Genetic Variations Involved in a Third of CRPS Cases

By Pat Anson, PNN Editor

Chronic Regional Pain Syndrome (CRPS) is one of the worst and most baffling of pain conditions. It usually starts after an injury to an arm or leg, with the skin in the affected area becoming warm, red and painful to touch. Most cases are mild and people recover after a few months, but in rare cases the condition grows worse, resulting in intense nerve pain that can spread and last for years.

Why do some people develop CRPS, while others get better? A small new study in the UK suggests that a genetic variant may be responsible for about a third of CRPS cases.

Researchers at the University of Cambridge took blood samples from 84 patients enrolled in the CRPS-UK Registry to look for variations in certain genes known as single nucleotide polymorphisms, or SNPs for short. Their DNA was compared to a control group of patients with chronic pain from fibromyalgia and low back pain.

Their findings, recently published in the Journal of Medical Genetics, show that an SNP in 4 genes (ANO10, P2RX7, PRKAG1 and SLC12A9) was “more common than expected” in patients with CRPS for at least a year (CRPS-1) than it was in the fibromyalgia/back pain group.

In all, 25 of the 84 patients (30%) with CRPS-1 had the variations in at least 1 of the 4 genes. None of the variations was found in the control group.

Interestingly, men with CRPS were more likely to have the variations (57%) than women (24%), although the sample sizes are so small the discrepancy will need to be confirmed in a larger study. In real life, women are more likely to have CRPS than men.

“This raises the possibility of different mechanisms of disease in males and females in CRPS-1 and that therapeutic responses may also be influenced by sex,” wrote lead author C. Geoffrey Woods, a clinical geneticist at the Cambridge Institute for Medical Research.  “Our data support an underlying genetic predisposition to CRPS-1 in up to a third of cases, with this effect being most prominent in males.”

There may be a biological explanation for the findings, because the ANO10, P2RX7and SLC12A9 genes are found in immune cells of the peripheral nervous system, which becomes inflamed by CRPS.

All 4 genes are also expressed in macrophages — a type of white blood cell involved in the immune response of healthy people. This suggests that variations in those 4 genes may be what triggers CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).

CRPS/RSD is difficult to treat and there is no known cure. Some patients have found relief through Scrambler therapy and ketamine infusions.

Pain Patients Get ‘Substantial Relief’ from Scrambler Therapy

By Pat Anson, PNN Editor

A little-known therapy for Complex Regional Pain Syndrome (CRPS) and other painful neuropathic conditions is finally getting some attention from a prominent medical journal.

“Scrambler therapy is the most exciting development I have seen in years — it’s effective, it’s noninvasive, it reduces opioid use substantially and it can be permanent,´ says Thomas Smith, MD, a professor of oncology at the Johns Hopkins University School of Medicine and co-author of a review recently published in The New England Journal of Medicine.

Scrambler therapy – also known as Calmare pain therapy -- sends mild electric signals through the skin via electrodes placed near areas where chronic nerve pain is felt. Similar to transcutaneous electrical nerve stimulation (TENS), the idea is to “scramble” pain signals being sent to the brain and reduce central sensitization.

Some patients get immediate relief after a 30-minute scrambler session, but most will have to undergo a series of treatments on successive days to have a prolonged analgesic effect. Smith says many patients “get really substantial relief.”

“The duration of relief usually increases with each day of treatment, and in contrast to TENS, analgesic effects have been reported to last for weeks, months, or even years after a treatment course,” wrote Smith, who reviewed 381 clinical trials of TENS and scrambler therapy with his co-author.

“The major limitation with respect to our understanding of electroanalgesia is the small number of well-designed, large, randomized, sham-controlled clinical trials of TENS and scrambler therapy.”

In one small study, patients getting scrambler therapy had a 91% reduction in pain and reduced their use of opioids and other pain relievers by 75 percent.

“If you can block the ascending pain impulses and enhance the inhibitory system, you can potentially reset the brain so it doesn’t feel chronic pain nearly as badly,” Smith says. “It’s like pressing Control-Alt-Delete about a billion times.”

Scrambler therapy seems to be most effective in patients with CRPS or those who develop neuropathic pain after chemotherapy. It’s also been used to treat fibromyalgia, shingles, diabetic neuropathy and post-operative pain.

Amanda Greening was bedridden by CRPS at the young age of 20, but was able to walk again after several sessions of scrambler therapy. Amanda’s father wrote a column for PNN on her recovery. So did a local TV station:

Although scrambler therapy was approved by the FDA in 2009 for patients with chronic or neuropathic pain, the procedure is still not widely available or covered by insurance. Only one company makes the scrambler device, which costs about $65,000, and practitioners have to undergo several days of training to use it. Treatments cost about $300 per session.

Like other pain treatments, scrambler therapy doesn’t work for everyone. About 10 to 20% of  patients have no analgesic response -- a risk many would be willing to take, if it means freeing themselves from a lifetime of pain.

‘Take Care of Maya’: The High Cost of a Mother’s Love

By Cynthia Toussaint, PNN Columnist

Netflix’s top-notch documentary, Take Care of Maya, was excruciatingly painful for me to watch because it hit so close to home. I related on many levels: the disease, maltreatment from healthcare professionals, being labeled crazy, the family breakdown, and the pursuit of justice. But the dagger to my heart was the price paid for a mother’s love.

Like me, the protagonist, Maya Kowalski, has Complex Regional Pain Syndrome (CRPS), but the over-riding message of the film is about something far more insidious. It lays out the abusive extremes some health and social care systems take to make a buck at the cost of patients and their families. Sometimes that price can be unimaginable.

In Maya’s case, her parents were falsely accused of child abuse, specifically making their daughter ill for their own gain, a disorder known as Munchausen by Proxy. This misguided allegation led to Maya being kidnapped by hospital administrators, who then barred her from seeing her family, all while the 10-year-old’s physical and emotional pain became increasingly worse.

It was horrifying to watch Maya’s family unravel under the strain of this prolonged nightmare, in particular her bold and unflinching mother Beata’s relentless confrontations with the powers that be.

After multiple failed attempts to reverse matters in the courts, Beata, the focus of the abuse allegations and the target of the hospital’s ire (***spoiler alert***), became increasingly despondent to the point that she hanged herself to give her daughter the best chance of getting back home.

‘They’re Killing My Daughter’

I’m guessing that many who watched the documentary found its facts too fantastic to be true – and there was a time when I might have agreed with them. But I’ve lived too much of this story to question it now.

In my early 20’s, when it was clear that my still unnamed disease wasn’t going away, my mother became progressively distraught over watching my life slip down the rabbit hole. It’s fair to say my recovery came to be her over-riding obsession.

Mom wrote 200+ searing letters, sometimes demanding, at other times begging my HMO to diagnose and treat me. She spent large swaths of those years on the phone in desperate attempts to get me, as she coined them, “no-care” appointments, all in the hope that a compassionate physician or administrator would at last hear her pleas and change my course.

My poor mother became more and more unglued and unwell from the abuse, aimed first at me and then toward her, from this evil empire. She developed life-threatening heart problems and her legs, addled by aching varicose veins, went from bad to worse from constantly lifting me. Perhaps my most distressing memory of those dark days was when I’d hear her full-volume moans emanating from out-of-control sadness.  

One day after my HMO dropped the ball on an appointment we’d driven miles to attend, Mom snapped with rage. With super human strength, she hoisted my 50-pound wheelchair in the parking lot and smashed it into her car. As I cried in fear, she repeatedly bashed away.

“They don’t care about my daughter!” she screamed. “She’s dying! They’re killing my daughter!”

During this time, I was terrified for my mother’s life. Though it never crossed my mind she would take her own, I was hounded incessantly with the thought that she would succumb to a stroke or heart attack.

Maya’s mother made the ultimate sacrifice by taking her own life to save her daughter’s. Some might say that was tragically misguided, but I’m certain Beata’s intentions were true and real. My mother said to me on more occasions than I care to remember, “If cutting off my arm would make you well, I’d do it.” I never doubted her.

After fighting my HMO for nearly a decade with no tangible results, not even a diagnosis, my mom pulled up stakes, but in a different way than Beata. Mom moved to New York to pursue her long-delayed acting career. When I confronted her about feeling abandoned, she explained her reasoning. “Maybe if I go, you’ll get better by doing more for yourself,” she told me. It didn’t have to be logical.

In Beata and my mother’s desperation to somehow, someway fix impossibly tragic situations for their daughters, both made questionable choices out of love. It’s true, the path to hell is paved with good intentions, especially where chaos and heartbreak intersect.

Like Maya, I couldn’t just fold tent and walk away from the institution that did me wrong. Sure, I wanted justice for me, but also for my mom. I became a spokesperson and a whistle-blower for HMO reform in California, hell bent on exposing all of their atrocities. I did get a number of licks in, multiple high-profile media stories that helped change public opinion, which helped pave the way to sweeping legislative reform.

In retrospect, something I think of quite a bit these days, the cost was too high. I’m harassed by this entity to this day and they were successful in killing much of my most important work. In short, the fallout from my justice-seeking made me sicker and sadder over the decades, taking away more than it gave.

When I see Maya seeking justice in her mother’s name, I have great respect for her, but also concern. This young woman is now in remission and, going forward, my prayer is that she puts her health front and center. After poignantly telling her story on a world stage and prevailing in the courts (which I believe will mercifully happen soon), I hope Maya will step away with the knowledge that she’s done enough, and never looks back. It’s time to save herself.     

It’s also time to grieve, maybe more than anything, the loss of a mother’s love.    

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.”

Painfully Stepping Over the Line

By Cynthia Toussaint, PNN Columnist

For decades, people have described me as indefatigable, super-human strong and the ultimate survivor. Or the one filled with surprises and miracles. Well-intended compliments that have moved me and, during dark times, spurred me on. But now these tributes vex me because I don’t know if I can live up to them.

Maybe I’m just tired of fighting the impossible.

My latest cascade of battles began in 2019, after getting a breast cancer diagnosis and not knowing whether I’d choose treatment due to Complex Regional Pain Syndrome (CRPS). While pushing back on my oncologist’s recommendations, she pulled out all stops in an effort to convince me to fight for my life. She asked, “Can you imagine yourself not doing treatment and regretting it?”

I furrowed my brow and replied, “I’m more concerned that I’ll do treatment and regret living with the damage afterward.”

I was terrified that cancer care, in all its cutting, burning and poisoning glory, would ignite a red-hot mess of CRPS, sending me back to my bedridden days and zeroing out any quality of life I’d clawed back over the decades.

I drew the line. To move forward with treatment, I had to have a life worth living at the other end.

I chose to only do chemo and miraculously lucked out, cancer and pain-wise. When my cancer returned a year and a half later, it appeared I’d skated by again, until I didn’t. While the immunotherapy knocked the tumor out in short order, little did I know that with each infusion my immune system was amping up to push me over the line, but in a way far worse than I could have imagined.

By mid-March, my lap swimming, my go-to for health and freedom, became a painful hell. I couldn’t push off during flip-turns, one leg barely kicked and my neck screamed in agony each time I turned for a breath. I had no choice but to quit.

Soon walking was near impossible: slow, labored and almost shuffling. My knees swelled to the point they wouldn’t allow me to get up from a chair or couch. Frantically, my partner, John, got a raised seat so I could use the toilet. I started losing weight because the pain in my jaw made eating torturous.

Screaming often through the days and nights, I felt hatchets and icepicks throughout my body, grinding glass replaced my joints. When I could sleep, I woke often with fever and chills.                   

After scads of labs, internet research and clinical assessments, I’ve learned that I’m the proud owner of a brand, spankin’ new disease: Reactive Inflammatory Arthritis. I’m now living the experience I feared most, the place where I told myself I couldn’t, wouldn’t go. I’ve stepped over the line, terrified it’s a one way ticket.      

To dampen the inflammation and stabbing pain, hell, just to get me moving, my doctors put me on low-dose naltrexone and prednisone (the latter I swore up and down I’d never revisit.) For that blessed comfort, the cost is mighty. I’m zonked out and joyless while insomnia, constant dizziness and the constipation-diarrhea seesaw zap my quality of life.

With the drug relief, I’m mercifully dipping into a warm therapy pool where I can move, walk and swim some, offering vague hope of recovery. But I see the troubled look in the eyes of my Y friends, the wish that their feisty, frothy friend would reemerge. I can’t help but wonder if they’re playing witness to my slow down and out.         

In my darkest hours, when the arthritic pain makes me question whether I can survive another five minutes, I rock with anger that my tumor’s gone. That was my ticket out. The jokes on me as I live the cancer-free dream. Cue the laugh track. I’m not living and free is nowhere to be found.

When my better angels reappear, I remember why I fought twice, tooth and nail, to see another day. I want to live, to love, and to see the beauty all around me. I want to continue to be a force for good.

Ahh, but that pesky line. I’ve got to get back over it. Or do I? When I got sick 40 years ago, I swore I wouldn’t live on if I couldn’t continue my showbiz career. I was utterly convinced life wouldn’t be worth a damn without it. Yet, here I am, staring down that line again. Maybe, MAYBE there’s some wiggle room one more time.     

I imagine all of us who’ve lived with high-impact pain over the long haul have drawn that line. Then later, took out an eraser and drew it again, renegotiating the terms. At another time, when we drop below, we grasp and beg as we slowly, savagely eek back over. Or not. It’s ever changing, tied to the whims of fate and will.

Maybe the line just gives us an illusion of control. Maybe it’s a frenemy, something that keeps us company whether we’re above or below.

This I know. I’m scared and tired while I stare down my new mountain. I’ve lost cherished independence, that may or may not return, requiring John to be on call at all times. We’re two generations removed since the last time I had to fudge the line, and what if my cancer returns? How many more comebacks can I stage?

Last night, I spewed anger with a close girlfriend, bristling that my impossibles never quell, despite being a good person. At that moment, something awoke in me. I was surprised to feel that old spark in my belly – which has me thinking that anger is serving me well right now.

It was so powerful when Heather commented, “I wouldn’t bet against you.”

I’ve learned that the best way to predict the future is by looking at the past. By that yardstick, I’ve always toed the line, come hell or high water. But like every other climb, I’ll decide what’s good enough, in my time, in my space.

Maybe I can live with 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 and 19 comorbidities 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.”

A Window Into the Impossible: A Pain-Free Life

By Cynthia Toussaint, PNN Columnist

I recently experienced the miracle of living pain-free for a while, after 40 years of body-wide Complex Regional Pain Syndrome. I was astonished by what it felt like and what I learned about myself.   

In November, I had a serious cancer treatment complication, one that landed me in the hospital and forced me to suspend care. After stabilizing and returning home, I had to taper down from a course of high-dose prednisone, a corticosteroid, over eight weeks.     

The multitude of prednisone side effects were worse than I imagine hell to be, save one: my pain was gone. Okay, not gone-gone, but so damn near I forgot about it.

Yeah, you read that right. After decades of burning, radiating, life-upending, soul-crushing, never-ending, can’t-do-another-moment pain, it just wasn’t a thing anymore.     

Over the last decade or so, my life partner, John, has asked me on occasion, “What would you do if your pain just went away?”

That question pissed me off because pain has robbed me of my dreams. How dare it go away now, I would think, after destroying my life! Ebbing into my later years, I knew it was too late to reclaim what was gone. I decided it would hurt too damn much psychologically to lose my physical pain.  

I was stone-cold wrong. When the prednisone kicked in, it was nothing short of heavenly bliss to be without my constant agony. At first, it felt as though much of my lower body had been amputated, but in a good way. Poof, like magic, the tonnage of pain and heaviness were gone. Also, to my surprise, I had zero emotional fall-out.

I marveled in the miracle of standing, as this ability had been absent for many decades. I’ve spent countless hours, weeks and years staring at people in public, trying to figure out how they could stand and shift their weight without apparent torment or thought. After becoming a “shifter” myself while on prednisone, I had a clear, three-word answer: It doesn’t hurt.   

Not using my wheelchair was a trip because people stopped treating me like a child. Rather than literally gazing down with pity, they looked me straight on, eye level and all. They even asked me questions about myself, rather than disregarding the invalid while turning to John. That, in itself, was a game-changing reality, and I started to smell the sweet possibility of independence again.       

Every moment without pain was a miracle, blowing open my mind with new ideas and long packed away possibilities. For the first time, I seriously thought researchers would someday find a cure for CRPS. I mean, if they could switch much of my pain off virtually overnight, clearly science was on the edge of making this stick permanently.

If only.

Here’s the other side of the story I alluded to earlier. When my pain went away, it cruelly coincided with the most torturous time of my life. The price of high-dose prednisone was, for me, an existence worse than pain. I was in and out of psychosis, sleeping three to four hours a night with an irregular, pounding heartbeat, and a thousand other little shop of horrors. With that onslaught, my spirit broke. Add the perils of aggressive cancer and the fallout of a serious treatment complication, and the torture was just too much.

On New Year’s Eve, my 62nd birthday, I told God that if it was my time, I was ready to go. I didn’t think Cynthia was ever going to come back. “Please, please make my suffering stop,” I begged.

To my surprise, and most I know, I clawed my way back after completely tapering off the prednisone. My new miracle has me living in gratitude, despite my old pain rushing back with a vengeance, leaving me with a GOAT of a pain flare. I writhe through much of my days and nights, feeling the burning hatchet sear my joints. But, dammit, I’m me again, and, like all flares, this too shall pass.      

Thankfully, I’m strong enough to be back on chemo as the benefits of self-care are once again paying off in spades. Adding to the good news, my recent CT/PET scan came out negative. “No Evidence of Disease” to be precise! These days when I pray, I don’t ask God to take me, but rather to keep me on this glorious earth.             

I got a glimpse into the other side, the miracle of being pain-free. But the cost of losing me was too high. Heck, science tells me I’d no longer care about my pain if I got a lobotomy. No thanks.

I’m back to not wasting precious energy speculating about a possible cure. If it comes, fantastic, but I have no expectations, and accept and embrace the reality of what is right now.

Though my pain is often wretched and dark, I long ago embraced it as part of my authentic self. And to stay true to one’s self, there sometimes comes a great cost.

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.”

My Story: 30 Years of Pain

By Rochelle Odell

Sad to say, but I am entering my 30th year battling the monster called Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). After three decades, I just call it by both names: RSD/CRPS

It was bad enough when the disease was triggered when I was 46. I had made a career change from aerospace to nursing, and moved out of California to take a new job not too far above minimum wage as a Critical Care Tech. After being a volunteer EMT, it was my dream to become an RN or trauma nurse.  So, I trekked to Georgia to start reaching for my dream.

My left heel was most unhappy with all the walking. I had a lifetime award for medical due to a work comp knee injury, which caused an abnormal gait and the heel pain.

After six months, plus physical therapy, I had a knee arthroscopy. The surgeon was also supposed to remove a painful heel spur, but didn’t. Instead, he accidentally severed a nerve in my left heel, immediately triggering what was then called RSD.

In less than five years, the monster spread to all four of my extremities. I had every therapy, blocks, multiple implants and other procedures, but all ultimately failed.

Back to California I trekked with unexplained, unimaginable pain. I had no job, no insurance except for work comp, and was alone -- questioning my sanity about the career change.

ROCHELLE ODELL

I was eventually placed on a medication only regimen, and for over 16 years was on high dose opioids, along with high dose Diazepam, high dose Lidocaine, and three other meds. Funny thing was, I did very well with them.

Was my pain gone? With RDS/CRPS? No, but it was controlled to the point where I could function. I drove, took good care of my small home, and remained active despite the severity of my disease.

Fast forward to 2016. Those of us suffering from unrelenting intractable pain remember all too well what began that year. Thank you, CDC. All my meds stopped suddenly, but I had no idea why until 2017. A new life of hell began. I didn’t leave the house and was mostly bedbound, only getting up to let my very worried little dog outside, or for a trip to the bathroom or kitchen. Showers? What was that? Just going to the bathroom completely drained me. Thank heaven for adult wash cloths.

I discovered online shopping, thankfully, so we survived. I had no family where I now lived and felt frightened and frustrated. It was like my world had ended. I no longer trusted any doctor or nurse, because most were condescending and uncaring, which really saddened me. I gave up an excellent career in aerospace to go into a profession to care for others, nursing. What happened to those people?

In 2018, I returned to pain management and was placed initially on low dose Norco.  By then my pain was out of control and I knew this would be a new era when it came to pain management. I also knew I was very lucky to have found a provider who would prescribe any opioid. My dose was slowly titrated up, although it was still only a third of what it used to be. I also became a palliative care patient.

I have learned to make my medications work for me, using less on tolerable days and more on bad days, ever cautious about running out early.  I learned, or rather adapted, to finding new ways to do my yard and housework. The last five years I decorated for Christmas like I never used to and began inviting friends over for holiday meals. I became active in my homeowner’s association and was elected vice president. It’s a large senior community with over 1,000 homes.

Have I paid the price for my new endeavors? You bet, big time, for several days at a time. But I did not give in to the pain.

I had a wonderful holiday thanks to sweet friends, and had two pain friends over on New Year’s Day for black eyed peas. One brought her husband. The other recently lost her husband, so she brought her son.

What’s the point of my 30-year story? To share that life does not have to end due to unrelenting pain. Yes, we have to fight far too many battles and no one should be suffering like we do. I decided not to let my nightmare consume me and refused to let it destroy what life I have left.

I am now 76. At this moment my left foot and leg are throbbing, and my whole spine feels electrified. Pain management ordered a full spine MRI to rule out arachnoiditis and the myriad of other problems already diagnosed. My left hand and arm feel like they’re on fire, but I know that when I finish this column, it’ll be time for my meds and some relief.

I want all my pain friends to stand up to your pain even when you feel you are at your wits end. Resurrect the fighter in you. Call a friend or have one over for tea or hot chocolate with this cold winter. You can do it! Tell your pain where to go, please, for you!

Rochelle Odell lives in California.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

Learning How to Cope With Childhood Trauma

By Cynthia Toussaint, PNN Columnist

My world became unreal and terrifying when I was 18. Literally, everything looked, sounded and felt distorted. While I’ve long known this experience is called “derealization,” I only recently discovered it’s a form of dissociative coping that sprung from childhood trauma – trauma that also seeded a lifetime of chronic pain, including my Complex Regional Pain Syndrome.

During my trauma-release work last year, I learned that dissociation protects us from experiencing what is too overwhelming: perceived annihilation, if you will. My childhood years were so traumatizing, I now see that my mind made everything unreal to escape the horror of my world, which included domestic violence, mental illness, addiction and suicide.

There are five different forms of dissociation (depersonalization, derealization, amnesia, identity confusion and identity alteration), and my trauma therapist explained that, unfortunately, derealization is the least common variety, with scant research behind it. Also, it’s near-impossible to manage.

When my reality imploded a lifetime ago, my derealization felt anything but protective. It invaded me so dark and destructively, I feared I’d gone insane and that my next stop was an asylum.

It all started by eating too many pot-filled brownies while I was on an anxiety-ridden outing with my abusive brother and his posse. To get home, I was named designated driver because I’d partaken less than the others. I was terrified because I felt like I was on a bad trip. Also, I’m awful with directions and knew my brother would mercilessly belittle me for my wrong turns.               

Still, I took the wheel. Soon, out of nowhere, or so it seemed, I blew through a stoplight and missed a speeding Mack truck by a hair, my spatial abilities incapacitated. There must have been an angel on my shoulder that day as we all should have died. In a way, I did.

After being relieved of my driving duties, the people around me, the cars outside, even my own body became terrifyingly unreal and distorted, like being in a funhouse hall of mirrors. I also had such severe paranoia that when my brother’s girlfriend took a turnoff I wasn’t familiar with, I was certain she was driving me to hell. And when I say hell, I mean fire, brimstone and the guy with the pitchfork and tail.  

The horror didn’t let up for the next couple of weeks as I felt I was looking through a veil of fog. Perhaps the freakiest part was that everyone acted as though they weren’t on the same drug trip. I felt alone, always holding the tears and screams inside. I tried to play along with everyone else’s normal, reminding myself that if I let out my terror, they’d likely have me committed.

Panic Attack

Soon after, when my family took a long-anticipated trip to New York City, I lost my marbles. It was too much of a load of sensory input that I was unable to process in my vulnerable state. One night in our hotel room, I released my panic with a gut-wrenching scream that didn’t let up for hours. Horrified, my family got me to an ER, and I was diagnosed with an anxiety attack. I only wish.

After that, my derealization became my new normal. Good god, it didn’t let up for an entire year. During college and my first professional dancing job, I learned to cope by using distraction and reminding myself that the bad times were temporary, that some days were better than others.

After developing CRPS and seeing my life and dreams crumble a few years later, I had to give in to the spreading, fiery pain by moving back into my mother’s home. Anxiety, fear and despondency took over and my derealization roared back worse than ever. I was debilitated to the point that I could only lie on a bed and stare at cracks in the wall. It was a single crack that looked real to me.

Out of desperation, I saw a compassionate psychiatrist who mercifully blew open my world. I was stunned as he asked questions that lead me to understand that, not only did he believe me to be sane, he actually knew what plagued me. Stunned, I asked him if my symptoms were familiar.

“Let’s just say that if I had a nickel for every patient that came to me with what you’ve got, I could buy something expensive,” he told me. With that, a ton of weight lifted from my shoulders.

This healer put me on a benzodiazepine, Klonopin, and gave me a book that detailed my dissociative disorder. I was no longer alone and, at last, knew I was sane. Regarding the Klonopin, the good doctor added, “I wouldn’t be surprised if your pain lets up as well.” 

Within a few days, my derealization miraculously eased by about 80% and, as a bonus, I went into my first CRPS remission. The word “hope” re-entered my vocabulary, and I was again among the living.           

44 years after eating that brownie, I still wrangle with derealization. If stressed or triggered, the fog closes in, but it no longer runs me. I’m fortunate the clonazepam (generic for Klonopin) is still effective, as I have a brother who isn’t as lucky. He’s suffered most of his life with derealization, and nothing has ever provided respite.

Trauma brings on so much bad in so many ways, and our minds and bodies go to astounding extremes to persevere. Since my trauma-release work, I’ve arrived at surprising new understandings and feelings. I’ve come to a place of acceptance, even a bit of gratitude, for my derealization. It’s gifted a lifetime of protection by shielding me from what I likely wouldn’t have survived. It was simply trying to do right by me. Still is.              

For real.           

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.”

‘Promising Results’ for Low-Dose Naltrexone as Pain Reliever

By Pat Anson, PNN Editor

Low-dose naltrexone (LDN) continues to get more recognition from the medical community as a treatment for some types of chronic pain.

In a review of 47 studies on the off-label use of LDN, researchers at the University of Kansas Medical Center found “promising results” that naltrexone improves pain and function and reduces symptom severity in patients with chronic inflammatory or centralized pain. Most of the studies were small, however, and larger clinical trials are needed to demonstrate LDN’s efficacy.

“Though the results look promising, further, more well controlled studies are required before formal recommendations can be made,” said lead author Adam Rupp, DO, who will present his findings this week at the annual meeting of the American Society of Regional Anesthesia and Pain Medicine (ASRA) in Orlando, Florida.

Naltrexone is an inexpensive generic drug that is only approved by the Food and Drug Administration as a treatment for substance abuse. In 50mg doses, naltrexone blocks opioid receptors in the brain and decreases the desire to take opiates or alcohol.  

But in smaller doses of 5mg or less, patients with fibromyalgia, interstitial cystitis, intractable pain and other chronic conditions have found LDN to be an effective pain reliever. But because LDN is prescribed “off label” for pain, much of the evidence supporting LDN is anecdotal.

How naltrexone works is not entirely clear, but LDN supporters believe the drug helps modulate the immune system, reducing inflammation and stimulating the production of endorphins, the body's natural painkiller. LDN is not recommended for people currently taking opioid medication because it blocks opioid receptors and may cause withdrawal.

In their literature review, Rupp and his colleagues found that LDN improved physical function, sleep, mood, fatigue and quality of life in patients with Complex Regional Pain Syndrome (CRPS), fibromyalgia, diabetic neuropathy, Crohn’s disease, rheumatoid arthritis and low back pain. In patients with Crohn’s, improvements were also noted in the colon’s appearance during colonoscopies.

Side effects from LDN were minimal, consisting most commonly of vivid dreams, headaches, diarrhea and nausea. Most of the side effects resolved with continued use of LDN.

“The evidence in this review provides support for the off-label use of LDN for various chronic
inflammatory or centralized pain conditions. However, it is apparent that high-quality controlled studies focusing on administration, dosing and follow up time are needed before formal recommendations can be made,” Rupp said.

“Despite the current paucity of high-quality evidence in the literature, LDN continues to offer promising results in the management of symptoms in patients with chronic inflammatory or centralized pain conditions.”

Because LDN is not recommended as a pain treatment by the FDA or professional medical societies, patients interested in trying it often encounter doctors who refuse to prescribe it or don’t know anything about it. The LDN Research Trust includes a list of LDN-friendly doctors and pharmacies on its website.

Finding Peace While Fighting Cancer

By Cynthia Toussaint, PNN Columnist

It’s the damnedest thing. Despite this month being my 40-year anniversary with high impact pain, and while I battle an aggressive breast cancer recurrence, people tell me that I look healthy and happy.

Stranger still, I feel more grounded and centered than ever. In fact, I’m down-right peaceful. So much so, when I recently saw my osteopath, she said that I no longer needed her treatment because I was “in the flow.”  

After delving deep into this disconnect, I’ve unearthed the workings that have brought me to this sacred place. And now that I’m here, I plan to protect my peace.

To start, I’ve learned to neutralize platitudes and their associated shame. When people blow by the gravity of my cancer recurrence by assuring me that staying positive will save the day, I politely dismiss their cliché as unhealthy and unrealistic.

There’s no one alive who could face a second round of breast cancer without being mad as hell. That being said, I’ve given myself permission to move through the five stages of grieving – denial, anger, bargaining, depression and acceptance – which has allowed me to come to an authentic level of positivity… and peace.  

Also, I’ve taken control of my cancer care. This is a big deal. After listening to my oncologist’s by-the-book treatment plan, I shared that, while well-intended, I thought his recommendations would kill me.

Instead, he and I sought guidance from trusted sources, and agreed on a plan that was tailored to my individual needs, including the complications that Complex Regional Pain Syndrome present. I won’t lie to you, the treatment is at times brutal. But I’m choosing it, and with control comes peace. 

And there was a miracle.

With the synergy of my current treatment (low dose chemo, immunotherapy infusions and a robust dose of self-care), my tumor quickly dissolved from the size of a ping pong ball to one that can’t be found. Wearing a Cheshire cat grin, my oncologist recently shared that in his 45-year career he’s never seen such a response.

So how did my body do that? Yes, the med cocktail certainly played its part, but I’m convinced that finding peace is my secret sauce to healing.

Besides taking control of my medical care, I’ve become religious about upping my terrain-game for the healthiest body and mind. I’ve switched to a vegan diet with lots of fish, committed to an hour-long workout each morning, get in bed early to promote deep sleep, and have radically reduced my stress by identifying and removing toxic people from my life. These are the self-care strategies we hear of time and again, and for good reason. When practiced, they work! 

Letting Go of Trauma

For more peace, I’ve vastly upped my game by adding a “paths-less-taken” approach.

Like most of us with pain, I suffered much childhood trauma, the foundation of my un-wellness. I’m working diligently on trauma release using various methods, one being forgiveness. Through daily visualization and meditation, I’m practicing the art of letting go of trespasses.

Instead of allowing anger and hurt to turn into psychic stagnation, I acknowledge the negative emotion, thank it for lessons learned, and send it on its way. Forgiveness is a choice, and I’ve decided to free myself from poisonous energy so I can move forward with peace.

I often remind myself that when a person is cruel, it’s not about me, but rather a challenge they’re experiencing on their life path. And when I can, though still a work-in-progress, I light a candle and wish them well.

Most surprising, I recently stumbled upon my biggest trauma-releasing, peace-inducing tool, as I intuitively knew this blast-from-the-past would move my wellness ahead by eons.

Several months ago, I surprised myself by bringing my grandmother, who passed long ago, into my visualizations. Soon other long-gone relatives arrived. Of particular interest was my Aunt Grace, who continues to lead my healing rituals. Grace died a couple decades before I was born, but I’ve always felt a bond so close, I’ve dedicated my life work to her. She is my guide and my angel.

I now understand that our connection comes from sharing similar traumas. We were both the “fixers” of impossibly broken families and both got profoundly ill at 21. Tragically, Grace died from leukemia. Mine was a different death when CRPS ravaged my body.

Through arduous work and by facing hard truths, I now see that, like Grace, most of my ancestors suffered profound trauma, and by sharing their genes, I’ve inherited the injury that binds me to disease. Science calls this epigenetics.

By healing the wounds of my ancestors through rituals, I’m healing myself. Additionally, I’m breaking cyclical familial patterns by not passing along the burden of traumatic energy to those I engage with.

These seemingly “woo woo” rituals appeared novel – hell, I thought I’d invented a breakthrough therapy! That was until I described them to an integrative trauma expert who shared that “Ancestral Healing” is a real thing, scientifically proven and all.

Life is precious. So is our life preserving, life enhancing peace. Whether I’m on my way out now or have 30 more years of kick in me, I’m focusing on protecting this essential resource. 

I’m convinced that most of our pain, physical and emotional, springs from inner tumult driven by deep wounds, many of them handed down. Through intentional work and practice, we can quell that upset and find peace. Then the challenge is to hold our peace sacred, to protect it from internal and external “vampires” that aim to trip it up.

My mom turned 90 last month and is suffering from advanced Alzheimer’s, I believe brought on by trauma. That trauma has passed down to me, seeding a lifetime of illness.

I recently spent time with Mom at her new memory center, and later that day delighted in meeting my newest grand-niece named after this beautiful, generous and loving woman.

I hope that by healing the wounds our ancestors couldn’t, I’ll help this li’l darling have a pain-free, peace-filled life, one she can, in turn, hand down.            

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.”

Justin Brown: A CRPS Story of Hope

By Miles Ryan Fisher

When Justin Brown took his first steps at the age of 40, his parents were overcome with joy. Only, it wasn’t the same joy that they’d experienced when he’d taken his first baby steps.  No, this joy came with great pain — the kind of pain that comes with watching one’s child lose nearly half his life to a debilitating condition called Complex Regional Pain Syndrome, also known as “the suicide disease.”

In 2006, just as Justin prepared to enter the working world as a Penn State graduate, he started losing weight. He began regurgitating his meals, vomiting most of whatever he ate. Over time, he grew gaunt. His face sunk and his cheekbones protruded. His skin wrapped around his body until he looked emaciated.

Doctors didn’t have answers. When Justin reached the point that he couldn’t hold down any food, they inserted a J-tube — a feeding tube — in him so that food could bypass his stomach. But it wasn’t his stomach that was the problem. It was the parasite they hadn’t tested for — the one dwelling in his intestine right where the tube was inserted. When they removed the J-tube, they accidentally left a part of it in him.

When Justin awoke from surgery, he awoke to something even more unbearable. Something hellish. The operation triggered a pain that spread through his entire body and left him incapacitated, even after the parasite and tube remnant were removed. At the age of 26, Justin no longer had the strength to walk, not even to the bathroom.

Since 2007, he lay in a hospital bed in the middle of his parents’ living room in Fort Washington, Pennsylvania, his arms at his sides, his head always facing the same direction. In order to subdue the pain that incapacitates him, Justin takes a daily mixture of heavy pain medication, including narcotics.

It took many years until Justin and his family found a doctor who offered an accurate diagnosis: Complex Regional Pain Syndrome or CRPS. Only, the doctor didn’t call it that. Back then, the condition was known as Reflex Sympathetic Dystrophy or RSD.  

CRPS/RSD happens when an injury — as minor as a broken finger or as major as surgery — triggers a pain so severe that it is, according to the McGill Pain Index, worse than than amputation. The pain typically remains in the region of the injury, usually involving a limb. But in Justin’s case, it spread through his entire body.

“A lot of people feel like their skin or their nerves are burning, but for me it feels like my bones are being crushed,” Justin says. “If I took my worst pain before CRPS, that would be like a 1 out of 10 compared to my pain now. You really can’t describe it.”

The pain that he’s bravely battled for 17 years has been excruciating and constant. With no end. And no cure.

“It’s there 24/7, and you don’t know when it’s going to go away or if it’s going to go away,” Justin says. “But I had two choices. One was to completely quit. And the other was to keep going and hope that it’ll get better.”

Finding Hope

But now, Justin is finally getting part of his life back through a form of non-allopathic (without drugs or surgery) treatment offered at the Spero Clinic in Fayetteville, Arkansas.

The clinic, which has over 40 employees and treats hundreds of patients every year, was founded in 2012 by Dr. Katinka van der Merwe. Born in South Africa, van der Merwe immigrated to the United States in 1994 and earned her Doctor of Chiropractic degree with the intent of using it to treat individuals who suffer from CRPS and other chronic pain conditions. .

Her clinic’s approach involves treating the vagus nerve, which is the longest and most complex of the body’s 12 cranial nerves. Individuals who suffer from chronic neurologic disorders often have an underactive vagus nerve, which causes inflammation that is either localized or, as in Justin’s case, envelops the entire body. It’s this inflammation that can cause excruciating pain.

“My philosophy and belief is that the body is incredibly intelligent and can heal from the inside out,” van der Merwe says. “People don’t come here to get a diagnosis and medication — they come here to have their bodies rehabilitated.”

The clinic approaches pain treatment in a holistic and noninvasive way, using a variety of therapies and tools involving electrical, physical and auditory/visual/sensory stimulation. It’s the clinic’s range of therapies that helps correct the nervous system and – hopefully -- puts the patient’s pain in remission.

“It’s a completely different approach to everything that I’ve tried so far,” Justin says. This has included the most radical of forms, such as being placed in a ketamine-induced coma in Mexico and brought out of it with the hope that his nerves would essentially reset. Some CRPS patients have found relief with ketamine infusions, but it didn’t work for Justin.

It was last March that Justin began treatment at the Spero Clinic. As soon as the first week ended, Justin experienced progress. It began with his ability to move his hands. Then the next week, he stood up. On the third week, he walked for the first time in 15 years.

Every week after that has brought similar victories — small to a healthy person, but momentous for Justin. Regaining his ability to drink a Gatorade. Regaining his ability to curl two-pound weights. Regaining his ability to wear clothing that fits him, rather than clothing so loose as to not press against his body and cause him a great deal of pain.

“Before I got here, the most I could take were fifteen steps,” Justin says. “And they weren’t good steps. I’d just drag my feet on the ground. Now I walk from my hotel room down a couple hallways, through the center of the hotel, and outside.”

Every incremental gain helps Justin continue to grind. Unlike most patients, who require two or three months of treatment, Justin will need at least half a year because of how severe his CRPS is.

Fundraising Help

The cost of every week of treatment — about $3,000 — is typically not covered by insurance, which does not make it any easier on Justin or his family. If anyone knows this, it’s Philip Robert, one of the Spero Clinic’s CRPS patients in 2016.

Robert spent ten weeks at the clinic and found his recovery so miraculous that he was inspired to form the Burning Limb Foundation, a non-profit whose mission is to raise funds to provide financial assistance to people with CRPS, primarily for treatment at the Spero Clinic. What makes the foundation different from most other non-profits is that 100% of the donations it receives are applied to treatment costs. And unlike other fundraising platforms like GoFundMe, donors are then able to write it off as a charitable gift on their tax returns.

“The idea is to get (CRPS patients) started — get them seed money — so that they can then do a fundraising campaign in the nonprofit world,” Robert says. “We provide a platform in which families can utilize their resources—their network of friends and family—who may be willing to give a little bit more.”

It’s through the Burning Limb Foundation that Justin has received much-needed financial support from family, friends and even people who have never met him but want to play a role in his recovery.

It’s that recovery that Justin realizes is so important, not only to live a life free of pain, but also to inspire others like him who suffer from CRPS. While not cured of the disease, he hopes his remission can bring hope to others.

“If it can work for me, it can work for anybody,” Justin says. “It’s not guaranteed to work for everybody, but it can work for anybody.” 

Miles Ryan Fisher is the Assistant Director of the Building Trades National Medical Screening Program and also serves on the advisory board for Columbia Lighthouse for the Blind. His articles have appeared in the Washington Post, Philadelphia Inquirer, Washingtonian Magazine, Motherly, and Go World Travel.

CRPS Is a Bad Name for a Painful Disease

By Dr. Forest Tennant, PNN Columnist

A few years ago, the “pain powers” of the day decided to change the name of a mysterious painful disease called Reflex Sympathetic Dystrophy (RSD) to Complex Regional Pain Syndrome (CRPS). 

Not long after the name change, I received a telephone call from a reporter who mistakenly believed that “CRPS” meant that chronic pain statistics were now going to be kept by geographical regions.  He wanted to know which regions had the least and worst pain problems.  He sounded rather despondent when I informed him the regions weren’t geographic areas, but referred to parts of the body. 

After a sigh and pause, he asked how many regions there were and where they were located on the body.  I finally had to admit that although I was familiar with legs, arms, buttocks and ears, I hadn’t been able to come to grips with exactly what the body’s regions were or where they were located, as they weren’t mentioned in Gray’s Anatomy.  The reporter apologized for bothering me and said he thought he would focus on prostate issues instead.

Not long after I disappointed the reporter, I attempted to obtain a prior authorization to pay for CRPS medications from a patient’s insurance company.  I had mistakenly assumed that the label CRPS had reached the bowels of the insurance industry, but a grouchy lady on the phone informed me that her insurance company didn’t recognize regional pain and only paid for legitimate painful diseases.  Furthermore, she questioned my ability and sanity, accusing me of creating a fraudulent diagnosis.  At this point, I rightfully decided the CRPS label may have problems!

These episodes underline the point that lots of people with CRPS are being poorly treated due to a name that doesn’t even sound like a legitimate disease or disorder. Their very real illness goes unrecognized and payment for treatment is often denied by their insurance.  At best, the CRPS label trivializes a condition that can be so severe as to force a person into bed, endure great suffering, and die before their time. 

The history of the name CRPS is most telling.  A British surgeon named Alexander Denmark wrote the first known description of a disease like CRPS in about 1812.  He described a soldier injured by a bullet this way:

“I always found him with the forearm bent and in supine position and supported by the firm grasp of the other hand. The pain was of a burning nature, and so violent as to cause a continual perspiration from his face.” 

Another physician who was working with wounded Civil War soldiers, Dr. Silas Weir Mitchell, published his findings in a 1864 monograph entitled “Gunshot Wounds and Other Injuries.” Mitchell described the basic injury as burning pain located in close proximity to the battle wound.  He also described the well-known characteristics of the disorder, including glossy red or mottled skin without hair, atrophic tissue, and severe pain caused by touch or movement. 

In his 1872 book, “Injuries of Nerves and Their Consequences,” Mitchell coined the term “causalgia” which he derived from the ancient Greek words kauaoc (heat) and oayoc (pain) to emphasize the nature of the disorder.

The term causalgia remained in place until about 1946, when Dr. James Evans, a physician at the Lahey Clinic in Burlington, Massachusetts, described 57 patients with injuries similar to those labeled causalgia by Dr. Mitchell.  Evans described his patients as having intense pain and clinical signs that he explained as being due to “sympathetic stimulation.” The patients experienced rubor (redness), pallor, and a mixture of both sweating and atrophy.

This syndrome would appear after fractures, sprains, vascular complications, amputations, arthritis, lacerations, or even minor injuries.  Evans found that sympathetic nerve blocks usually relieved the pain, so he rejected the term causalgia and gave it the name Reflex Sympathetic Dystrophy (RSD).

The name RSD pretty well replaced causalgia until 1994, when the International Association for the Study of Pain (IASP) changed it to Complex Regional Pain Syndrome (CRPS).  This change was led by the renowned pain specialist John Bonica, MD, who wanted to shift the focus away from the terms dystrophy, reflex and sympathetic back to pain. 

This argument for the change had validity, in that the condition doesn’t really have a reflex component and sympathetic blockades do not consistently relieve pain.  Also, dystrophy is medically defined as tissue degeneration, such as that caused by diseases of nutrition or metabolism. The IASP wanted the primary focus to be on pain.

Unintended Consequences

While the name changes from causalgia to RSD to CRPS were intended to bring better pain relief to needy patients, there have been several unintended consequences.  In fact, a reasonable argument can be made that the name change has been counterproductive. 

What should CRPS now be called?  It’s doubtful that a new consensus could be quickly developed, as the syndrome is complex and involves multiple issues. 

Frankly, I personally believe we should junk the term CRPS. It trivializes a most serious disorder, and I have found use of the name CRPS actually deprives some patients of the treatment they need.  I have often simply used the term “vascular neuropathy” to effectively educate pharmacies, families, insurance companies and patients about the condition.  At least this term sounds legitimate and serious!

Fortunately, regardless of its name, the syndrome appears to be diminishing both in incidence and severity.  Workplace injuries and vehicular accidents get immediate attention these days, while early medical and physical interventions usually prevent great severity. 

Also, there is now an understanding of centralized pain and its electrical discharges, which are greatly responsible for the so-called “sympathetic” symptoms of the disorder.  Treatments for centralized pain are clearly benefitting persons with this unfortunate disorder, regardless of whatever name you wish to call it.  I would call for a name change but I don’t know who to call!

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s 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.   

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.

Breathless: My Anger at a Failing Body

By Cynthia Toussaint, PNN Columnist

Once upon a time, life was easy. Breathing was a breeze, lungs filled with promise and hope.

Then I got sick. Really sick. Of late, when I look back at the last forty years, I’m uncharacteristically angry that my Complex Regional Pain Syndrome stole my life, taking that breath away.

I’m spitting mad that my body keeps failing me. It’s seemingly giving me the finger for having a positive attitude and taking care of myself, as all I get is sicker and sicker. I’m tired of being the good sport, forever the one with “super human strength” who flashes a smile no matter what.

I hate 2022, as it’s trending to be my most miserable year yet. If it ain’t one thing, it’s another. To start, I had a monster of a virus all of January, most of March, and my symptoms are here again in mid-April. I can’t shake this ever-revolving bug that perplexes my doctors.

They can’t figure out my debilitating fatigue, laryngitis and diarrhea, all complimented by vertigo and, yes, difficulty breathing. Even my once heavenly swims have turned into an exercise of wheezing and gasping.

I recently got a work-up including labs and chest x-ray, but everything came out normal. A friend mentioned her concern that I might have symptoms of an impending heart attack. Yeah, wouldn’t be surprised.

I’m also mad as hell because COVID never ends. At least not for me. When we were all in this together, the isolation was do-able. In fact, it was comforting because, for once, I wasn’t the only one alone.

But now I’m left behind because being immuno-compromised with an assembly of autoimmune conditions puts me at high risk for long COVID. I feel lonelier than ever watching the world reconnect, while hearing of new variants and upcoming surges.

To top it off, my vaccines and booster shots were hell. With each dose, I’m left reeling with intense fibro flares, hives and many of my previous chemotherapy side-effects. Oh, did I mention I fought Triple Negative Breast Cancer in 2020, the WORST thing I’ve ever been through?

Breathe, Cynthia. Breathe.      

And then there’s this. During the rare times I escape the condo, N95 dutifully strapped on, I resent the never-ending pity looks and pointing because I use a wheelchair. Folks, it’s been FOUR DECADES of this transportation humiliation. I feel like I’m going to lose it the next time someone looks beyond me to ask my partner John what my name is. Or gives me the classic, “It’s so good that people like you get out.”

I find myself staring in awe at people who can walk without a thought. They’re free and don’t even know it. I must admit, these days I resent them for it. When I’m outside, seems it’s always just me and some little old man who are in this wheeled imprisonment. I even resent the old man, cuz he got his turn at life.

This post wouldn’t be complete without exhaling a potentially catastrophic cliff-hanger. Yeah, I’m talking about the aforementioned “Big C.” Since remission, I live in constant fear that it will recur much more aggressively in the first two years, what Triple-Negative is masterful at!

A few days ago, I went in for my periodic breast exam, a ritual that keeps me from hyperventilating during my MRIs. The exams have always been clear, which helps me get through the maelstrom of “scanxiety.”

I felt oddly confident this go-around, even enjoying small talk with my oncologist. After all, this was the lead up to my two-year MRI. I was almost home free when the energy in the room shifted. Completely. My doctor found an enlarged lymph node under my arm that he thinks is a recurrence. Or, better yet, a whole new cancer.

I’m suffocating.   

While I await my imaging results, I’m short-tempered and yell a lot. The cats run under the bed. Fearing the worst, I wonder if my body can fight aggressive cancer again. Let’s face it, I won’t have a good shot the second time around.

Also, in my darkest moments, I’m not certain I have a life worth fighting for. I love myself deeply, but am struggling these days to find gratitude in a world that feels devoid of grace.

I don’t get it. I swear, I’ve been a good person my whole life. I’ve played by the rules, worked hard and always helped the less fortunate.

People tell me to be positive, but I’m just angry. Maybe my rage will turn back to strength and unflagging perseverance. Maybe not. All I know is that I can’t catch my breath. 

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

Ketamine Gets FDA Orphan Drug Designation for CRPS

By Pat Anson, PNN Editor

A Canadian biotech company has announced it has been granted orphan drug designation from the U.S. Food and Drug Administration to investigate the use of ketamine as a treatment for Complex Regional Pain Syndrome (CRPS)¸ a disorder of the nervous system that causes severe, intractable nerve pain. Currently, there is no FDA approved medication for CRPS.

Toronto-based PharmaTher Holdings specializes in the development of ketamine and other psychedelic drugs for mental health and pain conditions. The company also recently received an orphan drug designation for ketamine as a treatment for Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig's disease.

“Receiving our second FDA orphan drug designation with ketamine for CRPS continues our momentum in building a specialty ketamine-based product pipeline for not only mental health disorders, but also for rare and near-rare conditions present in neurological, pain and inflammatory disorders,” Fabio Chianelli, CEO of PharmaTher, said in a statement.

Ketamine is not an opioid, but acts on pain receptors in the brain in a similar manner. Although the drug is only approved by the FDA for anesthesia and depression, a growing number of clinics provide off-label infusions of ketamine to treat difficult chronic pain conditions such as CRPS. In high-dose infusions, ketamine puts patients into a temporary dream-like state that can lead to hallucinations and out-of-body experiences.

The FDA first approved ketamine in 1970 and the medical patent on it expired years ago. The goal of PharmaTher is to develop its own propriety formulation of ketamine and expand its use. Orphan drug designation helps speed that process along by encouraging companies to invest in new uses for old drugs, often jacking up the price in the process.

If successful, PharmaTher says it would have seven years of exclusive marketing rights for its ketamine formulation, as well as potential tax credits and the waiver of $2.4 million in FDA filing fees.

In 2019, the FDA approved Spravato, a ketamine-based nasal spray developed by Janssen Pharmaceuticals, as a treatment for depression. A single dose of Spravato costs about $900.

“It seems they are doing something similar to what Janssen did with Spravato,” says Kimberley Juroviesky, a retired nurse practitioner who receives ketamine infusions for CRPS. Juroviesky co-chairs an advocacy group that’s trying to get more insurance coverage of ketamine.

“They are taking ketamine and changing it slightly to create a new drug. Then they can charge hundreds for it. We are hopeful though that maybe this can help us in our fight to get generic ketamine covered by insurance,” she told PNN in an email.

PharmaTher plans to launch a Phase 2 clinical trial of its ketamine formulation in 2022. In addition to treating CRPS, the company recently began a clinical study of ketamine as a treatment for Parkinson’s disease, and has filed a patent application for ketamine as a treatment for obesity and Type 2 diabetes. PharmaTher is also developing a microneedle patch for the delivery of ketamine and other psychedelic drugs.

While ketamine is emerging as a trendy pain reliever and many patients swear by it, medical societies urge caution. Guidelines from the American Society of Anesthesiologists, American Society of Regional Anesthesia and Pain Medicine, and the American Academy of Pain Medicine only support ketamine infusions for CRPS and post-surgical acute pain. The guidelines say there is no evidence supporting ketamine infusions for any other type of pain.

A 2019 study of nearly 300 patients who received ketamine infusions found that over a third reported significant side effects such as hallucinations and visual disturbances.

Low Dose Naltrexone Being Studied as Treatment for CRPS

By Pat Anson, PNN Editor

Low-dose naltrexone (LDN) is already being used to treat a wide variety of chronic pain conditions, from fibromyalgia and interstitial cystitis to Ehlers Danlos syndrome and temporomandibular joint disorder (TMJ). Some doctors believe the drug may even be useful treating symptoms of a condition so painful it’s been called the “suicide disease.”

Soin Therapeutics, a small pharmaceutical startup based in Ohio, announced this month it has been granted orphan drug status from the Food and Drug Administration to explore using LDN as a treatment for Complex Regional Pain Syndrome (CRPS), a disorder of the nervous system that causes severe, intractable nerve pain.

"Obtaining Orphan Status from the FDA is an important milestone step for us at Soin Therapeutics. We look forward to running a large-scale clinical trial and eventually FDA approval to help patients suffering from CRPS," Dr. Amol Soin, the founder and CEO of Soin Therapeutics, said in a statement.

Currently, naltrexone is only approved by the FDA as a treatment for substance abuse. In 50mg doses, the drug blocks opioid receptors in the brain and decreases the desire to take opiates or alcohol. But in smaller doses of 5mg or less, some patients have found LDN to be a surprisingly effective pain reliever.

How LDN works is not fully understood, but supporters believe the drug modulates the immune system, reduces inflammation and stimulates the production of endorphins, chemicals produced by the body that reduce pain and anxiety.

It's important to note that because naltrexone is an opioid antagonist, it should never be taken with opioid medication – even in small doses -- because it may cause severe withdrawal.

"Low Dose Naltrexone has unique properties to specifically help the disease cascade of CRPS including attenuation of microglial cells involved in pain transmission, reduction of proinflammatory cytokines, antagonism of the Toll-like receptor 4 (TLR4), as well as stimulating release of endorphins which are the body's natural pain killers,” said Soin, who is a practicing pain management physician.

“Basically, this drug seems very well suited to treat several mechanisms of the disease process. All those properties would seemingly be quite helpful in CRPS patients. Best of all, this is a non-addicting and non-sedating drug that could be a new way to treat complex regional pain syndrome."

Soin Therapeutics hopes to develop a novel formulation of LDN and submit an Investigational New Drug application to the FDA before starting a clinical trial.

Because the patent on naltrexone expired decades ago, it’s a generic and cheap drug – perhaps the main reason it is not more widely used as a pain reliever. There is little incentive for pharmaceutical companies to market LDN or conduct expensive clinical trials to prove its effectiveness in treating pain.

Patients interested in trying LDN often encounter doctors who refuse to prescribe it “off label” or don’t know anything about it. The LDN Research Trust includes a list of LDN-friendly doctors and pharmacies on its website.