Rx Opioids Are Not a Cure… and Neither Is Anything Else

By Neen Monty

They deliver it like it’s some kind of mic drop.

“Opioids are not a cure,” they say.

But here’s the important thing: Almost nothing in medicine is a cure.

Insulin doesn’t cure diabetes. But it keeps people alive.

Methotrexate and Xeljanz don’t cure rheumatoid arthritis. They slow down disease progression though.

Intravenous immunoglobulin is not a cure for Chronic Inflammatory Demyelinating Polyneuropathy. But it slows down the demyelination of my nerves.

Prednisone is not a cure for autoimmune disease. But it reduces inflammation, which improves pain and quality of life.

Anti-inflammatories do not cure inflammatory arthritis, but they decrease pain, increase function and improve quality of life.

Metformin, thyroxine, even chemotherapy in many cases… none are cures.

They manage symptoms, reduce harm, and improve quality of life.

That’s medicine’s job.

Medicine is not purely about curing disease. In fact, it’s rarely about curing disease. That does not mean that all the wonderful things that medicine can do are worthless.

So why is pain relief held to a higher standard than every other kind of treatment?

Why are opioids dismissed simply because they don’t cure the underlying disease that causes the pain?

Pain relief is not a moral failing. It’s medicine doing what it’s meant to do: Alleviate suffering and restore function.

That’s what opioids do. Alleviate suffering, restore function and improve quality of life. Those are good things.

If you can move again, sleep again, think clearly again, participate in life again, isn’t that a good thing?

But no. Dismiss opioids because they’re not a cure.

Such a stupid point of view.

Now that we’ve shown that chronic pain patients hardly ever become addicted or overdose on their pain medication, people are really reaching for reasons to demonize opioids. Saying that opioids are not a cure is reaching pretty hard.

Opioids reduce pain temporarily. I am under no illusions. And I do wish there was a cure for my diseases. I really do. But there is no cure. There is only palliative treatment -- with opioids.

And so many people would like to take that pain relief away from me. People who have never experienced severe pain at 1am. So severe that sleep is impossible. So constant that it happens every night. And all day, every day.

Except for the few hours when I have pain medication to reduce that pain – while not curing it.

Opioids don’t cure pain any more than insulin cures diabetes. They treat a symptom. A devastating symptom – severe pain - that profoundly affects function and quality of life.

Reducing that pain, even temporarily, is not a failure.

That’s a treatment working.

It’s the best treatment we’ve got for severe pain, acute or chronic.

To say “opioids are not a cure” is to fundamentally misunderstand what they’re for.

You know, those glasses you wear won’t cure your shortsightedness. Let’s take your glasses away. They’re not a cure!

That wheelchair won’t cure paralysis. You don’t need a wheelchair.

We don’t apply this logic to any other condition or treatment. Only pain. Only opioids.

We don’t tell people with heart failure to throw away their meds because they don’t “fix” the heart.

We don’t tell people with asthma to stop their inhalers because they don’t “cure” the lungs.

We treat to relieve symptoms, to restore life and dignity, because that’s the ethical duty of medicine.

Relief of suffering is an outcome. Improved function is an outcome. But a cure is wishful thinking.

So the next time someone says, “Opioids are not a cure,” remember that neither is anything else we use to keep people alive, moving, and human.

And that’s okay. Because that’s the best we can do, in many situations.

Because the goal of medicine isn’t always to cure. It’s to care.

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.”

Tramadol Revisited: Some Patients Say It Helps Relieve Pain

By Pat Anson

A recent study that found tramadol was only slightly effective in relieving chronic pain – but not worth the side effects – is stirring some debate.

The Danish study analyzed findings from 19 clinical trials of tramadol involving over 6,500 patients, and found that the synthetic opioid was not only ineffective for many patients, it may raise the risk of heart disease and perhaps even cancer.

“The potential harms associated with tramadol use for pain management likely outweigh its limited benefits,” researchers reported in the journal BMJ Evidence Based Medicine.

That conclusion is being disputed by John Bumpus, PhD, a Professor of Chemistry and Biochemistry at the University of Northern Iowa.

“In my view, the authors’ analysis and evidence base are far too sparse and fragile to justify the conclusion that harms likely outweigh benefits. Their claims appear overstated and are not supported by the biomedical literature and the underlying data,” Bumpus told PNN.

Bumpus reviewed several studies on his own, including one that found a high dose of tramadol provided “good” pain relief to 74% of cancer patients. The same study found tramadol “satisfactory” for 10% of cancer patients and “inadequate” for about 16% of them.

That wide variability in response, according to Bumpus, is likely due to the individual metabolism of each patient. The effectiveness of tramadol depends on whether they have variations in a gene (CYP2D6) that helps convert tramadol to a metabolite that binds to mu opioid receptors in the brain, resulting in pain relief. 

Another study estimated that 0.5–6.5% of patients are “poor metabolizers” of tramadol, 10–44% are “intermediate metabolizers” and only 43–67% are “normal metabolizers.” Poor and intermediate metabolizers are likely to experience little pain relief from tramadol.

‘It’s the Only Thing That’s Working’

Over the years, many PNN readers have told us tramadol didn’t give them any pain relief. But some say it works for a wide variety of pain conditions.

“I am one who receives adequate pain relief from tramadol. It's all I took, besides ibuprofen, when my pain was being treated, and it was especially effective if I took half a dose on top of regular dose of ibuprofen. After surgery, I took a whole dose of tramadol as prescribed, with adequate pain relief,” one reader said.

“I have autoimmune arthritis and take tramadol so that I can numb the pain to be able to sleep,” another reader wrote.

“It’s the only thing that’s working for my pain. Hydrocodone didn’t even touch it. Oxycodone works only if I add tramadol,” another pain patient told us.

“It does help cut the pain down for me quite a bit. Does it take it all away? No it does not. And some types of pain it doesn’t even touch,” said a woman with arthritis, fibromyalgia and degenerative disc disease. “My sleep has improved quite a bit also since being back on it. But you have to keep it in your system for it to help. You can’t really take it just whenever.”

“It most definitely takes the edge off of my peripheral neuropathy. I have a neurostimulator implant too, but by the end of the day my pain is worse and that’s when I take tramadol,” another patient wrote.

If tramadol is only effective in about half of patients, should it be used at all? Bumpus says it should. Just because tramadol is a “weaker” opioid doesn’t make worthless.

“Tramadol’s analgesic potency is approximately one-tenth that of morphine. Interestingly, this is one reason it is often prescribed first, consistent with the principle of using the lowest effective opioid dose,” Bumpus said.

“For patients whose pain is not adequately controlled, stronger opioids (e.g., oxycodone, hydrocodone) or combination agents (e.g., acetaminophen/oxycodone 325/5 mg) may be appropriate. Thus, for patients who do not respond to tramadol, the remedy is straightforward. They should consult their healthcare provider and consider another medication or alternative therapy.”

That may not be an option for some patients, who have doctors that are only willing to prescribed tramadol and other less risky opioids. The DEA classifies tramadol as a Schedule IV controlled substance in the United States, meaning it has “a low potential for abuse.” Oxycodone and hydrocodone, on the other hand, are Schedule II drugs, meaning they have a “high potential for abuse.”

Bumpus also disputes the notion that tramadol raises the risk of heart problems, pointing out that coronary heart disease (0.45%) and chest pain (0.32%) occurred in less than one percent of patients on tramadol, which is not considered a statistically significant risk.

“The claim… that tramadol’s potential harms outweigh its benefits is not supported by the numerical data presented. Across thirteen clinical trials, tramadol was consistently found to be an effective and generally safe analgesic for chronic pain,” Bumpus said. “Taken together, the available evidence supports tramadol as a reasonable option for appropriately selected patients, provided it is used with good clinical judgment and proper monitoring.”

Although tramadol is the only opioid that some doctors will prescribe for pain, its use is actually declining in the United States. In 2023, over 16 million prescriptions were written for tramadol, down from 25 million a decade earlier.

Magic Mushrooms May Relieve Chronic Pain and Depression

By Crystal Lindell

A new study shows that psilocybin, the active ingredient in what’s colloquially called magic mushrooms, could help relieve chronic pain and depression by targeting specific parts of the brain — at least in mice.

Psilocybin is a naturally occurring alkaloid with psychoactive properties that’s been used for pain relief for thousands of years. In the United States, however, it is classified as an illegal Schedule One controlled substance. 

Researchers at the Perelman School of Medicine at the University of Pennsylvania tested psilocybin on laboratory mice with chronic nerve injury and inflammatory pain.

They found that a single dose reduced both pain, anxiety and depression in the mice, judging by their behavior. The benefits lasted almost two weeks.

Unlike many pharmaceuticals, researchers say psilocybin gently activates specific nerves in the brain, called serotonin receptors.

“Unlike other drugs that fully turn these signals on or off, psilocybin acts more like a dimmer switch, turning it to just the right level,” lead author Joseph Cichon, MD, an assistant professor of Anesthesiology and Critical Care at Penn, said in a press release.

”This new study offers hope. These findings open the door to developing new, non-opioid, non-addictive therapies as psilocybin and related psychedelics are not considered addictive.”

To pinpoint where the effects originated, researchers injected psilocin — the active metabolite that the body rapidly converts from psilocybin — into different parts of the mice’s central nervous system. The team then used advanced fluorescent microscopy, a technique that uses glowing dyes to detect nerve activity, to see which neurons are activated and firing.

When psilocin was injected directly into the prefrontal cortex of the brains of the mice, it provided the same pain relief and mood improvements as when psilocybin was given to the whole body. But when researchers injected psilocin into the spinal cords of the mice, they found that it didn’t have the same calming effect.

“Psilocybin may offer meaningful relief for patients by bypassing the site of injury altogether and instead modulating brain circuits that process pain, while lifting the ones that help you feel better, giving you relief from both pain and low mood at the same time,” said Cichon.

Researchers hope their findings, published in the journal Nature Neuroscience, could help spur advancements in treatments for other conditions, such as addiction or post-traumatic stress disorder.

Cichon says more research is needed to determine the effectiveness of psilocybin.

“In my anesthesiology practice, I often see that both pain and mood symptoms can worsen following surgery due to the physiological and psychological stress imposed by the procedure,” he said. “While psilocybin shows promise as a treatment for both pain and depression, it remains uncertain whether such therapies would be safe, effective, or feasible in the context of surgery and anesthesia.”

The Penn team plans further studies to investigate dosing strategies, long-term effects, and the ability of the brain to re-wire itself through the use of psilocybin.

“While these findings are encouraging, we don’t know how long-lived psilocybin’s effects are or how multiple doses might be needed to adjust brain pathways involved in chronic pain for a longer lasting solution,” said co-author Stephen Wisser, a PhD student in Cichon’s lab.

While the DEA considers psilocybin an illegal substance with no accepted medical use, Oregon and Colorado have legalized it for supervised therapeutic use. Several cities in California, Michigan, Minnesota, Washington and Maine have also decriminalized it. And efforts are underway to change psilocybin’s federal status. 

The Food and Drug Administration has granted a breakthrough therapy designation to psilocybin to expedite research and drug development. Over 60 scientific studies have shown the ability of psilocybin and other psychedelics to reduce pain from fibromyalgia, cluster headache, complex regional pain syndrome (CRPS) and other conditions.

Over 15 Million Americans Prescribed Gabapentin Despite Warnings

By Pat Anson

The use of gabapentin (Neurontin) continues to soar in the United State, often for chronic pain and other health conditions the drug is not approved to treat, according to a new analysis by CDC researchers.

In 2024, gabapentin was the fifth most prescribed drug in the U.S., with prescriptions nearly tripling since 2010, according to findings published in the Annals of Internal Medicine. The number of patients prescribed gabapentin reached 15.5 million in 2024, up from 5.8 million in 2010.

Gabapentin was originally developed as an anti-convulsant. It was first approved by the FDA as a treatment for epilepsy and later for neuropathic pain caused by shingles. But it is also routinely prescribed off-label for depression, ADHD, migraine, fibromyalgia, bipolar disorder, cancer pain, postoperative pain, and many other conditions.

Off-label prescribing is legal and, in some cases, appropriate. But for gabapentin it has reached extreme levels, with studies estimating the drug is prescribed off-label up to 95% of the time. Gabapentin has been used to treat so many different health conditions that a drug company executive called it “snake oil.”

"This study highlights a slowed, but continued, increase in gabapentin dispensing from retail pharmacies in the United States," wrote lead author Gery Guy Jr., PhD, of the CDC National Center for Injury Prevention and Control. "As gabapentin dispensing continues to increase, particularly among older populations, prescribing physicians and advanced practitioners should be alert to the potential adverse effects of gabapentin."

Side effects from gabapentin include mood swings, depression, dizziness, fatigue and drowsiness.  A recent study found that gabapentin raises the risk of dementia.

Gabapentin has also become a street drug, after drug users found it can heighten the effects of heroin, cocaine and other illicit substances. Nearly 10% of overdose deaths in 2020 involved gabapentin, with most of those deaths also involving illicit opioids. A recent analysis of drug tests found gabapentin in over 13% of urine samples that tested positive for fentanyl.

“Although gabapentin alone is infrequently involved in fatal overdose, serious breathing difficulties may occur in patients with respiratory conditions or those using gabapentin in combination with opioids,” said Guy.

The CDC has a checkered history with gabapentin. The agency’s 2016 opioid prescribing guideline promoted gabapentin and its sister drug pregabalin as non-opioid alternatives for neuropathic pain, without any mention of their possible side effects.

The CDC’s revised 2022 opioid guideline is a bit more cautious. It says gabapentin can produce “small to moderate improvements in chronic pain and function,” but can also cause blurred vision, cognitive effects, sedation, and weight gain.

Medical experts say doctors need to do a better job warning patients about the side effects of gabapentin, and the medication should be stopped if a patient reports little or no benefit. They also think medical guidelines have exaggerated the effectiveness of gabapentin and should be revised.

How Opiophobia Paved the Way for Tylenol Hysteria

By Crystal Lindell

The dirty little secret about alternatives to opioids is that they are all mostly bullshit.

They’re expensive, sometimes outright dangerous, and perhaps worst of all, ineffective.

So when doctors are telling you that you don’t need opioids to treat your pain, what they are really saying is that you don’t need pain treatment at all.

And that’s exactly the message that people are getting from the Trump administration’s recent guidance to avoid taking Tylenol while pregnant.

Specifically, the administration is now advising women not to use acetaminophen — which goes by the brand name Tylenol — for pain and fever during pregnancy due to claims that it raises the risk of their babies developing autism. 

Aside from the fact that science behind this claim is not definitive, the other major problem is that there is no safe alternative to acetaminophen that a woman can take for pain and fever while pregnant. Over-the-counter pain relievers like aspirin and ibuprofen can damage the kidneys of unborn babies.

President Trump admitted as much during the press conference about the new guidance, putting the onus on pregnant women to “tough it out” by not taking Tylenol

“Sadly, first question, what can you take instead? It's actually, there's not an alternative to that,” Trump said. “And as you know, other medicines are absolutely proven bad. I mean, they've been proven bad, the aspirins and the Advils and others, right?

“But if you can't tough it out, if you can't do it, that's what you're going to have to do. You'll take a Tylenol, but it'll be very sparingly.”

That’s a genuinely inhumane response to the pain pregnant women often endure, because what he’s really saying is that you just should not treat pain while pregnant. It’s also on-brand messaging for an opiophobic country that’s been dismissing everyone’s pain for almost a decade now.

As it turns out, when you tell people that their pain doesn’t deserve to be treated by opioids, then it’s a quick path to the idea that pain shouldn’t be treated by other substances, be they cannabis or kratom or Tylenol. 

In the end, it all really comes down to a fundamental question of whether or not pain is worthy of treatment.

And unfortunately, for many healthcare professionals and government officials, the answer is a resounding “no.” They do not believe that pain is worthy of treatment – as long as it’s not their pain. Because, make no mistake, when these types of policies come out, that’s exactly who they apply to: other people.

They know that they themselves will get to use opioids if and when the time comes that they need them for their own pain. And they don’t expect to have a pregnancy themselves, so of course they don’t care if pregnant women can’t have their pain treated.

It's why Trump can so dismissively say "there's no downside in not taking it." He means there is no downside to him if you don’t take Tylenol.

But for pregnant women, there most certainly is a downside. Failing to treat fever and significant pain can pose serious risks to both the mother and baby, resulting in miscarriages, birth defects, depression, infections and high blood pressure.

Enduring untreated pain can wear you down in ways you can’t even predict. It will destroy your sleep, steal your hope, and even make you mean. When it’s your pain, you’ll do anything to make it stop.

Pain is a medical condition on its own, and “toughing it out” is not an effective treatment. Until we as patients and voters demand better, I fear both the government and our healthcare system will continue chipping away at the pain treatments we still have — until there is literally nothing left but silent prayers and fleeting wishes.

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.  

Medical Cannabis Helps Insomnia Patients Sleep and Reduces Pain

By Pat Anson

Insomnia patients taking medical cannabis reported better sleep quality, as well as less anxiety, depression and pain, according to a new study published in PLOS Mental Health.

The study is notable because it showed sustained improvement in symptoms over 18 months of treatment with medical cannabis. Most previous studies are much shorter.

Researchers at Imperial College London followed 125 patients diagnosed with an insomnia disorder who were prescribed medical cannabis and enrolled in the UK Medical Cannabis Registry. Participants either ingested cannabis oil, smoked dried flower, or a combination of the two. Improvements in sleep and other symptoms were observed after one month of treatment and continued over the 18-month course of the study.

However, the magnitude of improvement declined over time, suggesting that some patients developed tolerance to cannabis. Less than 10% of patients reported mild side effects, such as dry mouth, insomnia and fatigue.

“Over an 18-month period, our study showed that treatment for insomnia with cannabis-based medicinal products was associated with sustained improvements in subjective sleep quality and anxiety symptoms. These findings support the potential role of medical cannabis as a medical option where conventional treatments have proven ineffective,” said co-author Simon Erridge, a PhD candidate at Imperial College and Research Director at Curaleaf Clinic, a cannabis dispensary.

“Conducting this long-term study provided valuable real-world evidence on patient outcomes that go beyond what we typically see in short-term trials. It was particularly interesting to observe signs of potential tolerance over time, which highlights the importance of continued monitoring and individualised treatment plans.”

The researchers say larger clinical trials are needed to confirm their finding of long-term efficacy. Most of the researchers are either employees or medical practitioners at Curaleaf Clinic.

A previous study conducted in Israel also found that cannabis helps with sleep, but regular use lead to drug tolerance and even more sleep problems. Over time, the benefits of cannabis were reversed, with frequent users finding it harder to fall asleep and waking up more often during the night.  

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.

Pain Research and Treatment Missing From 2026 HHS Budget

By Pat Anson

An estimated 60 million Americans suffer from chronic pain, costing the U.S. healthcare system about $77 billion a year.  According to the National Institutes of Health (NIH), chronic pain affects more Americans than diabetes, heart disease, and cancer combined.

You’d never know it though by reading the proposed $94.7 billion budget for the Department of Health and Human Services (HHS) released on Friday by the Trump administration.

There are nearly 21,000 words in the 55-page budget for 2026, and not a single word or dollar is devoted to pain research, treatment, or how to help those 60 million Americans.   

The only reference to pain is a quote attributed to HHS Secretary Robert F. Kennedy, Jr.

“A healthy person has a thousand dreams. A sick person only has one, and right now, there’s 60% of the people in this country who have only one dream – that they can make it through the day without pain, with energy, without having to take medications, and we are going to change that for this country,” Kennedy is quoted as saying.

One can quibble about whether RFK Jr. actually said those exact words or if they were invented for the budget document. In either case, many Americans living with chronic pain already get through the day without taking an effective pain medication, although its not by choice.

Kennedy has previously used the line about “a healthy person has a thousand dreams,” which is paraphrased from Confucius. Kennedy used it without attribution in his Senate confirmation hearing in January and again when he was sworn in as HHS Secretary a month later, but didn’t mention pain in either instance.   

Perhaps it’s only fitting, given how the topic of pain is notably absent from the HHS budget. What we get instead are platitudes about “making Americans the healthiest in the world,” while at the same time reducing the HHS budget by 26 percent, and downsizing or eliminating dozens of federal health programs.

The NIH faces some of the steepest cuts, with its $27.5 billion budget cutback to $18 billion. The Trump administration has already gutted the NIH’s Office of Pain Policy and Planning (OPPP), which focused on pain research. The OPPP’s entire staff was fired in April.

“Even though chronic pain is one of the leading health issues in America, it has never had a true home at NIH with a dedicated institute. Many pain researchers have described the NIH as a place where ‘pain lives everywhere and nowhere,’ and now, with the dismantling of the OPPP, I fear that pain may literally have no home at all,” Dr. Juan Hincapie-Castillo, an assistant professor at UNC Chapel Hill, wrote in The Charlotte Observer. Hincapie-Castillo received funding from OPPP for his studies of trigeminal neuralgia.

‘Embrace Radical Change’

In all, HHS plans to consolidate 28 operating divisions into 15, close five of its regional offices, and end funding for 5,000 contracts – all in the name of saving money.

“This planned realignment will allow the Department to do more at a lower cost to taxpayers by increasing operational efficiency and cutting bureaucratic sprawl,” the budget document states.

“America spends nearly one-third of the federal budget on healthcare, only to rank last in terms of health among developed nations. Americans are seeing declines in life expectancy and facing the highest rates of chronic disease in the world. HHS is committed to making Americans healthy again, making the American health system the best in the world, and putting patients first. To accomplish this, we need to embrace radical change.”

HHS is planning to move several agencies — including the Substance Abuse and Mental Health Services Administration (SAMHSA) and some programs in the Centers for Disease Control and Prevention (CDC) -- into a new agency called the Administration for a Healthy America (AHA), which would be under Kennedy’s direct control. AHA will administer $14 billion in discretionary funding to combat the “chronic disease epidemic.”

“(AHA) will prioritize prevention — a missing piece in the American health system — primary care, maternal and child health, mental health, substance use prevention and treatment, environmental health, HIV/AIDS, workforce development, and policy, research, and oversight,” the HHS says.

Note the absence of pain prevention and treatment in that sentence.

Opioids are mentioned nearly half a dozen times in the budget, but only in the context of addiction treatment, not pain management. Many of the CDC programs that deal with opioid abuse and treatment are being moved to AHA, and $4 billion in block grants for mental health and substance abuse treatment is earmarked for states and rural communities.

“States and local communities best know the way to serve their populations – not the federal government,” HHS said.

When he was running for president, Kennedy had ambitious plans to create a series of “wellness farms” in rural areas, where people addicted to illicit or prescription drugs could get treatment, job training and grow their own organic food.

“I’m going to create these wellness farms where they can go to get off of illegal drugs, off of opiates, but also legal drugs, psychiatric drugs, if they want to, to get off of SSRIs, to get off of benzos, to get off of Adderall, and to spend time, as much time as they need — three or four years if they need it — to learn to get re-parented, to reconnect with communities, to understand how to talk to people,” Kennedy said in 2024.

There is no mention of wellness farms or anything like it in the HHS budget, or in the “Make America Healthy Again (MAHA) Report,” which was also released by the Trump Administration last month.

Like the budget document, pain research and treatment are not discussed in the MAHA report, which has been widely criticized for its sloppy science and fake citations, including some that were apparently generated by artificial intelligence (AI).        

‘I Can Do It With a Broken Body’: How I Learned to Live with Chronic Pain

By Crystal Lindell

I can still remember the exact day when everything I thought I knew about physical pain was destroyed.

It was 2013, and I had just started to have chronic pain in my ribs a few months prior. Although it would eventually be diagnosed as intercostal neuralgia, and then years later as Ehlers-Danlos Syndrome, at the time nobody seemed to know what was going on. 

The pain was debilitating and I had no idea how to cope with it. Every doctor I saw told me that my imaging and labs were “normal” so there was nothing they could do. They just repeatedly upped my dose of gabapentin and sent me on my way – wash, rinse, repeat as the gabapentin failed to help. 

I had spent another sleepless night tossing and turning in agony as the pain on my right side wrapped around my torso like a spiked metal snake tightening its hold on me. I was stuck in that impossible cycle where the less I slept, the more pain I felt – and the more pain I felt, the less I slept. 

At the time, I didn’t even know the term "chronic pain” yet, and I was struggling to find anyone else who seemed to understand what I was going through. Pain that never goes away was not supposed to happen – especially if there was no underlying injury that could be fixed with surgery. So it had not occurred to me to add "chronic" to my pain.

After being awake most of the night, I got up, dressed and drove myself to immediate care, hoping for a miracle. 

The miracle never came. 

I felt like I was going to die and thought that such a pain level would warrant some sort of response from a doctor – some sort of urgency. But instead, I was dismissed. Actually, worse than that, I was chastised for coming in again when they had already seen me a few weeks prior. 

After waiting over two hours to be seen, the doctor walked into the small exam room, looked up at me, recognized me from previous visits and scolded me, saying, “You still haven’t gotten this figured out?” 

As if I was the one who refused to figure it out. As if the doctors who all refused to help me couldn’t be held responsible because I was the one who was not doing my part. 

The only problem was, I had no idea what my part was even supposed to be. And more than a decade later, I’m still not always sure.

The doctor then quickly told me there was nothing they could do, and that I would need to follow up with my primary care physician. Then she told me to check out at the front desk. 

They did nothing to help me. Nothing at all. And the pain had only gotten more intense during all this. I went to my car feeling hopeless. And then I realized that my day was going to get worse. 

I had been dealing with this pain for multiple months at this point, which means I had already missed weeks worth of work. I suddenly realized that I was going to have to go to the office for the day. 

In pain. 

After spending all morning in immediate care. 

I was going to have to go to work. 

It’s a situation that would have seemed impossible to my healthy body just a few months before.. 

Up until that point, a trip to immediate care would have easily warranted a sick day from work. But even though it was only spring, I had already used up all my sick days for the year and then some. I couldn’t afford to miss a day for a health issue that was now as normal for me as it was horrific. 

After all, normal things require normal days. The pain was normal. So I had to go about my normal day and go to work. 

I sobbed in my car. It was the first time I truly understood that I was going to have to live my regular life in what was now regular pain. Prior to that moment, I would have assumed that the level of pain I was enduring was more than enough to make the world stop – or at least to make my world stop. 

I often think of the lyrics from the Taylor Swift song, “I Can Do It With a Broken Heart.” 

In the song, she laments having to go about her life with a smile after a bad romantic breakup left her feeling depressed, singing:

I was grinnin' like I'm winnin'

I was hittin' my marks

'Cause I can do it with a broken heart

For me, and millions of other people living with chronic pain, the title is slightly different: “I can do it with a broken body.”

Because that’s the thing about chronic pain, it seeps out into every aspect of your life like an oil spill, and you just have to live around it. I still have to work, feed my cats, feed myself, shower, pay bills, and see my family. 

It’s just that most days I have to do all that while also living with horrible pain. 

After more than a decade of living this way, I am relieved to report that I have found some coping strategies. I also moved and found new doctors, who took my pain more seriously, despite the lack of proof on MRI scans and blood work. 

I also meticulously scaled back my life over the years, peeling away things that I now understood were unnecessary. I live a quiet, low-commitment life, so that there is room to breathe while pain takes up all my oxygen. 

Things are not as bad as they were that day back in 2013. My pain is well managed, and my daily life is much more accommodating. 

And yet, the pain persists. It remains chronic. So I still spend most days “doing it with a broken body.”  Or as Taylor Swift put it:

Lights, camera, bitch, smile.

Even when you wanna die

Except for chronic pain patients, there are no lights and no camera. Just a life in pain. 

Doctors Finally Told to Take IUD Pain More Seriously

By Crystal Lindell

The American College of Obstetricians and Gynecologists (ACOG) is finally acknowledging just how painful some uterine and cervical procedures can be for women. 

They are now recommending pain treatment for in-office procedures that patients have long complained were under-addressed. 

The ACOG’s new guidelines address pain from intrauterine device (IUD) insertion, endometrial biopsy, hysteroscopy, intrauterine imaging, cervical biopsy, and other similar procedures. 

“There is an urgent need for health care professionals to have a better understanding of pain-management options and to not underestimate the pain experienced by patients and for patients to have more autonomy over pain-control options during in-office procedures,’ the ACOG said. 

While the recommendations vary by procedure, most of them involve some version of lidocaine, and a few recommend NSAIDs and naproxen. For more intense procedures and conditions like hysteroscopy, ablation, and polypectomy, they recommend local anesthesia. 

For IUD insertion, a procedure that patients have long complained was extremely painful, the ACOG recommends local anesthetic agents. More specifically, they recommend applying lidocaine cream, lidocaine spray, or a paracervical lidocaine block injection. 

The ACOG says pain management options “should be discussed with and offered to all patients seeking in-office gynecologic procedures."

However, there is a telling couple of sentences in the new guidelines that reveal how doctor-centered the thought processes around pain management still are. 

The ACOG acknowledges that some healthcare professionals tend to underestimate the pain that patients experience and that pain management “may not be discussed with or offered to patients.” Basically, some doctors don’t believe that patients experience pain, so they don’t even bother to offer pain treatment options. 

There may also be a false belief that a pain treatment that works for one patient must work for everyone.

“Several pain-management interventions being used have limited or conflicting evidence supporting their effectiveness at providing adequate pain control during in-office gynecologic procedures,” the ACOG said.

“Health care professionals therefore must be cautious when extrapolating data on what works for one procedure to another. Shared decision making with the patient should be practiced when discussing pain-management options because options that work for one patient may not work for another.”

It’s good they are acknowledging the issue. I always say that other people’s pain is always easier to endure. Of course doctors think pain management is unnecessary – they aren’t the ones in pain!

The ACOG adds that “despite patients reporting a higher level of pain than clinicians expect, patients still report a high level of satisfaction with office procedures.”

It’s so telling that they think that patient satisfaction scores should even be mentioned when deciding pain treatment guidance. As usual, there tends to be a focus on how patient pain impacts the doctor and their practice. And it’s even more telling that they think they don’t need to treat pain as long as patients don’t complain. 

In reality, doctors should be treating pain because pain sucks, and it’s the right thing to do!

I am glad to finally see more official guidance for doctors to treat pain that patients have long reported. But if doctors would just believe their patients when they report pain, they wouldn’t need the ACOG to tell them to treat it. 

A Pained Life: Riding the Medical Merry-Go-Round

By Carol Levy

I recently went to an Urgent Care clinic because the left side of my face -- the side with the trigeminal neuralgia and phantom pain -- was swollen.

Had it been the right side of my face, I have no doubt they would have prescribed antibiotics and sent me home. Instead, because it was the left side, it became a major issue of “What is it?”

That earned me another ride on the medical merry-go-round.

Urgent care recommended I see an otolaryngologist; an ear, nose and throat specialist. He did nothing for me, but did pronounce, “Yep, it's swollen.”

My family doctor prescribed steroids, ordered blood tests, and a CAT scan of my facial bones. That was no help.

Next came a dermatologist who said, “No idea. See your neurologist.”

So I did. She ordered an MRI of my facial bones and more blood work. Again, all negative.

My GP suggested another otolaryngologist. The second one said she didn’t know what was causing my face to swell, but prescribed an antibiotic anyway.

At the next appointment, I was floored when she asked, “Has anyone else told you your face is swollen?”

That implied I was making it all up. Even though the swelling was obvious. 

Pain is not obvious.  Articles tell us not to exaggerate our pain or to pretend that we’re not in pain. The lesson seems to be to avoid stigma or judgement by not indicating one way or another if we have pain.

Is it any wonder then that we're asked, “Are you sure it's really that bad?” Or it’s suggested that we’re not really hurting, and could work or get out of bed if we really wanted to.

Being questioned about the reality of our pain is an awful discussion to have. We say we have it. That should be enough. And to some doctors, very few it seems, it is.  We say we have pain and they accept it.

Then, of course, there are the doctors whose philosophy is “seeing is believing.” Because our pain is often invisible to the eye, they refuse to believe us.

Until now, it never occurred to me that also applies when we go to a doctor with a normal everyday complaint. They still didn’t believe me, even when the swelling was plainly visible.

I still have the swelling. No one has figured it out. It’s just one more instance where a chronic pain condition interferes with getting the medical care that we need. And send us for another ride on the merry-go-round.

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. 

FDA Warns Again About ‘Gas Station Heroin’

By Pat Anson

The Food and Drug Administration is once again warning Americans about the harmful effects of tianeptine, an antidepressant found in supplements sold online and in convenience stores to help with energy, mood, pain and sexual performance.

Tianeptine is essentially an unregulated drug in the United States. It is not currently scheduled under the Controlled Substances Act, but is also not approved by the FDA for any medical use. It is, however, approved in low doses as a treatment for depression and anxiety in several European, Asian and Latin American counties.

The problem in the U.S. is that tianeptine is being sold in supplements without a prescription at doses up to 250 times higher than what is typically recommended in foreign drug products. At high doses, tianeptine can cause confusion, agitation and euphoria – which has led some to call it “gas station heroin.”

“I am very concerned. I want the public to be especially aware of this dangerous product and the serious and continuing risk it poses to America’s youth,” FDA Commissioner Dr. Martin Makary said in a “Dear Colleagues” letter to healthcare professionals.

“While the FDA is closely following the distribution and sale of these products, it is critical that you appreciate the magnitude of the underlying danger of these products, and disseminate information about it.”

This isn’t the first time the FDA has warned about tianeptine. In 2023, the agency warned consumers not to purchase or consume tianeptine products sold under the brand name Neptune’s Fix, which it blamed for “severe adverse events” such as seizures and loss of consciousness. A few months later, the FDA sent a warning letter to retailers telling them to stop selling Neptune’s Fix and any other products containing tianeptine.

Makary’s letter does not make clear why another warning about tianeptine is needed. It implies the drug is increasingly used by young people, but provides no statistics or examples of it harming users.

Since 2023, the FDA’s Adverse Events Reporting System has recorded less than a hundred cases of adverse health events involving tianeptine, most of them involving “persistent genital arousal disorder.”

Like other antidepressants, tianeptine can be used to relieve pain. A 2023 study on laboratory mice found tianeptine to be a fast-acting pain reliever, with low risk of addiction.

“We hope this revives the potential of using tianeptine for the treatment of chronic pain and associated conditions, such as anxiety and depression,” said lead author Venetia Zachariou, PhD, Chair of Pharmacology at Boston University’s School of Medicine. “By further refining this molecule, we could arrive at a pain treatment that is more effective, fast acting, and has a mild side effect profile.”

Other studies have show tianeptine may be effective as a treatment for asthma, irritable bowel syndrome, fibromyalgia, and ADHD. Like any drug, however, tianeptine can be harmful when its abused, taken in high doses, or combined with other drugs.

“Tianeptine is often taken recreationally, but it has also been used to self-treat a variety of ailments. It is frequently used chronically and, if stopped abruptly, users may experience withdrawal symptoms,” Makary said in his letter. “Historically, there has been a delayed recognition of fast-growing trends, such as opioid abuse and vaping addiction in youth. Let’s be proactive in understanding and addressing the use of tianeptine products.”

I Hate That I Need Opioid Pain Medication

By Crystal Lindell

I genuinely hate that I need opioid pain medication. 

I hate that I need it to function. I hate how expensive it is. I hate how I have to endure background checks like drug tests and interrogations to get it — like I was a criminal. 

I hate how tired it makes me. 

I hate that I can’t just buy it over-the-counter. I hate that I have to deal with judgmental doctors and pharmacists every single month to get it. I hate how vulnerable it makes me feel. I  hate how much stigma there still is around it. 

I hate that I hate it as much as I do, and yet people still think that I only take it because I’m a lazy loser who loves to get high. 

I hate that when I take it — it actually works — because that just shows how much I need it. 

Chronic pain sucks. But needing daily pain meds for a chronic condition also sucks. 

I have gone to great lengths to try to get off opioids — to try to live without them. 

I’ve done painful nerve block procedures, weekly lidocaine infusions at a hospital over an hour from my house, and gone to every specialist in that hospital. I’ve tried THC, kratom, nicotine gum, wine, and capsaicin cream. I’ve tried yoga, chiropractors, and acupuncture. I’ve tried gluten-free diets, losing weight, daily walking, and prayer.

I’ve also tried to just live with the pain. 

But I can’t. I still need opioid medication. 

I need it to shower. I need it to work. I need it to relieve the pain that makes me suicidal if left untreated.

Without opioid pain meds, I’d either be too disabled to function, or in too much pain to live. 

And I hate that so much. 

I wish that was not the case. I wish I could just exist in this stupid world without needing opioids to be alive, to actually live. 

I wish there was some other way to manage my chronic pain or even better, that I didn’t have chronic pain to begin with.

But alas, that is not the case. I literally need opioid pain medication to survive. 

So I keep taking it. 

I keep submitting to all the stupid hurdles put in place by doctors, pharmacists, and the DEA. I keep coming up with money to pay for my appointments and prescriptions. And I keep enduring the stigma that comes with it.

But I still have hope that one day people who need opioid pain medication won’t have to hate that they need it. That they’ll have access to it, and that they won’t have to submit to dehumanizing treatment to get it. 

I hope that one day needing opioid pain medication won’t be a burden to patients that must be endured on top of whatever ailments they already have. I’d rather they just bring the relief they were intended for.

The healthcare system doesn’t have to be like this. We can change it. Opioid pain medication could be accessible, inexpensive, and stigma-free. We just have to make it so.

The Nocebo Effect: How Negative Expectations Can Make Pain Worse

By Pat Anson

You’ve probably heard of the placebo effect – the phenomenon where a patient’s symptoms improve after receiving a sham or fake medical treatment. Although not fully understood, experts think the placebo effect occurs when someone believes a treatment will work, which tricks the brain into releasing endorphins and other hormones that relieve pain and help us feel better.

Less well known is the nocebo effect, which works the opposite way. When patients think a treatment won’t work or may even cause harm, their pain and other symptoms will get worse, not better.

German researchers wondered whether the placebo or nocebo effect was stronger, and enrolled 104 healthy volunteers in a study to find out.

“While many studies have explored placebo and nocebo effects individually, few have directly compared the two in the same people over time,” says co-lead author Katharina Schmidt, PhD, a researcher in the Department of Neurology at University Duisburg-Essen, Germany. “We set out to determine whether negative expectations towards treatment have a stronger or longer-lasting effect on pain perception than positive ones.”

The volunteers were given two sham treatments one week apart. On the first day, participants were exposed to short bursts of heat pain after being led to believe that they would feel either pain relief (placebo), increased pain (nocebo), or no change (control).

The expectations were created using a combination of verbal suggestions from researchers and a fake pain relief treatment – a sham nerve stimulator that appeared real but delivered no actual relief. Participants were then asked to rate the intensity of their pain on a scale between 0 (not painful) and 100 (unbearably painful). Unbeknownst to the participants, researchers adjusted the heat stimulus to reinforce their expectations – making it less painful in the placebo condition and more painful in the nocebo condition.

In the second session, the heat stimulus was kept identical for the placebo, nocebo and control groups, allowing researchers to test whether expectations formed on the first day continued to shape the participants’ pain perception.

The results, published in a reviewed preprint in eLife, show that both placebo and nocebo suggestions significantly influenced pain perception – but the nocebo effect was stronger.

On the first day, participants in the nocebo group rated their pain an average of 11.3 points higher than the control group; while the placebo group rated their pain only 4.2 points lower than the control group.

When participants returned one week later for the second session, the patterns persisted. The nocebo effect remained stronger than the placebo effect, with participants in the nocebo group rating their pain 8.9 points higher than the control group. The findings in the placebo group were more modest, with average pain ratings just 4.6 points lower than the control group.

“This suggests that people are more likely to expect and feel worse outcomes than better ones,” says Schmidt. “It reflects a ‘better-safe-than-sorry’ strategy – humans may have evolved to be more attuned to potential threats, making negative expectations carry more weight.”

Schmidt and her colleagues found that participants who experienced a strong placebo or nocebo effect on the first day were more likely to show the same response a week later. Psychological factors were also involved. Participants who rated the researcher in the sham sessions as highly competent were more susceptible to nocebo effects – possibly because they found the negative suggestions more believable.

“Our findings highlight the enduring nature of both placebo and nocebo effects in pain, with nocebo responses showing consistently greater strength over time,” said senior author Ulrike Bingel, MD, Director of the Interdisciplinary Center for Pain Medicine and Translational Pain Research at the University Duisburg-Essen. “While we often focus on boosting positive expectations in patients, we show that it may be just as important – if not more so – to avoid unintentionally creating negative ones, which appear to be more easily triggered.”

Bingel said the study demonstrates the need for better communication between patients and practitioners in real-life clinical settings. Negative or positive outcomes for patients can be triggered by how doctors and nurses communicate with them. In other words, a good bedside manner can improve patient outcomes.

“Positive framing, avoiding unnecessary emphasis on side effects, and building a trusting relationship can all reduce the risk of triggering nocebo responses. In a time when cost-effectiveness in healthcare is essential, preventing nocebo effects should be a key strategy for improving treatment outcomes,” said Bingel.

A recent study found that about a third of patients with irritable bowel syndrome (IBS) falsely believe that gluten or wheat trigger their symptoms. This may be a nocebo effect, where patients experience IBS symptoms after eating what they consider unhealthy food, even when there is no evidence that they are sensitive to wheat or gluten.