Gabapentin’s Side Effects May Lead to ‘Prescribing Cascade’

By Pat Anson

Over the years, we’ve published many warnings about gabapentin (Neurontin), a nerve medication that is widely prescribed off-label for pain conditions it was never intended to treat. 

Common side effects from gabapentin include brain fog, dizziness, weight gain, headache, fatigue, and anxiety. The drug has also been linked to a higher risk of dementia.  

According to a new study, those side effects may lead to a “prescribing cascade” in which physicians mistakenly prescribe unnecessary medications to a patient that cause even more side effects. 

The problem is not limited to gabapentin, but includes other gabapentinoids such as pregabalin (Lyrica). Both medications may cause edema – fluid retention and swelling in the legs and feet –  leading doctors to suspect congestive heart failure and prescribe diuretics that can cause kidney injury, light headedness, and falls. 

Researchers with the VA Health Care System and the University of California, San Francisco (UCSF) analyzed the medical records of 120 older veterans, most of whom were male and  long-term users of five or more medications. All had taken gabapentinoids and diuretics, which are often prescribed for edema.  

Although none of the veterans had fluid buildup in the year before they started taking gabapentinoids, only 4 doctors suspected the drugs may be the culprit and just one discontinued the medication.

The vast majority of physicians – 69 in all – never suspected or downplayed the possibility that gabapentinoids may be causing the edema. Since fluid retention is a symptom of congestive heart failure and poor blood circulation, the veterans were put on loop diuretics such as Lasix.

Within two months, 28 veterans had side effects from the new drugs, including poor kidney function, dizziness, and blurred vision, along with low levels of sodium or potassium, which can disrupt critical body functions. Six patients had symptoms so severe they were hospitalized or taken to an emergency department. 

“Gabapentinoids may be prescribed at unnecessarily high doses or for conditions that they may not help,” said Matthew Growdon, MD, an Assistant Professor of Medicine at UCSF and first author of the study in JAMA Network Open. “In these cases, doctors should consider not prescribing these drugs — or giving lower doses to lessen the risk of prescribing cascades and other side effects.” 

One veteran in his 60’s was put on a heavy dose of gabapentin for neuropathy that was induced by chemotherapy for lung cancer. He developed edema and was switched to pregabalin. When the fluid retention didn’t stop, he was put on a diuretic. Within two days he developed light headedness and felt off-balance, and the diuretic was stopped.

Another patient in his 60’s was prescribed gabapentin twice a day for back pain, an off-label use. After two months he had edema and was put on a diuretic. Soon after, he experienced a fall, went to the ER, and was given IV pain medication. The diuretic and polypharmacy are believed to have contributed to the man falling.

The cases highlight how a prescribing cascade with multiple drugs can have serious consequences. 

Gabapentin is often prescribed off-label for migraine, fibromyalgia, cancer pain, postoperative pain, and many other pain conditions for which it is not FDA-approved. Off-label prescribing is legal, but has reached extreme levels for gabapentin. Studies estimate the drug is prescribed off-label up to 95% of the time

“Gabapentinoids are non-opioids, and prescribers associate them with a relatively favorable safety profile,” says senior author Michael Steinman, MD, a Professor of Medicine at UCSF.  “Patients taking them should regularly check in with their doctor to assess whether this is the best treatment for them and consider other options, including non-drug alternatives that might be more appropriate.” 

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

Lupus May Be Caused by Common Virus

By Graham Taylor and Heather Long

Around 5 million people worldwide live with the autoimmune condition lupus. This condition can cause a range of symptoms, including tiredness, fever, joint pain and a characteristic butterfly-shaped rash across the cheeks and nose.

For some people, these symptoms are mild and only flare-up occassionally. But for others, the disease is more severe – with constant symptoms

Although researchers know that lupus is caused by the immune system mistakenly attacking the body’s own tissues and organs, it isn’t entirely clear what triggers this response. But a new study suggests a common virus may play a key role in lupus.

There are two main forms of lupus. Discoid lupus primarily affects the skin, while systemic lupus erythematosus – the most common form of lupus – is more severe and affects the organs.

The immune system’s B cells play a key role in systemic lupus. B cells normally produce proteins called antibodies to target pathogens such as viruses and bacteria. But in people with systemic lupus, some B cells produce antibodies, called autoantibodies, that instead bind to and damage their own organs.

What causes B cells to produce autoantibodies in people with systemic lupus is poorly understood. But this recent study suggests that the trigger may be a common virus.

EBV Infection

Epstein-Barr virus (EBV) infects most people worldwide. Infection with EBV most commonly occurs in childhood, when it usually goes unnoticed. But if a person becomes infected by EBV in adolescence, it can cause infectious mononucleosis (better known as glandular fever).

EBV is a type of herpes virus. These are complex viruses that are able to escape the body’s immune response by hiding inside certain cells.

In these cells, herpes viruses switch off their genes and go silent – like submarines diving beneath the waves to hide from the enemy. This allows herpes viruses to persist throughout a person’s lifetime – occasionally reawakening to spread to new people.

Interestingly, EBV has evolved to hide within the immune system itself, infecting and persisting in a very small number of B cells.

This strategy has proven highly successful for EBV. Over 90% of adults around the world are infected with EBV – meaning the virus is hiding in their immune system’s B cells.

EPSTEIN-BARR (ebv) VIRUS

While most people experience no adverse consequences from their infection, EBV has been linked to certain diseases.

For instance, EBV was the first virus shown to cause cancer. Subsequent research has linked EBV to several different types of cancer – including certain lymphomas and 10% of stomach cancers. Each year, about 200,000 people develop an EBV-associated cancer.

More recently, large epidemiological studies have linked EBV with multiple sclerosis, which is an autoimmune condition. Studies have shown that people with multiple sclerosis are almost always infected with EBV.

Previous research has also suggested that EBV may be involved in systemic lupus. But this new study provides insight into the specific mechanism involved.

To conduct their study, the researchers developed a sensitive test to analyse the genetic material in thousands of B cells isolated from the blood of people with systemic lupus and healthy donors as a control.

They found that EBV was present in around 25 times more B cells in systemic lupus patients compared to participants who didn’t have the condition. In systemic lupus patients, EBV was present in around one in 400 B cells – while in healthy controls it was only present in around one in 10,000 B cells.

This is an interesting finding – though the researchers acknowledge it could potentially be caused by the medicines patients with systemic lupus take to control their illness. These decrease the activity of the immune system which reduces the symptoms of systemic lupus. But these medicines also reduce the immune system’s ability to control EBV infection.

How EBV Causes Autoimmunity

The most important finding from the research was that many of the EBV-infected B cells from systemic lupus patients made autoantibodies that bound to specific proteins. These same proteins are often targeted by autoantibodies in people with systemic lupus. In contrast, EBV-infected B cells from healthy donors did not make these autoantibodies.

To understand the mechanisms involved, the researchers then studied the expression of EBV genes in the infected B cells. Although EBV was generally shown to be in its silent state, some EBV-infected B cells from systemic lupus patients produced the viral protein EBNA2, which reprogrammed the B cells to become more inflammatory. These activated B cells were better able to stimulate responses from other immune cells, including non-EBV infected B cells and T cells.

Together, these observations suggest that EBV may initiate systemic lupus by infecting and reprogramming dormant B cells to become activated. These cells produce autoantibodies that could potentially contribute to the development of systemic lupus. They also appear to recruit additional immune cells able to produce stronger autoimmune responses that are more likely to play a role in systemic lupus development.

These new findings raise the possibility that targeting EBV could form the basis of a new therapy to treat people with systemic lupus. But given these infected B cells also recruit additional immune cells, a broader therapeutic strategy may be needed.

Additional research will also be needed to confirm whether EBV is indeed an essential trigger for the development of systemic lupus. If this is confirmed, preventing EBV infections through vaccination could prevent systemic lupus developing.

Currently there are a number of potential EBV vaccines in development – and two candidates are being tested in large clinical trials. A key requirement for any effective EBV vaccine will be its ability to generate long-term protection against infection. This is because EBV is already widespread in the population. If vaccination only delays infection until later in life, then this could lead to many cases of glandular fever.

The results of these trials are eagerly anticipated, given the potential impact an effective vaccine could have to reduce the numbers of people worldwide that develop lupus, other autoimmune conditions, or cancers caused by EBV.

Graham Taylor, PhD, is an Associate Professor in Viral and Tumour Immunology at the University of Birmingham. The main focus of Graham’s work is to increase our knowledge of the immune system in health and disease and how best to harness the immune system to treat cancer. His research helped lead to a therapeutic cancer vaccine that has undergone testing in several clinical trials. 

Heather Long, PhD, is an Associate Professor in the Department of Immunology and Immunotherapy, at the University of Birmingham. She leads a research team in the fields of viral and cancer immunology, with a long-term focus on understanding T cell control of viruses and virus-associated cancers.

This article originally appeared in The Conversation and is republished with permission.

DEA Plans Further Cuts in Oxycodone Supply  

By Pat Anson

The Drug Enforcement Administration is planning to cut the supply of oxycodone by over 6% in 2026, along with marginal reductions in the supply of hydrocodone, morphine and other Schedule II opioids. 

If the DEA’s plans are finalized after a short public comment period, it would be the 10th consecutive year the opioid supply has been reduced in the United States.

The DEA announced its plans Friday in the Federal Register. Under the Controlled Substances Act (CSA), the agency has broad legal authority to set annual aggregate production quotas (APQs) for drug makers – in effect telling them the amount of Schedule I and Schedule II chemicals and medications they can produce. 

The DEA is planning another round of cuts in the Schedule II opioid supply because it continues to see declines in the “medical usage” of opioids – an average decrease of 10.5% in 2024 alone. 

It’s important to note that medical usage is different from “medical need.” Doctors simply aren’t prescribing as many opioids as they used to, so while the need for pain relief hasn’t changed and may have even increased due a spike in rates of chronic pain, the number of prescriptions written for opioids has declined. 

DEA expects that trend to continue, based in part on data from IQVIA, a private company that tracks prescription drug use. The agency is also seeing fewer requests from drug manufacturers to make oxycodone.

“DEA projects that the medical usage of these controlled substances will continue to decline in 2026 based on a review of domestic usage data from IQVIA,” DEA said in its Federal Register notice. “Additionally, DEA has observed a significant decline in requests for product development quotas to support manufacturing towards FDA approval of drug products containing oxycodone.” 

DEA Opioid Production Cuts Planned for 2026

  • Oxycodone          6.24% decrease

  • Morphine             0.559% decrease

  • Hydrocodone       0.529% decrease

  • Hydromorphone  0.109% decrease

  • Fentanyl              0.014% decrease

  • Codeine               0.002% decrease

From year-to-year, the cuts may not appear significant. But over the past decade, there has been an historic decline in the nation’s opioid supply. If its current plan is adopted, DEA will have cut the supply of hydrocodone by 72.9% and oxycodone by 70.6% since 2014.

Some of the decline in “medical usage” is driven by scarcity. For example, Endo Pharmaceuticals recently informed the FDA it discontinued production of 2.5, 5, 7.5 and 10 mg Percocet (oxycodone/acetaminophen) tablets. Major Pharmaceuticals stopped making oxycodone/acetaminophen tablets a few months ago. And Teva Pharmaceuticals, a large generic drug maker, stopped making immediate-release oxycodone in 2023.  

The FDA does not currently list oxycodone products on its drug shortage database, but the American Society of Health-System Pharmacists (ASHP) has since 2023. Limited supplies of oxycodone are available from some manufacturers, according to ASHP, while others have the medications on back order.

Hydrocodone/acetaminophen tablets have also been on the ASHP’s shortage list (but not on the FDA’s) since 2023. Major and Camber Pharmaceuticals have both stopped making them.

Health Canada reported a nationwide shortage of oxycodone/acetaminophen combinations over the summer, a shortage that persists today but is expected to resolve soon.

Why would the DEA be reducing production quotas for opioids that are already in short supply?

DEA sets its APQs after consulting with states willing to share their prescription drug data, as well as federal agencies like Health and Human Services and the Food and Drug Administration. 

DEA also asked for input from the Centers for Disease Control and Prevention, an agency in turmoil after several months of layoffs, budget cuts and leadership changes. A response to that request “was inadvertently delayed” at CDC, but DEA says it will take it under consideration when or if it ever arrives. 

“DEA remains committed to monitoring drug shortages, limiting their impact, and resolving them as quickly as possible. DEA continues to seek additional information that will assist in accurately forecasting domestic medical usage and export requirements of schedule I or II substances,” DEA said.

Unlike previous years, when there was a 30-day period for public comments on the DEA’s quota proposal, the agency is only allowing about two weeks. You can leave a comment here, but it must be posted no later than December 15. DEA did not explain why it was reducing the amount of time the public can comment. 

7 Gift Ideas for People with Chronic Illness

By Crystal Lindell

Black Friday marks the unofficial start of the holiday shopping season, and that means hunting for the perfect gifts for those we love.

Below are some gift ideas for loved ones with chronic pain and illness. It’s a gift list you can trust because it’s all based on my own experiences of living with daily pain myself for over a decade.

All of these items also make a great addition to your own holiday wish lists, if you have chronic condition yourself. 

1. Comfy Clothes

The #1 must-have fashion item for people with chronic pain is any clothes that are super comfortable. 

When you have chronic pain, clothing comfort just takes precedent over the latest trends. 

I personally have re-purchased these comfy pants more than 7 times over the last few years. I love how soft they are, and I love that they have pockets! 

But any comfy clothes, from sweat shirts to pajama pants, make a great gift for those with chronic pain. 

Find Women’s Jogger Pants on Amazon 

2. Heated Blanket

There’s nothing better than getting under a cozy heated blanket when you’re dealing with chronic pain. Even if someone already owns one, there’s always a need for one more! 

This heated blanket is my favorite and not only do I own two myself, I’ve also purchased it as a gift for loved ones over the years. And all of them always come back to tell me how much they love it! 

Find this Heated Blanket on Amazon

3. Reminders of Your Love

Little trinkets like a keychain can be a great way to give a constant reminder of your love for someone. Every time they see it, they can think of how much you care about them. 

This keychain features the phrase, “May you always have one more spoon.” It’s a reference to the Spoon Theory, which uses spoons to illustrate the limited energy that people with chronic pain and illness often have. 

It doesn’t have to be a key chain though. A special coffee mug or a bracelet can also make great gifts! 

Find the Spoon Theory keychain on Amazon 

4. Lego

Of course, it doesn’t have to be Lego specifically, but any sort of home-based hobby activities are great for people with chronic pain. 

I personally love this Lego Cat because I’m a huge cat person as well as a huge Lego fan. 

But you can also get your loved ones art supplies, crafting tools, or any other projects they can work on at home.

And bonus points if they can do it from the couch on bad pain days. 

Find the Lego Tuxedo Cat on Amazon 

5. A Good Book

Some days, a pain flare means I don’t have the energy to do anything other than read a book. So having good ones around that I know a loved one recommends is always welcome! 

I recently read The Frozen River by Arial Lawhon, and I really enjoyed the cozy winter setting and completely immersive 1700s plot. 

But you can really buy any book that you’d recommend to share as a gift with your loved ones. 

Also be sure to check out PNN’s holiday reading guide, which has books to help you better understand and treat many chronic pain conditions.  

Find The Frozen River on Amazon 

6. Bread Machine

While a bread machine may not seem like a gift typically associated with chronic pain, it’s actually perfect.

A good bread machine makes it super easy to whip up homemade bread, even when you’re also dealing with a pain flare. You just toss the ingredients in, hit start and presto! A perfect loaf of homemade bread!

It’s also great for anyone on a restrictive diet, since you can easily customize the ingredients. There’s even a setting for a gluten-free loaf! 

Find the Bread Machine on Amazon 

7. Gift Cards

Of course, when in doubt, it’s always a good idea to go with a gift card, especially if you’re shopping at the last minute — because the cards can be instantly delivered via text. 

That way your loved one is guaranteed to get the perfect holiday gift, because they pick it out themselves!

Happy shopping this holiday season!

Find Gift Cards on Amazon

We hope you have happy holidays, and many low pain days in the year ahead! 

PNN makes a small commission, at not additional cost to you, on items purchased through Amazon. 

A Holiday Reading Guide for People Living with Chronic Pain

By Pat Anson

Is kratom really as dangerous as public health officials say it is? What foods can help reduce pain and inflammation? Why do some people get Long Haul Covid and others don’t? How can I manage pain flares from Ehlers-Danlos syndrome? What is percutaneous hydrotomy and why is it growing in popularity with injured athletes?

The answers to these and other questions can be found in PNN’s annual holiday reading guide. If you live with chronic pain and illness or have a friend or family member who does, here are 12 books that would make great gifts over the holidays. Or you can “gift” one to yourself. Click on the book cover or title to see price and ordering information.

The Essentials of Ehlers-Danlos Syndrome

This book is intended to help people understand and manage Ehlers-Danlos syndrome (EDS), a genetic and painful disorder that presents as a confusing set of symptoms that are often misdiagnosed. Topics covered include the 7 sub-types of EDS, what specialists to see, and how to create a personalized care plan to manage pain flares and fatigue.

Kratom: Facts, Myths, and Cultural Insights

This is one in a series of books by Adrian Colewood that seeks to present a balanced and neutral view on kratom, a controversial supplement used by millions to relieve pain, anxiety, depression and withdrawal. With kratom facing new regulations and outright bans due to its opioid-like effects, the book explores the myths and misinformation about a medicinal plant that’s been used for centuries in southeast Asia.

Handbook for Newly Diagnosed Cases of Adhesive Arachnoiditis

This second edition of Dr. Forest Tennant’s book for new cases of Adhesive Arachnoiditis (AA) explores the treatments that can reduce the symptoms of this debilitating spinal nerve disease. Left untreated, AA can result in intractable pain, a bed-bound state, and premature death. This handbook summarizes Dr. Tennant’s 3-step protocol to suppress inflammation and autoimmunity, regenerate damaged tissue, and control pain caused by AA.

Eat to Heal: Unlock the Healing Power of Food

After years of suffering from chronic migraine, fatigue and cancer pain, Dr. Joseph Jacobs turned to nutrition, developing the Advanced Soft Tissue Release (ASTR) diet to reduce inflammation, relieve pain and restore energy. In this book, he shares how eating the right foods helped him beat chronic pain from the inside out, while debunking the myths of so-called “healthy diets” that have left millions of people chronically sick and fatigued.

The Comprehensive Guide to Ibuprofen

Aldrin Gomes, PhD, and his team of researchers at UC Davis look at the benefits and risks of ibuprofen, one of the world’s most widely used pain relievers. Like many NSAIDs, ibuprofen increases the risk of heart attack, stroke and stomach ulcers — even at regular doses — and may interact with hundreds of medications. Studies suggest ibuprofen may also have some surprising health benefits, such as lowering the risk of dementia.

It Doesn’t Have to Hurt: Your Smart Guide to a Pain-Free Life

CNN medical correspondent Dr. Sanjay Gupta is a neurosurgeon by trade who believes all pain starts in the brain, and chronic pain “comes with baggage attached.” Gupta is not a fan of opioid medication, and thinks the body’s own pain relief system can be primed through meditation, sleep, nutrition, acupuncture and physical therapy such as foam rolling. He calls pain “the most mysterious of all human sensations.”

Hip Pain Relief For Seniors

This book is designed for older adults who want to overcome hip pain and limited mobility without surgery or medication. Simple and gentle exercises can be done at home to regain flexibility, strength and movement. These “senior-friendly routines” will help you stay active and independent, including older adults recovering from hip replacement or arthritis.

Secrets to Long Haul Viral Recovery

Author Michael Alcock is a “long-hauler” from Covid-19 and the Epstein-Barr virus, who spent a decade researching why some people are more prone to long-haul viral infections, while others recover easily. This book explains how to recover holistically from viral infections like long Covid by strengthening the immune system through better nutrition, vitamins and supplements.

The Complex PTSD Workbook for Self-Healing

Has chronic pain or a chronic illness left you exhausted — physically and emotionally? Do you live in dread of another pain flare or sleepless night? Alex Carter wrote this self-help handbook to guide you on a 6-week action plan to overcome Post Traumatic Stress Disorder (PTSD) with practical ways to help quiet your mind and nervous system.

The Headache: The Science of a Most Confounding Affliction

Over 3 billion people worldwide suffer from a headache disorder, including author Tom Zeller Jr., who suffers from cluster headaches. Zeller wrote this book to better understand what causes migraines and headaches, and why there are few effective treatments for such a common condition. Zeller looks at the inner workings of the human nervous system and provides a vivid account of the disabling pain that headache sufferers endure.  

Complex Regional Pain Syndrome

Complex Regional Pain Syndrome (CRPS) is a debilitating chronic nerve disease that is usually caused by trauma and can strike any part of the body. This book, edited by Drs. Lynn Webster and Jijun Xu, is part of the "What Do I Do Now? Pain Medicine" series. It looks at 11 clinical cases of CRPS and how they were treated with conventional analgesics and novel therapies, including neuromodulation and ketamine infusions.

Stopping Pain: A Simple, Revolutionary Way to Stop Chronic Pain

Chances are you’ve never heard of percutaneous hydrotomy, a minimally invasive regenerative treatment in which a sterile saline solution is injected into the body to relieve musculoskeletal pain and “flush out” inflammatory substances. Percutaneous hydrotomy has been used in Europe for 30 years and is gaining popularity with amateur and professional athletes who want to stop pain, heal nagging injuries, and boost performance.

These and other books about living with chronic pain and illness can be found in PNN’s Suggested Reading page.  PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

A Beginner’s Guide to Using Kratom for Pain Relief

By Crystal Lindell

Whenever I meet someone who’s having trouble managing their chronic pain, I always suggest that they look into kratom. However, many soon realize that there’s not much trustworthy information out there about what kratom is and how to use it. 

I’ve been taking kratom for my own chronic pain since 2018, and I have found that it’s the only thing sold over the counter that actually helps me. 

Below is a look at my experiences with it, and some tips to help if you’re new to the idea of taking kratom for chronic pain. 

Also, I want to make clear that this column is not sponsored, and you’ll notice that there are no links to any specific kratom products or companies. There is a lot of spammy content in articles about kratom, but this isn’t one of them.

What Is Kratom?

The formal name for kratom is “Mitragyna speciosa.” It’s a tropical tree that’s native to southeast Asia, and belongs to the same botanical family as coffee. 

Kratom has been used for centuries in Asia as a natural stimulant and pain reliever, but only in the past decade has it become widely available in the United States

To create the powder that’s usually sold in smoke shops, gas stations and online, kratom leaves are dried and ground up into a fine powder. 

There are three basic strains of kratom, and each one has different effects. 

There is a white strain, which I have found acts as a stimulant or energy booster. The red strain seems more like a mood booster that helps with pain. And then there’s a green strain, which is seen as more of the middle point between the two. 

You’ll also find products labeled as “gold” and “black” and those claim to be stronger versions of kratom, although I haven’t always found that to be the case. 

I personally use a mix of the strains, which is commonly referred to as a "trainwreck" mix. 

Is Kratom Legal?

Laws vary by state, county, and even cities in the United States. So it’s best to check your local laws before purchasing kratom. 

In June, the FDA sent warning letters to 7 kratom vendors about illegally marketing their products as dietary supplements. The letters were specifically in regards to an alkaloid in kratom called 7-hydroxymitragynine -- known as 7-OH -- which relieves pain and increases energy.

The FDA said it would try to get 7-OH classified as an illegal controlled substance, falsely claiming it was an opioid. While 7-OH occurs naturally in kratom, it is present only trace amounts.

To boost its potency, some vendors are selling gummies, tablets and extracts with concentrated levels of 7-OH, which the FDA says “may be dangerous.” For more information about 7-OH, check out this recent column I wrote about that product.

Although some states and cities have already banned 7-OH, the natural leaf powder is widely available (and still legal) in most U.S. states, as long as no medical claims are made about it. 

Is Kratom Dangerous?

It’s rare for someone to have an adverse reaction to natural kratom leaf, which is the form I take. However, people who consumed the concentrated extracts have been hospitalized or experienced overdoses. In most cases, they also consumed alcohol and other substances.

Recently, former CDC Commissioner Robert Redfield, MD, talked about a 2024 FDA-funded study, the final results of which have never been published. He said they found that kratom has low abuse potential.

“In 2024, the FDA completed a single ascending-dose clinical trial examining ground kratom leaf in experienced users. The results were illuminating: participants experienced no serious adverse events at doses up to 12 grams, with side effects limited to mild nausea and pupil constriction. Crucially, subjective ‘drug liking’ scores never reached statistical significance compared to placebo, indicating low abuse potential for natural leaf.”

According to the American Kratom Association, FDA researchers were "profoundly disappointed” at the lack of adverse events associated with kratom, as its contradicts the agency’s long-standing opposition to it. That’s supposedly why the study’s findings have not been formally released.

Does Kratom Relieve Pain?

I think kratom really works, at least it does for my chronic pain. I can tell there’s a difference in my pain level shortly after I take a dose. My partner also swears by kratom as an effective treatment for chronic pain.

A 2016 PNN survey of over 6,000 kratom users found that 97% thought it was very or somewhat effective in treating their pain, depression, anxiety and other medical conditions. Over 98% said that kratom wasn’t harmful or dangerous.  

I always say that the best way to know that kratom actually works is when people try to regulate or ban it.

How Do You Take Kratom?

I mostly use the powder form of kratom. It comes in a bag, and it’s usually sold by weight.

I take half a spoonful of the powder, put it under my tongue, and then wash it down with a non-carbonated flavored beverage like juice or Gatorade. The powder is gritty and tastes bad, so you’ll probably need something to wash it down quickly with. To improve the taste, the powder can be mixed into a beverage directly.

You can also buy the powder in capsules, which are easier to consume. I personally find that capsules give me heartburn, so I tend to avoid them. 

There are also edible versions of kratom on the market, such as gummies, chocolates and even seltzers. I find those take longer to kick in, but they tend to offer a more even effect. However, they are more expensive than the raw powder, so I don’t buy them very often. 

If you do try kratom, I recommend using an extremely small dose to start with and, if possible, purchasing it from a smoke shop where employees can help you navigate your options. 

Overall, kratom has the potential to help a lot of people. But everyone is different, so your experience with the substance may vary. My hope is that people who could benefit from using kratom will feel more confident about trying it after learning more about it. 

A Pained Life: Should Doctors Be More Curious?

By Carol Levy

In my last column, I wrote about doctors needing more empathy. I feel it’s important for them to understand and relate to whatever their patients are experiencing.

I have been sick for a few months, a jaw infection that keeps coming back. The left side of my face, the side with the trigeminal neuralgia, is where the swelling is located. 

The doctors all seem afraid to try and figure it out: “Well, it's probably related to the issues you already have there.”

If that were true, the swelling wouldn't be new. But it is, and that doesn't seem to faze them.

My family doctor referred me to a bunch of different specialists. Some actually touched the area of swelling, but other than a cursory heart and lung check, they did nothing but order blood tests, an MRI and CAT scan. All were negative. 

Then they threw antibiotics at it. That too didn’t help. Maybe that means they should look into it further, maybe by examining me? It doesn't happen. I merely get, in one form or another, “I haven't a clue. Sorry I can't be of more help.”

All of them were nice to me. Some even showed empathy. That made me feel heard. And yet, I wasn't heard. Had I been, they would have done more than the basic exam and tests. 

I thought a connection, through empathy, would enable more trust in doctors, more acceptance of a diagnosis or lack of one. 

It turns out, it’s not a question of empathy, but a lack of curiosity that makes me doubt their medical ability. Is a lack of curiosity the same as indifference? Do they just not care?

So many of us have experienced this when we present to a doctor with chronic pain. First of all, pain is wholly subjective. They have to choose to believe us (or not) when we say we are in pain. Then they have to make an effort to find the cause. That almost requires them to do a full exam, to show curiosity about our bodies, and therefore our pain.

It seems to me, if someone decides to go to medical school, curiosity has to be a motivator. Curiosity about how our bodies work, what happens when they don't, and what causes them not to work as they should.

What happens to that curiosity? Do doctors become jaded? Does the thought process go something like this: “I don't need to do an exam. Blood work and x-rays will tell me, and if they don't, that's the way it goes.”

I find I have to ask my doctor if it could be this or that. I have to suggest that he order an x-ray. It seems to be my job to come up with ideas. Since there is an infection, maybe there is an underlying disorder? 

Sometimes he merely shrugs.  Other times, he goes with my suggestions.

Maybe that makes it a partnership, but it’s one based on my work and thoughts, not his. And it’s all based on my curiosity about what is making me sick. 

Somehow, that feels wrong. Because, after all, isn’t being curious enough to figure out what is wrong the doctor's job?

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.  

Does Mindfulness Really Help with Chronic Pain?

By Neen Monty

“Mindfulness” is one of those words that’s been stretched so far it’s almost lost its meaning. We’re told it will calm our nerves, ease our pain, and maybe even transform our lives. 

But what is mindfulness, really? And what can it actually do for people living with chronic pain?

The popular definition goes something like this: Mindfulness is the practice of focusing your awareness on the present moment, without judgment.

Does that make sense to you? It didn’t make sense to me the first time I heard it. It sounds so simple… but it’s not so simple to do.

Most people think mindfulness is meditation. It’s not. Mindfulness is a state of awareness, a way of relating to your thoughts and sensations, while meditation is a tool that helps you develop that state. Meditation is how we practice mindfulness, the training ground for the skill of self-awareness.

Clear? As mud…

Okay, let me try again. At its core, mindfulness rests on two ideas:

  1. Paying attention to the present moment.

  2. Doing so without judgment.

That second part is the hardest. It can take a lot of practice. But in practical terms, living mindfully is living in the present moment. It’s not wasting time worrying about a future that may never happen, or dwelling on a past that can’t be changed.

The Difference Between Pain and Suffering

Let’s use pain as an example. Being mindful doesn’t mean ignoring pain or pretending it’s not there. It means noticing it: “I feel pain right now” and stopping there.

What we usually do next is the problem: “Oh no, it’s back. The pain is so bad! It’s going to get worse. I can’t take this anymore.”

Those thoughts are the suffering part. They layer emotion, fear, and meaning on top of the physical sensation of pain.

Mindfulness helps peel that layer away. Pain still hurts, but without the extra story, the extra worry, the panic, the hopelessness and the emotional response. It’s just pain.

Pain then becomes something we can observe, without emotion, rather than something that swallows us whole. This distinction isn’t just philosophical. Brain imaging studies show that mindfulness changes the way we process both thoughts and sensations.

Meditation strengthens brain regions that regulate attention and emotion, such as the prefrontal cortex and anterior cingulate cortex, while reducing reactivity in the amygdala, the brain’s alarm system. Other reviews confirm that meditation produces measurable neurobiological changes that are associated with greater emotional stability and self-regulation.

Over time, meditation helps the mind become less reactive. We learn to notice sensations, thoughts, and emotions without immediately trying to fight or fix them. 

Instead of launching into fight or flight, we remain calm and in control. Meditation, in that sense, is kind of the laboratory in which mindfulness is trained.

The Limits of Mindfulness

Does mindfulness cure pain? No. It does not.

Systematic reviews and meta-analyses find that mindfulness training has only small effects on pain intensity. What it does reduce is distress — the anxiety, fear, and emotional turmoil that often surrounds chronic pain.

That distinction matters. Mindfulness was originally designed as a treatment for stress and anxiety. And therefore, its benefits for pain are more indirect. It helps people who are fearful of pain or overwhelmed by it, to regulate their emotions and cope better.

But, if you’re already calm and accepted your pain without fear, mindfulness won’t make the pain go away. It won’t have much effect at all on your pain.

Most importantly, mindfulness is not a treatment for severe pain. You cannot be mindful and you cannot meditate, when you’re in severe pain. Mindfulness is not an intervention for 8 or 9/10 pain. That’s pure cruelty. I would even call that medical negligence.

Mindfulness is a treatment for fear and anxiety in the setting of chronic pain. In that sense, mindfulness may be helpful for someone in mild to moderate pain, where there is a lot of negative emotion surrounding that pain – such as fear, anxiety and catastrophising.

Mindfulness is a psychological tool, a treatment for fear and anxiety that’s been repurposed for pain. 

And often oversold as something it’s not.

Why Mindfulness Is Still Worth Trying

Even within those limits, I still believe mindful living is the best way for me to live. It doesn’t make my pain stop. My pain is caused by disease, pathology and biology, not by anxiety or fear.

Mindfulness does make my days quieter. It keeps me from being dragged into fear or frustration. I don’t worry about the future and don’t dwell on the past. Mindful living keeps me grounded. In the present moment. Because that’s where life is happening – the here and now.

That’s what mindfulness is, living in the present moment.

Mindfulness won’t fix what’s broken in the body. Mindfulness cannot fix pathology. But it can help restore what pain often breaks in the mind: calmness, control, and your sense of peace in the middle of chaos.

And sometimes, that’s enough.

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.”

5 Tips for Surviving the Holiday Season with Chronic Pain

By Crystal Lindell

The holiday season kicks off this week, but for people with chronic pain, this time of year can be difficult to navigate. 

Below are some tips for surviving the season while also dealing with chronic pain and illness. You can trust that they actually work, because all of them are gleaned from my own experiences of surviving the holidays while dealing with chronic pain myself.  

1. Check Your Pharmacy Schedule

A lot of pharmacies are closed on holidays or they close early, so if you have refills scheduled on those days, it’s best to plan ahead. Make sure you know when they are open so you can get your medications.

If you have a refill scheduled for a day when your pharmacy is closed, you may want to ask your doctor if they can send in any refill prescriptions the day before the holiday.

In my experience, a lot of doctors are surprisingly accommodating about this. Of course, if they refuse, you can ration out your medication a little so that you have enough to cover the holiday.  

2. Embrace Pre-Made Food

One of the most draining tasks over the holiday season is cooking. So, I highly recommend embracing pre-made food options.

Whether that means grabbing pre-made sides from the grocery store or ordering a fully prepared holiday feast from a local restaurant, outsourcing the labor of cooking can be a huge help if you have chronic pain.

Obviously though, buying pre-made food does usually cost more than cooking from scratch, but if you’re really in a pinch, I do have one more suggestion: Order takeout.

Fast food is usually inexpensive and quick, which means you’ll have more time and energy to actually enjoy the holiday season with loved ones.

Later, when you look back on those memories, it won’t matter if dinner was tacos or chicken wings, as long as you were all together. 

3. Include Rest Days in Your Holiday Plans

If you have multiple family functions to attend, try your best to plan days of rest into your schedule. 

Put “Rest” on your calendar as though it were any other required activity. And if it conflicts with other events, don’t be afraid to say that you just can’t make it. 

I know that saying “no” is easier to suggest than actually accomplish, especially when it comes to family. So if you do get pressured into doing multiple events in a row, just do your best to schedule an equal number of guilt-free rest days afterward. Emphasis on the “guilt-free.”

For example, if you have plans on Christmas Eve and Christmas Day, try to use Dec. 26 and Dec. 27 to recover. And I don’t mean, spend those days cleaning up, I mean actual rest.

When you’re dealing with chronic illness, providing your body with rest is just as important as providing food. 

4. Wear Compression Socks on Long Trips

Swollen feet and ankles are a common side effect of both chronic illness and many prescription medications.

So, if you’re traveling this holiday season — whether it’s a three-hour flight or a one-hour drive — I highly recommend wearing compression socks during your trip. Aside from preventing swelling, they can also help prevent dangerous blood clots.

5. Use Gift Bags

Wrapping gifts is a lot more time consuming than people usually like to admit, so do yourself a favor and just use gift bags instead. And save the ones you get, so you can reuse them next year.

Gift bags don’t have to be expensive either. If you head over to Dollar Tree, you can find a wide assortment of gift bags for just $1.25 each. 

The holiday season can easily turn into a series of stressors and pain triggers, but if you plan ahead and allow yourself some grace, you still can enjoy it — even with chronic pain. 

New Autism Guidance on CDC Website Angers Health Experts 

By Arthur Allen, KFF Health News

The rewriting of a page on the CDC’s website to assert the false claim that vaccines may cause autism sparked a torrent of anger and anguish from doctors, scientists, and parents who say Health and Human Services Secretary Robert F. Kennedy Jr. is wrecking the credibility of an agency they’ve long relied on for unbiased scientific evidence.

Many scientists and public health officials fear that the Centers for Disease Control and Prevention’s website, which now baselessly claims that health authorities previously ignored evidence of a vaccine-autism link, foreshadows a larger, dangerous attack on childhood vaccination.

“This isn’t over,” said Helen Tager-Flusberg, a professor emerita of psychology and brain science at Boston University. She noted that Kennedy hired several longtime anti-vaccine activists and researchers to review vaccine safety at the CDC. Their study is due soon, she said.

“They’re massaging the data, and the outcome is going to be, ‘We will show you that vaccines do cause autism,’” said Tager-Flusberg, who leads an advocacy group of more than 320 autism scientists concerned about Kennedy’s actions.

Kennedy’s handpicked vaccine advisory committee is set to meet next month to discuss whether to abandon recommendations that babies receive a dose of the hepatitis B vaccine within hours of birth and make other changes to the CDC-approved vaccination schedule. 

Kennedy has claimed — falsely, scientists say — that vaccine ingredients cause conditions like asthma and peanut allergies, in addition to autism.

The revised CDC webpage will be used to support efforts to ditch most childhood vaccines, predicts Angela Rasmussen, a virologist at the University of Saskatchewan and co-editor-in-chief of the journal Vaccine. 

“It will be cited as evidence, even though it’s completely invented,” she said.

The website was altered by HHS, according to one CDC official who spoke on condition of anonymity. The CDC’s developmental disability group was not asked for input on the website changes, said Abigail Tighe, executive director of the National Public Health Coalition, a group that includes current and former staffers at the CDC and HHS.

FROM CDC WEBSITE

Scientists ridiculed the site’s declaration that studies “have not ruled out the possibility that infant vaccines cause autism.” While upward of 25 large studies have shown no link between vaccines and autism, it is scientifically impossible to prove a negative, said David Mandell, director of the Center for Autism Research at Children’s Hospital of Philadelphia.

The webpage’s new statement that “studies supporting a link have been ignored by health authorities” apparently refers to work by vaccine opponent David Geier and his father, Mark, who died in March, Mandell said. 

Their research has been widely repudiated and even ridiculed. David Geier is one of the outside experts Kennedy hired to review safety data at the CDC.

Asked for evidence that scientists had suppressed studies showing a link, HHS spokesperson Andrew Nixon pointed to older reports, some of which called for more study of a possible link. Asked for a specific study showing a link, Nixon did not respond.

‘Using CDC to Spread Lies’

Infectious disease experts, pediatricians, and public health officials condemned the alteration of the CDC website. Although Kennedy has made no secret of his disdain for established science, the change came as a gut punch because the CDC has always dealt in unbiased scientific information, they said.

Kennedy and his “nihilistic Dark Age compatriots have transformed the CDC into an organ of anti-vaccine propaganda,” said Amesh Adalja, a senior scholar at the Johns Hopkins Center for Health Security.

“On the one hand, it’s not surprising,” said Sean O’Leary, a professor of pediatrics and infectious disease at the University of Colorado. “On the other hand, it’s an inflection point, where they are clearly using the CDC as an apparatus to spread lies.”

“The CDC website has been lobotomized,” Atul Gawande, an author and a surgeon at Brigham and Women’s Hospital, told KFF Health News.

CDC “is now a zombie organization,” said Demetre Daskalakis, former director of the National Center for Immunization and Respiratory Diseases at the CDC. The agency has lost about a third of its staff this year. Entire divisions have been gutted and its leadership fired or forced to resign.

Kennedy has been “going from evidence-based decision-making to decision-based evidence making,” Daniel Jernigan, former director of the CDC’s National Center for Emerging and Zoonotic Infectious Diseases, said at a news briefing Nov. 19. With Kennedy and his team, terminology including “radical transparency” and “gold-standard science” has been “turned on its head,” he said.

Sen. Cassidy Goes Quiet

The new webpage seemed to openly taunt Sen. Bill Cassidy (R-La.), a physician who chairs the Senate Health, Education, Labor, and Pensions Committee. Cassidy cast the tie-breaking vote in committee for Kennedy’s confirmation after saying he had secured an agreement that the longtime anti-vaccine activist wouldn’t make significant changes to the CDC’s vaccine policy once in office.

The agreement included a promise, he said, that the CDC would not remove statements on its website stating that vaccines do not cause autism.

The new autism page is still headed with the statement “Vaccines do not cause Autism,” but with an asterisk linked to a notice that the phrase was retained on the site only “due to an agreement” with Cassidy. The rest of the page contradicts the header.

“What Kennedy has done to the CDC’s website and to the American people makes Sen. Cassidy into a total and absolute fool,” said Mark Rosenberg, a former CDC official and assistant surgeon general.

On Nov. 19 at the Capitol, before the edits were made to the CDC website, Cassidy answered several unrelated questions from reporters but ended the conversation when he was asked about the possibility Kennedy’s Advisory Committee on Immunization Practices might recommend against a newborn dose of the hepatitis B vaccine.

“I got to go in,” he said, before walking into a hearing room without responding.

Cassidy has expressed dismay about the vaccine advisory committee’s actions but has avoided criticizing Kennedy directly or acknowledging that the secretary has breached commitments he made before his confirmation vote. Cassidy has said Kennedy also promised to maintain the childhood immunization schedule before being confirmed.

The senator criticized the CDC website edits in a Nov. 20 post on X, although he did not mention Kennedy.

“What parents need to hear right now is vaccines for measles, polio, hepatitis B and other childhood diseases are safe and effective and will not cause autism,” he said in the post. “Any statement to the contrary is wrong, irresponsible, and actively makes Americans sicker.”

Leading autism research and support groups, including the Autism Science Foundation, the Autism Society of America, and the Autism Self Advocacy Network, issued statements condemning the website.

“The CDC’s web page used to be about how vaccines do not cause autism. Yesterday, they changed it,” ASAN said in a statement. “It says that there is some proof that vaccines might cause autism. It says that people in charge of public health have been ignoring this proof. These are lies.”

What the Research Shows

Parents often notice symptoms of autism in a child’s second year, which happens to follow multiple vaccinations. “That is the natural history of autism symptoms,” said Tager-Flusberg. “But in their minds, they had the perfect child who suddenly has been taken from them, and they are looking for an external reason.”

When speculation about a link between autism and the measles, mumps, and rubella vaccine or vaccines containing the mercury-based preservative thimerosal surfaced around 2000, “scientists didn’t dismiss them out of hand,” said Tager-Flusberg, who has researched autism since the 1970s. “We were shocked, and we felt the important thing to do was to figure out how to quickly investigate.”

Since then, studies have clearly established that autism occurs as a result of genetics or fetal development. Although knowledge gaps persist, studies have shown that premature birth, older parents, viral infections, and the use of certain drugs during pregnancy — though not Tylenol, evidence so far indicates — are linked to increased autism risk.

But other than the reams of data showing the health risks of smoking, there are few examples of science more definitive than the many worldwide studies that “have failed to demonstrate that vaccines cause autism,” said Bruce Gellin, former director of the National Vaccine Program Office.

The edits to the CDC website and other actions by Kennedy’s HHS will shake confidence in vaccines and lead to more disease, said Jesse Goodman, a former FDA chief scientist and now a professor at Georgetown University.

This opinion was echoed by Alison Singer, the mother of an autistic adult and a co-founder of the Autism Science Foundation. “If you’re a new mom and not aware of the last 30 years of research, you might say, ‘The government says we need to study whether vaccines cause autism. Maybe I’ll wait and not vaccinate until we know,’” she said.

The CDC website misleads parents, puts children at risk, and draws resources away from promising leads, said Paul Offit, director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. “Kennedy thinks he’s helping children with autism, but he’s doing the opposite.”

Many critics say their only hope is that cracks in President Donald Trump’s governing coalition could lead to a turn away from Kennedy, whose team has reportedly tangled with some White House officials as well as Republican senators.

Polling has also shown that much of the American public distrusts Kennedy and does not consider him a health authority, and Trump’s own approval rating has sunk dramatically since he returned to the White House.

But anti-vaccine activists applauded the revised CDC webpage. 

“Finally, the CDC is beginning to acknowledge the truth about this condition that affects millions,” Mary Holland, CEO of Children’s Health Defense, the advocacy group Kennedy founded and led before entering politics, told Fox News Digital.

“The truth is there is no evidence, no science behind the claim vaccines do not cause autism.”

Céline Gounder, Amanda Seitz, and Amy Maxmen contributed to this report. KFF Health News is a national newsroom that produces in-depth journalism about health issues.

The PAIN GAME: How Pain Medicine Was Criminalized

By Dr. Lynn Webster

“What happened?”

It’s the most basic question you can ask about the opioid crisis. Yet for more than two decades, most of the answers the public has been given have been pre-packaged: Greedy drug companies, corrupt “pill mill” doctors, desperate patients, and a heroic legal system swooping in to clean up the mess.

What almost no one has seen is what was happening inside those prosecutions as they unfolded; in the homes of the accused physicians, in the war rooms of their defense teams, in the quiet panic of the patients who depended on their care.

That’s what makes The PAIN GAME so extraordinary.

More than twenty years ago, filmmaker Erica Modugno Dagher did something journalists almost never do: she embedded herself at the center of an unfolding legal, medical, and political firestorm and started asking, with a genuinely open mind, “What happened?” 

Then she kept the camera rolling for two decades.

Writer and editor Amy Bianco, who now authors The PAIN GAME on Substack, has taken that trove of footage, documents and human stories, and begun unpacking how the legal system — especially the DEA and federal prosecutors — systematically confused pain medicine with crime, and how that confusion still harms patients today.

If you want to understand why doctors are afraid to treat pain, and why patients are still paying the price, I’d urge you to start with Bianco’s first episode. It’s one of the most important stories you’ve never heard.

Targeting Doctors

The origin of The PAIN GAME runs through the work of political scientist Ronald Libby, PhD, whose 2007 book The Criminalization of Medicine: America’s War on Doctors” documented a wave of prosecutions in which physicians were recast as criminals. 

Instead of tackling the hard work of healthcare reform or rational drug policy, federal and state authorities went after doctors who billed heavily to Medicare and Medicaid, especially those caring for poor and disabled patients with complex pain.

According to Libby, the logic was simple and brutal:

  • High billing = “fraud and abuse”

  • High opioid prescribing = “drug dealing”

Under that lens, the DEA and U.S. attorneys didn’t need to understand the nuances of chronic pain, palliative care, or Ehlers–Danlos syndrome. They just needed numbers: prescription counts, morphine milligram equivalents, and outlier billing profiles. 

The more a physician’s practice reflected the grim reality of caring for very sick people, the more suspicious they looked on a spreadsheet.

By the early 2000s, news outlets were saturated with stories of “pill mills” flooding communities with OxyContin. Those stories had a ready-made villain and an easy fix: prosecute the doctor, shut down the clinic, and declare victory.

But as The PAIN GAME shows from the inside, it didn’t add up.

A Camera Inside the Crackdown

Because Libby had earned the trust of embattled clinicians, that trust extended to Erica. She was invited into defendants’ homes, their lawyers’ strategy sessions, back-hall conversations at medical and legal conferences, and even the corridors of Congress.

Crucially, she went in without an agenda. There was no narrative she needed to confirm and no “pill mill” caricature she had to deliver. She simply watched and listened as doctors, patients, lawyers, and advocates tried to understand why the government had suddenly turned medicine into a crime scene. That is what makes the series riveting.

Amy’s first episode on Substack tells this origin story from the inside. She weaves in her own path through the pain world, including her friendship with chronic pain advocate Siobhan Reynolds, founder of the Pain Relief Network, and her own diagnosis with Ehlers–Danlos syndrome. She then patiently walks readers through what the footage and documents reveal.

What emerges is not a defense of every prescribing decision ever made. It is something more unsettling: a portrait of a legal system that decided it was easier to dramatize a few high-profile prosecutions than to grapple with the real drivers of overdose and despair.

When the DEA Writes Medical Policy

Once you see these cases from the inside, the larger pattern comes into focus.

Prosecutors leaned on cooperating witnesses, often people who themselves had been charged, to transform complex medical practices into simple crime stories.

DEA agents and auditors treated prescribing volume as guilt, with almost no capacity to distinguish a high-complexity referral practice from a storefront drug operation.

The media, fed a steady diet of press releases and perp walks, amplified the “drug dealers in white coats” narrative until it hardened into common sense.

And while those courtroom dramas played out, something quieter, and more damaging. was happening across the country.

Doctors who were never criminally charged saw colleagues indicted or their offices raided — which led them to decide that continuing to treat high-risk patients simply wasn’t worth taking the chance. 

Pharmacists also grew skittish about filling legitimate prescriptions. Medical boards and hospital systems imposed rigid rules, less in the service of good medicine than to signal compliance and to distance themselves from the crisis that had been miscast in the public eye.  

The overdose crisis surged forward in the meantime, driven increasingly by illicit fentanyl and a volatile street supply that no prosecution could touch. Prescribing plummeted, while overdose deaths soared.

This is the great irony The PAIN GAME helps expose: The very tools we were told would “fix” the crisis — aggressive DEA enforcement against prescribers — did little to curb overdoses. But they have been devastatingly effective at making it harder for people in pain to get care.

Why The Pain Game is Timely Today

You cannot reconstruct this history by looking backward. Many of the key players are gone. The media environment has only grown more hostile toward anyone who challenges the standard narrative about opioids. The raw fear that Libby detected in the early 2000s has turned into a kind of enforced silence.

That’s why Bianco’s work on The PAIN GAME is so valuable. She and Erica were there as it happened. I have learned that they turned over every page in their research: trial transcripts, medical records, internal memos, and obscure legal filings. They followed the story from exam rooms and courtrooms all the way to Capitol Hill, and they never stopped asking, “What actually happened here?”

If you care about pain medicine, civil liberties, or the rule of law, you’ll find The PAIN GAME both captivating and deeply sobering. It shows, in human terms, how we let a criminal justice narrative substitute for real health policy, and how that mistake still shapes the lives of patients and clinicians today.

The first episode is your entry point into that world. Read it. Sit with it. And then, if you find yourself thinking, No one ever told this part of the story, hit the subscribe button on Amy Bianco’s Substack.

We cannot undo the damage that has been done, but we can tell the truth about how it happened. The PAIN GAME is one of the few places where that truth is being documented, carefully and courageously, in real time.

Lynn R. Webster, MD, is a pain and addiction medicine specialist and serves as Executive Vice President of Scientific Affairs at Dr. Vince Clinical Research, where he consults with pharmaceutical companies.

Dr. Webster is the author of the forthcoming book, “Deconstructing Toxic Narratives -- Data, Disparities, and a New Path Forward in the Opioid Crisis,” to be published by Springer Nature.

Winter Taught Me a Better Way to Cope with Chronic Pain

By Crystal Lindell

We’ve already had our first snowfall here in northern Illinois. Regardless of the official day winter begins next month, the first snow marks the start of winter for us.

And when you have chronic pain, the season brings with it cursed gifts, offering both a time of guilt-free rest and more days of ache.

During the summer, there’s a guilt that accompanies any days spent inside, even if you’re doing it because your pain is too intense to allow for anything else. Watching TV all day makes me feel like I am personally wasting the warm weather and sunshine.  

But that is not the case in winter. Instead, the long nights and cold days allow me to embrace the comfort of staying in, curled up under layers of blankets. 

I already have my Christmas tree up, and the warm glow makes being a couch potato seem almost magical.

And since the sky turns midnight blue at 5 pm, it suddenly feels almost natural to go to bed early. 

These are things my chronic pain-riddled body enjoys year-round. But in the winter, societal expectations allow me to indulge in the impulse to take full rest days or even rest weeks, without feeling the summertime angst about it.

The change in seasons also brings with it lots of changes in barometric pressure, which means all those cozy evenings come with a downside.

My body always knows when it’s about to snow, or sleet or both. It also feels every temperature change as it happens. Anytime it goes from -10 degrees to 40 and back again, my ribs feel it. 

The result is often multiple days spent with the type of excruciating pain that barely even responds to opioid pain medication.

Over the years, I have found that the only treatment that works for those pain flares is to accept them. I can’t stress myself out about it, because it only serves to escalate the pain. So I have to try to stay as calm as possible. My body can’t handle activity under those circumstances.

Which brings me back to those guilt-free rest days that winter supplies in ample amounts. And embracing things instead of trying to fight them.

Growing up in the Midwest, I was often taught that winter was a season to be fought and denied. Just a few months that we all had to endure until the “real” weather came back. Most people here spend the winter complaining, cursing, and just trying to survive.

A few years ago, I took a trip to Montreal, Canada in January, and witnessed an entirely different approach. Despite the fact that the holiday season was well behind us, the city was filled with winter festival activities, ice statues, colorful lights, and just a general sense that the dark and cold days were actually a good thing.

The experience has since shaped my own approach to the coldest months of the year. I do my best to appreciate the gifts that gray days and eternal nights bring. It’s a time for all of us to rest, refocus, and embrace the downtime the cold weather affords us.

Embracing pain has the same effect. When you learn to let it exist, it is paradoxically easier to keep it confined to smaller flare ups.

Weather forecasters predict many of us are in for a particularly harsh winter this year, with more snow and colder temperatures. 

But that doesn’t mean it has to be a slog.

When we take the winter season as it is, it can bear its gifts of rest and time. And who among us doesn't need more of both?

Low-Glutamate Diet Linked to Fewer Migraines 

By Pat Anson

A diet low in glutamate significantly reduced migraines in U.S. veterans with Gulf War Illness, according to a new study that documents for the first time that a reduction in migraine symptoms is linked to changes in the brain.  

Glutamate is an amino acid used in food additives like monosodium glutamate (MSG), which is widely used in processed food and soups as a flavor enhancer. Previous studies have shown that a low glutamate diet reduces pain and other symptoms from fibromyalgia.   

Researchers at Georgetown University Medical Center observed a “big, big decrease” in migraines in 40 veterans with Gulf War Illness a month after they were put on a low-glutamate diet. Like fibromyalgia, Gulf War illness causes an array of musculoskeletal, gastrointestinal, and neurologic symptoms, including migraines. It is thought to be caused by exposure to toxic chemicals during the war.

“More than half of the Gulf War veterans had migraines before the diet, and that dropped to under 20% after following the diet for one month,” said senior author Ashley VanMeter, PhD, Professor of Neurology at Georgetown University School of Medicine. “So it was a very significant drop.”

In addition to fewer migraines, veterans on the low-glutamate diet also had significant reductions in widespread body pain, fatigue, mood issues, and cognitive dysfunction. 

Findings from the study were recently presented at the annual meeting of the Society for Neuroscience in San Diego. The research, funded by the U.S. Department of Defense, grew out of a collaboration with Kathleen Holton, PhD, a nutritional neuroscientist at American University, who has been researching the low-glutamate diet as a way to manage neurological conditions. 

In addition to food additives, glutamate occurs naturally in foods like tomatoes, cheese, mushrooms and nuts. Glutamate acts as a neurotransmitter in the brain and is believed to stimulate nerve cells that process pain signals. 

In the Georgetown University study, researchers used brain scans to compare differences in the visual cortex – the part of the brain that processes visual information – in patients with Gulf War Illness and a group of healthy patients. Those with Gulf War Illness had a thicker right visual cortex and were more likely to report migraines than the healthy control group. 

But after being put on a low glutamate diet, the brain scans of Gulf War Illness vets showed a significant reduction in cortical thickness.

Holton says the findings support the theory that glutamate may damage nerve cells, causing a repetitive cycle of neuroinflammation and oxidative stress in the brain. 

“We think this is one of the reasons people who are susceptible to dietary glutamate tend to have prolonged symptoms over time,” said Holton.  

Thickening of the visual cortex is common among migraine sufferers, especially those whose migraines occur with aura, or visual disturbances. That raises the question of whether a low-glutamate diet could be an inexpensive treatment option for patients with migraine or fibromyalgia..  

“This is a very doable diet,” VanMeter said. “It’s a healthy diet, it’s not that hard to follow, and it’s a very low-cost way of treating what for some individuals is a chronic and debilitating condition.” 

Holton noted that the study also adds to a growing body of evidence about how processed foods impact health.

“This speaks to the fact that diet can not only make us sick, but can also acutely treat our symptoms,” she said.

The FDA considers MSG to be “generally recognized as safe,” although some people are sensitive to it and experience short-term, mild symptoms, such as headache, numbness, flushing, tingling, palpitations, and drowsiness.

“Over the years, FDA has received reports of symptoms such as headache and nausea after eating foods containing MSG. However, we were never able to confirm that the MSG caused the reported effects,” the agency says.

Chronic Pain Raises Risk of High Blood Pressure

By Pat Anson

Having untreated or poorly treated chronic pain is known to raise the risk of serious health problems, including high cholesterol, elevated pulse, arteriosclerosis, and heart attack..

So it should come as no surprise that chronic pain also increases the risk of high blood pressure, according to a new study by the American Heart Association, which found that the extent and location of the pain may determine the level of risk. 

Someone with chronic widespread body pain, for example, has a 74% higher risk of developing high blood pressure; while chronic headaches are associated with a 22% higher risk and chronic back pain has a 16% higher risk.

“The more widespread their pain, the higher their risk of developing high blood pressure,” said Jill Pell, MD, Professor of Public Health at the University of Glasgow in the UK and lead author of the study published in the journal Hypertension.

“Part of the explanation for this finding was that having chronic pain made people more likely to have depression, and then having depression made people more likely to develop high blood pressure. This suggests that early detection and treatment of depression, among people with pain, may help to reduce their risk of developing high blood pressure.”

Pell and her colleagues analyzed over 13 years of health data from more than 200,000 adults enrolled in the UK Biobank Project. Participants completed a baseline questionnaire that asked if they had experienced pain in the last month that interfered with their usual activities. 

They also noted if the pain was in their head, face, neck/shoulder, back, stomach/abdomen, hip, knee, or all over their body. If they reported pain, they indicated whether pain persisted for more than three months.

Depression was measured based on participants’ responses to questions about the frequency of a depressed mood, disinterest in activities, restlessness or lethargy. Inflammation was measured with blood tests for C-reactive protein (CRP).

At the end of the study period, nearly 10% of all participants developed high blood pressure, which is considered a blood pressure measurement higher than 130/80 mm Hg or 140/90 mm Hg.

Compared to people with no pain, people with short-term acute pain had a 10% greater risk of high blood pressure, while those with chronic localized pain had a 20% higher risk.

When comparing sites of pain, there was a wide variation in risk levels:

  • 74% higher risk for chronic widespread pain

  • 43% higher risk for chronic abdominal pain

  • 22% higher risk for chronic headaches

  • 19% higher risk for chronic neck or shoulder pain

  • 17% higher risk for chronic hip pain

  • 16% higher risk for chronic back pain

Depression and inflammation accounted for 11.7% of the association between chronic pain and high blood pressure.

The findings highlight the need for good pain management to prevent or reduce the risk of hypertension and other health problems.

“When providing care for people with pain, health care workers need to be aware that they are at higher risk of developing high blood pressure, either directly or via depression. Recognizing pain could help detect and treat these additional conditions early,” Pell said.

Pain Relievers Can Cause High Blood Pressure

Another consideration is the need for further studies on the role of pain medicine in high blood pressure. Ibuprofen and other nonsteroidal anti-inflammatory drugs (NSAIDs) may increase blood pressure and worsen pre-existing hypertension. They can also interfere with the effectiveness of some blood pressure medications. 

The effect is more pronounced with some NSAIDs over others. Aspirin, for example, appears to have less effect on blood pressure than naproxen, which can cause the body to retain salt and water, leading to fluid buildup and hypertension. 

Opioids can cause both low and high blood pressure, depending on the dose and duration of use. Sudden discontinuation of long-term opioid use is associated with increased blood pressure

“Chronic pain needs to be managed within the context of the patients’ blood pressure, especially in consideration of the use of pain medication that may adversely affect blood pressure,” said Daniel Jones, MD, Dean and Professor Emeritus at the University of Mississippi School of Medicine.

One limitation of the study is that participants were middle- and older-aged adults who were mainly white and of British origin – therefore the findings may not apply to people from other racial or ethnic groups, or who live in other countries.

Other contributing factors is that participants reporting pain were more likely to be women, have an unhealthy lifestyle, larger waists, higher body mass index (BMI), more long-term health problems, and live in areas with higher unemployment, lower home and car ownership, and more overcrowding.

Shame on Me 

By Rochelle Odell 

Why a headline like “Shame on Me”? 

I have lived with Complex Regional Pain Syndrome (CRPS), an intractable and painful nerve disease, for nearly 34 years. 

And I used my fear of a pain flare to avoid getting a colonoscopy. 

For four years, I thought I had hemorrhoids. They are painful, irritating and embarrassing. After all, who wants to bend over for your primary care doctor to examine them?

Yes, she said, I definitely have hemorrhoids. So I let the symptoms ride.

Parts of this column are a bit graphic. However, there’s a good reason why I’m sharing them. I don’t want you to make the same mistakes I did. 

In January of this year, after spending three days on the toilet feeling like I was trying to expel whatever was in my bowels (along with the bowels themselves), a large mass emerged. 

I saw my doctor again and she said it was hemorrhoids that had become very swollen and were bleeding.

Coupled with my CRPS, they made my pain even worse. Pain at a level I had never experienced before. It never lets up, never. 

Lest we not forget, adult diapers have become my new norm as the mass is on the rectum/sphincter, so I am now stool incontinent. Oh joy. 

ROCHELLE ODELL

This is a topic rarely discussed, but once it is brought up, I learned I am not the only one. When one discusses this, I learned others also suffer from the same problems – the same pain, the same embarrassment, and the same wearing of diapers.

My CRPS pain reached a new high and, of course, my one prescribed pain medication became a joke. It's a higher dose than many receive these days, but it basically only works for 30-45 minutes before waning.

My PCP added a new glitch to my stress level, when she sold out to an insurance company and became a private equity provider. How long would her practice continue? Not long. She retired at the end of August. 

Like most patients when we find a good provider, we do not want to lose them. Ever. I liked Dr. Powell a lot, and saw her for eight years. Being a black doctor, I believe all she had to endure to get where she did helped her be a better doctor. All her patients gave her five star reviews. 

My first question to her was did she still have autonomy when it comes to treating her patients, ordering tests, and speciality referrals? I believe that question surprised her as few people know about private equity and fewer understand the ramifications. 

She did order a referral for me to see a surgeon for a hemorrhoidectomy. Not a surgery I was looking forward to, after all it would be a whole new team that I had to bare my toosh to. So I delayed making that appointment. Shame on me. 

By June, the mass I had named George had grown. I had no choice, I had to see the surgeon. He also said the mass was hemorrhoids, no mention of anything more serious. So, the surgical procedure was scheduled. 

Not one mention of cancer, he hadn't ordered any scans or tests, so silly me thought I had a big, bleeding hemorrhoid. 

The day before the scheduled surgery, I was given the option of drinking two bottles of magnesium citrate or Golightly, a prescription laxative. I opted for the magnesium citrate, because it sounded less disruptive to my bowels. Shame on me.

Please do what I didn't, which is read about the many adverse effects that magnesium citrate can cause and did cause in me. It is not a harmless laxative.  After half the first bottle, my ears began ringing and my heart started skipping all over. It went downhill from there. I truly felt like I was going to die.

The magnesium citrate did not even do the bowel cleanse. Kept waiting for the explosion I had heard and read about. I could barely move the rest of the afternoon and my pain was creeping up.

Mind you, I haven't been eating much these last few months. I was close to 200 pounds three years ago, the heaviest I have ever been. But eating caused very painful bowel movements and I lost my appetite due to the increased pain.

I came out of anesthesia to learn the surgeon had only performed a biopsy. My pain level was approaching a 10 when he told me the bad news.

“You have cancer,” he said, matter of factly. 

I learned it is adenocarcinoma, the most common of all cancers that starts in mucous membranes, like the bowels/rectum. It totally surprised, even shocked me.  

My PCP had ordered the Cologuard test about three years ago, after I flippantly told her I don't do colonoscopies. And of course I tossed out the Cologuard order. Shame on me.  

I was sent home after the biopsy, still reeling from the magnesium citrate, and in excruciating pain. My sweet friend Stella, who has been a godsend, took me to the hospital and back home after I was discharged. I was in so much agony by the time we got home that I screamed into my pillow.

Stella urged me to call 911 and I finally did. I was taken to my local hospital where I was treated very well, and given strong doses of IV Dilaudid to manage the pain. The ER doctor ordered a CT scan, where the cancerous mass was glaring for all to see. 

Oh yeah, they had to change my diaper every hour or so, and by this point everybody and their relatives had seen my bottom. So much for being embarrassed. 

I was transferred back to the hospital where the biopsy was done and got another CT scan. I spent three days in the hospital before I was transferred to a skilled nursing facility for two weeks to gain strength and try to bring my pain under control. 

Both facilities provided adequate pain management including a fentanyl patch, oxycodone and Dilaudid. For those two weeks, I still experienced symptoms from the magnesium citrate. Never again.

I had to leave my pain management group because they don't do palliative or hospice care, and they would not add any additional pain medication. With how badly cancer patients are being treated these days, I was so afraid my meds would be reduced. But so far so good 

Because I need a portacath for imagery tests, it took four months to get an MRI scheduled at a university medical center in my area. Then I learned a doctor changed it back to another facility where they have no one to access my portacath. 

I just shake my head at this level of incompetence. I have explained multiple times why I must have it at the university medical center. I normally have no issues with an MRI, because I am not claustrophobic. But because of George, I cannot lay flat on my back and must be sedated through the portacath.

I have not fully acknowledged the cancer diagnosis. Like today, when speaking to my oncology office, I ended up crying out of frustration. These senseless delays could ultimately cause my death.  

A PET scan found a couple of small growths on each lung, so I am now waiting for the appointment for a biopsy. In the past, I have had scar tissue show up on my chest X-rays due to my asthma and I am praying it's not lung cancer. 

I have done my best to exclude sugar from my diet, as sugar feeds cancer. I have lost so much weight, I’m down to 113 pounds. I can't remember the last time I was this small. My body has lost almost all the fat it had, my ribs and collarbone stand out, glaring in the mirror at me. 

Chemotherapy and radiation haven't even started yet, and the expected weight loss from the chemo, well, I have no idea where it will come from. There is no more fat.

Living alone frightens me now. No, it terrifies me. I had to rehome one of my two dogs, because I can no longer care for myself and two dogs.

I have a whole new set of medical terminology to learn. Patients must navigate and fight for every part of needed care, when the last thing we want to do is be on the phone daily with insurance and one's Medicare provider.

I have also learned oncologists haven't heard of CRPS, a disease known to be triggered by chemotherapy. 

I am tired, don't want to talk on the phone, and believe I shouldn't have to.  My friend Stella has taken over calling and explaining all the issues. 

My pharmacy is causing me grief now, it won't cover my full oxycodone dose, so I spent over 20 minutes on the phone talking to the pharmacist. He isn't taking on new patients on opioids because his wholesaler is supposedly giving him grief. I told him I understand his position. 

In closing, please don't be like me. Don't use feeble excuses to not get a colonoscopy or let embarrassment keep you from having your doctor examine your toosh.  

What I tried to delay for dumb reasons has actually caused my pain to worsen. 

Shame on me.