What Doctors Should Ask Patients in Pain

By Carol Levy, PNN Columnist

I learned in childhood to keep my mouth shut if I had pain or was feeling sick. My siblings would say, "Stop your whining. Just go to your room if you're feeling so bad, so we don't have to hear about it!"

I learned to say nothing, no matter how bad I felt.

That is how I still handle it today. When I see a doctor about my trigeminal neuralgia pain or some other pain, they’ll often say, “Your pain can't be as bad as you say. You don't act like you're in pain.”

I was at the neurosurgeon's office. One of his residents wanted to touch the left side of my face and I wasn't sure why. Maybe to see what I would do? He knew any touch to the affected area would set off horrible, terrible pain.

“Are you ready?” he asked before touching me. His finger hit the mark and I instinctively jumped back, but didn't make a sound. The resident looked at me; like he was waiting for a cry, scream, wail, or any normal vocalization of pain. Instead, I was silent.

“Are you okay?” he asked, somewhat warily. He didn't realize I was literally unable to answer. My childhood lesson not to speak about pain had morphed into mute silence as an adult. I was speechless; my larynx unable to produce a sound.

I cleared my throat a few times in an effort to speak, while raising a finger in the universal sign of “wait.” After a few minutes, I was finally able to speak, but my words would not come out clearly.  Once triggered, the pain takes its own sweet time before it settles down.

My words were interspersed with more throat-clearing: “I can't, hahahem, speak when the, hahahem, pain is triggered.” 

Others who have chronic pain usually say the opposite: “When a doctor sets off my pain or I am in pain, I have no choice. I scream, I cry or I curse. I make faces and grimace.”

It is an automatic response. And often the doctor's reply in words or facial expression is, ”I don't believe this act you're putting on."

So what's a pain patient to do? What's a doctor to do?

For us, it's simple. If the doctor says, “It really isn't necessary to be so loud and to use profanity, or to wail and scream. In fact, it makes me think you're being overly dramatic.”

We need to reply in a way that says, “Doctor, this is what I do to express my pain. It may be unusual to you, too loud, or too unpleasant. But it is the only way I know how to express it.”

The doctor on the other hand? He doesn't know unless he asks a key question: “How do you let others know if you are in pain or what your level of pain is? Do you express it by crying or with grimaces? Or do you become silent?”

It comes down to one of my favorite sayings: You don't know what you don't know. And if you don't know what you don't know, you don't know what to ask. Our doctors need to ask.

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.

‘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.”

5 Lessons I’ve Learned About Chronic Pain

By Barby Ingle, PNN Columnist

Do you ever feel like your time, energy and hope are running out due to chronic pain or illness? That you aren’t living life to the fullest and may never be able to?

Many people who live with painful disabling conditions have that kind of fear and self-doubt. If you are struggling with similar thoughts, read along while I dive into the five most meaningful lessons I’ve learned about chronic pain.

I wish I had known these things when my journey through the American healthcare system began. I strive to be healthier and wonder if my wellness would be further along if I had known better from the start.

The good news is that changing today can affect your tomorrow. It is never too late to make improvements in your life. Whether you are a longtime chronic pain patient or just starting on your pain journey, these five insights may help save you some heartache and frustration. 

1.  Keep good medical records 

I have long been a proponent of keeping and updating your medical records.  Use technology to your advantage. Advances in health information technology make it easy to store and retrieve data, and facilitates the rapid exchange of patient information. This can help you file insurance appeals and when seeking prior authorizations.

When a provider closes down unexpectedly, having medical records from your patient portal either printed or downloaded in PDF form can also help you find a new provider. This is something I faced this year when my ketamine provider abruptly shut down.  

2.  Not all providers are equal 

Learn everything you can about your illness and keep learning. It is also essential to seek specialists who know about your complex medical condition.

People often look up to their doctors and put total faith in them. However, most doctors are educated and trained in only one specialty in the practice of medicine. Just because a doctor is a neurologist doesn’t mean they can treat diabetic neuropathy, multiple sclerosis or Lyme disease. 

Providers may have expertise in treating one or two conditions, and know only a little about others. With thousands of diseases, conditions and treatments, no provider can know them all in-depth. Learn about your provider's experience and limitations, and encourage them to seek additional knowledge from their peers to help you. Communication is the key to improving trust and faith in your treating doctors.

3.  Your diagnosis does not define you 

In medicine, a diagnosis refers to a specific disease or illness, but not the characteristics of each patient. A condition may present itself and progress differently, depending on the patient’s genetics, lifestyle and environment.

I was once given a diagnosis of thoracic outlet syndrome (TOS) when I was exhausted, over-treated, and scared. It turned out that was an incorrect diagnosis and that the TOS-like symptoms I was having were secondary to the real cause: Reflex Sympathetic Dystrophy (RSD).  

We need to be careful not to jump to easy conclusions. I also realized I had to stop comparing my symptoms and outcomes to others with the same condition. I turned my focus on creating the best me I could be. 

4.  If something is too challenging, break it into smaller pieces 

Do the more manageable actions first, and then see what is left to conquer.

Tackling one problem – like organizing medical records from a single provider -- can give you the positive momentum to take on the more challenging ones. If you find yourself having difficulty -- stop, take a break and work on something else. Get that feeling of success (and the endorphins that come with it), and return to the challenge when you are ready for it. 

5.  Share your journey 

Each of our journeys are unique, but hearing someone else’s experience can offer us hope, options, and ideas that we can use to improve our own lives.

For example, I’ve found that hydration is super essential for coping with RSD. My primary care doctor said I should drink water regularly to help regulate my body temperature, keep my joints lubricated, prevent infections, replace nutrients in my cells, and to keep my organs functioning correctly.

He was right. I learned that when I consistently drink 60-70 oz. of water daily, take my medications on time, and do light stretching, my sleep, cognition and mood also improve.

Continue to share and cultivate habits that support your long-term health and happiness. The more we know, the better our decisions will be. I’ve dedicated my life to helping people with chronic conditions have happier and more meaningful lives. The key is to believe in yourself while building the life that you want. After helping thousands of people worldwide and reading countless success stories, I am confident that you can do that.

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.    

Why You Shouldn’t Be Afraid to Ask for Help

By Barby Ingle, PNN Columnist

We all have lives to lead and sometimes we must focus on ourselves before we can help others. There's nothing wrong with that.

But what if your health (or lack thereof) prevents you from accomplishing something good for yourself and others? What can we do to become more independent and productive while living with a chronic pain condition or disease? 

Here are three things to consider:

1. Social isolation is not healthy

2. Independence can be healthy

3. It's okay to ask for help  

One of the people in my life is the most independent person I know. “Em” only asks for help when she needs it, but often fails to recognize when the need arises. If Em asked for help more often, things might have gone differently in her life and been much easier.

I've been thinking about this recently. I've been balancing my need for independence as a person in pain with my desire to be more open with people. We all want to feel more independent from our caregivers, family and friends. But we also want to stay connected. Seeing some of the challenges in Em’s life reminds me to ask for help more often.

In my books and columns, I have freely shared my life experiences, tips, tools and resources to help others. That helps me feel open and transparent, but it's usually about things I have been through and already found solutions for. When faced with a new challenge, I recognize that I isolate more than I should.

Like my friend Em, I need to find more ways to connect and ask for help when needed. We all need support from others, even if it's just someone listening or offering advice on handling a situation.

When I’ve asked for help, it didn't always go how I envisioned. I may have asked the wrong person for support or had expectations I put on that person that they could not live up to. I had to learn to be okay with the service they offered, rather than be upset and sad when they could not provide what I expected.

The more I learned about their strengths and what they could do, the better I felt asking for their assistance. Asking for help shows that I trust them enough to let them into my world. When you ask for help, you are not weak. You are human.

Asking is not always easy. You have to stop pretending that you can handle everything yourself and that everything is fine. You need to accept the support of your friends and family without feeling like you’re burdening them or making them feel bad about themselves. Asking shows them how much they mean to you.

Here is an excellent example of a recent conversation I had with Em about a friend who wanted to be more social and live life more fully. Em recognized her own limitations. 

"She asked me to meet with her more regularly. Saying she needs people in her life at this difficult time. I am unable to 'be there' for people. I am okay with hanging out occasionally, but I barely have the energy to do basic things each day," Em told me.

My response to Em was this:

"I get it. Explain that you are a chronically ill patient and enjoy connecting when you are up to it, but physically hanging out or texting, talking and engaging cognitively takes a toll on your energy and health. You understand her desire to remain social and the life challenges it takes to follow through. You do best by text, when you have the flexibility and health to answer. You understand her need to be flexible too. She will be in your prayers. Tell her not to be upset if you have to turn down an invite. It doesn't mean you don't want to connect, just that you will participate when you can." 

We must learn how to manage our emotions better so that they don't rule our lives. That means taking a step back so that we don't make decisions while in the middle of a panic attack or depressive episode. And sometimes we just need to hear the answer and decide what to do with it.

Asking for help is complex and we won’t always get what we want. At the same time, we have to step out of our discomfort to make social connections, take down our protective walls, and connect with humanity. Being your best advocate, having others in your life, and maintaining boundaries will help you live life to the fullest. 

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.   

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.