Help Us End the Suffering of Chronic Pain Patients

By Anne Fuqua, Guest Columnist

In 2014, a good friend of mine suffered a heart attack after his opioid pain medications were stopped abruptly. This was despite the fact his records showed that he was a responsible and compliant patient who worked full-time.

Following his death, I started logging the deaths I became aware of on a spreadsheet. Initially, this was just my version of a memorial. I have pain too, and at times wondered if I’m going to wind up on this same memorial.

Every month for the past six years, I have had to add at least one more name to that list, sometimes multiple names. I knew many of these patients and considered them to be my friends.

Some had no quality of life and chose to end their suffering. Some fought to live with all the strength they could muster, but fell to heart attacks, strokes and ruptured aneurysms that occurred after their medication was involuntarily tapered, stopped abruptly or during periods of severe uncontrolled pain. 

For others, the cascade of physiologic changes that help our bodies respond to stress can become harmful in themselves if left unchecked, causing effects that may shorten life even if the person does not suffer one specific event like a heart attack or stroke.

ANNE FUQUA

Still others were desperate to live but also desperate to get relief. They went to the illicit drug market when they failed to get the surgery, physical therapy or medication that they felt could improve their quality of life. 

There is a name for abandoned pain patients, left to fend for themselves. Dr. Steve Passik coined the term “opioid refugee” in 2012. Tragically, some of these opioid refugees have died in their quest for relief. They sought relief that would allow them to get restful sleep, enjoy quality time with loved ones, and give them the ability to fulfill responsibilities to their family and society.

CSI Opiods Survey

In 2016, I was fortunate enough to become friends with Dr. Stefan Kertesz, a physician I respect immensely. Dr. Kertesz and his colleague, Dr. Allyson Varley, assembled a team of some of the most respected healthcare providers and thought leaders in the field to advise and support their work. Their goal is to understand what exactly happens when a person with chronic pain dies by suicide. 

After over 2 years of tireless efforts to obtain funding, they have begun a pilot project, a survey of people who have lost someone to suicide. I am helping them understand how to reach out to the people who have lost loved ones. The project has the support of the Department of Medicine at University of Alabama at Birmingham. 

If you would like to know more about Drs. Varley or Kertesz, I would encourage you to Google them so you can see for yourself the quality of their work and their dedication to underserved populations. You may also want to check out Dr. Kertesz’s Tedx Birmingham talk on suicides in the pain community.

Our initial work is a pilot study, We wish to learn how many surviving family members and close friends are willing to come forward and complete a survey after losing a loved one to suicide. For now, we are examining suicides where the patient who died had experienced a change in their opioid medication prior to their death, whether it was decreased, increased or stopped. 

If you have lost a loved one, there are two ways that you can participate. We have a brief online survey you can complete that’s entirely confidential. You can take the survey by clicking here or on the banner below. If you are unable to complete this survey all at once, click “save and return later” and you will be able to save your responses and return to the point you left off at a later time. 

If you would feel more comfortable speaking with someone, you can call toll-free (866) 283-7223. There is no payment for doing the survey. Official study information, approved by a University Institutional Review Board, is online at the survey website.

We may eventually get funding to study other types of deaths. We are asking anyone who has lost a loved one to suicide following a change in opioid dose to consider responding to our survey. If enough people do come forward, it will help to make the case that these terrible losses need to be studied closely, rather than ignored.

I recognize this initial effort has a narrow focus. There are many grieving families who want their loved one’s death to be counted even if it was not a suicide. The way the survey is set up, if you report that the person you lost did not die by suicide, it is going to ask for your contact information. You can provide the research team with your contact information so you can be notified about future studies. 

I still keep my own list of deaths as I learn about them, my memorial. It’s important to know that my list is private. Dr. Kertesz and Dr. Varley do not take names off my list. That’s because university research can only be done with consent. If you have a name for my list, whether they died by suicide or not, contact me and I will add your friend or loved one. I make statistics about the deaths -- but no names -- available to policymakers and patients involved with advocacy work. The list itself will not be made public. 

If you are like me, you are apprehensive about what will happen next. I think most of us are exhausted from the fight for better pain care and desperate for change. Change cannot come soon enough when you are the one who is suffering. This is the first step towards ending needless suffering and loss of life.

Anne Fuqua is from Birmingham, Alabama. She lives with her cat Gabby and has primary generalized dystonia and arachnoiditis.

No Blessing Is Too Small

By Mia Maysack, PNN Columnist

People have asked me and goodness knows, I ask myself sometimes: How am I going continue living this life?  

Please don't ever think I made it to this place overnight. Blood, sweat and tears are only the beginning of what it has taken. There aren't enough words to properly convey or explain what it's like to be in pain each moment of every day. Unless that's relatable to you, others just don't get it because they ain't got it, right?  

The ongoing situations I experience sound insane when I attempt to explain them. It's not logical to never have a break from discomfort; for your insides to feel as though they're climbing their way out, while the outside shrivels into a condensed version of identity that exists some days more than others, and at some points seems to disappear altogether.  

My conditions, whether we're referring to my relentless hurting head or the agony of damaged nerves, cause symptoms far beyond the ailments themselves. Persistent exhaustion has brought me to tears because the extent of the tiredness legitimately frightens me, convinced I must be slowly dying. But isn't that ultimately what we're all doing?

That acknowledgement isn't meant to be grim, but rather to shed a light on what has made it possible for me to even be here to write this:  Gratitude. Even for the smallest blessings.

Although I'm thankful to have made it to see another day, it began at an unreasonable hour this morning. As I lay there defenseless, a brutal migraine attack wreaked havoc out of nowhere, causing a wide array of less than positive emotions while I attempted to fight back.  Those are the moments when I wonder how I'll ever continue to possess what's needed to survive. When I cannot even manage to get myself out of bed.

Pre-COVID, most people smirked at the idea of “lounging around all day” and how nice it must be. So, maintaining that same logic, next time you're ravished with a relentless flu or tummy bug, just reflect on how nice it is to lie around and you'll feel much better. Not.

Remain mindful as to what you wish for and the way you judge a life you haven't lived. I don't even get a shot at normalcy, because the trigger of stabbing pains has already been pulled as I wake to attacks and flare ups. 

We continue on despite our pain. If we didn't, we obviously would no longer be here. There are times I contemplate slamming my head against the wall. Considering it already feels as though I have, that seems counterproductive.  

I'm overjoyed for whoever can continue to carry on, there are just days that I can't. Part of how I had even gotten myself this ill is by pushing myself too far. Singlehandedly operating a business, attending school and successfully running a hospital floor tending to the needs of others.

I'm no stranger to hard work; incurable ailments and a lifelong illness are the toughest jobs I’ve ever had!  Self-care wasn't something that existed in my world. Despite the fact it required hitting a wall first, learning self-care to tend to myself properly and unapologetically has been a gift that keeps giving.    

A difficult aspect of all this for me is that others seemingly forget who you were. I'm seen in a light now, almost as if I'm not living up to my potential and definitely pick up on vibes that being chronically ill somehow makes me "less" of a person.

I do not accept that and here's why: Anyone that has a negative opinion regarding your situation either cannot relate or doesn't understand, so always consider the source. I am thankful for their health and celebrate that mine isn't any worse.  

As people enduring these circumstances, we experience pain levels that would bring others to their knees. Free yourselves from judgement of self and others. Remain prideful. We know what it has taken to make it to this point and only we know what's best for us. My choice is to continue inching closer toward acceptance of the current moment and remain faithful in future possibilities.

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.

Intractable Pain Syndrome Has 2 Kinds of Pain

By Forest Tennant, PNN Columnist

A major reason that persons with Intractable Pain Syndrome (IPS) experience such misery is that when pain is the constant, 24/7 variety, it has two parts: ascending and descending pain. Both types need to be treated for relief.

Picture your body running on electric currents. In your house, electric currents are conducted by wire. Although there is no good reason to avoid the term “wire” when it comes to the human body, we usually refer to our biologic wires as nerves, nerve roots or neurons.

Unfortunately, any disease or injury to one or more of our “wires” blocks the electric currents that normally flow through the nerves, nerve roots or neurons, and diverts electricity into the surrounding tissue to produce inflammation and pain.

Ascending Pain is caused when pain electricity travels from the disease or injury site up the nervous system to the brain. This is the most common type of pain. For example, if you have a sore knee, pain signals travel from the knee to the brain.

Descending Pain is caused when severe pain from any number of diseases and injuries sends so much electricity into the brain and spinal cord that it accumulates. Areas of inflammation develop and destroy and/or damage the dopamine-noradrenaline neurotransmitter systems that control descending pain.

The excess electricity from these inflamed sites travels down the nervous system into muscles, skin, tendons, joints, fatty tissues, and the large and small peripheral nerves. Small nerve endings in the skin can “burn out” due to all the descending electricity and a skin biopsy will probably show small fiber neuropathy.

How do you know if you have descending pain? You have muscle aches all over which are often labeled as fibromyalgia. You hurt everywhere and experience episodes of overheating, sweating, and cold hands and feet, often at the same time!

Tips to Reduce Descending Pain

The critical point is that usual pain treatment only treats ascending pain, not descending pain. Opioids, antidepressants, anti-inflammatories and muscle relaxants do not usually do much for descending pain.

Each person with IPS must adopt a few simple but specific medical, physical, and dietary measures to attain some relief and recovery from both kinds of pain. You must maintain your dopamine-noradrenaline neurotransmitter systems daily, or you will have increased pain and misery, and believe that more drugs like opioids are the answer.

The understanding of blocked and diverted electric currents has led to the identification and labeling of a group of treatment agents that help normalize electric currents. These are known as neuropathic agents. The neurotransmitter most responsible for the proper conduction of electric currents is called gamma aminobutyric acid (GABA for short). It is synthesized by the body from the amino acid glutamine.

Neuropathic medications include gabapentin, pregabalin, carisoprodol, topiramate, duloxetine, and benzodiazepines.

In addition to neuropathic agents, there are simple “age-old” remedies that still work for most people because they help modulate electric currents so that they don’t divert, accumulate, and cause more inflammation and pain:

• Water Soaking

• Epsom or Herbal Salts

• Magnets

• Acupuncture

• Copper Jewelry

• Walking Barefoot

• Dry Needling

• Petting Fur

• Magnesium

Every person with IPS needs a daily program of neuropathic agents and age-old remedies to minimize the consequences of accumulated electricity.

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

The Tennant Foundation has given financial support to Pain News Network and is currently sponsoring PNN’s Patient Resources section.  

The Gaslighting of Pain

By Ann Marie Gaudon, PNN Columnist

It’s become a buzzword. “Gaslighting” is a term used to describe the repeated denial of someone’s reality in an attempt to invalidate them. Its origins can be found in a misogynistic 1944 film showcasing a husband trying to convince his wife that she is insane.

To be clear, gaslighting is a form of emotional abuse and is not exclusive to romantic relationships. This attempt to manipulate a person’s reality is systemic and can be seen in social media, politics, cable news and even healthcare. When a medical professional invalidates, dismisses or even leads a patient to question their own thoughts and experiences, that is traumatic and abusive.

It is hardly news that women are more often told than men that their pain and other symptoms are emotionally-based and psychogenic: not real. Years ago, I attended a lecture given by a young woman detailing her experience with significant knee pain. She had seen several doctors to no avail; she was told the pain was all in her head. One doctor said the cause of her pain was due to “wearing her jeans too tightly and this is a common problem with teenage girls.”

She wondered out loud if this would have been her diagnosis if she were a male teenager. Eventually she did obtain a correct diagnosis for her knee pain which was osteosarcoma – the very same cancer that Canadian athlete and national hero Terry Fox succumbed to.

 A 2015 study interviewed women who had been hospitalized due to a heart attack but were reluctant to seek medical care, citing anxiety about “being perceived as complaining about minor concerns” and “feeling rebuffed or treated with disrespect.”

Since being diagnosed and treated for the female-only disease of “hysteria” in the 19th century, women’s emotions continue to be used as the cause for all that ails them. This inherent gender bias in healthcare is another form of gaslighting.

“We want to think that physicians just view us as a patient, and they’ll treat everyone the same, but they don’t,” Linda Blount, president of the Black Women’s Health Imperative, told BBC Future. “Their bias absolutely makes its way into the exam room.”

Your chances of being subjected to medical gaslighting increase if you are not white, cisgender or able-bodied -- essentially any marginalized group. However, do not be misled into thinking that all white males will be cared for with dignity and medical acuity. I have had conversations with men who have been dismissed time and again, and had their substantial suffering completely invalidated with the likes of “that [diagnosis] would never bother anyone.” Or they cannot even get a diagnosis and so are labelled as malingerers.  

‘You’re Making This Up’

At times, I am the only person in a patient’s life who actually has validated their pain, because their family does not believe them either. “You’re making this up” or “You’re not getting better because you don’t want to get better” are common themes told to my victimized clients. I watch as their teary eyes fluctuate hurriedly from boring into mine to staring down at the floor as they question their own sanity and if their pain is indeed real.

What happens next can lead to disastrous results. When physicians inappropriately conclude that a patient’s symptoms are all in their head, they delay a correct diagnosis – just like the young woman with knee pain. This can be especially dangerous for patients with rare diseases who already wait longer to be diagnosed as it is. According to a survey of 12,000 European patients, receiving a psychological misdiagnosis can make a proper diagnosis of a rare disease take up to 14 times longer.

The pain patients in my practice (as well as myself) have been told it’s just normal aches and pains, there’s nothing wrong with you, condescended to, yelled at, disbelieved, laughed at, mocked, called names, and dismissed in all manners of arrogance and ignorance.

We’re on the cusp of 2021 and I am still telling my pain patients not to go to any appointment alone because that makes you even more vulnerable to mistreatment. Another person in the room with you can temper abusive treatment by being there as a witness. No one suffering should have to go to any lengths to receive the care they deserve. However, that is reality.

We’ve come too far just to lie down and accept medical gaslighting. Do what you can to defeat this. Find a medical provider that you can connect with; someone who listens, is honest, and frank with you. I have had the privilege of having one physician who completely fits the bill and am now searching for the next.

Become your own advocate. Do not put up with someone who is condescending, arrogant, or mistreating you – fire this person. You and your health need to be taken seriously. Watch for biases and do report a gaslighting doctor. Go to the clinical supervisor, board of the hospital, and the regulating college or agency. Be direct and honest about how you were treated and demand they take action.

There is always a legal option as well if you were harmed physically and/or mentally by the grievous actions of a gaslighting physician. Whatever decision you make, above all else, do not accept this abuse. We must all speak up and speak out!

“Nothing strengthens authority so much as silence.”
Leonardo da Vinci

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.

A Grumpy Old Lady in Pain

By Rochelle Odell, PNN Contributor

As I lay once again, in pain, waiting for my small dose of pain meds to kick in, I stare at the dark ceiling, asking, begging God to please help me. There is nothing but silence around me except for the low volume of my TV.

I find my patience, what little I had, is now gone. I find myself writing a post on Facebook that perhaps did not have to be as blunt as it was or as challenging -- as even I recognized it to be. 

Am I judging others in this battle? Has my nearly 28-year battle with CRPS and it's incessant, never ending pain turned me into someone I am not thrilled about? Am I judging good people, in pain like me, too harshly at times?

I find some online comments are made with little thought or logic by others. I know and tell people there is only one person or deity that can judge anyone and that's the man upstairs, God. And in all honesty, I don't have the right to criticize anyone for what they say or do, except for liberals. Okay, cardinal rule, don't bring politics into our battle for pain relief. I am sorry.

Why do those who obviously haven't read an article or post refuse to admit that their response makes no sense? I spend a lot of time reading articles, but many don't and I feel if you can't find the time to read, don't comment. There are times I may read a post that really galls me and I respond critically, then I think of those I may have upset.

Why did I do or say what I did? I guess because like all in pain, I am tired. Tired of hurting, tired of fighting to get pain management back to where it should be for all. Especially tired of the few wannabes who think it's cool to be part of the pain community -- a community we would all give anything not to be a part of.

The very few I do challenge proudly boast of the ever-growing list of ailments that they wear as a badge of honor. They proudly state no doctor will agree or diagnose them with any of the pain diseases that they have self-diagnosed. You know the type. They have gone down the list of symptoms, convinced they surely must have it.

For shame. They honestly believe they have been wronged. Those people bother me, because there are many who suffer unrelenting pain from diseases physicians have actually diagnosed. I have been diagnosed with several and I want no part of them. I do try to stick with the CRPS only. It was the first and worst of what ails me.

ROCHELLE ODELL

Adding more or reading off what I call our laundry list of ailments won't change my low dose of opioid pain medication. My pain management PA is very sweet and compassionate, but we all know that high doses of opioids are nothing but a memory. A memory of when we used to function. I want my life back without pain and without needing medication. We all want our lives back... period!

I have my life friends who I’ve known since childhood, and new friends I’ve met in the pain community. Like my family, they mean the world to me. Each person brings something I may need or I bring something to them that they need. Pain brought us together. And if it weren't for pain, our paths would never have crossed.

My life has spanned seven decades, sometimes flying by and other times dragging by ever so slowly. The adventures I had, the experiences, I wouldn't trade for anything. I am thankful to have experienced what I did. Too many pain patients don't, especially younger ones. All they know is pain. They can only dream of traveling the world like I did. Those of us who had a life before pain were able to experience places, people and things. The memories are bittersweet.

I suppose at 73 that I am old, very opinionated and faced with the reality God can come knocking on my door anytime. Although for some reason the age of 93 is set in my mind when he will take me. Can't imagine living in this pain for twenty more years.

I have learned in this pain journey that I don't have to win every argument. I don't have to win every point. That if I ignore an annoying Facebook post and simply log off, I don't develop a killer stress headache trying to prove I was right. Being right all the time makes for a probably obnoxious person. I don't want to be that way, I really don't, but it is my reality, my life, me.

When thinking of love, I have loved and have been in love. Do I want to be married again? Odds are no. Like most, I don't want to live my golden years alone but I have become so set in my ways, set in my routine, set in how I choose to live any day my way. If I want to wear my jammies all day and not comb my hair, I can. If another person was around, I would have expectations placed on me I may not want.

But I also get so tired of battling pain with no real source of help I can depend on. I have only me to depend on. I am not the only one alone and we do hurt the most.

If my pain is severe and I want to cry, I can, with no explanations. Although if I do cry my little sidekick Maggie, an 8-year-old dachshund, gets right next to my face crying with me. Don't have any humans that sit next to me and cry with me, although I know of some sweet pain friends who would if I asked. Little Maggie has been so vocal. I look at her and ask do I really sound that bad, that pathetic? Yes!

I don't want to come across as judgmental or too critical. I don't want to be the mean old lady in the neighborhood. But you know what? Living in pain, alone for close to 28 years, well, if the shoe fits...

If my comments come across as mean, try to remember pain has changed us all. I see that in the pain community. 'A' can't stand 'B' and 'B' is thoroughly disgusted with 'C.' Meanwhile, 'D' shakes their head asking why? Why do we say and act in ways that may not be nice?

Guess I will set the timer on my TV, pray to God one more time to please take my pain away, and close my eyes hoping sleep comes, if even for a couple of hours. And pray those around me understand why this grumpy old woman says what she does.

Rochelle Odell lives in California.

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

COVID-19 Vaccines May Be Risky for People with Chronic Illness

By Roger Chriss, PNN Columnist

Covid-19 vaccine researchers reported good news this week. Pfizer and Moderna both announced encouraging efficacy data and will soon submit applications to the Food and Drug Administration for emergency use authorizations.

Moderna reported that its vaccine was 94.5% effective in a Phase 3 trial of more than 30,000 participants. Similarly, Pfizer’s vaccine had an efficacy rate of over 90 percent, with only 94 confirmed cases of COVID-19 in a study that included over 43,000 volunteers.

Both of these vaccines are based on mRNA technology, a genetic approach to vaccines that directs protein production throughout the body. AstraZeneca took a more conventional approach with its vaccine and just reported promising Phase 2 trial results.

There are of course important questions to sort out, including long-term efficacy and safety. This latter point is particularly important for people with chronic illness.

The vaccine trials have been run with volunteers, who may be more health conscious and healthier than the population at large, and people with specific disorders are excluded. As a result, safety issues for people in treatment for active cancer, people with autoimmune diseases, and people with rare genetic disorders are unclear.

“We also don't know for sure whether this vaccine is safe and effective in different types of people, such as pregnant women, the elderly, or those with a chronic illness,” MedicalXpress reported. “Once a vaccine is deployed ‘in the real world,’ we'll start to understand its true effectiveness. In practice, this is likely to be different to its efficacy in highly controlled clinical trials.”

Specific disorders sometimes require avoiding certain vaccines. The CDC maintains a comprehensive list of vaccine contraindications and precautions, including a recommendation that live virus vaccines “should not be administered to severely immunocompromised persons.”

The CDC cautions that anyone with a “weakened immune system, or has a parent, brother, or sister with a history of hereditary or congenital immune system problems” should talk to their doctor before being vaccinated. People who have had any other vaccines in the past 4 weeks should also consult with a provider first.  

The American Cancer Society recommends against live vaccines for patients getting chemotherapy or radiation treatment.

“In general, anyone with a weak immune system should not get any vaccines that contain live virus. There are a few vaccines that contain live viruses, which can sometimes cause infections in people with weak immune systems that can become life-threatening,” the Society warns.

Autoimmune disorders are also complex. The Hospital for Special Surgery warns that live vaccines “are not recommended for lupus patients, due to the increased risk of infection from the vaccine.”

Most vaccines are very safe for most people. But vaccine safety presents a big question for a small group of people with specific risk factors like cancer or chronic illness. At this point there is simply no safety data on COVID-19 vaccines in such people. Hopefully there will soon be clear answers.

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. 

Alcohol Yes, But Opioid Meds Not So Easy

By Fred Brown, Guest Columnist

Like everyone else, I have found that living through the past many months of Covid-19 has been very taxing and challenging. Fortunately, our family has been blessed. One of our daughters who works in a local hospital caught a mild case of Covid-19 and has fully recovered. The rest of us are Covid-free. 

As more and more states began to reopen their economies in the spring, I noticed an interesting phenomenon.  Why were some of the first businesses to reopen bars and lounges?   

Before becoming a chronic pain patient, I did enjoy an occasional vodka and tonic or a glass or two of wine.  But now that I am on medications to help reduce the symptoms of pain, I am not stupid enough to drink liquor.  Even during religious holidays, where small amounts of wine are customary, I will drink grape juice. 

Fellow pain patients; please do not combine your medications with any form of liquor. There is plenty of evidence that side effects from the two do not add up. They multiply! 

My objective in this column is to make a point and share an observation about alcohol. Unfortunately, this legal drug kills an estimated 88,000 Americans every year. Alcohol not only hastens the deaths of people who abuse it, but often causes the deaths of other innocent people. 

I am in no way saying that bars, lounges and liquor stores should not open. I would never say what people should or should not do.  But I must still pose the question: Is alcohol really a necessity?  I do not know. But speaking as a patient advocate, I will say that something else most certainly is: Many patients need opioid medication to help control their pain. Not to take the pain totally away, but to help reduce the symptoms and have at least some quality of life. 

Millions of people are in constant, daily pain -- and usually not through any fault of their own. There are hundreds of different diseases that cause severe pain. Or maybe there was a medical error or botched surgery that resulted in a patient having chronic pain. 

I am not going to analyze why an individual drinks alcohol. It is a legal and socially accepted practice during dinner, parties and other events, many times in celebration. But why is this drug sold so freely, while opioid medications have so many obstacles and barriers that prevent patients from obtaining them? Even when a licensed physician legally prescribes them?  

Both alcohol and opioids, when used over time, can cause people to become dependent or, in some instances, addicted. But there is a big difference between addiction and dependence that many people do not fully recognize. Briefly, let us examine the truth about both terms.   

Dependency refers to a person who has been on medication for a specific period (generally at least weeks or months). The body has developed a physical dependence on the drug and has built a tolerance to it. Pain medicine may require increases in dosage and strength over time because of the progression of the underlying medical condition or because the body has adjusted and becomes tolerant. If the medication is withdrawn rapidly, the person may suffer very unpleasant withdrawal symptoms.

Addiction is a compulsive need for and use of any habit-forming substance, such as opioids, nicotine or alcohol. It is characterized by a spectrum of well-defined behaviors that persist even when the substance use is associated with profoundly negative consequences for the user and their family.

Is there an "opioid crisis" as the media has reported? YES!  Was it primarily caused by doctors writing too many prescriptions for opioids? The answer to that question is a resounding NO!   

It is rare for a medical patient to abuse or become addicted to opioid medication. Every person processes medication differently. Their bodies metabolize medicines at different rates.  That is why the current belief in "one size fits all" solutions for pain are not acceptable. There is zero science to back it up.  

Fred Brown is an advocate for pain patient rights who has lived with degenerative disc disease, bone spurs, stenosis and other spinal problems for over two decades. Opioid medication therapy allows Fred to continue functioning and have quality of life.  

Understanding the Difference Between Prescription Fentanyl and Illicit Fentanyl

By Roger Chriss, PNN Columnist

The opioid overdose crisis is now being driven by fentanyl. But misunderstandings over what fentanyl is, where it comes from, how it is used and why have become so pervasive that they plague discourse and debate about the crisis. News reports about “fentanyl overdose deaths” appear almost daily.

October saw a particularly tragic death. As reported by the Daily Courier in Prescott, Arizona, a 14-year-old high school student died of an overdose after taking what investigators suspect was a counterfeit pill “laced with the potent narcotic painkiller fentanyl.”

The tragedy of this death cannot be overstated. Nor can thousands of other overdose fatalities caused by fentanyl. But the nature of the drug needs to be better understood if we are to prevent such deaths moving forward.

Fentanyl is not one drug. It is better thought of as a family of synthetic opioids that are structurally similar, and includes sufentanil and remifentanil. These are pharmaceutical fentanyls, used clinically as anesthetics and essential for medical procedures such as open heart surgery.

Collectively, these drugs are part of a super-family known as fentanyl analogues. There are dozens of such drugs. Some are compounds developed by pharmaceutical companies for legitimate medical use, and others are manufactured illegally for use as street drugs. These forms of fentanyl are commonly referred to as “illicitly manufactured fentanyl” by government agencies like the CDC. The DEA has classified “fentanyl-related substances” as Schedule I controlled substances, meaning they are illegal to manufacture, distribute or possess.

To make this even more complicated, the fentanyl drug carfentanil is used legally in the U.S. as a tranquilizer for elephants and other large animals. The DEA authorizes production of a minute quantity of carfentanil for veterinarians every year. But illicit carfentanil from overseas occasionally shows up on the street and causes fatal overdoses.

Further muddying matters is the new fentanyl-like street drug isotonitazene, which is known colloquially as “iso.” It is “fentanyl-like” in its risks and harms, but is not technically a fentanyl analogue. “Iso” is instead related to etonitazene. Neither of these drugs has any recognized medical use in humans.

Risks Are Very Different

In other words, there is a vast gulf between pharmaceutical fentanyl and illicitly manufactured fentanyl. The former is a tightly controlled Schedule II prescription medication, approved for use in hospitals and to treat breakthrough cancer pain. The latter is an illegal substance cooked up in illicit labs that is often added to heroin or used to make counterfeit pills, which are then sold on the street or online.

This distinction is critical for understanding the opioid overdose crisis. The risks of a prescription opioid like fentanyl when given for medical use to a legitimate patient are very different from the risks of an illicit opioid being used non-medically by a random street buyer. Importantly, the risks for medical use can be addressed and managed. The risks of illicit use are much harder to deal with and often prove fatal.

The distinction also leads to confusion. The abundance of fentanyl on the street is rarely a result of diversion, and is unrelated to the supply of pharmaceutical fentanyl. These are different drugs, much as the cocaine nasal spray recently approved by the FDA as a local anesthetic is completely separate from the cocaine bought on the street. Pain experts are now pushing for a new classification for illicit fentanyl analogues, in the hope of clarifying this difference.

But fentanyl has so saturated the street drug market that more than a name change will be needed. As Ben Westhoff explains in the book “Fentanyl, Inc.”, preventing future opioid deaths will require “sweeping new public-health initiatives, including treatment programs and campaigns to educate everyone, from users and medical providers to teachers and police, about the drugs’ dangers.”

Understanding the difference between pharmaceutical fentanyl and illicitly manufactured fentanyl is an essential step in the effort to reduce overdose deaths.

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. 

Clarifying the New Definition of Pain

By Dr. David Hanscom, PNN Columnist

What is pain? We toss the word around a lot without really understanding – or defining -- what it actually means.

There are many different types and sensory levels of pain. A loud noise is uncomfortable. Bitter tastes are unpleasant. Ringing in your ears is more than annoying. Sometimes our feelings get hurt. Physical pain can be mildly irritating or crippling.

The way every living species evolved and survives is by processing these multiple types of sensory input and interpreting them as either safe or dangerous. Then its behavior is directed towards safety and reward, while also avoiding threat.

Short-term acute pain is a warning signal that indicates there is potential damage to a specific body part. Acute pain is necessary and protective. You might even call it a gift. People who are born without a pain system don’t often survive more than 10-15 years. They can’t sense danger. Tissues are destroyed and they die of infection.

But there is nothing useful about chronic pain. When a delicately balanced signaling system is out of kilter, it can no longer accurately interpret the environment. You become trapped by incredibly unpleasant sensations. Chronic pain may be one of the worst experiences of the human condition. It interferes with physical function, social interactions, and psychological well-being.

Recently, for the first time since 1979, the International Association for the Study of Pain (IASP) revised its definition of pain. This was made necessary by neuroscience research showing that pain could arise from sources other than physical tissue damage.

Old IASP definition: "An unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage."

New IASP definition: "An unpleasant sensory and emotional experience associated with or resembling that associated with actual or potential tissue damage." 

Although the revision is a relatively small one, it has big implications for appreciating the complexity of pain. Adding the words “resembling” and “potential” allows for an expanded understanding and appreciation of pain beyond what was previously limited to actual tissue damage. 

Dropping the word "described" allows for recognition of pain in people who may not have the ability to effectively communicate their pain, such as infants, cognitively impaired individuals or those with speech and hearing disorders.  

Pain Is a Personal Experience That Should Be Respected

The new definition expands our understanding of pain in 6 key areas: 

• Pain is a personal experience that is influenced to varying degrees by biological, psychological and social factors 

• Pain cannot be inferred solely from activity in sensory neurons 

• People learn the concept of pain through their life experiences 

• Every report of pain should be respected 

• Although pain often has a protective role, it may also have adverse effects on physical function, as well as social and psychological well-being

• The inability to communicate pain does not negate the possibility that someone is feeling pain

It is logical that pain is personal because each person is genetically different and we are programmed with regards to safety vs threat by our past. If you come from a less than nurturing background, more things in the present will seem dangerous. You will spend more of your time in “high alert” – with a sustained exposure to stress hormones and inflammation that could lead to physical symptoms and illness.

Pain being a learned experience is well established in the medical literature. One classic study involved looking at childhood trauma. A scoring system was developed called the ACE score (Adverse Childhood Experiences) that looked at various kinds of physical and emotional trauma. Higher rates of chronic diseases, including chronic pain, are often associated with childhood trauma.

Since physical symptoms are created by the patient’s interaction with his or her environment, it is critical to know the person and their life circumstances. How can you solve any problem without deeply understanding it?

Unfortunately, mainstream medicine has not incorporated the last 20 years of neuroscience research into their treatment approach. It continues to recommend random simplistic treatments for a complex problem. It can’t and doesn’t work. The new IASP definition is a start and opens the door for a better treatment paradigm.

Chronic pain is solvable with a better understanding of it and informed principles behind the solutions. The starting point is for YOU to better understand it and then solve it while using the medical system as a resource. Once you take charge, it is game on.

Dr. David Hanscom is a retired spinal surgeon who now teaches back pain sufferers how to calm their nervous systems without the use of drugs or surgery. He recently launched a new website – The DOC Journey – to share his own experience with chronic pain and to offer a pathway out of mental and physical pain through mindful awareness and meditation.

Where Is the Hurry to Help People With Chronic Pain?

By Carol Levy, PNN Columnist

Why is the United States and the rest of the world in such a hurry to get a vaccine against Covid-19?

Easy to answer: The virus is a killer. As of the writing of this column, the number of American deaths stands at over 237,000 and is rising daily. The number of infected is nearing 10 million. The effect on the economy has been tremendous. The use of medical resources is stretching a fragile system even thinner.

Why aren’t we in such a hurry to develop new treatments and drugs -- specifically non-opioid medications -- for chronic pain?

Hard to answer, given the similarities. Chronic pain is a killer. Some studies have shown that those who live with moderate to severe chronic pain have higher mortality rates than those who do not have painful disorders. Studies have also shown we have higher rates of suicide.

The economic costs of chronic pain in the U.S. are enormous. In 2010, estimates of lost productivity due to pain ranged from $299 to $335 billion. The total cost to the country was estimated to be up to $635 billion, more than the annual costs of heart disease, cancer and diabetes.

Treating chronic pain is also a burden on the health care system. Pain is one of the main reasons for medical appointments. We are often bounced from specialist to specialist to specialist – who often have difficulty diagnosing us or don’t want to be bothered treating us, especially in the face of the “opioid crisis.” The stress of untreated pain often leads to other health issues and diseases, which result in the use of even more medical resources.

Covid is contagious. That makes it more dangerous than chronic pain.

But it seems pain patients are also viewed as contagious. We’re often blamed as the major cause of the opioid epidemic. We allegedly abuse our prescribed opioids or give or sell them to others. We are so careless that others steal them from us. We are the “superspreaders.”

If Covid requires a quick answer due to its deadliness and economic and societal costs, then so too does the epidemic of chronic pain.

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.”

How to Appeal a Denied Health Insurance Claim

By Barby Ingle, PNN columnist

Most pain patients rely on their healthcare providers to appeal insurance company denial of care decisions for them. Some providers are now charging fees to do the appeal paperwork for a patient.

I have found that when I handled the appeal myself, I am often able to get coverage for what I needed and in a timelier manner. I get that this is a daunting process. Many insurers seem to deny coverage and then wait for the appeal. Only about 20% of us follow through on the appeals for a variety of reasons. But it can be done.

At the end of this article is a sample of the letter I send to my insurance company when I run into a situation where the prior authorization has either taken too long (more than a few days) or has been denied.

I start by including copies of my medical records that pertain to why I need a procedure, durable medical equipment or medication. I have kept all of my medical records going back to 2002 in 3-inch binders. I now have 10 binders full, and have them organized by provider and date of service. Keeping good medical records is key to filing an appeal, so you don’t have to start from scratch.  

It can be very helpful if you also attach 3-5 clinical studies that show the effectiveness of what you are requesting working for others with your condition. Try to use studies completed within the past 5 years and with an N of at least 500 (number of participants). Two places where you can look up studies are ClinicalTrials.gov and MediFind.

I know that finding a study can be quite tough for those with ultra-rare and rare medical conditions. If you fall into that category, mention in your letter that the treatment may still be worth a shot and save you from future medical bills and procedures – and help the insurance company as well.

Here’s a sample letter to use when appealing:

Date

Name

Insurance Company Name

Address

City, State ZIP

Re: Patient's Name, Type of Coverage, Group number/Policy number

Dear (contact person at insurance company),

Please accept this letter as my appeal to (insurer’s name) decision to deny coverage for (state the name of the specific procedure denied). It is my understanding based on your letter of denial dated (insert date) that this procedure has been denied because:

(Quote the specific reason for the denial stated in denial letter)

I was diagnosed with (disease) on (date). Currently Dr. (name) believes that I will significantly benefit from (state procedure name). Please see the enclosed letter from Dr. (name) that discusses my medical history in more detail.

I believe that I am attaching additional information that you did not have at the time of your initial review. I have also included with this letter, a letter from Dr. (name) from (name of treating facility). Dr. (name) is a specialist in (name of specialty). (His/her) letter discusses the procedure in more detail. Also included are additional medical records and several journal articles explaining the procedure and the expected results.

Based on this information, I am asking that you reconsider your previous decision and allow coverage for the procedure Dr. (name) outlines in his letter. The treatment is scheduled to begin on (date). Should you require additional information, please do not hesitate to contact me at (phone number). I look forward to hearing from you in the near future.

Sincerely,

Your name

I want you to have more concrete chances to get the care you need covered. I know that it will take work and won’t always be easy. It will take energy, which most of us already have challenges with.

I like to think about my future when I am in the middle of the appeal process. What would getting this insurance coverage mean to me? More life? A better life? Then it is worth it for me.  

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

Scanxiety: My Fear of Cancer Recurrence

By Cynthia Toussaint, PNN Columnist

Several months back, For Grace’s conference planning committee invited our webcaster, Rich, to join the call to talk logistics about our upcoming virtual “Pain-Cancer Connection” event. Rich is a long-time cancer survivor who’s dealt with decades of chronic pain as a result of his aggressive treatment.

It soothed me to talk with him because I was in the midst of brutal chemotherapy. I could relate when Rich shared his nightmare of getting one infusion too many and lying on the floor weeping after losing much of this tongue. I also understood Rich bungie jumping off a Las Vegas building after his treatment in a quest to find something scarier than chemo.

But that ease turned to discomfort when Rich warned me, “Oh Cynthia, you don’t know yet. There’s so much anxiety that comes with cancer.”

While I’ve long been aware that if triple-negative breast cancer returns, it tends to do so more aggressively in the first year or two, Rich was my introduction to “scanxiety.” We cancer survivors live in often paralyzing fear of a recurrence, one that will likely end us. In fact, I was recently stunned to hear a breast cancer survivor speak publicly of her relief when the cancer returned. She preferred to battle the disease again rather than the anxiety.

Now after sweating bullets through my first post-remission imaging, I can’t help but wonder how much scanxiety is reinforced by our broken healthcare system’s reliance on an endless stream of patients whose wellness would pose a threat to their business model.

I’ve said it before and I’ll say it again: the cancer industry thrives on a culture of fear, intentional or not. I’m certain that’s why patients gratefully say “yes” to every treatment offered without blinking. And that’s why I was looked at like I had two heads when I questioned every proposed therapy, relied on my own research, did everything integratively and said “no” to most of my provider’s drugs, scans and (over) treatments.

Sadly, my scanxiety began the moment I attained remission. My oncology surgeon -- who’s still terrified because I didn’t go with her standard-of-care surgery, even though studies support that as a complete responder I had a better chance at surviving without it – told me to do twice weekly breast exams. She then attempted to comfort me by assuring we’d do surgery after the cancer grew back. Those hyper-vigilant exams made me so tender my coordinating nurse told me to back off.

As my initial every-three-month imaging neared, scanxiety reared its ugly head and seriously messed with my health. I stopped sleeping restoratively and was plagued by nightmares. Obsessing on the worst outcome, I started getting severe headaches while my IBS went through the roof.

My terror went into hyper-drive when I found an inflamed lymph node in my neck, the same side as my former tumor. This fright didn’t just infect the patient.  John developed body-wide hives that looked like eczema on steroids, and my close girlfriends felt like they were having nervous breakdowns.

After my breast scan was clean, I rejoiced with John about how we deliberately made all the right choices. My surgeon broke up the party when she entered the examining room voicing her concern about my neck lymph node. Due to its location being a few inches higher than my breast area and healthcare being its dysfunctional self (every department can only scan a small area of the body), I had to wait another WEEK to find out if the cancer had metastasized.

During that soul-rattling scan the imaging technician said the node was abnormal and that I’d hear from my doctor soon. While John wheeled me to the car, I lost my shit and began screaming in the parking garage. I knew “abnormal” meant I was going to die and that six grueling months of chemotherapy hadn’t helped me in the least. How could I have been so wrong?!

I continued screaming in the car until my screamer gave out, while my stomach knotted and head throbbed. Mercifully, my doctor’s call late the next day told me all was clear. That both relieved and angered me; relief because I was assured another three months on the planet, but deeply pissed off because this healthcare-induced trauma was majorly messing with my cancer-fighting terrain. I make it my priority to practice healthy life-style choices to keep my body and mind well and in harmony.

Toxic Medicine

But the body keeps the score. After that last scan, I got a chemo-induced bladder infection from hell, one that’s still knocking me out despite a week on Cipro. With this infection that appears to be moving into my kidneys, multiple chemo side effects have re-roosted; fatigue, heavy heart throbbing, tinnitus and labored breathing. I find myself in the midst of my most recent outcome of fear-based medicine, and I remain snared in their illness-inducing, money making system.    

Deeper reflection leads me to believe that even my “innocuous” port flushes are part of this web of toxic medicine. Every seven weeks (though they push for four), I visit the infusion center where the nurses honestly seem put off, even hostile, that I’m doing well, smiling and in good spirits.

Apparently my role is to be fearful, inferior and vulnerable, and my upbeat, empowered demeanor rattles them. Rather than celebrating winning my life back or chiming in about simple pleasures like fashion and hair color, they drill me about how my post-treatment is going (what post-treatment?!) and what horrors my next scan might bring. My medical oncologist there is so buried in the fear culture, I schedule my appointments to avoid him.

Breathe.

Thankfully, I saw my saint of an integrative doctor last week who set me straight. Dr. Taw was visibly disturbed when I shared my run-ins with these healthcare providers, and was concerned that their behavior might stir things up and create cancer sparking “stagnation” in my body. Several times, he gave me his full support to stay away from these toxic people as much as possible to hold wellness. I couldn’t agree more.

Still, I am wary of my next scan. Despite every logical indicator telling me I’ll likely be A-ok, these people and their diet of fear embed me with dread. I see more than ever that this doesn’t just apply to my last year plus of cancer care; it also applies to my 38-year wrangling with high-impact pain. These western medicine devotees, while they claim to be healers, are the polar opposite for me. And their negative energy creates illness, rather than mitigating it.

Let’s not have to take a bungie jump off a building to overcome our latest medically-induced trauma. I implore you to stay away from these healthcare providers and their dysfunctional, money-based system as much as possible. To be fair, they do some good – but by a long measure, they hurt us beyond repair, again and again.  And again.

Please seek out integrative healing that is non-invasive and wellness (rather than fear) based. Your body and mind will thank you.  

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

I Deserve To Have My Chronic Pain Managed

By Marguerite Morgan, Guest Columnist

I have lived with chronic pain the majority of my 53 years of life. It’s hard to make the people that cross my path understand that I cannot do things I used to take for granted. Things like attending concerts and other venues, or keeping my home up and my appearance up are the things that I miss and bother me the most. 

Those I love have seen my decline and know that I am truly suffering. The only reason I am suffering is because of the lies told by the CDC. They admitted that their statistics were off regarding overdoses because they combined deaths caused by illegal drugs with those that were prescribed.

These so-called experts turned on those of us who take our opioid medication responsibly and have blamed us for the addiction issues in this country. Laws were made and bills were passed on this false information and now there are millions suffering. 

It's not right that our government continues to uphold the CDC opioid guideline, knowing that we are suffering and medications that will help are denied to us. We are treated like garbage for illnesses, diseases and injuries that doctors can't treat without fear of being raided by the DEA. Their medical licenses are way more important than our quality of life.

Nothing seems to be changing either and it probably won't in my lifetime. But I will continue to fight for those who need advocacy because there are a few good doctors willing to take a chance. 

MARGUERITE MORGAN

We are dying every day either by suicide or from being cut off from pain medication. Our hearts quit because they just can't take the pain that causes.

I just want to know why those that die from abusing drugs intentionally are more important than those of us who take our prescribed medication as directed. It seems life has truly turned upside down and nothing seems right anymore.

I suffer from intractable pain caused by an injury to my spine. I also have inflammatory rheumatoid arthritis, osteoarthritis, Addison’s disease, fibromyalgia and degenerative disc disease, to name just a few of my painful conditions.

I deserve to have this pain managed. I deserve to enjoy and take part in life, instead of just seeing it pass me by through my living room window. 

Marguerite Morgan lives in Washington state.

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

Healthcare Is a Human Right That We Deserve

By Jennifer Kain Kilgore, PNN columnist

I shouldn’t have to write this. But here I am because of headlines like these:

“FTC Refunds Almost $3.9 Million to Purchasers of Deceptively Advertised Quell Wearable Pain-Relief Device”

My body went numb after reading that. The Quell, which I wore for four years, that I blogged about, that I recommended to friends and family? That Quell?

The Federal Trade Commission slapped parent company NeuroMetrix for deceptive advertising. Specifically, the company was cited for claiming the Quell works throughout the whole body and not just where it’s worn.

“NeuroMetrix settled the case – without admitting or denying the allegations – for $4 million. The company also agreed to stop claiming that Quell provides relief for chronic or severe pain beyond the knee area where the device is worn,” PNN reported.

Soon enough I was receiving texts -- “Is this true?” “Does it not work?”

It worked for me, but that’s not why I’m writing this. My testimonial is still and will remain on NeuroMetrix’s website. The company didn’t ask me to come to their defense. Despite the bad press, that gadget worked for me.

NEUROMETRIX IMAGE

Getting a $50 refund from NeuroMetrix in my PayPal account, though? The company’s silence and tacit admission made a helpless rage boil inside where anger has been simmering for weeks and months and years.

It made me as angry as when desperate pain patients called my law office, asking if I would draft legislation or talk sense to their doctors. Or when a genuinely good product came on the market but took advantage of customers. Or when the Sackler family didn’t go to prison after their pharmaceuticals created the conditions for the national opioid epidemic to truly explode. That bubbling anger began to rise.

Where should I direct this rage? At the callers? At the makers of the SpineGym, who took their crowdsourced money and failed to deliver on their promises? At the Sacklers? No, of course not. It’s not about them. My anger is bigger than that.

I shouldn’t have to write a reaction piece about the FTC’s decision. I shouldn’t have to draft laws to change a healthcare system in which pain patients are discounted, dismissed, and even overlooked.  Sometimes our limitations and physical pain prevent us from seeking the help we need.  

I shouldn’t have had to write for Pain News Network in the first place, though I’m thankful for the opportunity to do so. I became a columnist in order to try all the gadgets claiming to cure back and neck pain. If my doctors wouldn’t help me, I would help myself.

And there it is.

A record-breaking number of citizens have already voted. Despite their overwhelming voices, a Supreme Court justice was just appointed whose legal interpretation could dismantle the Affordable Care Act, which is on the Supreme Court Docket on November 10, just seven days after the most important election in history.

If you’re reading this, health insurance is crucially important to you or someone you love. Right now, our president’s legal team is in court attempting to kill the ACA without any kind of replacement during a global pandemic that has killed over 231,000 Americans.

But that’s not why I’m writing this.

I used to blog about my journey through the healthcare system. By the time I’d graduated from the Quell to an implanted spinal cord stimulator (which also works), I’d exhausted myself. It was time to focus on finally, finally healing. You know, being a normal person again.

The spinal cord stimulator -- controversial for sure, and not a surefire bet -- ended up working beyond my wildest dreams. Even though I’ve pulled on wires and scar tissue, my life has been partially restored. My doctor said the Quell was a good indicator as to whether a SCS would even work. If the Quell helped, so would a spinal cord stimulator.  

Before the SCS, I wasn’t able to consistently work as an attorney; I could barely leave my house. I was dependent on my husband for everything from insurance to carrying bags of groceries.

After the SCS, I can do yoga and pilates. I can lift laundry baskets. I can go to work and sit through a two-hour deposition. I can be an actual person again.

But that’s not why I’m writing this.

I shouldn’t have spent sixteen years of my life begging for help. I shouldn’t have to become a patient advocate and a writer for an online publication because I couldn’t otherwise afford pain-relief devices.

I shouldn’t have to write this.

I shouldn’t have to fight my insurance company to get my treatments covered. I shouldn’t have to stagger bill payments to various hospitals so as not to overdraft my account. I shouldn’t be paying for my spinal cord stimulator more than a year after its implantation.

I shouldn’t -- we shouldn’t -- have to do these things. We shouldn’t have to fight so hard to live in what’s supposedly the greatest country on earth.  What’s so great about living in fear? Fear of the unknown, the future, access to healthcare resources, and effective treatments? I’ve lived in fear for long enough, and so have you.

I shouldn’t be here. You shouldn’t be here, reading this. This website shouldn’t exist, and we shouldn’t have to fight so hard. But one in five Americans adults has chronic pain, and something must be done.

Healthcare is a human right, and we deserve it.  So VOTE.  Protect your loved ones by protecting healthcare.

Jennifer Kain Kilgore is an associate attorney at MALIS|LAW, working in civil litigation. She has chronic back and neck pain after two car accidents. 

U.S. in ‘Fragile State’ as Election Nears

By Roger Chriss, PNN Columnist

The United States is about to have its national election. And for the first time in American history, the election will happen amid a pandemic.

The country is deeply divided, unsure about how to address the coronavirus, what to do about health insurance or drug overdoses, and which way to move forward on social justice, racial inequality and socioeconomic divisions.

In the realm of public health, the coronavirus predominates as the country faces another surge in infections, with a record count of nearly 100,000 new cases Friday. Hospitalizations and deaths are rising across the nation.

“As we enter the coming months, which include a national election and many holidays, our country is in a fragile state. Many people are understandably worried about the days and weeks ahead,” Children’s Hospital of Philadelphia warned in a blog post.

“Wearing masks and resisting the temptation to take part in medium to large gatherings that include people who are not members of your immediate family/small bubble are things we can and must do to protect ourselves and our loved ones. We encourage all to be safe out there, and to get out and vote safely, if you have not done so already.”

In addition to the pandemic, overdose deaths are rising again, largely due to illicit fentanyl and other street drugs. The United Nations reports that synthetic cannabinoids are also a rising threat. And if all this weren’t enough, Washington state is seeing an invasion of murder hornets.

“Whatever the outcome of the election, the coming winter will be difficult. And whoever occupies the White House on January 21 will probably have to deal with another major epidemic before his term is over,” journalist Ed Yong writes in the Atlantic. “The U.S. has now clearly seen what happens when a pandemic occurs under Trump. It is an experiment that no one should ever want to rerun.”

The election process itself is fraught this year. NPR is reporting that hundreds of polling places in Iowa will be closed on Election Day due to the coronavirus. Voting for people quarantined or newly diagnosed with Covid-19 could also be difficult if they can’t vote by mail.

The election outcome is uncomfortably uncertain. Politico assembled a day-by-day guide to all the possible outcomes from November 3 to January 20, from recounts to Supreme Court intervention. If President Trump loses, Politico also put together a list of what he might do during his remaining days in office, from mass pardons to a revenge campaign against the “Deep State.”

Election Pain

This is the stuff that nightmares are made of. Some people are abandoning social media, going off Twitter or internet discussion forums, or deleting news apps and silencing their phones. Others are engaging in “radical self-care” by playing video games or binging on old TV shows all day long, or hibernating their way to November 4. There is no end of online discussion about how to get offline and avoid discussion of the pandemic, politics and election outcomes.

But after the election, some things will not change. People with chronic disorders will still have the same diagnoses, the same treatment options, and the same prognoses as they did before. Election outcomes matter, but not for some things.  

Most people with chronic painful disorders have already survived far worse than the coronavirus or this election. Election pain may lead to a sleepless night or two for some people, but chronic pain can lead to sleepless nights for years. Insomnia is a routine part of small fiber neuropathy, complex regional pain syndrome and ankylosing spondylitis.

Election pain may create digestive problems like GERD or IBS for some people, but chronic painful disorders can include a lifetime of gastrointestinal distress. The ability to eat comfortably and digest reliably is not something that people with Ehlers-Danlos syndrome, pancreatitis or inflammatory bowel disease enjoy.

Election pain may make the time after November 3 seem uncertain, but for people with disorders like epilepsy, multiple sclerosis or sickle cell disease, that uncertainty is normal. Life is never stable when your body may misfire at any time.

Election pain may make life even harder for people with these disorders. The best we can do is stick to our routines and stay focused on our health. Come the results of the election, we can be gracious. And if all else fails and everything is hellish, just keep going.

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.