How Intractable Pain Causes Brain Tissue Loss

By Dr. Forest Tennant, PNN Columnist

The brain not only controls pain but the endocrine, cardiovascular, metabolic, respiratory and gastrointestinal systems. Any or all of these biologic systems may malfunction if there is brain tissue loss.

Beginning in 2004, brain scan studies began to document that brain tissue loss can be caused by intractable pain. Today, almost 20 years later, this important fact appears to be either unknown or a mystery to both the public and medical professionals.

Basic science researchers have unraveled the complex process of how and why this pathological phenomenon may occur. A good understanding of how this pathology develops is critical to properly care for and treat persons who develop intractable pain whether due to a disease or an injury.

What Causes Tissue Loss?

Tissue loss anywhere in the body is caused by inflammation, autoimmunity, or loss of blood supply due to trauma or disease. The brain scan studies done since 2004 that documented brain tissue loss were not done in persons who had a stroke or head trauma, but in pain patients experiencing inflammation and autoimmunity (i.e., collagen deterioration). It turns out that both biologic mechanisms may operate to cause brain tissue loss in intractable pain patients.

In the pursuit of understanding brain tissue loss and its accompanying malfunctions, it has been discovered that the brain and spinal cord (central nervous system or CNS) contain cells called microglia. They are closely akin to the immune protective cells in the blood stream which are called a “lymphocytes.”

The microglia in the CNS lay dormant until a harmful infection, toxin or bioelectric magnetic signal enters its domain, at which time it activates to capture and encapsulate the danger or produce inflammation to destroy the offender.

If the microglia are overwhelmed by some danger, such as a painful disease that isn’t cured, it produces excess inflammation that destroys some brain tissue which can be seen on special brain scans. Some viruses such as Epstein Barr may hibernate in microglia cells and create an autoimmune response, which magnifies inflammation and brain tissue loss.

Intractable pain diseases such as adhesive arachnoiditis (AA), reflex sympathetic dystrophy (CRPS/RSD), and genetic connective tissue diseases such as Ehlers-Danlos syndrome may incessantly produce toxic tissue particles and/or bioelectromagnetic signals that perpetuate microglial inflammation, tissue loss and CNS malfunctions.

This is the reason why proper pain management must have two targets: the pain generator and CNS inflammation.

How To Know You Have Lost Brain Tissue

If your pain is constant and never totally goes away, it means you have lost some brain tissue and neurotransmitters that normally shut off pain. If you have episodes of sweating, heat or anxiety, you probably have inflammation that is flaring. Naturally, if you feel you have lost some reading, calculating or memory capacity, it possibly means you have lost some brain tissue. MRI’s may also show some fibrous scars.

Fortunately, studies show that if a painful disease or injury is cured or reduced, brain tissue can regenerate. While we can’t guarantee that brain tissue will be restored, we offer here our simple, immediate and first step recommendations using non-prescription measures.

First, do you know the name and characteristics of the disease or injury that is causing your pain? Are you engaging in specific treatments to reduce or even cure your disease, or are you simply taking symptomatic pain relief medications? 

Start at least two herbal-botanical agents that have some clinical indications that they reduce inflammation in the brain and spinal cord: serrapeptase-palmitoylethanolamide (PEA) and astragalus-curcumin-luteolin-nanokinase. You can take different agents on different days. 

Increase the amount of protein (meat, fish, poultry, eggs) in your diet. Consider a collagen supplement. Limit starches and sugars. 

Start taking these vitamins and minerals:

• Vitamin C - 2,000mg in the AM & PM

• Vitamin B-12, Vitamin D

• Minerals: Magnesium and selenium

We recommend vitamins daily and minerals 3 to 5 days a week. 

The above will help you stop additional tissue loss and hopefully regenerate brain tissue.  

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

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

A Pained Life: The Blame Game

By Carol Levy, PNN Columnist

Do you ever second guess yourself or play the blame game?  I did it again when I found myself doing too much.

While reading, my eye pain from trigeminal neuralgia started to grow and I thought, “Oh heck, I can do one more page.” And with each additional page, I repeated what has become a mantra: “It's okay. I can do it.”  

But of course, I can't. Not without paying a price. 

I finished most of what I wanted to do, my eye pain constantly telling and then yelling at me, “Stop already!”  

By the time I gave in and stopped, the level of pain was exquisite. I had no choice but to go to straight to bed, and try not to move my eyes for 15 minutes, if I was lucky, or an hour or more if I was not 

I do the same when going outside. I know a breeze, or even worse the wind, will again trigger the pain from trigeminal neuralgia. Any touch to the affected side of my face does. But I so much want to go outside.  

“Oh, the wind doesn't look that bad,” I’ll say to myself as I watch the tree in my backyard swaying from the strength of the wind against it. I go outside, the pain is triggered and I scurry back inside as fast as I can, then wait the 15 minutes to an hour before the pain calms down.   

The whole time I lie there and self-flagellate: “I knew to stop, but heaven forbid I should do what I know is right. I knew better. It serves me right.” And so on. 

Most people do this kind of thing. “I knew I shouldn't have eaten that last slice of cake, this stomach ache serves me right.” or “I knew I shouldn't have made that right turn back there and now I'm lost.”  

It's normal, for everyone but us. Because our lives stopped being “normal” the moment the pain took over. For me, “normal” meant reading for as long as I wanted, even for hours at a time; watching a movie and enjoying the brightness and movements on the screen; walking outside even when the wind is strong; or enjoying the feel of snowflakes falling on my face.  

My “normal” for the last few decades has been the exact opposite. 

We can't blame ourselves when normal doesn't work for us anymore. Our “new normal” is stopping before the pain gets too bad, being honest and saying, “I'm sorry. I can't do that activity or go with you today.” 

To me, my new normal is an awful thing, but the longer I try to deny it, to hold on to my old normal, the harder it is to accept. And it seems there is no time limit for how long you can hold onto the false hope that the old normal will return.  

The irony is that the word normal means “standard,” yet everyone's normal is defined by their own peculiar standards and needs. So, at the end of the day, there is no true normal for anyone but the one measured by their own internal yardstick.

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.

Waiting and Wanting to Die in Canada

By Ann Marie Gaudon, PNN Columnist

RIP Margaret Bristow October 23, 1959 – August 10, 2022

No, that’s not a typo. My friend Maggie will be dying in a few days, on August 10 to be exact.

Confused? I am trying to make sense of this, too.

One night a few months ago, I was hurting. Oh, my goodness was I hurting! I was lying in bed and decided to do a quick body scan.

I began with my head. I had a throbbing headache, which I suspect was a result of fairly severe TMJ. It felt like my jaw was locked solid, which is terrifically painful, and my tongue was burning as well.

I also was suffering with tinnitus that night, which is typically accompanied by severe ear pain. I also felt gastroesophageal reflux burning a fiery hole in my gut.

Next up was a severe back injury from 2017, which was irritated and oh boy did that ever hurt! Down I went to my bladder, which was burning from an interstitial cystitis flare. Pudendal neuralgia had nerve pain radiating from my sacrum down both legs and into both hips. Osteoarthritis had my hips, knees, legs and ankles throbbing.

Finally, both feet felt like I had knives stabbing into them over and over, as I now have plantar fasciitis to add to my list of pain conditions. What a state I was in. Neuropathic pain, visceral pain, and musculoskeletal pain -- all in a rage.

Nine different pains in total that night, which is not at all typical for me. I had nowhere to put this earthly body for more comfort. Sitting or lying on my back increased the pudendal neuralgia; lying on my side increased my ear and hip pain; lying on my stomach was painful for my neck; and standing increased the plantar fasciitis.

I had nowhere to go, so I lay there quite still. In case you are wondering, yes, I have medications and I took them all. I also took everything OTC that I had in the house. It didn’t seem to make any difference; the pain was surging and the medications were no match for it.

I thought to myself that if this were to become permanent, I would surely not survive it. My problem-solving brain told me the only way out would be the release of death. If nothing could tame all of these pains, what choice would I have? I couldn’t work like this and I couldn’t engage in relationships like this.  I could barely string together two sentences in my head.

I could not function in any capacity, so I lay there quite still, trying my best to be with the pain, but not overtaken by it. In that one horrible night, I understood why my sweet friend had chosen to die on August 10, 2022.

‘I Would Rather Have My Medication Back’

Maggie Bristow has been in chronic pain for over 25 years from fibromyalgia, degenerative disc disease, spinal stenosis and arthritis. Her pain became so severe that she was given opiate medication, which she took for many years. By 2016, the Ottawa woman felt the medication was not working very well, because her pain was increasing.

Already feeling pressured to reduce his prescribing, her pain physician took her off opiates and tried many other types of treatment, but nothing worked. He told her there was nothing else left to try.

To this day I do not fully understand this part of Maggie’s story. Was she properly titrated on opiate medications? Were they combined with something else? What about novel approaches like opiates placed in the spinal fluid? I will never know. I do know that Maggie felt she was out of options.

“My body constantly feels like a blow torch has been taken to it. I’ve not been able to sleep in a horizontal position for 20 years and I am housebound due to the intense pain,” Maggie told me.

“Simple tasks like opening the mail, preparing food and maintaining good hygiene are agonizing, monumental tasks. I would rather have my medication back or be allowed to die peacefully.”

With her pain increasing, Maggie just wanted it to stop. That year she applied for assisted death under Canada’s Medical Assistance in Dying law (MAID), and was flatly denied because she did not meet the criterion that a natural death be “reasonably foreseeable."

MAGGIE AND HER LATE PARTNER, BRIAN

Maggie persevered and once again in 2019 applied for MAID. For the second time, she received a phone call telling her that her request had been denied. She felt very deflated, upset and confused.

Quality of life continued to worsen for Maggie and she waited patiently for new legislation to pass last year amending the MAID law, which removed the criterion that “death was foreseeable.”

When she applied for a third time, the MAID physician requested a new MRI, a second opinion from another neurologist, and someone to give her opiate pain medication. Maggie was dumbfounded at this third request, because she was searching for five years for opiates to no avail. She chose to ignore that, and responded to the other two requests which showed results that her spine was “totally inoperable.”

Weeks and months dragged on for Maggie. Finally, a call came from her general practitioner who told her that the MAID physician advised that she tried to contact Maggie with no success. Maggie said that was nonsense because she is housebound and never heard from her. The truth was that the MAID physician was not comfortable signing off on her case.

Part of the policy for MAID is that if a doctor is unwilling to help you, they must refer you to another doctor who will provide service for you. This however did not happen. Maggie was left hanging and extremely put out for all the time wasted when she could have been researching other avenues. She was now desperate.

A phone call took place to provincial MAID, with Maggie telling them that the Ottawa MAID declined her request. What were her options? They told her they would just refer her back to Ottawa. Really? Maggie was now quite angry and she called her GP, who reached someone else in the organization and found a MAID physician in Toronto who would help her to die.

This is where I go off the rails. A doctor will not help you get opiate medication, but will help you die? This was not the Canada that I was born into.

The MAID physician in Toronto reached Maggie via video conference and after her assessment said she would sign off immediately on her request. Maggie felt good about this but also knew that it takes two doctors to sign off for your peaceful death to happen.

Time dragged on again. The GP called her contact to ask what was happening and soon another video conference with a second MAID physician took place. This physician did not give Maggie any indication of what the decision was. Weeks later, Maggie received a call from the first doctor, who told her that her application was approved.

They would indeed help her to die as per her wishes, on August 10, 2022 at approximately 2:00 pm. They will have a long drive to get there, but Maggie’s sister will be with her. Afterwards, her organs will be harvested for donation and her body will be shipped back to Ottawa for cremation.   

Maggie blames Health Canada for the many problems she and other Canadian patients in severe pain have getting opiate medication.

“People like me, and there are many of us, continue to suffer. Suicide is our only option. This is a level of cruelty that is very difficult to fathom and really has to stop,” she said.

The world will be losing a gem on August 10. Maggie is a warrior woman for all that she has endured. She is a survivor through and through. I have seen grace, generosity of spirit, love, and even a sense of humor through all of this.

Is Maggie beyond treatment without a doubt? I will wonder about that for the rest of my life as I remember my sweet friend and all that she embodied.

Maggie’s partner Brian, the love of her life, passed in 2008. She will be survived by two children and five grandchildren.

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

If you are in crisis and live in Canada, help is available by calling the Canada Suicide Prevention Service at 833-456-4566. If you live in the US, help is available by calling the 988 Suicide & Crisis Lifeline (formerly know as the National Suicide Prevention Lifeline) at 988 or 1-800-273-8255 (TALK). You can also call 911 for immediate help.

Be Careful What You Wish For: Cancer Is Not a Way Out From Pain

By Cynthia Toussaint, PNN Columnist

When my oncologist recently spewed the worst word I’ve ever heard -- “recurrence” -- everything in my mind sped up and stopped at the same time. I made a brutal fight for my life in 2020 against Triple Negative Breast Cancer, but came up short.   

Now launching my second battle, a misguided myth disheartens me. Many of us with pain say things like, “I wish I’d been lucky and gotten cancer instead, because with cancer you either die or get better.”

WRONG! I now see this thinking as a cop out, a “poor me” pity party and gross disrespect for those who fight for their lives.

Let me break the suspense. If you ever get the Big C, it will not deliver you from your suffering. You won’t be jumping up and down with glee because your pain problems are over. Like the rest of us, you’ll take on the fight of your life and your pain will quickly take a back seat.  

Here’s more upending news about the “deliverance” mythology: With all of cancer’s apparent “perks” (abundant research, unending sympathy, bountiful support, etc.), it’s anything but the ticker-tape parade of arm-locked togetherness. In reality, an aggressive cancer diagnosis is a new brand of isolating, hellish suffering with death as a probable outcome.

Then there’s this: Cancer fetches a morbid world of trespasses. Many project their fears by pummeling us with religious fervor. It’s unsettling to receive pious magazines and missives about the new body I’ll soon have, the one without pain. Friends and people I don’t know remind me of how lucky I am to be nearing death’s door, because the other side will be paradise.

A head’s up! With cancer, even more than being in a wheelchair, one becomes public domain, open to an onslaught of good intentions delivered with a heaping side of judgement.

And there are the bizarre jealousies. I can’t believe I’m writing this. Have you ever noticed that many in the pain world compete? It’s all too often about who’s the sickest, who’s agonizing most. When you go to the front of the line with cancer, people can get cruel because you’re hailed as the winner of the “Can’t Get Worse Than This” award. Well, three cheers for me!

Soul-Sapping Support

Most heartbreaking, just when I thought my support system couldn’t atrophy further, people have scurried. A number of my close friends who stayed through my decades of pain have stunningly distanced themselves or pulled away altogether. Friends that I believed were strong enough to withstand anything, my rocks, crumbled.

And, ah yes, the platitudes. If I hear “You got this” one more time, I may lose whatever I still got. “Good luck” while walking away has become code for “I’m not strong enough for this scene, but I hope you can keep yourself above ground.”

Then there’s the classic, “If you just think positively, everything will be fine.” Far from it. Faking positivity is the most energy-draining, soul-sapping activity known to humankind.   

Have you ever heard the term, “scanxiety”? If not, that’s because you haven’t had cancer with its phobic-driving medical scans that endlessly loom. It may surprise you (it did me!) to learn that cancer falls into the chronic illness category, a potentially terminal co-morbidity. Even if you hit the jackpot of remission, you’re doomed to a life of fearful obsession over the possibility of recurrence. With cancer, I guarantee you’ll never, ever again be gifted a moment of real peace.        

For these reasons, and the many I don’t have room to share, I implore you to stop thinking that cancer is the way out of pain. To the contrary, if you’re ever diagnosed with a life-threatening malignancy, you’ll be praying for the good ol’ days. Just as I do.

Also, it’s an insult. There are many of us, fighting for our lives and weathering horrendous therapies just to have one more shot -- therapies that often leave us with increased life-long pain. So, please check yourself the next time you have the impulse to blithely state how people with cancer are the lucky ones.

I’m ashamed of the things I used to think and say. I was wrong and out of line. I apologize to all, past, present and future, who had, have or will have courage I didn’t honor.

Sorry for the finger-wagging. I know we’re struggling to cope with the day-to-day torture of our pain, along with the dread that our suffering will likely go on till we’re no longer. But desiring worse isn’t the answer. I guess I’ve seen too much now to put up with ignorance and lack of self-worth. Cancer does that to you, especially the second time around.

This boils down to the power of thoughts and words. I believe they have the sway to make us sick or well. Choose them wisely, and be careful what you wish for.

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 19 co-morbidities for 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.”

I’m Living Proof That Effective Pain Management Can Heal

By Heather Grace

My journey into what would become debilitating pain began at age 19, when my neck was injured in a head-on collision caused by a drunk driver. Being a backseat passenger in an older car meant there were no headrests.

I healed as best I could after the accident with chiropractic care and exercise. I was young and told myself I’d be fine, but sensed I wasn’t quite the same as before.

Nearly a decade of work in the IT field worsened the severity of my injury, due to faulty ergonomics. Between the severe pain and the horrors of the workers compensation system, it began to feel like I was in free fall. At my first visit with a prominent pain management specialist, I was told, “Normal is out the window for you.”

It was the worst thing I’d ever heard, so I began sobbing. What he said wasn’t actually cruel, it was honest. He could see that my body was broken by work comp care that included two botched neurosurgeries and one spinal discectomy-fusion surgery that came far too late to be a good thing. 

I was left with intractable pain and nerve damage, which would be diagnosed as Complex Regional Pain Syndrome (CRPS) Type II. The CRPS is not regional at all, but spread to the whole body, thanks to the impact on my spinal column and brain.

I would later also learn that I was born with Ehlers-Danlos Syndrome, a progressive connective tissue disease.

HEATHER GRACE

Intractable Pain Syndrome (IPS) isn’t well understood in mainstream medicine because it’s not very common. In fact, even after working in Continuing Medical Education for 10 years, I’d never heard of IPS until I was diagnosed with it. I didn’t know that it was possible to be in severe unceasing pain.

People with IPS experience major health problems throughout their lives because of the physical and psychological toll that pain takes on the brain and body. Treatment for this complex and disabling condition must be taken seriously and done correctly.

A New Future

After all this was explained to me by my doctor, I realized that to move forward with my life, I had to stop pinning my hopes on returning someday to “normal.” I had to grieve the loss of my former life. Once I did, a door was opened to a meaningful future for me.

Thanks to amazing treatment with a physician who also helped me focus on the future, I’m living again in a way I didn’t think was possible when I first sat down with my doctor in 2006. He found the right treatments for me, which included opioid pain medication.  

I’ve reduced my medication dose slowly over the years. I’m now taking less than one sixth the pain medication I started with. That’s because I’ve experienced neurogenesis, a form of healing in my nervous system.

It is possible for people like me to heal, albeit very slowly over time when they get the care that they need. Despite the severity of my conditions, I’m doing well. Contrary to popular opinion, patients who get the proper dose of pain meds don’t always require more and more medication. While some patients’ dosages stay the same, some of us are able to lower our doses when our health improves.  

I’ve come so far. In 2004, when I left the job I loved awaiting two major surgeries, I thought I’d never work again. But I was able to obtain a full-time job (with benefits!) in 2020. It required a major effort, but I got here because I had a good foundation of long-term effective pain management, which lessened the impact of pain on my overall wellness.

Opioid medication does not define my care, nor my life. Pain meds are merely a tool I’ve used to get well. Every patient should have access to individualized pain care with the treatment options that best work for them. It’s crucial for patients if they’re ever going to see their health improve.

I won’t lie, it’s been a struggle and I have had my share of setbacks too. Yet I know without question that pain medication was required in my case. It made a serious difference in my overall health and paved the way to my future too.  

Effective pain management for someone with IPS is as vital as care for any other serious illness. You’d never tell a diabetic that an arbitrary maximum dose of insulin was all they were allowed to have. Why are pain patients any different? None of us asked for the pain, nor do we like having to take a prescription drug that’s so socially maligned. These judgments exist nowhere outside of pain management. Why are people in pain treated so differently and with such suspicion?  

The fact is, when the CDC’s opioid prescribing guideline was released in 2016, the consequences were far-reaching and dire. Countless patients have needlessly suffered and died because they lost access to opioids or were tapered, based on the guideline’s recommendations. Many of those deaths have been due to the pain finally overtaking the body. Other patients have chosen to end their pain via suicide. Imagine being so ill that you were forced to make such a choice!  

Without access to effective individualized treatment by physicians whose options aren’t stifled by a system that doesn’t understand pain, many more people with serious diagnoses will develop intractable pain.

Those outside the treatment setting have no business undermining patients’ pain care protocols. They simply don’t have the knowledge to be involved on that level. That goes for the CDC, DEA, state medical boards and insurance companies — along with anyone else who gets in the way of pain patients having effective care. 

Sadly, I know it’s the workers compensation system that led to the severity of my illness. I got an extensive education on how an overburdened system not designed for people with serious healthcare needs can result in disability.  

Please don’t jeopardize the future of an entire branch of medicine any further. There are human lives on the line. Everyone knows someone living with chronic pain. Make the changes needed to continue treating people like me — people whose lives don’t have to end because they have a serious injury or illness. It’s crucial to roll back the damage done by the CDC guideline before we all lose access to pain management forever.

Heather Grace is a patient, advocate and member of For Grace’s Board of Governors. She’s worked for health-focused nonprofits most of her career & developed Continuing Medical Education (CME) for nearly a decade. Heather lives with Complex Regional Pain Syndrome II and the genetic condition Ehlers-Danlos Syndrome. Heather has a website on pain issues called Intractable Pain Journal.

A Pained Life: Tincture of Time

 By Carol Levy, PNN Columnist

“Tincture of time” is a medical maxim. Wait it out. Let's see what happens. Give it time. 

But when you have pain from trigeminal neuralgia, like I do, even a few seconds is too long to wait. Yet it takes time for pills to work. 

I don’t take my codeine prescription before the pain gets bad. I wait until the pain starts, then I take a pill. I hate taking codeine. It makes me feel awful, dry-mouthed and cloudy-headed. It takes about 15 to 20 minutes before it kicks in.  

Unless I let the pain get out of hand by continuing to do things that make it worse, I find my pain usually starts to calm down on its own, in about 20 minutes. The same amount of time it takes for the codeine to work. 

Maybe it's worth the wait. So many of us in pain are complaining, rightfully, that their doctors have reduced their meds or even stopped them completely. It's an awful situation, but one that may have some answers in the self-help column. 

When my pain starts, I no longer immediately head for the codeine bottle. I stop what I'm doing (which may not be possible for many of us), and wait the 20 minutes or so it would have taken for the codeine to help. And, thanks to tincture of time, I am better. Not always; but more often than not.

Tincture of time is one way for us to deal with the pain -- and simultaneously allows us to save pills for when the pain really does gets get out of hand.

It also has a downside. Many of us have lived with our pain for years or, like me, for decades. You get used to it, or as used to pain as one can get. I no longer talk about the pain unless I'm specifically asked about it. Then I usually just “pooh-pooh” it. I am so accustomed to pain that it is now a part of me. And I would rather not talk about it.

I do this with doctors. Any doctor that I see must know what my situation is, just by reading the names of the pain I have. They should know, so I don't make a big deal out of it. 

In that case, a tincture of time is harmful. I dismiss the pain even when I'm asking for help. They respond by not taking me seriously or thinking, “Well, her pain can't be that bad.”

Time can be an enemy or a friend. It may be the medicine we need or one that we need to ignore.

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.

Why ‘Song of Our Scars’ Is Out of Tune

By Janet Kozachek

Understanding a complex problem with a long history such as pain in all its permutations and treatments requires detailed and detached observation. In this respect, “The Song of Our Scars: The Untold Story of Pain” by Haider Warraich, MD, falls short.

In his book, Warraich explores the cultural and medical history of pain, including his own after suffering a severe back injury. Although informative on the science of pain, the book contains some misleading information about ancient and modern history that seem designed to advance what appears to be a strident anti-opioid agenda.

Ironically, what benefitted me most in reading this book were the discoveries made in the pursuit of a fuller story, which revealed greater truths and richer vistas through fact checking. But this was a sad lesson on how popular literature reshapes history in order to serve a narrative. The instances of this are too numerous for this review, so a few examples will have to suffice.

In an earlier op-ed piece written in 2019 for The New York Times, Warraich portrays pain as an emotional sensation, a theme which would become his mainstay in subsequent publications, including Song of Our Scars:

"The ancient Greeks considered pain a passion — an emotion rather than a sensation like touch or smell. During the Dark Ages in Europe, pain was seen as a punishment for sins, a spiritual and emotional experience alleviated through prayers rather than prescriptions.”

The ancient Greeks had a rich vocabulary for the physical sensations of pain, as well as an understanding of emotional pain. A quick search through the ancient Greek lexicon reveals four words to describe pain in both mind and body:  penomai, algos, odyni, and pathos. Algos is the root word for algia, as in the physical pain caused by neuralgia. Pathos describes emotional pain.

The Greeks not only defined the types of pain, they had myriad treatments for it, including an early version of TENS units, in which they had people dip their feet into a bath of electric eels!

Many gods of classical antiquity are associated with the opium poppy plant. According to Warraich, the Greek god of death Thanatos is “depicted holding a wreath of poppies or wearing poppies on his head.” But in my perusal of classical Greek sculpture and vase painting, there are no images of Thanatos bearing or wearing poppies. He is usually depicted holding a butterfly, sword or torch while guiding the dead into the hereafter.

Warriach also claims that poppies are seen in the story of Demeter, “who overdoses on the milk of the poppy to induce anesthesia and forget the torment of having had her daughter (Persephone) raped and abducted by Hades.” In Greek mythology, Persephone is abducted and taken to the underworld, but I can find no references to Demeter self-medicating, let alone overdosing on anything.

Warriach’s understanding of Greek mythology appears to have been derived from a cartoon by a contemporary artist and Wiki-Fandom, an online community for fantasy lovers.

It was enlightening to become reacquainted with Greek myths. I had a similar experience while researching certain claims made in Song of Our Scars about Great Britain’s Opium War with China. Warriach wrote that “the sale of opium remained banned on British shores – unless the sale was to someone of Chinese or Indian origin.”

“The Opium Wars – The Addiction of One Empire and The Corruption of Another,” by W. Travis Hanes and Frank Sanello, says otherwise:

“For not all opium from India ended up in China: Three hundred chests a year were diverted to England with the same disastrous effects as in the middle kingdom... opium was the opiate of the underclass in England’s grim and grimy industrial cities, where workers on pay day lined up outside the chemist’s for the inexpensive palliative to their industrial hell at the reasonable price of one and two pennies per packet.”

Another interesting instance of fact tweaking occurs with regard to Dr. Hamilton Wright, an anti-opioid crusader who served as a U.S. special envoy to China in the early 1900’s. Warriach wrote this about Wright:

“His travels exposed him to the dangers of opium abuse around the world, imbuing in him a special zeal against the poppy... He told The New York Times that year that thousands of people were “slaves to the opium habit, about five-sixths of whom are white.”

But the original context in the 1908 Times article is missing, because Wright mentions specifically that six thousand opium addicts were in New York City.

This gem from the original article is also omitted:

“While Dr. Wright believes that nearly all the Chinese in the great cities are addicted more or less to the habit of smoking opium, not more than one third of them, take it to a harmful extent.”

Cherry picked facts like that in Song of Our Scars often coincide with amorphously defined data like this:

“Multiple studies show that women are more likely to be prescribed opioids, in higher doses, and for longer periods than men.” 

Research cited in Maya Dusenberry’s book, Doing Harm, show that women are actually less likely to be prescribed opioids than men. One explanation for the disparity may be that the studies cited by Warraich appear to rely on raw numbers rather than ratios and percentages.

Warraich does admit to this, which begs the question what his purpose is in bringing up gender differences. Was it an attempt to ascribe opioid addiction largely to women?  It would be wiser to consult the National Institute of Drug Abuse, which reports that addiction falls more heavily on men.

Misleading information like this leads to misunderstanding, which may in turn provoke inappropriate actions -- especially if a narrative is shaped by an agenda. Hopefully, this review may serve as a cautionary tale to read popular literature such as Song of Our Scars with a healthy dose of skepticism.

Janet Kozachek lives with a cluster of painful disorders.

She is an internationally trained and exhibited artist, and holds a Master of Fine Arts Degree in painting and drawing from Parsons School of Design in New York and a Certificate of graduate study from the Central Academy of Fine Art in Beijing.

Janet is the author of The Book of Marvelous Cats, My Women, My Monsters, and A Rendering of Soliloquies: Figures Painted in Spots of Time.

Another Look at the Opioid Risk Tool

By Dr. Lynn Webster

I'm a proud grandfather to two young granddaughters. They are my world. Watching the U.S. Supreme Court rescind women's right to decide what to do with their own bodies made me feel angry that my granddaughters will be subjected to dehumanizing discrimination.

This tyranny against women extends beyond the Supreme Court’s decision over Roe vs. Wade.

I have read multiple accounts of women who are being denied access to opioid medication because they acknowledge a history of toxic adverse experiences as children or adolescents. Many such instances have occurred after women completed the Opioid Risk Tool, a questionnaire that asks a person if they have a history of preadolescent sexual abuse.

The refusal to prescribe opioids to women with a history of preadolescent sexual abuse is a defensive measure by providers to avoid being accused of causing an Opioid Use Disorder (OUD).

Why I Developed the Opioid Risk Tool

The Opioid Risk Tool (ORT) that I developed more than 20 years ago was designed to assess the risk of someone who was prescribed opioids for chronic pain treatment showing aberrant drug-related behavior.

The ORT was a simple questionnaire that could be administered and scored in less than a minute. It was developed at a time when we had no way to assess the risk of developing opioid abuse in patients who were prescribed an opioid for non-cancer pain. We needed a tool to help evaluate whether the risk of potential harm from opioids outweighed the potential good for each individual.

I never intended for doctors to use the ORT to determine who should or shouldn’t be prescribed an opioid. My goal was to help doctors identify patients who might require more careful observation during treatment, not to deny the person access to opioids.

Since abuse and addiction are diagnosed by observing atypical behaviors, knowing which patients are at greatest risk for displaying those behaviors is useful in establishing appropriate levels of monitoring for abuse. This was intended to protect the patient from potential harm. It was never supposed to be used as an excuse to mistreat patients.

The original version of the ORT contained 10 questions, including whether a patient had a history of preadolescent sexual abuse. Women who answered "yes" scored 3 points; while men who responded affirmatively scored 0 points. The higher you scored, the more closely your doctor would need to monitor your opioid use during your treatment.

The ORT questionnaire was based on the best evidence at the time. Multiple studies have since confirmed the validity of the questions used in the questionnaire. However, many people have criticized the question that asks about a history of preadolescent sexual abuse because of a perceived gender inequity. In addition, some doctors have generalized the ORT's question about preadolescent trauma so that it applies to a history of female sexual abuse at all ages.

I have written that the ORT has been weaponized by doctors who are looking for a reason to deny patients -- particularly, women -- adequate pain medication.

There are doctors who use their power to determine whether to treat a woman's chronic pain with an opioid or allow her to suffer needlessly based on the ORT's answers. This is no less malevolent than a forced taper resulting in suicides or the use of the CDC opioid prescribing guideline to criminally charge providers for not following the CDC's recommendation. In all of these situations, an injustice is being committed against innocent people.

It is also not much different from the Supreme Court’s decision to ignore a woman’s right to access full reproductive rights. Both are attacks on women.

Fortunately, Martin Cheatle, PhD, and his team published a revised Opioid Risk Tool in the July 2019 edition of the Journal of Pain. In his research, Dr. Cheatle found that a revised ORT using 9 questions instead of 10 was as accurate as, if not better than, the original ORT in weighing the risk of patients for OUD. The revised ORT eliminates the use of a woman's sexual abuse history as a risk factor.

At a time when females have had their human rights taken away by a Supreme Court vote, it is especially appropriate to reconsider how we assess risks for potential opioid abuse for women.

It distresses me to know that, while the original ORT served to help assess the risk opioids posed for individuals, it has also caused harm. Since the question about a woman's sexual abuse history does not provide any additional benefit, there is no reason to retain it. The revised ORT should be used instead of the original ORT.

Lynn R. Webster, MD, is Senior Fellow at the Center for U.S. Policy (CUSP) and Chief Medical Officer of PainScript. He also consults with the pharamaceutical industry.

Lynn is the author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. You can find him on Twitter: @LynnRWebsterMD.

Why Some Drugs Work Better on Different Types of Pain

By Dr. Rebecca Seal and Dr. Benedict Alder

Without the ability to feel pain, life is more dangerous. To avoid injury, pain tells us to use a hammer more gently, wait for the soup to cool or put on gloves in a snowball fight. Those with rare inherited disorders that leave them without the ability to feel pain are unable to protect themselves from environmental threats, leading to broken bones, damaged skin, infections and ultimately a shorter life span.

In these contexts, pain is much more than a sensation: It is a protective call to action. But pain that is too intense or long-lasting can be debilitating. So how does modern medicine soften the call?

As a neurobiologist and an anesthesiologist who study pain, this is a question we and other researchers have tried to answer. Science’s understanding of how the body senses tissue damage and perceives it as pain has progressed tremendously over the past several years. It has become clear that there are multiple pathways that signal tissue damage to the brain and sound the pain alarm bell.

Interestingly, while the brain uses different pain signaling pathways depending on the type of damage, there is also redundancy to these pathways. Even more intriguing, these neural pathways morph and amplify signals in the case of chronic pain and pain caused by conditions affecting nerves themselves, even though the protective function of pain is no longer needed.

Painkillers work by tackling different parts of these pathways. Not every painkiller works for every type of pain, however. Because of the multitude and redundancy of pain pathways, a perfect painkiller is elusive. But in the meantime, understanding how existing painkillers work helps medical providers and patients use them for the best results.

Anti-Inflammatories

A bruise, sprain or broken bone from an injury all lead to tissue inflammation, an immune response that can lead to swelling and redness as the body tries to heal. Specialized nerve cells in the area of the injury called nociceptors sense the inflammatory chemicals the body produces and send pain signals to the brain.

Common over-the-counter anti-inflammatory painkillers work by decreasing inflammation in the injured area. These are particularly useful for musculoskeletal injuries or other pain problems caused by inflammation such as arthritis.

Nonsteroidal anti-inflammatories like ibuprofen (Advil, Motrin), naproxen (Aleve) and aspirin do this by blocking an enzyme called COX that plays a key role in a biochemical cascade that produces inflammatory chemicals. Blocking the cascade decreases the amount of inflammatory chemicals, and thereby reduces the pain signals sent to the brain.

While acetaminophen (Tylenol), also known as paracetamol, doesn’t reduce inflammation as NSAIDs do, it also inhibits COX enzymes and has similar pain-reducing effects. Prescription anti-inflammatory painkillers include other COX inhibitors, corticosteroids and, more recently, drugs that target and inactivate the inflammatory chemicals themselves. Aspirin and ibuprofen work by blocking the COX enzymes that play a key role in pain-causing processes.

Because inflammatory chemicals are involved in other important physiological functions beyond just sounding the pain alarm, medications that block them will have side effects and potential health risks, including irritating the stomach lining and affecting kidney function. Over-the-counter medications are generally safe if the directions on the bottle are followed strictly.

Corticosteroids like prednisone block the inflammatory cascade early on in the process, which is probably why they are so potent in reducing inflammation. However, because all the chemicals in the cascade are present in nearly every organ system, long-term use of steroids can pose many health risks that need to be discussed with a physician before starting a treatment plan.

Topical Medications

Many topical medications target nociceptors, the specialized nerves that detect tissue damage. Local anesthetics, like lidocaine, prevent these nerves from sending electrical signals to the brain.

The protein sensors on the tips of other sensory neurons in the skin are also targets for topical painkillers. Activating these proteins can elicit particular sensations that can lessen the pain by reducing the activity of the damage-sensing nerves, like the cooling sensation of menthol or the burning sensation of capsaicin.

Because these topical medications work on the tiny nerves in the skin, they are best used for pain directly affecting the skin. For example, a shingles infection can damage the nerves in the skin, causing them to become overactive and send persistent pain signals to the brain. Silencing those nerves with topical lidocaine or an overwhelming dose of capsaicin can reduce these pain signals.

Nerve Injury Medications

Nerve injuries, most commonly from arthritis and diabetes, can cause the pain-sensing part of the nervous system to become overactive. These injuries sound the pain alarm even in the absence of tissue damage. The best painkillers in these conditions are those that dampen that alarm.

Antiepileptic drugs, such as gabapentin (Neurontin), suppress the pain-sensing system by blocking electrical signaling in the nerves. However, gabapentin can also reduce nerve activity in other parts of the nervous system, potentially leading to sleepiness and confusion.

Antidepressants, such as duloxetine and nortriptyline, are thought to work by increasing certain neurotransmitters in the spinal cord and brain involved in regulating pain pathways. But they may also alter chemical signaling in the gastrointestinal tract, leading to an upset stomach.

All these medications are prescribed by doctors.

Opioids

Opioids are chemicals found or derived from the opium poppy. One of the earliest opioids, morphine, was purified in the 1800s. Since then, medical use of opioids has expanded to include many natural and synthetic derivatives of morphine with varying potency and duration. Some common examples include codeine, tramadol, hydrocodone, oxycodone, buprenorphine and fentanyl.

Opioids decrease pain by activating the body’s endorphin system. Endorphins are a type of opioid your body naturally produces that decreases incoming signals of injury and produces feelings of euphoria – the so-called “runner’s high.” Opioids simulate the effects of endorphins by acting on similar targets in the body.

While opioids can provide strong pain relief, they are not meant for long-term use because they are addictive.

Although opioids can decrease some types of acute pain, such as after surgery, musculoskeletal injuries like a broken leg or cancer pain, they are often ineffective for neuropathic injuries and chronic pain.

Because the body uses opioid receptors in other organ systems like the gastrointestinal tract and the lungs, side effects and risks include constipation and potentially fatal suppression of breathing. Prolonged use of opioids may also lead to tolerance, where more drug is required to get the same painkilling effect. This is why opioids can be addictive and are not intended for long-term use. All opioids are controlled substances and are carefully prescribed by doctors because of these side effects and risks.

Cannabinoids

Although cannabis has received a lot of attention for its potential medical uses, there isn’t sufficient evidence available to conclude that it can effectively treat pain. Since the use of cannabis is illegal at the federal level in the U.S., high-quality clinical research funded by the federal government has been lacking.

Researchers do know that the body naturally produces endocannabinoids, a form of the chemicals in cannabis, to decrease pain perception. Cannabinoids may also reduce inflammation. Given the lack of strong clinical evidence, physicians typically don’t recommend them over FDA-approved medications.

Matching Pain to Drug

While sounding the pain alarm is important for survival, dampening the klaxon when it’s too loud or unhelpful is sometimes necessary.

No existing medication can perfectly treat pain. Matching specific types of pain to drugs that target specific pathways can improve pain relief, but even then, medications can fail to work even for people with the same condition. More research that deepens the medical field’s understanding of the pain pathways and targets in the body can help lead to more effective treatments and improved pain management.

Rebecca Seal, PhD, is an Associate Professor of Neurobiology at University of Pittsburgh Health Sciences. Benedict Alter, MD, is an Assistant Professor of Anesthesiology and Perioperative Medicine, at University of Pittsburgh Health Sciences.

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

Why Untreated Pain Can Lead to Violence

By Dr. David Hanscom

I spent the first eight years of my medical practice performing surgery for back pain. Seattle, Washington in 1986 was one of the most aggressive regions in the country regarding the indications for this operation. The reason for the surge was that we were introduced to newer technology that allowed us to attain a solid spinal fusion a higher percent of the time.

I was excited to be able to offer the option of surgery to my patients and felt badly if I could not find a reason to help someone out with an operation. I followed all my patients indefinitely and worked hard on optimizing the rehab. My results seemed okay, but were not close to what I wanted them to be.

Then the data came out in 1994 that the success rate two years after a spine fusion for low back pain in an injured worker was only about 30 percent. I immediately stopped doing the procedure, but did not know what else to offer. In the meantime, I began my own descent into severe pain.

During this period, I performed a one-level lumbar fusion for a young gentleman in his early 30’s. He had a work-related injury and was in pain and disabled for over 3 years. I worked with him for about 6 months to stabilize his medications, supervised his physical therapy, and recommended several back injections. I knew nothing about chronic pain and the implications of a sensitized nervous system.

After the operation, he was worse. I saw him every two to four weeks for over a year to do what I could to help him. He became increasingly frustrated, and his behavior became so aggressive, I had to dismiss him from care. He quickly assaulted his grandmother for money for meds. He then headed with a gun to Eastern Washington, where I was holding a satellite clinic.

“He’s coming after you with a gun,” a relative warned. We alerted the police and fortunately he never showed up. I never heard from him again.

Around this time, one of my spine partner’s patients begin to scream and yell in the middle of a full waiting room because he had a failed spine surgery and his disability had run out. He proceeded to pick up a potted plant and throw it across the room. Fortunately, no one was injured.

Spine Surgeon Killed

Dr. Preston Phillips was a spine surgeon who was shot and killed a few weeks ago in Tulsa, Oklahoma by a patient who was angry about his post-operative pain. Phillips was a colleague of mine in Seattle. I did not know him well, but interacted with him in conferences and some patient care. He was as nice a person as I have ever worked with.

It may be easy to blame Phillips for doing a surgery that apparently failed, but it is not his fault. His patient had chronic back pain and almost none of us in medicine are trained to treat it effectively, in spite of the data being right in front of us for decades. We are treating almost all symptoms and disease from a structural perspective, when most of them arise from the body’s physiological state of being in a sustained “flight or fight” response.

Phillips was doing what he was trained to do with the best of intentions. His patient was trapped in an endless cycle of pain and surgery is often viewed as the definitive answer. It requires enduring even more pain and anxiety, so the level of disappointment is even higher when surgery fails.

The Abyss

One afternoon, I was listening to a patient attempting to describe the depth of her suffering and it hit me how deep and hopeless this hole of chronic pain is for most people. I realized that words were inadequate to encapsulate their degree of misery. Since no one seemed to have any answers, there was no apparent way out. The description that seemed to fit for this dark, bottomless pit was “The Abyss.”

A 2007 research paper documented that the effect of chronic pain on one’s life is similar to the impact of having terminal cancer. With cancer, you at least know the diagnosis and that there is an endpoint, one way or the other.

Suffering from terminal cancer is horrible, but living with constant pain without a cure, treatment or endpoint is even worse. Here are just a few of the ways:

• You have been told that there is nothing wrong and you have to live with your pain the best you can. The reality is that there is a physiological explanation for all of it.

• You may have been given the diagnosis of “Medically Unexplained Symptoms.” This is simply not true based on the last 20 years of basic science research.

• You are labeled by almost everyone, including the medical profession. The labels include drug seeker, malingerer, lazy, unmotivated, making things up, and not tough enough. The list is endless.

When you are trapped by anything, especially pain, your frustration and anger is deep and powerful. This scenario creates an even more intense flight or fight response. The blood supply to your brain shifts from the thinking center to the survival midbrain, and your behaviors may become irrational. There does not seem to be way out and you lose hope.

The literature also shows that pain is often worsened when surgery is performed in the presence of untreated chronic pain. I was also not aware of that data until after I quit my surgical practice. For Phillips’ patient to act out the way he did is unacceptable, but being trapped causes people to act irrationally.

Anger is not only destructive; it can be self-destructive. Suicide is problematic in patients suffering from relentless pain. For many, it seems to be the only way out. I was also at that point towards the end of my pain ordeal.

Physical therapy, chiropractic adjustments, injections, acupuncture, vocational retraining, medications, traction, inversion tables, and finally surgery. How many times can your expectations be dashed before you lose hope?

All the parties in the Tulsa shooting were victims of the business of medicine, and I put the blame squarely on its shoulders. Physicians are inadequately trained in chronic pain and data-based effective treatments are not usually covered by insurance. Physicians are often rushed, don’t have time to talk to patients, and their patients don’t feel heard. These are just some of the variables, but the energy is all aimed in the same direction: Money.

There are real solutions for your pain. Learning to calm and redirect your nervous system out of a threat state is a learned set of well-documented interventions. These techniques are not particularly profitable, but that is not the primary reason I went into medicine.

Both the medical profession and patients are going to have to demand a change in the paradigm of treating people. The first step being that you need to be heard and that takes time. It needs to happen soon.

David Hanscom, MD, is a retired spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

Hanscom has a website called The DOC Journey, in which he shares his own experience with chronic pain and offers patients a pathway out of mental and physical pain through mindful awareness and meditation.

He is the author of “Do You Really Need Spine Surgery?” and “Back in Control.”

Advocacy and Awareness Should Promote Healing, Not Division

By Mia Maysack, PNN Columnist

June is Migraine and Headache Awareness Month in the United States. This year’s theme is “Advocate for Access.” 

Although I understand the intent behind awareness months, to those of us who truly live with a non-stop condition, they can border on being a tad mundane. Especially when the execution of the awareness itself does very little to propel us forward in any meaningful way.

I live with deeply rooted and untreatable nerve damage from an incurable traumatic brain injury. Bacterial meningitis almost claimed my life as a child. My brain swelled up and still feels pained and swollen even now -- the very definition of intractable pain.  Because migraines are literally my each and every day reality, I'm sick and tired of focusing on or talking about them. 

From what I've witnessed, awareness campaigns are often a repetition of the same conversations, among the same people and within the same circles. We as "migraineurs" don't need to continuously hear about what we already know. In my opinion, it's an unnecessary use of precious energy and the impact doesn't go as far as it could. 

The "pain community" generally seems less of a community and more like a clique -- a repeated line up of only certain people’s voices being heard and a select few being invited to participate in events.  

It gets even worse than that:  I recall emerging onto the pain scene out of an absolute last resort. I jumped head first into involvement with every organization I could find and joined several support groups out of sheer desperation. One day, a routine migraine treatment with Botox went horribly awry -- to the point I still deal with the repercussions to this day. 

I immediately logged on to share this experience, not in an attempt to scare anyone but to raise awareness and hopefully assist in others not encountering the same thing I did. I hoped for some compassionate empathy but what I received was the exact opposite. 

I was torn to shreds online by keyboard warriors claiming not to feel well enough to physically function, but clearly energized to the point of dragging me down. Before I was given a chance to clarify or further explain, I was muted by administrators. This felt violent, uncalled for and oppressive. I was bullied and shunned at a point in time I couldn’t afford to be. 

These very same individuals have the audacity and nerve to schedule days of remembrance for those who could no longer accept or deal with their pain, while simultaneously playing an active role in pushing people over their edge, probably without even caring or realizing it. 

I view it as a sickness, that a person would demand and expect consideration and respect when they don't demonstrate or possess it for others. It's a contest of underlying comparison as well as competitive victimization: I've hurt longer than you, worse than you, my life has been harder than yours, and no one else's life is as bad as mine.  

Is that really a game you want to win? How could one ever expect to feel better with a fixation like that? 

I've come to realize that many who claim to want improvement aren't truly committed to it. It takes work, a retraining of our minds and an entirely new approach to not only how we care for ourselves, but how we care for others.  

This questionable code of conduct is an illness in itself. The resistance to actual improvement is in part what's keeping members of these groups sick -- not to mention the fact that some remain utterly attached to their conditions to the point they're unsure of any identity outside of them. If those they so faithfully follow were truly interested in the well-being of their devoted followers, they'd be attempting to shine a light on the darkness as opposed to benefiting or profiting from it. 

I remained quiet on this for a long time, but one thing about my advocacy is that it’s real. Some people love that and others hate it. I’m not afraid to burn bridges, especially the ones that I built. In case you haven’t noticed, the whole world is hurting and the healing of our planet is what matters. Not just you and your cause.   

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

Tips to Make Traveling Less Painful

By Victoria Reed, PNN Columnist

Now that summer is right around the corner, many people like to take a vacation to relax and enjoy the nice summer weather. Summer is my favorite season because I live in northeast Ohio, where the winters can be very cold and snowy. As someone who lives with chronic pain, having to go out in the blistering cold and navigate snow covered roads can make life even harder.

Recently I took a flight to California to attend a family member’s college graduation. It was a fairly long trip, lasting more than five hours. I’ve made trips to California from Ohio many times over the course of several decades. But over the years, as the comfort of riding on airplanes has diminished and as my back, joints and muscles have gotten sorer, the flight turned out to be less than pleasant. 

People in pain often have more to carry than the average person, and diabetics like me need to bring more medical supplies. I try to keep my carry-on backpack light, especially since rheumatoid arthritis (RA) has ravaged my shoulders, which frequently hurt.

Of course, I want to be comfortable when flying, so I regularly pack things such as a neck pillow and a blanket or two. In addition, I must bring snacks, prescription medications, a blood glucose testing kit, a small portable cooler and ice pack for my insulin, several insulin pens, and wrist braces for the inevitable in-flight RA flare. Add to that the standard personal items that I usually carry in my purse. I also like to bring my iPad (with noise canceling headphones) for entertainment.

Because of these necessities (and the not-so-necessary iPad), the backpack was quite heavy. By the time I arrived at my rental home-away-from-home with my dog, I was having a full-blown flare that involved joint pain, muscle pain and severe fatigue. 

I still needed to get some groceries, and after doing that and settling comfortably in bed, a sobering thought came to me: I can’t do this alone anymore.

The fact is, it has become too hard and exhausting. I love traveling, but airline travel is not what it was years ago. It used to be exciting to get on a plane, settle in a window seat and experience the beauty of being above the clouds and watching the mountains below them. But now airplanes are packed so tightly that there’s no room to be comfortable.  I try to book an aisle seat so that I have room to at least stretch my legs and get up to use the restroom without disturbing anyone.

Regardless, I would like to continue traveling because I love going to new places and exploring the beautiful United States. When the pandemic first became a thing, my husband and I purchased a camper, and we began taking trips to national and state parks with our dogs. It quickly became our preferred way of travel.

Because airline travel can be especially stressful for those of us with chronic illness, I recommend traveling by car or RV (if you can afford one). It is so much easier when you have everything you need in one place and are able to stop and stretch when you need to.

Also, if you need to take medications during your trip, they are easier to access than trying to get into your bag in an overhead bin or struggling to reach under the cramped airline seat. Road travel is also the best way for your pets to travel. Pets can be a great source of comfort to those suffering with pain.

However, if you must travel by airplane or just prefer to, there are things you can do to make it more comfortable. I recommend bringing items such as a blanket and a travel pillow. Wear comfortable shoes that can easily be taken off during the security process. Bring along a hoodie or sweater, as the plane tends to get chilly during the flight.

If you have severe mobility issues, arrange to have a wheelchair waiting at the airport or use one of the transport carts to get you to your gate. Pack some healthy snacks, as the ones they serve during the flight are very minimal and not very healthy. If you are a diabetic, pack some candy for those possible blood sugar lows. That way you don’t have to wait for the flight attendant with the drink cart containing sugary drinks.

If you have low back issues, bring an additional light banket to roll up and place behind your back. That could make a world of difference in your comfort level.

If you are traveling onboard with a pet, try to have a companion with you to assist. Having to carry the pet increases the load you already have to manage, and you lose the under-seat space where your purse or backpack is placed. Since many people bring their roller bags onboard, instead of checking them, trying to find overhead space for your personal bag is…well, trying!

Traveling these days can be a challenging experience, but it’s even more so for chronic pain sufferers. Taking a nice vacation or a weekend trip somewhere (if you can afford to) can be just what you need to relax, rejuvenate, boost your mood, and be a distraction from daily pain. With a little advanced planning, you can prevent it from becoming a miserable experience.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

A Pained Life: Do I Stay or Do I Go?

By Carol Levy, PNN Columnist

I have become housebound 90% of the time. I don't want to go out if the pain has already started. And if it hasn't, I don’t want to go out and risk setting it off.

I have looked for groups to join, online and preferably in “real life.” Each one I find invariably involves an activity that triggers my trigeminal neuralgia and causes eye pain.

I love to read, but a book club requires reading a chosen book within a specific period. Then at the meetings, looking through it as certain passages, paragraphs and pages are referenced.

I thought of trying to find a hiking or walking group. I need exercise and I enjoy walking. But if it is breezy or, even worse, windy or very sunny, those are triggers for the face and eye pain.

I adore cooking. But cooking groups require cooking together and reading recipes, which requires a lot of eye movement and usage, which are my personal recipe for causing severe pain.

Before Covid I found a local choral group. I wanted to be a singer when I was young and moved to New York in my early 20's in search of a career as a singer. But six months after I got to NYC, the pain started and brought a halt to all my hopes and dreams of a singing career.  

The choral group offered a chance to sing and, more importantly, to be with others who love to sing. But it is a horror in terms of having to use my eyes to read the music and to follow the choral director's hand movements as she directs the timing.

The other night we had a concert. We only go to nursing homes, so the audience is happy to see us and accepts that we are kind of raggedy. I was excited that I would be performing with the group, but I was also very afraid. I would have to use my eyes continuously and the lighting may be too bright (another source of severe pain for me).

Like many of us, I don't like taking opioids. I have found through the years that none work for me, so my doctors and I agreed on codeine. I take it because it makes me feel as though I am doing something about the pain, something that gives me a false sense of control over it, a small amount of succor. But it’s no help for the pain.

So what do I do? Do I tell the director I can't do the concert? That would be very unfair to her and the other members (there are only 11 of us). Or do I try to smile, sing and not grimace through the ever-increasing pain?

Most people's lives are based on decisions. Do I take the car or the bus? Do I have the steak or the vegetable plate? Do I buy the house or rent an apartment? Do I tell the boss I quit? Many of the decisions we have to make are often life-changing or life-altering.

Outside of decisions regarding medical treatments that have potential risks, our choices are rarely life-altering. And yet, they can be just as devastating. Do I go and make the pain worse? Or do I stay home and regret not going? Is it easier to hide from life or easier to face the pain?

That is a conundrum that has no easy answer.

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.

To Each Life Their Own

By Mia Maysack, PNN Columnist

May is Mental Health Awareness Month, a good time to write about a topic that needs more attention, but one that makes many of us uncomfortable: suicide.

I know people who have tried to end their lives. There was one who almost succeeded. I was still in decent enough health at the time to be working in the nursing field and it just so happened to be my hospital they were brought to. I entered the room in time to watch their stomach being pumped with charcoal, which is the process used to rid the body of whatever has been ingested.  

After being revived, this person's first words to me were: "Why didn't you let me die?" 

My already broken heart shattered once again into a million pieces. Being much younger at the time, I couldn't begin to understand and took the experience personally. Now I’m old enough to know that someone’s choices about their own life have absolutely nothing to do with me. 

Fast forward a few years, and I found myself in a clinical support group at a time when my pain ran rampant and dictated every aspect of my existence. That’s what led me to the textbook-based, power-point class that was instructed by low-energy penny counters. I was that desperate for help. 

During one session, we broke out into smaller groups. On one side of me, there was someone who'd lived in unmanageable pain for 40 years. They were fed up with prior authorizations, insurance hoops and failed treatment options, and confided to the group that they were making plans to move where medically assisted suicide was legal. 

On my other side was someone who claimed they had never felt suicidal and couldn't begin to relate to the other person. In fact, it made them so uncomfortable that they excused themselves from the conversation and went to go tell on the other individual. 

It's human nature to avoid discomfort, but we don't always know how to create space for others who are suffering without also judging them. 

Between these two extremes, there was me -- literally and figuratively in the middle. After class, I watched as the instructors approached the individual in a hushed whisper and exchanged a slip of paper with a suicide hotline number on it.

I witnessed this person break down -- almost as if they were being scolded -- and couldn't help but think that if it was me standing on the edge and was essentially being told to go away and deal with it elsewhere, that might be the very last thing a person would do. And how that would be such a failure on our part. 

It was then that I began my own support group network, which eventually evolved into more of a self-help resource because I personally feel that while support is important, it can only take us so far. 

Despite living in agony, I spent many years clinging to my medical career. At one point I was working in hospice, where I was confronted daily by the truest definition of suffering -- seeing patients barely hanging on for the sake of their families, despite their desire to let go. 

It was then I contemplated who is being more selfish. Is it the person who no longer wants to remain alive because they are already dead inside or those demanding that they go on living? 

There's no right answer to that question. That isn't to belittle how anyone feels on either end of that spectrum, but more a rhetorical point to ponder.  

For many reasons, these last couple of years have been the most difficult of my life and I came the closest I've ever been to ending my own life. Lack of hope is one of the most dangerous places to be. The darkness is all consuming.  

I'm someone who is known for their positivity. It is noticed when I am not acting like myself or feeling a lower level of energy.  People depend upon me to be level headed and focused on the more uplifting aspects of life, but that can be a heavy weight to bear at times. 

It's a blessing to be in the position that I'm in and provide the type of counsel that I do. In fact, I now understand on a deeper level why my medical career meant so much to me. Showing up for others during their most trying times and hardest moments helped distract myself from my own inner turmoil. 

The same can be said about advocacy. Showing up for others whether or not I feel up to it, guiding them to their own voice and sharing their truth  is a way to make something out of my pain. Perhaps I've endured all that I have to gift others with what I've managed to learn. If being human was just about me and what I go through, there’s no way I’d be able to make it.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

The Real Story Behind the Overdose Epidemic

By Stefan Franzen, Guest Columnist

A recent commentary in The New York Times by German Lopez (“The Perils of Legalization’) flatly states that prescription opioids caused the overdose epidemic.

“The problem began with a legal, regulated drug: prescription painkillers,” Mr. Lopez writes, while building a case against legalization as a solution to our drug problems.

“Many of the people now using heroin or fentanyl began with painkillers. And drug cartels started to more aggressively ship heroin and fentanyl to the U.S. once they saw a promising customer base in the growing number of painkiller users.”

Mr. Lopez is confused. Heroin has been illegal in the U.S. since Congress passed the Harrison Act in 1914, yet that hasn’t stopped millions of Americans from trying heroin, just as Prohibition failed to stop people from drinking alcohol. The same is true for other illegal drugs, such cocaine, LSD and marijuana.

Prescription opioids are legal drugs when obtained by a doctor’s prescription. To suggest that we tried legalization and it failed is simply not true. Perhaps Mr. Lopez is confusing the liberalization of opioid prescribing that began in 1997 with legalization. In that case, yes, there was a movement in the medical community and by some drug makers to expand the use of opioids for pain.

Mr. Lopez does report correctly that many of the problems that arose during that period resulted from the failure of the Drug Enforcement Administration to carry out its responsibility to investigate when there was evidence of massive shipments of painkillers to rural counties by companies such as Purdue Pharma.

The role of the government in failing to protect consumers is the real story missed by the mainstream media, who are too busy informing the public about the latest lawsuit against pharmaceutical companies and opioid distributors. The consumers who were hurt the most were, and still are, persistent pain patients.

Of course, it is also tragic that many people were caught up in opioid prescribing and became addicted, due to a complete failure to investigate when Purdue began sending millions of OxyContin pills to rural counties in states like West Virginia and Tennessee. The mistake made here was not “legalization.” It was permitting greed and corruption to co-opt an effort by the medical community to reach people who had the greatest pain.

It is a false narrative that the overdose epidemic arose from the expansion of opioid prescribing and that drug cartels are only targeting pain patients.

Recent data from the Centers for Disease Control and Prevention show why that is a totally false assumption. The CDC estimates that nearly 108,000 people died from overdoses in 2021, a 15% increase from the year before. Drug deaths involving synthetic opioids – mostly illicit fentanyl – rose to 71,000, and there were 33,000 deaths linked to methamphetamine and other stimulants.  

Only 13,000 overdoses last year were linked to prescription opioids -- about 12% of all drug deaths -- but there is no data available to tell us how many of those overdoses involved patients who were actually prescribed the drugs. It’s safe to assume most of those who died took a prescription opioid intended for someone else that was bought or stolen. Or perhaps they took one of the millions of counterfeit pills flooding the country.     

Overdose deaths due to illicit fentanyl and other street drugs have been rising for years, yet nearly every media story continues to exaggerate the role of prescription opioids, leaving the public with the completely mistaken impression that doctors prescribing to pain patients caused the overdose epidemic. Commentators like Mr. Lopez, who have few facts to back up their statements, have no idea how much harm these statements cause to our most vulnerable citizens.

There was no “legalization” of prescription drugs, since they were already legal. And it was not a failed experiment to treat people in pain with greater decency -- just greed, corruption and incompetence that spoiled efforts to bring some quality of life to patients who suffer the worst types of pain, whether it is sickle cell disease, ankylosing spondylitis, psoriatic arthritis, Ehlers-Danlos syndrome, muscular dystrophy or adhesive arachnoiditis.

Others who suffer terrible pain are wounded veterans, car accident survivors and burn victims. I did not mention cancer, which obviously can be extremely painful, only because cancer is the one disease that commentators sometimes admit should be treated with opioid therapy. Lacking a pain meter to provide data, I will simply point out that any disease that causes substantial physiological changes, inflammation or tissue degeneration can be intensely painful. We should all respect that fact. We are all susceptible to pain.   

We must meet the anti-opioid zealots whenever they write or speak and call them out for their inaccurate and ill-informed commentary. Sadly, forums like National Public Radio and The New York Times did not respond to my attempts to call attention to the facts they got wrong. As a scientist, I believe in evidence.

Stefan Franzen, PhD, is a Professor of Chemistry at North Carolina State University.

Franzen is the author of “Patient Z” – a book that looks at pain, addiction and the opioid crisis through the eyes of a patient who can’t find good pain care because opioid medication has been criminalized and many doctors are now too afraid to prescribe it.