Brains Control Pain Differently, Depending Where It’s Felt

By Crystal Lindell

Different parts of the brain are more active when relieving pain — depending on where the pain originates — according to a new Australian study. The finding could lead to more targeted and effective treatments that utilize the body’s own pain relief system.  

Researchers  at the University of Sydney made the discovery while studying the placebo effect. They used MRI brain scans to monitor 93 healthy participants, while exposing them to painful heat on various parts of the face, forearm and leg. 

Before the test, participants were given a placebo analgesic cream and told it would help relieve their pain. In reality, the “lidocaine” cream was a placebo and researchers secretly lowered the temperature of the heat, tricking the participants to believe the cream was easing their pain. 

The heat stimulus was applied to the placebo-treated area, as well as a separate untreated area for comparison. Up to 61% of participants reported less pain in the area where the cream was applied, typical of a placebo response.

The MRI scans showed how the brain responded to the placebo effect. Researchers found that upper parts of the brainstem were more active when relieving facial pain, while lower regions of the brainstem were engaged for arm or leg pain. 

“This is the first time we’ve seen such a precise and detailed pain map in the human brainstem, showing us that it tailors pain relief to the specific part of the body that’s experiencing it,” lead author Lewis Crawford, PhD, a Research Fellow at the University of Sydney, said in a press release. 

Understanding which brainstem areas are linked to different parts of the body may open new avenues for developing non-invasive therapies that reduce pain.   

“The brain’s natural pain relief system is more nuanced than we thought,” said Crawford. “Essentially, it has a built-in system to control pain in specific areas. It’s not just turning pain off everywhere; but working in a highly coordinated, anatomically precise system.”     

“We now have a blueprint for how the brain controls pain in a spatially organised way,” said senior author Luke Henderson, PhD, a Professor in the School of Medical Sciences and the Brain and Mind Centre. “This could help us design more effective and personalised treatments, especially for people with chronic pain in a specific area of their body.”

It is important to note that none of the “healthy” participants had chronic pain, and thus these results may only apply to short-term, acute pain that is treated with a placebo.

Nevertheless, the study challenges long-held assumptions about how pain relief works. Instead of relying on medications that target opioid pain receptors in the brain, researchers say receptors in the brainstem could be targeted with cannabinoids. 

“Opioid-based pain relief typically activates central areas of the brain and can affect the whole body, whereas the cannabinoid circuit that we identified appears to operate in more targeted regions of the brainstem,” said Crawford. “This supports the idea that cannabinoids may play a role in localised, non-opioid pain control.”

Most oral pain medications today – including acetaminophen, ibuprofen and opioids – work by telling the brain to relieve pain throughout the entire body. This research opens the door to more targeted therapies that relieve pain in specific parts of the body.

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. 

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.  

Most Pain Patients Stop Using Medical Cannabis Within a Year

By Crystal Lindell

A small new study found that most pain patients taking medical cannabis stopped using it within one year. 

The research – which was published in PLOS One  – looked at 76 patients diagnosed with chronic musculoskeletal pain, such as back, shoulder and knee pain. The patients were all certified for medical cannabis use at the Rothman Orthopaedic Institute in Pennsylvania between 2022 and 2024

By the first 3-month check-in, 44.7% (34 patients) had already stopped using medical cannabis, which researchers described as “a considerable early drop-off.” 

“This early discontinuation could point to initial expectations not being met, potential side effects, or insufficient symptom relief, which are common reasons for discontinuation in medical treatments,” wrote lead author Sina Ramtin, MD, who was a Research Fellow at the Rothman Institute. 

“Despite the growing acceptance of MC (medical cannabis) as a therapeutic option for chronic musculoskeletal pain, significant gaps remain in understanding its long-term efficacy. While some patients report significant pain relief, others experience dissatisfaction, intolerance, or prefer more definitive treatments, such as surgery or joint injections.” 

By one year, another 10 patients stopped using medical cannabis, which resulted in a total discontinuation rate of 57.9% (44 patients).  

Age was the biggest factor researchers found that separated those who continued using medical cannabis from those who didn’t. The patients who discontinued cannabis tended to be older (mean age of 71.5 years) than those who continued with cannabis therapy (64.5 years).

The researchers think age-related concerns about cognitive side effects, dizziness, or drug interactions may have played a role in decisions to stop using cannabis. Another possible explanation for the high discontinuation rate in elderly patients is that they are more likely to have more advanced pain conditions, such as degenerative disc disease and osteoarthritis, which are more difficult to treat.

The origin of pain, health insurance, and a patient’s race did not seem to have a significant impact on cannabis use, although a higher proportion of patients in the discontinued group reported low back pain. The research team attributed this to “the complexity of managing chronic pain conditions with medical cannabis alone.” 

Interestingly, the researchers did not find much difference in the health outcomes between those who continued using medical cannabis and those who didn’t. They looked at physical and mental health scores for patients, and found that there were no significant differences between the two groups.

“These findings suggest that while MC may offer benefits for some patients, further research is needed to better understand the long-term effects of MC on pain management and patient satisfaction, as well as the factors influencing treatment adherence,” the authors said. 

There has been a strong push over the last decade to reduce the use of prescription opioids, leaving patients little choice but to experiment with “alternative” pain treatments such as medical cannabis. Research like this reinforces the idea that cannabis is not always a perfect option for treating chronic pain.

“The relatively high early discontinuation rate indicates that MC may not provide immediate or sustained relief for all patients and highlights the need for better patient selection and management strategies in the early stages of treatment,” said Ramtin.

Also, while the study doesn’t delve into this, the cost of medical cannabis is often a huge barrier for pain patients. Medical cannabis can be much more expensive than the cash price of generic opioids, and is usually not covered by insurance.

Many of the patients in the study may have found more relief with opioids, but it’s unclear how many were given that option. 

At the end of the day, patients deserve a real choice when it comes to how they treat their pain. That means having access to different medications and therapies. Only then will people truly be able to find what works best for them.  

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.”

FDA Approves First New Fibromyalgia Drug in 15 Years

By Pat Anson

Fibromyalgia sufferers who have yearned for new treatments finally have one. Tonix Pharmaceuticals says the Food and Drug Administration has approved Tonmya for the treatment of fibromyalgia in adults -- the first new FDA-approved therapy for fibromyalgia in over 15 years.

Fibromyalgia is a poorly understand chronic pain condition that affects about 10 million Americans, most of them women. It causes an array of symptoms, such as widespread body aches, fatigue, insomnia, mood disorders and brain fog.

Until now, the FDA has approved only three medications for fibromyalgia: duloxetine (Cymbalta), pregabalin (Lyrica), and milnacipran (Savella). Many patients consider the drugs ineffective or have too many side effects.

“The FDA approval of Tonmya as a first-line treatment for fibromyalgia represents a landmark advancement for the millions of people in the U.S. suffering from the debilitating pain this condition causes,” Seth Lederman, MD, CEO of Tonix, said in a press release. “At Tonix, we recognized the transformative potential of pursuing a new approach with Tonmya for fibromyalgia, a chronic overlapping pain condition, that has gone without innovation for many years.”

Tonmya is more of a sleep aid than an analgesic. The tablet is a new, faster-acting formulation of an old drug: cyclobenzaprine hydrochloride (Flexeril), a muscle relaxant that was originally developed as an antidepressant. Tonmya is meant to be taken before bedtime sublingually, to be dissolved under the tongue for rapid absorption into the bloodstream.

Tonix believes that improving sleep quality, specifically restorative sleep, is the key to reducing fibromyalgia symptoms. Poor sleep not only worsens pain, but causes anxiety and depression, which are common features of fibromyalgia. Pain, insomnia, and mood disorders become a vicious cycle when fibromyalgia is poorly treated.

In a Phase 3 clinical study, fibromyalgia patients taking Tonmya reported better sleep and less fatigue after three months, which coincided with at least a 30% reduction in pain in about half of patients. Tonmya was generally well tolerated, with fewer side effects than the other three fibromyalgia medications.

It’s notable that all of the FDA-approved drugs for fibromyalgia are neither new or novel. They were originally developed for other purposes — to relieve depression or seizures — and are simply being repurposed as fibromyalgia treatments.

“The chronic pain of fibromyalgia is debilitating to every aspect of a person’s life, including causing sleep disturbance and fatigue, all of which can negatively impact someone’s ability to carry out their daily activities,” said Sharon Waldrop, founder of the Fibromyalgia Association. “For over 15 years, this community has been underserved and waiting for new treatment options. This approval is a promising step forward and brings renewed hope to millions.”

Tonmya is expected to become available in the fourth quarter of 2025.

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. 

Large Study Finds Medical Cannabis ‘Effective Treatment’ for Chronic Pain

By Pat Anson

Medical cannabis is an “effective treatment option” for chronic pain and significantly improves quality of life in long-term users, according to a large new study.

Researchers at George Mason University and the medical cannabis telehealth company Leafwell analyzed healthcare trends for over 5,200 chronic pain patients. Those who had used medical marijuana for at least one year reported fewer unhealthy days and significantly better quality of life. They also had slightly fewer emergency department and urgent care visits than non-users.

“The findings of this study suggest, in line with existing research, that medical cannabis is likely an effective treatment option for patients with chronic pain. Moreover, we found that, in addition to an increase in QoL (quality of life), medical cannabis exposure is associated with lower risk of urgent care and ED visits, when comparing patients who used medical cannabis for at least one year to cannabis-naïve patients,” researchers reported in the journal Pharmacy.

“This underscores the potential for not only QoL gains associated with medical cannabis use, but also positive downstream effects on the healthcare system resulting from treatment.”

The study did not distinguish between the types of medical cannabis consumed or what kind of chronic pain conditions that participants had. Most of the researchers work for Leafwell, which helps patients get medical marijuana cards in states where it is legal. The company does not manufacture or sell cannabis products.

Pain Relief #1 Reason for Use 

Pain relief is the most likely reason for people to use cannabis for medical reasons, followed by those seeking help with sleep, anxiety and stress, according to a new survey of over 4,000 cannabis users in California.

There were distinct differences between participants who used cannabis solely for medical reasons and those who used it for both medical and recreational purposes.

Medical users were more likely to be female, and to live in households with children. Their average age at first use was 34, compared to 23 among combined users, who were more likely to be male.

Medical users spent less money on cannabis, about $127 per month, compared to combined users ($186), and used it far less frequently (1-3 times a week vs. multiple times a day).

Medical users also had less desire to “feel the high” from cannabis (42% vs. 75%).

Medical/recreational users were more likely to smoke dried flower (65%), while medical users preferred edibles (48%), topical ointments (28%) and oils (18%).

“Cannabis use is growing with expanding legalization, necessitating more research to understand the ramifications of increased access, and better understand the factors influencing the choices and options available to users. Special attention should be given to medicinal users, who may represent a vulnerable group seeking symptom relief,” researchers at UC San Diego reported in the Journal of Cannabis Research.

While medical cannabis is gaining in acceptance, many healthcare providers still take a dim view of it. The American College of Physicians (ACP) recently released a cautious new guideline that recommends against the use of medical cannabis for most patients with chronic noncancer pain. Medical cannabis may produce small improvements in pain, function and disability, according to the ACP, but potential harms include addiction and cognitive issues, as well as cardiovascular, gastrointestinal and pulmonary problems.

Could a Stem Cell Arthritis Treatment for Dogs Work in Humans?

By Crystal Lindell

New research suggests that an experimental anti-cancer therapy can also relieve chronic osteoarthritis pain in dogs and may be useful as a pain treatment for humans.. 

The stem cell DNA therapy – called Elenagen – has shown promise in clinical studies as a treatment for cancer patients by reducing side-effects from chemotherapy. Because chronic nerve pain and inflammation often result from chemotherapy, researchers thought the anti-inflammatory effects of Elenagen might also reduce chronic pain.

In a pilot study, weekly intramuscular injections of Elenagen were given to 17 dogs suffering from severe osteoarthritis pain. After the injections, 90 percent of the dogs showed at least a one‑point drop in their pain severity scores and a two‑point drop in pain interference.

“These dog data suggest we can help the body to manufacture its own multi‑modal anti‑inflammatory—without opioids or steroids,” said Alexander Shneider, PhD, founder and CEO of CureLab Oncology, which is developing Elenagen. 

“The majority of older cats and dogs suffer from osteoarthritis and the chronic pain it causes. Indeed, my four-legged family member, Sparky, is one of them.”

Sparky wasn’t involved in this study, but the dogs that were showed a marked reduction in limping and increased activity and playfulness after just four injections. Before and after evidence of their improvement can be viewed here: 

Dogs were chosen because their size and frequent development of pain conditions such as osteoarthritis suggests that what works for them might also work for humans. 

In addition to its anti-inflammatory properties, Elenagen is said to be able to reprogram aged or dysfunctional mesenchymal stem cells (MSC) by “resetting” them – breaking the inflammation-pain cycle.

“The successful validation of this hypothesis may signal a potential, disease-modifying approach to treating chronic pain in both veterinary and human medicine,” CureLab said in a press release. 

No treatment‑related adverse events were observed in the dogs; their hematology and serum chemistry remained within normal limits. The actual structure of their joints also remained unchanged after the injections. 

The dogs’ functional improvement suggests that Elenagen targets pain biology directly, offering meaningful relief when other therapies fall short.

“These dog data suggest we can help the body to manufacture its own multi‑modal anti‑inflammatory-without opioids or steroids," said Shneider. 

Larger, placebo-controlled trials in both dogs and humans are planned for 2026. 

In clinical testing of Elenagen on human ovarian cancer patients, the drug slowed cancer progression and increased overall survival rates, with no harmful side effects. The company is also studying Elenagen as a treatment for cancer in cats and dogs.

The Underlying Causes of Chronic Pain Need Treatment, Not Just Symptoms

By Dr. Forest Tennant

In today’s healthcare system, a single disease or condition is usually given to a person as the cause of their severe chronic or intractable pain. These common labels include Complex Regional Pain Syndrome (CRPS), adhesive arachnoiditis, pudendal neuropathy, traumatic brain injury, small fiber neuropathy, and osteoarthritis.

The singular diagnosis is usually the more prominent cause of pain – and is often required for record keeping, insurance coverage, justification for medicinals, and for diagnostic testing.

An emerging fact, however, is that the person who has severe chronic pain and requires daily symptomatic relief almost always has pain in more than one body system or anatomic site. For example, in a recent study we found that persons with adhesive arachnoiditis have an average of three to four other painful conditions. This reality is best called by an older medical term: “multi-system disease.”

A multi-system disease is one that has a single cause that affects multiple body systems. Historically, an infectious bacteria or virus has been the cause of multi-system disease. The best known are syphilis and tuberculosis. The former originates in sex organs and the latter in the lung, but both infections can travel through the blood, infecting and forming disease in multiple body systems, such as the brain, spinal cord, and adrenal gland.

In the late 20th century, diabetes and autoimmune diseases such as systemic lupus became known as causes that may affect multiple body systems. In this century, it has been discovered that genetic connective tissue diseases such as Ehlers-Danlos syndrome, Lyme disease, and the Epstein-Barr virus may affect multiple body systems and produce chronic pain.

Some patients develop severe chronic pain as a result of trauma or injury to a single body system, such as the brain, spine, joints and nerves. The pain may initially remain localized to that one body system. The majority of persons in pain treatment, however, subsequently develop pain in other anatomic locations or body systems.

The genetic, infectious, and autoimmune causes of multi-system disease appear to all be progressive, with a proclivity to affect, over time, additional tissues and systems. Our view is that the progressive nature of multi-system disease may not just cause intractable and disabling pain, but may also lead to the impairment of physical and mental functions that severely incapacitate an individual. Suicide or a shortened lifespan may be involved in severe cases.

Modern day pain treatment is fundamentally about symptomatic relief.  This includes opioids, neuropathic agents, anti-inflammatory drugs, and electromedical measures. It’s time that we recognize that the underlying causes of chronic pain should also be treated, and not just the symptoms. This is a clarion call to recognize multi-system diseases, determine their underlying cause, and simultaneously treat them and the pain that they 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.    

On August 16, Dr. Tennant is hosting a free seminar in Westminster, Colorado on the latest research and treatments for adhesive arachnoiditis. Visit the conference website or click on the banner below for more information. All attendees are encouraged to register by August 1.

A Cautionary Tale: Why Lived Experience with Chronic Pain Matters

By Neen Monty,

I went undiagnosed with a serious, painful, progressive and incurable neurological disease for over a decade, because nearly every healthcare professional I saw assumed I was a hysterical woman with a low pain tolerance.

I am not that stereotype. I am the opposite.

Because doctors, GPs, neurologists, rheumatologists, nurses and physical therapists dismissed me and refused to do proper diagnostic tests, I now live with permanent disability and unrelenting, severe pain.

Had I been diagnosed by the first neurologist, the second, or even the third, I would have had a good chance at remission. At not being disabled. At not being in pain for every second of the rest of my life.

Early treatment leads to better outcomes in most diseases. Mine included.

It was assumed that the pain I was describing was from my rheumatoid arthritis. But, because my bloodwork showed no inflammation, it was assumed that I just had a low pain tolerance. And that I was a bit hysterical. A bit of a malingerer. A bit of a pussy.

Never assume.

Never once did they consider I was telling the truth about the severe neuropathic pain I was experiencing.

I was fobbed off by every doctor. I was told I had everything from plain old run of the mill anxiety to a functional neurological disorder. I was referred to a psychologist, who I did consult. But my mental health has no bearing on my pain.

These diagnoses were wrong. Dead wrong. And very harmful.

They made assumptions based on a stereotype I do not fit. They made snap judgments. They failed to do their jobs.

And the price was my life. The quality of my life.

Doctors talk about the fear of making a mistake that kills someone. But they never seem to consider the damage when they condemn you to a life of unrelieved, preventable suffering. They never consider their bias, their laziness, their ignorance, might steal someone’s future. Condemn someone to a lifetime of disability and pain.

Never. Even. Considered it.

But that’s what happened to me.

I am not posting this because I am bitter. I do not dwell on this. I get on with my life, I make the best of what I have.

But my story is important.

It is a very important cautionary tale that more doctors, therapists and health care professionals need to consider: Your mistakes can ruin lives. If you misjudge someone, if you get it wrong, you might be destroying someone’s future. If you write on their file that they are hysterical or a hypochondriac or an addict, every future healthcare professional’s diagnosis will be coloured by your mistake and your misjudgment. You are condemning the patient, and you are preventing them from receiving the care they need.

My lived experience is a warning.

Read my story and ask yourself, honestly, would you have made that diagnosis? Would you have missed that diagnosis? Do you listen to your patients? When treatment fails, do you go back to first principles, start from scratch, and look for an alternate diagnosis? Or do you decide the patient is lazy, non-compliant, hysterical, or lying?

Do you blame the patient? Reflect on that honestly. Ask yourself honestly.

This is why lived experience matters. Why it is essential in patient advocacy. And why so many advocacy organizations are failing. They don’t understand the problems that those of us who live with severe pain face. They speak about us, but not for us.

So please. Read. Reflect. Ask the hard questions. Because it’s not just about life or death.

It’s about the life someone has to live after you get it wrong.

I could have had a normal life.

I didn’t have to be this disabled.

I didn’t have to be in this much pain.

But by the time anyone took me seriously, my disease was long-standing. Entrenched. Irreversible.

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is rare, but it is very real. The pain is constant. Every second of my life, I have pain.

And the kicker? No doctor wants to treat it.

No one believes it can be that bad. Not friends. Not family. Not doctors.

Every doctor I saw may not have known exactly which neurological disease was causing my symptoms, but they should have known it was a neurological disease they were looking at. They should have recognized the red flags. They should have followed up.

Instead, they saw hysteria. They saw hypochondria. They saw a woman who was “overreacting.” A woman with “health anxiety.”

CIDP is a horrific disease. It has stolen my life. And it didn’t have to. I am 54 years old. I have been in pain for almost 20 years now. I live with significant disability. It did not have to be this way.

Again, this is not about blame. I am not bitter.

But I ask you to read and reflect. Ask yourself, honestly. Would you have made that diagnosis? Would you?

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.”

How Federal Budget Cuts May Impact Chronic Pain Care

By Mara Baer,

President Trump recently signed a sweeping budget reconciliation bill – known as the One Big Beautiful Bill -- that makes significant cuts to Medicaid of nearly $1 trillion. The legislation will fundamentally change the way Medicaid is administered by states and reduce health care coverage for millions over time.

The Republican-led effort was positioned to reform and right-size the Medicaid program, which over 70 million Americans rely on for healthcare coverage. But the reality is that for many people, including those living with chronic pain, significant losses of access to care and coverage will result. The new law’s provisions will:

1. Establish new work requirements for Medicaid eligibility for people aged 19-64

2. Reduce provider fees and related federal funding, further reducing state Medicaid revenues

3. Mandate more frequent Medicaid eligibility determinations

4. Disallow access to Affordable Care Act tax credits for those failing to meet the new work requirements.

While some of the law’s provisions do not take effect until 2026 or later, states must act now to implement complex and costly requirements. Many have already begun the process. For example, in my home state of Colorado, a special legislative session is being considered to try and tackle some of the financial impacts.

Some of the key direct impacts on people with Medicaid who live with chronic pain include:

• Coverage losses. Work requirements for Medicaid beneficiaries to attest they are working at least 80 hours a month or get a work exemption. High impact chronic pain, which significantly interferes with daily life activity,  already prevents as many as 21 million Americans from working. Their ability to meet the new work requirements will be left to individual states, with some states having more onerous standards than others.

• Widening disparities. Data shows that chronic pain patients on Medicaid have worse pain severity and mental and physical functioning than non-Medicaid beneficiaries. As individuals lose their coverage or have reduced access to pain care, the disparity between these groups will widen. 

• Reduced access to multi-modal care. Research has found that there are disparities in coverage of chronic pain treatments by Medicaid and commercial insurance, with insurers providing more “restorative” therapies, such as physical therapy and chiropractic care. With state budget cuts, states will have to become even leaner in benefit structures and access, leading to possible reductions in comprehensive pain care, further widening the gap in insurance coverage.

• Fewer mental health services. Medicaid is the largest payer for mental health services. Because chronic pain and mental health are so intertwined, pain patients losing Medicaid coverage or experiencing service reductions for mental health face potentially significant impacts. This may include increased need for crisis services and more emergency department services.

With states now having to figure out how to implement these changes, some will have to make hard choices. Will new limits on benefits be required? Will they need to expand the use of prior authorization to help manage costs? Reduce benefits to the adult population? Cut new and innovative health services?

It is hard to know, but any of these issues can hit chronic pain patients particularly hard. Staying up-to-date on what is happening in your state will be important.

In addition to these issues, Affordable Care Act subsidies that help people buy coverage are set to expire at the end of the year. Many anticipate that Republicans in Congress will allow this expiration to happen. Combined with the expected coverage losses from the budget reconciliation bill, the number of uninsured Americans is expected to increase by 17 million.

If we do some basic math, applying the statistic that 1 in 4 Americans live with chronic pain, that’s over 4 million people in chronic pain losing coverage. From my point of view, even one is too many.

Mara Baer has lived with Neurogenic Thoracic Outlet Syndrome for over 10 years. She is a writer, speaker, and health policy consultant offering services through her women-owned small business, AgoHealth. Mara is a member of the National Pain Advocacy Center’s Science and Policy Council and writes a newsletter on Substack called Chronic Pain Chats.

That Time My Doctor Fired Me as a Patient

By Crystal Lindell

When I first developed chronic pain back in 2013, I had so little experience with our healthcare system that I genuinely thought that all my doctors would do everything possible to help me, like the doctor that Hugh Laurie played on the TV series House. 

The pain I developed came on suddenly and intensely. 

It wrapped around my right ribs like a rusty barbed wire, and I had no idea how to manage it, much less live with it. I just woke up with it one day when I was 29 years old, and it never went away. 

I initially went to the emergency room, where they told me that it was likely an ulcer. But after trying to treat that and still being in horrific pain weeks later, I went to a primary care doctor recommended by a friend. 

The doctor worked for a university hospital near Chicago and, at the time, I still thought that a good doctor would be able to figure out what was going on and be able to successfully treat it. After all, the pain was in such a specific place. Surely there was something they could do? 

But after weeks of multiple rounds of tests and imaging revealed no answers, that doctor started prescribing gabapentin and basically threw up his hands in defeat. 

The only problem was, while he could ignore my pain, I could not. It haunted me. 

The pain was slowly eating away at my life and my will to live. I had a desperate need to find help so that I could survive. 

The pain would keep me up for days on end, and I would sometimes get a friend to drive me to this doctor’s office first thing in the morning, desperate to see him and hoping he would help me. He would usually just increase my gabapentin prescription and send me on my way.  

It didn’t work. So, I kept calling and insisting on more appointments, naively assuming he would help me. 

After a few months of this, he gave me “the talk.” He said there was nothing else he could do for me and that he would no longer be seeing me. 

I was too shocked to even react. How could he give up when the pain was still persisting? How was I supposed to live like this?

He didn’t offer to refer me to anyone else. He just abandoned me. 

One thing you learn quickly as a chronically ill patient is that doctors hold all the power. If one decides to fire you as a patient, you don’t have much recourse. It doesn’t matter if you still need their help – they won’t be giving it to you. 

I’m sure the fact that I kept insisting on appointments annoyed him. But while he was facing annoyance, I was facing agony and desperation. I didn’t know what else to do. I needed his help, even after he stopped giving it. 

Out of necessity, I decided to uproot my life and move back in with my family, so that I could scale back how much I was working and focus on trying to figure out what was going on with my body. 

I eventually connected to a new doctor at a different university hospital and, thankfully, he did not give up on me. In fact, he was able to get me onto an opioid-based treatment plan that I still use today. He was able to give me back my will to live, and I still see him for my pain now.

My pain was eventually diagnosed as intercostal neuralgia, likely linked to my other eventual diagnosis, Ehlers-Danlos Syndrome. I still suffer from the pain today, but it’s much better managed. 

If you scroll through any online chronic illness group, you’ll find that a lot of other patients have also been fired by their doctors. 

I’m not sure what the solution is. After all, if a doctor doesn’t want to treat you anymore, it’s probably in your best interest to stop seeing them – they just hold way too much power over your body. 

But unfortunately, as it stands, they are able to leave you out in the cold with no alternatives for medical care. And if you’re suffering from a serious health issue, finding a new doctor can feel overwhelming and near impossible. 

Doctors should be required to refer your case to someone else if they want to fire you as a patient. They should have to help make sure that you’re still receiving healthcare, even if your condition is not acutely life threatening. 

I still wish the real world was filled with doctors who were as tenacious as Dr. House, but since it’s not, patients need more well-enforced rights. 

While doctors have the luxury of deciding which patients they will treat, patients are stuck living with the body that still needs treatment.. 

If we as patients aren’t allowed to give up on our health, doctors shouldn’t be allowed to give up on us.

Poor Nutrition Linked to Higher Risk of Chronic Pain

By Crystal Lindell

Vitamin and mineral deficiencies could play a key role in chronic pain, according to new research that found low levels of Vitamin D, B12, folate and magnesium were common in people with severe chronic pain. 

The study, led by researchers at the University of Arizona Health Sciences, analyzed health data on over 220,000 people in the National Institutes of Health’s “All of Us” Research Database. The study is the first to look at micronutrient levels of people with and without chronic pain on a large scale.

“I treat chronic pain patients, and oftentimes we don’t come up with a diagnosis. But just because there isn’t a surgery that will help you doesn’t mean you’re not in pain. It just means that our understanding of pain is limited to date,” said senior author Julie Pilitsis, MD, head of the Department of Neurosurgery at U of A College of Medicine–Tucson.

“This study is a novel way to approach chronic pain treatment, where you are looking at the patient holistically to see what could be going on systemically that is easily modifiable – changes in diet as opposed to medications or other things.”

Pilitsis and her colleagues focused on five micronutrients commonly associated with chronic pain: vitamins D, B12, and C, folate and magnesium. Nutritional data was analyzed for people without pain, those with mild-to-moderate chronic pain, and people with severe chronic pain.

They found that people with severe chronic pain were more likely to have deficiencies in vitamin D, vitamin B12, folate and magnesium. The findings, however, varied depending on gender, race and ethnicity.

“The finding that surprised us the most was that Asian females had higher vitamin B12 levels than expected,” said co-author Deborah Morris, PhD, a research laboratory manager in the Department of Neurosurgery. “Asian females with severe chronic pain had the highest vitamin B12 levels overall. We were expecting it to be lower.”

The results also varied for vitamin C, where males with mild-to-moderate or severe chronic pain were more likely to have low or borderline low levels of vitamin C, compared to males without pain. 

Researchers caution that they didn’t prove a cause-and-effect relationship between nutrition and pain, but they believe their findings could lead to personalized diets and nutritional supplements for people with chronic pain. 

The Western Diet, which is common in the United States, is deficient in fruits and vegetables and contains high amounts of meat, refined grains, and desserts. This could contribute to nutritional imbalances and deficiencies in micronutrients. 

Frustratingly, like so much medical research regarding chronic pain these days, it seems one of the primary goals of the researchers is to reduce opioid use. 

“Our goal is to improve the quality of life for people with chronic pain and reduce opioid usage, and these findings have the potential to do that as part of a holistic approach to pain management,” said Morris. 

Note how she doesn’t say she wants to help patients reduce ibuprofen or gabapentin use, despite the fact that both can cause serious side effects. 

I’m glad to see more progress when it comes to understanding the causes of chronic pain –  especially since I suffer from it – but constantly framing every advancement as a way to “reduce opioid use” is disappointing. Opioid prescriptions have already been greatly reduced to levels not seen in over 20 years.

While chronic pain patients should obviously be making sure their vitamin and mineral levels are within the normal range, my fear is that doctors will over-correct – and start pushing vitamins and supplements as alternatives to pain medication. 

I myself suffered from extremely low vitamin D levels, and I do find that keeping it in the normal range helps reduce my pain levels. Holistic treatments can be a good thing, but only if they are truly holistic – encompassing both non-traditional and traditional approaches.