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. 

THC-Dominant Cannabis Effective in Treating Anxiety and Depression

By Pat Anson

As many pain sufferers already know, anxiety and depression are common when you live with poorly treated chronic pain.

A recent study found that 40% of adults with chronic pain have clinical symptoms of depression or anxiety. Pain sufferers with fibromyalgia were particularly vulnerable to emotional stress, along with those who are younger and female.   

New research suggests that medical cannabis could be an alternative to antidepressants and anti-anxiety drugs like Xanax. The small observational study, recently published in the Journal of Affective Disorders, found that adults with and without pain experienced significant and sustained relief from anxiety and depression after they started using medicinal cannabis.

Researchers at Johns Hopkins University School of Medicine and La Trobe University followed 33 volunteers in Maryland over a six-month period. Participants completed assessments of their anxiety and depression at the start of treatment, and at one, three, and six months after beginning cannabis use.

Most participants selected cannabis products containing tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis, and experienced clinically significant reductions in anxiety and depression within three months. Acute or immediate relief was dose-dependent, with participants who ingested 10–15 mg of oral THC or at least 3 puffs of vaporized cannabis reporting the most relief from anxiety and depression.

There are some caveats about using higher doses. Participants reported feeling “high” using THC-dominant cannabis, and some were so impaired it affected their driving abilities. But overall, the results were positive.

“Initiation of THC-dominant medicinal cannabis was associated with acute reductions in anxiety and depression, and sustained reductions in overall symptom severity over a 6-month period. Controlled clinical trials are needed to further investigate the efficacy and safety of medicinal cannabis for acute anxiety and depression symptom management,” researchers reported.

Previous studies have also suggested that medical cannabis is most effective when it also contains THC.

A recent study of 64 patients in Germany with inadequately treated chronic pain found that a cannabis extract with equal parts THC and CBD (cannabidiol) substantially reduced their self-reported pain intensity.

“Our findings indicate that treatment with medicinal cannabis improves both physical and mental health in patients with chronic pain,” researchers reported in the journal Advances in Therapy. “The results suggest that medicinal cannabis might be a safe alternative for patients who are inadequately treated with conventional therapies.”

In a 2019 analysis of self-reported health data from over 3,300 cannabis users, researchers reported that THC was more effective than CBD alone in treating chronic pain, insomnia and other medical conditions. Cannabis products containing higher doses of THC provided the most relief.

Another small study conducted in Israel found that “microdosing” small amounts of THC significantly reduced pain levels in patients suffering from neuropathy, without the risks of impairment and other cognitive issues.

Study Links Gabapentin to Increased Dementia Risk

By Crystal Lindell

Gabapentin (Neurontin) may significantly increase the risk of dementia and cognitive impairment, even for middle-aged patients who only took the nerve medication for six months.

That’s according to a new study, published in the Regional Anesthesia & Pain Medicine journal, which looked at health records for over 26,000 U.S. patients with chronic low back pain.

Researchers found that patients with six months or more of gabapentin use had a 29% higher risk of developing dementia and an 85% higher risk of developing mild cognitive impairment (MCI). 

Gabapentin was originally developed to prevent epileptic seizures, but is now commonly prescribed off-label as an alternative to opioids for pain management.

Researchers have long been concerned about gabapentin’s effects on neurotransmitters in the brain, while patients have complained the drug causes brain fog, dizziness, weight gain and worsens mood. 

Perhaps the most startling aspect of the study is that gabapentin increases the risk of dementia and cognitive decline in middle aged adults.

Dementia risk more than doubled and MCI risk tripled among 35–49 year olds. A similar pattern was observed among 50–64 year olds.

Risks also rose the more often patients use gabapentin. Those with 12 or more prescriptions were 40% more likely to develop dementia and 65% more likely to develop MCI than those with fewer prescriptions.. 

“Our findings indicate an association between gabapentin prescription and dementia or cognitive impairment within 10 years. Moreover, increased gabapentin prescription frequency correlated with dementia incidence,” wrote lead author Nafis Eghrari, a medical student at Case Western Reserve University School of Medicine.

“Our results support the need for close monitoring of adult patients prescribed gabapentin to assess for potential cognitive decline.”

As a patient who has taken gabapentin for chronic pain, these results are alarming to say the least. And I wonder if the findings would also apply to pregabalin (Lyrica) and other gabapentinoids in the same class of medications. I have also been prescribed Lyrica. 

I don’t believe I was ever warned that gabapentin could increase my risk of cognitive decline, despite the fact that was a known concern. I don’t know if such a warning would have deterred me from taking it, but that’s still a choice that should have been given to me. 

I am also concerned that the information about these very real risks associated with even relatively short-term gabapentin use will reach patients and prescribers. Sales of gabapentin and pregabalin have tripled from a decade ago, when they were first touted as safer alternatives to opioids. 

Gabapentin is FDA-approved for epilepsy and neuropathic pain caused by shingles, but is also prescribed off-label for depression, ADHD, migraine, fibromyalgia, bipolar disorder and postoperative pain.  

Anyone prescribed gabapentin for pain should be told that using the medication for just six months greatly increases their risk of developing dementia. However, I doubt that will happen. In my experience, while medical professionals are quick to point out the supposed risk of opioids like hydrocodone, they often push alternatives like gabapentin onto patients without much discussion. 

The assumption is always that anything must be safer than opioids. Unfortunately, that doesn’t always seem to be the case. 

When Doctors Don’t Care: The High Cost of Untreated Pain

By Neen Monty

I just returned from seeing my GP.

I explained to her what happened while she was away — that the doctor who filled in for her refused to prescribe the full amount of my pain medication. As a result of being shortchanged, I went through four days of untreated, severe pain.

My GP said nothing.

I asked why the other GP said she couldn’t prescribe. My GP responded with, “I can’t comment on that.”

I was wondering who was lying to me, and assumed it wasn’t my GP. My GP believed my medications would be prescribed, in good faith.

They weren’t. The other GP lied to her.

And in doing so, she knowingly left someone with a painful, progressive, incurable disease to suffer in agony. Because she could. That’s not medicine. That’s abuse.

That GP should not be practicing.

The most fundamental job of a doctor is to relieve suffering. To relieve pain.

We are now in a world where doctors refuse to treat pain -- and most other doctors say nothing about it. There are no consequences for being derelict in their duty of care.

We’re in a world where people with long-term diseases and permanent disability are being left in agony, discarded by a medical system that sees us as burdens, not as patients. We are not being treated, we are being tortured.

Doctors who refuse to treat pain in people with serious, documented illness are not neutral. They are sadists. And they have no business practicing medicine.

I’m not talking about someone with a mild headache or a sore knee. I’m talking about severe, constant, intractable pain. Pain from MS, RA, Parkinson’s, adhesive arachnoiditis, spinal cord injuries, cancer, and many, many more horrible diseases. Diseases that destroy lives.

And yet, doctors are allowed to ignore us. Abandon us. Deem us unworthy of relief.

Like I was.

My own GP, who knows me and knows my history, did nothing. She simply "fixed" the problem by giving me the rest of my prescription: 90 tablets. Enough for 14 days.

But where was her anger? Her outrage? She promised I’d be looked after while she was away. I wasn’t.

She was betrayed by this other GP as much as I was. But she said nothing. She will accept that this other GP decided not to treat my pain and won’t mention it at all.

And next time my GP goes away? What then? I can’t see the other GP again.

Insult to injury is that I’ve now had to pay for three GP visits this month. That’s $180 I didn’t have.

I endured four days of relentless, unmanaged pain. Because one GP decided I don’t matter.

Because she looked at me and saw garbage. Not a person. Not worthy of her time. Her disgust and disdain towards me were open and palpable.

And no one held her accountable. No one will hold her accountable. She is a law unto herself.

If you ever wondered what it feels like to be dehumanized in real-time, to be made invisible because you're sick and in pain, to be deemed worthless, this is it.

I am very unwell. And I’m in a lot of pain. When pain goes untreated for many days in a row, it is not so easy to get it back under control again.

Treating pain patients like garbage has to stop!

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

Neen 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.”

Scientific Review Dismantles Myths Behind ‘Opiophobia’

By Crystal Lindell

“There is little evidence that physicians and surgeons prescribing opioids for short-term pain relief leads to substantial levels of opioid use disorder (OUD), addiction, or death.”

That one sentence, found in a new scientific review, cuts straight to the heart of America’s irrational fear of opioids — also known as opiophobia.

Published in ACS Pharmacology & Translational Science and authored by John Bumpus, PhD, the paper looks at the irrational fear that prescribing opioids in any capacity is harmful – and how little evidence there is to back up such claims. 

Bumpus opens his report by saying that there is a false narrative that “even short-term (seven days or less) use of opioids under medical supervision to treat acute pain will often lead to opioid use disorder (OUD) and/or addiction.”

As a result of that narrative, many healthcare professionals and policy makers believe that the best way to address this problem is to “avoid using opioids altogether or to severely limit the use of prescription opioids, especially after surgery.” 

Bumpus says many providers also assume that limiting prescriptions will significantly reduce overdose deaths. Then he adds the line that cuts to the heart of opiophobia: 

“There is, however, substantial evidence that this is not the case.”

In that one sentence, Bumpus dismantles the main argument that’s often used to claim that opioid restrictions are necessary: the idea that such restrictions are “evidence-based.” 

His report lays out how opioid-related misconceptions have led to policy decisions that are not only unsupported by evidence — but are often harmful. Anyone who has had trouble accessing needed opioid medications over the last few years will find the article both cathartic and affirming.  

Bumpus, who’s a Professor of Chemistry and Biochemistry at the University of Northern Iowa, starts the paper by defining "'opiophobia'" based on the definition shared in a 2023 paper, “Opiophobia and the tragedy of needless pain”

Opiophobia led many patients and providers to “fear, avoid or condemn the use of these compounds,” which Bumpus calls ‘the most effective family of analgesics known.”

While large chunks of the report focuses on surgical patients in post-operative pain, Bumpus says that many chronic pain patients use opioids “successfully and appropriately,” but have been “adversely affected by the catastrophization of issues and misinformation surrounding the use of opioids and the opiophobia it has generated."

Bumpus asserts that anti-opioid zealots have gone too far. 

“Although opioid-free protocols and policies may have their benefits and role, for some physicians, researchers, administrators, and politicians, the elimination of opioids appears to have become a goal in and of itself,” he warns. 

Bumpus says there's an underlying assumption "that physicians and surgeons are currently overprescribing opioids." He then adds, "Nationally, this does not appear to be the case."

While the number of opioid prescriptions decreased by about 50% from 2010 to 2022, Bumpus says deaths involving prescription opioids have remained constant. Meanwhile, fatal overdoses from illicit fentanyl and other synthetic opioids have skyrocketed.

“It does not appear that prescription opioids are the major problem here,” Bumpus concludes

He says those advocating for severe opioid limitation often ignore the adverse effects of alternatives like acetaminophen.

"For example, annually in the U.S., acetaminophen overdose is responsible for over 56,000 emergency department visits, 2600 hospitalizations and 500 deaths,” he writes. “Acetaminophen overdose is also the most common cause of acute liver failure and the most common reason for liver transplants in the U.S."

He says that "the narrative that the opioid crisis is caused by the prescribing habits of ethical, conscientious, and caring physicians is patently untrue."

Rather, what is true is that the “undertreatment of postoperative pain is a serious ongoing concern.”

Misleading Data Used to Justify Opioid Restrictions

While opioid-restricting polices may be well-intentioned, Bumpus says there is little evidence that physicians prescribing opioids for short-term pain leads to substantial levels of misuse.

For example, some of the claims used to justify opioid restrictions rely on a study that found 30% of Medicaid patients prescribed an opioid for the first time developed opioid dependency.

That is claim is misleading. The researcher was simply citing the fact that 30% of patients who filled a single opioid prescription needed a refill 3 to 9 months later. Getting a refill alone hardly meets the criteria for opioid dependency, much less addiction.

Bumpus says opioid restrictive policies have had the unintended effect of encouraging patients to store leftover opioids at home, which only makes them more likely to be misused by someone else. 

"Ironically, programs aimed at reducing access to opioids and their long-term storage may actually incentivize the hoarding of these medications," he says. 

People storing leftover opioids is understandable though, when patients fear their future pain will be untreated or they won’t be able to see a doctor.

"Long-term storage of opioid medications and self-medication may not be behaviors endorsed by the medical profession,” Bumpus says. “However, such behaviors are understandable human reactions, and they undoubtedly occur." 

Bumpus argues that while it’s illegal and medically unsupervised, using leftover prescription opioids is safer than turning to street drugs:

“These drugs serve as a relatively safe supply of opioids for people who use them,” he writes.

Ultimately, Bumpus says the public “should have access to information that accurately portrays the benefits as well as the risks associated with the medicinal use of opioids.” 

His paper is heavily researched and includes over 200 footnotes, including several PNN articles that debunk the narrative about opioid misuse being common. 

Bumpus says his paper is important for administrators, policymakers, and lawmakers to read, “so that mistakes of the past are not repeated, making sure that ill-conceived laws and policies are not put in place that do more harm than good.”

Bumpus is correct, of course, and his message is urgent. Now the medical community and policymakers just need to actually listen to him. 

A Pained Life: Stop Torturing Us

By Carol Levy

For many chronic pain conditions, such as Complex Regional Pain Syndrome, trigeminal neuralgia and Ehlers Danlos Syndrome, a major aspect is the spontaneity of pain attacks. They can come at any time and without warning.

Not being able to anticipate a pain flare may sound familiar to you. It causes psychological stress, keeping you in a constant state of fear and anxiety. The lack of predictability deprives a person of any sense of normalcy or control over their situation, causing helplessness and despair.

That often leads to other health problems and interrupts the sleep cycle, causing fatigue, disorientation and even cognitive decline. 

Where did this description of chronic pain come from?

It is actually a description (with some word modification) of torture and how disruptive it can be to a person. It’s striking how similar chronic pain and torture can be.

Having chronic pain is torture to me in an abstract way: I have pain. I can't find a way to stop it. I suffer as a result.

Like pain, torture is worse when it arrives unexpectedly and you have no way to stop it. You may be feeling okay, when suddenly a blitzkrieg of pain invades. You have no control or defense, and have no choice but to wait it out, cowering under the covers waiting for it to pass.

The Center for Victims of Torture writes this about using unpredictability as a torture technique:

“Randomizing torture makes it even more psychologically damaging and ethically problematic, as it deprives the victim of any control or predictability.”

Too often doctors miss the ethical implications of the effect of the pain on us, much less when one aspect of it is the unpredictability. The need for them to understand it is a necessary component of taking care of us and our needs --- what a physician, in the truest sense of the word, should do.

Too many of them, even those who claim “pain management” as their specialty, seem to get tired of listening as we explain the various ways our pain manifests. Most pain conditions don’t have a nice clean orderly way of detail.

It can be torturous to deal with the medical profession and its reluctance to accept our stories about living with chronic pain. It is harder still when a patient has the additional spontaneity of pain, being repeatedly physically and psychologically bombarded by it, and their defenses on the verge of being destroyed.

Doctors don’t seem to be able to understand this on their own. We may come to them psychologically tattered because of the pain. Those of us with spontaneous pain may come to them appearing very emotionally fragile.

As hard as it is, as difficult our lives already are due to the pain, we may have to be the ones to teach them, to help them to understand why we are so torn and battered. At the end of the day we need to tell them: “Please, listen to me. Understand me. Please, don’t be another level of torture.”

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. 

People Who Live in Rural Areas Have More Pain and Less Access to Treatment

By Crystal Lindell 

A new study by researchers at the University of Texas at Arlington found that people living in rural areas have significantly higher rates of chronic pain than those who live in big cities. They’re also at a big disadvantage when it comes to getting their pain treated.

As a rural resident myself for the last 11 years, I have some thoughts as to why this might be. I think one of the causes may be a little different than what researchers often assume. 

The study used data from a national health survey of over 10,000 people in 2019, and then followed up with them a year later in 2020. 

Respondents were split into four pain categories; those with no pain, nonchronic acute pain, chronic pain, and high-impact chronic pain (HICP), which is pain that significantly impacts daily life.

Participants were then assigned to one of four urban-rural metro areas based on where they live: Large Central Metro (big cities with at least one million people), Large Fringe Metro, Medium and Small Metro, and Non-Metropolitan (Rural).

The chart below shows that the highest rates of chronic pain (27.8%) and HICP (10.4%) were found in rural non-metropolitan areas. Pain rates were progressively lower in metro areas with more people. 

Notably, 43.1% of the people living in big cities had “no pain,” while only 34% of those in rural areas were pain free. That’s a statistically big difference.

The Journal of rural health

“We already know about the rural-urban gap in mortality and life expectancy,” said Feinuo Sun, PhD, an assistant professor of kinesiology at UT Arlington and lead author of the study in The Journal of Rural Health.

“But when you look at pain, especially chronic pain, it becomes clear that rural residents face additional burdens.”

Sun and her colleagues say their findings highlight the rural disadvantage that exists in pain development and treatment. Due to health care shortages in rural areas, people have limited access to pain treatment and lower quality services.

They also found that the percentages of people transitioning from milder pain conditions in 2019 to more severe ones in 2020 were highest in rural areas. Even when starting from the same baseline pain status, people in rural areas fared worse after one year compared to those in urban areas.

“Without early intervention, (chronic pain) can have serious long-term consequences, including premature mortality. That's why targeted outreach and early pain management strategies are so important," said Sun.

Rural residents are also more likely to work physically demanding jobs and experience higher poverty rates, both of which contribute to chronic pain.

Those are definitely contributing factors. People who live near me in northern Illinois tend have more physically demanding work, such as farming and construction, and they have a much harder time accessing good healthcare. 

Personally, I have to drive almost two hours each way just to see my primary care physician, because I have to get more complex pain care. That’s where the closest university hospital is to my house. 

Lower Cost of Living

But there’s another reason that is easy to overlook if you don’t live out here: Rural areas are much cheaper than urban ones. 

That’s literally the reason I choose to live in a rural area. The rent in my area is astronomically cheaper than nearby metro areas, and much less compared than a big city like Chicago. 

If you're managing a life with chronic pain, you’re going to be less likely to be able to work and you’re also going to be more likely to spend more of your income on medical expenses. You’ll need a cheaper place to live.

Additionally, many people move out to rural areas like mine because it’s easier to live on Social Security, disability or pensions. None of those benefits increase based on your local cost of living, so it makes sense to live in a rural area where the same amount of money can go much further. 

So it’s not always physically demanding labor that causes more pain in rural areas. It’s being in chronic pain that makes it more likely you’ll move to or stay in a rural community.

Of course, the researchers also found an association with opioid medication, because what would a pain study be in 2025 if the authors didn’t link it in some way to opioids?

The UT researchers think that  “elevated pain levels, along with fewer treatment options, may help explain the heavier reliance on opioids” in rural communities. They’re already working on a follow-up study to examine disparities in pain care. I can already tell them some of the answers they seek. 

People in rural areas are more likely to take opioids for pain care because they are incredibly cheap and accessible. Even if a rural area doesn’t have a local pharmacy, you still have access to mail-order pharmacies. 

And if a rural area doesn’t have a physical therapist, acupuncturist or a massage therapist, there are few alternatives besides opioids. Opioids also require fewer appointments with providers, which are at a premium when doctors are 2 hours away or more.

In the end, geography shapes both our pain and standard of living. Rural areas need better access to healthcare and more populated areas need lower costs of living. We can help people, we just have to work in both directions.