A Pained Life: Do You Know the Magic Words?

By Carol Levy, PNN Columnist

My chronic pain started with a spontaneous, horrific and sharp pain, like a blade slicing through my left temple. Within two weeks, I was disabled by it. Almost everything triggered the pain, even the tiniest wisp of hair or whisper of a breeze.

I was 26 at the time. I could only afford to go to a local hospital clinic. No matter which doctor saw me or their specialty, no one could figure it out.

Then I started dating Scott, one of the ophthalmology residents. On our date, Scott kept trying to touch the left side of my face. I kept pulling away.

“Where shouldn’t I touch you?” he asked.

I mapped out the area on the left side of my face, from my scalp down to my cheek. The exact same area I indicated at all of my clinic visits. Scott looked shocked.

“I know what you have. You have trigeminal neuralgia,” he said.

I knew of the horrors of this pain. I didn't want this diagnosis. But at least now I had a name for it.

Fast forward to when I could afford a private doctor. I went to see a neuro-ophthalmologist and told him my story. Feeling anxious and afraid, I related it in a manner that may not have been very coherent as it might otherwise have been.

“Don’t be so schizophrenic,” the doctor said. “Tell me what happened more clearly.”

He decided I was “anxious” and that was probably the cause of my pain. He told me to come back in three months and see if anything had changed by then.

I didn’t want to go back, but what choice did I have? It turned out to be a very good decision.  It was at this appointment I learned that “magic words” exist in the medical world.

“Is the pain the same?” the doctor asked. When I said yes, he said to come back in another three months.

I was walking to the door when a thought hit me. “You know for a few seconds today I thought it was finally over,” I said. He immediately perked up

“What made you think that?” he asked.

I was on the train and a lady had brushed against my face. And the pain didn’t come right away. I was happy for abuut 20 seconds, when the pain hit me like a sucker punch.

“It’s time we brought you into the hospital,” the doctor said. “We need to do some tests.”

I had no way of knowing, but I had uttered the magic words. Unbeknownst to me, that specific change was a distinct sign of trigeminal neuralgia. 

How many times have we gone to the doctor and gotten the “I dunno” or “I don’t understand your complaint” answer? 

I have a feeling for many of our disorders there are magic words like “abracadabra” or “open sesame” that change the way doctors see us. The sad part is there is no good way to figure them out. Do too much research and you may get labeled a hypochondriac. Do none and you'll never know the secret words. Is there a middle ground? 

It reminds me of the fairy tale Rumpelstiltskin, about an imp who spins straw into gold in exchange for a girl's firstborn child. If the girl guesses his name within three days, she could keep her baby. She does, and Rumpelstiltskin goes away. 

For many of us, if we guess the right words, we get the right tests, the right diagnosis and maybe even the right treatment. If only it wasn’t a fairy tale.

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.

10 Reasons for Lawmakers To Oppose Limits on Rx Opioids

By Matthew Giarmo, PhD, Guest Columnist

1. Government Leaders Have a Choice

History may record one day that politicians and policymakers had a choice: They could champion the rights of 50 million Americans in chronic pain who desperately need a hero or they could be scorned for unnecessary cruelty and playing politics with people's pain.

The gathering storm is a backlash to the heightened regulatory and surveillance culture that has commandeered our nation’s healthcare system. It will not go unanswered. We no longer allow government into our bedrooms to police sexual behavior, gender identity and abortion rights. And we sure as hell will not allow government to spy on our doctors and medicine cabinets.

The government has blood on its hands from chronic pain patients resorting to suicide and street drugs after being abandoned by physicians who fear imprisonment by DEA agents who have no medical training or patient knowledge.

2. Opioids Misunderstood

Opioids are not only cheap; they are uniquely effective in restoring quality and functionality to millions of Americans who suffer from chronic or intractable pain. Opioid medication is safe when used properly, while long term use of ibuprofen and acetaminophen is toxic.

When we examine data on efficacy, toxicity, dependency, teen use, mortality and preventable causes of death, opioids do not warrant consideration as a threat to national health security. There is no opioid "crisis" or "epidemic."

I believe any determination to the contrary is a byproduct of inappropriate agency regulation (the 2016 CDC Opioid Guideline) and biased and conflicted advice from an extremist sect (Physicians for Responsible Opioid Prescribing) operating at the fringes of the medical community. The growing realization among doctors and patients is that "the fools are in charge" and "the foxes are guarding the hen house.”

Inappropriate prescribing that resulted in spikes of opioid abuse, such as pill mills and dentists disposed to trade 60 Percocet for wisdom teeth, ended several years ago. So did the marketing of extended-release formulations like OxyContin.

3. Junk Science

You may have been seduced by contrived overdose statistics (“500,000 people died from an opioid overdose”) that remain viral, despite the CDC itself acknowledging that 48% of deaths due to illicit fentanyl were erroneously counted as deaths due to a prescription opioid.

When we break down the politically convenient and alarmist statistics into deaths involving polysubstance use, suicide, reckless dosing out of frustration with pain, and drugs that were never prescribed to the decedent, the 125 deaths per day initially claimed by the CDC looks more like 5 deaths a day.

It would be more appropriate to attribute these fatalities more to pain itself than to pain medication, as well as drug experimentation, depression or diversion. Most of those who abused OxyContin reported never having a valid script. That is no basis on which to separate chronic pain patients from their medication.

But as long as an opioid shows up in a post-mortem toxicology screen, deaths are being classified as an opioid overdose; even when the opioid was one of several drugs consumed, when it cannot be determined whether the opioid was consumed in a medically relevant way, and even when the decedent was hit by a bus.

The overdose numbers had to be gamed, which makes sense when you consider that in 70% of cases, rulings on causes of death are made before the toxicology data is even available. Especially when you consider that those sky-high opioid fatalities seem out of step with the low rates of dependency (6% for chronic pain patients, 0.7% for acute pain and less than 0.1% for post surgical pain).

As a social psychologist, government analyst and research critic, I have identified about a dozen ways the science of opioids has been corrupted for financial gain, professional survival or advancement, and in service of a political cause.

One example is the claim that “80% of heroin users first misused prescription opioids.” That canard was violently ripped from a SAMHSA report and is misleadingly used to imply that 4 in 5 patients prescribed painkillers eventually use heroin. On the contrary, less than 4% of prescription opioid users turn to heroin. 

Incidentally, 67% of heroin addicts reported that their prior use of prescription painkillers had not occurred in the past year. Hardly seems like an irresistible urge to me.

4. Not Knowing When to Say When

Much like Sen. Joe McCarthy wreaked havoc on a nation with reckless claims about communist infiltrators, opioid McCarthyism is killing our most vulnerable and innocent populations -- veterans, senior citizens, persons with disabilities and the chronically ill.

Regulations complicate and delay the dispensing of legal scripts for these patients at the pharmacy, creating a "what's-it-gonna-be-this-time" syndrome in which patients endure a new burden every month.

Prescriptions for opioid painkillers have declined 40% since 2011, while overdoses on heroin and illicit fentanyl have soared. As National Public Radio falsely reported that doctors are “still flooding the U.S. with opioid prescriptions,” solid research offers definitive evidence that prescriptive austerity is helping to drive the spike in overdose fatalities.

A recently published study found that among 113,000 patients on long-term opioid therapy, the incidence of a non-fatal overdose among those subjected to tapering was 68% higher than those who were not tapered. The incidence of a mental health crisis such as depression, anxiety or attempted suicide was 128% higher among those who were tapered.  

5. The Inherent Absurdity of MME Thresholds

Forced tapering is undertaken to achieve an arbitrary one-size-fits-all threshold that makes no sense. There is no basis in science or nature for determining how much medication is too much. As long as patients are started at the lowest effective dose and titrated up gradually, as dictated by unresolved pain and any side effects, there is no limit to how much a patient might need 5, 10 or 15 years downstream.

Arbitrary dose limits defined in terms of morphine milligram equivalents (MME) ignore the importance of individual differences in medical diagnosis, treatment history (tolerance), and enzyme-mediated (genetic) sensitivity to pain and to pain medication. MME thresholds falsely assume that all opioids are equal and impact all patients the same way.

MMEs may be convenient for bureaucrats and expedient for politicians, but their scientific utility -- and by extension the CDC guideline itself -- is nullified by differences in the half-life of different drugs, differences in their absorption into the bloodstream, and differences in their rate of metabolism in different people.

6. Without Liberty or Justice for All

For arguments sake, let us suppose that we lose as many souls to prescription opioids as we do to car accidents. What have we done to rein in this other preventable cause of death? We create laws requiring safety belts, air bags, annual inspections, and compliance with speed limits. We do not criminalize the sale, operation and distribution of Honda Civics. We do not restrict the number of cars on the road. And we do not drop DEA teams behind enemy lines in Detroit.

But at a time when Americans are growing weary with a drug war that has lasted longer than our wars in Vietnam and Afghanistan -- and when Americans have softened their views on marijuana -- the DEA, perhaps in a desperate search for new bogeymen, expanded its theater of operations to treat pharmaceutical companies as drug cartels, doctors as dealers, and patients as addicts.

As we speak, your state is creating a mini-DEA inside its Department of Health or Medical Board that weaponizes the Prescription Drug Monitoring Program as a surveillance and detection tool, to spy on and red flag each patient and doctor whose script or “NARX Score” exceeds an arbitrary limit for which no basis in science or nature exists.

Think about all the sacred ideals we’ve abandoned to support our failed effort to bring a specious “opioid crisis” under control: the Constitution; a compassionate care system that had been the cornerstone of a civilization; a physician’s right to exercise clinical judgement; their right to due process; and a system of individualized, patient-centered care.

Government is obliged to ease civil unrest -- not foment it. But federal and state governments are hell bent on driving wedges between groups of stakeholders: physicians against patients; patients and physicians against pharmacists; patients against the public at large; physicians against their own office staffs; patients against employers; and physicians against medical boards. That is McCarthyism.  

All too commonplace on social media are acrimonious altercations between the grieving survivors of overdose victims and those caring for friends or family living with chronic pain. There's no reason we can't simultaneously provide the medicine, assistance and requisite sympathy to Americans who need addiction treatment and Americans who need pain medication -- especially when we consider that only 6% of chronic pain patients prescribed painkillers develop dependency.

The NARX Score itself, a deeply flawed hotdog of a composite that ostensibly assigns a number to a person based on their supposed risk of overdose, is morally and intellectually offensive. It does little to assuage those who use the term “pain patient genocide" and compare it to the demonization and murder of 11 million Jews, gypsies, homosexuals and criminals in Germany during the Second World War.

7. Opioid Crisis As a Scapegoat

Have we as a nation become more addicted to the "opioid crisis" than we ever were to opioids? For our nation’s leaders, opioids have become an irresistible diversion and scapegoat. It’s a means to repair a tarnished reputation (see Chris Christie) or display rare bipartisan unity to disarm a cynical and frustrated constituency.

In a striking reversal of cause and effect, government officials would have you blame opioids for the loss of jobs, identities, finances and relationships that have come to define life in 21st century America. In reality, we have two crises: a crisis of chronic pain estimated to involve 50 million Americans and a psychosocial crisis linked to the combined effects of economic disparity, globalization, automation, immigration, social media, terrorism, pandemics, and the dissolution of national unity into political sects and interests.

Opioid critics like to point out that opioids only mask painful symptoms rather than address the underlying cause. But isn’t that what government officials do when they attempt to conceal or compensate for the true ills of our nation by playing whack-a-mole with prescription pain relievers?

8. The One-Track Mind

Last year a record 93,331 Americans died of a drug overdose, the vast majority involving illicit fentanyl and other street drugs, not prescription opioids.

We observed a 190% rise in cocaine overdoses and a 500% rise in overdoses involving methamphetamine. We have also seen increases in the abuse of alcohol and OTC substances like dextramorphan, diphenhydramine, ibuprofen, acetaminophen and loperamide, a drug used to treat diarrhea.

How many of those deaths can we blame on Purdue Pharma? Will collecting billions of dollars in settlement money from opioid distributors solve our overdose problem? Or will it enrich plaintiff law firms just like the Tobacco Settlement did?

9. An Unfair Fight

I was inspired to write this by a family -- MY family. I know what it’s like to see a patient’s treatment plan forcibly altered and how it affects not only the patient, but all those who cherish and depend on them. Children get less attention. Spouses assume a greater share of household responsibilities. Employers deal with lower productivity.

This memo and a lengthier report will go out to families and physicians across the country with the aid of hundreds of patient-advocate communities I mobilized on social media platforms. Still, it hardly seems like a fair fight. The meek of the Earth versus an army of federally funded Type A regulators and paid expert witnesses falling over one another to advance their careers and pad their bank accounts by making life harder for people to treat their pain.

10. Taking the Battle to the States

You may decide against reading my report, but you will likely hear about it from peers, co-workers or constituents in the months to come. It is making the rounds. State legislatures. Medical boards. Medical associations. Patient advocacy groups. Defense attorneys (I was twice asked to serve as an expert witness by physician counsel). Federal agencies.

In the past two weeks, my associates have disseminated my report to the American Medical Association, AARP, federal and state officials, members of Congress and the White House.

I invite readers to do the same by downloading my report, “There Is No Crisis.” We’re just getting started.

Matthew Giarmo, PhD, is a social psychologist who has worked with terminally ill cancer patients. Matthew authors research-based reports in social phenomena, including the impact on workforce development of the Software Revolution and Great Recession, and the degradation of science by professional and institutional requirements. 

My Migraine Journey: From Electrodes to Cannabis

By Gabriella Kelly-Davies, PNN Columnist

The room swirled as my eyes fluttered open, and I could feel something tight around my neck. It felt like a vice, making it difficult to swallow. The antiseptic smell was familiar, but I couldn’t quite place it. Struggling to focus my eyes, I heard a voice I knew well — it was Ben, a doctor at the hospital where I worked as a physiotherapist.

“How do you feel?” Ben said, shining a bright torch into my eyes.

“Where am I?”

“You’re in emergency. An ambulance brought you here. You were lying on the side of the road, unconscious.”

Ben told me the ambulance officers had received reports of cyclists being pushed off their bikes at the quieter end of the beach. They assumed that’s what had happened to me.

That day, my twenty-fourth birthday, heralded the onset of a life of migraine attacks.

Gabriella Kelly-Davies

During the 1990s, I regularly traveled around Australia for work while studying business at night. In the plane as I read my textbooks, a pain like an electric shock would shoot up the back of my neck and head.

It lasted for several minutes, then a deep ache started in the base of my skull. The pain eventually spread upwards, fanning out until it covered the entire back of my head and temples.

All too soon, the pain I experienced while flying became more regular and was most severe after sailing and playing my piano or cello. Cycling and tennis also triggered it.

In 1996, I started a job in Parliament House, Canberra as a policy adviser to a senior politician. Mid-morning, I would feel shooting pains running up the back of my head, accompanied by waves of intense nausea. Soon afterwards, a deep ache in the base of my skull started, quickly spreading up over my head and into my temples. My eyes felt gritty, as if they were full of sand, and I yearned for them to explode to release the mounting pressure inside them.

Often when the pain was at its worst, I couldn’t think of the words I wanted to say, infuriating some colleagues. Sometimes I couldn’t string two words together coherently. My mouth refused to form the words I wanted to say, as if the messages weren’t getting through from my brain to the muscles in my face.

The Merry-Go-Round

Returning to Sydney in 1999, I despaired of ever being free of pain and nausea. I consulted an endless round of specialists and health professionals, but none of them helped much. I felt overwhelmed by head and neck pain and a general sense of ever-increasing pressure inside my head and eyes. I fantasized about boring a hole through the base of my skull with an electric drill to release the tension.

Between 2000 and 2005, I progressively stopped doing all the things I most loved because they triggered migraine attacks. My goal became getting through a day of work, returning home and lying in a dark room with a series of ice packs under my neck.

Anxiety about being stigmatized and the intolerance I perceived in some colleagues at work prevented me from admitting I was in pain. Instead, I worked like a Trojan to ensure I maintained a high level of performance and no one could accuse me of using pain as an excuse to under-perform.  

While on the endless merry-go-round of seeking solutions, I ended up at the Michael J. Cousins Pain Management and Research Centre in Sydney. Dr. Cousins and a team of health professionals assessed me. They diagnosed occipital neuralgia, a form of headache that can activate migraine attacks. I had chronic pain, a malfunction in the way the nervous system processes pain signals.

The team suggested an experimental treatment. It involved implanting tiny electrodes into the back of my head and neck to block the pain signals from traveling along the nerves in my head. I agreed to the surgery and afterwards; I had fewer migraine attacks than previously. I even had a few completely pain-free days.

One year later, I felt something sharp sticking out from the base of my skull. My pain specialist discovered an electrode wire protruding through the skin. Tests revealed the electrodes were infected, so they were removed. Afterwards, migraine attacks returned in full force.

Three months later, new electrodes were implanted, but they didn’t work as well, possibly because scar tissue blocked transmission of the electric current. Still, overall I was better than before the initial surgery. I worked full time and sang in a choir at Sydney Opera House.

Disappointingly, disaster struck in 2008. A superbug infected the electrodes, forcing my doctor to remove them. Once the infection cleared and the electrodes were re-implanted, they were only partially successful, and my life returned to its pre-electrode state.

Multidisciplinary Pain Management

A significant turning point occurred in 2009 when I participated in a three-week multidisciplinary pain management program. Each day, a team of pain specialists gave lectures on topics such as chronic pain and how it differs from acute pain. The physiotherapists started us on a carefully graded exercise program, and a psychologist taught us cognitive behavioural therapy techniques to help us change the way we thought about and dealt with pain. Surprisingly, the exercises didn’t cause a flare-up and at last I felt as if I was making progress.

The pain management program taught me to stop catastrophizing and to believe I had the power to change how I reacted to pain. For years, I practiced the stretches and strengthening exercises every night after work. I also applied the psychological techniques, and they became central to my daily routine.

Twelve years later, I continue to live with migraine. I’ve tried several migraine preventatives, but none helped. Eight months ago, I started taking medicinal cannabis and it has significantly reduced the frequency and severity of migraine attacks.

Over the years I’ve learned to reduce the impact of migraine on my life by using techniques such as mindfulness meditation and carefully paced exercise that turn down the volume of pain signals racing through my malfunctioning nervous system.

Chronic pain is complex and difficult to treat but it is possible to live well with pain. I encourage you to do a multidisciplinary pain management program and continue your search for approaches that reduce the impact of pain on your life.  

Gabriella Kelly-Davies is a biographer and studied biography writing at the University of Oxford, Australian National University and Sydney University. She recently authored “Breaking Through the Pain Barrier,” a biography of trailblazing Australian pain specialist Dr. Michael Cousins. Gabriella is President of Life Stories Australia Association and founder of Share your life story.

The Fentanyl Exposure Myth Must End

By Roger Chriss, PNN Columnist

There is a pervasive belief that exposure to even a speck of illicit fentanyl can be immediately life-threatening. The most recent example is a story from USA Today.

“Dramatic body camera footage shows that a sheriff’s deputy in California nearly died after being exposed to fentanyl at an arrest last month,” the story begins, explaining that Deputy David Faiivae collapsed after finding a “white substance” in the trunk of a suspect’s car on July 3.

Faiivae appears to be revived by his training officer with a nasal spray of naloxone, an anti-overdose medication. The body camera video of the incident was so dramatic, the San Diego County Sheriff’s Department turned it into a training video:

There are reasons to be cautious with stories like this. Fentanyl is a potent synthetic opioid responsible for tens of thousands of overdose deaths, but experts say it’s not nearly as dangerous as it is often portrayed.

"You can't just touch fentanyl and overdose," Ryan Marino, medical director for toxicology and addiction at University Hospitals in Cleveland told NBC News. "It doesn't just get into the air and make people overdose.

"We have a lot of scientific evidence and a good knowledge of chemical laws and the way that these drugs work that says this is impossible."

Casual contact with fentanyl is not generally life-threatening. As Marino explains in a guide for first responders, fentanyl powder is not absorbed through the skin and powdered opioids do not aerosolize.

This is a well-founded view. Drs. Lewis Nelson and Jeanmarie Perrone wrote in STAT News that “there is clear evidence that passive exposure to fentanyl does not result in clinical toxicity.”

But stories of passive exposure to fentanyl being life-threatening are becoming more common. Google Trends shows a rapid uptick from 2017 onward after media coverage of an Ohio patrol officer supposedly overdosing on fentanyl after brushing a bit of powder from his shirt.

According to a 2020 study in the International Journal of Drug Policy, there were 551 news articles in 48 states about casual contact with fentanyl from 2015 to 2019. The reports received about 450,000 Facebook shares, potentially reaching nearly 70 million people.

“Fueled by misinformation, fentanyl panic has harmed public health through complicating overdose rescue while rationalizing hyper-punitive criminal laws, wasteful expenditures, and proposals to curtail vital access to pain pharmacotherapy,” the study found.

If passive exposure to fentanyl were as risky as media and law enforcement suggest, wouldn’t there be a flood of bodies from illicit drug operations? Drug labs do not operate with robust safety measures and street dealers handle drugs in ways that would make passive exposure inevitable. Deaths result when fentanyl is ingested, not from casual contact.

The misperceptions of passive exposure risks are impacting law enforcement, emergency services and medical care. As a result, pharmacy professor Lucas Hill joined with Marino and others to write an open letter this week to media outlets called “Retraction Request for Dangerous Drug Misinformation.”

“We are issuing this letter to request a retraction and correction of your recent article which perpetuates a myth: that casual contact with potent synthetic opioids such as fentanyl poses a health risk to first responders. This is dangerous misinformation that can cause harm both to people who use opioids and to members of the law enforcement community. We greatly appreciate your cooperation in addressing this error.”

The letter is the latest attempt to reduce the harms of media misinformation about drugs. But as with so many things involving drugs, mythology drives too much of the media and law enforcement narrative.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.   

The Ever Changing Rules of CRPS

By Cynthia Toussaint, PNN Columnist

Two weeks ago, writhing at a level 10 pain, struggling to position my heating pad just right for a moment of relief, I told God that if it was time to take me, that was okay.

I thought I knew the rules of Complex Regional Pain Syndrome. After nearly four decades of trying to sidestep the burning torture, making every attempt to not poke the bear, I was confident I’d cracked the code enough to ward off any long-term flare. The kind that makes you think about dying.

But a shot of emotionally heightened experience, a jigger of COVID vaccine, and a splash of post-chemo recovery combined to turn the rules on their head. I think.

No question, I needed to see my mom. Due to my bout with aggressive breast cancer, a once-in-a-century pandemic, toxic family members and my mom’s advanced Alzheimer’s, I hadn’t seen her in a year and a half. When COVID loosened and I discovered she’d been placed in a nursing facility, a window of opportunity opened for a possible visit without seeing family members that harm and hurt.

The heavens opened and I got to spend a glorious day with an angel disguised as my mom.

But before that, wheeling up to the facility, my profound dread leapt to the nth degree, fearful that I might be facing a firing squad made up of familial cruelty. That, along with the emotional elation of time together with Mom – loving each other through her scattered cognition – sent waves of arousal through my nervous system, sparking over-the-moon pain as my partner, John, and I made our six-hour return trek to LA.

Over the next days, then weeks, as my pain maintained its grip, I knew in my gut this flare was something altogether new and terrible. But why? As I learned long COVID was inciting cytokine storms of pain and fatigue, and that many of my vaccinated sisters in pain were experiencing epic flares, I postulated that the vaccine (which had already re-erupted chemo side-effects) was probably the secret sauce for my exquisite agony. 

Without a doubt, this is the worst CRPS flare I’ve had in 35 years – and that one from the Reagan 80’s left me using a wheelchair to this day. Imagine my fear of what I might lose this go around. I’ll tell you, it’s soul-shaking.

In the past when I’ve experienced bad flares, my doctors have encouraged me to temporarily go up on gabapentin (Neurontin), a nerve medication I’ve taken for many years with good results. Because I despise taking drugs and never trust the “temporary” part, I’ve always resisted increasing the dose. That is, until now. Truth be told, a month into this flare, it took only a nudge from my doctor to increase my daily gabapentin in-take by 300mgs.

What a mistake. Fair to say, while the increase lowered my pain level by about three points, a HUGE improvement, the side effects were scorched-earth. I was wiped out to the point of being barely functional. This “never-a-napper” was falling asleep mid-day and I would wake with dementia-level disorientation. John had to remind me what day it was, where I lived, and what was happening in our lives.

I also suffered with suicidal ideation, compulsive thoughts, depression, joint pain, constipation, blurry vision and spatial difficulties. I’d traded one hell for another.

On the fourth night, I turned in bed and woke to the room (or was it my head?) spinning. The vertigo alerted me to the fact that if I continued this drug increase, I’d likely fall – and that could be catastrophic.

The next morning, with my doctor’s consent, I went off the extra gabapentin and, in its place, started Alpha Lipoic Acid. I took this supplement during chemo to ward off neuropathy, and it did the trick without side effects. Okay, to be fair, I wasn’t aware that it made my urine smell like burning tires as the chemo drugs masked that little nugget. Sorry, John.

That night, I experienced my worst pain ever, but, again, why? Even more confusing, I woke with honest-to-goodness relief, the last thing I expected. In fact, for the first time in weeks, I didn’t describe my morning swim as torture. As of this writing, the relief is holding, though threatening to return to the “I’m ready to die” level. But now, I have a taste of hope.

Still, I’m exhausted, scared and confused.

This is the essence of CRPS. It can come and go with little apparent cause. It can hide and seek, and its rules of engagement are ever shifting, ever evolving. It’s a devil that pokes its white-hot pitchfork of torture whenever, wherever it feels the urge. It’s crazy-making.

For all this madness, for all the uncertainty about my hell flare, these things I know for sure.

I did the right thing by getting the vaccine. COVID, or one of its variants, would (still might) kill me. I’m also doing my part to end this pandemic.

Chemo saved my life. While I’m betting it’s playing a hand in my current suffering, and will most likely present unknown damage down the line, I would not be alive without it.  

I was right to see my beautiful mother. I don’t know how much time either of us has, as I’m still a few years from “free-and-clear.” For my remaining days, I’ll always recall her reaction upon recognizing me, crying out my name and holding me so very tight. As my wonderful friend, Irene, reminds me, Mom and I have an epic love.  

Mom taught me to love myself, too. And I do. Completely. That love extends unconditionally to my CRPS, as it’s a part of me as much as anything is.

39 years into my dance with this mercurial disease, I doubt I’ll ever get ahead of it as its mystery and misery run too deep. Still, I can love it completely without complete understanding.

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 20 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

The Overdose Crisis Is Misunderstood

By Roger Chriss, PNN Columnist

As U.S. opioid lawsuits wind down with multi billion dollar settlements, there are increasing calls for more measures to address the overdose crisis. The calls range from further tightening opioid prescribing practices to legalizing cannabis and other drugs, all in the hope of stemming the rising tide of addiction and overdoses.

The standard view of the crisis is of a simple system, described in mechanistic terms like supply and demand or “stock and flow.” There are a handful of policy levers, and pulling on a lever will hopefully create a proportional change in the crisis.

Obviously, this approach hasn’t worked. The U.S. has reduced opioid prescribing by over 40% and seen no improvements in overdoses. By contrast, Germany is the world’s second-largest user of prescription opioids and does not have an opioid crisis.

Many U.S. states have legalized cannabis, in part as a solution to the crisis. But in the wake of cannabis legalization there are even more overdose fatalities, to such an extent that cannabis is now viewed as possibly making the opioid crisis worse.

There are also claims that prohibition is the problem and that full drug legalization is the remedy. But the legal status of tobacco and alcohol can hardly be called a public health success.

Drug abuse does not occur in a social or technological vacuum. The development of the hypodermic syringe helped morphine and heroin become street drugs, the cigarette rolling machine enabled the modern tobacco disaster, and the advent of the vape pen and synthetic cannabinoids is causing new public health problems.

The Crisis Is Not an Epidemic

All of this suggests that the current understanding of the overdose crisis is mistaken. We’ve been treating the crisis as if it were an “epidemic” caused by a single pathogen, spread through one form of transmission, and treatable with one intervention. But the overdose crisis is not an epidemic in the strict sense of the word.

Instead, it is better to think of the world of drugs as resembling a tropical country with an abundance of parasites and pathogens. Such a country is beset with viral, bacterial and fungal threats coming from a vast variety of sources. With each season the threats shift, and over the years the threats change. But they are always there, and must always be addressed.

In such a country there is no one policy lever or regulatory dial that will control outcomes. Such a country is a highly complex nonlinear dynamical landscape that is very sensitive to small changes in fundamentally unpredictable ways. Moreover, the landscape will offer up novel threats and surprises far more frequently and less predictably than intuition would suggest.

As a result, even a small change in policy can easily have unexpected effects downstream, often unintended and maybe even tragic. For instance, public health policy meant to reign in prescribing for chronic pain has impacted cancer and palliative care. And tapering patients has resulted in more mental health crises and overdoses.

This conceptual difference means that simple solutions like fentanyl test strips or urine drug testing will not end the crisis. They may help on the margins, but to expect more is to misunderstand the nature of the crisis. And even if a bold stroke does help, it only does so briefly. And then the landscape offers new challenges that must be spotted swiftly and addressed adroitly.

The world of drugs can only be managed through comprehensive efforts at prevention, monitoring and treatment with support from local communities and society at large. Countries without an overdose crisis are notable not only for doing many things the U.S. does not, but also for pursuing their efforts consistently year after year.

The overdose crisis will keep evolving as more drugs are developed and delivered to an ever-changing world of drug use. Neither lawsuits nor legalization address the core of the crisis. In the U.S. there are too many charismatic crusaders brandishing simple solutions. But in public health there are very few heroes who understand the complex nature of the problem.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.   

Mission Creep and the CDC Opioid Guideline

By Roger Chriss, PNN Editor

It’s been over five years since the CDC released its opioid prescribing guideline for chronic pain. Now that the agency is looking at possible revisions, it’s worth taking a close look at what research is showing about the effects of the guideline.

First, let’s revisit the goals of the 2016 guideline:

“This guideline provides recommendations for primary care clinicians who are prescribing opioids for chronic pain outside of active cancer treatment, palliative care, and end-of-life care.

This guideline is intended to improve communication between clinicians and patients about the risks and benefits of opioid therapy for chronic pain, improve the safety and effectiveness of pain treatment, and reduce the risks associated with long-term opioid therapy, including opioid use disorder, overdose, and death.”

That’s not what has happened in practice. Instead, the CDC guideline has impacted pain management in both cancer and palliative settings, and has impeded access to care for people with chronic painful disorders.

Cancer and Palliative Care

Several major studies have appeared this year on the effects of the CDC guideline, all finding substantial and unexpected impacts on cancer and palliative care.

An Oregon State University study of over 2,600 hospital patients discharged to hospice care showed a decrease in opioid prescribing and an increase in the use of less powerful, non-opioid analgesics. As result, “some of those patients might have been undertreated for their pain compared to similar patients in prior years.”

Similarly, a study in The Oncologist looked at cancer patients with bone metastasis, and found that opioid prescribing fell significantly between 2011 and 2017. Researchers said their findings “raise concerns about potential unintended consequences related to population-level reduction in opioid prescribing.”

And a study in the journal Cancer found that in interviews with 26 patients with advanced cancer, the majority “experienced stigma about their opioid use for cancer pain management.” Patients also reported difficulties with pharmacies and insurance coverage of opioids.

Chronic Noncancer Pain Care

In chronic noncancer pain management, the CDC guideline has had mixed effects. A recent study in JAMA Network Open concluded that guideline-based opioid prescribing “has potential to improve pain management and reduce opioid-related harms,” but never addressed whether patients thought their pain care actually improved or was even adequate.  

The guideline has also had a chilling effect on some providers. A 2019 study in JAMA Network Open found that over 40% of primary care clinics in Michigan would not accept new patients being treated with opioids due to “decreased social desirability bias.”

The American Medical Association recently reported that many pharmacists have refused to fill legitimate opioid prescriptions, with some patients being told that they were not really in pain and others being subjected to “humiliating accusations that they were drug seekers.”

The AMA shared the experience of one doctor who came back from vacation to learn that he had been blacklisted by a major pharmacy chain that would no longer fill his prescriptions for controlled substances.

“When the CDC guidelines came down in 2016 basically saying we needed to take as many people as we could off opioids, I knew that my patients were in for a world of trouble,” said Aaron Newcomb, DO. “I was particularly concerned about my patients who were stable on low-dose opioid therapy for years. And my concerns have translated into an even worse reality for both me and my patients. Getting blacklisted by a national chain who had no clue about my practice was professionally wrong, but it also hurt my patients and my community.”

The goals of the CDC guideline were laudable. Improving patient outcomes and reducing public health risks are vital to the wellbeing of society. But at least so far, it’s hard to see the CDC guideline as having achieved any of its stated goals. Instead, we have guideline creep and a worsening overdose crisis.

The CDC alone should not be blamed for this outcome. States implemented laws and regulations, in some cases before the guideline was even released, that have contributed to these unfortunate shifts in clinical outcomes. The CDC even warned about misapplication of its guideline, though to little apparent effect.

There is clearly a lot of guideline creep at work. The impacts of the CDC guideline reach far beyond the use of opioids for chronic noncancer pain and are affecting patients in unintended ways, including those suffering from cancer and terminal illnesses or recovering from surgery. Patients and providers are hopeful the upcoming revision of the guideline will address these outcomes and improve pain care.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.  

Rare Disease Spotlight: Transverse Myelitis

By Barby Ingle, PNN Columnist  

This month as part of my series on rare diseases and conditions, we’ll look at transverse myelitis (TM), an inflammatory disease of the spinal cord. TM causes pain, muscle weakness, numbness, tingling, and bladder and bowel dysfunction. Severe cases can even result in sudden paralysis. 

Can you imagine being fine one minute and the next being paralyzed and losing control of your bowels?

The most famous person I have heard of having transverse myelitis is Allen Rucker, an author and comedy writer who developed TM spontaneously at the age of 51. Rucker wrote a memoir about becoming paralyzed due to TM: “The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life.”

As with many TM patients, Rucker was paralyzed from the waist down and has no control over his legs, bladder or bowel. He will need a wheelchair for the rest of his life. Despite these challenging conditions, Rucker continues to write and uses his communication skills to help others understand what it is like to live with a rare disease.

Transverse myelitis can occur at any age, but most often affects patients between the ages of 10-19 and 30-39. Some people do recover from TM, but the process can take months or even years. Most see improvement in their condition within the first 3 months after the initial attack, giving them a good idea of what they will face long-term.

There are many different causes of transverse myelitis, including viral, bacterial or fungal infections that attack the spinal cord. The inflammatory attack usually appears after recovery from an infection, such as chickenpox, herpes or shingles. TM can also be caused by immune system problems or myelin disorders, such as multiple sclerosis.

Patients who develop transverse myelitis can go through many treatments, including intravenous steroids for days to weeks at a time, plasma exchange therapy, antiviral medication, pain relievers, and drugs used to treat complications. There are some preventative medications to help keep inflammation down, avoid new flares and long-term complications.  

A patient can expect to undergo multiple MRIs of the spine as well as blood testing and possibly a spinal tap to check cerebrospinal fluid. They may also be started on physical therapy, occupational therapy and psychotherapy.

It can be difficult to know the course an individual with TM might take, but they fall into three areas: no or slight disability, moderate disability and severe disability.  The sooner that proper treatments begin for TM, the better the outcomes can be.

If you suspect you might have TM, keep track of when the symptoms started, what they are and how fast they progressed. Note if they presented through pain, tingling or other unusual sensations such as loss of bladder and bowel control or difficulty breathing. A provider will also want to know if you have recently traveled or had any infections or vaccinations.

If you are diagnosed with transverse myelitis, you can find support at the Siegel Rare Neuroimmune Association, a non-profit that advocates for people with TM and other neuroimmune disorders. They are a great resource for those who need assistance for research and daily living. Facebook also has several TM support groups, such as Transverse Myelitis Folks and Transverse Myelitis Society.

We are now halfway through our series on rare diseases and conditions. So far, I have covered transverse myelitis, Paget’s disease, Alexander disease, X-linked Hypophosphatemia, cauda equina syndrome, vulvodynia and Dupuytren's contracture. Next month I will look at Friedreich’s Ataxia.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

Being Judged for My Invisible Disability

By Victoria Reed, PNN Columnist

One of the things that irritate me is when people have complete disregard for disability parking spaces and park in them without a permit.

Recently, my family and I traveled to another state for a wedding. While we were there, we decided to check out a popular outdoor tourist attraction. Being that it was a weekend, the attraction was quite crowded. As we entered the parking lot, it was clear that we would either need to wait for a parking space or leave altogether. We decided to take our chances and wait.

Then I noticed a car parked in one of the disability spaces without the required permit. While the car had been ticketed by the National Park Service, I was a little annoyed because I have a disability placard (prescribed by a rheumatologist), and we could have parked in that space. Or someone else who is disabled could have.

My disability placard has been invaluable to me over the years, as I suffer from at least two of the “invisible” illnesses—rheumatoid arthritis and fibromyalgia. On days when my RA or fibromyalgia is at its worst, I utilize the placard and park in a space that would help minimize my walking distance. Sometimes both conditions work in-tandem to make my life miserable, causing joint pain and muscle pain/weakness.

I know I may not look disabled on some days. I try to put myself together before going out (no offense to those who are unable to), and I don’t use a wheelchair, scooter, cane or walker on a regular basis. I have used wheelchairs and electric scooters in the past while attending sprawling places like Universal Studios, zoos or other venues with my kids or where there would be significant walking involved.

Because I often don’t appear like a person who is disabled, I have received the “looks” from people when exiting my car after parking in a disabled parking space. I’ve also gotten nasty stares when I pull in and don’t hang my disability parking tag right away.

I wish that people would not be so judgmental, but sadly, some are! You never know what a person might be struggling with that’s not readily apparent. I always try to keep that in mind. If a person doesn’t use assistive devices, it doesn’t necessarily mean that they are not needed or mean that a person is completely well. 

Not only is the pain of RA and fibromyalgia a significant issue for me, so is the profound fatigue that accompanies both of these conditions. Some days, even if I’m not having active joint or muscle pain, the fatigue can be nearly incapacitating and make walking (or doing just about anything) difficult. In addition, the fatigue causes shortness of breath. People can’t usually see that.

Another thing that I’ve noticed in this Covid era is the decrease in disability parking spaces as retailers reassign those spaces for drive-up purchase pickup. I don’t have a problem with the drive-up spaces, as I often use them myself on more difficult days, but it’s a little concerning when disability parking spaces are reduced in favor of those. On better days, I like to park and go into stores because moving my body is good for me, regardless of the pain and/or fatigue I might be experiencing that day.

Hopefully, if Covid-19 ever completely goes away, retailers will add back those disability parking spaces that they took. We need those spaces!

It’s possible that someday I might need the regular use of a cane, walker or wheelchair, but until then, having an invisible illness and parking in a disability space will probably get more negative attention than it should. Yes, it bothers me when people judge me and assume that I don’t have a disability, but I will continue to keep my head up and go about my business.

As a chronic pain patient, I’ve learned to be tough, and I’ve had to develop a thick skin about be judged. Their problem is not my problem. However, my problem could someday become their problem! We are all just one accident, injury or illness away from possible disability. 

As for a parking space at that tourist attraction, we got one after about a 10 minute wait. I can’t complain too much about that!

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

A Matter of Interpretation

By Carol Levy, PNN Columnist

I recently read a post in one of the online chronic pain support groups. “Sue” had just left an appointment with her pain management doctor. She was enraged, so angry about the way the meeting had gone, that she went right to her computer and complained about it.  

“My doctor asked, ‘What do you think about my lowering the pain meds you're on?’” Sue wrote.

“How dare he reduce them!” was her response. Sue said the medications were helping her and the doctor had some nerve to ask. All these doctors want to do is hurt us, she wrote, and if it wasn't for the CDC and FDA, this wouldn’t be happening.

I read her post and was somewhat confounded by her anger. She did not include any information on how the meeting ended. Did he lower her dosage or the number of pills? I could see how upset that would make someone, especially if the drugs were helping.

But he didn't say, “I am going to lower the level of opiates I am giving you.” He said it in a way that seemed, to me, like he meant to open a discussion.

It reminded me of a difficult crossword puzzle I had just completed. It was so frustrating. I had it all done, but for one four-letter word. The clue was “wind.” All I could think of was “blow,” as in the wind blowing, but the letters didn’t fit.

There was a “C” for the first letter but I could not think of one word that started with “C” that fit the clue. No matter what letters I tried, I could not think of any other answer but “blow.”

Finally, I was able to figure out the word. The answer was “coil.”  

“Coil,” I thought. “Oh, for goodness’ sake.”

I was so obsessed with my one interpretation, it never occurred to me to consider another. It wasn't wind, as in the wind blows. It was wind, as in winding a clock or a windy road.

I think we do this often, and not just with medical people. They make a statement or ask a question that seems clear. But to the listener it carries a whole different meaning.

It’s harder when you're right there. Reading about it online made it easier for me to see it as the doctor asking, not demanding or insisting. In the heat of the moment, it may well sound like, “I'm not going to help you anymore. I'm stopping the drugs that have been helping you.”

There are crosswords and cross words. Sometimes we have to stop, take a deep breath, and instead of responding with angry or impulsive words, ask for an explanation.

“Are you asking me about lowering my meds or are you telling me you will?”

 If it’s the latter, it may well be the time to be upset. If it’s the former, it’s time to open the discussion.

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.”

Ending the War on Drugs Probably Won’t Help Pain Patients

By Roger Chriss, PNN Columnist

America’s war on drugs has been running for half a century and calls to bring it to an end are increasing. Lawmakers and public health experts are questioning federal and state policies that criminalize drug use, while the public generally supports less punitive measures to address drug abuse and addiction.

"The war on drugs must end,” said a recent editorial in The Lancet. “Decriminalisation of personal drug use, coupled with increased resources for treatment and harm reduction, alongside wider initiatives to reduce poverty, and improve access to health care, could transform the lives of those affected."

But ending the war on drugs probably won’t help people with chronic painful conditions. That’s because decriminalization of recreational drugs is not necessarily associated with full legalization – as is the case with marijuana -- while legalization of recreational drugs is separate from medical care with pharmaceutical prescriptions.

The debate about how to end the drug war is largely ideological at this point. In the new issue of The American Journal of Ethics, Carl Hart, PhD, author of the book “Drug Use for Grown Ups,” writes with colleagues that laws criminalizing drug use are “rooted in explicit racism.”

"We call for the immediate decriminalization of all so-called recreational drugs and, ultimately, for their timely and appropriate legal regulation," they wrote.

But bioethicist Travis Rieder, PhD, author of the book “In Pain” about his experience with opioid-based pain management, wrote in the same journal that “ending the war on drugs does not require legalization, and the good of racial justice and harm reduction can be achieved without legalization.”

Yet another view comes from Stanford psychiatrist and PROP board member Anna Lembke, MD, who wrote in the Journal of Studies on Alcohol and Drugs that creating a “safe supply” of drugs by legalizing the non-medical use of prescription medication would be a mistake.

“The expanded use of controlled prescription drugs should not occur in the absence of reliable evidence to support it, lest we find ourselves contending with a worse drug crisis than the one we’re already in. No supply of potent, addictive, lethal drugs is ‘safe’ without guarding against misuse, diversion, addiction, and death,” said Lembke.

The Lancet points to Portugal as an example that other countries should follow. But contrary to common belief, Portugal has not legalized drugs. In Portugal, drug possession of no more than a ten-day supply is an administrative offense handled by so-called dissuasion commissions.

Portugal has not even legalized recreational cannabis. Medical cannabis is legal in Portugal, but only when prescribed by a physician and dispensed by a pharmacy if conventional medical treatments have failed. Personal cultivation of cannabis remains against the law.

Further, neither decriminalization nor legalization necessarily improves racial and social justice. For instance, the University of Washington’s Alcohol & Drug Abuse Institute reports that the legalization of cannabis in Washington state in 2012 has had no impact on reducing racial bias in policing and other disparities in the criminal justice system.

Broad drug decriminalization or legalization would likely have little impact on pain management. Healthcare professionals routinely prescribe medications that are illegal outside of clinical medicine, after weighing the risks and benefits for each patient. Patients are often monitored via pain contracts and drug testing, with some agreements even disallowing cannabis and restricting alcohol use for patients taking medications like opioids or benzodiazepines.

Physicians and pharmacies are under increasing scrutiny from law enforcement, insurers and regulators in the hope of curbing drug abuse. If decriminalization or legalization of drugs leads to more abuse, addiction and overdose, then the scrutiny could increase. So in an unexpected way, an end to the war on drugs could have negative impacts on pharmacological pain management.
 
Supporting an end to the war on drugs is a right and just action. But it would be a mistake to assume that an end to that war will necessarily bring a positive change to pain management. For that, it would be better to support physician autonomy and greatly expanded clinical research into pain management.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.  

The ‘Crazy’ Healing Power of Music

By Cynthia Toussaint, PNN Columnist

As a young person, I don’t remember a time when I didn’t live and breathe music.

In grade school, I couldn’t wait to get to the multi-purpose room for two reasons: chorus to sing my heart out and band to play my beloved flute. I pestered my mother relentlessly to let me start piano lessons before age seven (a family rule) because I loved the way it sounded and couldn’t wait to make the notes on the page come to life.

Then there was my favorite. When Mom brought home the record “Funny Girl”, I knew that I’d never stop singing. It was pure joy, an extension of myself. Indeed, the best part of Christmas each year was receiving a new Barbra Streisand album, a treasure that I cherished to the point of wearing out the grooves.

I grew to be a nonstop, never-gonna-quit singer, dancer and actor. It’s what I lived for, what I was born to do. Nothing was going to stop me – and in the end, nothing really did. While we don’t get to live our dreams with Complex Regional Pain Syndrome, we can hold onto our passions in a different way. And for wellness alone, we ought to.

People gasp when they hear that I was unable to speak for five years due to CRPS, because that’s an unthinkable symptom caused by an unimaginable disease. But those same people overlook the fact that CRPS made me unable to sing for 15 years, like that was something disposable.

When I couldn’t sing, I didn’t get to be Cynthia. Something fundamental and basic was stripped away from me. And with that went my expression and joy.

Lately I’m hearing lots about the healing powers of expressive therapy and how creative pursuits like dancing, painting, writing and acting can unleash “feel-good” hormones (like endorphins and oxytocin) that lessen pain, depression and anxiety. I’ve also come to understand that the part of the brain that drives creativity distracts from the part that controls pain. That’s certainly been the case with me.

Cooler still, partaking in one expressive therapy can lead to the recovery of another. It was soon after writing my memoir that I could feel my body getting ready to sing again. Regaining my voice was nothing short of a miracle and, to this day, I don’t really understand how it happened. My best guess is that through the narrative therapy process I purged negative feelings and wounds, opening a healing space. But in the end, does it matter?

Now that I’ve regained my strong vocal chords, I take every opportunity to express this joy. I sing with bands, in choirs, duets with musicians and a cappella harmony trios. I also love to record – and just finished my second CD titled Crazy, which I dedicated to “women in pain who know they’re not.” 

This album was a real labor of love as I took my time (in fact, seven years!) to record it. The obstacles throughout were many – multiple CRPS flares, a broken elbow that went untreated and undiagnosed for a year, a lupus infusion drug that nearly did me in, and, oh yeah, breast cancer.

For this album, I delighted in choosing songs that took me down memory lane, songs that I loved while growing up and that speak differently to me post-illness. I had to quickly wrap up my last two recordings in December 2019 as the dark chemo clouds loomed.

Then, after becoming an unlikely cancer survivor, I eagerly designed my cover. I hadn’t been on a beach for 35 years and was bald, but that didn’t stop me from being a mermaid, leaning against my fears while having them bolster me to look toward a bright future. 

I want Crazy to bring joy and laughter to those who suffer. I’m hoping this near-and-dear project will inspire us to turn our backs on fear and “impossibles,” reignite our passions and courageously move on.

I still hear from women in pain who are stuck in the elusive search for a cure in hopes of recapturing their past. Here’s the thing – we don’t get to go back.

Our choice is to stay stuck and miserable – or let the “cure” delusion go and partake in things that bring us healing and wholeness. I’m certain that one of the tickets forward is expressive therapy. When we stir our soulful passions, wellness follows.

As a former “triple threat” performer, it’s the expressive arts that continue to inspire me to heal. For you it might be a way different sort of passion. Perhaps nature, animal welfare or the pursuit of justice is your buzz. Bottom line, we all need to find ways to differently recapture what clicks our heels and makes the hair on the back of our necks stand straight. 

Being a long-time member of the Kingdom of the Sick doesn’t exclude us from the pursuit of joy. I know it’s easier said than done when wrangling with the likes of CRPS, migraine or lupus. But it’s essential to living a full, authentic life, one worth seeing the glow of a spectacular sunset.            

I don’t think there’s anything crazy about that.                     

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 nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Click here to download or order her Crazy CD.

How Chronic Pain Can Lead to Autoimmunity Problems

By Forest Tennant, PNN Columnist

Every chronic pain patient must know and understand autoimmunity and how to combat it. Research on chronic pain has unequivocally determined that the chronic inflammation and tissue destruction caused by a painful disease or injury will produce autoimmunity.

Autoimmunity is a biologic phenomenon in which certain antibodies in the blood -- called autoantibodies -- turn against the body and attack one’s own tissues. Autoantibody means “self-attack.” This is in stark contrast to “immunity” which means antibodies only attack an invading virus, bacteria, poison or contaminant to protect the body.

Chronic pain that causes inflammation and tissue degeneration generates cellular destruction that can shed tissue particles into the blood stream. These tissue particles are considered foreign and unwanted by the body’s immune system, so it makes autoantibodies against them. Unfortunately, these autoantibodies may then attack normal tissue, giving the patient unexpected symptoms and more pain.

The symptoms and sequelae of autoimmunity can be mysterious and overwhelming. Such disorders as traumatic brain injury, Ehlers-Danlos Syndrome, adhesive arachnoiditis, post-viral, and stroke are particularly prone to the development of autoimmunity.

Although antibodies may attack any tissue in the body, autoantibodies seem to attack the soft tissues such as membranes around organs, ligaments, cartilage, small nerves and intervertebral discs. Another common target is the body’s natural immune protection system, including lymph nodes, thymus gland, mast cells and spleen.

The complications of autoimmunity usually begin without warning. Common clinical manifestations of autoimmunity and the presence of autoantibodies include allergies, skin rash, fibromyalgia, psoriasis, thyroiditis, carpal tunnel syndrome, and arthritis of the joints including the temporal mandibular, elbow and hand joints.

Serious painful and life-threatening autoimmune conditions may also occur, which include the kidney (glomerulonephritis), liver (hepatitis), nerves (neuropathy), spinal canal (arachnoiditis), adrenal gland and the pituitary gland. We now believe that autoimmunity, along with excess neuroelectric stimulation, to be the cause of Intractable Pain Syndrome (IPS).

How To Tell If You Have Autoimmunity

Every chronic pain patient needs to do a self-assessment to determine if their basic pain problem has caused autoimmunity. A failure to control autoimmunity will likely result in progressive complications, misery and probably an early death. As with most other medical conditions, the earlier the recognition, the better the control, suppression and outcome.

Patients should review the following list of some common autoimmune symptoms or conditions. If you have two or more, an assumption can be made that you have autoimmunity and must take actions to control and suppress it:

• Joint pain

• Carpal tunnel

• Histamine episodes or mast cell stimulation

• Cold hands (Raynaud’s)

• Allergies

• Mild recurring fever

• Neuropathy

• Medications stop working

• Irritable Bowel Syndrome (IBS)

• Food or Medication Sensitivity

• Hashimotos Thyroiditis

• Brain Fog

• Fibromyalgia

• Diarrhea, gastric upset, heartburn

• Periodic flushing and itching

• Herniated disc

• Constipation

• Psoriasis

• Exhaustion and Weakness

If you have two or more of these conditions, a laboratory blood test can help confirm it. Autoimmunity and its close association with chronic inflammation, immune suppression and allergy will almost always result in elevations of one or more of the following blood tests:

• C-reactive protein (CRP)

• Lymphocytes or eosinophiles

• Anti-nuclear antibody (ANA)

• Erythrocyte sedimentation rate (ESR)

• Interleukins-cytokines       

• Thyroid peroxidase antibodies (TPO)

• ASO Titer

• Tumor necrosis factor

Automimmunity may also result in decreased immunoglobulins and an altered albumin-globulin ratio.

At this time there is no specific, published treatment for chronic pain-induced autoimmunity. Based on our early investigations, we recommend patients take vitamins, supplements, low dose corticosteroids, low dose naltrexone (LDN) and hormone therapy to control and suppress autoimmunity. Further details can be found here.  

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up here.

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

States Need to Protect Pain Patients From Uncaring Pharmacists

By Leslie Bythewood, Guest Columnist

The unthinkable just happened again.

A Walgreens pharmacist got away with refusing to fill my prescriptions. It’s the second time that has happened to me at a retail chain pharmacy; the first time was at a CVS pharmacy.

The Walgreens pharmacy manager called and said she would not be able to fill the two prescriptions my board-certified physician had submitted electronically; despite the fact my health insurance had given prior approval for the medications and the pharmacy has been filling them month after month since December 2020.

Contrary to my physician’s best judgment and clinical decision making, this new head pharmacist suddenly decides she cannot fill the prescriptions because:

• The prescriptions are not in keeping with good-faith dispensing

• The prescriptions are not appropriate or safe to dispense

• The pharmacy’s therapeutics committee red-flagged the prescriptions as being too high a dose

• North Carolina limits the number of tablets that can be dispensed each month

• Filling the prescriptions goes against the pharmacist’s professional judgment

When I realized that my pharmacist would not fill the prescriptions and refused to even discuss the matter with my doctor, I wasted no time filing an electronic complaint with the North Carolina Board of Pharmacy, hoping for some recourse short of having to get the prescriptions filled at another pharmacy.

But little did I know about a North Carolina Board of Pharmacy rule entitled “Exercise of Professional Judgment in Filling Prescriptions.” That esoteric rule says a pharmacist “shall have a right to refuse to fill or refill a prescription order if doing so would be contrary to his or her professional judgment.”

It also states that a pharmacist “shall not fill or refill a prescription order if, in the exercise of professional judgement, there is or reasonably may be a question regarding the order’s accuracy, validity, authenticity, or safety for the patient.”

Federal law also gives pharmacists a “corresponding responsibility” not to fill a prescription for controlled substances if they believe it is “not in the usual course of professional treatment.”

Basically, the Walgreens pharmacist had the audacity to call into question the validity of my prescriptions being for a legitimate medical purpose, which not only is an insult to my physician, but second-guesses and overrides his many years of medical judgment and authority.

Worse yet, the North Carolina Board of Pharmacy agent I spoke with said that “refusing to fill the doctor’s prescriptions is not a violation of the Pharmacy Practice Act.” She went on to say the board cannot force the pharmacist to fill a prescription if the pharmacist is not comfortable doing so.

Bottom line: In North Carolina and many other states, the patient and doctor have no recourse and no avenues for appeal if a pharmacist refuses to fill a prescription. The only path forward is to have the doctor submit the prescriptions electronically to another pharmacy.

What I find so unconscionable about this whole ordeal is that it doesn’t seem to matter one iota to the uncaring pharmacist that I am a certified pain patient and that my doctor’s prescriptions are entirely legitimate and medically necessary, as has been documented in my medical records.

Nor did it matter that I’ve been on the same opioid strength since December 2020 without any adverse side effects, or that I am highly tolerant of my medications (a physiologic state that does not equate with psychological addiction) and have no history of overdose, substance abuse disorder, misuse or addiction. 

The pharmacist’s ability to get away with overpowering my doctor with unsound, medically unsafe arguments is exactly why we need to enact laws at both the state and federal level to protect pain patients from this type of abuse.

Leslie Bythewood is a freelance writer who lives in North Carolina. Leslie has intractable cranial pain syndrome caused by idiopathic severe chronic migraines and clusters.

PNN invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

Finding Inner Peace and Justice

By Mia Maysack, PNN Columnist

The vast majority of people who live with chronic pain and illness are blameless. It’s not our fault that we’re sick.  

I, for example, was a kid when an ear infection that led to a lifelong traumatic brain injury.  An innocent student and young career person who constantly missed class and work because of chronic migraines. Lack of proper care only further complicated matters.  

My health conditions were my biggest bullies; repeatedly huffing, puffing and blowing down any chance I had for normalcy or life without them. I often felt as though I were a prisoner within my own body. There were moments that I almost didn't make it through.

I'd be lying if I didn't confide some days still push me to my limits. But I’ve learned to pace myself and honor my capabilities one breath at a time.

Ask yourself this question: If you had to name all the things in life that you love, how long would it take for you to name yourself?  

Learning self-love is probably one of the biggest aspects of my self-care plan. But even deeper than self-love is a new concept I am exploring, called Inner Justice. 

When I feel well enough, I participate in a local campaign I began called “Honk4Justice.” A sign is held at busy intersections, inviting drivers to participate in the civil rights movement by simply honking. 

Often the question is asked:  "Justice for who?"

There are many answers.  Justice is waiting for proper verdicts and sentencing for killers. Justice is the same treatment for others that I'd hope to receive for myself. Justice is an equal amount of justice from one person to the next. Justice for the inner climate that makes up our individual perceptions of reality. 

Something that became very apparent early on in my journey with medical justice is that all pain and all hurt matters. Each of us, as part of this human experience, suffer somehow. Something has tested, caused inconvenience, broken our hearts or inflicted trauma in our lives.   

Instead of fixating on what separates us, we should focus on the commonalities to be found in the human experience. That includes physical and emotional pain. 

Whether it’s enduring systemic oppression or maltreatment, everything in existence is valid, causes a ripple effect and is connected. This means any one of us is only as strong as the weakest. That is why addressing our own personal judgement, ego, issues, privilege and wounds is paramount to move forward with individual healing and wellness.  

The beginning of this process for me meant developing a two-way relationship with my symptoms. I learned to approach myself as I would a dear friend, because ultimately the longest standing fellowship we’ll ever have is with ourselves. I've learned to navigate uncertainty, embrace the grand master plan, and surrender to the present as it comes. 

Living with a traumatized nervous system that constantly feels threatened and cultivating a sense of safety can seem like an impossible task, but it provides an opportunity for self-compassion. Once we’ve internalized that,  it becomes an available source of energy to pull from for understanding, accepting and having empathy for others. 

For as many more days as we have left, let us be open to learn, listen, teach and try for ourselves, each other and all those still to come.

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.