10 Ways To Survive Home Isolation

By Barby Ingle, PNN Columnist

On November 2nd last year, I fell very ill. It was a Saturday evening. I was fine and then I was having trouble breathing. Two days later I was diagnosed with pneumonia and on the 18th I was told that I had Valley Fever.

My immune system is already weak due to multiple chronic conditions, and catching any kind of acute cold or flu is life-threatening for me. I was put on a breathing machine, which was new for me, and advised to stay home to avoid further infections.

Being homebound is something I have been doing for a very long time. By the time Covid-19 struck and a push for social and physical distancing began, I had already been isolated for years and ultra-isolated since November. I still have Valley Fever symptoms, which are similar to coronavirus, and still have a mass on my upper right lung. I have tested negative for both Covid-19 and its antibodies.

Now that being physically isolated is a thing, many are asking me for advice on what to do or how to make it through self-quarantine. Spending so much time at home, I’ve found that I have a lot of energy and have to turn to other activities to keep my spirits up. These are what I’ve come up with.

1. Catch up on reading: Not everyone is ready to write a book, but reading one is something most of us can do. Expand your mind and educational knowledge by reading about subjects that have interested you and would like to learn more about.

2. Dance party for one: It doesn’t matter if you can dance or not, no one is watching! Just put on some music and move your body. Movement can help circulate blood, increase endorphins and improve your mood. I always love a good spontaneous dance party!

3. Games on your phone: For this you need a smart phone. My personal games are the free apps that keep my mind working. I like Solitaire, Drop the Number, Pull the Pin and Woodoku.

4. Netflix: I never saw the need for Netflix until I had it. When people reached out and asked what they could do to help, this was one of the tools someone set us up with. We have watched more TV shows in the last 9 months than the previous 5 years. Everything from great dramas like Ozark and The 100, to comedies like You’re Dead To Me, Shameless and Happy! I’ve also enjoyed reality shows such as 100 Humans, Alone and Naked and Afraid.

5. Organize your medical records: For those of you who have thick case file like me, what better time to order and organize your medical records? You can also address any mistakes in those records and be better prepared for future care by staying organized.

6. Social media: We may be physically distant, but socially we can still be engaged. When I am up to it, I post updates. I’ve also been sharing messages and articles a lot more since I am not creating as much content during this period. I believe my followers like it and I know the people I share appreciate it as well.

7. Start a gratitude journal: Isolation can lead to negative feelings, such as being scared, anxious, mad and sad. This can have an impact on you and your loved ones. Taking the time to write a gratitude list of the positive things in your life and the things you can still do (even if it is just taking a shower) can be a good tool for keeping a positive attitude. A gratitude journal can also be something you look back on to help see all the good in your life, even in the toughest of times.

8. Start a new project: You could learn a new hobby, craft or language, or develop your appreciation for art. They say 21 days of something will improve your skills. When will you ever have this much time to do something, even if it is just a little each day?  

9. Interview family members: With the passing of all of my grandparents and parents in recent years, I wished I had done a legacy video with each of them. I asked my mother-in-law do an interview with me and turned it into a Christmas present for both of her boys and our nephews. It’s a great way to get a living picture that is enduring, long past the time we are here on earth. It also gives us more social contact with the older members of the family.

10. Rest! This one is the best for me. Because of how tired I am, I give myself permission to rest as much as possible and get nothing much done. My days are filled with resting and relaxing most of the time. There is no pressure or stress to do it any other way.

Do you have other ideas on how to survive isolation and stay engaged with the world?  Please share your thoughts in the comment section below.

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. 

Forced Opioid Tapering Is Risky and Unethical

By Roger Chriss, PNN Columnist

Prescription opioid use has come way down from its peak in 2012. Fewer people receive an initial opioid prescription, pill counts have been lowered, and more people are being taken off opioids.  The American Medical Association recently reported that there was a 37% decrease in opioid prescribing from 2014 to 2019.

The goal of this was to reduce the harms associated with opioid pain medication amid an ongoing drug overdose crisis. But there is no justification for forced opioid tapers. As PNN reported last year, outcomes for patients taken off opioids are not necessarily good. And despite an ongoing focus on reducing prescription opioid use, there is still no established deprescribing strategy or method.

A new study looked at a dozen randomized controlled trials for deprescribing opioids for chronic non-cancer pain. Researchers found that reducing or discontinuing treatment did not reduce opioid use in the intermediate term. It also didn’t increase the number of patients who stopped taking opioids.

After looking at the evidence, the authors of the systematic review concluded that the were unable to draw “firm conclusions to recommend any one opioid-analgesic-deprescribing strategy in patients with chronic pain."

Ethically Unjustified

But even if we knew how to taper patients on prescription opioids, it would still not be ethical to do so. Forced tapers offer relatively few benefits for the patient and may carry serious harms. Policies promoting opioid tapering have nonetheless proliferated in recent years, including one in Oregon that was tabled after a public outcry.

In a recent paper in The Journal of Law, Medicine & Ethics, physicians Stefan Kertesz, Ajay Manhapra, and Adam Gordon argued against the forced tapering policies being promoted by public agencies.

“Neither the 2016 Guideline issued by the Centers for Disease Control and Prevention nor clinical evidence can justify or promote such policies as safe or effective,” they said.

Specifically, Kertesz and his colleagues said “the provider is trained never to treat a patient as merely a means to an end.” In other words, involuntary tapers with the goal of satisfying prescribing metrics or state-mandated statistics are unethical.

A more detailed analysis of the ethics of deprescribing is taken up by Travis Rieder, PhD, author of the book, “In Pain: A Bioethicist’s Personal Struggle with Opioids.” In a new commentary in the AMA Journal of Ethics, Rieder concludes that nonconsensual tapering is “clinically and ethically wrong” because it exposes so-called legacy patients who are dependent on opioids to uncontrolled pain and withdrawal.

“Forcibly tapering otherwise stable patients off high-dose, chronic opioid therapy reveals that this practice might have an effect that is the opposite of what public health is calling for: it may be a harm expanding intervention, exposing those who have long received opioid medications variously to worsened pain, withdrawal, social instability amidst untreated dependence, or loss of medical care relationships,” Rieder said.

“Taking such risks into account, continuing to prescribe high-dose opioid therapy for a legacy patient does not clearly constitute ethical or legal misprescribing.”

‘Large-Scale Social and Medical Experiment’

There is little doubt that prescription opioids involve serious risks and lead to harm for some patients. In some urgent cases, a forced taper may be justifiable in light of specific risks to an individual. But in general, forced tapers not only introduce new risks and create new harms, but they also damage the doctor-patient relationship and deny the patient’s status as an individual.

Stanford pain psychologist Beth Darnall, PhD, calls forced tapering a “large-scale social and medical experiment” being conducted without sufficient evidence on how to do it the right way.

“You may have a patient that has been on a stable dose of opioids for 10 years, and then you start de-prescribing. We are now exposing them to new risks for opioid overdose, for suicidality, for actual suicide, for withdrawal symptoms, for increased pain,” Darnall told The Guardian.

It's worth noting that both Darnall and Rieder were recently named to a new CDC panel that will advise the agency as it prepares to update its 2016 opioid prescribing guideline.

Physicians already have a wide variety of tools to reduce risk and improve outcomes without resorting to the ethically unjustifiable approach of forced tapers. It’s time to emphasize those tools and underscore the ethical importance of patient outcomes.

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. 

What If You Can’t Wear a Face Mask?

By Carol Levy, PNN Columnist

Of all the possible repercussions of trigeminal neuralgia -- all the things it keeps me from doing because of the pain -- I never thought it could make me a possible danger to others.

But suddenly I am. Because I cannot wear a face mask.

Because of trigeminal neuralgia (TN), I cannot tolerate any touch to the affected side of my face. The weight of a mask not only causes that side of my face to swell, as though I had been punched, it causes severe pain.

I assumed that everyone with TN has the same issue, probably not the swelling, but definitely the increased pain. I went to our local online TN support group expecting posts such as, “I am worried. I can't mask. What should I do?”

But there was only one post with a link to an article entitled, “What to Do If You Can't Wear a Face Mask.” I was excited expecting answers, but it was not about what to do if you can't wear a mask — more about ways that you could wear an alternative facial covering like a bandana. Nothing about medical or psychological issues that make wearing one difficult.

The article concluded with a list of 3 groups the CDC says should not wear a mask: Toddlers and babies under the age of 2, people with a health condition that causes trouble breathing, and those who can’t remove a face mask without help.

Omitted completely was any mention of medical issues like mine or those who cannot tolerate the touch of a mask against their skin. Don’t fit it into any of the 3 groups? The advice from an emergency room nurse was to stay at home as much as possible, rely on delivery services or loved ones to get essential items, and only go out when you won’t encounter other people. 

That’s good advice. But I, like many seniors and the disabled, have no one to do my shopping or other errands for me. I don’t have the funds to go the delivery route and I can’t go out at night, because my cataracts make night driving dangerous.

So I go out during the day. I made a t-shirt which reads, front and back, “Can’t mask due to medical issue. Trigeminal neuralgia.” Thankfully, people have been very nice to me, with one person even saying, “I am so sorry you need to wear that shirt.”

Recently, I went to a farmers market. A woman looked at me and got visibly excited. Instead of a tongue lashing, she said, “You have that? So does my husband.”

We had a nice conversation, but for all our similarities, he was able to mask. Which takes me back to my first point.

How often have we lamented that no one understands? That our families, friends and colleagues don’t accept why we so often have to say ‘no’ to extra work, a day at the park or other invitations?

Because of the masking issue, I learned maybe we too don’t always understand. I have seen people in support groups question someone else's report of their pain, how it feels, where it is located, and how they experience it. I never quite understood how anyone could question someone else's pain report.

Now I get it. Our diagnoses may be the same, but our pain experience may be very different. Mine may well not be the same as yours in how it feels, how I experience it or how it manifests itself in my body.

This was a new and important lesson for me. About the only time I can say, “Thank you, coronavirus.”

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.

Genetic Studies Could Pave the Way to New Pain Treatments

By Dr. Lynn Webster, PNN Columnist

Millions of Americans order DNA test kits to determine their ancestries. Knowing where you come from can be entertaining.  However, DNA testing can also help identify your risk of developing some diseases, including chronic pain.

Prenatal testing for genetic disorders is common. But genetic testing is also increasingly used to determine the risk of developing certain diseases or potential responses to specific drugs.

Currently, little is known about how to use genes to make an individual more or less sensitive to pain, or to learn the likelihood that someone will respond in a particular way to an analgesic based on their genetics. The good news is that we are on the cusp of gaining more information about the genes that control pain and pain treatments, and that knowledge should allow us to develop targeted pain therapies.

Most physicians still believe that everyone experiences pain in the same way. Research recently published in Current Biology discovered a gene—the so-called "Neanderthal gene"—that is associated with increased sensitivity to pain. Recognizing that a mutation of a specific gene can influence pain perception may be illuminating for many members of the medical profession.

The Individuality of Pain

Pain specialists have known for a long time that given the same stimulus, some people feel more pain than others. The truth is, there are several genes besides the Neanderthal gene that determine how an individual experiences pain. Some genes increase our sensitivity to pain, while other genes decrease it. Some genes influence how pain is processed, while other genes determine an individual's response to an analgesic.

The ability for an analgesic to provide pain relief in an individual is partially determined by the genetics of the receptor to which the pain medication binds. These genes are different from pain-sensitivity genes. For example, oxycodone may be very effective in relieving pain for one individual, but only partially effective for another.

Optimal pain relief requires recognition that each individual responds uniquely to a given analgesic. Doctors are beginning to provide gene therapy for cancer patients. Advancements in research may someday allow us to do the same for patients with pain.

The array of pain responses to the same stimulus is a major reason why one-size-fits-all dosing of pain medications is flawed. A given dose may leave some patients undertreated and others over-treated. Unfortunately, regulators who set arbitrary dose limits fail to understand or consider this biologic variability. 

Differing clinical responses to pain stimuli and medications underscore the need to individualize therapy. Knowing more about the biology of pain can help us to understand each individual’s response to painful stimuli and the variable response to any therapy.

The Heredity Nature of Pain

How we experience pain is a result of both environmental and genetic features. The genetic factors are what we inherit. Environmental factors — which we develop rather than inherit — include cultural attitudes, emotions, and individual responses to stress. Our personality and life’s experiences are included in the environmental factors that contribute to our experience of pain. Therefore, pain is a result of genetic and environmental interactions. Both can make an individual more or less sensitive to stimuli or analgesia. It is a complex and dynamic process.

The so-called Neanderthal gene is not a new discovery but was newly recognized in Neanderthals. The discovery is interesting, because it implies the gene has an evolutionary purpose. The gene is known as SCN9. There are several pain syndromes associated with the genetic mutations of the SCN9 gene, including some types of back pain and sciatica. Mutations of this gene can result in the total absence of pain or a heightened pain expression. The type of mutation determines the phenotype (or personal characteristics) of our response to a painful stimulus.

The Genetics of Analgesia

It is unclear how Neanderthals benefited biologically from increased pain sensitivity. As we know, acute pain elicits an alarm and is considered protective. It teaches us to avoid dangers that can threaten our life, and prevents us from walking on a broken leg until it heals sufficiently to bear our weight.

Evolution may not have been concerned about the effects of chronic pain. The Neanderthals' limited life expectancy, and the fact that their survival depended on strong physical conditioning, may have made chronic pain a non-issue. Chronic pain may have made survival difficult, or even impossible, for the Neanderthals.

The recent discovery that Neanderthals had the SCN9 gene should not be surprising, given the fact that modern humans shared a common ancestor with Neanderthals. The Neanderthal gene study is of particular interest to me, because I am working with several companies that are exploring potential drugs to affect the function of the SCN9 gene. The companies have different approaches, but they all are trying to find a way to dial down an individual's sensitivity to painful stimuli.

Since the SCN9 gene can be responsible for the total absence of all pain, as well as several extreme forms of pain, it may be reasonable to target the SCN9 gene to modulate pain.

My hope is that manipulation of the SCN9 gene will reduce pain sensitivity, making it easier to control pain by adjusting the dose and type of drug we prescribe.

It is possible one or more drugs that target the SCN9 gene will be available within the next 4-6 years. If that occurs, it could be game changer for people in pain. We can then thank our Neanderthal ancestors for the evolutionary gift. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

The Wisdom of CRPS: Making My Final Cancer Treatment Decision

By Cynthia Toussaint, PNN Columnist

A year ago when I got my triple-negative breast cancer diagnosis, the second dreadful thought that ran through my head – perhaps worse than the Big C – was that for any chance at survival I had to once again enter the horrific world of western medicine, a system that for decades had brought me only misery when it came to Complex Regional Pain Syndrome (CRPS).

After five months of researching and contemplating what might be my most hopeful and least harmful treatment strategy, I began chemotherapy with a healthy level of trepidation. While chemo torture can only be described as indescribable, I was stunned and pleased to do well out of the gates. In fact, my tumor disappeared during week one.

In all, I miraculously completed 17 chemo infusions while escaping lethal complications, only because my integrative doctor, Dr. Malcolm Taw, kept a check on my oncologist’s over-treatment. Let it be known that when some people die from “complications of cancer,” they’re really dying from doctors taking that lethal risk due to money and/or hubris. A personal example is the week my infusion nurse refused to administer chemo because my blood count was so low she was afraid I’d get an infection and die.

My oncologist’s goal for me was 18 infusions, a ridiculously high number that I began questioning when I hit twelve. My hair was already growing back, while my body was rabidly flushing the drugs out of my system (don’t ask).

I couldn’t find anyone, in person or on the internet, who’d done more than 12 infusions. Scarier, an oncologist who filled in one morning shared with me that at no time in his career had he seen someone order so many.

My guess is that because my oncologist and the massive health system she works for are aggressively working to prove this chemo regimen is a keeper, 18 would seal the deal for their final report.   

CYNTHIA TOUSSAINT

I reluctantly marched on with this needless torture for one reason. My oncologist fed me a steady diet of fear, western medicine at its best.

To keep me in line, I dealt with verbal assaults like, “Your cancer’s going to grow right back if you take a week off.” Another was the golden oldie, “I don’t like your questions!” And after the last infusion went south, I was speared with, “All of my other patients want to live.”

The reason I didn’t graduate at the top of my chemo class of one was that, while driving home from number 17, my hands and feet felt like they were bursting into flames while fireworks popped. When John got me upstairs to our condo, he took a picture of the beet-red appendages, my expression frighteningly pale.

After being hideously ill for four days, which is typical as side-effects are cumulative, one afternoon I played the piano for a few minutes and out of nowhere my CRPS, mixed with chemo and my new friend, neuropathy, appeared without mercy in my wrists and hands. As of this writing, five weeks later, I’ve had little let up. While my idiot oncologist never took my CRPS seriously, I’m suffering at a level 9-10 pain and laboring to navigate a world built for people with hands.

So much for number 18, which broke my heart. I’m a goal-oriented gal, and desperately wanted closure for trauma release. At infusion centers, people get to know each other, who lives and who doesn’t, and it’s a big deal when a patient completes their chemo course. The nurses do a hip-hip-hurrah, ring a bell and everyone gets to say goodbye and good luck. I gave it my crazy-strong best, but as usual, CRPS made my decision.

And it would make my next.

Despite not getting the last infusion in, I hit a home run. No, a grand slam. Confirmed with follow-up imaging, I’d achieved a clinical “Complete Response” – the best I could do and hope for. Turns out I’m what they call a “super responder.”

Standard of care dictates that with triple-negative cancer, complete response or not, surgery is mandated (lumpectomy and lymph node removal) to confirm all microscopic malignancies are gone.

This knowing had been looming like a dark cloud since my diagnosis. CRPS and surgery don’t make good bedfellows, as the cutting and tissue extracting tends to fire up nerves that can spark a full-blown CRPS flare. My past has taught me my flares can last a month. Or a lifetime.  

Still deeply influenced by my doctor’s fear-mongering, I kept coming back to surgery despite its risks and my gut telling me to go another way. For once in my life, I wished I’d been well enough to do all the goddamn treatments without having to work around my never-ending pain. Bottom line, I wanted my best shot at living.

But live how? After surgery, would I be left with a life worth living?

The pulsating, burning pain in my hands and wrists provided this answer too. My body told me, unequivocally, that surgery would leave me with the mother-of-all pulsating burning pain. Body-wide and never ending. 

Traumatized that I couldn’t make this big decision, my life-partner, John, reminded me that CRPS has made all of my decisions for me. It didn’t allow me to have a child. I still can’t marry John after 40 years. And it eviscerated my career, one I still yearn for every day. I’m angry that my disease boxes me into corners and knee-caps me at every turn.

Even so, I left fear behind and went toward the light. John and I found three studies, including a meta-analysis, that support de-escalating treatment for triple-negative complete responders. While still early and controversial, these studies show that women who choose active surveillance in lieu of surgery post-chemo live just as long and well -- dare I say even better -- than those who go under the knife.

My integrative doctor, and even my surgeon, are strongly backing my decision – as does my pain doctor who wryly commented, “I don’t see any reason to poke the bear.” 

I’m damn certain that the decision I’ve made to forego surgery will be the standard of care in 15 to 20 years – and that I’m the future. I know deep inside that my CRPS, for all of its hell and fury, is pointing me into a smarter, wiser decision than the one fear would have driven me to. 

This “super responder” is in remission, and moving on…              

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. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

Top of Form

Can the Chronic Pain Community Unite Before It’s Too Late?

By Peter Pischke, Guest Columnist

What’s the quiet thing often left unsaid in the chronic pain community? An inconvenient truth that some patients and advocates would rather ignore?

Ed Coghlan touched on it when he closed his nearly decade-old blog, the National Pain Report, with a warning.

“In covering the chronic pain community, in addition to meeting hundreds of really interesting people, it is also evident how the community’s fractious nature holds it back,” Coghlan wrote. “Rivalries, which from where I sit look rather petty, prevent a unified voice for truly addressing solutions in fixing a broken health care system that simply does not work for the chronically ill.”

The truth is the pain community is too often the source of hate and weaponized toxicity. Not just against anti-opiate crusaders, but against each other. It’s a self-inflicted problem that may be the most significant handicap to putting together a united front to convince society to end opioid prohibition.

How bad is the problem? To find out, I interviewed over a dozen patients and leaders in the pain community. Included in this group are medical and academic professionals, civil rights activists and patient advocates. Most requested anonymity.

All agreed that there is an enormous problem of toxic behavior plaguing the movement, in which certain advocates target each other with vitriol and purity tests. The stories shared with me include death threats, stalking, harassment, theft, heckling at conferences and plagiarism.

This toxicity, unfortunately, doesn't stop with them. Mirroring the broader political culture online and following the examples set by strident advocates, some patients engage in rumor mills, back-biting and social media mobbing.

The backbiting does not go unnoticed. For some lawmakers and healthcare providers, the pain community is a by-word for crazies, especially online.

“They see the inner fighting, they see what's going on,” says pain patient and activist Jonelle Elgaway. “They also see that we're not united in any way. They ask me, ‘I see the cancer community, and none of that happens in it, does it?’”

Unintended Consequences

Sadly, some prominent advocates are willing to use the vilest attacks against their perceived enemies. They are often sent scattershot, aimed not only at anti-opioid organizations like Physicians for Responsible Opioid Prescribing (PROP), but people who lost loved ones to addiction and pain sufferers deemed insufficiently dedicated to the cause.

As one prominent physician told us, the vitriol creates unintended consequences that only reinforce the stigma that "patients are crazed addicts" – which hurts our ability to persuade leaders in government and medicine that pain patients need help.

Many of those we talked with have been victims of this hate firsthand. Some have staked their personal and professional reputations defending patients, sacrificing careers, relationships, finances and even their family’s well-being to fight for patient rights. One person sold their house so they could continue doing advocacy work. Another burned almost all of their professional relationships to stand up for patients.

Often working quietly behind the scenes, in places like Congress and the CDC, they are the community's most effective warriors. The recent gains we’ve seen, such as the American Medical Association finally taking a strong stand against the CDC opioid guideline, would not have happened without them. Yet, for their sacrifice, the community has rewarded them with bile.

The toxicity is so intimidating that few we spoke to were willing to go on the record. Many are more afraid of the pain community than they are of the news media or organizations like PROP.

The problem also affects our ability to get prominent people to support our cause. Elgaway points out that anytime a celebrity opens up about having chronic pain, unless they meet a purity test for opioids, they are attacked. For example, when actress Kristen Chenowith joined in a marketing campaign for Belbuca, she became an instant target on social media

“Everybody on Twitter kind of jumped on her. She’s famous and she could have been somebody that maybe could have helped us. And I understand you don't agree with her supporting this drug, but you can't jump on everybody that's trying to do something,” Elgaway said. “You know people are going to be afraid of us. They’re going to go back and tell people that chronic pain community is crazy.”

This circular firing squad reinforces negative stereotypes about pain patients, and pushes advocates and potential allies away. It also creates deep fractures in the community, making its most effective leaders too afraid or unwilling to collaborate. Too often, advocates are more concerned with marking turf and tearing each other up, instead of engaging with decisive action that might create real change. How can a coalition grow if every newcomer is pushed away?

This kind of behavior is foolhardy. Some advocates act as if they are the dominant force on the cusp of winning. But the reality is that despite millions of patients losing access to effective pain care, most Americans are still unaware of the pain crisis. What they do know is the story of the opioid crisis. And the media, government and many medical institutions are still invested in that narrative. 

Losing Focus

So why are patients and advocates doing this? I spoke to Dr. Terri Lewis to understand why the pain community can be so hostile, especially online. She told us the negativity reminds her of people “going through the stages of grief."

“It’s a group of folks who may not realize it, but they use social media to shout into the well and hear their voice echo back to them,” Lewis said.

Another factor Lewis points out is that there’s a fundamental cultural clash between pain patients and medicine. The world of medicine and research is slow, while patients want immediate solutions. When you watch doctors, researchers and regulators at a medical conference, the slowness of the process can seem like an infuriating betrayal. As a friend told me, “To them this is just academic, but to us this is our lives.” 

It is natural that pain patients feel angry at the world. They're often mistreated, denied medication and ostracized from society.

But just because we can understand why patients act badly doesn’t mean that behavior should be excused. Nor does it undo the substantial damage it does to the cause.

Dr. Forrest Tennant, a well-respected pain specialist who has sacrificed much for his patients, is concerned that some advocates have forgotten what’s most important.  

“It’s a group of folks who may not realize it, but they use social media to shout into the well and hear their voice echo back to them.”

— Terri Lewis, PhD

“I'd call for people to try to respect the other person's views. Do the Golden Rule: Do unto others what you'd have them do unto you. I know it sounds simplistic or awfully silly. This is a no-brainer to treat other people kindly,” Tennant said. “We are trying to help people with some very serious diseases that are going to end up with short lives, and we've lost focus on who we are trying to help." 

It isn’t easy to admit mistakes. Everyone makes them, including me.  What matters is that we learn from them and try not to let our egos get in the way. Community heroes like Dr. Red Lawhern encourage reflection and repentance.

“Remember, you can be amazed how much can get done if you don't care who takes the credit," says Lawhern. "Begin with an attitude of humility and the sense that it's not about you.”

Barby Ingle of the International Pain Foundation likens the pain community to a jigsaw puzzle. Every piece is different and sometimes its hard to find where they fit, but to complete the puzzle you need every piece.

“If you want to be the biggest help for yourself and other patients, do what you can do to help those you can help and know that there will be some who don’t want help or believe another way is best. It doesn’t make them not part of the pain community,” Ingle says. “Find or create your niche and work to make a difference, fulfil your goals, and be the best you can be. Be good to yourself and be good to others --even if you disagree.”

If the pain community really wants change, every patient and advocate must self-evaluate and adjust their behavior. We must stop aiming our guns at each other and learn to agree to disagree.

At the end of the day, whatever our disagreements, if we can improve pain care and get meds back for patients, nothing else should matter. We must stop being the community that people fear, and become an inclusive community that welcomes people to join our cause.

Peter Pischke is a freelance journalist and host of the Happy Warrior Podcast. Peter is also a disability activist and chronic pain patient living with intractable pain due to chronic pancreatitis.

This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

‘First, Do No Harm’ Doesn’t Mean ‘No Rx Opioids’

By Dr. Lynn Webster, PNN Columnist

Many physicians say their ethical duty is to "First, do no harm." This principle is often mentioned in the context of prescribing opioids. Some people even believe that prescribing opioids to treat people in pain violates the Hippocratic Oath, because, they say, a doctor’s first obligation is not to do anything that could make things worse for a patient.

However, that is a flawed oversimplification of the "First, do no harm" directive.

As N.S. Gill writes in Thoughtco, many people believe that “First, do no harm” is a quotation from the Hippocratic Oath. They are mistaken. More importantly, the creed does not say that doctors must never provide a clinical intervention that might trigger some degree of harm. If physicians had to live by such a code of ethics, they would be unable to offer almost any medical treatment, since they all carry some risk of harm.

As the Harvard Health Blog points out, ensuring that you always "do no harm" would mean no one would ever have lifesaving surgery. Doctors wouldn’t be able to order CT scans, MRIs, mammograms, biopsies or other tests that can turn up false positives; draw blood for fear of bruising or provide vaccines that may cause side effects. Even aspirin is a potentially dangerous treatment for some people. To avoid risk altogether, doctors would have to limit themselves to Band-aids and soothing words.

The Double Effect Philosophy 

“First, do no harm” isn’t about standing by helplessly while someone suffers needlessly. It is an ideal that is better explained by the principles embedded in the philosophy of the Double Effect. 

According to the Stanford Encyclopedia of Philosophy, the Double Effect doctrine means that an action is acceptable if harm occurs in the course of trying to make a positive difference. An intent to do good or help must be the underlying motive. However, the intention to do good by itself is insufficient. The possible good from the action must sufficiently outweigh the potential for harm. 

Often, the Double Effect guideline is used to explain why physicians prescribe opioids even knowing they can pose risk to patients. Doctors prescribe opioids -- sometimes at very high doses -- with the intent to relieve pain (which is “to do good”), because there are few other options available or affordable, and the risk of harm is manageable for most patients. 

This trade-off in decision-making is true for all medications and interventions, not just for opioids. Opioids are not evil agents, despite their checkered reputation among some laypeople, physicians and lawmakers. 

Not Using Opioids Can Causer Harm

Most patients nearing the end of their lives, their families and clinicians who treat terminally ill patients place a priority on a peaceful, pain-free death. Opioids are frequently necessary to fulfill that desire, despite their potential to hasten death. 

Providing opioids to ease end-of-life suffering passes the Double Effect test, but it is still controversial. Furthermore, end-of-life-care is only one area for which some experts question the use of opioids. Some people believe that opioids should never be prescribed because of the harm they may cause, regardless of their potential benefits to patients. 

But not using opioids can also cause harm. In an American Journal of Law and Medicine scholarly essay this month, Kate Nicholson and Deborah Hillman argue that there is a special duty to a subgroup of patients who are already receiving opioids: doctors must not harm them with forced tapering.  

There is also harm, Nicholson and Hillman say, in not treating pain in patients. Based on a Human Rights Watch study, they believe that doctors who deny patients the care they need "in an effort to protect their licenses or stay under the radar of law enforcement" may be violating their patients' human rights. 

Nicholson and Hillman point out that "First, do not harm" has a different meaning for policymakers than for physicians. Policymakers have a responsibility to ensure that society isn't harmed by opioids. However, the authors contend that policymakers have an even greater duty to "do no harm" by respecting the doctor/patient relationship when considering the societal impact of opioid prescribing.  

The patient's need for pain medication, they believe, should be prioritized over society's need for protection against the harm that misused or diverted opioids can cause. 

Our Ethical Responsibility to Patients 

As physicians, we are trained to heal. We become healthcare professionals because we want to provide compassionate care to the sick, the frail, and the dying. We swear an oath to use our best judgment to evaluate the risks and potential benefits in all interventions. Intending to do good, even knowing that adverse effects can occur with every intervention, is our ethical responsibility. 

A mischaracterization of the phrase “First, do no harm” must not prevent providers from caring for people, or prevent policymakers from allowing physicians to treat their patients. That treatment must include providing patients with medication that can adequately provide pain relief with acceptable risk.  

The physician's ethos must always be based on what is best for the patient when all factors are considered -- not on arbitrary guidelines that impose a one-size-fits-all philosophy.  

This column has been revised and updated from a version that appeared in the Salt Lake Tribune on December 10, 2017.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

How Public Health Failed to Stop Coronavirus Pandemic

By Roger Chriss, PNN Columnist

The pandemic is not going well in the United States, except possibly for the coronavirus. The U.S. is seeing record levels of new confirmed cases, and deaths are back up to almost 1,000 daily. Projections based on positivity rates and hospitalization levels suggest a long summer of illness and death, followed by even more in the autumn.

Several websites are using COVID-19 data to compile visual “dashboards” of what’s happening in states and counties around the nation.

Covid Act Now classifies most of the South as having an “active or imminent outbreak,” while the Covid Exit Strategy marks the entire South and much of the West as having “uncontrolled spread.”

Axios summarizes the nation’s response to COVID-19 with the headline “We blew it.”

“America spent the spring building a bridge to August, spending trillions and shutting down major parts of society. The expanse was to be a bent coronavirus curve, and the other side some semblance of normal, where kids would go to school and their parents to work,” wrote co-authors Dan Primack and Nicholas Johnson.

“The bottom line: We blew it, building a pier instead.”

COVID EXit STRATEGY

The bleak situation is clearly visible in county-level maps of the country. The Harvard Global Health Institute’s Covid dashboard marks almost all of Florida red. Most counties in the South are also red, and only a handful of counties around the nation are green.

The STAT News preparedness dashboard shows that many counties, particularly in the South and West, are completely unprepared to handle a surge of Covid-19 cases.

Despite all this, there is no nationally coordinated response. As Prevent Pandemics notes in a new report, the U.S. has no standards for collecting and reporting local or national data on COVID-19. As a result, the information is “inconsistent, incomplete and inaccessible in most locations.”

“Particularly in the absence of a clear national vision, strategy, leadership, or organization, it is crucial to establish standardized, timely, accurate, interlinked, comparable, and informative dashboards for every state and county in the US. This is required to improving our control of the virus and maximizing our chance to get our children to school in the fall, ourselves back to work, our economy restarted, and to prevent tens of thousands of deaths,” the report concludes.

The Trump administration has handed over management of Covid-19 to states, as if the virus confines itself within state borders or mutates when crossing them. The White House and some governors have even blamed the current surge on increased testing, though this is mathematically impossible, according to STAT News.

Cities and states are also competing against each other for scarce medical resources like N95 masks and drugs like remdesivir, and disagreeing about public health measures like face coverings and quarantining visitors from hard-hit areas.

Waiting for a Vaccine

The pandemic response in the US seems to be to soldier through until a vaccine becomes available. There is rapid progress with vaccine development, including promising results in Phase I trials from Moderna, Oxford-AstraZeneca, and CanSino. Phase III trials are getting underway, meaning that data should be available by year’s end. If all goes extremely well, large-scale deployment of one or more vaccines could be underway by summer, 2021.

But the coronavirus is well underway now. The Covid Tracking Project shows testing, cases and hospitalizations surging upward week after week, with deaths expected to follow.

The virus is spreading fast enough that the U.S. could reach herd immunity levels before widespread deployment of a vaccine. This means hundreds of millions of Americans exposed. Even if the rate of serious illness is only 5% and of death is 0.5%, that is still millions of people affected.

Johns Hopkins reports the U.S. has the third highest death rate in the world, behind only the United Kingdom and Chile.

The pandemic will keep going until we stop it. As journalist Debora Mackenzie notes in the book, Covid-19: The Pandemic That Never Should Have Happened: “Science didn’t actually fail us. The ability of governments to act on it, together, did.”

The U.S. has indeed failed and will continue to fail until it develops a coherent public health strategy.

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. 

Honoring Black Pioneers in Medicine

By Dr. Lynn Webster, PNN Columnist

There have been countless Black pioneers in the medical profession, but few of us know their names or the contributions they made. This column acknowledges the impact these men and women have had on healthcare, despite the inequalities they faced in pursuing their vocations.

DR. JAMES MCCUNE SMITH

In 1837, James McCune Smith graduated from the University of Glasgow in Scotland, becoming the first African American to earn a medical degree.

Dr. Smith had been denied access to an American medical school, so he was forced to seek his medical career overseas. According to the University of Glasgow website, Smith was a noted abolitionist, educator, scholar and "one of the foremost intellectuals in 19th century America of any race."

Besides graduating at the top of his class, Smith was also the first Black to run a pharmacy in the United States.

In 1847, David Jones Peck became the first African American student to graduate from a U.S. medical school, receiving his degree from Rush Medical College in Chicago. 

Rebecca Lee Crumpler was the first Black woman to receive a degree from a medical school in America. That was in 1863.

Alexander Augusta was the first Black to be commissioned as a medical officer in the Union army during the Civil War. He was the "surgeon in charge" (in other words, the director) of the Contraband Hospital in Washington, DC.

Biddy Mason was a former slave not formally trained in medicine, but she helped deliver hundreds of babies as a midwife in Los Angeles in the 1860’s. Mason was also an entrepreneur and philanthropist, who donated generously to charity and helped establish the first black church in the city.

In 1879, Mary Mahoney was the first Black woman to be awarded a nursing degree. She is also credited as one of the first women in Boston to vote after the 19th Amendment was ratified.

Daniel Williams was one of the first physicians of any color to perform a successful open-heart surgery. In 1893, he opened Provident Hospital in Chicago, the first interracial and Black-owned hospital.

BIDDY MASON

In 1895, Robert Boyd co-founded the National Medical Association. This is the oldest and largest organization representing Black physicians and healthcare professionals in the United States. Dr. Boyd served as its first president.

Vivien Thomas, the grandson of a slave, worked as a laboratory assistant rather than as a doctor. Yet, in the 1940s, he created a surgical technique to correct the congenital heart malformation that causes blue baby syndrome. His white associate, Dr. Alfred Blalock, received the credit.

Charles R. Drew established large-scale blood banks at the beginning of World War II and saved thousands of lives. He also created the first bloodmobiles. The Charles R. Drew University of Medicine in Los Angeles is named after him. Over 80 percent of its students are from communities of color.

William Hinton, who received his medical degree from Harvard in 1912, was the first Black physician to teach at Harvard Medical School. He developed the Hinton test to diagnose syphilis and wrote Syphilis and Its Treatment, the first medical textbook published by a Black physician.

DR. RICHARD PAYNE

The world of doctors who specialize in pain management is small, because it is a relatively new specialty. That means only a limited number of Black physicians have focused on treating patients with pain in the modern era. Richard Payne was among those pain specialists.

In 2006, Payne was Professor Emeritus of Medicine and Divinity at Duke University Divinity School and held the John B. Francis Chair at the Center for Practical Bioethics. An internationally recognized expert in palliative care, Payne devoted his career to making palliative care standard practice for people with late-stage illness. He was the first African American to become president of the American Pain Society.

In 2019, Patrice Harris became the first African-American woman to be elected president of the American Medical Association. Dr. Harris has been chair of the AMA’s Opioid Task Force since its inception in 2014.

You may have heard some of these names before; others, you may be hearing for the first time. In any case, these men and women saved the lives of thousands of Americans at a time when racial discrimination was a legal, acceptable part of U.S. culture.

Skin Color Still Matters

We may tell ourselves that skin color no longer matters. We may take for granted the fact that the Black pioneers in healthcare laid the foundation for people of all races to be able to make their own contributions to the medical world. But recent history does not support that perspective.

In 2017, a white woman walked into a clinic in Ontario, Canada and demanded that a white doctor be found to treat her sick son. She was escorted out of the building by security and, presumably, continued her search for that elusive white doctor. The "Karen" video of the incident went viral.

Just this month in STAT News, Dr. Ruth Shim explained that she is leaving organized psychiatry because of its structural racism. She wrote about experiencing "countless microaggressions" as a Black leader in the psychiatric community. She also expressed her belief that the American Psychiatric Association seems to have unwritten policies to deliberately "impede progress toward achieving racial equity."

In another STAT News article last January, Uché Blackstock wrote about why Black doctors are leaving their jobs as faculty members at academic medical centers. Blackstock felt compelled to resign from her job because she "could no longer stand the lack of mentorship, promotion denial, and work environments embedded in racism and sexism." It was a difficult decision for her to make, since there were few Black role models among the faculty. However, she found the workplace toxic, oppressive and racist.

"If academic medical centers and their leaders cannot adequately support Black students and promote Black faculty," Dr. Blackstock wrote, "then they will continue to leave."

We've come a long way since 1837, when James McCune Smith became the first African American doctor. Jim Crow laws have been abolished and schools — in theory, anyway — have been integrated. Recently, we’ve seen a huge wave of support for the Black Lives Matter movement.

Still, only 5 percent of physicians in the United States are Black, despite the fact that the population includes more than double that number of African Americans. That needs to change, but it is important to understand that parity representation in the medical profession alone would be insufficient. To honor the contributions of Black pioneers in medicine, we need to recognize their contributions to science and society, regardless of skin color.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

The High Cost of California's Death Certificate Project

By Dr. Denise Phan, Guest Columnist

Even as the Covid-19 pandemic occupies the nation’s attention, most of my work as a primary care doctor still revolves around other chronic diseases.  

Every day, people are still giving birth, still getting sick, still dying from terminal diseases, still getting hurt and still having pain. Yet more and more, physicians’ hands are tied when it comes to prescribing opiate medication to reduce their patients’ pain and suffering, especially now that surgeries, physical therapy and injections are discouraged due to social distancing guidelines.

Last year, a patient came to me with a letter from her previous doctor explaining that he is no longer able to prescribe any opiates. The local pain specialists he recommended in his letter were either not taking new patients on opiates or would not prescribe the dosage of oxycodone needed to control her pain.

Several months ago, another patient came in complaining that his pain specialist had cut his dosage down so quickly that he now resorts to street heroin to control the pain and withdrawal.

Yet another patient asked me a few months ago to stop the chemotherapy for his lung cancer and put him in hospice care so he can get adequate pain control.

And just last month, a patient told me she can no longer bear to attend her online fibromyalgia support group because five people in the group had killed themselves in the past few years.

Recently, a frustrated nurse in the oncology/orthopedic ward asked me, “What is it with you doctors? Are you all going to let people scream themselves to death from pain? "

DR. DENISE PHAN

A cardiologist friend of mine remarked, “Ten years ago you could get sued for not prescribing pain meds to patients, now you can get sued just for writing one."

Project Targets ‘Inappropriate’ Prescribing

One of the causes for this sad state of affairs in California is the state medical board’s “Death Certificate Project.” The board investigated the overdose deaths of 450 patients who may have received “inappropriate” opioid prescriptions and sent warning letters to their physicians. Disciplinary action was taken against dozens of them.

The Death Certificate Project sounds like a well-meaning idea, but in practice it has decimated the field of pain management and brought tremendous suffering to patients living with real legitimate pain.

The most egregious of the project's many faults is the decision to pull death certificates from 2012-2013, and then use the state’s prescription drug database to identify "overprescribers." The deaths occurred years before the medical board adopted tougher guidelines on the prescribing of opiates in 2015 and the CDC released its opioid guideline in 2016. 

By this irrational act, the project targeted hundreds of primary care doctors and pain management specialists who were caring for the high-risk populations of chronic pain patients, and were following previous California guidelines to treat pain aggressively and with opiate medications if necessary.  

To date, the board has filed accusations of negligent prescribing against 66 physicians. Forty-eight of them have faced discipline such as license surrender, public reprimands and probation. Some were forced into early retirement. Eighteen doctors are still awaiting hearings or trials. The vast majority of them are responsible physicians who have had no other complaints lodged against them. 

Throughout the Covid-19 pandemic, standards of care and public policies have been rapidly evolving, even flip-flopping from week to week, some causing and some preventing thousands of deaths along the way. It is incredibly irrational to retroactively penalize doctors for following the previous standards of care during a epidemic. Yet this is precisely what the Death Certificate Project is doing by focusing on overdoses in 2012-2013, when the opioid epidemic had not even been recognized or publicized by the medical board itself. 

Imagine going to work every day on the frontline of an epidemic, knowing that the state or federal government can change their policies at any time; and that they can go back and prosecute you for the deaths that resulted from their previous policies.  As we watched our colleagues in the field falling like dominoes one by one, can you blame the doctors for running scared?

The primary result of the Death Certificate Project has been the effective removal of dozens of frontline doctors amid a decades-long shortage of primary care physicians and on the eve of a pandemic. The secondary result of this program is the refusal of terrorized remaining physicians to prescribe any pain medications at all or to drastically reduced the dosages. This has caused a marked increase in pain, suffering and suicide rates in the legitimate pain and addiction patient populations, as well as the subsequent rise in the use of street opioids and thus opioid deaths overall.

The data on California and national overdose deaths shows that prescription opioid overdoses have declined since 2014. Overall drug deaths spiked up sharply in 2017-2018 – but this was mainly due to street heroin and illicit fentanyl. This shows how sadly unnecessary and harmful the project is.

Beside the human and societal costs listed above, this project is costing California millions of dollars annually in funding for administrative, consulting and legal fees. This is not counting the immeasurable cost to the medical system from the loss of physician resources during the biggest pandemic of our time. 

When a medication or treatment does not work as intended and causes many harmful side effects, we need to stop it. If you are a resident of California, please join me in a letter writing campaign to end this irrational, unnecessary, harmful and costly Death Certificate Project at the Action Network website

Dr. Denise Phan is an Internal Medicine physician in Los Angeles. She works in private practice in the San Fernando Valley and is on staff at Valley Presbyterian Hospital. Dr. Phan is active in the annual missions of the mobile health units of the Social Assistance Program for Vietnam and the International Humanitarian Mission. 

New Podcast Discusses Pain and Politics

By Dr. Lynn Webster, PNN Columnist

Not long ago, I was invited to support the Center For Effective Regulatory Policy & Safe Access (CERPSA). The nonprofit was recently founded by Stephen Ziegler, PhD.

CERPSA’s goal is to reduce the suffering that pain patients experience when their access to prescription medication is limited. I felt excited to join CERPSA’s Board of Directors and be a part of the activities the Center would undertake in pursuit of improving the lives of people with pain, including its “Pain Politics” podcast.  

There is probably no topic that has been more politicized and affects more people than pain. Producer and commentator Dr. Ziegler is a man with a mission. Each podcast episode tells stories about how politics informs -- or interferes with -- pain relief.

Dr. Ziegler defines politics as “who gets what, when and how.” Politics are often associated with government actors, but the term can more broadly include how a pharmacy chain implements policies on filling prescriptions, or how an insurance company imposes dose limits of medication for a patient following surgery.

Dr. Ziegler is an advocate for people in pain. A Purdue University professor emeritus, he has also worked as a lawyer, police officer, detective, DEA agent, and humorist. I don't know how he puts these experiences together, but I'm grateful that he is willing and able to leverage all of his skills and knowledge in a remarkable way to produce entertaining and informative podcasts.

There is a large potential audience for the podcast, because pain cuts across all demographics and does not discriminate. The general public will find the podcasts enlightening and timely. The politically charged topics Dr. Ziegler discusses with his guests relate either directly or indirectly to people in pain.

An example of someone who may be interested in Pain Politics would be a stay-at-home mom who suffers from chronic, long-term pain stemming from an automobile accident. She may feel isolated and be struggling with insurance companies and healthcare providers in an effort to find relief.

A veteran who faces stigma for the pain medication he needs to treat injuries received during a tour of duty would be another example, as would an out-of-work school bus driver whose health insurance has disappeared due to the pandemic.

The first Pain Politics episode -- Time for People in Pain to Make Noise -- is an overview of the podcast’s purpose, and how politics play an enormous role in shaping pain treatment, drug policy and human suffering.

In the second episode, Dr. Ziegler tells the Centers for Disease Control and Prevention to "get its head out of its app." This is a theme that will resonate with people who have been struggling with the CDC’s 2016 opioid guideline. Dr. Ziegler pulls no punches as he describes how the CDC has designed a data system that excludes the diagnosis of pain. He believes this, along with other frustrating CDC policies, was politically inspired.

Future episodes of Pain Politics will involve inequality and racism in pain, economics in medicine and pain, universal healthcare, how the DEA and other law enforcement agencies may overstep their roles in prosecuting doctors, the CDC's loss of ethical guardrails, national pain meetings that are politically-driven and not helpful to patients, and the American Medical Association’s recent letter to the CDC asking the agency to rewrite the opioid guideline. Dr. Ziegler will invite guests to appear on his podcasts as he covers these and other areas.

I hope you'll tune in via Apple Podcasts, Google Podcasts, or your favorite way to listen. You'll enjoy Dr. Ziegler's style, and benefit from the information he and his guests provide. I’m pleased to support his efforts.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

The CDC, Opioids and Cancer Pain

By Roger Chriss, PNN Columnist

In 2016, the Centers for Disease Control and Prevention issued its controversial opioid prescribing guideline. Insurers, states and other federal agencies soon followed with mandatory policies and regulations to reduce the use of opioid pain medication. All this was supposed to exclude cancer-related pain care, but in practice that’s not what happened.

Dr. Judith Paice, director of the Cancer Pain Program at Northwestern University’s Feinberg School of Medicine, told the National Cancer Institute in 2018 that the opioid crisis “has enhanced fear — fear of addiction in particular” among both patients and doctors.

“Many primary care doctors no longer prescribe opioids. Oncologists are still prescribing these medications, but in many cases they’re somewhat anxious about doing so. That has led some patients to have trouble even obtaining a prescription for pain medication,” Paice said.

In 2019, the Cancer Action Network said there has been “a significant increase in cancer patients and survivors being unable to access their opioid prescriptions.” One out of four said a pharmacy had refused to fill their opioid prescription and nearly a third reported their insurance refused to pay for their opioid medication.

That same year, CDC issued a long-awaited clarification noting the “misapplication” of the guideline to patients it was never intended for, including “patients with pain associated with cancer.”  

Long Term Use of Opioids Uncommon

Cancer pain management in the U.S. has been severely impacted by the CDC guideline, even though rates of long-term or “persistent” opioid use are relatively low and stable:

• A major review of over 100,000 military veterans who survived cancer found that only 8.3% were persistent opioid users. Less than 3% showed signs of opioid abuse or dependence.

• A study of older women with breast cancer who were prescribed opioids found that only 2.8% were persistent opioid users.  

• A study of 276 patients with head or neck cancer found that only 20 used opioids long-term – a rate of 7.2 percent.

• And a study of nearly 23,500 women with early-stage breast cancer who had a mastectomy or mastectomy found that 18% of them were using opioids 90 to 180 days after surgery, while 9% were still filling opioid prescriptions 181 to 365 days later.

While any sign of opioid abuse or addiction is concerning, these studies show that long-term use of opioid medication is relatively uncommon among cancer survivors. The American Cancer Society says opioids are “often a necessary part of a pain relief plan for cancer patients” and “can be safely prescribed and used” for cancer pain.

Cancer patients and their doctors have been successfully managing opioid risks long before the CDC guideline or associated state laws and regulations. Perhaps it is time for lawmakers, regulators, insurers and pharmacies to learn from the cancer community rather than getting in the way of clinical best practices.

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. 

A Painful Privilege: Your Right to Protest

By Mia Maysack, PNN Columnist

I used to think I maintained a pretty solid grasp on the concept of being hurt. But being confronted by prejudice and oppression has broadened my horizons regarding what else pain can and really does mean.  

Recently PNN published a column by Dr. Lynn Webster that highlighted an interesting point regarding pain sufferers and our experiences with prejudice in the healthcare system. Not that the Black Lives Matter movement is about us, but there is much we can learn from it. For example, how protesting in numbers gets the sort of attention that could actually drive real change.  

The fact is pain patients are often mistreated, but the discrimination minority patients face is deeper and far greater.  This isn't intended to lessen or take away from anyone's experience, but to keep things in proper perspective -- which we’re in need of now more than ever.

After attending a Headache on the Hill lobbying event in early February, I self-quarantined for months due to my health and in consideration for the health of others. But when George Floyd died, it was a last straw that drove me out despite the potential for consequences.  

It's understandable that not everyone is able to venture out in the ways that I have, and I'm grateful to have done this work to the extent that my ailments allow. But a simple fact remains at the bottom of any civil rights moverment:  there is always something that can be done. It is simply a matter of following through on doing it.  

Traveling to a place like Washington D.C. to lobby for better migraine care or even just to the state capitol in my own city for a BLM protest takes just about everything I've got out of me. I held my fists up for so long, I still cannot lift my arms. But the work has to be done by somebody.

So instead of complaining and contributing to the very stigma we attempt to escape, why don’t we show up and support each other in ways that we can?  

Being immunocompromised was mentioned at a recent protest I attended. Someone stood up to speak on behalf of another person who couldn't be there. I respected that. It was a way for that person's voice to still be heard regardless of the fact they weren't there to speak. It was a beautiful example of how we're still able to contribute meaningfully despite our limitations. 

The same is true for any cause. There are always options, such as donating to those you can trust your dollars with, contacting your elected representatives, making a call, sending a letter or signing a petition. At the very least, aim to recognize and release any privilege or ego.   

You don't need to have a different shade of skin to ask for justice.  At a recent protest, a black woman spoke so much wisdom. One of the things she said was, “Women are the most oppressed among us all.”

We need to recognize that when any of us is held back or down in any way, it impacts us all. When someone's life or rights are threatened, it's only a matter of time before the same thing could be done to you or someone you care about.  

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.

A Pained Life: The Language Barrier

By Carol Levy, PNN Columnist

Many years ago, I was in Brazil. I only spoke “pigeon” Portuguese. I walked into a diner, looked at a menu and saw something that looked good.

The counterman came over. I thought I said, “I would like the egg sandwich.” But I must have said something bizarre, because he walked away, twirling his finger by his ear and said, “Ella es loco.” She's crazy.

“No, no. Yo soy Americano,” I said. I am American.

Suddenly all eleven customers in the diner crowded around me asking, “Voce quiero que?” What do you want?

They figured it out and ordered for me. We continued to “talk” using hand signals and some of my “Portuguese.”

That memory reminds me of an episode of the TV show “Scrubs” in which a doctor asks his patient, “What level is your pain?”

The patient makes a face, mouth turned down, eyes almost crossed, forehead scrunched up. The doctor looks at a pain scale chart, the one that has faces going from “I’m okay” to “My pain is horrid.” The man's expression matches the face that shows he’s really hurting. “Ah. Your pain is severe,” the doctor says.

In both instances, the language gap is breached.

Things would be so much easier for us if this was how it worked between doctors and patients; having a communal experience in understanding our pain.

So many different pain scales are out there, all essentially the same: 0 = no pain and 10 = the worst pain imaginable.

I think adjectives express it better than numbers or faces, but using words like stabbing, aching, pulling and torture may actually harm us. “Torture” to me means horrendous pain, but to a doctor it may sound like exaggeration or hysteria. To me, “twinge” means painful, but to a doctor it may be pain that is not that bad and can be dismissed.

My recent brain implant made my pain much worse. I have never been good about talking about my pain. I rarely mention it, the level or how it feels. My doctors know what it is, they know from my history the effect it has had on my life. They know I am housebound for 80% of the time in an effort not to make the pain worse.

I called my neurosurgeon and used words he has never heard me speak, “I can’t take it anymore. It is almost unbearable. Please, take it out.”

Despite the pandemic and the ban on elective surgery, he scheduled the implant removal surgery within two weeks of our call. He understood me.

Probably no other doctor would have. My pain scale is not 0 to 10. Ten is the lightning, searing, knife-like pain I got from trigeminal neuralgia. Absent that, which thankfully I no longer have, nothing can or will ever reach 10.

My pain doesn’t slide. If I don’t use my eyes, which is what triggers my pain, I can be at 0. But once I start using them, I can go from 0 to 10 in the span of a few minutes. There is no ratcheting up little by little. If I don’t stop using my eyes, I will be in trouble. The pain will be out of control.

In my 42 years of living with this pain, at no time did a doctor ask me to explain how my pain works. They ask, “What kind of pain is it? How does it feel?” and so on, but never, “Can you let me know how you rate your pain so we will be talking the same language?”

How we communicate our levels of pain is often the decisive factor in the treatments and medications offered, dosages and the kind of opioid prescribed.

But if we don’t speak the same language, how can we understand each other? How can the proffered treatments or doses be what we need?

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.”

Playing With Fire: Should I Have Cancer Surgery?

By Cynthia Toussaint, PNN Columnist

As a woman with high impact pain for 38 years, I was stunned last July to receive a triple-negative breast cancer diagnosis. Seriously, God, how much more can I endure? I felt the tumor for a year before being checked because, with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities, I didn’t think cancer treatment was an option.

It took me half a year before plunging into the impossible – and I started chemotherapy in January. With triple-negative cancer (the worst prognosis), the only prospect of living includes chemo. If I was responsive to the drugs, I believed I had a shot -- if pain didn’t destroy me first.

I’d done my shopping and found an oncologist willing to follow my integrative doctor’s advice for the best outcome with fewest side-effects. That meant lower and slower dosing, no Neulasta (a wicked drug that keeps your immune cells robust at the cost of intense bone pain), infusion breaks, supplements to ward off neuropathy, and acupuncture before each infusion.

I was also diligent about my healthy, cancer-fighting life style choices – a plant-based diet, daily intensive exercise, regular mindfulness meditation, removal of toxic people and excellent sleep hygiene.   

It worked! My oncologist’s dream goal of 18 infusions is one away from being in the books (most people stop at twelve) and I can’t stop smiling as my follow-up imaging is crystal clear.

Despite every western oncologist chiding me along the way for doing my chemo “less effectively” with complementary integrative therapies, I’ve had a clinical complete response. This is the hope of everyone with triple-negative.

Conversely, the only person I’ve met with this rare sub-set of breast cancer relied solely on western medicine – and her cancer has already metastasized to her brain. 

Hardest Decision

CYNTHIA TOUSSAINT

Now my oncologists insist on doing a “minor” surgery to sample tissue from the “tumor bed” and previously effected lymph nodes. If the tissue confirms a pathological complete response, as everyone expects, I’ll have a 90% plus chance of survival for the next 5-10 years. If they find any leftover cancer cells that will embed and begin to grow, we’ll continue treatment.

I can feel those of you with CRPS grimacing. Yes, of course, I want to avoid surgery at all cost, but this is my life, and the hardest decision I’ve ever had to make.

My track record with CRPS and surgery stinks to high hell. As a young woman, I was given an unnecessary LEEP procedure for cervical dysplasia, which I’ve since learned usually fixes itself. As a result of that minor surgery and cauterization, my CRPS spread, and subsequently I was unable to have a baby – which is one of the great tragedies of my life.

When I was 40, I was diagnosed for the first time with breast cancer and told that without surgery, chemotherapy and radiation, I had just a few months to live. I was terrified, but didn’t trust western medicine anymore.

After researching my diagnosis, ductal carcinoma in situ (DCIS), and learning that these calcifications in the milk duct almost never become invasive, I chose to “watch and wait.” Even when my mom broke down, crying and begging, “Please, Cynthia, I just want them to take the cancer out of you!” -- I didn’t budge for fear of a CRPS blow up. The calcifications never grew and to this day I warn women about the over care of DCIS.

About a decade ago, a physical therapist wanted to try to straighten my CRPS-contracted right arm. The therapy seemed far too risky, and I only relented when she promised to work exclusively on my head, neck and back. But she cheated and yanked, breaking my right arm. I was at a level ten pain again. It took a year to get an x-ray and correct diagnosis because I was labeled a “catastrophizing” patient.

The orthopedic surgeon told me that without elbow surgery I’d never use my right arm again. In the end, I didn’t trust the medical professionals who broke my arm to “fix” it. Instead, I got into my beloved YMCA swimming pool, did mirror therapy and strengthening exercises in the surrounding area – and my arm slowly regained near-full function.

Fortunately, I’ve forever had the gut instinct to pass on multiple recommendations for spinal cord stimulators and intra-thecal pumps, knowing the surgeries would do far more harm than good.

So here I am again, having to decide on surgery or not. But this time the stakes are much higher.

With the exception of one surgeon I know who understands CRPS because he’s triggered it with breast surgeries, every western doctor is consistent. They’re horrified by the prospect of me not doing the standard of care surgery to confirm or rule out a complete response. When the surgeon heard my plight, he responded with, “Cynthia, this surgery could very well destroy your life.” Damn right.

In my research to glean wisdom for this impossible decision, I’ve come upon two recent, small studies. They support the protocol of post-chemo, minimally-invasive biopsy or “watch and wait” as an effective substitute for surgery to confirm a complete response. This may be the future for treating triple-negative cancer. But in 2020, taking this unproven route would leave me with the terrible anxiety of not knowing. Worse yet, I could suffer a quick recurrence.

What fire do I play with this go around? Do I potentially reignite my CRPS or my cancer embers? All I can do is go with my gut and heart, and call in the good karma chips from the universe I’m certainly owed.

Can anyone thread the CRPS-cancer needle? I guess I’m going to find out.                              

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has had Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”