10 Tips for Surviving the Holidays With Chronic Pain

By Crystal Lindell

The holiday season can be stressful, even if you go into it with full health. If you have chronic pain or any type of chronic illness, it can really wear you down, making it difficult to fully enjoy the season's magic and community. It can even make you start to resent the holidays and your family. 

I’ve been navigating the holidays with chronic pain for more than a decade, and have learned there are ways to make things easier and more joyful. 

Many of them come down to doing less so that you can enjoy more – which is good advice in general if you have chronic pain. But it’s particularly important around the busy holiday season. 

Here are my 10 tips to survive the holidays with chronic pain. Be sure to leave any tips you have in the comment section below! 

1. Check Pharmacy Hours

First things first: Make sure you can get your meds. 

My rural pharmacy is closed on Sundays and every major holiday. That means that if I have a refill due on Christmas Eve, I need to either have my doctor send the prescription the day before or wait until they reopen on Dec. 26 to get my medications. 

God forbid if I forget to ask and have to do Christmas Day without pain medication. At that point, I might as well cancel Christmas. 

Thankfully, my doctor has been pretty good at sending in refills a day early when the pharmacy is set to be closed. But he only does it when I remember to ask him ahead of time. 

So check now if your pharmacy is closed on any of your upcoming refill days, and plan ahead with your doctor. 

2. Consider Skipping Home Decorations

A few years ago, my family had a really rough run of horrible things happen. When we got to the holidays, I didn’t have any energy or spirit left for Christmas decorations. 

That doesn’t mean we didn’t have any cozy holiday spirit at home though. We put YouTube videos of fireplaces crackling on our living room TV, and also played ones that had Christmas decorations around the mantle and holiday music playing in the background (this was one of our favorites).

At a time when I needed the holiday magic, but didn’t have the energy to create it myself, the virtual fireplace videos really helped us enjoy the season. 

Decorating for the holidays is both expensive and energy consuming, so if chronic illness means you don’t have it in you to do it, opt for something virtual instead. After all, sometimes holiday magic means turning to YouTube. 

3. Say No To Events

Decades ago, one of my friends gave me a piece of advice that I still carry with me today: Only do things that you want to do or that you need to do. Skip the stuff that you feel like you “should” do. 

There can be a lot of pressure around the holidays to make sure you go to every family event from every branch of the family tree. It gets even more intense if you have complicating factors like a significant other’s family, divorced parents, or friends who you consider family. 

If you have a chronic illness though, I highly recommend sticking to my friend’s sage advice: Only go to events that you want to go to or that you need to go to. Skip the ones that you feel like you “should” go to. 

Maybe this means seeing just one side of the family this year or skipping tree lighting festivals that you’d gone to in the past, so that you have the energy to actually enjoy Christmas Day celebrations. 

Saying “no” in this case means that you can say an enthusiastic “yes” to other stuff. 

4. Plan Rest Days

Rest days are pretty antithetical to American culture, but when you have a chronic illness you either learn to embrace them, or your body forces them onto you. 

If I have a large holiday event on my calendar, I now know to plan an equally large rest day to complement it. I also never book two things on the same day – even if one is in the morning and the other is in the evening – because I know that my body can’t handle it. 

So if you’re doing two family gatherings this year for Christmas, consider doing Dec. 23 and Dec. 25 so that you can rest on Dec. 24. And if you want to go to a New Year’s Day party, consider skipping the midnight countdown on New Year’s Eve so that you know you’ll get enough sleep. 

5. Give Homemade, Used and Inexpensive Thoughtful Gifts

Being in chronic pain often means being low on money. Don’t let it stress you out though. Having chronic pain also means that you often spend lots of time at home on your phone or computer — which is perfect if you want to track down gifts that are both inexpensive and thoughtful. 

People love thoughtful gifts more than anything expensive. Last year I made my family a homemade cookbook of all our favorite family recipes. Because I have a laser printer at home, the main financial costs were just the binders and the plastic sleeves that I used for the pages. And then I got all the gift bags for $1.25 each at Dollar Tree. 

Of course, compiling all the recipes and laying it all out was time consuming, but time is something that I do have, especially since I was able to do a lot of the cookbook layout literally from my couch. 

Everyone LOVED the cookbooks. In fact, they loved it so much that I’m planning to make a second volume this year. 

Other thoughtful inexpensive gifts include things like homemade baked goods, used books, socks with little sayings on them, and eBay or Facebook Marketplace items that you know they’ll love. 

Stores known for their low prices, like Dollar Tree and Five Below also have great options. Three years ago I got my brother a $5 pet bed for his cat, who still uses it on a regular basis to this day. 

You definitely don’t have to spend a lot to spread holiday cheer. 

6. Wear Compression Socks During Travel

The holiday season usually means long car rides or airplane travel. There’s something about meds related to chronic pain that seem to cause feet swelling in those situations — especially ibuprofen. 

But a good pair of compression socks can really help. They sell inexpensive ones on Amazon, but you can also get them at your local pharmacy. The socks can make such a difference in how your legs feel, can help prevent blood clots, and can even help make sure your shoes aren’t too tight after hours sitting in a car. 

Plus, when compression socks are hidden under a pair of pants, nobody will even know you’re wearing them!

7. Shower the Night Before

Anyone with chronic illness is acutely aware of how much energy taking a shower and getting ready can take. 

If you know you have a long day ahead of you, showering the night before can be an easy way to help you conserve energy for the next day’s events. 

Just add a little dry shampoo to your hair the next morning, if needed, and nobody will know the difference – but you’ll definitely notice how much more energy you have to endure a busy day. 

8. Consider Hosting 

I know this tip could be controversial because hosting itself can come with a lot of physical work, mental stress, and financial costs — I get that. 

But it’s a trade off. What you put in on the front end you might get back ten-fold on the back end: You get to be in your own home for the holiday – and don’t have to travel back home when it’s over. 

Plus, if you have pets, you don’t have to worry about whether you should take them with you, leave them home alone for a long period of time, or even find a pet sitter. You can just be with them at home. 

Yes, you’ll still have to spend time after the party cleaning up, but you can take as long as you want to do that. 

If you find that you’re most comfortable in your own home, consider hosting this year. 

9. Make Holiday Meals a Potluck

Whether or not you host, I always recommend doing potluck meals for the holidays. 

This quite literally spreads the cost and stress of meal preparation out among the group, so that nobody gets overwhelmed. Anyone who doesn’t have the energy to cook can always grab something at the store, even if it’s something inexpensive like Hawaiian Rolls. 

As an added bonus, if you have dietary restrictions, this also means you can make sure that your dishes meet them, so you know you’ll have something to eat.

10. Limit COVID Exposure 

I know it’s not always practical to mask for family gatherings, but just being aware of COVID risk, getting vaccinated, and masking for travel can really help minimize your COVID exposure. 

If you're sick with COVID symptoms or you know someone else at an upcoming event is sick, definitely feel comfortable staying home. After all, the last thing anyone with a chronic health problem needs is another health problem. 

You deserve to have a magical holiday season, especially if you’re also struggling with health issues. But you don’t have to do everything like a healthy person would to enjoy the festivities. With these tips and an open heart, you’re sure to find some holiday joy this season! 

12 Holiday Gifts for People with Chronic Pain and Illness

By Pat Anson

Are doctors and pharmacists helping the DEA spy on pain patients? Does Big Pharma control how healthcare news is reported? Is the Epstein-Barr Virus the hidden cause of your chronic pain? Can kratom be used safely? Are you buzzed that Willie Nelson wrote a cannabis cookbook?

The answers to these and other questions can be found in PNN’s annual holiday gift 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 always “gift” one to yourself. Click on the book cover or title to see price and ordering information.

The Epstein-Barr Virus: A New Factor in the Care of Chronic Pain

Dr. Forest Tennant examines the Epstein-Barr Virus (EBV) and its hidden role in causing chronic pain. We are all carriers of EBV, which is normally harmless and dormant. But when the virus reactivates, it is carried throughout the body, infecting and damaging body tissues. Dr. Tennant says anyone with chronic pain severe enough to require daily pain medication may have EBV reactivation, and should take steps to diagnose and treat it. 

Policing Patients: Treatment and Surveillance of the Opioid Crisis

Prescription Drug Monitoring Programs (PDMPs) were launched across the country to help prevent drug abuse and save lives. In actuality, author Elizabeth Chiarello says PDMPs are “Trojan horse” surveillance tools used by law enforcement to spy on patients. PDMPs interfere with the practice of medicine by turning doctors and pharmacists into undercover agents — often pitting them against their own patients.

Greed to Do Good: The CDC’s Disastrous War on Opioids

Dr. Charles LeBaron worked for nearly three decades as an epidemiologist for the Centers for Disease Control and Prevention. Although not directly involved in the CDC’s opioid prescribing guideline, LeBaron recognized the disastrous consequences it had on patients. In this book, he gives an insider’s perspective on the CDC’s institutionalized arrogance and how its misguided strategy to reduce overdoses only made the opioid crisis worse.

Follow the Science: How Big Pharma Misleads, Obscures, and Prevails

Journalist Sharyl Attkisson exposes how the pharmaceutical industry infiltrated government and academia, enabling it to put profits over people by controlling how healthcare is covered by the news media. “We exist largely in an artificial reality brought to you by the makers of the latest pill or injection,” Attkisson writes. “Invisible forces work daily to hype fears about certain illnesses, and exaggerate the supposed benefits of treatments and cures.”

Lies I Taught in Medical School

Inspired by his own health problems, Dr. Robert Lufkin wrote this book to expose the “medical lies” that contribute to chronic illness — some of which he taught as a professor at UCLA and USC. Lufkin believes pills and procedures are prescribed too often to mask symptoms, when diet and lifestyle changes can resolve many chronic conditions like diabetes, hypertension, obesity, and cardiovascular disease.

The Big Book of Kratom: The Ultimate Manual to Understanding and Using Kratom

Author Fallon J. Smith takes a deep dive into the pros and cons of kratom, gleaned from many years of using it himself. New kratom users can learn about the various strains and methods of ingesting the herbal supplement to treat everything from chronic pain and anxiety to addiction and depression. Smith also shares important lessons about dosing, side effects, and the potential risks of kratom withdrawal and addiction.

Willie & Annie Nelson’s Cannabis Cookbook

Legendary singer/songwriter Willie Nelson and his wife Annie share their favorite recipes for getting high and full at the same time. Part travelogue and part cannabis cookbook, there’s a colorful story behind every recipe, such as Baked Eggs & Asparagus (with 17mg of THC), Vegan Cannabis Butter, Cannabis Chocolate Cake, and Buttermilk Fried Chicken (no THC).

On Call: A Doctor’s Journey in Public Service

In this memoir, Dr. Anthony Fauci shares some of the highlights — and lowlights — from nearly 40 years working for the National Institutes of Health, including the crucial roles he played in fighting AIDS, the Ebola virus, SARS, anthrax and, of course, Covid-19. Fauci grew up in modest circumstances, living above his father’s Brooklyn pharmacy, to become a health advisor to seven presidents and one of the most famous doctors in world.

Grown Woman Talk: Your Guide to Getting and Staying Healthy

Dr. Sharon Malone is an OB/GYN who wrote this book to help older women deal with the complexities of aging. Often ignored or gaslighted by the healthcare system, older women may have their chronic pain and discomfort dismissed as female hysteria caused by menopause. Dr. Malone has tips to end this “normalized suffering” and empower grown women to live better, age better, and get better medical treatment.

Long Illness: A Practical Guide to Surviving, Healing and Thriving

Drs. Meghan Jobson and Juliet Morgan wrote this book to give patients and providers a better understanding of long-lasting illnesses such as autoimmune disease, chronic fatigue, chronic pain, inflammation and Long Covid. They take a holistic approach to managing symptoms through cognitive behavioral therapy, traditional Eastern medicine, mindfulness and self-care — emphasizing that recovery is a process and not always a destination.

Toxic Stress: How Stress Is Making Us Ill

Dr. Lawson Wulsin is a psychiatrist who has found that toxic stress and childhood trauma often play hidden roles in the development of heart disease, diabetes, depression and chronic illnesses in midlife. In this book, Dr. Wulsin offers practical advice and tools to recognize signs of toxic stress in our lives, and learn how to help your mind and body recover from it.

The Long Covid Reader

Author Mary Ladd shares the stories of 45 people living with Long Covid, who recount in essays and poems how COVID-19 continues to impact their lives long after their initial infections. A long-hauler herself, Ladd spent a year gathering personal stories about Long Covid in an effort to humanize the neglected suffering of millions of people who live with a mysterious chronic illness from the “world's biggest mass-disabling event.”

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.

How to Keep Bones Healthy and Prevent Fractures From Osteoporosis

By Drs. Ting Zhang and Jianying Zhang

Because there are typically no symptoms until the first fracture occurs, osteoporosis is considered a silent disease. Some call it a silent killer.

Osteoporosis is a bone disease characterized by decreased bone density and strength, leading to fragile, brittle bones that increase the risk of fractures, especially in the spine, hips and wrists.

The National Osteoporosis Foundation estimates that more than 10 million Americans have osteoporosis. Another 43 million have low bone mass, which is the precursor to osteoporosis. By 2030, the number of adults with osteoporosis or low bone mass is estimated to increase by more than 30%, to 71 million.

The reasons for the increase include lifestyle issues, particularly smoking, lack of physical activity and alcohol abuse. Our aging population, along with the insufficient attention paid to this disease, are also why osteoporosis is on the rise.

If you are older, it may be discouraging to read those statistics. But as orthopedic specialists who have studied this disease, we know that osteoporosis is not inevitable. The key to having healthy bones for a lifetime is to take some simple preventive measures – and the earlier, the better.

Although the symptoms are not obvious early on, certain signs will indicate your bones are becoming weaker. The most serious complications of osteoporosis are fractures, which can lead to chronic pain, hospitalization, disability, depression, reduced quality of life and increased mortality. Worldwide, osteoporosis causes nearly 9 million fractures annually. That’s one osteoporotic fracture every three seconds.

Height Loss a Common Symptom

Minor bumps or falls may lead to fractures, especially in the hip, wrist or spine. These types of fractures are often the first sign of the disease.

If you notice that you’re getting shorter, the cause could be compression fractures in the spine; this too is a common symptom of osteoporosis.

Although it’s typical for most people to lose height as they age – about 1 to 1½ inches (2.5 to 3.8 centimeters) over a lifetime – those with osteoporosis who have multiple spinal fractures could lose 2 to 3 inches or more in a relatively rapid time frame.

Curved posture, or noticeable changes in posture, may lead to a hunched back, which could be a sign that your spine is weakening and losing density.

Persistent back pain is another indicator – this too is the result of tiny fractures or compression of the spine.

Calcium and Vitamin D

Osteoporosis cannot be completely cured, but certain lifestyle and dietary factors can lower your risk.

Calcium and vitamin D are essential for bone health. Calcium helps maintain strong bones, while vitamin D assists in calcium absorption. Women over age 50 and men over 70 should consume at least 1,200 milligrams of calcium daily from food and, if necessary, supplements.

The easy way to get calcium is through dairy products. Milk, yogurt and cheese are among the richest sources. One cup of milk provides about 300 milligrams of calcium, one-fourth of the daily requirement. If you are vegan, calcium is in many plant-based foods, including soy, beans, peas, lentils, oranges, almonds and dark leafy greens.

Adults should aim for two to three servings of calcium-rich foods daily. Consuming them throughout the day with meals helps improve absorption.

Vitamin D is obtained mostly from supplements and sunlight, which is the easiest way to get the recommended dose. Your body will produce enough vitamin D if you expose your arms, legs and face to direct sunlight for 10 to 30 minutes between 10 a.m. and 3 p.m., two to three times a week.

Although it’s best to wear short-sleeve shirts and shorts during this brief period, it’s okay to wear sunglasses and apply sunscreen to your face. Sunlight through a window won’t have the same effect – glass reduces absorption of the UV rays needed for vitamin D production. People with darker skin, or those living in less sunny regions, may need more sunlight to get the same effect.

If a doctor has given you a diagnosis of osteoporosis, it’s possible the calcium and vitamin D that you’re getting through food and sun exposure alone is not enough; you should ask your doctor if you need medication.

Regular Exercise Important for Women

Regular exercise is an excellent activity that can help stave off osteoporosis. Weight-bearing exercises, such as brisk walking, jogging and dancing, are great for increasing bone density. Strength training, such as lifting weights, helps with stability and flexibility, which reduces the risk of falling.

Aim for 30 minutes of weight-bearing exercise at least four days a week, combined with muscle-strengthening exercises at least twice a week.

Particularly for women, who lose bone density during and after menopause, regular exercise is critical. Working out prior to menopause will reduce the risk of osteoporosis in your later years.

And avoid harmful habits – smoking and heavy alcohol consumption can weaken bone density and increase the risk of fractures.

Fall prevention strategies and balance training are crucial and can help reduce the risk of fractures.

Screening and Treatment

Women should start osteoporosis screening at age 65, according to the U.S. Preventive Services Task Force. Men should consider screening if they have risk factors for osteoporosis, which include smoking, alcohol use disorder, some chronic diseases such as diabetes, and age. Men over 70 are at higher risk.

Medical imaging such as a bone density scan and spinal X-rays can help confirm osteoporosis and detect compression fractures. These basic tests, combined with age and medical history, are enough to make a clear diagnosis.

Managing osteoporosis is a long-term process that requires ongoing commitment to lifestyle changes. Recognizing the early warning signs and making these proactive lifestyle changes is the first step to prevent the disease and keep your bones healthy.

Ting Zhang, MD, is a Research Scholar of Orthopedics at the University of Pittsburgh.

Jianying Zhang, PhD, is a Research Professor of Orthopaedic Surgery at the University of Pittsburgh.

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

Why Knee Pain Tends to Flareup as We Age

By Dr. Angie Brown

Knee injuries are common in athletes, accounting for 41% of all athletic injuries. But knee injuries aren’t limited to competitive athletes. In our everyday lives, an accident or a quick movement in the wrong direction can injure the knee and require medical treatment. A quarter of the adult population worldwide experiences knee pain each year

As a physical therapist and board-certified orthopedic specialist, I help patients of all ages with knee injuries and degenerative conditions.

Your knees have a huge impact on your mobility and overall quality of life, so it’s important to prevent knee problems whenever possible and address pain in these joints with appropriate treatments.

Healthy Knees

The knee joint bones consist of the femur, tibia and patella. As in all healthy joints, smooth cartilage covers the surfaces of the bones, forming the joints and allowing for controlled movement.

Muscles, ligaments and tendons further support the knee joint. The anterior cruciate ligament, commonly known as the ACL, and posterior cruciate ligament, or PCL, provide internal stability to the knee. In addition, two tough pieces of fibrocartilage, called menisci, lie inside the joint, providing further stability and shock absorption.

All these structures work together to enable the knee to move smoothly and painlessly throughout everyday movement, whether bending to pick up the family cat or going for a run.

Causes of Knee Pain

Two major causes of knee pain are acute injury and osteoarthritis.

Ligaments such as the ACL and PCL can be stressed and torn when a shear force occurs between the femur and tibia. ACL injuries often occur when athletes land awkwardly on the knee or quickly pivot on a planted foot. Depending on the severity of the injury, these patients may undergo physical therapy, or they may require surgery for repair or replacement.

PCL injuries are less common. They occur when the tibia experiences a posterior or backward force. This type of injury is common in car accidents when the knee hits the dashboard, or when patients fall forward when walking up stairs.

The menisci can also experience degeneration and tearing from shear and rotary forces, especially during weight-bearing activities. These types of injuries often require rehabilitation through physical therapy or surgery.

Knee pain can also result from injury or overuse of the muscles and tendons surrounding the knee, including the quadriceps, hamstrings and patella tendon.

Both injuries to and overuse of the knee can lead to degenerative changes in the joint surfaces, known as osteoarthritis. Osteoarthritis is a progressive disease that can lead to pain, swelling and stiffness. This disease affects the knees of over 300 million people worldwide, most often those 50 years of age and up. American adults have a 40% chance of developing osteoarthritis that affects their daily lives, with the knee being the most commonly affected joint.

Age is also a factor in knee pain. The structure and function of your joints change as you age. Cartilage starts to break down, your body produces less synovial fluid to lubricate your joints, and muscle strength and flexibility decrease. This can lead to painful, restricted movement in the joint.

Risk Factors for Knee Problems

There are some risk factors for knee osteoarthritis that you cannot control, such as genetics, age, sex and your history of prior injuries.

Fortunately, there are several risk factors you can control that can predispose you to knee pain and osteoarthritis specifically. The first is excessive weight. Based on studies between 2017 and 2020, nearly 42% of all adult Americans are obese. This obesity is a significant risk factor for diabetes and osteoarthritis and can also play a role in other knee injuries.

A lack of physical activity is another risk, with 1 in 5 U.S. adults reporting that they’re inactive outside of work duties. This can result in less muscular support for the knee and more pressure on the joint itself.

An inflammatory diet also adds to the risk of knee pain from osteoarthritis. Research shows that the average American diet, often high in sugar and fat and low in fiber, can lead to changes to the gut microbiome that contribute to osteoarthritis pain and inflammation.

Preventing and Treating Knee Pain

Increasing physical activity is one of the key elements to preventing knee pain. Often physical therapy intervention for patients with knee osteoarthritis focuses on strengthening the knee to decrease pain and support the joint during movement.

The U.S. Department of Health and Human Services recommends that adults spend at least 150 to 300 minutes per week on moderate-intensity, or 75 to 150 minutes per week on vigorous-intensity aerobic physical activity. These guidelines do not change for adults who already have osteoarthritis, although their exercise may require less weight-bearing activities, such as swimming, biking or walking.

The agency also recommends that all adults do some form of resistance training at least two or more days a week. Adults with knee osteoarthritis particularly benefit from quadriceps-strengthening exercises, such as straight leg raises.

Conservative treatment of knee pain includes anti-inflammatory and pain medications and physical therapy.

Medical treatment for knee osteoarthritis may include cortisone injections to decrease inflammation or hyaluronic acid injections, which help lubricate the joint. The relief from these interventions is often temporary, as they do not stop the progression of the disease. But they can delay the need for surgery by one to three years on average, depending on the number of injections.

Physical therapy is generally a longer-lasting treatment option for knee pain. Physical therapy treatment leads to more sustained pain reduction and functional improvements when compared with cortisone injections treatment and some meniscal repairs.

Patients with osteoarthritis often benefit from total knee replacement, a surgery with a high success rate and lasting results.

Surgical interventions for knee pain include the repair, replacement or removal of the ACL, PCL, menisci or cartilage. When more conservative approaches fail, patients with osteoarthritis may benefit from a partial or total knee replacement to allow more pain-free movement. In these procedures, one or both sides of the knee joint are replaced by either plastic or metal components. Afterward, patients attend physical therapy to aid in the return of range of motion.

Although there are risks with any surgery, most patients who undergo knee replacement benefit from decreased pain and increased function, with 90% of all replacements lasting more than 15 years. But not all patients are candidates for such surgeries, as a successful outcome depends on the patient’s overall health and well-being.

New developments for knee osteoarthritis are focused on less invasive therapies. Recently, the U.S. Food and Drug Administration approved a new implant that acts as a shock absorber. This requires a much simpler procedure than a total knee replacement.

Other promising interventions include knee embolization, a procedure in which tiny particles are injected into the arteries near the knee to decrease blood flow to the area and reduce inflammation near the joint. Researchers are also looking into injectable solutions derived from human bodies, such as plasma-rich protein and fat cells, to decrease inflammation and pain from osteoarthritis. Human stem cells and their growth factors also show potential in treating knee osteoarthritis by potentially improving muscle atrophy and repairing cartilage.

Further research is needed on these novel interventions. However, any intervention that holds promise to stop or delay osteoarthritis is certainly encouraging for the millions of people afflicted with this disease.

Angie Brown, DPT, is a Clinical Associate Professor of Physical Therapy at Quinnipiac University. Dr. Brown is a board-certified Orthopaedic Clinical Specialist through the American Board of Physical Therapy Specialties and a Certified Lymphedema Specialist.

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

Low Dose Opioids Do Not Raise Dementia Risk, But High Doses Might

By Crystal Lindell

There’s a new study out showing that low-dose opioids are not linked to an increased risk of developing dementia, but higher doses might. 

Researchers followed the health of over 1.8 million people in Denmark aged 60 to 75, about 5% of whom developed dementia. They tracked the opioid use of those with and without dementia to see what role, if any, opioids may have in causing cognitive decline.

They found that low dose opioids prescribed for chronic non-cancer pain — which they defined as up to 90 total standardized doses (TSDs) — was not consistently associated with dementia risk. However, doses above 90 TSD were associated with a slightly elevated dementia risk before age 90. 

Interestingly, the strongest association between opioids and dementia was found with “weak” opioids such as tramadol.

Total standardized doses are a different way of measuring opioid use than what is typically used in the United States. Medical guidelines in the U.S. focus on morphine milligram equivalents (MME) per day. Depending on the guideline, anything over 50 or 90 MME would be considered a high dose.   

For the Danish study, 1 TSD is the equivalent of 30 MME. So someone with a TSD of 90 is getting the equivalent of 2,700 MME over time. Researchers used this method because they wanted to see what the cumulative effect of opioids would have on dementia.  

“This study found that opioid use of less than 90 TSDs was not significantly associated with increased dementia risk. Above 90 TSDs of opioid use was associated with an elevated dementia risk before age 90 years, which persisted in individuals with chronic noncancer pain and in individuals solely exposed to weak opioids,” researchers reported in JAMA Network Open,.

They also added the favorite caveat of medical researchers everywhere: “Further research should ascertain whether the findings denote causality between opioids and dementia risk.” 

In other words, it is still unclear if taking higher doses of opioids leads to dementia, or if chronic pain puts people at higher risk of dementia. It’s a chicken and egg question without any answers. 

A previous study also found that high doses of opioids slightly raise the risk of dementia, but so did nonsteroidal anti-inflammatory drugs (NSAIDs). So switching someone from opioids to NSAID pain relievers won’t lower their risk.  

Regardless, given the findings in the Danish study about the lower doses, I am glad to see some more definitive evidence that opioids aren’t the cause of every ailment ever. 

I do worry that the study even existing will perpetuate harmful opioid-phobia myths though. For example, the study’s headline – “Opioids and Dementia in the Danish Population” – is just vague enough that casual readers may assume that the research did show a link between opioids and dementia, regardless of the dose. 

It also irks me that researchers included the favorite sentence of opioid-phobia propagandists: "Opioids are frequently used to treat chronic noncancer pain, but evidence of the effect on pain management and quality of life is lacking." 

As usual, the fact that millions of people around the world have told doctors that opioids help their pain is apparently not “evidence.” They can’t trust any of us.  

As someone who’s been on what the researchers would consider “low dose” opioids since I was 29 years old, I can tell you they do help manage my pain and give me a better quality of life. If the researchers found a higher dementia risk for me, I’d still keep taking opioids. 

Opioids are the only thing that allows me to live my life today. I’m not going to give that up because I might have a higher risk of dementia decades from now. In fact, if I did give them up, I suspect there’s a high chance that I would not make it into my senior years anyway, seeing as how opioids are often the only thing that makes my daily pain endurable. 

I suspect I’m not alone. Research like this is unlikely to deter most pain patients from taking opioids, but it could make some doctors hesitant to prescribe them. And that’s a shame. Because a study showing that low-dose opioids aren’t as bad as some feared should make doctors more comfortable prescribing them.

Shingles and My 10-Year-Old Bottle of Vicodin

By Cynthia Toussaint

A few years ago, a friend who’d been through a rowdy case of shingles tried to spook me.

“You of all people, Cynthia, have to get the shingles vaccine. You couldn’t go through this level of pain with all you’ve got going on,” she said.

Yeah, yeah, I thought, normies who don’t live with the flame-broiler called Complex Regional Pain Syndrome can’t hack the small stuff.

While Laura’s warning was well-intentioned, I decided to skip the shot because I’d heard it was a real ass kicker. That, and I’m already an Olympic-level pro at neuropathic pain. I’d be fine without getting the shingles vaccine.      

I bet on the wrong horse.    

In early August, a mysterious pain on the side of my left leg woke me. I’d never had aching pain that hurt so much, and rousted my partner John in alarm. Muscling through my day, the ache turned lava hot while I moaned and yelped. By bedtime, I was writhing and screaming. No position offered a smidge of relief and I ended up pretzelled against the foot board after only a couple hours of sleep.   

I couldn’t make heads or tails of this new pain. It burned something fierce like CRPS, but was unfamiliar. Terrified, I pointed out to John the places on my thigh where piercing pain, like striking arrows, were erupting. Worse, there was a “hatchet” in my groin.

42 years into CRPS, could this be a different kind of pain rearing its ugly head? The new version came complete with a high fever and wipe-out fatigue.

No amount of my old standby’s – rest, heat, distraction, kitty cuddling – offered relief. In fact, the pain kept amping higher, rendering me useless.

Soon, a bright-red, ghoulish rash appeared and began to spread by the hour. It felt like I was starring in my own horror film, with no pause button on the remote.

The next day, it hit me. This is goddamn shingles and I scooted off to an immediate care clinic.

I was disappointed to get a young male doctor and, true to form, he dismissed my symptoms by announcing that I’d burned myself with a heating pad. His only advice was for me to take a picture of the rash for reasons unknown. 

That night, while the rash continued to march on, the redness turned to bubbling blisters, and the next day I found myself back at immediate care.   

This time at the clinic I hit the jackpot, as a skilled and caring female doctor took about three seconds to diagnose shingles. Livid over the previous day’s dismissal, as treatment time was now of the essence, she instructed me to immediately pick up anti-viral medication and start them as soon as I got home.

Before leaving the room, she gave me a major fright. She looked into my eyes and told me that my shingles might become chronic, especially with my long CRPS history. At that moment, I had no doubt I was in for a world of unchartered hurt.                

For the next two months, except for doctor appointments, I lived between my bed and the couch, surviving one minute at a time. The blisters spread from the top of my thigh down to my knee, and up onto my left buttocks. Mixed with exquisite pain were patches of numbness, and my dermatologist gently warned that this might indicate nerve death.        

My allodynia was so severe I couldn’t bear anything touching the rash, and the never-ending pain kept me awake nights. I despised hearing from doctors, again and again, that I had the worst case of shingles they’d ever seen. Their biggest concern was that the rash would spread to my right side, in which case they suspected it would travel to my eyes and I’d likely lose my sight.   

Vicodin to the Rescue

The pain got so bad, John pleaded with me to take a Vicodin from a 10-year-old bottle he’d asked me to keep, just in case. In the past, this was unthinkable as my primary physician warned me that, due to being on a benzodiazepine, combining both medications might suppress my breathing. Despite that, I didn’t hesitate and got my first taste of blessed relief.

Soon my frantic pain doctor directed me to up my dose to four 5mg Vicodin tablets a day. Scared due to being opioid-naïve, I went on three instead. I could survive the pain then, but had zero quality of life. During this miserable time, I gulped laxatives to keep the pipes flowing, and for 10 days hobbled no further than our condo balcony. I was slowly cancelling my life and couldn’t even tolerate a visitor.

I ruminated over worst case scenarios. What if my pain stays chronic at a level ten? Also, my dermatologist told me I might be scarred forever.

Even if my pain improves, could I ever show my disfigured leg in public? Upon seeing the angry rash, my sister-in-law innocently chirped, “You can’t get in the pool with that, Cynthia. It’ll frighten the other swimmers.” I knew she was right and wanted to sob.

Mercifully, in the last month, the pain and rash (four tubes of scar gel and counting!) started to retreat, bit by bit. With great trepidation, I successfully weaned off the Vicodin, but sure enough, I’m left with post-herpetic neuralgia, the chronic pain I so dreaded.

While my numbness and allodynia are improving, the hatchet pain in my groin hasn’t dissipated. I’m over-the-moon happy to be swimming again with no problem, but for the first time this former ballerina is less than limber on her left side, which makes Pilates and Feldenkrais movement therapy formidable challenges.

While there are no guarantees, I remain optimistic for total healing because I take such good care of my body and mind. Three cheers for self-care!

Hands down, shingles at its apex was the worst pain experience of my life, and because of my CRPS, it was far, FAR worse than what a healthy person would have experienced. My doctors and I suspect the immunotherapy I took for cancer care over two years ago played a major role in getting shingles now, as it’s been the root of three prior serious pain complications.                   

While I can’t go back in time and take Laura’s sage advice about getting the almighty shingles vaccine, I can share my cautionary tale in hopes you’ll do so. With a caveat, I shuddered to learn the vaccine – which I’ll be getting in February – isn’t full proof. Inoculated folk can still get shingles, but those cases are rare and usually less severe, which is especially beneficial for those already wrangling with neuropathic pain.          

While I’m slowly moving my shingles nightmare (albeit with PTSD) into the rearview mirror, I’m haunted by a horrific question. Because my pharmacy refused to fill my pain doctor’s new prescription for Vicodin, what would have happened to me if not for my 10-year-old bottle?

In the grips of the worst pain and torture I’ve ever experienced and the absolute hopelessness of relief, in desperation what might I have done?

I don’t know, but am glad as hell I didn’t have to find out. My god, where is the mercy for people with pain?

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and multiple co-morbidities for over four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

Women, Elderly and Rural Americans More Likely to Have Chronic Pain

By Crystal Lindell

American women are more likely than men to experience chronic pain and high-impact pain severe enough to disrupt their lives. Americans of both sexes are also more likely to have pain if they live in rural areas, are over age 65, and of American Indian or Alaska Native descent. 

Those are the findings in a new report from the Centers for Disease Control and Prevention, which found that 24.3% of U.S. adults (60 million people) experienced chronic pain in 2023, while 8.5% (21 million) experienced high-impact pain that limited their daily life and work activities. 

What the report doesn’t tell you is that pain rates have risen dramatically since 2016, the year the CDC introduced its controversial opioid prescribing guideline, which drastically reduced patient access to opioids. Not only has the guideline failed to reduce overdoses, it appears to have worsened pain care for millions of Americans.

In 2016, the National Health Interview Survey estimated that 20.4% (50.0 million) of U.S. adults had chronic pain, while 8% (19.6 million) had high-impact chronic pain. What that essentially means is that 10 million more Americans have chronic pain today than in 2016, and 1.4 million more people have debilitating pain.

The CDC report does not speculate about why pain rates have increased, but a recent study that looked at the same survey data offers some insight, suggesting the increase is due to a number of factors, such as long Covid, more sedentary lifestyles, more anxiety and stress, and reduced access to healthcare.

“The widely-cited 20% prevalence of CP (chronic pain) in the adult US population appears obsolete,” wrote co-authors Anna Zajacova, PhD, and Hanna Grol-Prokopczyk, PhD, in medRxiv. “Our findings indicated that chronic pain, already a widespread issue, has reached new heights in the post-pandemic era, necessitating urgent attention and intervention strategies to address and alleviate this growing health crisis.”

While the CDC report neglects to cover the causes of pain, it does provide a detailed look at chronic pain rates by sex, race, age, and location.  For example, researchers found that people aged 65 and older are three times more likely to have chronic pain than young adults, while Whites are more likely to have pain than Blacks, Hispanics and Asians.

Chronic and High-Impact Pain by Sex:

• Women: 25.4% and 9.6%

• Men: 23.2% and 7.3%

Chronic and High-Impact Pain by Age:

• Ages 18–29: 12.3% and 3.0%

• Ages 30–44: 18.3% and 4.9%

• Ages 45–64: 28.7% and 11.3%

• Ages 65 and older: 36% and 13.5%

Chronic and High-Impact Pain by Race: 

• American Indian and Alaska Native: 30.7% and 12.7%

• White: 28% and 9.5%

• Black: 21.7% and 8.7%

• Hispanic: 17.1% and 6.5%

• Asian: 11.8% and 2.6%

Whether you live in a city, suburb or rural area also affects pain rates, with rural Americans significantly more likely to have chronic pain than those who live in cities. In the CDC study, large metropolitan areas of one million or more people are categorized as “central” or “fringe” counties. Medium and small metropolitan areas are counties with 250,000–999,999 people or less than 250,000 people, respectively. Non-metropolitan areas are rural counties with significantly fewer people.

Chronic Pain by Urban Area:

• Large central metropolitan area: 20.5% 

• Large fringe metropolitan area: 22.5%

• Medium and small metropolitan area: 26.4% 

• Non-metropolitan area: 31.4%

The CDC does not address the impact of chronic pain in its bare-bones report. But independent researchers Anna Zajacova and Hanna Grol-Prokopczyk do in their analysis, pointing out that pain “profoundly impacts” physical, mental and cognitive health, as well as employment, relationships, sexual function and sleep. It all adds up to an economic impact of $560-$635 billion annually — more than any other health condition.

“The findings are a call to action for public health professionals, policymakers, and researchers to further investigate the root causes of this increase. Addressing the rise in chronic pain is critical, as pain serves as a sensitive barometer of population health and has profound economic, social, and health consequences,” they wrote.

Unnecessary Back Surgeries Performed Every 8 Minutes at U.S. Hospitals

By Pat Anson

Over 200,000 unnecessary or “low value” back surgeries have been performed on older patients at U.S. hospitals over the last three years, about one procedure every eight minutes, according to a new report.

The analysis by the Lown Institute estimates the potential cost to Medicare at $2 billion for unnecessary spinal fusions, laminectomies and vertebroplasties. The procedures either fuse vertebrae together, remove part of a vertebra (laminectomy), or inject bone-like cement into fractured vertebrae (vertebroplasty) to stabilize them.

Lown maintains that fusions and laminectomies have little or no benefit for low-back pain caused by aging, while patients with spinal fractures caused by osteoporosis receive little benefit from vertebroplasties.

“We trust that our doctors make decisions based on the best available evidence, but that’s not always the case,” said Vikas Saini, MD, president of the Lown Institute, an independent think tank that analyzed Medicare and Medicare Advantage claims from 2019 to 2022.  

“In spinal surgery, as with other fields of medicine, physicians routinely overlook evidence to make exceptions, sometimes at shockingly high rates. This type of waste in Medicare is costly, both in terms of spending, and in risk to patients.”

Up to 30 million Americans receive medical care for spine problems each year. While surgery is appropriate for some, the Lown Institute considers many common surgeries overused and of low value to patients. Potential risks include infection, blood clots, stroke, heart and lung problems, paralysis and even death.

Spinal fusions and laminectomies are considered useful for patients who have low back pain caused by trauma, herniated discs, discitis, spondylosis, myelopathy, radiculopathy and scoliosis. Fusions are also appropriate for patients with spinal stenosis from neural claudication and spondylolisthesis; and laminectomies are appropriate for patients with stenosis who have neural claudication.

Wide Variation in Overuse Rates

Nationwide, about 14% of spinal fusions/laminectomies met the criteria for overuse, while 11% of surgery patients with osteoporosis received an unnecessary vertebroplasty.  

The Lown Institute found a wide variation in overuse rates at some of the nation’s largest and most prestigious hospitals. UC San Diego, for example, had a 1.2% overuse rate for fusions and laminectomies; while the Hospital of the University of Pennsylvania had a 32.6% overuse rate.

The largest overuse rate was at Mt. Nittany Medical Center in Pennsylvania, where nearly two-thirds (62.8%) of the fusions and laminectomies were considered inappropriate or of low value.

The Lown report found that over 3,400 doctors performed a high number of low-value back surgeries. Those physicians received a total of $64 million from device and drug companies for consulting, speaking fees, meals and travel, according to Open Payments. Three companies — Nuvasive, Medtronic and Stryker — paid over $22 million to doctors who performed the unnecessary surgeries.

Previous reports by the Lown Institute have also questioned the value of procedures such as knee arthroscopies, a type of “keyhole” surgery in which a small incision is made in the knee to repair ligaments. Research has found that arthroscopic surgeries provide only temporary relief from knee pain and do not improve function long-term.

The American Hospital Association takes a dim view of Lown studies, calling the data cherry-picked and misleading.

ER Opioids ‘Extremely Unlikely’ to Lead to Addiction

By Pat Anson

Many patients in pain have horror stories to share about their experiences in hospital emergency rooms, where they’ve been treated as drug seekers and denied opioid medication.

“I had a broken arm and was given nothing for pain when leaving the emergency room,” one patient told us. “They now treat everyone like a drug seeking addict even if you have legitimate pain!”

“My last ER visit has caused me PTSD. It was awful they put me in a room and turned the light off and left me there for hours,” said another.

“The emergency rooms are horrible,” said a patient with a fractured rib. “I wasn’t even asking the ER for meds. I wanted an x-ray or something because I was in excruciating pain.”

Are fears about opioid addiction justified? A new study found that the risk of developing opioid use disorder after being treated with intravenous opioids in the ER is quite low – less than one-tenth of one percent (0.002%).

Out of 506 patients treated with IV opioids in two Bronx emergency rooms, only one met the criteria for long-term or persistent opioid use six months later.

“These data suggest that the use of IV opioids for acute pain among opioid-naive patients is extremely unlikely to result in persistent opioid use,” wrote lead author Eddie Irizarry, MD, an emergency medicine physician at Montefiore Medical Center.

“Opioid naïve” means the patients had never taken opioids before or only used the drugs infrequently.

The study, recently published in The Journal of Emergency Medicine, defines persistent use as filling six or more opioid prescriptions in the 6 months after an ER visit, or an average of one prescription per month.

The most frequently reported IV opioid administered in the ER was morphine (94%), followed by hydromorphone (4%) or a combination of both morphine and hydromorphone (2%). The researchers noted that most of the morphine doses were “relatively modest.”

After being treated in the ER, 63 of the patients (12%) received an opioid prescription on discharge.   

The researchers cautioned that opioids should be used “judiciously” and that many ER patients could be treated with non-opioid analgesics such as acetaminophen. But they could find no evidence that IV opioids should be routinely denied in the ER.

“We are not aware of compelling data to support denying parenteral opioids to opioid-naïve patients who are suffering from severe acute pain,” said Irizarry.   

The research mirrors the findings from a 2017 Mayo Clinic study, which found that the risk of long-term opioid use is lower for ER patients than it is for patients treated in other medical settings. In the Mayo study, 1.1% of opioid naive patients became long term users. That compares to 2% of patients who were prescribed opioids in non-emergency settings.

FDA’s New Rules Aim to Make Pharma Ads Easier to Understand

By Crystal Lindell

The Food and Drug Administration is hoping that its new rules will make pharmaceutical ads on TV and radio easier to understand. 

Commercials for pharmaceutical drugs must now include a “major statement” about side effects and contraindications in “a clear, conspicuous, and neutral manner.” The rule applies to direct-to-consumer (DTC) ads for prescription drugs and what conditions they are used to treat. 

The new regulations are a response to something many drug makers figured out long ago: people tend to tune out when they start to hear a long list of potential side effects and interactions, which are usually rushed through at the end of drug commercials. By then, consumers may have tuned out the downsides of the medication. 

“If you’re a company and you’re worried about possible FDA enforcement or product liability and other litigation, all your incentives are to say more, not less,” Torrey Cope, a food and drug lawyer, told the AP.

The law firm Lerman Senter broke down the five new standards the FDA requires companies to meet in drug ads. All commercials must now include:

1. Consumer Friendly Language: Ads must clearly state the name of the drug, and a major statement of side effects must be presented in language that is readily understandable. It should not include technical or medical jargon.
   

2. Understandable Audio: Audio information must be understandable in terms of volume, articulation and pacing, and should be as understandable as the rest of the commercial. “Rapid fire” disclosures will no longer be permitted.
   

3. Major Statement Must Be Presented Concurrently in Text and Audio: Television ads must present the major statement simultaneously in the audio and visual sections.
   

4. Text Must Be Easily Readable: The on-screen text must be presented against a contrasting background for sufficient duration, and in a font size and style that is easily readable.
   

5. No Distractions. Advertisements cannot have statements, text, images or sounds that detract from comprehension of the major statement. No other sounds, including music or catchy jingles, should be heard during the side effects disclosure.

While the rule went into effect a few months ago, companies have until November 20 to be in full compliance. So while you may have already noticed pharma ads changing, all of them should be in compliance starting this week. 

In its report about the changes, the FDA said that while drug ads often have a caveat urging people to “ask your doctor” about a medication, pharmaceutical companies are incentivized to make the ads deceptive in various ways. 

“Like all advertisers, prescription drug firms have ample business incentives to present their products in a positive light to potential consumers,” the FDA said. “But those business incentives do not assure clear communication of the advertised drug’s negative attributes to consumers.”

While no federal law has ever banned pharmaceutical companies from directly advertising to consumers, the practice didn't really take off until about 40 years ago. Currently, the United States and New Zealand are the only two countries that allow DTC drug advertising. 

In its report, “Background on Drug Advertising,” the FDA explains: 

"Until the mid-1980s, drug companies gave information about prescription drugs only to doctors and pharmacists. When these professionals thought it appropriate, they gave that information to their patients. However, during the 1980s, some drug companies started to give the general public more direct access to this information through DTC ads."

As someone who was born in the mid 1980s, I remember being surprised as an adult when I learned that most other countries ban pharma companies from advertising directly to consumers. 

While it’s difficult to imagine that the U.S. would ever ban the ads completely, there’s definitely a good case for heavily regulating them. A 2005 study found pharmaceutical ads that encouraged consumers to talk with their doctors “have a profound effect on physician prescribing” and could promote overuse or inappropriate prescribing.

In other words, drug companies are very good at creating ads that make people want to buy their products, whether they need them or not. Let’s be real: if drug advertising didn’t work, companies would not be spending over $15 billion a year promoting their medications. 

I’m glad to see the FDA amping up these regulations, so people have a better understanding of drug ads. But it remains to be seen how these agency regulations will hold up under the incoming Trump administration.   

Will Trump Let RFK Jr. ‘Go Wild’ with Public Health?

By Arthur Allen, KFF Health News

Many scientists at the federal health agencies await the second Donald Trump administration with dread as well as uncertainty over how the president-elect will reconcile starkly different philosophies among the leaders of his team.

Trump announced Thursday he’ll nominate Robert F. Kennedy Jr. to be secretary of the Health and Human Services Department, after saying during his campaign he’d let the anti-vaccine activist “go wild” on medicines, food, and health.

Should Kennedy win Senate confirmation, his critics say a radical anti-establishment medical movement with roots in past centuries would take power, threatening the achievements of a science-based public health order painstakingly built since World War II.

Trump said in a post on the social platform X that “Americans have been crushed by the industrial food complex and drug companies who have engaged in deception, misinformation, and disinformation when it comes to Public Health,” echoing Kennedy’s complaints about the medical establishment. The former Democratic presidential candidate will “end the Chronic Disease epidemic” and “Make American Great and Healthy Again!” Trump wrote.

Vaccine makers’ stocks dipped Thursday afternoon amid news reports ahead of Trump’s RFK announcement.

If Kennedy makes good on his vision for transforming public health, childhood vaccine mandates could wither. New vaccines might never win approval, even as the FDA allows dangerous or inefficient therapies onto the market. Agency websites could trumpet unproven or debunked health ideas. And if Trump’s plan to weaken civil service rights goes through, anyone who questions these decisions could be summarily fired.

“Never has anybody like RFK Jr. gotten anywhere close to the position he may be in to actually shape policy,” said Lewis Grossman, a law professor at American University and the author of “Choose Your Medicine,” a history of U.S. public health.

Kennedy and an adviser Calley Means, a health care entrepreneur, say dramatic changes are needed because of the high levels of chronic disease in the United States. Government agencies have corruptly tolerated or promoted unhealthy diets and dangerous drugs and vaccines, they say.

Means and Kennedy did not respond to requests for comment. Four conservative members of the first Trump health bureaucracy spoke on condition of anonymity. They eagerly welcomed the former president’s return but voiced few opinions about specific policies. Days after last week’s election, RFK Jr. announced that the Trump administration would immediately fire and replace 600 National Institutes of Health officials. He set up a website seeking crowdsourced nominees for federal appointments, with a host of vaccination foes and chiropractors among the early favorites.

At meetings last week at Mar-a-Lago involving Elon Musk, Tucker Carlson, Donald Trump Jr., Kennedy, and Means, according to Politico, some candidates for leading health posts included Jay Bhattacharya, a Stanford University scientist who opposed covid lockdowns; Florida Surgeon General Joseph Ladapo, who opposes mRNA covid vaccines and rejected well-established disease control practices during a measles outbreak; Johns Hopkins University surgeon Marty Makary; and Means’ sister, Stanford-trained surgeon and health guru Casey Means.

All are mavericks of a sort, though their ideas are not uniform. Yet the notion that they could elbow aside a century of science-based health policy is profoundly troubling to many health professionals. They see Kennedy’s presence at the heart of the Trump transition as a triumph of the “medical freedom” movement, which arose in opposition to the Progressive Era idea that experts should guide health care policy and practices.

It could represent a turning away from the expectation that mainstream doctors be respected for their specialized knowledge, said Howard Markel, an emeritus professor of pediatrics and history at the University of Michigan, who began his clinical career treating AIDS patients and ended it after suffering a yearlong bout of long covid.

“We’ve gone back to the idea of ‘every man his own doctor,’” he said, referring to a phrase that gained currency in the 19th century. It was a bad idea then and it’s even worse now, he said.

“What does that do to the morale of scientists?” Markel asked. The public health agencies, largely a post-WWII legacy, are “remarkable institutions, but you can screw up these systems, not just by defunding them but by deflating the true patriots who work in them.”

FDA Commissioner Robert Califf told a conference on Nov. 12 that he worried about mass firings at the FDA. “I’m biased, but I feel like the FDA is sort of at peak performance right now,” he said. At a conference the next day, CDC Director Mandy Cohen reminded listeners of the horrors of vaccine-preventable diseases like measles and polio. “I don’t want to have to see us go backward in order to remind ourselves that vaccines work,” she said.

Stocks of some the biggest vaccine developers fell after news outlets led by Politico reported that the RFK pick was expected. Moderna, the developer of one of the most popular covid-19 vaccines, closed down 5.6%. Pfizer, another covid vaccine manufacturer, fell 2.6%. GSK, the producer of vaccines protecting against respiratory syncytial virus, hepatitis A and B, rotavirus, and influenza, fell just over 2%. French drug company Sanofi, whose website boasts its products vaccinate over 500 million annually, tumbled nearly 3.5%.

Exodus From Health Agencies?

With uncertainty over the direction of their agencies, many older scientists at the NIH, FDA, and Centers for Disease Control and Prevention are considering retirement, said a senior NIH scientist who spoke on the condition of anonymity for fear of losing his job.

“Everybody I talk to sort of takes a deep breath and says, ‘It doesn’t look good,’” the official said.

“I hear of many people getting CVs ready,” said Arthur Caplan, a professor of bioethics at New York University. They include two of his former students who now work at the FDA, Caplan said.

Others, such as Georges Benjamin, executive director of the American Public Health Association, have voiced wait-and-see attitudes. “We worked with the Trump administration last time. There were times things worked reasonably well,” he said, “and times when things were chaotic, particularly during covid.” Any wholesale deregulation efforts in public health would be politically risky for Trump, he said, because when administrations “screw things up, people get sick and die.”

At the FDA, at least, “it’s very hard to make seismic changes,” former FDA chief counsel Dan Troy said.

But the administration could score easy libertarian-tinged wins by, for example, telling its new FDA chief to reverse the agency’s refusal to approve the psychedelic drug MDMA from the company Lykos. Access to psychedelics to treat post-traumatic stress disorder has grabbed the interest of many veterans. Vitamins and supplements, already only lightly regulated, will probably get even more of a free pass from the next Trump FDA.

‘Medical Freedom’ vs ‘Nanny State‘

Trump’s health influencers are not monolithic. Analysts see potential clashes among Kennedy, Musk, and more traditional GOP voices. Casey Means, a “holistic” MD at the center of Kennedy’s “Make America Healthy Again” team, calls for the government to cut ties with industry and remove sugar, processed food, and toxic substances from American diets. Republicans lampooned such policies as exemplifying a “nanny state” when Mike Bloomberg promoted them as mayor of New York City.

Both the libertarian and “medical freedom” wings oppose aspects of regulation, but Silicon Valley biotech supporters of Trump, like Samuel Hammond of the Foundation for American Innovation, have pressed the agency to speed drug and device approvals, while Kennedy’s team says the FDA and other agencies have been “captured” by industry, resulting in dangerous and unnecessary drugs, vaccines, and devices on the market.

Kennedy and Casey Means want to end industry user fees that pay for drug and device rules and support nearly half the FDA’s $7.2 billion budget. It’s unclear whether Congress would make up the shortfall at a time when Trump and Musk have vowed to slash government programs. User fees are set by laws Congress passes every five years, most recently in 2022.

The industry supports the user-fee system, which bolsters FDA staffing and speeds product approvals. Writing new rules “requires an enormous amount of time, effort, energy, and collaboration” by FDA staff, Troy said. Policy changes made through informal “guidance” alone are not binding, he added.

Kennedy and the Means siblings have suggested overhauling agricultural policies so that they incentivize the cultivation of organic vegetables instead of industrial corn and soy, but “I don’t think they’ll be very influential in that area,” Caplan said. “Big Ag is a powerful entrenched industry, and they aren’t interested in changing.”

“There’s a fine line between the libertarian impulse of the ‘medical freedom’ types and advocating a reformation of American bodies, which is definitely ‘nanny state’ territory,” said historian Robert Johnston of the University of Illinois-Chicago.

Specific federal agencies are likely to face major changes. Republicans want to trim the NIH’s 27 research institutes and centers to 15, slashing Anthony Fauci’s legacy by splitting the National Institute of Allergy and Infectious Diseases, which he led for 38 years, into two or three pieces.

Numerous past attempts to slim down the NIH have failed in the face of campaigns by patients, researchers, and doctors. GOP lawmakers have advocated substantial cuts to the CDC budget in recent years, including an end to funding gun violence, climate change, and health equity research. If carried out, Project 2025, a policy blueprint from the conservative Heritage Foundation, would divide the agency into data-collecting and health-promoting arms. The CDC has limited clout in Washington, although former CDC directors and public health officials are defending its value.

“It would be surprising if CDC wasn’t on the radar” for potential change, said Anne Schuchat, a former principal deputy director of the agency, who retired in 2021.

The CDC’s workforce is “very employable” and might start to look for other work if “their area of focus is going to be either cut or changed,” she said.

‘It Won’t Be Harmless’

Kennedy’s attacks on HHS and its agencies as corrupted tools of the drug industry, and his demands that the FDA allow access to scientifically controversial drugs, are closely reminiscent of the 1970s campaign by conservative champions of Laetrile, a dangerous and ineffective apricot-pit derivative touted as a cancer treatment.

Just as Kennedy championed off-patent drugs like ivermectin and hydroxychloroquine to treat covid, Laetrile’s defenders claimed that the FDA and a profit-seeking industry were conspiring to suppress a cheaper alternative.

The public and industry have often been skeptical of health regulatory agencies over the decades, Grossman said. The agencies succeed best when they are called in to fix things — particularly after bad medicine kills or damages children, he said.

The 1902 Biologics Control Act, which created the NIH’s forerunner, was enacted in response to smallpox vaccine contamination that killed at least nine children in Camden, New Jersey. Child poisonings linked to the antifreeze solvent for a sulfa drug prompted the modern FDA’s creation in 1938. The agency, in 1962, acquired the power to demand evidence of safety and efficacy before the marketing of drugs after the thalidomide disaster, in which children of pregnant women taking the anti-nausea drug were born with terribly malformed limbs.

If vaccination rates plummet and measles and whooping cough outbreaks proliferate, babies could die or suffer brain damage.

“It won’t be harmless for the administration to broadly attack public health,” said Alfredo Morabia, a professor of epidemiology at Columbia University and the editor-in-chief of the American Journal of Public Health. “It would be like taking away your house insurance.”

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

The 'Nocebo Effect’ and Irritable Bowel Syndrome

By Dr. Caroline Seiler

Many people find that wheat or gluten cause them to react in some way: Some people have a wheat allergy, some have the autoimmune condition celiac disease, but the majority find they have some sort of intolerance or sensitivity to wheat and gluten.

This is challenging to diagnose because there still aren’t any reliable biomarkers to confirm gluten or wheat sensitivity, and clinicians typically rely on patient self-reports.

In irritable bowel syndrome (IBS), patients experience gastrointestinal symptoms without any visible damage to the digestive tract. Many patients with IBS believe that specific foods, like gluten or wheat, trigger their symptoms, prompting them to exclude these foods from their diets without consulting a dietitian or their doctor.

Unsurprisingly, about a third of IBS patients develop disordered eating habits and perceptions about food that may cause symptoms in and of themselves, such as orthorexia, or an unhealthy preoccupation with healthy eating. This may cause a “nocebo effect,” where patients experience symptoms due to their beliefs and expectations about a substance they assume is causing their issues but is actually inert — a “nocebo.”

As a nutrition researcher at McMaster University’s Farncombe Institute, I’m a member of a team that ran a clinical trial to find out whether wheat, gluten or a gluten-free nocebo caused symptoms in IBS. And the results were surprising: even though some patients experienced worse symptoms from gluten or wheat, they weren’t very different from the nocebo, with similar proportions of patients reacting to each.

These results are similar to other published studies. Identifying the true sensitivities for patients with IBS is a controversial research area, with some studies finding gluten avoidance to be beneficial versus others finding it to have no significant effect.

Researchers from the United Kingdom and the Netherlands published an innovative study from the Lancet medical journal. Patients with reported gluten sensitivity were divided into four groups: Two groups were given gluten-free bread, but one of these groups was told it contained gluten and one was told it didn’t. Two other groups were given bread that did contain gluten, with one group believing it was gluten-free and the other believing it contained gluten.

The results showed that the patients who ate gluten and were also told they were eating gluten had significantly worse symptoms than the other three groups.

Gluten Misinformation

Given the controversial evidence that not only gluten, but other wheat components like fermentable carbohydrates or immune-stimulating proteins, may exacerbate IBS symptoms, it’s possible for this hot topic to get blown out of proportion or taken out of context, contributing to nutrition misinformation.

All of these factors — that it is often diagnosed by excluding all other options, the significant psychological component, the division in the scientific community and clinicians who often discount patients’ experiences — make treatment difficult for patients with this disorder.

As a result, patients with IBS are often left to navigate conflicting online resources and test new diets to treat their symptoms. When researchers challenge patients with gluten, wheat or a nocebo, they rarely report the personalized results back to the patients and see how this information impacts patient behaviour.

At McMaster University, we wanted to see how presenting personalized nutrition information would affect our patients. After providing them with personal results about their gluten and wheat reactions, we followed up with patients after six months or more to see how this impacted their beliefs, behaviours and symptoms.

Again, we were in for a surprise! Patients largely kept similar beliefs about gluten, maintained a gluten-free diet and had consistent symptoms even after learning that most of them did not react to gluten or wheat. This begs the question: when people more generally learn new information that conflicts with an existing belief, what may help them to change accordingly?

Psychological Treatment

IBS has been long understood as a disorder of the gut-brain interaction. Psychological treatments are being increasingly investigated to minimize patient fears of foods, or nocebo effects, and to treat IBS symptoms more generally. At Harvard, a recent study found that exposure-based cognitive behavioural therapy (CBT) showed promise to improve IBS symptoms in five sessions with a nurse practitioner.

Similarly, CBT correlated with shifts in brain networks and the gut microbiome, or gut bacteria, that were also correlated with improvements in gastrointestinal symptoms. At the University of Calgary, virtually delivered yoga was highly feasible and helped improve symptoms for patients with IBS.

However, IBS is a complex disorder which may be exacerbated due to many different causes, and psychological treatment will likely be only one component of an effective treatment plan for many patients.

Diet plays an important role in human health, but how it does so — especially among those with gastrointestinal diseases — becomes complicated by the emotional aspects of eating and the real needs for people to have nutritious, well-balanced diets without risking malnutrition. If you have concerns that certain foods, like gluten, trigger your symptoms, it’s a good idea to consult your doctor or a registered dietitian.

Caroline Seiler, PhD, is a clinical researcher who studied at McMaster University in Ontario, Canada. She receives funding from the Canadian Institutes of Health Research.

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

The Stress of Navigating Opioid Shortages As a Patient

By Crystal Lindell

At 9:30 am Monday morning, I got one of the most dreaded phone calls that someone taking a controlled substance can get – my pharmacy was completely out of my pain medication, Morphine Sul ER. 

Chronic shortages of prescription opioids were finally impacting me directly. 

At first, the pharmacist tried to make it sound like there was just a small delay, asking me, “How how many pills you have left?”

None. I had none left. Because pain medication refills usually aren’t filled until you completely run out. There’s not even a one-day leeway built in, because god forbid pain patients have one extra pill ever. 

Even if I did have some left, I couldn’t tell the pharmacist that, because it might risk having that used against me later. Afterall, if I had extras, that shows that I don’t need to be prescribed as many pills as I was getting. 

You’re always risking something as a pain patient. If you try to plan too far ahead by stockpiling extra pills, they could use that to reduce what you’re prescribed. And if you don’t plan ahead at all, you risk physical pain and withdrawal if there are any issues getting your refill – issues beyond your control like a drug shortage. 

As it turned out, it wouldn’t have mattered if I did have some pills leftover because the situation was worse than the pharmacist was initially letting on. This wasn’t an issue of waiting for an afternoon shipment or even a next-day restock. The pharmacist didn’t know when my medication would be back in stock at all. 

She said she had been requesting more pain medication every day, but their supplier wasn’t providing any updates on a timeline for when that would happen. So she suggested that I call around to other pharmacies to see if any of them had it in stock. 

There’s just one problem: the pain contract I had to sign to get a monthly opioid prescription technically bans me from getting refills at different pharmacies. I don’t think there are any exceptions in the contract. And if I break it, I risk losing access to the only medication that makes it possible for me to function on a daily basis. 

So even if I could find another pharmacy, I wasn’t sure if my doctor would let me get the medication filled there. 

The pharmacist was surprisingly understanding of this, and said that she had already called my doctor before calling me, so she was hopeful that they would be accommodating. 

At that point I realized that any plans I had for my Monday morning were now canceled, because I was going to have to spend the next few hours trying to navigate this. 

I made one last attempt to get the situation resolved without having to loop in another pharmacy, asking if they had an alternative medication that wasn’t too expensive because I don’t have health insurance. My medication is an extended release opioid, and the pharmacists said all they really had was the instant-release versions – which I knew my doctor would not want to swap in.

So, another pharmacy it would have to be. 

I did wonder for a moment if my pharmacy was lying to me about being out of stock. It was just last month that I had to negotiate the price of this same medication with them after they tried to increase the price by $50. 

Maybe they just didn’t want to deal with me, a long-term opioid patient, any more. So after the attempted price increase failed to deter me, they were trying a different tactic. 

The thing is, how would I even find that out? As far as I know, there’s no accountability for pharmacies that lie to patients about why they aren’t able to fill a prescription. Most people understand why that’s concerning when it comes to things like birth control or insulin, but when it’s pain medication, the general public tends to side with the pharmacist who doesn’t want to fill the prescription. 

At that point, I started calling other pharmacies. Thankfully, a locally owned one said they had the medication in stock and that they could fill it. I called my doctor to see if they’d transfer the prescription, and his receptionist took down the message. Then, I waited. 

I spent the next few hours anxious about whether this would all work out, and how long it would be until I got my refill. Finally, at about 1 pm, I saw in MyChart that the medication had been sent to the new pharmacy. 

Then I called the new pharmacy to make sure they saw my prescription come through and to ask what the cash price was. It was going to be $52, about $16 more than I paid at the other pharmacy. I probably could have asked them about using a GoodRx coupon, but I was already throwing a controlled substance prescription on them at the last minute, and they had it in stock, so I didn’t want to make waves. 

A few hours later it was finally filled, sort of. At 3 pm I arrived at the pharmacy to pick it up, after driving 25 minutes on rural roads to get there. 

They handed me the bottle and said, “Oh, by the way, we’re two pills short. Hopefully we will have those in for you later this week. So you can come back and pick them up then.”

Another 50 minutes of round-trip driving was suddenly in my future. 

I’m thankful that I found a pharmacy with any of my medication in stock, and I’m happy that my doctor seemed to handle the prescription transfer without issue. 

What Happens Next Month?

But the entire, stressful ordeal wiped out most of my day, and now I also have to figure out what will happen next month. 

Will the shortage impacting my medication be handled by then? Or should I try to have my doctor switch my prescription to something else? And if he did that, how much would that medication cost? Should I have my prescriptions permanently transferred to the other pharmacy? Is the one I normally go to going to give me a hassle every month now?

If medication shortages don’t impact you directly, it can be easy to gloss over reports like the one from the American Society of Health-System Pharmacists (ASHP), which found that shortages of drugs used for pain, anesthesia, chemotherapy and attention-deficit/hyperactivity disorder (ADHD) “continue to be problematic.” 

Those shortages impact real people. Despite a stressful morning, I was among the lucky ones, as I was able to get it worked out within just one day. Who knows if that will be the case next month though. 

The ASHP cited reduced DEA production quotas and the fallout from opioid litigation as some of the reasons for the drug shortages, which have led to rationing at many pharmacies. In a recent PNN survey, 90% of patients with an opioid prescription said they had trouble getting it filled at a pharmacy.

We need the government to start working on behalf of patients to get this resolved. I can’t just call up the manufacturer of Morphine Sul ER and tell them to make more. It has to be the government that intervenes. 

The best place to start would be to lift the DEA production quotas – although that’s really just a start. If we’re being realistic here, there should also be production minimums, with government funding and support if needed. 

People’s lives depend on these medications. It’s time to stop pretending that these drug shortages are just trivial inconveniences. They’re harmful, and sometimes even deadly.

A Pained Life: Can They Feel What We Feel?

By Carol Levy

How many times have I seen a post or comment in a chronic pain support group that read: “I wish the doctor (or my family, colleagues, friends) could go through this to really understand how I feel.”

I also wish they could, but is there any way such a thing could be accomplished?

Then I read about a course at a Japanese medical school, in which students pretended to be patients and were hospitalized for two days and one night. Students learned firsthand the stress, anxiety and loss of control that comes with being a hospital patient — like being poked and prodded, being told when to sleep, when it was time to get an x-ray, to have blood taken or bandages changed.

Students also observed “the distress of other inpatients” and the “psychological pressure” they felt from physicians. This was meant to enhance their empathy skills and to further their professional development.

It sounds like a good idea. But it's not reality.

Maybe in some form, the course replicates Philip Zimdardo's 1971 prison experiment, in which Stanford students were assigned to be prisoners or guards in a simulated prison. The study was meant to focus on the power of roles and rules, but was ended early because of the behavior that emerged in both groups.

Very quickly the students who were “guards” acted like guards by asserting their control and abusing their power. And many of the “prisoners” acted like prisoners, showing signs of distress from the powerlessness that comes from being ruled by guards

Our pain can also make us feel powerless, especially when it comes to treatment and getting the medications that we need. In that regard, we are indeed powerless. The doctors and pharmacists have all the power.

When we are hospitalized, it often intensifies that feeling of powerlessness. We are “imprisoned” in the hospital and not allowed to leave until someone in power gives us permission. We are in the hands of people who decide what we can do, where we can go, and if our cries of pain will be attended to or not.

They may be called doctors or nurses, but in a very true sense they are guards. Our freedom and health in are in their hands.

Is there really a way to replicate for others how we feel, what we go through?

In a promo for the new TV series “Brilliant Minds,” Dr. Wolf, the main character, says he wants to know what his patients are feeling, so he can feel it himself.

My first thought was that would be great if it was doable. But then I thought about it more deeply. There is no way it could work. A doctor can go into the hospital as a pretend patient, even allow himself to have medically induced pain, but they will always know it is just an experiment. Their pain will end, they can go home when they want, and they will feel fine.

It would make life so much easier for us if others could feel our pain. Absent compassion and empathy, I don't see how it is possible.

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. 

More Americans Have Chronic Pain Than Ever Before

By Pat Anson

Rates of chronic pain and high-impact pain have risen sharply in the United States since the start of the COVID-19 pandemic, which is likely due to an increase in sedentary lifestyles, anxiety and reduced access to healthcare.

In a study preprinted in medRxiv, researchers estimate that 60 million Americans in 2023 had chronic pain, up from 50 million in 2019. The study is based on results from 2019, 2021 and 2023 National Health Interview Surveys (NHIS) of a nationally representative sample of about 88,500 U.S. adults.

Caution is warranted when research is preprinted before undergoing peer-review, but the findings here are startling. Rates of chronic pain (CP) rose from 20.6% in 2019 (before the pandemic), to 20.9% in 2021, and surged to 24.3% in 2023.

High impact chronic pain (HICP), which is pain strong enough to limit daily life and work activity, rose from 7.5% of adults in 2019 to 8.5% in 2023. That translates to 21 million Americans living with debilitating pain.

“Chronic pain and high-impact chronic pain surged dramatically after the COVID pandemic. The widely-cited 20% prevalence of CP in the adult US population appears obsolete,” wrote co-authors Anna Zajacova, PhD, at Western University in Ontario and Hanna Grol-Prokopczyk, PhD, at the University of Buffalo.

“Our findings indicated that chronic pain, already a widespread issue, has reached new heights in the post-pandemic era, necessitating urgent attention and intervention strategies to address and alleviate this growing health crisis.”

The increases in pain occurred in almost all body areas, such as the head, abdomen, back, arms, hands, hips, knees and feet, except for jaw and dental pain. All age groups and both sexes were affected.  

SOURCE: medRxiv

Researchers say being infected with COVID or having long COVID played a significant role in the increases, but social and economic causes may have also been at work. Pain could have worsened due to anxiety, depression, loneliness, physical inactivity and reduced access to health care, as well as inflation and economic hardships caused by the pandemic.

“The 2023 surge is not restricted to specific demographics or body sites — it is widespread across the population subgroups and affects all examined pain sites except jaw/dental pain. Further, the increase persisted even after accounting for potential drivers such as COVID-19 infections, socioeconomic factors, and other potentially important covariates such as mental health or health behaviors. This suggests that a broader, more complex set of factors may be at play,” researchers reported.

“Thus, while the viral infections certainly had an impact, other societal and lifestyle changes that occurred during and after the pandemic may have contributed to the increase in pain. The role of increased social isolation and loneliness, disrupted health care access, and heightened levels of stress and anxiety, all of which were exacerbated by the pandemic, should be explored in future research.”

Although chronic pain rates have surged over the last few years, there has been little response from healthcare providers and regulators. In fact, the just opposite happening. The Food and Drug Administration predicted a 7.9% decline in medical need for opioid pain medication in 2024, and anticipates a 6.6% decrease in demand next year.

The Drug Enforcement Administration uses those FDA estimates when setting its annual production quotas for opioids, which have fallen for eight straight years. Since 2015, the supply of oxycodone has been reduced by over 68% and hydrocodone by nearly 73%.

Many pain patients feel like they’ve been abandoned by the healthcare system, according to a 2023 PNN survey of nearly 3,000 patients or caregivers. About one in five patients have been unable to find a doctor to treat their pain, and 12% say they were abandoned or discharged by a doctor. Many are now hoarding opioid medication or turning to other substances for relief.

Those findings from our survey are now being reflected in the study on rising pain rates.

“The findings are a call to action for public health professionals, policymakers, and researchers to further investigate the root causes of this increase. Addressing the rise in chronic pain is critical, as pain serves as a sensitive barometer of population health and has profound economic, social, and health consequences,” said Zajacova and Hanna Grol-Prokopczyk.