocked that I had not thought to stop any of them sooner. 

It sounds naive in retrospect, but that was the first time I started to realize that doctors were not gods. And that doctors are sometimes guessing when it comes to treatments.

It was a lot to process, because it also meant that I had to reckon with the fact that I could no longer just blindly follow whatever treatment they were giving me. Rather, I was going to have to figure out a lot of this for myself. 

There’s a common myth that if you ever get sick, a doctor will save you. But when you develop any sort of chronic health condition, you realize that doctors are just humans too. They come into appointments with prejudices, egos, bias, and flawed information. They also often disagree with other doctors.

This can be extremely difficult to navigate because when it comes to your health, a lot of treatments really are about life or death. And filtering out which ones are life and which ones might be death is dangerous business. Doctors are definitely needed to guide us, but they can’t be relied upon to do it alone. 

There’s an old saying about doctors: “There’s a reason they call it a practice.” Even doctors are still learning about the complexity of our bodies. Because as I said, they are not gods, and as such, they can’t be relied upon to be our saviors. 

In the end, we have to save ourselves. 

It’s not quite as comforting to see the world that way, with the knowledge that nobody is coming to save us. But it’s more realistic. And a lot more likely to actually save you. 

Rising Health Insurance Costs Should Cause Americans More Alarm

By Elisabeth Rosenthal, KFF Health News

Wary of inflation, Americans have been watching the prices of everyday items such as eggs and gasoline. A less-noticed expense should cause greater alarm: rising premiums for health insurance. They have been trending upward for years and are now rising faster than ever.

Consider that, from 2000 to 2020, egg prices fluctuated between just under $1 and about $3 a dozen; they reached $6.23 in March but then fell to $3.78 in June. Average gas prices, after seesawing between $2 and $4 a gallon for more than a decade starting in 2005, peaked at $4.93 in 2022 and recently fell back to just over $3.

Meanwhile, since 1999, health insurance premiums for people with employer-provided coverage have more than quadrupled. From 2023 to 2024 alone, they rose more than 6% for both individuals and family coverage — a steeper increase than that of wages and overall inflation.

For many people who have the kind of insurance plans created by the Affordable Care Act (because they work for small companies or insure themselves), rates have probably risen even more drastically. In this market, state regulators scrutinize insurers’ proposed rate increases, but only if they exceed 15%.

And the situation is about to get worse: For 2026, ACA marketplace insurers have proposed eye-popping new prices: In New York, UnitedHealthcare has proposed a 66.4% rise. HMO Colorado has asked for an average increase of more than 33% in that state. In Washington, the average proposed increase across all insurers is 21.2%, and in Rhode Island it’s 23.7%.

According to Business Group on Health, a consortium of major employers, “actual health care costs have grown a cumulative 50% since 2017.” In a separate survey published in 2021, 87% of companies said that in the next five to 10 years, the cost of providing health insurance for their workers would become “unsustainable.”

And insurers in the ACA marketplace are increasing premiums by an average of 20% for next year, according to a new analysis. Imagine if tens of millions of Americans’ rent or mortgage payments were to suddenly increase by that amount.

Insurance regulators theoretically could demand that these proposed rates be lowered — and this often happens. But some states are more active than others in this regard. And all are wary that too much regulatory interference could drive insurers from their markets.

Insurers offer many explanations for their calculations, some of which are tied to recent actions by Congress and President Donald Trump. New tariffs on America’s trading partners, for example, are expected to push up the cost of drugs and medical supplies.

Meanwhile, reductions in health care spending included in the GOP budget bill, along with the expiration of some Biden-era premium subsidies at the end of this year, will cause many people to lose their health insurance. About 16 million Americans are expected to become uninsured by 2034, in many cases because keeping insurance will become unaffordable.

Because most of these people are likely to be young and/or healthy, the “risk pool” of those remaining insured will become older and sicker — and therefore more expensive to cover.

“Ultimately, we believe the ACA market will likely be smaller and higher acuity-driven next year,” Janey Kiryluik, vice president of corporate communications for Elevance Health (formerly known as Anthem), wrote in an email. She added: “Our position reflects early disciplined action.”

Remember, most insurers in the United States are public, for-profit companies; as such, they tend to act in the interests of their shareholders, not the patients whose health care they cover.

Large employers that manage their own health care plans might be able to negotiate better deals for their workers. But smaller companies, for the most part, will need to accept what’s on offer.

Premiums are not the only part of health insurance that’s getting more expensive. Deductibles — the money that beneficiaries must spend out-of-pocket before insurance kicks in — are also rising. The average deductible for a standard ACA silver plan in 2025 was nearly $5,000, about double what it was in 2014. (For those with employer-based insurance, the average number is just under $2,000.)

A few states are trying to stem the tide by offering a state-run “public option,” a basic affordable insurance plan that patients can choose. But they have struggled because a lower payment rate for workers generally means fewer participating providers and reduced access to care.

If voters paid as much attention to the price of health insurance as they do to the cost of gas and eggs, maybe elected officials would respond with more action.

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

The Strange Denial of Complications Caused by Poorly Treated Pain

By Drs. Forest Tennant and Scott Guess

There has been no shortage of controversy, scandal and fraud regarding the opioid and pain crises of the past decade. One standout in the debate over opioids and pain treatment has been a lack of an honest, objective discussion of the benefits of pain care.

A basic tenet in medical practice and therapeutics is what is called the “risk-benefit” ratio. This is a simple analysis of whether a specific drug or therapeutic measure has more benefit than risk.

For example, the risk-benefit of drugs taken during pregnancy is well-known and established. But strangely, the debate over whether opioids have more benefit than risk in the treatment of pain has never been broached.

None of the parties involved, especially the anti-opioid zealots, will discuss any benefit that opioids may bring. In fact, essentially their only discussion is that opioids are a risk for overdose and addiction, so they have no benefit and shouldn’t be used.  

This risk is overrated and overstated in relation to opioids prescribed and monitored by a physician. According to the CDC, total opioid overdose deaths in the US (including deaths from illicit opioids) were 24 deaths per 100,000 population in 2023.

That compares to the overdose death rate for prescribed opioids, which was 4 per 100,000 population. That is a raw number for prescribed opioids.  Some data reports opioid deaths among physician monitored chronic pain patients to be as low at 0.1 per 100,000 population. 

In other words, the overdose risk of evidence with prescription opioid is minuscule.

Pain has a number of pathological complications that benefit from opioid therapy. In addition to physical relief, there are humanitarian benefits, such as a reduction in suffering, and the ability to mentally and physically function as a productive person.

When poorly treated or left untreated, chronic pain has profound negative and deleterious effects on the cardiovascular and endocrine (hormonal) systems. Pain puts the cardiovascular system into overdrive, which raises blood pressure and pulse rates. Coronary artery spasm may also result from severe chronic pain.

We can personally attest to prescribing blood pressure medication and nitroglycerin to many pain patients at risk of cardiac arrest or heart failure.

Hormonal suppression and deficiency of cortisol, testosterone, estradiol and other hormones are also common in undertreated chronic pain patients. Cortisol levels can drop below levels that sustain life. We have administered emergency cortisone to pain patients who were severely ill, debilitated, and near collapse because they had inadequate cortisol levels.

Among Dr. Thomas Addison’s eleven reported original cases of Addison’s Disease in 1855, about half had serious intractable pain conditions such as adhesive arachnoiditis.

Chronic pain has also been found to alter blood glucose and lipids (cholesterol). Sleep deprivation is another major problem in pain patients.  And anorexia with malnutrition is common.

Given the medical complications induced by pain, one would logically think that there would always be a discussion of risk-benefit when discussing opioid therapy. But we’ve never heard or seen such a discussion in medical literature or in political circles.

As if denial of benefits over risks weren’t bad enough, an even stranger denial has occurred. We have searched the major medical textbooks used in medical schools today, and couldn’t find a single word that chronic pain is a risk for hypertension and cardiac disease, much less hormonal deficiencies.

Isn’t it time we quit denying that chronic pain has medical complications that can be easily treated with opioids and other medicinals? The risks of opioid therapy simply don’t outweigh the benefits. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.   

Scott Guess, PharmD, operates an independent pharmacy and clinic in Atascadero, CA that specializes in pain management and arachnoiditis.

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

When Headlines Lie: Misleading News About Opioids and Chronic Pain

By Neen Monty

The headline in Physician’s Weekly screams alarm:

“Rising Use of Potent Opioids in Chronic Pain Management”

And then the sub heading:

“Long-term opioid use for chronic pain doubled, with potent opioids rising, underscoring the need for stronger guideline adoption”

Terrifying, right? We must do something!

But now, read the article. It’s based on a study recently published in the European Journal of Pain on the prevalence of long-term opioid therapy (LTOT) when treating patients with chronic non-cancer pain.

The Dutch study looked at opioid use over a ten-year period, from 2013 to 2022, using a large dataset drawn from primary care records in the Rotterdam region. This database covered more than half a million patients and included data from over 240 general practitioners.

The researchers focused on adults aged 18 and over who had been prescribed opioids continuously for at least three months. They tracked how common LTOT was over time, and also explored which diagnoses, co-existing conditions, and other medications were associated with it. They reported their findings using basic descriptive stats and calculated LTOT prevalence per 100 patient-years to show trends over the decade.

And what did they find?

“The prevalence of LTOT increased twofold from 0.54% (95% CI: 0.51–0.58) per 100 patient years in 2013 to 1.04% (95% CI: 1.00–1.07) in 2022. The proportion of LTOT episodes solely involving potent opioids slightly increased between 2013 and 2022”

In plain English, the prevalence of long-term opioid use by patients at the end of the study was just over 1%.

Yes, that’s right: 1%.

And the prevalence increased by just half a percentage point over a decade.

Hardly a crisis. Hardly anything to scream about.

But we can’t have that! We need a clickbait headline to demonize opioids and stop their prescribing! So, instead of reporting accurately on the very small increase in opioid prescribing, they focus on the “twofold” increase. Trying to manufacture a crisis where there is none.

It’s true, the prevalence of LTOT did double, from half a percent to one percent. And that’s what the headline highlighted, to try and make it sound like there is an opioid crisis in Europe. There is not.

This tactic is often used in presenting medical research – using relative percentages rather than the actual numbers. That is because relative percentages -- “Opioid Use Doubled!” -- sounds worse than “Opioid Use Increased by Half a Percent.”

It’s a trick that researchers and the media use all the time.

Why do this? It’s dishonest. It’s deceptive. And it destroys our trust in science. They are trying to manufacture a crisis when there is none.

Why not research and report an actual crisis? Instead of making one up?

The Physician’s Weekly headline exemplifies the worst of scientific spin: inflating tiny fractional changes and omitting context. It potentially harms patients by reinforcing the myth that opioids don’t work long term and should be withheld. That myth persists because of misleading reporting like this.

Finally! An Honest Headline

It was nice to see some accurate reporting in Scimex, an Australian online news portal that tries to help journalists cover science. Instead of the usual deceptive, sensationalist headlines, this one tells the truth:

“Pain Reprocessing Therapy (PRT) could help those with mild chronic back pain”

This was so refreshing to see! Because it’s so very, very rare.

Most reporting on PRT glosses over a critical point: It has only been studied in people with mild, non-specific back pain. An average of 4 on the zero-to-10 pain scale.

That nuance is often lost in the hype about alternative treatments like PRT, cognitive behavioral therapy, mindfulness and TENS.

You do not treat 8/10 back pain the same way you treat 4/10 back pain.

What happens when people are misled about PRT? It gets recommended to people with severe, pathological pain — often with clearly identifiable causes — and everyone acts surprised when it doesn’t work.

Let’s be clear:

• PRT is not for severe back pain

• PRT is not for pain caused by pathology

• PRT is not a cure-all

But you wouldn’t know that from most headlines about PRT, such as “New therapy aims to cure back pain without drugs, surgery” and “A New Way to Treat Back Pain.”

Then you read the small print: All the participants in PRT studies had non-specific back pain from an unknown cause. And they had mild pain.

The researchers are often complicit, cherry-picking and hyping their own data. Why? Because they need funding. Because they’re writing a book. Because professors have to "publish or perish" to keep their jobs. Because it’s easier to mislead the public than to admit a therapy has limits. And you don’t get to be a guru if your therapy only works for a minority of patients with mild pain.

This kind of spin harms people with severe chronic secondary pain. It feeds the narrative that if you're still in pain, then it’s your fault. You didn’t try hard enough. You’re catastrophizing. You need to retrain your brain.

It feeds the stigma that all chronic pain is mild and easily curable. And that anyone who says their pain is severe has psychological problems.

No. Maybe their pain is caused by pathology, like tissue damage or herniated discs. Maybe their pain is nociceptive or neuropathic.

This is why chronic pain patients must be included on every research team. Someone with real-world, high-impact chronic pain would never let this kind of misrepresentation slide. And the rest of the team wouldn’t be able to claim ignorance.

We need more honesty and integrity in research and the media. We need headlines that reflect the actual findings. We need conclusions that match the data, not some predetermined narrative. Right now, most media coverage doesn’t even try.

Read the study, then read the headline. They rarely match. That’s how we ended up with a generation of healthcare providers who think opioids are bad, all chronic pain is primary pain, and that PRT is some miracle therapy.

It’s not. PRT may be helpful to people who are depressed or have anxiety, but should not be a first-line treatment for everyone. It’s only been tested in people with mild back pain for which there is no known physical cause. It has not been shown to work for people with severe pain or structural pathology.

But the researchers usually gloss over that. And the headlines and conclusions rarely reflect those facts or spell out who PRT is for and who it is not for.

Because here’s the truth: Pain Reprocessing Therapy is not a treatment for chronic pain. It’s a treatment for anxiety and depression.

That’s the real headline.

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. She has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Does Having a Diagnosis Change How You Are Treated?

By Crystal Lindell

A few months after I got my first official diagnosis of Ehlers-Danlos syndrome in 2018, I had an appointment with a new orthopedic doctor. 

I was having really bad pain in my left shoulder that I injured while on crutches, which I was using as a result of a foot injury. It felt like I couldn’t catch a break. 

There was a new EDS diagnosis on my patient intake form, which I assumed would be relevant in one way or another. I turned in the form and was led back to a patient room to go over all my symptoms with the nurse, before being left to anxiously wait in an overly air conditioned exam room to meet the doctor. 

When he finally walked in, he didn’t bother to say hello. In fact, before he even introduced himself, he looked up from my patient intake form, scanned me up and down, and said in an accusatory tone, “So. What makes you think you have Ehlers-Danlos syndrome?”

The question caught me off guard. I didn’t “think” I had EDS. I had literally been diagnosed by another doctor in the same hospital system a few months prior.

“Um, well, I was diagnosed by a doctor who works here, and my mom has it, my brother has it, my uncle has it, and my cousin has it.”

“Oh,” he replied, before hastily trying to move on. But the tone had already been set. Instead of it being a meeting between patient and caregiver, it had shifted to a meeting between patient and accuser.

For many years, I had assumed that having an official medical diagnosis would change how doctors treated me. I spent five years blindly struggling with a chronic pain that had no name, desperately searching for a diagnosis or cause. 

If only I had the validation of some sort of official medical diagnosis, then finally they would have to take me seriously. Or so I thought. 

But here I was, getting a crash course in why that wasn’t going to be the case. 

It turns out that doctors who try to dismiss you pre-diagnosis will also try to dismiss you post-diagnosis. 

I also assumed that if I had a “real” diagnosis, my family, friends and professional contacts would be more willing to accept the pain that had been plaguing me for years. 

But alas, that was not the case either. Explaining to them that I had Ehlers-Danlos syndrome resulted in zero changes in their behavior either. 

What I did find is that people who empathized with my chronic pain pre-diagnosis also empathized with my pain post-diagnosis. 

It turns out, it was never about the diagnosis.The people who sneered, judged and dismissed me before I knew I had EDS, continued to sneer, judge and dismiss me after I knew I had EDS too. 

Where before they would try to blame their behavior on my lack of a diagnosis, they just found new reasons after I did have one. Their justifications turned to things like blaming my weight, calling me lazy, and lamenting that if I really wanted to get better, I would try more treatments and take fewer opioids. 

I understand the personal toll it can take to deal with health issues without a diagnosis. And knowing that I have EDS helped me find online support groups and helped me better navigate my medical care. So I do fully support continuing the search for answers if you’re undiagnosed. 

But as a patient who spent years in pain, both with and without a diagnosis, I’m unfortunately here to report that finally getting one probably won’t change how most doctors and loved ones treat you. 

Because how they treat you has never been based on you – it was always just a reflection of themselves.

What Is Legitimate Pain?

By Dr. Forest Tennant

The question posed by the headline of this article may at first seem ridiculous or unneeded. But a definition of “legitimate pain” is really needed.

Federal government regulations require physicians to get a DEA license to prescribe opioids and other controlled substances. The prescribing must be for a “legitimate medical purpose” -- which is obviously intended to mean legitimate pain. 

It may be surprising, but the federal government doesn’t have a definition for legitimate pain.  State medical boards throughout the United States also do not define legitimate pain, although they monitor physicians for the “legitimacy” of their treatments. 

Recent history has shown that many physicians have been investigated and prosecuted for prescribing opioids without a “legitimate medical purpose,” despite the fact that there is no written definition of legitimate pain to be found in medical regulations and guidelines.

The lack of a written definition of legitimate pain has allowed wide discretion and abuse by prosecutors and their hired medical consultants, making it difficult for doctors to defend themselves against a system that is seemingly rigged against them.

Government agencies, medical boards, professional groups, and insurance plans also call pain “illegitimate” if they don’t like the treatment, dosage, brand, doctor, or cost. 

As unbelievable as it may sound, I’ve read and heard some terribly biased and ignorant definitions of what is and isn’t legitimate pain. 

For example, I’ve heard that a simple need for opioids makes pain illegitimate. The new definition of pain, according to some physicians, is really “opioid use disorder,” which requires treatment for addiction. I’ve also read that pain is a character deficiency and a natural part of life that needs no treatment.

There are some well-meaning persons who claim that pain is whatever the patient says it is. Sorry patients, there are simply too many addicts prowling doctor’s offices with detailed, fraudulent claims of pain fabricated to obtain opioids. Common sense and science tell us to “find the cause of pain before you prescribe.”   

It’s hard to believe, but the International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience.”  I can’t wait to ask United Healthcare and Medicare to pay for an expensive drug with this definition.

It is important to point out that the term “legitimate pain” is not only lacking in regulatory guidelines, but it is also not found in medical dictionaries.  Pain may be an experience, emotion or sensation, but it has historically been regarded as a symptom of an underlying disease or injury. 

For example, the Dunglison’s Medical Dictionary of 1874 says “pain is generally symptomatic.”  Medical practitioners today, however, need a new definition of pain because the term “legitimate” is now used to justify treatment with opioids and other controlled drugs. 

Here is my definition of pain, which I believe will generally satisfy all parties, including patients, practitioners, governmental bodies, insurance companies, and the media:

“A stressful symptom caused by a disease or injury that can be objectively identified by diagnostic tests or physical examination.”  

In the past, an argument was made that some causes of pain, such as fibromyalgia and headaches, can’t be objectively verified.  This may have been true in the past, but today’s technological advances in medical imaging and laboratory tests, along with a detailed physical examination, can objectively determine the cause of nearly every source of pain. 

An examination of my submitted definition not only implies that a medical practitioner has the right to treat the patient, it also implies that the practitioner has an obligation to treat both the pain and the cause. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.   

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

Living With Chronic Pain Teaches You to Ignore the Haters

By Crystal Lindell

When I first started having chronic pain in 2013, one of the major hurdles I faced was that I suddenly had a lot of trouble handling my full-time job. Doing a 90 minute commute each way, managing stress, traveling for conferences – all of it became infinitely more difficult. 

A lot of bosses probably would have immediately started to look for ways to let me go at that point, but I was lucky enough to have one who didn’t. He was an incredible mentor, friend and advocate for me – both within the company and with third parties. 

In fact, I would often rave about him to others, bragging about how empathetic and compassionate he was about the whole situation. 

A few years later, my boss started to have really bad knee pain, to the point that he eventually needed a knee replacement. 

Before he could have the surgery though, we had to cover a week-long industry conference at an exhibition hall together, and the whole experience left him very drained. He was suddenly experiencing chronic pain. 

Near the end of the week our team was having dinner, and he leaned over to tell me something. 

“I’m sorry I was not more compassionate to you about your health problems. It’s so awful. I go to bed tired, I wake up tired. The pain is always there. It’s horrible. I should have been nicer,” he told me.

I was stunned. 

This was someone who I had always categorized as being among the most compassionate about my chronic pain. And here he was – now faced with it himself – feeling as though he should have been even nicer. 

I always point to that story when I talk about why I don’t take it personally when others judge how I manage my life with chronic pain. Until you’ve been through it, it’s really hard to truly understand what it’s like to live with it – and what you’d do to make it stop. 

Even the most compassionate people often find that they were not compassionate enough. That it’s worse than they previously understood. 

And most people are not compassionate. On the contrary,  over the years a lot of people have been really judgemental about my health choices. People love to offer unsolicited advice, talk behind my back, and make rude comments like these: 

“She just wants to get high all day.”

“If you really wanted to get better you’d take up running/yoga/pilates and lose weight.”

“How bad could it be? She’s just lazy.”

But one thing I’ve noticed repeatedly is that when life hands them a health problem of their own, they are quickly humbled. 

People who thought I wasn’t doing enough to get better suddenly feel overwhelmed by something as routine as an MRI.

People who thought I took too many pain pills suddenly ask me for tips on how to get their doctor to prescribe pain medication. 

People who sneered at my kratom use suddenly want a tutorial on how to use it. 

People who called me childish for advocating for universal health care suddenly realize that the health insurance industry doesn’t care if they live or die. 

And people who thought I wasn’t doing enough to further my career quit their jobs and stopped working altogether. 

To be honest, I get it. It’s really hard to conceptualize a life with chronic pain or any chronic health issue until it happens to you. And it’s easy to judge how someone else is handling it. 

So when they are humbled, I never say “I told you so.” Instead, I offer sympathy, and whatever advice they ask for. 

And I tell them the most important thing you can tell someone with chronic pain: You are not crazy, you are not alone, and you can still live a very fulfilling life regardless of your health issues. 

Before that happens though, before they are humbled, when they are still healthy and offering judgements, I do something else – I ignore them. Because I know that no matter what they say, they wouldn’t handle my chronic pain any better than I do. 

To quote one of the most famous song writers of our generation: 

“Haters gonna hate, hate, hate, hate, hate. Baby, I'm just gonna shake, shake, shake, shake, shake. I shake it off, I shake it off.”

A Pained Life: When Disaster Strikes

By Carol Levy

I am watching a TV show. A tornado hits the main character's house. Suddenly, her house and all her possessions are scattered everywhere, broken and crushed, her house virtually demolished.

I watch as she looks through the detritus, more and more frantic in an effort to find something – anything -- that wasn't broken or totally destroyed.

“How can you recover from something like that? She lost everything,” I thought to myself.

My eyes start to tear up, my stomach clutches. This feels familiar.

Then it hits me. Trigeminal neuralgia did the same thing to me.

People often try to comfort disaster victims with heartfelt, but meaningless cliches: "You have your health" or "At least you're safe.”

The same words were said to me about my pain, even the line about still having my health. Well, yes, trigeminal neuralgia only caused severe pain to my face. The rest of me was physically whole. But was I healthy? No.

“There's always a chance they'll find something to help you,” was something else I heard -- even after 14 brain surgeries, including one that was 100% experimental. I have tried all there is to try. My neurosurgeon made that very clear to me.

This all started when I was 26, just beginning life. 

I wanted to be a singer.  The year before the pain began, I was in two musicals. It was in the lowest rung of professional theater, but it was what I wanted to do. The pay was less than what it cost me for the gas I used to get to the theater, but a paycheck is a paycheck.

With all my hopes and dreams of becoming a professional singer, and two whole shows on my resume, I packed my bags and moved to New York City, like so many other young people with the same dream.

For most of the first 6 months, I had a job as a receptionist. My boss promised me time off for auditions and classes. I was living my dream, holding the hope and fantasy of success in my hand.

Then, out of the blue, the pain started. Constant, spontaneous and triggered. Just a light touch from a wisp of hair could set it off. I didn’t know when the spontaneous pain would come, and had no control over the constant pain.

Soon, it affected my left eye. Any bright light or use of my eye caused breathtaking pain. The rest of me was fine, but I was now 100% disabled by pain.

It kept me virtually housebound, going out only for groceries, doctor's appointments, and the pharmacy. I stayed in as much as I could. Either the pain was so great I couldn't go out, or the fear of it being triggered kept me its prisoner.

Most of us are fine one minute, then wham, the pain strikes.

Our pain is like a tornado. For some, it comes on suddenly like a whirling dervish. For others, like the buildup to a tornado, it slowly gathers strength before demolishing who we were, what we had, and what we wanted to be. 

The pain took so much from me. The hopes and dreams I had before the pain were turned into rubble, yet I couldn’t let them go.

After a tornado the Red Cross comes in, neighbors and churches offer help.

But I find that isn't the case when it comes to chronic pain. Instead, people tend to look away or mouth platitudes, all while pretending our lives haven't been devastated.

I have had the pain for over 40 years. I still don't accept it. I keep looking for the life I expected to have.  It's never there.

Ultimately, the TV character finds one of her treasured belongings in the wreckage of her home.  She is ecstatic and relieved.  She suddenly sees the rest of the damage as merely a chore she has to deal with.

Maybe, just maybe, one day I can do the same.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 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.