Researchers Replicate Human Pain in Lab Dish

By Crystal Lindell

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

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

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

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

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

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

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

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

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

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

What Not To Say in the Emergency Room

By Carol Levy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What lessons have you learned in the ER?

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

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

By Crystal Lindell

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

New Guideline Cautions Against Use of Medical Cannabis for Chronic Pain

By Pat Anson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cannabis Oil Has Long-Term Benefits for Chronic Health Conditions

By Pat Anson

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

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

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

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

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

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

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

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

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

Sickest Patients Face Insurance Denials Over Prior Authorization

By Lauren Sausser, KFF Health News

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

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

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

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

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

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

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

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

SHELDON EKIRCH

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

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

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

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

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

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

The ‘Tipping Point’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘Unified Anger’

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

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

The video amassed millions of views.

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

“I told the truth,” Potter said.

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

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

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

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

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

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

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

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

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

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

The Final Denial

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

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

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

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

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

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

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

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

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

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

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

By Crystal Lindell

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Depression and Anxiety Affect 40% of Chronic Pain Patients

By Pat Anson

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

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

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

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

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

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

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

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

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

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

The Pain Scale is a Pain, but Doctors Ignore Alternatives

By Crystal Lindell

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

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

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

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

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

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

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

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

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

0 = No pain.

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

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

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

And so on. 

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

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

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

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

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

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

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

It features descriptions like: 

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

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

All the way up to:

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

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

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

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

Alas, I was mistaken. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Experts Divided About Benefits and Harms of Opioid Tapering

By Crystal Lindell

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

New Guideline Recommends Against Injections for Chronic Back Pain

By Pat Anson

An international panel of experts has released a new guideline strongly recommending against injections for chronic back pain, saying the procedures provide little or no pain relief and there is little evidence to support their use.

The guideline, published in The BMJ, covers 13 commonly used interventional procedures, including epidural injections, joint injections, intramuscular injections, nerve blocks, and radiofrequency ablation. The injections usually involve steroids, a local anesthetic, or a combination of the two.

The expert panel conducted an analysis of dozens of clinical trials and studies, and found “no high certainty evidence” of pain relief for any of the procedures. There was only low or moderate evidence that injections work better than a placebo or sham procedure.

Injections for chronic axial or radicular spine pain have become increasingly common in recent years, and are often touted as safer alternatives to opioid medication.

However, the injections also come with risks, including infections, prolonged pain and stiffness, accidental punctures of the spinal membrane, and rare but “catastrophic complications” such as paralysis. The risks are magnified because many of the procedures are performed multiple times on the same patient.

“The panel had high certainty that undergoing interventional procedures for chronic spine pain was associated with important burden (such as travel, discomfort, productivity loss), which would be recurring as these interventions are typically repeated on a regular basis, and that some patients would bear substantial out-of-pocket costs,” wrote lead author Jason Busse, DC, a professor of anesthesia at McMaster University in Ontario, Canada.

“The panel concluded that all or almost all informed patients would choose to avoid interventional procedures for axial or radicular chronic spine pain because all low and moderate certainty evidence suggests little to no benefit on pain relief compared with sham procedures, and these procedures are burdensome and may result in adverse events.”

Chronic back pain is the leading cause of disability worldwide. Over 72 million U.S. adults suffer from chronic low back pain, according to a 2022 Harris Poll. About a third of those surveyed rated their pain as severe and nearly half said they experienced chronic back pain for at least five years. The vast majority (80%) rated opioids as the most effective treatment.

Pain Management Needs ‘Major Rethink’

In an editorial also published in The BMJ, Jane Ballantyne, MD, an anesthesiologist and retired professor at the University of Washington, said the new guideline raises questions about whether interventional procedures should even be used to treat chronic back pain. 

“The question this recommendation raises is whether it is reasonable to continue to offer these procedures to people with chronic back pain. Chronic back pain is highly prevalent, a great deal of money is spent on the injections, and a lot of patient hopes and expectations are vested in this type of treatment,” wrote Ballantyne. 

“One might ask how the situation arose whereby we spend so much of our healthcare capital on a treatment for a common condition that compromises the lives of so many people but seemingly does not work.”

For Ballantyne to ask that is more than a little ironic. She is a longtime anti-opioid activist, a former president of Physicians for Responsible Opioid Prescribing (PROP), and was a key advisor to the CDC when it drafted guidelines that strongly recommend against opioid therapy.

With opioids increasingly difficult to obtain, many patients with chronic back pain have no alternative but to have interventional procedures, spinal surgeries, or implanted medical devices such as pain pumps and spinal cord stimulators.

Some doctors and pain clinics welcome the opportunity to bill for those expensive procedures, and refuse to give opioids to patients unless they agree to become “human pin cushions.”

One might ask how the situation arose whereby we spend so much of our healthcare capital on a treatment for a common condition that compromises the lives of so many people but seemingly does not work.
— Jane Ballantyne, MD

One might ask Ballantyne what patients with chronic back pain are supposed to do without injections or opioids. Her editorial provides no answers.

“This (new guideline) will not be the last word on spine injections for chronic back pain, but it adds to a growing sense that chronic pain management needs a major rethink,” Ballantyne wrote.

Earlier this month, the American Academy of Neurology released a new evidence review that found epidural steroid injections have limited efficacy, and only modestly reduce chronic back pain for some patients with radiculopathy or spinal stenosis.

Gretchen’s Journey Into Chronic Pain and Death  

By Maria Higginbotham

I write this on behalf of one of my dearest friends, Gretchen Lont, a fellow pain warrior whose spirit I cherished deeply. I made a promise to her to ensure her pain story is told. Gretchen’s last hope was that by sharing her experience, we might alleviate the needless suffering of others grappling with untreated or undertreated pain.

We call ourselves pain warriors, having fought tirelessly since 2016 for the rights of those struggling with painful conditions to receive adequate pain treatment. According to the CDC, over 24% of U.S. adults — 60 million people — suffer from chronic pain, surpassing the combined numbers of Americans afflicted by heart disease, diabetes, and cancer.

Tragically, Gretchen passed away on January 19, 2025 at the age of 59, after enduring years of unbearable undertreated pain. Despite persistent pleas to her doctors, Gretchen’s words fell on deaf ears. Just days before her death, she received a devastating diagnosis: ALS, also known as Lou Gehrig’s Disease.

This story in no way reflects all the beauty and individuality that was Gretchen. It defines her struggles with untreated pain, but there was an entire life in which she lived and loved. Her children and her family were her world.

I only ask that you respect her family’s privacy during this difficult time. She was a bright light that will never be erased from our hearts. I am heartbroken at the loss of a beautiful soul and dear friend.

Before her disability, Gretchen lived life vibrantly. She adored her three sons — Zach, Jordan and Nathan — and cherished every moment with her family, including her father John, her sisters Stacy and Kristen, and brother Michael.

She worked tirelessly to provide for her children and always carved out time for joy and laughter. She lived life to the fullest.

GRETCHEN LONT IN 2019

Gretchen embodied the belief that giving is a greater blessing than receiving. Her generosity knew no bounds, and her radiant smile could light up any room. With a feisty spirit, she was a fierce protector of her loved ones. She found solace in crafting — painting and making jewelry — each piece a testament to her incredible talent.

Animals had a special place in her heart. Gretchen’s social media was filled with adorable animal pictures. She often fed the squirrels and birds in her yard and adopted a special needs cat named Cleo saying, “We’re two damaged bodies just trying to survive, and we’ll do it together.”

Gretchen's journey into pain began with an accident at an upscale restaurant in Tacoma, WA. A spill that had gone uncleaned caused her to slip and fall, resulting in a severe back injury which later required surgery. This injury ushered in years of excruciating pain, followed by joint pain, more surgeries, and a possible diagnosis of Rheumatoid Arthritis at the age of 57.

Desperate for relief, Gretchen explored every alternative pain treatment available, yet none eased her suffering. Living with chronic pain is akin to living with a chronic illness: you feel invisible. On the outside, you might appear fine, but inside your body is screaming in agony.

Eventually, she found a compassionate pain management doctor who, for many years, treated her as an individual. With the help of opioid pain medication, she managed to regain a semblance of life — spending time with her family, painting and crafting, celebrating holidays, and enjoying the beauty of nature. Her passion for art blossomed, allowing her to create stunning jewelry and amazing paintings.

A Wasteland for Pain Patients

Sadly, Gretchen’s doctor, after years of facing scrutiny from medical agencies, decided to retire, joining many other physicians who closed their doors due to the hostile environment surrounding pain management. In 2021, she gave her patients a year’s notice about her plans, in the hope it would be enough time to find new care.

Unfortunately, the state of Washington proved to be a wasteland for chronic pain patients. Most physicians here are unwilling to take on new patients who are on opioid therapy, and those who do will often refuse to continue the opioids and force the patients to try previously failed methods.

Gretchen’s only option was to have an invasive surgery for a pain pump. To qualify, she had to undergo extensive psychological and physical evaluations, which she passed. However, she was then told she had to reduce her opioid dosage by 75%. This drastic cut left her bedridden, trapped in a cycle of agonizing pain.

After months of suffering, the pain specialist told her that her insurance, Medicaid, would not cover the cost of the pain pump or surgery. In desperation, Gretchen asked if her opioid medication could be increased to a dose that would provide some relief from the agonizing pain. Unfortunately, she only received a minimal increase, leaving her to continue suffering in unbearable agony.

On October 3, 2023, Gretchen felt a deep despair settle over her. Bedridden and in relentless pain, she questioned why a person should be forced to suffer this way. There was always a battle to fight -- like finding a doctor willing to provide adequate pain treatment, dealing with pharmacists who were choosing whether or not to fill a valid prescription for medication, and insurance companies not covering prescribed pain treatment.

She felt like a burden, unable to spend time with her family or do any of the things that brought pleasure in life. The pain specialist seemed indifferent to her deteriorating condition. Gretchen made the heartbreaking decision to take all her medications in an attempt to end her suffering. Fear gripped her and she confided in her son, who immediately called 911.

Resuscitated through CPR, the ER team noted that this tragic episode could have been avoided had her pain been managed appropriately. They had seen this happen many times. Gretchen was discharged with the recommendation to consult her pain specialist about increasing her medication.

The following day, during a virtual visit, her pain specialist expressed sympathy and promised to improve her pain management. Yet, hope quickly faded the next day at an in-person meeting. The doctor declined to increase her dosage, and Gretchen continued her downward spiral.

A friend referred her to a new doctor who specialized in both primary care and pain management. This physician was willing to help, but insisted on a cautious approach. They tried various medications, which provided minimal relief, but Gretchen’s health continued to decline.

The years of untreated pain had caused irreparable damage. She was losing 5-8 pounds weekly, struggled with swallowing, and faced increasingly severe breathing difficulties. She was a mere shadow of the vibrant person she had been two years prior.

A New Diagnosis

By late December 2024, Gretchen's breathing worsened, leading her doctor to recommend a visit to the Emergency Department at UW Medical Center for treatment of suspected pneumonia and a neurology consult.

That’s when Gretchen was diagnosed with ALS and learned that the suffering she endured for so many years stemmed from that incurable, painful, and deadly disease.

gretchen 3 days before she passed

It should be known that chronic pain patients often go decades struggling with intractable pain without a definitive diagnosis. Like Gretchen, many of us are diagnosed with a rare disease or medical condition when it’s too late to do anything. 

Admitted to the hospital on January 1, 2025, Gretchen was discharged to home hospice on January 17. Just an hour after returning home, she suffered a coughing fit and anxiety attack. Gretchen had realized she was dying.

I happened to call her at that moment and the only 2 words I could make out were “hospice” and “dying.” She was immediately sent to a nearby hospital, her body frozen in fear; her eyes and mouth wide open, arms outstretched. She stayed like that for just over 24 hours before she stopped breathing.

Long before she passed, Gretchen shared these words with me:

“Please help patients like me who have no options. We did not choose to have medical conditions that cause pain. No doctors will take you if you’re a chronic pain patient. It’s devastating to be in such a vulnerable position and feel abandoned. Our medical system is supposed to provide us with compassionate care and treat us as unique individuals. Instead, pain patients have become pariahs.

I share my story because I want those in power to understand that we are not just individuals suffering in pain. We are family members with loved ones who care for us and have loved ones that we care for. We deserve to live our lives filled with laughter and joy, not confined to a bed, incapacitated, and suffering in agonizing pain. There is an easy answer: treat our pain!

Please stop punishing those who suffer in pain. Our lives matter.”

Gretchen has her angel wings now, flying free from pain — a bright light in our lives whose flame will never be extinguished

Maria Higginbotham is a patient advocate and chronic pain sufferer who has an aggressive form of degenerative disc disease. Multiple surgeries not only failed to relieve her pain, but left her with adhesive arachnoiditis, a chronic inflammation of spinal nerves. Maria has also been diagnosed with Ehlers-Danlos disease and Scleroderma.

RIP Melissa Brooks: ‘It Starts with Pain and It Ends with Pain’

By Ann Marie Gaudon

Melissa Brooks wanted me to tell her story once she was dead. She wanted others in pain to know her experience in trying to access medically assisted death in Canada.

Melissa was in pain -- severe, intractable pain -- and if she met the criteria for Canada’s Medical Assistance in Dying (MAID) program, she’d be able to end her life with dignity and mercy.  Melissa suffered from multiple chronic conditions, was mostly wheelchair bound, and legally blind. Euthanasia is what she desired, but applying for MAID wasn’t easy.

“It starts with pain and it ends with pain. And there’s a bunch of medical system mess-ups in the middle,” Melissa told me.

Melissa was free with her words, so honest and articulate. She had different personas she’d use to tell people about her desire for death, because if she shared how deep her misery was, Melissa thought she’d lose friends. On the days she couldn’t hide her pain, she didn’t interact with people and expressed to me that this was a lonely place to be. Melissa felt that no one knew what she was going through.

“The quickest way to lose friends is to be honest about how much pain you’re in,” she said.

Curiously, once she requested MAID, Melissa felt a newness in her relationships. Her friends now knew they had a limited time to grieve and they no longer had to carry the “nitty gritty” of her for an extended time.

Most of our conversations happened as Melissa went through the strict process that MAID requires for medical assistance in dying to be granted.

I wrote a column about the many difficulties my friend Maggie Bristow had accessing MAID to end her life, after nearly three decades with chronic pain.

Melissa’s struggles with MAID were different. This intrigued me – what is going on here?  Why isn’t there a standard protocol? You meet the criteria and then you are approved. But that’s not what happened.

You need two doctors to assess your application for MAID. Melissa's first assessor pissed her off by repeatedly saying her medical condition was “complicated.”

Of course it was – all MAID cases are complicated.

MELISSA BROOKS AND HER SERVICE DOG, RUBY

“I’m complicated, my case is complicated, my pain is complicated. I think it’s medical BS and I almost fell for it, like I was asking for too much,” Melissa said. “I didn’t feel that complicated until these people were telling me that I was. I have been suffering for decades, my quality-of-life sucks, and I don’t want to do this anymore.”

‘A Moral Dilemma’

In 2016, Canada’s Parliament passed legislation that allows eligible adults to request medical assistance in dying. However, a person’s death had to be “reasonably foreseeable.” This was challenged and Parliament amended the legislation in 2020 to create the current two-track system.

MAID still requires a “grievous and irremediable medical condition,” but a reasonably foreseeable natural death is no longer necessary. If you’re likely to die soon, you’re on track one. If you aren’t and you still want an assisted death, you’re on track two.

With my friend Maggie Bristow, nothing was that simple. It took years for her request to be approved.

Melissa also went through struggles with MAID, with her first assessor questioning her mental well-being. The problem for them was that Melissa was not mentally ill.  The first assessor, not having found any reason to deny Melissa’s request except for her own conscience, did eventually say yes. But that did not come without a price.

“When the first assessor called me well after 8pm – when she knows that is not a good time for me -- she called to assassinate my character,” Melissa said. “She was so mean and made the process so much worse. She accused me of lying and yelled at me over the phone, ‘You’ve put me in a moral dilemma!’”

Poor Melissa was so upset. We talked about how this truly had nothing to do with her and that this particular assessor should not be working for MAID. Not all assessors are equipped to deal with life and death decisions.

This first assessor was so enraged and upset that she told Melissa she would next be seeing “the cream of the crop” assessor -- the one who teaches the others. It was bad news from the beginning, as his treatment was also less than desirable. He sent a psychiatrist to Melissa’s home to assess her mental health. 

The psychiatrist made it a point to tell Melissa that he preferred to begin with a clean slate and never searched or looked up anyone’s history before meeting them. That was a blatant lie. Melissa was an abuse survivor, but that was not the reason she was seeking MAID. The psychiatrist asked questions that only someone who had done a deep dive into her medical history would be asking.

It was all so fake, and Melissa fired this second assessor and his psychiatrist. She was back to having one yes.

‘Killed Me With Kindness’

Next came the third assessor and Melissa was hopeful. She seemed open and progressive. She told Melissa she identified as queer (I’m not sure why or how that would have mattered), but she was kind and that was an improvement.

The process of requesting and receiving MAID should take 90 days. Melissa’s case was taking much longer. In terrible pain and desperate, Melissa tried to take her own life. It did not work, but landed her in the psychiatric ward of her local hospital. I believe this is what sealed her fate with the oh-so-nice third assessor.

“(She) killed me with kindness after not even spending an hour with me, just to tell me she would be saying no,” Melissa said. Now Melissa was in limbo. She had a “yay” and a “nay” from two assessors.

That made Melissa even more frustrated. She met MAID’s criteria of being over age 18 and having an “irrevocable and grievous medical diagnosis” that could not be cured or treated.

“MAID’s job is not to fix the patient,” she told me. “Their job is to say, ‘Yes, they met the criteria’ and to move forward, not ‘This is icky because they’re young and they don’t look like they have a terrible life. They don’t look like they’re suffering or that they want to die.’”

Now Melissa had no help, no guidance, no nothing. She wanted to put in a complaint. But to whom?

A few miserable weeks later, she did get something. It seemed to begin as a urinary tract infection (UTI), which could be quite dangerous for Melissa as she was so physically vulnerable to begin with. Then she started to cough. I asked her if she would call her practitioner for treatment and she agreed, but I saw the writing on the wall.  Her doctor said she had a UTI, plus pneumonia, but agreed with Melissa that this could be treated from home.

You may have already figured out what came next. Melissa did not take the antibiotics she was prescribed, and stopped eating and drinking. She had a “Do Not Resuscitate” order from before she even applied for MAID. Can you blame her? I sure didn’t.

On January 30, while I was working, I had a voicemail message from Melissa telling me that she was going to begin palliative sedation that night and to say a gracious goodbye. She left her friend’s number to call should I need anything.

Melissa Brooks died on January 31, 2025. You might think for a moment that is what she wanted, but it is not. In the end, MAID was an epic fail for her. She wanted to die at home, perhaps with a friend like me, and for sure with her beloved service dog.

I am so sorry Melissa that everyone failed you. My hope is that you somehow find peace in the afterlife. You were one-of-a-kind and I shall never forget you. Blessings.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.   

The Best Advice I Got From My Therapist About Chronic Pain

By Crystal Lindell

I started having chronic pain at 29 years old, and the speed at which it upended my life left me with what felt like body-wide whiplash. 

I developed intercostal neuralgia seemingly overnight, which resulted in daily chronic pain in my ribs. 

At the time, I was working two jobs, maintaining an over-active social life, and living on almost no sleep. It’s a lifestyle I tried to maintain well after my body was telling me to stop.  

My mindset had not caught up with the new reality of my body yet, and I paid the price: I kept ending up in either the emergency room or immediate care. My body now had limits, and I was doing my best to ignore them. 

Because the pain was so severe and made me feel so hopeless, around this time I also asked my primary care doctor for a referral to a psychologist. The pain was making me suicidal. I needed help. 

In one of the best gifts of fate, the psychologist I was paired with had a lot of experience in helping people navigate chronic illness. She very likely saved my life. 

The first appointment I went to, I spent the entire hour sobbing about my new reality. 

Eventually, after we started meeting every other week, I came out of the fog, and her advice and guidance were what helped me finally start to see clearly. 

While I’m grateful for her tips about things like keeping a daily gratitude journal, and techniques she shared about how to communicate to my boss and my loved ones about my limitations, there was one piece of advice that helped the most. 

My therapist taught me about activity pacing. 

It sounds so obvious now that I understand the concept, but after living the first 29 years of my life at full speed and only sleeping when I physically could not stay awake a second longer -- pacing was revolutionary for me. 

The Basics of Pacing

In short, pacing is basically approaching activity levels in a more intentional way -- not doing too much and not doing too little. It also means that you don’t wait to rest until you need to. Instead, you rest proactively. 

So, rather than staying awake for 24 hours straight trying to get everything done for my two jobs, I started to stay awake for a more manageable 14 hours and then sleep for 9 hours. After waking up, I learned to slowly ease myself back into activities. 

Because I grew up in a culture where I was constantly told that working well past my limits made me a better person, pacing felt almost illegal. Until my therapist explained it to me, it had literally never occurred to me before that I could rest proactively.  

Making sure I was getting enough sleep made a drastic difference in the severity of my physical pain, and it also helped give me mental clarity for dealing with the shock and challenges of my new body. 

However, it did take me a couple years to fully understand the foundational principle of pacing: It’s not just doing too much that’s a problem, it’s also doing too little. 

Yes, therapy helped me to stop pushing myself beyond my limit, but for about a year after that, I went to the other extreme. I was so scared of aggravating my pain, that I spent every day in the house, doing work from home, and then sleeping – with little else mixed in. 

Around this time I found out that my vitamin D levels were dangerously low – the lowest my doctor had ever seen in a patient. I think it was because I was getting almost no exposure to sunlight for days on end. 

So that is what spurred me to learn that balance goes both ways. I started to understand the importance of doing some activities sometimes, and resting other times, without eliminating either one.

Pacing has become the foundation of my life these days, more than 10 years after I first started having daily chronic pain. It’s a huge factor in keeping me both physically and mentally healthy. 

You don’t have to just take my word for all this though. A small 2021 study showed how helpful pacing can be. 

According to a “Very Well Health” article about the study, the researchers taught participants – who all had chronic health issues – the basics of pacing.

The pacing framework included:

  • Recognizing current unhelpful behaviors

  • Finding baselines

  • Practicing self-compassion

  • Being flexible

  • Gradually progressing activities

The study found that the pacing results happened fast. Some of the patients who attended a rehabilitation center for issues related to chronic pain and fatigue experienced the benefits of pacing after just two sessions. 

The study also included quotes from the participants talking about how it impacted them. 

“Before going to the programme I was just stuck in a situation where I'd do what work I could when I could…and then suffered for it; and I didn't really think about it the same way as when it's explained to you,” one patient said. “So, whereas I thought I was pacing myself naturally, in a sense I wasn't.”

Indeed, that’s the magic of good therapy. It gives you a new perspective, and if you’re really lucky, it gives you tools that help you live a better life. 

I’m not here to tell you that pacing in our society is easy.. As I’ve said, it took me years to truly implement it into my life. And I still struggle with days when I over do it, or even rest too much. 

Overall though, as a foundational principal, pacing is the most important thing I do to manage my chronic pain. And I think if you try it too, you’ll find out first-hand just how helpful it can be.

A Pained Life: My Fantasy Trip to Nowhere

By Carol Levy

I'm watching TV. An ad comes on for a cruise to a tropical port. It looks so inviting.

At the store I overhear someone describing the “wonderful” trip they recently took to Europe, touring Paris and dining in a real Italian trattoria. Their joy in describing the trip is hard to miss.

For a minute, even two, my mind churns out fantasies of going on a trip of my own. Maybe a safari in Africa or a trip to France to see the Eiffel Tower and eat real French pastry. 

For a moment, my mind flies with the excitement of it, before crashing back to earth

In my mind I can take those trips. Because in my mind, in my fantasies and dreams, I have no pain. I'm just a regular normal person. Then the facts come rushing in, slamming me. What? You’re going to leave the pain behind?

I don't have this fantasy much anymore, after all these decades of living with pain. But, once in a while, I see myself without pain. I'm out in the world. I have a job again, making friends and socializing.

For a fleeting second, I even see myself -- not the old lady I am now -- but 26 again, before the pain started and ripped away any chance of being “normal.”

Then the final slap in the face: You're 72. Twenty-six is long gone, never to return.

So many articles are written abbot how to cope with pain without drugs: meditation, mindfulness, and relaxation techniques. They may work for some of us. And it's great when they do. But they don't work for me because my trigeminal neuralgia pain is not in my body, it’s only in my face.

It's frustrating when I read these articles, many in medical journals or on medical websites, because invariably they don't have relevance for many of us. The advice telling us to exercise more and to not “give in” to the pain, but to do what hurts in order to help our bodies realize we can move more and do more.

That doesn't help for cranial neuralgias, many of the people with CRPS, or the pain associated with lupus, multiple sclerosis and arachnoiditis. The suggestions are as frustrating to me as the ridiculous idea that I can go on a ship or a safari.

I want the pain to go away. I want to be a “normal” person who can do pretty much whatever I want, whenever I want. Even go on a trip. The pain always tells me: No, ain't gonna happen.

I keep waiting for the articles and doctors to finally say, “Here's what we can do to minimize your pain.” Stopping it entirely may be a step too far to hope for.

But please, medical community, stop with the cliches, especially ones that imply it is my fault that I have chronic pain. If I could exercise or think it away, I surely would.

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.