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.”

I’m Already Well Aware

By Mia Maysack, PNN Columnist

If I did not cling to my optimism for dear life, I'd scoff at the concept of an awareness month such as June being nationally recognized as Migraine & Headache Awareness Month.

That’s due to the fact I am someone who has lived with a daily reminder of intractable pain for over two decades. It isn’t those of us who can directly relate to the pain experience that are in need of awareness.

I feel many “awareness” efforts are limited or fall short in terms of gaining recognition for a specific cause or reason. People typically don’t concern themselves with issues that don’t directly affect or impact them.

Someone who hasn’t ever had a migraine couldn’t possibly understand how it differs from a regular stress headache. Furthermore, somebody who does experience an occasional migraine still cannot fathom what it would be like to have one on a more constant basis.

What transpires within and throughout our individual lenses of the world is real to us and valid, though different from others. That doesn’t lessen the next person’s experience as being anything less than our own.    

There have been some who have thought of my claims about illness are disingenuous. But the reality is that I actually learned to “fake” wellness, in an effort to create a sense of fulfillment and meaning in my life, despite the hand I’ve been dealt.

Others claim those of us who live with pain should be able to “fix” ourselves, once we acknowledge things like a childhood trauma; or that if we adopt “sufficient water intake” and “sleep hygiene” for example, all will be well.

Although I believe there’s some merit to those suggestions, and that they come from a decent, well-meaning place --- if it were that simple, I would be healed by now, along with millions of others who endure similar circumstances.

For a lot of us, we’ve had to come to terms with the fact that there may not be anything out there to give us back the life we once had or wanted. That’s because we’ve already attempted and tried just about everything in search of pain management or relief.

Often, we’re unable to obtain access to options that might ease our suffering because that process can be a grueling one and often has a ripple effect of further complications, along with a multitude of hoop jumping. That’s why I’ve mostly refrained from making it a habit to ask for professional help. Instead, I have worked on acceptance, as there are not many things that anyone else can do for me.   

Relentless and untreatable ailments in any form are going to take a toll, but I hold steady to the concept of “pain” being a worldwide experience that each and every one of us can relate to in some way or another. Each of us have had moments when we’d do just about anything to have the discomfort end.

But instead of embracing the potential for common ground, we as a society tend to label people, when the cure is to be found in seeing and treating one another as fellow human beings. We never truly know where a person may be in regards to their mental health or quality of life, and need not make this already challenging existence any more difficult for ourselves or each other.

Given the extent I’ve witnessed how our healthcare system fails us, I had to choose to not identify with the victim mentality or wait any longer for answers elsewhere.  Ultimately, I stumbled upon empowerment in owning my situation, by tending to myself in ways that I am able. That was my education in self-awareness.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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. 

What If Pain Had a Color?

By Carol Levy, PNN Columnist

What if your pain had a color? Not a color picked to honor an awareness day or month, but an actual color?

I could walk into the doctor's office. “I understand you have pain. Where is it located?” he’d ask. I’d point to the area. It was a bright chartreuse, as blinding as a neon sign.

“Oh yes. You definitely have pain. Let's see what we can do about that,” the doctor would say.

Wouldn’t that be simpler, easier? Unfortunately, it isn’t.

After the trigeminal neuralgia pain started near my eye, I was referred to a neuro-ophthalmologist. Our first meeting did not go well. The level of pain, the resulting disability, and its effect on me made it hard to tell my story in a calm and thoughtful way.

Stopping to collect my emotions, gather my thoughts and make sense of what made no sense, I started and stopped, my words coming in fits and starts. I struggled to control my emotions and not cry.

After a few minutes he stopped me. “Stop being so schizophrenic in how you're telling me your story,” he said. “Your pain is the result of anxiety.”

I didn't understand what he meant. No pain like mine could just be the result of nerves. He wrote a prescription for an anti-anxiety drug, but that only increased my stress, and the anger I felt towards the pain and medical profession.

Undaunted and with hope unfettered, I kept the next appointment. Again, he listened. He still seemed unimpressed with my pain and my story. But his interest was piqued by a birthmark on my forehead directly over the area of the pain. He noticed it would turn a brighter shade of red during various times of the appointment.

I was prissy back then. I hated cursing and embarrassed easily. He was not averse to using profanity, and just one or two words was too much for me. When he cursed, the birthmark would turn bright red. That changing of color and in the way my pain was triggered changed his feeling about my pain. He seemed more interested in it.

“I think it's time we bring you into the hospital,” he told me.

In those days, a doctor at a teaching hospital would be trailed by medical students, interns and residents. Like goslings imprinting on their mother, they followed the doctor everywhere.

When the group came to my room, the doctor wanted them to see how and when the birthmark changed color. He explained to them it was an outward sign of a neurovascular birth defect that he believed was the cause of my pain.

It was a teachable moment and the doctor liked milking it. He knew how easily I was embarrassed and how that would change the coloring of the birthmark. To get it to turn bright red, he jokingly threatened to expose himself (this was in the 1970’s). Immediately it changed color. I was so embarrassed.

It got to the point where all he had to say was, “I'm going to…” And like Pavlov’s dog, the birthmark turned bright red. He did that trick for his lot of ducklings, who were amazed.

My pain still did not have a color, but the changing color of the birthmark showed a visible, anatomic reason for it. It made my pain more real to others. If not for the birthmark and the trick of turning it off and on, the correct treatments might not have been tried.

Cancer patients have lumps or growths. Jaundice turns you yellow. Us? We have nothing but our word. Until pain has a color, our word has to be enough.

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.

Let’s Talk About Chronic Pain and Sex

By Ann Marie Gaudon, PNN Columnist

Do you remember that catchy song from the early 90’s by the hip hop group Salt-N-Pepa called “Let’s Talk About Sex”? I sure do and I still think it’s fun!

For many people, sexual activity and intimacy are incredibly important factors of living well, being happy, and feeling close to one another. But when chronic pain enters a life, those factors may take a big hit. People don’t talk enough – or at all – about living in pain and sexual intimacy.

Let’s talk now baby!

In my many years of being with people in pain, I’ve seen sex become a taboo subject. It can be denied not only to another, but to oneself as well. It gets complicated when the person in pain worries about their physical performance or if they can even engage in sexual activity without increasing their pain.

This most certainly affects self-esteem and confidence in the bedroom. Then we have a situation where everybody stops talking -- when they should be doing just that.

Why does sex matter if you have chronic pain?

It matters and can have a significant impact on your quality of life. Something amazing happens when you are the recipient of wanted sexual touching and intimacy. Your body will release endorphins, which are the body's natural pain reducers. You will feel better and happier, not to mention all those other good feelings you may experience.

The name endorphin comes from “endogenous morphine,” which means they come from inside the body and mimic the effects of morphine. For that reason alone, I tell my clients to have more sex if possible. And if they are single, to get busy masturbating. An orgasm is an orgasm, and your body doesn’t care how it gets there. Just get there.

In 2017 a functional MRI study was conducted measuring brain activity in women during orgasm. “Brain activity gradually increased leading up to orgasm, peaked at orgasm, and then decreased,” researchers found. This activation included many regions of the brain, including those that process rewarding experiences such as food and sex. 

Another study from 2013 shows that orgasm may have the ability to decrease or alleviate headache pain. Want better sleep? Have regular orgasms. Yet another study in 2015 showed the mediating effect of sexual activity on pain and depression for those suffering from low back pain.  

How are you going to have sex if you have back pain?

I found out that the clinical community was in contact regularly with Canadian Dr. Stuart McGill, Chief Scientific Officer for Backfitpro and a distinguished professor emeritus at Waterloo University. McGill is asked repeatedly by clinicians about couples who are celibate because of back pain. Are there any guidelines on sexual technique that can reduce the risk of more pain?

The challenge was on! Professor McGill and graduate student N. Sidorkewicz conducted the only study in the world that took real couples and measured their spine postures and muscle activity while engaged in various sexual positions. This was no small feat, considering the challenges of recruitment, instrumentation and developing an experimental protocol that satisfied the ethics research committee and requests from the medical community. 

The study measured muscle activity and 3D spine and body movements, using the very same technology that was used in the making of Avatar. The object was to create an atlas of sexual positions that did not trigger back pain.

Professor McGill has a short version of a sexual atlas in his book "Back Mechanic," which includes spine-sparing positions that enable sex for people with back problems. The book guides the reader through a self-assessment of their pain triggers. Then, based on the specific trigger, positions and movements are shown to consider and to avoid.

I am super impressed with this work and I only wish that we had guidelines for virtually every source of pain.

Are there other pain conditions that defy sexual activity?

You bet there are! One that comes to mind is pelvic floor dysfunction or PFD. I have known many people with this diagnosis. We all have a pelvic floor, whether you were born with a penis or vagina, and so no one is immune to PFD.

One female patient with this diagnosis -- more specifically “hypertonic pelvic floor muscles” -- told me that just a light touch and/or engorgement from arousal can be enough to create excruciating muscle spasms.

“Spasms beget spasms,” she said. “It is very, very painful and truly sad that we avoid intimacy. I have a Pavlovian response developed over many years of severe pain and flares that lasted for days.”

The forceful, rhythmic contractions that occur for anyone having an orgasm can set off a cascade of painful symptoms. Here are links two simple videos to explain male and female pelvic pain.

PFD is currently treated by specialized physical therapists and yes – there are success stories, thankfully.

How do I get busy?

As a person with any type of pain, you may need to get creative. You may need to adjust positions for yourself or your partner, as well as the time, day and even the environment. If you require minimum body movement, consider self-stimulation while lying beside your partner. Sex toys and lubricants also work wonders, whether you have a partner or are alone.

If being spontaneous is not in the plan, consider making intimate dates either with a partner or yourself. Above all, keep the communication open with your partner. It’s crucial that you understand each other and have realistic expectations without judgment.

If you’re wondering if you can share intimacy without the orgasm, the answer is yes! Orgasm is only one aspect of sexual intimacy, and you can connect and feel great in plenty of other ways.

There comes a time in many couple relationships when sexual intercourse isn’t an option, due to physical, emotional or mental health. When this occurs, there are many alternatives to consider. Make a list for yourself, considering your unique needs, which will support and care for your pained body no matter what stage in life you are in. 

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

Studying Natural Opioids Could Lead to New Non-Addictive Analgesics

By Dr. John Streicher, University of Arizona

Opioid drugs such as morphine and fentanyl are like the two-faced Roman god Janus: The kindly face delivers pain relief to millions of sufferers, while the grim face drives an opioid abuse and overdose crisis that claimed nearly 70,000 lives in the U.S. in 2020 alone.

Scientists like me who study pain and opioids have been seeking a way to separate these two seemingly inseparable faces of opioids. Researchers are trying to design drugs that deliver effective pain relief without the risk of side effects, including addiction and overdose.

One possible path to achieving that goal lies in understanding the molecular pathways opioids use to carry out their effects in your body.

What Are Natural Opioids?

The opioid system in your body is a set of neurotransmitters your brain naturally produces that enable communication between neurons and activate protein receptors. These neurotransmitters include small protein-like molecules like enkephalins and endorphins. These molecules regulate a tremendous number of functions in your body, including pain, pleasure, memory, the movements of your digestive system, and more.

Opioid neurotransmitters activate receptors that are located in a lot of places in your body, including pain centers in your spinal cord and brain, reward and pleasure centers in your brain, and throughout the neurons in your gut. Normally, opioid neurotransmitters are released in only small quantities in these exact locations, so your body can use this system in a balanced way to regulate itself.

The problem comes when you take an opioid drug like morphine or fentanyl, especially at high doses, for a long time. These drugs travel through the bloodstream and can activate every opioid receptor in your body. You’ll get pain relief through the pain centers in your spinal cord and brain. But you’ll also get a euphoric high when those drugs hit your brain’s reward and pleasure centers, and that could lead to addiction with repeated use. When the drug hits your gut, you may develop constipation, along with other common opioid side effects.

Targeting Opioid Signals

How can scientists design opioid drugs that won’t cause side effects?

One approach my research team and I take is to understand how cells respond when they receive a message from an opioid neurotransmitter. Neuroscientists call this process opioid receptor signal transduction. Just as neurotransmitters are a communication network within your brain, each neuron also has a communication network that connects receptors to proteins within the neuron.

When these connections are made, they trigger specific effects like pain relief. So, after a natural opioid neurotransmitter or a synthetic opioid drug activates an opioid receptor, it activates proteins within the cell that carry out the effects of the neurotransmitter or the drug.

Opioid signal transduction is complex, and scientists are just starting to figure out how it works. However, one thing is clear: Not every protein involved in this process does the same thing. Some are more important for pain relief, while some are more important for side effects like respiratory depression or the decrease in breathing rate that makes overdoses fatal.

So what if we target the “good” signals like pain relief and avoid the “bad” signals that lead to addiction and death? Researchers are tackling this idea in different ways. In fact, in 2020, the U.S. Food and Drug Administration approved the first opioid drug based on this idea, oliceridine, as a painkiller with fewer respiratory side effects.

However, relying on just one drug has downsides. That drug might not work well for all people or for all types of pain. It could also have other side effects that show up only later on. Plenty of options are needed to treat all patients in need.

Inhibiting a Protein Relieves Pain

My research team is targeting a protein called Heat shock protein 90, or Hsp90, which has many functions inside each cell. Hsp90 has been a hot target in the cancer field for years, with researchers developing Hsp90 inhibitors as a treatment for many cancer types.

We’ve found that Hsp90 is also really important in regulating opioid signal transduction. Blocking Hsp90 in the brain blocked opioid pain relief. However, blocking Hsp90 in the spinal cord increased opioid pain relief. Our recently published work uncovered more details on exactly how inhibiting Hsp90 leads to increased pain relief in the spinal cord.

Our work shows that manipulating opioid signaling through Hsp90 offers a path forward to improve opioid drugs. Taking an Hsp90 inhibitor that targets the spinal cord along with an opioid drug could improve the pain relief the opioid provides while decreasing its side effects. With improved pain relief, you can take fewer opioids and reduce your risk of addiction. We are currently developing a new generation of Hsp90 inhibitors that could help realize this goal.

There may be many paths to developing an improved opioid drug without the burdensome side effects of current drugs like morphine and fentanyl. Separating the kindly and grim faces of the opioid Janus could help provide the pain relief we need without addiction and overdose. 

John Streicher, PhD, is an Associate Professor in the Department of Pharmacology at the University of Arizona. Dr. Streicher has published over 70 peer-reviewed articles and is engaged in numerous drug discovery campaigns to create new analgesics. He receives funding from the National Institutes of Health, the Arizona Biomedical Research Commission, the Flinn Foundation, and the University of Arizona.

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

My Life Is on the Line Due to Rx Opioid Shortages

By Christine Kucera, Guest Columnist

On May 24, I had my regularly scheduled pain management appointment. The prescription for my normal regimen of 10mg oxycodone was sent electronically to my local CVS pharmacy. About an hour later, I received a text from CVS saying they received the prescription from my doctor.

I followed up later through their automated system. That is the moment of shocking revelation when I learned that my prescription was not going to be filled on time, and that it may not be ready until a week after my fill date.

Utterly panicked, heart racing, thinking and speaking a mile a minute, I contacted the pharmacy. They confirmed they were out of 10mg oxycodone tablets.

“What am I supposed to do?” I asked. A woman who I don’t know replied that I should try contacting other pharmacies.

Really? I can’t do that. Pharmacies won’t tell me, the patient, if they have a supply of a controlled substance. So she looked it up and said it looks like “X” pharmacy has it and that I should have my doctor send the prescription there. Unfortunately, by the time my provider received the message, it was too late.

I made multiple calls to another pharmacy and they were extremely rude. I called my pharmacy again. This time I spoke with a pharmacist that knew me. He was very understanding, as we discussed what to do next.

CHRISTINE KUCERA

We came up with a plan. He said to have my doctor send him a prescription for 5mg oxycodone. I immediately emailed my provider about the shortage and asked him to send a new prescription for 5mg, since they were out of 10mg tablets.

It was a very long night and I was extremely anxious waiting for a reply from my provider. As a long-term opioid patient of 30 years with intractable pain, I’ve been through the unimaginable, especially after the CDC published its first opioid guideline. Since 2016, I’ve been force tapered to suboptimal treatment levels, denied pain medication during multiple hospitalizations, and told to take Tylenol.

A surgeon even used prescription fentanyl on me during an interventional procedure after being told it doesn’t work on me – leaving me awake and screaming during the procedure. That’s just to name a few examples. Believe me, there are many more.

My thoughts are racing out of control. I can’t do this anymore. I can’t live life with unrelenting, unmanaged pain all day, every day. I’m barely holding on now, trying hard not give up hope. It’s not easy living in a body that’s under assault from an invisible invader, leaving my entire body riddled with rare diseases, along with severe bone, nerve, connective tissue and organ pain.

As a person with severe medically induced PTSD, I can fully recall all of the previous times I was forced off my managed regime of opiate medication. This time it’s going to be at the hands of the DEA, which has intentionally created shortages of oxycodone.

Next day arrives, a new prescription for 5mg is sent and I sigh with relief. It was short lived. Another pharmacist said my insurance company won’t cover the 5mg substitute without prior authorization. Completely losing control of my emotions, I asked why do I need another prior authorization?  My daily limit of 90 morphine milligram equivalents (MME) didn’t change, just the dose of the tablets

“It’s because of daily quantity limits,” the pharmacist replied.

Are you freaking serious?  I’m out of oxycodone as of today and you’re saying I can’t have 2 weeks of a substitute because there is no supply anywhere of 10mg and my insurance has quantity limits on 5mg doses?  I was angry and upset. This is so wrong! What am I supposed to do?

To that, the pharmacist says, “You can pay out of pocket.”

I didn’t have a choice, although I knew what happens from paying out of pocket with cash and sending prescriptions to new pharmacies. Those are red flags for prescription drug monitoring programs (PDMPs).

What’s next CDC and DEA? You’ve fabricated the great Opioid Lie and created policies that affect all pain care in all settings. Created new burdens for disabled and chronically ill patients. Created an opioid guideline that doesn’t allow for individualized treatment and places limits on prescriptions. You’ve shackled doctors with no options but to provide inadequate pain care or abandon patients altogether.

Now patients and their providers are having to deal with DEA created shortages of essential medicines. This has got to stop! Pain patients have never been the driver behind the overdose crisis. Anti-opioid prohibition policies are harming, torturing and killing U.S. citizens.

What do I do? There are no protections or even a set of procedures in place to assist patients and providers when there are shortages of controlled substances. It really is a nightmare situation. I feel helpless. The shortage is not my fault, the restrictions have gone too far, and my life is on the line.

Christine Kucera lives with psoriatic arthritis, spondyloarthropy, spondylitis, polyarthritis, sacroiliitis, degenerative joint disease, dermatomyositis, mixed connective tissue disease, spinal radiculopathy, hypoparathyroidism, rare endocrine tumors, psoriasis, endometriosis stage IV, pelvic adhesive disease, and other painful conditions. 

Prior to becoming disabled, Christine was a healthcare research systems developer and analyst for federally funded CMS, AHRQ, and NIH grants and programs. 

Do you have a “My Story” to share? Pain News Network invites other readers to share their stories about living with pain and treating it. We are particularly interested in your experiences dealing with current drug shortages. Send your stories to editor@painnewsnetwork.org.

Denials of Health Insurance Claims Are Rising

By Elisabeth Rosenthal, KFF Health News

Millions of Americans in the past few years have run into this experience: filing a health care insurance claim that once might have been paid immediately but instead is just as quickly denied.

If the experience and the insurer’s explanation often seem arbitrary and absurd, that might be because companies appear increasingly likely to employ computer algorithms or people with little relevant experience to issue rapid-fire denials of claims — sometimes bundles at a time — without reviewing the patient’s medical chart. A job title at one company was “denial nurse.”

It’s a handy way for insurers to keep revenue high — and just the sort of thing that provisions of the Affordable Care Act (ACA) were meant to prevent. Because the law prohibited insurers from deploying previously profit-protecting measures such as refusing to cover patients with preexisting conditions, the authors worried that insurers would compensate by increasing the number of denials.

And so, the law tasked the Department of Health and Human Services with monitoring denials both by health plans on the Obamacare marketplace and those offered through employers and insurers. It hasn’t fulfilled that assignment. Thus, denials have become another predictable, miserable part of the patient experience, with countless Americans unjustly being forced to pay out-of-pocket or, faced with that prospect, forgoing needed medical help.

A recent KFF study of ACA plans found that even when patients received care from in-network physicians — doctors and hospitals approved by these same insurers — the companies in 2021 nonetheless denied, on average, 17% of claims. One insurer denied 49% of claims in 2021; another’s turndowns hit an astonishing 80% in 2020. Despite the potentially dire impact that denials have on patients’ health or finances, data shows that people appeal only once in every 500 cases.

Sometimes, the insurers’ denials defy not just medical standards of care but also plain old human logic. Here is a sampling collected for the KFF Health News-NPR “Bill of the Month” joint project.

• Dean Peterson of Los Angeles said he was “shocked” when payment was denied for a heart procedure to treat an arrhythmia, which had caused him to faint with a heart rate of 300 beats per minute. After all, he had the insurer’s preapproval for the expensive ($143,206) intervention. More confusing still, the denial letter said the claim had been rejected because he had “asked for coverage for injections into nerves in your spine” (he hadn’t) that were “not medically needed.” Months later, after dozens of calls and a patient advocate’s assistance, the situation is still not resolved.

• An insurer’s letter was sent directly to a newborn child denying coverage for his fourth day in a neonatal intensive care unit. “You are drinking from a bottle,” the denial notification said, and “you are breathing on your own.” If only the baby could read.

• Deirdre O’Reilly’s college-age son, suffering a life-threatening anaphylactic allergic reaction, was saved by epinephrine shots and steroids administered intravenously in a hospital emergency room. His mother, utterly relieved by that news, was less pleased to be informed by the family’s insurer that the treatment was “not medically necessary.”

As it happens, O’Reilly is an intensive-care physician at the University of Vermont. “The worst part was not the money we owed,” she said of the $4,792 bill. “The worst part was that the denial letters made no sense — mostly pages of gobbledygook.” She has filed two appeals, so far without success.

Some denials are, of course, well considered, and some insurers deny only 2% of claims, the KFF study found. But the increase in denials, and the often strange rationales offered, might be explained, in part, by a ProPublica investigation of Cigna — an insurance giant, with 170 million customers worldwide.

ProPublica’s investigation, published in March, found that an automated system, called PXDX, allowed Cigna medical reviewers to sign off on 50 charts in 10 seconds, presumably without examining the patients’ records.

Decades ago, insurers’ reviews were reserved for a tiny fraction of expensive treatments to make sure providers were not ordering with an eye on profit instead of patient needs.

These reviews — and the denials — have now trickled down to the most mundane medical interventions and needs, including things such as asthma inhalers or the heart medicine that a patient has been on for months or years. What’s approved or denied can be based on an insurer’s shifting contracts with drug and device manufacturers rather than optimal patient treatment.

Automation makes reviews cheap and easy. A 2020 study estimated that the automated processing of claims saves U.S. insurers more than $11 billion annually.

But challenging a denial can take hours of patients’ and doctors’ time. Many people don’t have the knowledge or stamina to take on the task, unless the bill is especially large or the treatment obviously lifesaving. And the process for larger claims is often fabulously complicated.

The Affordable Care Act clearly stated that HHS “shall” collect the data on denials from private health insurers and group health plans and is supposed to make that information publicly available. (Who would choose a plan that denied half of patients’ claims?) The data is also supposed to be available to state insurance commissioners, who share with HHS the duties of oversight and trying to curb abuse.

To date, such information-gathering has been haphazard and limited to a small subset of plans, and the data isn’t audited to ensure it is complete, according to Karen Pollitz, a senior fellow at KFF and one of the authors of the KFF study. Federal oversight and enforcement based on the data are, therefore, more or less nonexistent.

HHS did not respond to requests for comment for this article.

The government has the power and duty to end the fire hose of reckless denials harming patients financially and medically. Thirteen years after the passage of the ACA, perhaps it is time for the mandated investigation and enforcement to begin.

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

Pain Care Should Be Individualized, Without Interference from Others

By Barby Ingle, PNN Columnist 

Trigeminal neuralgia, arachnoiditis, Ehlers Danlos syndrome and Complex Regional Pain Syndrome (CRPS) have all been called the “suicide disease” – the worst pain possible. But saying which disease or condition causes the most pain is subjective because people experience pain differently.  

• According to U.S. News & World Report, passing a kidney stone is one of the most painful medical conditions you can have.  

• News Medical Life Sciences lists sickle cell disease as one of the 20 most painful chronic conditions, with episodes of pain occurring when sickle-shaped red blood cells block small blood vessels.  

• McGill University in Canada has a “pain index” based on a questionnaire that asks people to describe what kind of pain they experience. The index consistently lists CRPS as the worst known pain to humans.

• Verywell Health reports that fibromyalgia is one of the most common pain conditions, affecting 10 million people in the U.S. and causing widespread body pain, sleep problems, fatigue and distress.  

After living with multiple pain conditions for over 20 years and speaking with tens of thousands of other patients, I no longer believe it matters which type of pain a person has or who has the most pain. We all experience pain. How much pain we feel depends on the individual and a host of other factors, such as genetics, life experiences, and whether effective treatment is available and affordable. That is what matters.

When we do not manage pain effectively, suicides go up. We also see drug abuse and misuse rise. According to a report by the National Institute on Drug Abuse, about 5% to 7% of drug overdose deaths in the U.S. are intentional suicides. Many of those deaths are pain patients.

Since 2011, we have seen a steady decrease in opioid prescribing. Be it acute or chronic, providers are weary of prescribing opioids for pain. It’s not because opioids don’t work. More often than not, the reason they stop prescribing is because they have invested so much into becoming a provider (education, cost, time, family and social connections) that they are now at risk of losing due to laws and medical guidelines based on misleading information about opioids. 

We need to get away from the generalities of treating pain and into individualized patient care. It may or may not involve pain medication, surgery, implants, cognitive therapy and other treatments. For those who have the audacity to say that anyone else should remain in pain because you are not comfortable with their form of treatment -- shame on you.

I have chosen not to use opioids for over 10 years because I have other options that work for me. I want all people to get whatever treatment they need to control their pain. It will be different for each of us and whatever condition or comorbidities we live with. We all need and deserve to get the care we choose after careful consideration, research and discussions with our providers. Laws and guidelines should not be used to take away medications that have been available since the beginning of time.

At a recent pain education event I attended, I heard the argument that there were no long-term studies on the use of opioids for pain. But there are millions of patients who have taken opioids safely for years who will tell you otherwise. Opioids actually gave them more life, because they were able to work, exercise and function when their pain was properly managed.

As a pain patient myself, I want the freedom to do what is best for me. I am currently working on getting access to ketamine infusions again after my ketamine clinic closed down. I want that same right in selecting treatment to be available to others. It should be left to patients and their providers to decide on treatment, without interference from others.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.   

The Fading Power of the White Coat

By Carol Levy, PNN Columnist

I wrote a column in 2018 about the arrogance and poor listening skills of some doctors ("Tyranny of the White Coat”). I ended it with these words: “It’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting their patient.”

Most physicians see the exam room as a teeter-totter; the doctor sitting high up on one side and the patient below them on the ground. That is often still the case, but I notice when I go to blogs written by doctors (such as KevinMD), that they often write about the loss of respect they find almost everywhere.

Doctors no longer have the “power of the white coat.” In public settings such as hospitals and restaurants, the staff no longer looks at them in awe or bow down to their titles: “Yes doctor, your table is waiting for you.”

I understand the sadness from losing status as the top gun, but I thought most doctors went into medicine to help their patients, not for the superiority their degree gives them. I thought the work they put in at medical school was to learn their craft, not to use as a banner of privilege: “I spent years in school and had to work very, very hard to get where I am. Therefore, I deserve to be looked at as superior.”  

I also go to blogs written by patients, many with chronic pain, and I read the opposite: “How dare these 'doctors' think they're so much better than me? I shouldn't have to be obeisant to them, yet that's what they want from me.”

What if we didn't have the hierarchy of the exam room? What if we were able to come together as patients and doctors, to have a round table or focus group where we could talk freely? How educational that would be, for both sides.

We could then look at doctors as our equals and they could see us in the same way -- not someone to be talked down to. Too many doctors seem to believe we are uninformed, misinformed or just ignorant, and need to be spoken to like a 12-year-old.

We might then see the doctor as a person, someone with more knowledge and experience with our diseases and disorders. Someone who can be a helper, not a protagonist. We could then see them as teachers, which in many ways they are.

What a great appointment that would be. We’d smile at each other and see one another as human.

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.

Chatbot ‘Doctor’ Preferred Over Real Ones

By Crystal Lindell, PNN Columnist

Would you rather get your medical advice from a human physician or a chatbot powered by artificial intelligence?

According to an unusual study recently published in JAMA, you’d be better off listening to the chatbot, which gave advice that was rated significantly better both in quality and empathy.  

A team of researchers asked the chatbot -- called ChatGPT – 195 hypothetical questions a patient might ask that were posted online in a Reddit forum called "Ask a Doctor."  A team of healthcare providers then compared the chatbot’s responses to those posted by actual physicians in the same forum.

The responses from ChatGPT were the clear winners. The evaluators preferred the chatbot responses over the physicians’ answers about 79% of the time. The average rating for the chatbot was "better than good," while the physicians overall were given a lackluster grade of "acceptable response."

The evaluators also gave the ChatGPT high marks for empathy, while the physicians’ responses were rated as only “slightly empathetic.”

One of the hypothetical questions involved a patient who accidentally swallowed a toothpick and wanted to know if they were at risk of dying. Here’s how the chatbot and a physician responded:

Physician Response:

If you've surpassed 2-6 (hours), chances are they've passed into your intestines. Which means it can't be retrieved easily.

Many people can swallow razorblades and toothpicks without issues. In case you develop stomach ache, then don't hesitate seeking out an emergency room, and remember to point out the swallowed tooth pick. For now, they won't be doing much.

Chatbot Response:

It's natural to be concerned if you have ingested a foreign object, but in this case, it is highly unlikely that the toothpick you swallowed will cause you any serious harm.

Toothpicks are made of wood, which is not toxic and will not cause poisoning. However, it is possible for a toothpick to cause injury if it becomes stuck in the throat or if it punctures the digestive tract. However, this is unlikely to happen with a dull, cooked toothpick that is only 2 cm long.

If you are experiencing any discomfort or symptoms such as abdominal pain, difficulty swallowing, or vomiting, it is important to contact a healthcare provider for further evaluation. However, if you are not experiencing any symptoms, it is safe to assume that the toothpick has passed through your digestive system, and you do not need to be concerned.

It's always a good idea to be cautious when consuming food and to remove any foreign objects before eating. It's understandable that you may be feeling paranoid, but try not to worry too much. It is highly unlikely that the toothpick will cause you any serious harm.

Which answer would you rather get as a patient? The evaluators preferred the chatbot’s response to the toothpick question, as they did for other questions about a head injury, a lump possibly being cancerous, and if getting bleach in your eye might cause blindness. The chatbot response to those questions also got high scores for empathy.

As a chronic pain patient, I have to admit I felt a little smug when I first saw the headlines about this research. My initial thought was, of course, the chatbot was more empathetic than the doctors! Doctors are often mean, rude and dismissive. I even wrote a column about using a weird trick to manage their egos.

Is this the beginning of the end for human doctors? The short answer is: No. This was a very narrow study with a number of limitations. The authors said they were only trying to look into the possibility of physicians using artificial intelligence (AI) to essentially ghostwrite responses to patients.  

“Chatbots could assist clinicians when messaging with patients, by drafting a message based on a patient’s query for physicians or support staff to edit,” they said. “Such an AI-assisted approach could unlock untapped productivity so that clinical staff can use the time-savings for more complex tasks, resulting in more consistent responses and helping staff improve their overall communication skills by reviewing and modifying AI-written drafts.”

The possibilities for using AI in medical settings are only just emerging, and it could radically change how we think of healthcare and how doctors think of us.

One thing that might improve is how doctors and patients communicate. I know doctors are capable of giving more empathetic answers on their own. The problem is, in the United States at least, they usually just don’t have the time to do so. If AI can help, we should let it.  

However, it should be noted that several authors of the study, which was led by researchers at the University of California San Diego, disclosed ties to the artificial intelligence industry, which means they may financially benefit from any attempts to sell AI to medical professionals.

Also, as the researchers acknowledge, the study doesn’t prove that chatbots are better doctors than actual doctors, just that their answers were better. Physicians would likely respond to medical questions differently in an office setting, as opposed to an online post.

Researchers also did not assess the chatbot responses for accuracy — which is a pretty big deal when it comes to medical care. It’s one thing to write an empathetic reply, it’s another to correctly diagnose and decide on a treatment.

That said, when comparing the various responses, the chatbot did seem to give similar advice as the doctors, which makes me think they were mostly accurate. That may not sound great, but consider how often doctors are wrong. Medical errors are one the leading causes of death in the U.S.

AI technology is rapidly improving, and it’s impossible to predict what it will be capable of in the coming years. But I do believe it’s going to radically change many aspects of our lives, including healthcare. Hopefully, it makes it better. But at this point, I’ll settle for not making it worse.  

Crystal Lindell is a freelance writer who lives in Illinois. After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome. She and her fiancé have 3 cats: Princess Dee, Basil, and Goose. She enjoys the Marvel Cinematic Universe, Taylor Swift Easter eggs, and playing the daily word game Semantle. 

Should I Laugh or Should I Cry?

By Mia Maysack, PNN Columnist

Right now, I’m having one of those moments when the pain level is so high, it's almost unbelievable. It made me remember when a fellow chronically ill friend shared a story about her time in a grocery store.  She said that it felt as though a knife was cutting her open, all while she was just attempting to buy a few things.

Her response to this experience was laughter!

Perhaps you've heard the saying, "Should I laugh or should I cry?" Personally, I feel as though there's something to that. As I write this, I'm turning to the written word as my savior and deliverer from the wretched flare I'm in the midst of. I can barely see, let alone keep thoughts straight in my mind. But I'm choosing to smile, at least on the inside, because I'm thinking of my friend.

She said she laughed because it was comical in that moment -- her essentially feeling like the walking dead but having to function normally in a public place. No one else in the store could possibly know the inner crisis she was having. 

I can attest to this sort of thing making me feel a little crazy. Perhaps what helps to push us toward the bright side is the madness that's produced along the way. 

It’s been said that laughter is the best medicine. I've yet to have an ailment cured by laughing, but it's important to remember that despite our health or hardships, we possess a playful side. We are more than just a condition or diagnosis, there are other aspects of our identities. We're not what has occurred to us; what we are becoming is a result of our choice.

I'm choosing to laugh about the fact I've been attempting to get in touch with a provider, but cannot seem to get a call back. A previous appointment with the provider was so draining it left me feeling worse than I did upon arrival. It's all a reminder of how much it took to reach out to the provider in the first place, and the countless other let downs when the healthcare system falls short, which is most of the time. Healthcare is a joke and patients are often the punchline.

A common response to a person who is struggling is to advise them to seek help. That is a valid suggestion, but if “help” is the remedy, then it must be available and within reach.

We need to see what we need within ourselves, not to solely exist, but to excel in our experiences -- as opposed being dependent on systems that don’t serve our interests.

An example:  Recently when the exact opposite thing I felt like doing was grinning, I beamed in an effort to trick my brain into stimulating an increase in endorphins. This technique is readily available to me at any point, plus it’s free and doesn’t cause any adverse side effects! 

Laughter is another great way to assist in boosting mood, as is exercise to any extent that’s doable. The idea is to consciously work to counteract the pain signals that are firing as best we can, while living with unmanageable pain of one sort or another. 

Presently, I am choosing to be mentally mindful and to rejoice in breathing. This is how I prevail. I also find solace in knowing that what I’ve already endured will give me the strength I’ll need to face whatever is coming. Until then, I’ll strive to greet every moment that tests me with a smile. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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. 

How to Manage Dental Care with Chronic Pain

By Dr. Michael Cooney, Guest Columnist

More than 75 percent of the chronic pain patients we have treated also suffer from chronic dental issues. Apprehension about dental care from our neuropathic pain community is certainly understandable. But bypassing care of your teeth, gums and mouth can allow potential problems to grow and ultimately become more painful when treatment is no longer an option. It then becomes a necessity.

I sought out the advice of a dentist who specializes in treating people with chronic pain conditions and asked him for dental hygiene maintenance and treatment guidance. Here’s what he told me.

Do I Need a Special Dentist?

First, take time to perform due diligence in locating a dentist who treats patients with chronic nerve pain and understands your special needs. Once you’ve found one, ask about specific tools, techniques and anesthesia options to help minimize and control any potential pain before and after your dental treatment.

One unfortunate byproduct of chronic pain management is the common use of medications. Be sure to address your medication use with the dentist beyond just listing them on your intake forms. These medications commonly contribute to xerostomia (dry mouth). Without adequate saliva, tooth decay and gum disease are more likely to flourish, and also cause:

• Interference with normal swallowing

• Taste disorders (dysgeusia)

• Speech difficulty

• Inability to maintain oral tissue integrity

• Mucositis (chronic mouth irritation and inflammation)

• Dental decay

• Erosion

To combat dry mouth, hydrate your mouth by sipping water throughout the day. Chewing sugarless gum can also help. You may also wish to use a moisturizing mouth spray.

Periodontal Disease

Over time, gums can pull away from the teeth and form pockets which become infected. The body’s immune system fights the bacteria as plaque spreads and grows below the gum line. Bacterial toxins and the body’s natural response to infection start to break down the bone and connective tissue that hold teeth in place.

If not treated, the bones, gums and tissue that support the teeth are destroyed, requiring the diseased teeth to be extracted.

Understandably, people with chronic pain want to avoid potential pain triggers, including during dental visits. So when tooth or gum pain or sensitivity presents, it is often in the latter stages of decay when the tooth cannot be salvaged. The unfortunate result is the need to remove the tooth.

Best Defense Is a Strong Offense

At home, brush your teeth a minimum of twice daily and floss. Yes, we know flossing is gross, but isn’t it better to get that stuff out of your mouth and into the garbage?

Give your tongue a good brushing to remove bacteria that leads to plaque and chronic bad breath. Twice-yearly teeth cleanings and exams are also necessary to prevent and offset any issues before they become more serious and require more invasive treatment.

Before your visit, talk with your treating physician to determine any special protocol or medication requirements needed. Be sure that your doctor and dentist are in touch to fully understand the nature of your care needs.

After cleaning or dental treatment, allow extra time to rest and recover. Eat soft food for a few days and avoid foods (meats, popcorn, hard candy) that can potentially become lodged in those clean and disease-free pearly whites!

Preventing dental disease can improve holistic health, allowing your immune system to perform at its optimal level and provide the highest quality of daily life possible.

Michael Cooney, DC, is Clinical Director of Calmare NJ.  He is one of the original Calmare certified providers in the U.S. to use scrambler therapy to significantly reduce or alleviate treatment-resistant neuropathic pain.

Cooney specializes in treating children, adults and seniors battling medication and treatment-resistant neuropathy due to fibromyalgia, CRPS / RSD, diabetes, shingles (PHN), post-surgical pain and pain after chemotherapy (CIPN).

Retraining Your Brain Can Reduce Pain

By Dr. Joshua Pate, University of Technology Sydney

For every feeling we experience, there is a lot of complex biology going on underneath our skin.

Pain involves our whole body. When faced with possible threats, the feeling of pain develops in a split second and can help us to “detect and protect.” But over time, our nerve cells can become over-sensitized. This means they can react more strongly and easily to something that normally wouldn’t hurt or would hurt less. This is called sensitisation.

Sensitisation can affect anyone, but some people may be more prone to it than others due to possible genetic factors, environmental factors or previous experiences. Sensitisation can contribute to chronic pain conditions like fibromyalgia, irritable bowel syndrome, migraine or low back pain.

But it might be possible to retrain our brains to manage or even reduce pain.

Our body senses possible threats via nerve endings called nociceptors. We can think of these like a microphones transmitting the word “danger” through wires (nerves and the spinal cord) up to a speaker (the brain). If you sprain your ankle, a range of tiny chemical reactions start there.

When sensitisation happens in a sore body part, it’s like more microphones join in over a period of weeks or months. Now the messages can be transmitted up the wire more efficiently. The volume of the danger message gets turned way up.

Then, in the spinal cord, chemical reactions and the number of receptors there also adapt to this new demand. The more messages coming up, the more reactions triggered and the louder the messages sent on to the brain.

And sensitisation doesn’t always stop there. The brain can also crank the volume up by making use of more wires in the spinal cord that reach the speaker. This is one of the proposed mechanisms of central sensitisation. As time ticks on, a sensitised nervous system will create more and more feelings of pain, seemingly regardless of the amount of bodily damage at the initial site of pain.

When we are sensitised, we may experience pain that is out of proportion to the actual damage (hyperalgesia), pain that spreads to other areas of the body (referred pain), pain that lasts a long time (chronic or persistent pain), or pain triggered by harmless things like touch, pressure or temperature (allodynia).

Because pain is a biopsychosocial experience (biological and psychological and social), we may also feel other symptoms like fatigue, mood changes, sleep problems or difficulty concentrating.

Neuroplasticity

Around the clock, our bodies and brain are constantly changing and adapting. Neuroplasticity is when the brain changes in response to experiences, good or bad.

Pain science research suggests we may be able to retrain ourselves to improve wellbeing and take advantage of neuroplasticity. There are some promising approaches that target the mechanisms behind sensitisation and aim to reverse them.

One example is graded motor imagery. This technique uses mental and physical exercises like identifying left and right limbs, imagery and mirror box therapy. It has been tested for conditions like complex regional pain syndrome (a condition that causes severe pain and swelling in a limb after an injury or surgery) and in phantom limb pain after amputation.

Very gradual exposure to increasing stimuli may be behind these positive effects on a sensitised nervous system. While results are promising, more research is needed to confirm its benefits and better understand how it works. The same possible mechanisms of graded exposure underpin some recently developed apps for sufferers.

Exercise can also retrain the nervous system. Regular physical activity can decrease the sensitivity of our nervous system by changing processes at a cellular level, seemingly re-calibrating danger message transmission. Importantly, exercise doesn’t have to be high intensity or involve going to the gym. Low-impact activities such as walking, swimming, or yoga can be effective in reducing nervous system sensitivity, possibly by providing new evidence of perceived safety.

Researchers are exploring whether learning about the science of pain and changing the way we think about it may foster self-management skills, like pacing activities and graded exposure to things that have been painful in the past. Understanding how pain is felt and why we feel it can help improve function, reduce fear and lower anxiety.

Don’t Go It Alone

If you have chronic or severe pain that interferes with your daily life, you should consult a health professional like a doctor and/or a pain specialist who can diagnose your condition and prescribe appropriate active treatments.

In Australia, a range of multidisciplinary pain clinics offer physical therapies like exercise, psychological therapies like mindfulness and cognitive behavioural therapy. Experts can also help you make lifestyle changes to improve sleep and diet to manage and reduce pain. A multi-pronged approach makes the most sense given the complexity of the underlying biology.

Education could help develop pain literacy and healthy habits to prevent sensitisation, even from a young age. Resources, such as children’s books, videos, and board games, are being developed and tested to improve consumer and community understanding.

Pain is not a feeling anyone should have to suffer in silence or endure alone.

Joshua Pate, PhD, is a Senior Lecturer in Physiotherapy at University of Technology Sydney. He is on the Scientific Program Committee for the Australian Pain Society.

Josh’s research focus is on childhood pain. He is the author of a series of five books designed to help children learn and talk about pain, called Zoe and Zak's Pain Hacks.

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

How Realistic Is a Possible Treatment for Hypermobile EDS?

By Crystal Lindell, PNN Columnist

Ever since I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) back in 2018, I’ve spent countless hours contemplating what my life would be like if there was an effective treatment.

Last week, Tulane University School of Medicine pushed that question to the forefront. They announced that they may have found a potential cause of hEDS and hypermobility in general. They also theorized a potential treatment.

Ehlers-Danlos Syndrome (EDS) creates fragile connective tissue, which can cause a range of other symptoms including joint pain, digestive trouble, migraines and more.  

Tulane researchers proposed that a variation of the MTHFR gene that causes a deficiency of folate – the natural form of vitamin B9 – could hold the key to hypermobility and a range of connective tissue disorders such as EDS. As for treatment, they hypothesized that methylated folate — which is folate that is already processed — could be a possible treatment for the myofascial pain that’s common for hypermobile patients. They published these preliminary findings in the journal Heliyon.

First, it should be noted that none of this was based on a clinical study of patients. Rather, it’s a proposal that they believe should be researched further. As such, there’s been some valid criticism of Tulane’s announcement from the EDS community. Was it premature? Will any of this hold up in a peer-reviewed study? Or are they just giving false hope to the thousands of EDS patients desperate for some good news?

As an EDS patient myself, I understand those concerns and I very much sympathize with them. Many of us have spent too much time being dismissed by doctors, and too much money on treatments that don’t end up working.

Unfortunately, I think we’re going to have to live in the uncertainty right now. We won’t know if this is a viable option until we get a peer-reviewed study. But I am glad that they are looking into this and sharing these types of updates as the research progresses. I’d rather be informed along the way than only be told at the end of the process.

What Would a Treatment Mean for Patients?

What if their theory is correct though? Is that a good thing? I have to confess, my feelings about it are complicated.

The thing about EDS is that it’s different for everyone. As it stands, most doctors treat the symptoms, which, as mentioned above, vary widely. For me, the most debilitating one is intercostal neuralgia — which is not a type of myofascial pain. As such, it seems unlikely that methylated folate would do much to treat it.

But hey, maybe methylated folate is more of a preventative treatment? That alone would be an incredible advancement for hEDS patients.

The question is, would this treatment impact anything else? Do they know if it would only address myofascial pain? Or could it also help with other symptoms? And would that even be a good thing if it did?

EDS touches every aspect of my body and even most aspects of my personality. There’s the velvety skin everyone comments on when they shake my hand. And the constant comments about how I look for my age, which also seems to be related to how EDS impacts my skin. Would methylated folate treatment change that at all? How so? And what would I end up looking like?

The most well-known EDS symptom is probably loose joints, which means they easily overextend. For me, that’s meant a lifetime of sprained ankles and joint pain. But again, what happens if methylated folate changes that? My joints may be loose, but they’re the only ones I’ve ever known. Would stiffening them up actually help me at this point? Or would I have to re-learn how to move my own body?

What about my mind? EDS patients have higher than average rates of neurodivergence like autism and ADHD. They also have higher rates of mental health issues like depression and anxiety. Could this treatment change our brains too? Or, if not, what if they eventually find a treatment that does? Would it alter aspects of people’s personalities?

There’s also the more logistical issue of EDS as a name at all. According to the National Library of Medicine, a syndrome refers to a group of symptoms and physical findings without a direct cause. Once a cause is found, the symptoms are typically renamed as a “disease.” So, if the researchers at Tulane did find a cause, what do we have? Ehlers-Danlos disease? EDD?

One thing we do know is that EDS and hypermobility cause immeasurable pain and suffering for a lot of people, so we do need more research into potential treatments. Time will tell if folate treatment proves effective or not, but either way, I hope that there are a lot more potential treatments coming.

Crystal Lindell is a freelance writer who lives in Illinois. After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome. She and her fiancé have 3 cats: Princess Dee, Basil, and Goose. She enjoys the Marvel Cinematic Universe, Taylor Swift Easter eggs, and playing the daily word game Semantle. 

We Need Better Treatments for Long Covid, Fibromyalgia, Chronic Fatigue and More

By Dr. Seth Lederman

Headlines about COVID have faded, and the United States will soon turn the page on public emergency status for the pandemic. The virus no longer dominates most of our lives, yet there are still thousands of new hospitalizations daily and an estimated 15 million Americans currently suffer from Long COVID.

The deep impact of long-haul cases has contributed to a surge of patients with disabling conditions, who are often misdiagnosed or treated ineffectively. More than one in five people infected with COVID-19 develop Long COVID and its constellation of physical and neurological symptoms. The persistent pain, fatigue, sleep problems and brain fog are similar to two other post-infectious syndromes, fibromyalgia and chronic fatigue syndrome (CFS/ME).

A recent study of both conditions and Long COVID documented that the physical and cognitive impairments of Long COVID were exacerbated in people previously diagnosed with CFS/ME or fibromyalgia. These types of chronic overlapping pain conditions have long been recognized by the National Institutes of Health (NIH), and the president’s National Research Action Plan on Long COVID similarly makes the connection between CFS/ME and Long COVID.

More than 50 million people struggle with these neurological illnesses every year in our country, and the burden of their chronic diseases comes at incalculable personal harm, along with billions of dollars in healthcare costs and lost productivity. 

There is one common denominator among all these unrelenting illnesses: the human brain. Physicians like me who study infectious and neurological diseases know that getting a drug’s active ingredients into the brain is not easy. Unlike biologic drugs, which are usually administered by injection, the only medications that can cross from the bloodstream into the brain are small-molecule drugs.

But big pharmaceutical companies have largely abandoned the development of new small-molecule therapeutics, instead pursuing biologic drugs which tend to be more expensive and profitable. That is because of a complex mix of federal laws granting longer market exclusivity to biologics, patent law changes that remove economic incentives to develop new small-molecule therapeutics, and mounting Food and Drug Administration hurdles.

Yet small-molecule drugs can be highly effective and life-changing, as well as relatively cost-effective to manufacture and distribute. They are our best hope for offering real relief to people struck by cruel conditions rooted in brain function.

As we pick up the pieces from a once-in-a-generation pandemic, we cannot ignore the rise in debilitating post-infectious diseases. In a sense, the people afflicted by these illnesses are living with invisible scars from the infections that preceded their current illnesses. There is an urgent need to help them by restoring incentives for small-molecule drug development and streamlining regulatory processes for new treatments.

The government should be accelerating efforts to expand its support for new drug therapies to address fibromyalgia, CFS/ME, Long COVID, and other illnesses that originate in the brain. The untapped potential of emerging therapeutics is unacceptable, as is the fact that many patients’ symptoms are frequently misinterpreted or dismissed.

It is good news that the Advanced Research Project Agency for Health has been established within NIH to pursue biomedical breakthroughs. But our country could still be doing more on this front. Congress has the power to legislate a more level playing field for small-molecule drug development, correcting decades of bureaucratic bias.

Lawmakers should appropriate more resources to fast-track clinical trials and scale-up delivery of novel therapies for post-infectious diseases. Public-private partnerships could also go a long way towards bridging the gap between treatments that would transform patients’ lives and their current limited options.

We know from our experience with COVID that medical science is capable of swift and significant breakthroughs. Our public health system should be equipped to readily diagnose and effectively treat people with fibromyalgia, CFS/ME, Long COVID, and similar devastating illnesses.

While the symptoms of these diseases are often not visible, our responsibility to provide patients with advanced and effective care is very real. For millions of Americans and their families, the time for better treatments is now.

Seth Lederman, MD, is a physician-scientist and CEO of Tonix Pharmaceuticals, a company developing technologies to treat Long COVID, PTSD, fibromyalgia, and other diseases.