Why Some Drugs Work Better on Different Types of Pain

By Dr. Rebecca Seal and Dr. Benedict Alder

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

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

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

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

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

Anti-Inflammatories

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

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

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

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

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

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

Topical Medications

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

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

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

Nerve Injury Medications

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

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

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

All these medications are prescribed by doctors.

Opioids

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

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

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

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

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

Cannabinoids

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

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

Matching Pain to Drug

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

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

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

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

Why Untreated Pain Can Lead to Violence

By Dr. David Hanscom

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

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

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

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

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

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

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

Spine Surgeon Killed

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

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

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

The Abyss

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Advocacy and Awareness Should Promote Healing, Not Division

By Mia Maysack, PNN Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tips to Make Traveling Less Painful

By Victoria Reed, PNN Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Carol Levy, PNN Columnist

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

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

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

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

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

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

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

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

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

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

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

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

That is a conundrum that has no easy answer.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

To Each Life Their Own

By Mia Maysack, PNN Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Real Story Behind the Overdose Epidemic

By Stefan Franzen, Guest Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Emergency Treatment of Arachnoiditis After Spinal Injection

By Dr. Forest Tennant, PNN Columnist

In rare cases, symptoms suggesting adhesive arachnoiditis (AA) may occur after a spinal tap or epidural injection (therapeutic or obstetrical). These early symptoms may include localized lumbar pain, headaches, burning sensations, dizziness, leg weakness and bladder dysfunction. Spinal fluid leaks or blood in the spinal canal are often suspected in these cases.  

If symptoms indicate the possibility that AA may be developing, we recommend emergency treatment to hopefully prevent the spinal nerve inflammation from spreading and becoming chronic. 

A problem that we have routinely discovered is that medical practitioners commonly have the false belief that they can see signs of AA on an MRI when symptoms begin or within a few hours or days after a spinal tap or epidural injection. But AA typically does not show on an MRI for at least four to six weeks. Consequently, early emergency treatment must be based on patient history and symptoms, rather than on MRI findings. 

At the First International Congress on Arachnoiditis and Tarlov Cysts in 2010, physicians Donna Holder and Antonio Aldrete recommended that methylprednisolone 500 mg be given intravenously every day for five days as an emergency treatment for AA.  

Since that time, a variety of intravenous methylprednisolone attempts with different dosages and frequency have been used by physicians as emergency treatment to prevent AA. Dr. Aldrete opined that intravenous methylprednisolone is only effective in preventing AA if given within 60 days after the spinal tap or epidural. 

We have used the following alternative treatments to intravenous methylprednisolone: 

1. Medrol (methylprednisolone) six-day oral dose pack

2. Ketorolac 30 to 60 mg injection for three consecutive days

3. Medroxyprogesterone 10 mg given twice a day for six days

In some, but not all cases, AA symptoms will abate during the week that either intravenous methylprednisolone or the alternative treatments are administered. In most cases, however, symptoms reduce but don’t totally abate. The reason for this is unclear, but a reasonable assumption is that spinal canal inflammation may not be totally reversed once symptoms begin. 

If pain and other symptoms don’t totally abate, we recommend that the patient begin a three-component medical protocol for AA described in this bulletin, which includes nutritional, physiologic and pharmacologic elements. Patients should remain on these medical treatments until and if their pain and other symptoms resolve. 

It is unclear why only a small percentage of persons who have spinal taps or epidural injections develop AA. It is also unknown why symptoms that begin after these procedures usually don’t abate. 

A New Handbook for Practitioners

Our new book, "Clinical Diagnosis and Treatment of Adhesive Arachnoiditis” is now available on Amazon. 

This handbook for medical practitioners has been written for one simple reason.  AA is no longer a rare disease.  We conservatively estimate that there are at least 1.75 to 2.75 million adults in the U.S. who have AA.  

In the past, the cause of their back pain was often listed as unknown or inappropriately labeled as failed back syndrome, degenerative spine or simply low back pain. 

It is our fervent hope that this book will help medical practitioners and their patients diagnose and treat this most debilitating disease.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from a bulletin recently issued by the Arachnoiditis Research and Education Project. Readers interested in subscribing to the bulletins should click here.

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

Roger Chriss: Remembering a True Helper and Advocate

By Pat Anson, PNN Editor

“Roger was a good friend and caring person. He will be missed tremendously.”

“May this dear, wonderful, kind man rest in the peace he deserves. Free of pain.”

“Heaven just got a great mathematician. Heaven's gain. Our loss.”

Those are just a few of the heartfelt tributes being posted online about PNN columnist Roger Chriss, who was a longtime advocate and friend to people living with Ehlers-Danlos syndrome (EDS) and other rare diseases.

Roger died unexpectedly on May 2 at a hospital near his home in Kirkland, Washington. He was 56 years old. 

Although Roger lived with EDS – a chronic and progressive disease that affects the joints, blood vessels and other connective tissues -- it’s unclear if that contributed to his death.  His brother Neil says Roger experienced chest pains and drove himself to the hospital, where he was diagnosed with a mild heart attack.

“He was given blood thinners as part of standard care. He was due to be released and suddenly collapsed and was found with no pulse and no blood pressure,” said Neil Chriss. “In trying to figure out what had caused the collapse they found he had lost a lot of blood internally, so they suspected this had to do with the combination of blood thinners and E-D related weakness in blood vessel walls.

“You should all know that my brother derived great meaning being part of your community. We talked frequently about E-D and the difficulties both mental and physical that go along with it. It’s sad for me to remember that he talked about losing people from the community being an all-too-often experience.”

ROGER CHRISS

Roger was an active member and strong supporter of The Ehlers-Danlos Society, where he co-hosted a support group for men with EDS. He was the first recipient of the organization’s Community Advocacy Award.

Roger grew up in Westchester County, New York where he developed an early interest in mathematics, music, computers and foreign languages. He graduated from Wesleyan University in 1987 with a major in East Asia studies. He later earned a Master’s degree at the Monterey Institute of International Studies and remained there as a faculty member.

Roger was fluent in Japanese, Spanish, French, Latin and other languages. He was a prolific writer and authored two books that reflected his diverse interests: "A Comedy of Time" and "Translation as a Profession."

Roger became a columnist for PNN in 2017 and later joined our board of directors. I can honestly say I learned something new from every column that Roger wrote, whether he was debunking myths about the opioid crisis, challenging the hype about medical cannabis, or advocating for more funding of rare disease research.

I admired Roger’s dedication to the truth, in an age when misinformation, hype and political dogma drives too much of the news coverage about healthcare. He brought an abiding concern about patients to every issue he wrote about, and a farsighted view of where it might take us.

In recent years, Roger posted almost daily on Inspire, an online health community for patients, where he supported and made many friends in the EDS and rare disease community. He used the screen name “Seshet” – a variation on the name of an ancient Egyptian deity of wisdom, science and mathematics. It was a fitting nickname for Roger.

“Seshet was truly a guiding light to me and so many others through this pandemic,” one poster wrote. “I’m sure he is in heaven calculating the probabilities of why this happened to him, but I know in his core he understood the unpredictability of life.”

“While his life was too short, his life had great meaning. He was so very wise and generous with this community, a true helper, which I believe is life’s highest calling,” said another.

Roger’s family is planning a private memorial for him. In lieu of flowers, they’re asking friends to consider making a gift to The Ehlers-Danlos Society. Click here for details. 

My Botched Anesthesia During Surgery

By Victoria Reed, PNN Columnist

Have you ever had elective surgery that didn’t go as planned, but instead caused more pain? Did it make you think twice about having surgery again?

Having a chronic illness means that some surgeries are necessary to improve quality of life. People suffering from rheumatoid arthritis (RA) often end up having surgeries, as joint pain and deformity are common complications. Surgeries can include joint replacement or removal of rheumatoid nodules -- subcutaneous lumps or masses that can attach to underlying tissue.

Nodules are associated with more severe forms of RA and usually occur near elbow joints or joints of the hands and feet. About 20% of RA patients suffer from these nodules, which usually aren’t painful, but can cause complications.

I am one of the 20% of RA patients who has developed these nodules. Years ago, I had one growing on the underside of my right big toe. It grew so large that it was causing pain, and I was having trouble walking on that foot. I was compensating for the discomfort by using just the outside of my foot, so I consulted with a podiatrist to talk about having the nodule removed.

The doctor advised me that it could be surgically removed, but also that it could possibly grow back over time. Considering that it was affecting my ability to walk comfortably, I decided to go ahead with the surgery.

For some reason, the doctor did not want to use general anesthesia during the surgery and opted for local injections of an anesthetic to numb the toe.  This did not go well for me. As the surgical assistant injected the medication, he must have hit a nerve because it caused some of the most excruciating pain of my life! It was more painful than childbirth. As I screamed in pain, he injected the toe THREE more times, each one being equally painful.

Needless to say, that was a very traumatic experience, but the toe was indeed numb enough to cut into. After the nodule was removed, which was described in the pathology report as a “wad of gum” type of mass, I was sent home to recover, hopeful that the toe would be as good as new.

It wasn’t.

As the anesthetic wore off, I realized that I had no feeling in the toe. I called the office and inquired as to why I still had no feeling in it and was told to give it time. They assured me that the sensation would eventually return. A week passed, then another week, and still there was no feeling in parts of the toe. Other parts had a new and strangely painful tingling sensation. I called the office again and was told to allow more time for full sensation to return.

Nine years have passed and there has been no improvement. I suffer from sharp, stabbing nerve pain in that toe, which is still completely numb in certain spots. Unfortunately, the nodule has grown back as well. I’m not sure if the injections caused the nerve damage or if the actual removal of the nodule did, but had I received general anesthesia, I would not have had to suffer through those excruciatingly painful injections.

Because of that horrible experience, I am now very reluctant to consider elective surgery again.

We, as chronic pain sufferers, must always advocate for ourselves. Or have someone advocate for us, if we are unable. We should question the decisions made by our medical providers if they don’t seem right or if we are unsure or nervous about a procedure. While there are many competent doctors and surgeons, unfortunately, there are some that are not and who don’t always have our best interest in mind.

I never could have predicted the horrible outcome of that surgery. But the lesson I’ve learned is to ask as many questions as possible prior to any procedure and to thoroughly research any physician who is going to cut into my body. One good question to ask is, “How many of these surgeries have you performed?” Newer surgeons can be perfectly capable, but the more experienced a surgeon is, the better the outcome will likely be for you.

RA can present many challenges, mainly severe pain, but it can also affect a patient’s mobility and morbidity. I will need to decide if I want to have another surgery to remove the recurrent toe nodule or decide if it is something I can learn to live with. Either way, I have learned some valuable lessons.

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

Drug Addiction Is the Problem, Not Prescription Opioids

By Christine Kucera, Guest Columnist

The Centers for Disease Control and Prevention (CDC) is the leading national public health institute of the United States. The agency is responsible for protecting the public from health and safety threats. 

In my opinion, the CDC has no business writing clinical guidelines! Medical guidelines for healthcare/disease management, medication management, and clinical decision making should be developed, reviewed and approved by a diverse team of clinical subject area specialists and key stakeholders, including medical specialists, medical groups, advisory teams, advocates and patients. Not regulatory agencies!

The 2016 CDC opioid guideline, as currently written, has harmed and damaged millions of lives, and caused unspeakable suffering. In effect, the CDC sanctioned torture by failing to promptly address and correct the negative impact of its guideline on individual patient care, addiction and pain management treatment and resources.

The CDC has clearly overstepped its authority by creating a guideline meant to regulate the use of prescription opioids. Any regulatory measures which prevent patients from accessing prescription opioids as indicated for their health and well-being are unethical and should be reconsidered, if not totally withdrawn.

The CDC continues to propagate the false narrative that any patients requiring prescription opioids for any type of pain are or will become addicts. And it continues to claim — without any evidence — that if opioid prescriptions are limited in quantity, type, duration and dose, there will be a reduction in addiction, overdose and death. The facts indicate otherwise. Overdoses are at record high levels.

The True Causes of Addiction

Substance addiction exists because our government has failed to address its true causes, which include poor access to addiction treatment, unethical pain treatment, lack of quality care standards across medical institutions, and lack of legislative laws that protect patients from suffering needlessly. 

Addiction is caused by preventable and manageable health disparities, untreated and undertreated mental and physical suffering, genetic metabolic variability, lack of resources, lack of all-inclusive healthcare insurance, lack of provider managed pain care, lack of treatment centers, lack of access to appropriately prescribed medications, lack of drug monitoring systems, lack of access to mental health and pain care providers, lack of timely access to a comprehensive network of providers, and lack of individualized care. 

Maybe if the CDC actually focused on the above health and safety issues, we would have guidance on solving the real problems. The CDC has failed miserably to recognize that individual pain care is as unique as the patient who is suffering in pain. Every single person that has pain seeks relief.

Relief comes in many different forms, both healthy and unhealthy. These forms of relief may be self-directed and/or medically managed by clinical staff and providers, and includes exercise, yoga, rest, mobilization, heat/ice therapy, massage, mindfulness, acupuncture, Chinese herbal medicine, bio-feedback, diet, weight loss, surgeries, water therapy, bicycling, strength/weight training, martial arts, immunotherapy, TENS, anti-inflammatories, anti-seizure medication, muscle relaxants, antidepressants, biologicals, medical/recreational cannabis, CBD, kratom, prescription opioids, illicit/illegal drugs and alcohol — to name a few. 

Every Patient is Different

The journey each patient in pain takes is individual. The pain you've experienced and lived with is different from mine and everyone else’s.  

The terms “acute pain” and “chronic pain” are also misleading and are part of the false narrative. Pain is a symptom. Its management depends on its physical and/or mental cause, not how long it lasts. Pain is the body's way of sending up a red flag that something is not right.

Duration means nothing in the world of pain, as every minute of the day is different in type, in location and in intensity. Pain goes through cycles, and no person experiences pain the same way.  

Until the individuals who wrote this God awful, evil guideline experience pain that is unrelenting, agonizing, non-stop, 24/7 for their entire life, they should back off the false narrative, go back into their non-medical cave, and leave the medical decision making up to the actual physicians who are trained to manage pain with all the tools available and at any quantity required by a patient.  

What the CDC should be addressing are the sources of suffering, identifying at-risk individuals and providing a framework for implementing resources and systems of care that are fluid and adaptive to the unique circumstances of each individual.  

There are too many outstanding questions and issues which also continue to impact patients and providers. What are the FDA and DEA’s roles and responsibilities? How do their policies meet the objectives of the CDC guideline to reduce addiction, overdose and death? What impact do they have on medical providers treating patients in pain? 

Addiction is the public health issue requiring CDC input, not the utilization of prescription opioids for pain treatment. 

Christine Kucera is an intractable pain patient survivor of over 30 years. She lives with reactive psoriatic arthritis, spondylitis, polyarthritis, sacroiliitis, degenerative disc disease, dermatomyositis, mixed connective tissue disease, psoriasis, lupus, spinal radiculopathy, thoracic outlet syndrome, endometriosis stage IV, 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. 

A Pained Life: My Teaching Moment

By Carol Levy, PNN Columnist

There are not many positives to being in chronic pain, or having the disorders and diseases that cause it. But I think I found one.

Being harassed for not being able to wear a mask was a horrific experience for me. No good could come out of it, I thought, until I realized it could have been a perfect teaching moment.

I complained to a friend, who also has trigeminal neuralgia, how upsetting it was to be mask shamed, and that I feared it would happen again.

Her response was to send me a business-sized card to hand out that explained why I couldn't mask.

It reads: “I have facial pain. Any touch to the side of my face causes horrific pain. That is why I can’t wear a mask.”

I liked the card, but didn't feel comfortable handing it out. I put it in a drawer and left it there. But then, at the dental clinic, I was repeatedly handed a mask and told, “You need to put this on.”

Each time I had to pull out my doctor's note and explain why I would not and could not mask. It became very tiresome.

Then I remembered the card. I thought it needed to be more explicit and instructive, so I made another card that says this:

“Trigeminal neuralgia is a neurological disorder of the 5th cranial nerve that gives sensation to your face. With trigeminal neuralgia the sensation is severe, often excruciating pain, on its own as well with any touch to the affected area of the face involved.”

On my next visit to the dental clinic, I was handed a mask. Instead of saying, “I can't” and having the back and forth of “Why not?” and “A mask can't hurt you,” I handed her my and card said, “This is why I can't mask.”

She read it and said, “Okay. You don’t need to mask.”

It was a perfect way to educate her about trigeminal neuralgia, and cut off the debate that often ensues.

It’s easy to make a card. The small size of a business card makes it difficult to do anything but present the most important parts of the disorder or disease we have. For instance, for CRPS it could read:

“I have a disorder called CRPS, or complex regional pain syndrome. It is caused by dysfunction of nerves that carry pain signals to the brain. It causes spontaneous and touch-induced pain that is often disabling.”

Of course, that is not a full description of CRPS, but gives just enough information to be instructive and hopefully understandable to those who ask why you can’t do something.

Handing out the card makes me feel good. It’s a teachable moment. Being able to educate others may be the best thing we can do for ourselves. 

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.

What Are the Long-Term Risks of Prescription Opioids?

By Roger Chriss, PNN Columnist

A standard critique of prescription opioids is the absence of good long-term data on safety and efficacy. Clinical trials are generally short-term and last only a few weeks, so questions about cumulative long-term risks, including addiction and overdose, remain unclear.

Clinical trials that run for a year or more are complex and costly. Attrition may be high and outcomes may be muddied by the inevitable effects of aging, disease progression, and life events. There are also ethical issues involved with subjecting patients to long-term trials where they may receive nothing more than a placebo.

In other words, launching new trials is often impractical. Fortunately, there are a few other ways to answer questions about long-term opioid risk.

Compare Outcomes

First, we can compare outcomes among patients whose key difference is opioid dosage. In a recent Canadian study, researchers looked at over 2 million individuals in Ontario given an opioid prescription between 2013 and 2016 for pain. They identified 1,121 patients who had a fatal or non-fatal overdose – a minuscule overdose rate of 0.0055 percent.

But when compared to patients getting relatively low daily doses of 20 morphine milligram equivalents (MME), those who received 200 MME or more had a “high hazard of overdose.”  

A dose of 200 MME may be an extreme example, since Canadian guidelines recommend that initial doses be limited to no more than 50 MME. But researchers said their study proves the value of guidelines. 

“Although the absolute risk of an opioid overdose within the first year of prescription opioid use is low, better alignment of opioid initiation practices with guidelines may reduce opioid-related harm,” they concluded. 

Compare Opioids 

Second, we can compare two opioids: oxycodone and hydrocodone. In a retrospective analysis of patients in Oregon between 2015 and 2017, researchers found that after an initial prescription in opioid-naive people, 0.3% experienced a fatal or non-fatal overdose and 2.8% refilled an opioid prescription at least six times, what the researchers considered “chronic opioid use.” 

Patients who received oxycodone were less likely to develop chronic use than those receiving hydrocodone, but the oxycodone patients had a slightly higher risk of overdose.  

Based on that finding, researchers concluded that “hydrocodone may be the favorable agent” when starting people on opioids. 

Compare Odds

We can also use statistical inference to estimate risks. In an analysis of 13,884 U.S. adults living with chronic pain between 1999 and 2004, epidemiologists found that 5% died from all causes within 3 years and 9% died within 5 years.  

Researchers found that chronic pain patients on opioids had a slightly higher risk of death – and calculated an odds ratio of 1.06 for them dying within three years and 1.03 at five years compared to those not taking opioids.  

It’s hard to infer much from a study like that, because researchers didn’t establish a causal relationship between opioids and death. Since chronic pain itself raises the risk of dying, the findings could simply mean that patients on opioids are sicker, in more pain, and closer to death.  

Despite this, researchers came to the sweeping conclusion that “chronic pain increased the risk of all-cause mortality through opioid prescriptions.” 

Compare Health Outcomes 

Last, we can look at health outcomes. An alarming, preliminary study from Taiwan evaluated chronic pain patients on long-term opioid therapy and found they have significantly higher risk for cancer compared to those not taking opioids. 

The overall hazard ratio for the opioid group was 2.66 – which means they have over twice the risk of having many different types of cancer. 

“Long-term opioid use might be a significant risk factor for breast, gastric, colorectal, ovarian, prostate, lung, pancreatic, head and neck, and esophageal cancers and HCC (hepatocellular carcinoma),” researchers concluded in their study, which has not yet been peer-reviewed. 

Risks of Other Drugs 

These findings help shed light on the long-term risks of prescription opioids, at least compared to healthy control subjects who do not take opioids. However, that is not the situation faced by most people with chronic illness, who are often on multiple medications to manage their pain and other symptoms.  

As a result, we need to know the risks of non-opioid pain management options. For instance, the consequences of cannabis addiction are low compared to opioids. But the cancer risk appears to be substantially higher. A major review in BMC Archives of Public Health found that “cannabinoids including THC and cannabidiol are important community carcinogens exceeding the effects of tobacco or alcohol.”

The risks of non-steroidal anti-inflammatory drugs (NSAIDs) are well-known. According to a 2011 review, “chronic NSAID use increases the risk of peptic ulcer disease, acute renal failure, and stroke/myocardial infarction. Moreover, chronic NSAID use can exacerbate a number of chronic diseases including heart failure and hypertension.” 

For other non-opioid medications, we lack long-term studies. For instance, a 2017 Cochrane review on gabapentin for chronic neuropathic pain notes that “study duration was typically four to 12 weeks.” Cochrane also notes that only short-term trials were conducted for serotonin and norepinephrine reuptake inhibitors like duloxetine for fibromyalgia.  

As for non-pharmacological options like spinal cord stimulators, the situation is similarly uncertain. A new Australian study in the Journal of Patient Safety found that for every 10 stimulators that were surgically implanted, four had to me removed for various reasons. That outcome went unnoticed in short-term studies and emphasizes the need for more careful patient selection and monitoring of outcomes.  

There are real risks to prescription opioids but it would be simplistic to dismiss them entirely. As pain physician Antje Barreveld notes in a recent STAT News op-ed: “Opioids do have a place in pain control and can be safely prescribed, even at high doses, by following best practices while monitoring for risks and side effects.” 

Understanding the long-term risks of prescription opioids will be important as the CDC finalizes its revised opioid guideline, and as regulators, insurers and clinicians decide how to act on them. But more generally, we need long-term studies of all pain management modalities so that we can better understand their risks.

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

Breathless: My Anger at a Failing Body

By Cynthia Toussaint, PNN Columnist

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

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

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

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

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

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

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

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

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

Breathe, Cynthia. Breathe.      

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

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

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

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

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

I’m suffocating.   

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

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

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

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

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

HIPAA-critical Vaccine Exemptions

By Mia Maysack, PNN Columnist

A friend recently invited me to a concert that demanded proof of full vaccination against covid or at least a medical exemption from getting one. 

I want to make it clear that I'm not an "anti-vaxxer." But I personally do not feel that I can tell another person what to do with their own body. I exist as a chronically ill person due to circumstances that were entirely out of my control as a child. Through the years, managing these ailments has been daunting, and mainstream treatment options inflicted even more complications that I still live with to this day. 

For credibility’s sake, you should know that I received an average of 30 injections every three months for about 15 years as a method for pain control. The last time I went in, my world was flipped upside down by such a bad reaction to the shots that I haven't returned for that treatment or any other mainstream approaches to medicine.  

Although I'm aware it could've been an allergic reaction (they've been producing cheap medication overseas), I have no reason to expect such a thing won’t occur again. The words “rare” and “unlikely” don’t mean much when bacterial meningitis threatened my young life through an untreated ear infection. That wasn’t a foreseeable circumstance either. So the fact remains: no one can be sure what they are getting. Due to how difficult it has been to survive in this body up to now, I'm not content on taking any more unnecessary risks. 

I requested and was denied a vaccine exemption, the desire for which did not stem from any place of entitlement, but because I cannot gamble with my quality of life. The fact that I'm expected to is an illustration of the deeply rooted problems within our healthcare system and proves that, despite what they claim, it is not operating from a place of patient-centeredness.  

I don't find contentment with the reassurance that few adverse reactions have been reported from covid vaccines, because I personally know people who have experienced them and there simply hasn't been enough time passed for anyone to even begin to know what things could happen down the line. 

I was told that an exemption isn’t something my clinic can do, not even for religious reasons, because they consider it a “personal choice.” The only way to have it granted is to literally attempt an injection and experience adverse effects. But that’s something I’ve already – and barely -- lived through. 

Suffice to say, this is not a one-size-fits-all situation. They encourage everyone to get vaccinated, but why does that encouragement feel more like I’m being forced? I know what's best for my body and if/when I do take the jab, it’ll be on my terms and not because I was bullied into it. 

The job of medical professionals is to honor and be a partner in care. I know this because I was once one of them, but had to step off my beloved hospital floor for good after a setback in my health. Back then, under the Health Insurance Portability and Accountability Act (HIPAA), we could’ve lost our jobs for peeking into our own medical charts. Yet now we’re suddenly expected to carry personal health information on us at all times and surrender it to everyone who demands it.  How is that not a HIPAA violation? 

Regardless of your stance on the science, it’s undeniable that this conduct is questionable at best. Why are we continuing to allow it? The intention here is not to shame anyone for their choices, but to draw attention to our freedom of choice essentially being eliminated. 

There are many different forms of “justice” but our systems have been designed in ways that evade them, along with any responsibility for their lack of equity.  It’s undoubtedly a hindrance, not only for patients, but our constitutional rights. If this is how our institutions are operating, we should be holding them to public accountability.  

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