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 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. 

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?

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.

Central Sensitization and Hyperalgesia Are Bogus Medical Terms

By Dr. Forest Tennant

Some 15 years ago, “central sensitization” was a term I first started seeing when I was editor of Practical Pain Management. It was defined as experiencing a pain level above what was normally expected from arthritis, fibromyalgia, neuropathy, and other peripheral (outside the brain) pain conditions. 

When central sensitization was present, it was an indication to more aggressively treat the pain with opioids and/or other measures. Unfortunately, this simple, well-meaning term has been transformed by some unscrupulous practitioners to imply that patients with central sensitization don’t need opioids or other treatment.

Central sensitization also became synonymous with the term “hyperalgesia” – meaning the patient was overreacting or feeling too much pain for their condition. What’s more, opioids were supposedly the cause of hyperalgesia, so they need to be stopped. 

Let’s be very clear. Neither “central sensitization” nor “hyperalgesia” are bonafide medical conditions. A medical condition is one in which there is a common set of symptoms and physical findings, and the condition can be confirmed by a diagnostic test such as an MRI or blood test. 

Central sensitization and hyperalgesia are bogus medical conditions that can’t be objectively identified, quantified, or diagnosed. They are simply terms that sound scientific and authoritative, when in reality they have become fraudulent terms used to justify withholding opioids and other treatments.

It is time patients, families, and physicians reject these terms and the medical practitioners who use them.

Central sensitization is not to be confused with the term “central pain.” This is a serious condition that more likely than not requires opioids, along with great care and concern on the part of the medical practitioner.

“Central pain” initially referred to the emergence of pain after a stroke. Strokes can wipe out and destroy brain tissue that contain opioid receptors and the normal biologic apparatus which shuts down and relieves pain. One especially severe post-stroke pain condition is known as the Dejerine-Roussy Syndrome, which damages the thalamus. 

Opioid drugs, sometimes in high or unusual formulations, are required for post-stroke central pain.

Although central pain was first associated with strokes, it soon became appropriate to include brain tumors, hydrocephalus, and scarring from meningitis infections, since these conditions can also wipe out brain tissue and cause pain.

In recent times, central pain has come to include those pain patients who have developed neuroinflammation and tissue destruction in the brain concomitantly with a peripheral pain problem that may involve the joints, muscles, nerves, or spine.

It is interesting to note that central pain in the past was often called “secondary pain” as it tends to occur after someone has developed a peripheral pain condition. 

The first investigator to elucidate peripheral pain conditions with brain tissue destruction was Apkarian in 2004.He and his colleagues found decreased prefrontal gray matter deficiencies in the brain scans of persons with chronic back pain. 

Since that time, a plethora of brain scan and glial cell studies have found that persons with a peripheral pain condition may experience brain inflammation involving glial cells and tissue destruction — akin to what occurs after a stroke. 

Bona fide central pain is clinically typical and obvious. It is characterized by constant (24/7) pain and high pulse rates, hypertension, episodes of excess sweating, and cold hands and feet.

Prescription opioids, including long-acting opioids, may be required to control bonafide central pain. In addition to opioids, central pain has what is called descending pain, which requires dopamine stimulating drugs to adequately control it. 

The cause of central pain that accompanies or follows the development of a peripheral pain condition is now believed to be related to an autoimmune process and/or viral reactivation, especially from the Epstein-Barr virus.

In summary, central sensitization and hyperalgesia are not bonafide medical conditions. To use these bogus labels to justify the withholding of medications is unscientific, fraudulent and inhumane. 

These terms and the practitioners who use them should be summarily rejected. Central pain is a serious condition characterized by severe constant pain which often requires opioids for pain control. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.   

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section. 

Arachnoiditis: My Not-So-Rare Disease

By Julie Titone

I first heard the word “arachnoiditis” from the spine surgeon who performed my lumbar fusion. This was a virtual office visit. I leaned into my laptop screen to say: “That sounds like a spider.”

“Yes,” he replied.

He had identified the source of my unexpected post-op pain: arachnoiditis, a chronic inflammatory disease that’s even creepier than it sounds. Its symptoms usually arise after spinal trauma due to surgery, injury or commonly prescribed injections. 

More doctors and patients should know about this small chance of a very big problem.

Arachnoiditis is so far incurable, difficult to treat, and can get worse over time. Patients experience lower body numbness and stinging pain that, at its worst, is likened to hot water dripping down the legs. The disease can lead to paralysis and bladder dysfunction. While arachnoiditis is said to be rare, it could simply be under-diagnosed.

The arachnoid is a membrane with a webbed appearance, hence its spidery name. It is part of the sheath that encloses the spinal fluid. Arachnoiditis is the inflammation of that easily annoyed membrane. 

Sometimes it causes free-floating spinal nerves to stick together and become locked down by scar tissue. This is known as adhesive arachnoiditis, the kind I’m describing here.

No one knows how many spinal surgeries result in arachnoiditis, but a common estimate is 3 to 6 percent. Propelled in part by the deteriorating backs of boomers like me, there were more than 340,000 such surgeries in 2023 in the United States. 

Just 4% of that adds up to 13,600 people suffering from arachnoiditis in a single year in a single country. The number doesn’t include cases that emerge after spinal injections of anesthesia or steroids, or after accidents that damage the spine.

‘They Stuck Me Eight Times’

Sara Lewis was a young Florida nurse when, on New Year’s Eve in 2008, she required an emergency Caesarean section. Attempts to give her anesthesia before the surgery did not go well.

“They stuck me eight times to get the spinal block in,” she recalled. 

Lewis left the hospital with a baby boy and excruciating pain. She went back to work, eventually switching to a less-demanding job. By 2014, she couldn’t work at all and didn’t yet have a proper diagnosis. By 2017, she had qualified for disability benefits. Lewis is only 44.

Many women choose epidurals to ease pain during normal vaginal deliveries. Unlike a spinal block, an epidural delivers anesthesia in a space outside the spinal fluid sac. Even that approach poses risk when done poorly.

Arachnoiditis sufferer Steve Lovelace would like women to consider that pain relief during childbirth might not be worth risking a lifetime of suffering. “I know so many women who have children and are in so much pain during what should be the most joyful part of their life,” he said.

Lovelace’s agony started with a freak tree-cutting accident in 1982 on an Oklahoma family farm. His 20-year-old torso was crushed, causing debilitating injuries that required multiple surgeries. 

Now 63 and medically retired from a radiology career, the pioneering para-triathlete has teamed up with Lewis to create the YouTube podcast Arachnoiditis Unfiltered. Given what they endure, they are remarkably chipper co-hosts. Their goals: awareness, prevention and a cure.

Lori Verton aims for those goals, too. Verton lives near Ontario, Canada. In 1999, she was driving out into the dark on a mission to buy milk for her kids. She was injured when her car hit a deer. When her whiplash symptoms didn’t improve, her doctor ordered a spinal tap.

“While I was on the table, I felt my left thigh go numb, my left foot drop, I was incontinent. I knew immediately something was wrong,” she recalled. “They said, ‘We’ve bruised some nerves, it will heal.’”

Heal it did not. She was increasingly disabled by pain and estimates it took five years and a dozen doctors to diagnose arachnoiditis. Largely bedridden at age 42, she went on disability. Having worked as a physiologist and medical researcher, Verton pondered how to put her skills to use. That led to the creation of the Arachnoiditis and Chronic Meningitis Collaborative Research Network.

‘No One Knew Anything About It’

Forrest Tennant, a retired physician, is widely associated with arachnoiditis. The disease is the focus of his small foundation and Arachnoiditis Hope website. 

I watched a video in which Dr. Tennant said one hallmark of arachnoiditis patients is they are always moving. I thought: Ah, he knows us. With pain focused on lower backs, buttocks and legs, many arachnoiditis patients can’t sit comfortably. Nor, if they can stand, can they stay in one spot for long. Some can barely sleep.

I asked Dr. Tennant what spurred his interest in the disease. He said it was the number of people with the same symptoms who were coming into his pain clinic, and the high suicide rate among them. 

“I found out no one was interested in the disease, no one knew anything about it. Patients were so grateful for any help they could get,” he told me.

Dr. Tennant said doctors from around the world contact him, seeking treatment advice. I don’t doubt it. I’ve read journal articles written by doctors from Poland, Brazil and China, scouring the medical literature for anything they can find on the subject. The authors of a recent case study described the literature on the disease as “vague and outdated.”

Dr. Tennant doesn’t dispute the value of injections for spinal pain, but said they can set people up for trouble, especially if they are repeated. He’s seen patients who had as many as 20 epidurals. 

When we talked, I added up my own spinal intrusions. The first was a Caesarean. My preemie baby was arriving upside down and backward, so there seemed no alternative to spinal anesthesia there. 

The second instance was a steroid injection aimed at reducing chronic pain that arose after hip replacement. It was a Hail Mary treatment that didn’t help. 

Finally, in 2024, I had that single-level lumbar fusion. Four doctors had predicted dire health consequences if I didn’t get my spine reinforced. One physician confirmed my arachnoiditis diagnosis. As that surgeon was leaving the exam room he turned and said, “What would bother me is not knowing.” 

In other words, not knowing why I developed arachnoiditis after my back surgery. Most patients don’t.

More Can Be Done

There’s a crying need for research into the causes of arachnoiditis. I find it hard to muster hope for significant advancement in the U.S., where federal health budgets have been slashed. 

Still, there’s much that could be done to prevent and identify the disease. Medical schools could call attention to arachnoiditis as a possible cause of pain. Patients could be asked routinely about their history of spinal injections and counseled on the risks of doing more. All radiologists could be trained to spot arachnoiditis. 

There could be a diagnostic code specific to the disease, making it easier to document and study. Spine surgeons, who know that arachnoiditis is consigning some patients to a lifetime of pain, could lead the charge to determine its cause.

Meanwhile, I’m depleted by stories like Matt’s. The 38-year-old Michigan man asked me not to share his last name, afraid that his disability could lead to job discrimination. 

On July 18, 2023 – he’ll never forget the date – Matt was given steroid injections on both sides of a bulging disk. His back pain immediately increased. Then it spread. Now, he said, “I pretty much avoid doing everything else I used to do in my life, because it hurts.”

As I cope with arachnoiditis, I ponder how to spread the word about it. Maybe this disease needs a simpler name. It definitely could use a champion – so far, no celebrity has joined forces with arachnoiditis patients. If only Spiderman would come to our rescue.

Julie Titone is a former newspaper journalist who also worked in academic and library communications. She is retired and lives in Everett, Washington. Julie’s website is julietitone.weebly.com.

This column first appeared in her Substack blog and is republished with permission. 

Weight Stigma Deters Women From Seeing Doctors

By Crystal Lindell

It’s been happening since I hit puberty, and it never stopped. At every doctor’s appointment I get hit with some version of the infamous question: “Have you thought about trying to lose some weight?”

Sometimes the tone is nice, most of the time it’s condescending.

And my answer is always the same. Yes, I have tried to lose weight.. Of course, I f***ing have. I’m not allowed to exist in our society without constantly thinking about trying to lose weight.

The doctors talk to me like I just woke up in this body yesterday. Like the only thing I needed to finally lose weight was a rude conversation with them.  

The snide comments, dismissive attitude, and annoyed tone as they read your weight aloud are enough to make you want to avoid the doctor all together.

And now a new study puts some data behind that experience.

A team led by researchers at the University of Minnesota found that weight-related stigma does deter women from seeking medical care.

For the study, which was recently published in Medical Research Archives, the researchers surveyed nearly 400 women. The team only studied women because they experience weight stigma more often than men.

They asked participants if they experienced any shaming triggers during medical visits and if there were ways doctors could use to avoid those triggers.

Unsurprisingly, they found women often delay care because of the stigma of being weighed. Nearly a third said they had refused to be weighed at a medical appointment.

Only one in seven (14.2%) reported having positive feelings in healthcare settings, while nearly two-thirds (65.1%) felt negative emotions, using words like “scary,” “embarrassed,” and “disrespected.”

"Stop treating women as if they did something wrong for being heavier,” one woman said.

"I see people discriminated against because of their weight," said another.

"I really appreciate when providers focus on health behaviors rather than just weight," another woman said. 

The study authors suggest that doctors consider when it’s medically necessary to weigh patients. Other simple ways to help ease patient discomfort about weight include:

• Making it clear that being weighed is optional

• Posting a sign above the scale that weight does not determine health

• Not using BMI to determine whether someone is overweight.

• Having furniture and equipment that accommodates all body sizes

“These factors are ones that healthcare systems and providers have direct control over and can remedy to improve healthcare experiences and health outcomes,” said co-author Elizabeth O'Neill, PhD, an associate professor of social work at Washburn University. “Weight-inclusive practices can make a meaningful difference in women’s healthcare satisfaction and utilization.”

The researchers hope their findings will be used to implement policy and procedure changes in healthcare to create an environment that is welcoming for all people, regardless of how much they weigh.

A Patient–Provider Playbook to Improve Diagnosis of Autoimmune Diseases

By Tara Bruner

Millions of people across the United States experience joint pain, fatigue, or stiffness. These symptoms are commonly associated with autoimmune diseases such as rheumatoid arthritis (RA), which affect about 4.6% of the U.S. population. Diagnosing autoimmune conditions remains difficult, with studies indicating that up to 76% of patients receive at least one incorrect diagnosis before the underlying cause is identified.

Such delays in diagnosis can be frustrating and take a toll on both physical and mental health. Delays can also result in significant harm, as conditions like RA may cause irreversible joint damage if not treated promptly. However, advances in diagnostic technology and increased patient engagement are beginning to improve outcomes.

Why Rheumatic Diseases Are Hard to Diagnose

Rheumatic diseases include autoimmune and inflammatory disorders affecting the joints, muscles, tendons, and ligaments. Their early signs frequently resemble common health issues, such as the natural effects of aging, everyday stress, or minor aches and pains. This overlap often leads to the misdiagnosis of symptoms, complicating early detection. Autoimmune diseases don’t follow a script – and vague, shifting symptoms often defy simple explanations.

RA is also frequently confused with other conditions, including osteoarthritis, fibromyalgia, and depression. Research shows that about 20% of patients diagnosed with RA initially receive an incorrect diagnosis. On average, the interval between symptom onset and accurate diagnosis spans about 12 months or longer.

Limited access to rheumatology specialists, particularly in rural or underserved areas, can further delay evaluation. Primary care providers may initially adopt a conservative approach to treatment, recommending rest or symptomatic treatment before pursuing advanced diagnostics. This inadvertently extends the diagnostic timeline.

Collectively, these factors result in many patients being undiagnosed or misdiagnosed for extended periods, during which ongoing inflammation may cause progressive and potentially irreversible joint damage.

The Role of Early Testing

Selecting the right diagnostic test at the right time is crucial to shortening the often lengthy and frustrating journey toward an accurate diagnosis. Fortunately, recent advances in testing have expanded the tools available to healthcare provider, but a timely diagnosis still hinges on informed, collaborative discussions between patients and providers.

A productive clinical visit begins with patients clearly sharing their symptom history. This includes when symptoms began, their frequency, severity, morning stiffness, flare-up patterns, and any noticeable changes over time.

This firsthand context from patients helps providers determine which tests are most appropriate, such as those for rheumatoid factor (RF); anti-cyclic citrullinated peptide (anti-CCP) antibodies; and Inflammatory markers like C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR).

Tests such as Thermo Fisher’s EliA™ autoimmunity assays provide clinicians with extra insight to support more precise diagnoses and can help tailor treatment recommendations. The assays monitor a wide range of autoimmune diseases by detecting and measuring antibodies in a patient's blood. These tests can aid in the diagnosis of conditions like RA, celiac disease, and thyroid disorders.

Providers should explain to patients what each test measures, what the results might indicate, and how those results will shape the treatment plan. Patients should be encouraged to ask questions about the purpose and limitations of testing, as well as next steps – whether that’s additional tests, follow-up appointments, or referrals to specialists like rheumatologists.

Because autoimmune diseases often present with vague or overlapping symptoms, test results alone may not be definitive. That’s why providers rely heavily on patient-reported symptom changes, triggers, and how those symptoms affect everyday life --- general insights that can help uncover patterns lab results might miss.

It’s important to note that even when test results rule out certain conditions, that information is still considered valuable. It narrows the diagnostic focus and helps maintain momentum toward finding answers. When there are cases of uncertainty or slow progress, seeking a second opinion is reasonable and sometimes essential.

Ultimately, effective diagnosis is a joint effort: patients contribute lived experience, while providers bring clinical expertise. This shared decision-making builds trust, accelerates diagnosis, and leads to earlier, more targeted treatment, which improves both short- and long-term outcomes.

Women Face Greater Diagnostic Delays

RA disproportionately affects women, who constitute nearly 80% of all cases. Despite this high prevalence, women are significantly more likely to be misdiagnosed or experience delays in receiving appropriate care. In fact, a study examining healthcare misdiagnoses  found that approximately two-thirds of those who reported being misdiagnosed were women, highlighting a systemic issue of diagnostic disparities.

The typical symptoms of fatigue, joint pain, and general discomfort are frequently dismissed in women or attributed to stress or hormonal changes, rather than recognized as signs of an underlying autoimmune condition. Hormonal fluctuations, particularly during childbearing years, can mask or mimic autoimmune symptoms, making timely diagnosis even more challenging.

These diagnostic delays can lead to serious consequences for women, including permanent joint damage, decreased mobility, and long-term physical impairment. Emotional distress caused by being dismissed or misunderstood exacerbates the overall disease burden and negatively impacts quality of life. Delays often result in the need for more intensive and costly treatments.

Recognizing and validating unexplained symptoms in women is crucial for a timely diagnosis and appropriate intervention, ultimately improving outcomes.

Advocating for Patients as Partners in Diagnosis

An accurate diagnosis doesn’t happen through testing alone. It requires patients to speak up, track patterns, push for clarity, and challenge delays.

Patients are not passive participants in their care. They are the key to faster, more accurate diagnoses. By documenting symptoms, asking hard questions, and refusing to accept vague answers, patients can help uncover critical insights that standard labs don’t reveal.

What changes outcomes is a patient who actively engages, and a provider who listens to them without bias or assumptions. Together, they form a partnership that prioritizes answers over assumptions and action over wait-and-see.

Clear communication, persistent advocacy, and a refusal to be dismissed – these are not optional. They are the foundation of faster diagnoses and better care.

The process to achieve faster autoimmune diagnosis requires patients to receive proactive primary care tests and to maintain open dialogue with their doctors.

The patient's personal understanding of their medical experience should receive equal recognition as well. The active involvement of patients, combined with advanced diagnostics, will enhances rheumatic disease treatment and produce superior long-term results.

Tara Bruner is a Physician Associate and Manager of Clinical Education for Thermo Fisher Scientific.

Rx Opioids Are Not a Cure… and Neither Is Anything Else

By Neen Monty

They deliver it like it’s some kind of mic drop.

“Opioids are not a cure,” they say.

But here’s the important thing: Almost nothing in medicine is a cure.

Insulin doesn’t cure diabetes. But it keeps people alive.

Methotrexate and Xeljanz don’t cure rheumatoid arthritis. They slow down disease progression though.

Intravenous immunoglobulin is not a cure for Chronic Inflammatory Demyelinating Polyneuropathy. But it slows down the demyelination of my nerves.

Prednisone is not a cure for autoimmune disease. But it reduces inflammation, which improves pain and quality of life.

Anti-inflammatories do not cure inflammatory arthritis, but they decrease pain, increase function and improve quality of life.

Metformin, thyroxine, even chemotherapy in many cases… none are cures.

They manage symptoms, reduce harm, and improve quality of life.

That’s medicine’s job.

Medicine is not purely about curing disease. In fact, it’s rarely about curing disease. That does not mean that all the wonderful things that medicine can do are worthless.

So why is pain relief held to a higher standard than every other kind of treatment?

Why are opioids dismissed simply because they don’t cure the underlying disease that causes the pain?

Pain relief is not a moral failing. It’s medicine doing what it’s meant to do: Alleviate suffering and restore function.

That’s what opioids do. Alleviate suffering, restore function and improve quality of life. Those are good things.

If you can move again, sleep again, think clearly again, participate in life again, isn’t that a good thing?

But no. Dismiss opioids because they’re not a cure.

Such a stupid point of view.

Now that we’ve shown that chronic pain patients hardly ever become addicted or overdose on their pain medication, people are really reaching for reasons to demonize opioids. Saying that opioids are not a cure is reaching pretty hard.

Opioids reduce pain temporarily. I am under no illusions. And I do wish there was a cure for my diseases. I really do. But there is no cure. There is only palliative treatment -- with opioids.

And so many people would like to take that pain relief away from me. People who have never experienced severe pain at 1am. So severe that sleep is impossible. So constant that it happens every night. And all day, every day.

Except for the few hours when I have pain medication to reduce that pain – while not curing it.

Opioids don’t cure pain any more than insulin cures diabetes. They treat a symptom. A devastating symptom – severe pain - that profoundly affects function and quality of life.

Reducing that pain, even temporarily, is not a failure.

That’s a treatment working.

It’s the best treatment we’ve got for severe pain, acute or chronic.

To say “opioids are not a cure” is to fundamentally misunderstand what they’re for.

You know, those glasses you wear won’t cure your shortsightedness. Let’s take your glasses away. They’re not a cure!

That wheelchair won’t cure paralysis. You don’t need a wheelchair.

We don’t apply this logic to any other condition or treatment. Only pain. Only opioids.

We don’t tell people with heart failure to throw away their meds because they don’t “fix” the heart.

We don’t tell people with asthma to stop their inhalers because they don’t “cure” the lungs.

We treat to relieve symptoms, to restore life and dignity, because that’s the ethical duty of medicine.

Relief of suffering is an outcome. Improved function is an outcome. But a cure is wishful thinking.

So the next time someone says, “Opioids are not a cure,” remember that neither is anything else we use to keep people alive, moving, and human.

And that’s okay. Because that’s the best we can do, in many situations.

Because the goal of medicine isn’t always to cure. It’s to care.

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.”

Cutting Off SNAP Benefits Will Hurt People With Chronic Pain

By Crystal Lindell

The only thing worse than chronic pain is chronic pain with hunger. 

But that’s exactly the situation we are about to plunge millions of Americans into if SNAP benefits don’t go out in November. 

The food stamp program — more formally called the Supplemental Nutrition Assistance Program (SNAP) — provides money for groceries to those with a low income. And it looks to be one of the many casualties of the current federal government shutdown. 

The U.S. Department of Agriculture confirmed this week that they will not use emergency funds to cover November disbursements. So unless the government reopens or the Trump administration changes its mind, about 42 million low-income people won’t have enough money to buy all the food they need. 

And make no mistake, cutting off SNAP benefits in November will hurt people with chronic pain. While most people might not connect food aid with chronic pain, there is a significant overlap.

According to the CDC, over half of disabled Americans (52.4%) have chronic pain, while the most recent USDA data show that nearly four in five (79%) SNAP households includes a child or adult with a disability. Those households receive 83% of SNAP benefits.

But the statistics don’t tell the full story. There are many people who are in too much pain to work full-time jobs that would pay enough to cover their household expenses — yet they are not disabled enough to qualify as fully “disabled” by government standards.

Those people often rely on government programs like SNAP to make ends meet. 

There are a lot of people who think that too many people get SNAP, and that cutting off benefits or adopting tougher work requirements will cause a needed reset. 

But my experience is that not enough people get SNAP. In fact, I would support expanding the program to help as many “disabled but not technically disabled” people as possible. 

The number one thing I hear people say when they complain about programs like SNAP is essentially: “It’s not fair. I need it and don’t get it. Therefore fewer people should get it.”

But in reality, the conclusion should be the opposite. If you need a government aid program and can’t get it, the solution should be to expand access to that program – not to cut the program off for others. 

The average SNAP recipient gets $177 per month in food aid. Would you be able to buy enough food to survive on less than $6 a day?

I also worry that if SNAP benefits end next month, they might not ever go out again. Once you upend a social program, it’s easy to continue on that path. 

I believe it’s a sign of our deep cultural rot that cutting off SNAP is even a possibility. It’s telling that an anonymous donor volunteered to give the government $130 million dollars to fund military pay during the shutdown, but no such donor has appeared to contribute to SNAP aid. 

Our priorities have skewed so far in the wrong direction, that we now spend billions on the military to protect citizens we can’t even feed. What is even the point of that?

My hope is that society will prove me wrong – and that the moral rot I fear is still fresh enough to be hacked off. Push back from voters and advocacy groups could pressure the government to find a way to go forward with the November SNAP disbursement. 

Only time will tell whether America still values feeding people as much as it claims to want to protect them. 

Government Shutdown Highlights Absurd Cost of Health Insurance

By Crystal Lindell

Health insurance has gotten so expensive that it almost makes sense to ask, “Is it worth the price?”

Insurance is sold to consumers through a “worst-case scenario” framework. Companies tell people they have to have health insurance or risk disaster.

“What if you suddenly need millions of dollars in ICU care? You need to have our health insurance to pay that bill!” is how they frame it.

Naturally, the insurance companies follow that up with, “If we are saving you millions of dollars in medical expenses, then tens of thousands of dollars for your policy is actually quite a bargain, right?”

“Tens of thousands of dollars” might seem like an exaggeration if you haven’t been paying close attention to health insurance prices lately, but it’s not.

According to data recently released by KFF, a health policy nonprofit, family premiums for employer-sponsored health insurance reached an average of $26,993 this year.

Their data shows that workers pay $6,850 of that out of their own paychecks. As such, that’s the price most people associate with their plans.

But in reality, employees are paying the full $26,993, because every penny that companies spend on your health insurance is a penny that could be in your paycheck instead. Hiding those costs behind “employer contributions” is just a neat trick insurance companies use to hide the real price you’re paying.

And if you’re buying insurance on the Affordable Care Act (ACA) marketplace, then the real cost of your plan is hidden in a different way: behind federal subsidies. Some of those subsidies will expire at the end of the year, and it’s forcing people to confront just how expensive insurance has gotten. 

The ACA subsidies are at the heart of why our federal government is currently shut down. Democrats want them to continue, and Republicans do not.

The potentially devastating effects of ending them for the 24 million people currently enrolled through the ACA are becoming apparent. Open enrollment for 2026 coverage begins Nov.1, and people have to make their decisions soon.

The Washington State Standard reports that individual insurance in that state bought through the ACA are set to rise an average of 21% next year. 

As of now, the subsidies save ACA enrollees an average of $1,330 per year, according to Washington Gov. Bob Ferguson’s office. For seniors, those savings jump to more than $1,900 annually.

Going Without Coverage

NBC News reports that some people are planning to forego health insurance, rather than pay higher prices. They shared the story of Arkansas residents Ginny Murray and her husband, Chaz. The couple plans to drop coverage and pay out of their own pocket if an unexpected illness strikes.

“Our plan is to keep putting the money we’re already paying towards health care in savings,” Ginny explained. “And really just hoping that we don’t have a stroke or we don’t have a heart attack.”

It’s a plan I myself adopted years ago after getting laid off and deciding to make a go of it as a freelancer who does odds and ends on the side to survive. When I tried to look into health insurance plans, I quickly realized that it was much cheaper to just pay cash out of pocket for my doctor appointments and prescriptions.

Especially since even if I pay for insurance, deductibles and co-pays mean I could still end up with thousands of dollars of medical debt. 

Yes, I live under the constant fear that I will be one of the people that health insurance companies warn about. That someday I will find myself in the ICU in need of millions of dollars of care that I can’t pay for.

But it’s a risk I have to take at this stage of my life because I just cannot afford to buy my own health insurance, even with the ACA subsidies. 

Last I checked, I did not qualify for Medicaid, although that too brings its own set of problems. Currently my primary care doctor is across the state line at the closest university hospital to my house. He’s well equipped to handle the chronic, complex health problems that I face But if I got onto Medicaid in my state, I may not be able to see him anymore.

Mine is just one story among millions who are trying to figure out how to pay for their health care under a private health insurance system where companies have every incentive to raise prices to eternal heights.

That’s why, in reality, we should be striving for more than just some ACA subsidies for health insurance. Medical expenses and health insurance costs should not constantly loom over people’s heads. 

We could be implementing universal Medicare at the very least. A program like Medicare for All would be life changing for me. I’m sick, but not sick enough for disability. And since I am only 42, I can’t get Medicare yet.

It doesn’t have to be that way. What if I could get the same health insurance my grandma has? Why do I have to wait until I’m 65 to do that? Why is 65 the arbitrary number?

Other developed countries have better alternatives, such as universal healthcare coverage, than the current U.S. system. We should have better access to health insurance too – or at least something more affordable.

Does Having Chronic Pain Mean I’ll Die Young?

By Crystal Lindell

This morning I got news that someone I knew had passed away.

I describe him as “someone I knew” because my connection to Rich is difficult to explain. He was my fiancé’s, late-mom’s, long-time boyfriend. Basically, my step-father-in-law. Ish.

After battling a bad cold, which may or may not have been COVID, he had an aneurysm and then spent a couple weeks in the ICU before passing away last night.

It’s the kind of news that’s both expected and painfully shocking.

He was too young. Just 58 years old. But his short life had been hard on him and his body. He had spent years doing manual labor and treating his pain with multiple types of medications. 

So, in retrospect, if you had asked me for a prediction, I would have told you that I never expected Rich to live to see old age.

But I didn’t really expect him to die at 58 either.

Since 2020, nine people I knew have died. Two long-time friends, my cousin, my dad, my aunt, my step-dad, my fiancé’s mom, my former boss, and now, Rich.

My fiancé Chris and I got engaged in December 2020 and he’s still my “fiancé” in large part because the onslaught of death seemed to freeze my brain in such a way that made it impossible to plan a wedding.

And now, a quarter of our would-be guest list is dead.

Many of the dead were very young. My age. All of them were too young. None of them made it to their 70s.

I can’t help but consider my own mortality. And it’s made me realize something I had been trying to avoid: People who develop severe chronic pain at 29, like I did, often don’t live long enough to be considered old. And when they do, they are the exception to the rule.

Even if the pain itself isn’t terminal, everything else will surely have an easier time taking me out. It’s not like I’m in peak disease-fighting shape. 

Not to mention all the damage that taking pills for breakfast every morning must be doing to my organs.  

The thing about the kind of nebulous chronic pain that I have is that I never got to have one of those movie-scene conversations in a doctor’s office where they clearly explain how dire my situation is. I suspect those conversations are reserved for illnesses that show up on blood work and CT Scans.

My pain has always been something only I could feel, and nobody else could see or test.

As such, my doctors have always been some mix of hopeful and dismissive about my ailment. They’d tell me that maybe I’d magically get better one day, while also telling me that they couldn’t find anything wrong with my ribs. 

And none of them have ever spoken directly to me about the many ways that chronic pain and my eventual diagnosis with Ehler-Danlos Syndrome might shorten my life expectancy. Technically, neither one is supposed to on its own. 

That doesn’t mean they can’t though. And I suspect the doctors know this, given the fact that they are willing to prescribe me the kind of opioid regime most people don’t ever go off of.

These days, I’m known among my loved ones as having “a lot of health issues,” while among my acquaintances I’m known as “the one who writes about her chronic pain online.”

So someday, when they all get the news of my death, I’m sure none of them will be too shocked. People aren’t surprised when someone like me, with a rare disease that causes chronic pain, dies young. They’re surprised when we don’t.

There was a time, in my early days with chronic pain, when I prayed for death. A time when I could not imagine spending years of my life with stabbing rib pain.

But over the years I came to accept it, and learned to manage it as much as medication would allow.

I’m 42 now, and a few years ago I started letting my gray roots grow out. 

After being surrounded by so much death, I saw them now as my silver trophy. My prize for making it to my 40s — a privilege that some of my late friends never got to experience.

How lucky am I to have lived long enough to have gray hair?

How lucky am I to be old enough for wrinkles? To have reached the age where I’m now slowly losing my ability to read small print? To be alive to complain about how hard it is to stand up, now that my body is aging.

How fortunate am I? How fantastic for me.

I can only hope that I make it much, much longer. Maybe another 42 years, if I’m truly lucky. But if not, I have faced my own mortality. I can see clearly just how fragile it is. And I’m okay with that.

I will spend my days baking, caring for loved ones, and writing. I will focus on all the things I would be focused on if I had ever gotten to have one of those somber doctor office conversations about my health. All the things that everyone realizes truly matter in life — right when they are about to run out of life themselves.

So even if I’m not OK, I will be OK.