My Story: Why Is Everyone So Quiet About Rx Opioid Shortages?

By Kimberly Smith

I am a chronic pain patient in Florida with multiple modalities of pain: chronic intractable pain, pain from a sports injury, and pain from an autoimmune disease. To further complicate my situation, I also have a list of allergies and genetic mutations that leave me unable to take aspirin, NSAIDs, gabapentin, codeine, and morphine for pain relief.  

I have a background in medicine, pain management and hospice, so I’ve always been mindful of the spectrum of things that can go awry with opioids. I keep myself on a stable dose with the goal of just “dialing down” the pain enough so that I can function, while not relieving it entirely.  

Fifteen years ago, when public attitudes started turning against opioids, I was switched to a fentanyl transdermal patch because it was “less likely to be abused.” I had hoped to avoid using fentanyl until my final days, knowing that once you’re on fentanyl for an extended period, it’s a nightmare if you have to switch to anything else and potentially deadly if you suddenly stop.  

Starting in September, I started having trouble getting fentanyl patches at the CVS pharmacy I’ve been using for 30 years. Instead of the Mylan fentanyl patch that I’ve been using for 15 years, CVS only had a fentanyl patch that used a completely different type of adhesive mixture -- one that I absorb inconsistently and too quickly.

I had two absolutely frightening episodes using that patch where I couldn’t catch my breath.  I don’t think anyone would blame me for never wanting to try that brand again (Alvogen).

Now I call random pharmacies each month, trying to find the Mylan patch. The supply itself is dwindling and here I am needing one of the only two fentanyl patches still on the market. It’s insane and I’m constantly stressed, anxious and overwhelmed.  

Today, I called the CVS pharmacy about my second opioid, oxycodone 30mg, and was told this is the latest opioid that is only coming in sporadically. I’ve been having to use the oxycodone as a replacement for the periods when the pharmacies couldn’t source the fentanyl patch, so I no longer have any type of emergency supply (nor do I have the opportunity to build one up).

For me, this is the absolute end of the road for opioids. I lack the CYP enzyme to metabolize morphine and I have an additional mutation that affects the efficacy of the metabolic processes, so I require higher doses than “normal.”  

I’m in a terrible, terrible situation and I’m by no means alone.  I’m starting to dream about it every night.  My doctors and the pharmacy team who have been caring for me for decades are stressed and concerned, and all have made tremendous efforts to help. But without access to the two medications I need, their hands are tied.

One of my pharmacists searched the entire state for my meds for 9 weeks and couldn’t find any. I still have many friends who are pharmacists, pharmacy techs, doctors, nurse practitioners and physician assistants, and they’ve been telling me awful stories about how much time they spend trying to resolve the opioid shortages -- not to mention the emotional toll caused by listening to patients cry and panic about being left to endure horrible pain and withdrawal.  

I don’t understand why everyone is staying quiet about this problem, especially when the shortages affect the entire hospice system, oncology patients at cancer centers, anesthesia and twilight sleep procedures, emergency medicine, trauma medicine, surgical procedures, acute pain and, of course, chronic pain.  

Doctors and pharmacists have been responding to the shortage by moving their patients to other meds, which is exactly the harm that I suffered when I was taken off the Mylan patch. This further squeezes the availability of the meds that are available and pushes those patients out to make room for the patients who were on something else.  Even gabapentin is unavailable at many pharmacies.  This situation is dire and getting worse.

If politicians were smart, they would support legitimate patients and the relief of chronic pain by making immediate changes to provide opioids to those who need them. All of the patients who are suffering would absolutely cast their votes for anyone who relieved their misery and gave them their lives back.

Instead, the politicians just assume that pain patients don’t vote and write us off. This is incredibly shortsighted. We do vote - when we aren’t struggling with pain and forced withdrawal.

I’ve reached the point where I am legitimately scared about my future. The shortages will just grow worse and worse, unless and until sweeping, radical changes are made.  Most of us wouldn’t last two to three months without opioid medication, and some wouldn’t be able to endure just one.  

While I see endless reports about Biden and Trump in the mainstream media, there’s not a word about the opioid shortage crisis and the direct harm being visited upon legitimate patients. Diversion rates are low, overdoses are primarily caused by illicit fentanyl (a completely different substance than Rx fentanyl) and desperate patients feel forced to turn to the streets.

Isn’t this a violation of the spirit of our Constitution?  It is certainly cruel and unusual punishment. We who follow the law and contribute to society are being cruelly punished for the bad behavior of others -- behavior which is basically a lapse of morals and mental health issues, which cannot be legislated away. We need to change the media narrative and shame the politicians and policy makers who created this mess.  

Do you have a “My Story” to share?

Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

Opioid Therapy Is Controversial, But Why?

By Barby Ingle, PNN Columnist

There are many factors that contribute to the controversy surrounding opioids, which have been used for thousands of years for pain relief.

Mainstream media often say that opioid medication is harmful and increase the risk of addiction, overdose and death. Many media outlets do not distinguish between FDA approved medications and street drugs, or show the life-giving side of opioid medication.

That is the root cause of the controversy. If people don't understand or are misinformed, they go with what they hear -- right or wrong.

Let’s explore these issues and, hopefully, set the record straight.

Rx Opioid Side Effects

All medications have side effects, including opioids. At least 50% of patients in clinical trials experience a side effect from opioid therapy, such as nausea, vomiting, constipation, dizziness, dry mouth or sedation. These side effects vary and can decrease or increase with long-term use.

Most side effects of opioids improve shortly after therapy begins or following a dose increase. However, itching and constipation can persist throughout treatment. Most of the chronic pain patients I have met on my journey are okay with these side effects and wish to continue with treatment. For others, opioid therapy is discontinued when the side effects are too severe.

A variety of respiratory issues can be caused by opioids, including inadequate breathing, erratic breathing, and impairment of the upper airways. That can lead to respiratory depression, a precursor to an overdose. Patients in acute pain management who are new to opioids are most at risk of respiratory depression because they have not developed tolerance to opioids.

To be clear, an overdose from prescription opioids is relatively rare. A recent study found the risk of a fatal overdose at 90 morphine milligram equivalents (MME) – a fairly high daily dose – is only 0.26%. The risk is even lower at 50 MME – just 0.16%.

Opioids have more respiratory effects during sleep. Several fatalities have been reported in patients with obstructive sleep apnea, who may be contraindicated to opioid therapy. Patients with sleep apnea who take other central respiratory depressants, such as benzodiazepines, should be cautious about this. If opioids are prescribed to patients with sleep apnea, a nocturnal respiratory assessment will be needed.

Patients may absorb more opioids from transdermal opioid formulations if they have a fever or other illnesses. This is also true if they are exposed to heat, such as a sauna.

Is Pain Inevitable?

The Japanese author Haruki Murakami once wrote, "Pain is inevitable. Suffering is optional." Murakami was writing about running a marathon, but it’s an apt description for someone with chronic pain. Does their suffering have to be inevitable?

I didn't understand that concept as a collegiate coach or as an athlete until I developed chronic intractable pain and needed treatment. It is difficult to understand chronic pain or intractable pain if you haven't lived with them.

So that we are all on the same page, chronic pain is defined as pain lasting over three months. Intractable pain is complex and can last a lifetime, causing immense suffering. Acute pain is pain that lasts for less than three months.

Acute pain is usually caused by an injury, trauma or medical condition. Left untreated, acute pain can progress to the chronic stage, causing long-term disability, depression, and impaired quality of life. Therefore, it is essential to identify and treat pain as soon as possible, preferably in the acute stage.

Different approaches, including medication, physical therapy, and lifestyle changes, can be used to manage pain. Finding the right approach for each patient is crucial, as something that worked for one patient may not work for another. It is essential to consider all options before selecting the most appropriate treatment.  

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and the founder and former President of the International Pain Foundation. You can follow Barby at www.barbyingle.com. 

Is the DEA a Domestic Terrorist Organization?

By Carol Levy, PNN Columnist

Terrorism is very much in the news these days, given the Israeli-Hamas war and all the fallout from it around the world. But terrorism can also hit close to home and in unexpected ways.

The FBI defines domestic terrorism this way:

“Violent, criminal acts committed by individuals and/or groups to further ideological goals stemming from domestic influences, such as those of a political, religious, social, racial, or environmental nature.”

It may not be domestic violence in the literal meaning of the term, but I would posit the U.S. Drug Enforcement Administration is a domestic terrorist organization.

Why would I believe that? The answer lies in how terrorists work. Their goals and methods are simple: kill one person and scare thousands. In the DEA's case, it means arrest a doctor and allege that they overprescribe opioids without a legitimate medical reason. This has a chilling effect on thousands of other physicians, who then limit or even refuse to prescribe opioids.

If a doctor knows his patients well and has been prescribing opioids safely to them for years, with beneficial results, makes no difference. The doctor is essentially arrested on ideological, social and political grounds, which gives validation to the concept that they are being terrorized.

The DEA’s war on drugs has gone far beyond its original goal of going after street drugs and drug dealers. It has escalated into a war against prescription opioids and the doctors who prescribe them, essentially making patients hostages to the DEA's political persecution.

I know there are instances when the arrests are legitimate, but from what I can tell many of the doctors caught in the DEA snare have been unfairly targeted.

I have never been a victim of their terrorism. I did lose one of the best doctors I ever had when he lost his privileges to write scripts for opioids. Although this was not due to the DEA but his own inappropriate actions, it allows me to better understand the effect that DEA terrorism has on so many of us.

My experience is nothing compared to the stories of patients who can no longer work, play with their kids, or even get out of bed because the opioids that allowed them to do these things were tapered or discontinued. Or they can’t get their opioid prescriptions filled at a pharmacy.

It’s nothing compared to all the stories of patients killing themselves because they can no longer get the medication that was helping them. Or the patients who were abandoned by a doctor who fears the DEA, who then struggle to find another doctor with the courage to risk going to jail by prescribing opioids.

To the DEA, the fact that these medications are working and that doctors are legitimately prescribing them is irrelevant. Fear seems to be their primary goal. Is that not terrorism?

Until the DEA and politicians get out of the exam room, I fear that pain patients will remain their hostages.

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. 

12 Holiday Gifts for People Living with Chronic Pain and Illness

By Pat Anson, PNN Editor

Should opioids and other controlled substances be deregulated? Are health insurers and regulators interfering with the practice of medicine? What kind of pain care did President Kennedy get? Will cannabis help you sleep better? And whatever happened to Patient Z?

The answers to these and other questions can be found in PNN’s annual holiday gift guide. If you live with chronic pain and illness or have a friend or family member who does, here are 12 books that would make great gifts over the holidays. Or you can always “gift” one to yourself. Click on the book cover to see price and ordering information.

Doctor Bison’s Fables: An Allegory of the American Pain Refugee Crisis

Dr. Mark Ibsen uses animals as lead characters in a series of fables to convey the crisis faced by many pain sufferers in the U.S. Doctor Bison and his patient (an otter) are joined in a crowded exam room by a menagerie of other animals representing insurers, hospitals, regulators and law enforcement. All want to have a say in what Dr. Bison prescribes to his sick patient — resulting in little actual treatment for the otter.

The Silver Bullet Solution: Is It Time to End the War on Drugs?

Author James Gierach is a former Illinois prosecutor who believes the War on Drugs is the “worst public policy in the history of mankind.” Drug prohibition helped fuel the overdose crisis, caused mass incarceration, eroded civil liberties, and made healthcare unaffordable. Gierach’s solution is to end the regulation of controlled substances and change public opinion about drugs, much like what happened with the legalization of cannabis.

Chronic Pain Reset

Psychologist Afton Hassett, PysD, has compiled a list of 30 simple activities that people in pain can do to improve their lives — from mindfulness walking and paced breathing to healthy sleep habits and random acts of kindness. Perform one activity each day (in 15 minutes or less) and select the ones you like to develop a personalized pain management plan that may lessen your pain, and give your life more joy and a better sense of purpose.

Z’s Odyssey

In his sequel to “Patient Z,” author Stefan Franzen updates the personal story of a loved one with intractable pain who was unable to find effective treatment due to the crackdown on prescription opioids. Patient Z eventually found relief by taking buprenorphine, a widely misunderstood opioid that, when used in its purest form, can be just as potent as morphine.

The Chronic Pain Couple

Author Karra Eloff knows firsthand what chronic pain can do to a relationship. Pain disrupted her romantic and social life, and held her back from personal joy and professional success. To save their marriage, Karra and her husband made simple changes to improve their intimacy and agreed not let illness sidetrack their relationship. If you live with pain or love someone with a chronic illness, this book could help save or restore your relationship.

Burden of Pain: A Physician's Journey through the Opioid Epidemic

Dr. Jay Joshi went to prison for prescribing opioids to an undercover DEA patient posing as a patient. Now a free man and practicing medicine again, Joshi wrote this book as a cautionary tale for both physicians and patients, explaining how he fell victim to DEA misconduct and public health policies that portray doctors as drug dealers.

The Strange Medical Saga of John F. Kennedy

Dr. Forest Tennant looks at the life-threatening medical problems faced by President John F. Kennedy — which the public knew little about until long after his death 60 years ago. Kennedy nearly died as an infant from scarlet fever, and as an adult suffered from adrenal failure, failed back surgeries and autoimmune problems. Tennant says JFK would never have become president without high-dose opioids and a controversial drug cocktail.

CRPS: Learning About the Different Aspects of a Painful Syndrome

This is the fourth volume of a book series by Eric Phillips on Complex Regional Pain Syndrome (CRPS), a complex neurological disease that affects millions of people. The causes and symptoms of CRPS vary from person to person, making its diagnosis and treatment more difficult. After four decades of living with CRPS, Phillips says the biggest problem remains a lack of understanding about the disease by medical professionals. 

Cannabis Lullaby: A Painsomniac’s Quest for a Good Night’s Sleep

Health journalist David Sharp struggled for years with chronic pain and poor sleep caused by “painsomnia.” Then he ate a brownie made with cannabis and slept like a baby. In this book, Sharp shares what he’s learned about cannabis, how to shop for it, what strains work best, how to find the right dose, and who should — or shouldn’t — use cannabis.

8 Steps to Conquer Chronic Pain: A Doctor’s Guide to Lifelong Relief

Dr. Andrea Furlan takes a holistic approach to treating chronic pain, recommending changes in lifestyle, diet, sleep and mindset. Instead of taking opioids and becoming dependent on them, she believes pain sufferers can learn how to “rewire” their brains by controlling their emotions, recharging their bodies and educating themselves about the nature of pain.

Not Weakness: Navigating the Culture of Chronic Pain

After 20 years of coping with Crohn’s disease and autoimmune conditions, author Francesca Grossman finally realized she wasn’t alone after speaking with other women who also suffer silently from chronic pain. In this memoir, Grossman shares what she learned about living and loving with chronic pain while managing work, motherhood, friendships, sexual intimacy and medical gaslighting.

Heal Your Disc, End Your Pain

Dr. Gregory Lutz believes degenerative disc disease can be treated without drugs or surgery through the use of regenerative medicine — using a specialized concentration of a patient’s own stem cells to help heal tears inside the disc. Unlike other treatments for chronic lower back pain, which only provide temporary relief, Lutz says stem cells give long-term results.

These and other books about living with chronic pain and illness can be found in PNN’s Suggested Reading section.  PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

The Trauma-Pain Connection Explored at For Grace’s Women In Pain Conference

By Cynthia Toussaint, PNN Columnist

Four years ago, I was wheeled into my pain management doctor’s office, not to talk about Complex Regional Pain Syndrome, but rather my newest and most dire diagnosis: Triple Negative Breast Cancer (TNBC). I knew I didn’t have a good chance at survival, but didn’t know why I had the most rare and aggressive form of the disease.

I asked Dr. Richeimer why this cancer would appear now, as my oncologist and genetic counselor were baffled. Without pause, he answered, “Cynthia, you’ve been trying to fix your dysfunctional family your entire life. The toll that’s taken on your body is why you have TNBC.”     

Thus began my trauma-informed journey.

I was already aware and intrigued that many researchers were identifying trauma as the main driver for chronic pain. Despite this, I passed on having trauma release treatment because I’d heard it could be triggering. But now that I was fighting for my very existence, I was all in.

In the midst of full-dose chemotherapy, no less, I took to reading and researching everything I could get my hands on about childhood trauma and how it leads to adult on-set chronic illness. On the trauma release front, I jumped into talk therapy and EMDR (Eye Movement Desensitization and Reprocessing), complimenting those treatments with big doses of music, writing, meditation, inner child work and ancestral healing.

I also started focusing my “For Grace” work on the trauma-pain connection. This included interviewing a boatload of experts and survivors as well as collecting and spotlighting lived experiences, all culminating in Friday’s 11th Annual Women In Pain Conference – “The Trauma-Pain Connection: A Path to Recovery and Growth.”

Radene Marie Cook

You see, I now understand that my 40+ years of pain and chronic illness are the result of serious and sustained trauma, suffered primarily during my early development. In short, trauma is not a piece of my chronic pain puzzle. It’s the whole puzzle.

I want to share all that I’ve learned with women in pain, during a day that I hope will launch your own trauma-informed journey, one that I promise will bring you healing and growth.

To start you on your way, our five-hour online seminar, beginning at 10am PT on November 17, will be broken into three sessions led by world-class speakers, panelists and breakout leaders, all who have survived trauma and volunteered their time.

• Session One will examine what trauma is, how it can be passed down generationally, and how it’s a driver for chronic pain.

• Session Two will highlight trauma release and the myriad of effective techniques, methods and strategies used to achieve that end, both practitioner-led and solo.

• Session Three will celebrate what I call the silver-lining of trauma, Post-Traumatic Growth, a process that paves the way for recovery, deeper meaning, new-found strength, and helping others.            

Themed throughout the conference will be the beauty, struggle and resilience of the Native American people. Because I’ve read time and again that this community suffers greatly from generational trauma, the day will be infused with stunning music and photography, compliments of one of our main speakers, Dr. Noshene Ranjbar, a leader of indigenous studies at the University of Arizona. It touched my heart that two of her students put in hours to gift us these sacred elements.

Perhaps the most poignant part of our event will be the extraordinary gift of intensely personal video vignettes sprinkled in from people who’ve traveled the dimly-lit trauma-pain tunnel, found healing through release, and moved on to the light of growth. The courage of these generous souls is a triumph of the spirit.      

This conference was For Grace’s heaviest lift to date. Coming from a chronic pain background, I didn’t know anyone in trauma and it took several years to build a critical mass of relationships. Also, because this conference is the first of its kind, our planning committee had to build it from whole cloth. Perhaps most difficult and most satisfying, was getting people to talk publicly about their deepest, darkest experiences. I know the challenge well because when I recorded my story, I was brought to tears more than once.

It was worth the sweat and tears because we struck gold.

This is the most important topic For Grace has covered. I’m certain that if you do the work, it will be a catalyst for healing and renewed wholeness. Remembering, facing and addressing our past traumas is our best hope to overcome the scourge of chronic pain.

Don’t wait to get a deadly disease to learn, to explore, to discover trauma’s place in your life. You’re braver than you think - and when you use that courage, you’ll be on the path to finding the last piece to your pain puzzle.

You can watch the conference for free at this link.

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

It’s Not Urgent and They Don’t Care

By Mia Maysack, PNN Columnist

There are no words to convey the extent that I, along with so many others, have endured medical trauma. It’s even more impossible for us to get those who haven't to understand what it's like or the toll that it takes.

A loved one of mine had an injury not too long ago that required a small dose of medical hoop jumping. Just the tip of the broken-healthcare-system-iceberg was enough to leave a lasting impression on them, to the extent they still haven't stopped complaining about it.

But when I attempted to express my own fresh experience with said iceberg, this same person described me as "too sensitive." That is dreadfully inaccurate, especially when you consider I've lived this way for over two decades and they had one adverse experience.

My aim is not to belittle or attempt competitive victimization. I understand how health problems impact us on different levels and in various ways. I simply find the lack of empathy -- yet the simultaneous expectation of it -- to be painfully fascinating.

Within the last few weeks, I've been hospitalized multiple times, essentially back-to-back for the same issue. That's part of what being chronically ill looks like. The difference between these recent visits, as opposed to all the others, is the spite I feel for providers who are supposed to be working for me.

I currently don’t have a primary care provider, so my only option when I have an urgent need is to go to a hospital emergency department. I was in one recently at two o’clock in the morning, freezing on a cot in an isolated exam room.

A nurse came in for the rundown as to why I was there, followed by a brief appearance from a doctor who didn't make eye contact or even face me. He kept his back turned while working on a computer.

The nurse proceeded to speak about me and my situation with Doctor Awesome, as if I was not even there. I interrupted their conversation, because I’ve already endured enough lack of bedside manner and respectfully expressed my concerns and wishes.  I asked for an exam and tests to ensure my medical issue wasn’t progressing, I also needed a prescription to relieve side effects from a medicine I was taking to manage my complications.

After laying all this out in a concise, professional manner, Dr. Awesome finally decides to turn around to face me and dryly asks, “So what brings you in tonight?”

Stunned, I politely responded that I’d previously been to this ER and was advised to return if needed. His reply was that my requests are more of a “clinic thing” and “weren’t necessary.” He then dismissed himself and I did not see him again for the hours I was left alone there. He did not come back to check on me before discharge or bother to report the results of my testing. No one did.

An assistant I hadn’t seen before eventually popped in and provided more warmth than anyone else I’d encountered, just by saying, “Awww, you do not look like you feel very well.” 

I thanked her for the acknowledgement and asked for an exam from anybody who was qualified -- it certainly didn’t need to be Dr. Awesome. She was appalled that I had to ask and left promptly to flag someone down.

So now another person I had never met and who didn’t bother introducing themselves, came in and spent less than a minute with me before they left.

At a different point in my journey, this sort of encounter would’ve completely shattered me, because of how low and how long I’ve been knocked down by those entrusted to aid in healing

Those days are over. Today, I’ll stop at nothing to pursue and obtain what’s in my best interests. Instead of feeling depleted after mistreatment like this, I internalize it as empowerment. I’ve made the decision to give up on them instead of myself, and to continue battling for the sake of my life quality. Even if that means fighting against the harm that they vowed not to inflict in the first place. 

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

My Pain Marriage

By Mara Baer

Two years ago this month, I had major surgery to try to address the daily chronic pain that had been with me for seven years. Leading up to that surgery, I was bounced around from specialist to specialist, experiencing many failed attempts to treat my Thoracic Outlet Syndrome, a rare nerve entrapment condition that causes overwhelming nerve pain.

Because the surgery was unsuccessful, the looming anniversary date -- November 30th -- carries a lot of weight as I approach year 10 of my chronic pain journey.

Anniversaries are times of reflection, when we think about where we’ve been and where we are going, celebrate milestones, and commemorate paths taken. We acknowledge wedding anniversaries, work anniversaries, birthdays, deaths, and other important junctures in life.

There are also health recovery anniversaries celebrated by cancer survivors to honor their remissions and recovering addicts who mark their hard-earned sobriety. The anniversary of my surgery brings the same type of evaluation and introspection.

My husband Art and I commonly celebrate our wedding anniversary in a simple way with a nice dinner and a toast.

We just hit 17 years together and noted how much we’ve accomplished; bringing two beautiful kids into the world, making a big move from DC to Denver, and building our own little, special world.

We also reflected on the impact my chronic pain has had on our lives. I shared with him how I feel that I am in a relationship with my pain that is akin to a marriage -- often complex, at times emotional, and deeply reliant on compromise and understanding.

This relationship can feel like a third wheel in our marriage some days, taking over and getting in the way. This is something we both are working to address.    

Mara Baer and Art Maples

And, like a toxic relationship, the “pain marriage” can be all consuming. Chronic pain sufferers commonly report feeling a lack of control and that pain dominates daily life. I’m sure many readers can recall a personal relationship that felt this way.  Just remember that one bad relationship and how it made you feel when tensions were high. Angry. Frustrated. Sad. Helpless. Fearful. Depleted. This is how the pain relationship can feel for most chronic pain sufferers.

Most people in a challenging relationship will say that toxicity feeds greater toxicity, creating a vicious cycle. The pain marriage is no different. When I have been at my lowest due to pain, I found it impossible to have a positive outlook. I tried every ineffective playbook strategy, including disengaging or ignoring it (“pain, you are not there, you just aren’t there”); placating it (not moving, lying in bed, other unhealthy habits); and bargaining (“pain, I’ll do all the right things so you will just leave me”).

I am sure there are others. These strategies never seemed to work. Why? Because like in any relationship, masking or hiding from the raw truth will not be successful.  

All couples argue, and Art and I have had our share. I’ve learned that our greatest challenges come when we are not listening to each other. The words come out, but perhaps my interpretation of his words or his of mine are not the same as what we intended.

When we don’t hear each other, arguments can escalate quickly. It’s the same with pain. When I sense my pain and try to ignore it, I may not be really hearing what my body is telling me.

But when I acknowledge pain’s role in my life and how I feel about it, I can start to gain equal footing or control. Then it’s not about “winning” (like winning an argument), but about managing the dynamics between us.

It might sound odd that I’m referring to my pain in this way. But only when I started to accept pain’s presence could I start to change the nature of the relationship. This is why acknowledging that I am in a relationship with my pain is one of my chronic pain truths.

So as my surgery anniversary nears, I may not be toasting the journey, but I will be reflecting on the ups and downs of my pain struggle, and also celebrating my new outlook and path. I know I’ve got more work to do, and I’ll admit that I am still learning. But when it comes to my pain relationship and my marriage to my spouse, both are worth the effort.

Mara Baer is a writer and health policy consultant offering services through her women-owned small business, AgoHealth. Mara is a member of the Science and Policy Advisory Council for the National Pain Advocacy Center and recently launched a chronic pain newsletter called Chronic Pain Chats.

Why the Ruan Case Won’t Protect Doctors From Prosecution

By Dr. Joseph Parker

Doctors trying to save lives and help pain patients are regularly being sent to prison for prescribing opioids. And despite last year’s Supreme Court ruling in the Ruan case, that’s not changing.  Here’s why. 

First, it’s important to know what you are up against.  When the US federal government goes after a doctor or anyone else, they face a streamlined conviction machine.  Since the time of Ronald Reagan (who I voted for), the rights of an American citizen to challenge the charges against them or try to overturn an unjust conviction have been eroded. 

Then came President Bill Clinton (I voted for him too), who signed into law the Antiterrorism and Effective Death Penalty Act, doing more to ensure that the government can imprison the innocent than any other president since the Civil War.

At the founding of this nation, it was recognized that governments are prone to lock up people they don’t like, finding some legal pretext to justify their actions.  To guard against this, the Constitution and Bill of Rights were adopted to limit the powers of the federal government. 

Originally, there was only one federal crime: an act of treason. This crime was much more limited than the British version had been, when wandering over onto the King’s hunting grounds was considered treason. In the American version, you had to wage war against the United States or give aid and comfort to its enemies during a time of war. 

Then John Adams, the second president of the United States, made sedition a federal crime. Since then, so many federal laws have been added that government itself cannot tell you exactly how many or what they are.

That’s not counting all of the rules and regulations enforced by federal law enforcement, as if they were the law.  Locked up is locked up, after all.  Today the land of the free incarcerates more of its citizens than any other nation.  Not only that, but the sentences have become draconian. 

There is no nation on earth today where the liberty of a citizen has less value than in America.  The US incarcerates an average of 629 people for every 100,000 citizens. The next closest nations are Rwanda, Turkmenistan, El Salvador and Cuba. China and Russia don’t even make the Top 10.

Believe it or not, there are 37 states in the US that beat Cuba’s incarceration rate of 510 prisoners, with Louisiana coming in at a mind numbing 1,341. 

All of those inmates did not end up in prison by accident.  Looking at 2020 numbers, there were about 1,879 criminal cases heard in federal court.  Of those, about 90% of the accused plead guilty without even going to trial. Is that because the US government is absolutely right 90% of the time?  I am cautiously skeptical. Only 0.04% of cases -- 4 out of 1,000 – resulted in acquittal.  Those are not good odds. 

In Ruan v. United States, Dr. Xiulu Ruan appealed his conviction for prescribing opioids in an “unauthorized manner.” In a stunning unanimous verdict, the Supreme Court justices repeated what they said in 1925 in Linder v. United States, and then again in 2006 in Gonzales v. Oregon:  the federal government cannot dictate the practice of medicine and a doctor can only be prosecuted if they knew what they were doing was wrong.

As has happened in the past, US law enforcement doesn’t let something like a Supreme Court ruling slow them down.  They are completely ignoring the Ruan ruling by arguing something called “willful blindness.” What was the doctor willfully blind to?  To whatever opinion the government’s expert witness feels like arguing is the “usual practice of medicine” and “a legitimate medical purpose.”

Even though the Supreme Court made clear that only individual states can regulate the practice of medicine, the government’s hired expert does not have to come from your state or even be familiar with your state’s laws regarding the practice of medicine.

In effect, the DEA argues that there is a national practice of medicine that must be followed.  Where do they draw these medical practice standards when there is no such thing as a federal medical license?  From medical textbooks like the "Principles and Practices of Pain Medicine"?  No.  From the teachings of national medical organizations like the American Academy of Pain Medicine or the American Society of Addiction Medicine?  No again. 

The teachings from those sources are not allowed in court, unless you can get one of the original authors to come testify for you.  And sometimes, not even then.  The chapter on avoiding addiction in pain management from the above textbook was written by Dr. Alan Wartenberg.  Despite his advanced years, Dr. Wartenberg came to my trial to testify for me.  But he was not allowed to be considered as an expert in pain medicine, because he was “only” an addiction specialist. 

This is nothing compared to what happened to Dr. William Bauer of Ohio.  A dozen pharmacists, doctors, and scientists were willing to testify on his behalf, and all of them were disqualified by the court.  But the government’s “experts” in pain medicine can testify about almost anything, including addiction and even chronic cough.

The government does not convict you by proving you are guilty, they convict you by smearing you publicly long before you get to trial, and then making sure that the jury does not have access to the truth, by disqualifying experts, withholding favorable evidence, allowing false testimony, and making false statements to the jury. 

And remember, Dr. Ruan “won” at the Supreme Court. But he’s still in prison. 

Good luck and be prepared.  Ruan will not save you.

Joseph Parker, MD, is Chief Science Officer and Operations Officer at Advanced Research Concepts, a company developing solutions to the challenges of space travel and space-related medical issues.  In clinical practice, Dr. Parker specialized in emergency medicine and served as Director of Emergency Medicine at two hospitals. Prior to that, he had a distinguished career in the U.S. Marines and Air Force. 

In 2022, a federal jury convicted Dr. Parker on two counts of unlawful opioid prescribing. He has filed an appeal as he awaits sentencing.

A Pain Patient's Perspective on Opioid Prescribing

By Barby Ingle, PNN Columnist

It is essential to prescribe pain treatments that are appropriate and effective for each patient. I say that based on my own experiences as a patient, as well as thousands of others I have spoken with over the years as a friend and advocate.

Patients who need opioids, benzodiazepines, antidepressants and other medications should have access to them -- just as a heart patient has access to medication that keeps their heart functioning or a diabetic needs access to insulin.

People living with pain should also be offered individualized treatment. That could be anything from physical therapy and analgesics to surgical procedures and alternative therapies like acupuncture. I have tried over 100 different types of pain treatment; some have worked and others have not. It often made me feel like a guinea pig. Unnecessary surgery hurt me most in the end.

There are many public education campaigns underway to prevent addiction and overdoses by reducing the use of prescription opioids. These campaigns are repeated in the media, but the information does not always include facts or is presented in a misleading way.

For example, there is the DEA’s “One Pill Can Kill” campaign, which is aimed at raising awareness about a surge in counterfeit pills made with illicit fentanyl and other street drugs. Another is the CDC’s “Rx Awareness” campaign, which shares the stories of people whose lives were impacted by prescription opioids. The overall theme is that opioids are “addictive and dangerous.”  

Although well-intentioned, these campaigns have a tendency to demonize FDA-approved medications that have a lot of science and research behind them. Most people are unaware that fentanyl has been used safely and effectively for decades to treat severe pain and as an analgesic in millions of surgeries. Saying “one pill can kill” to a pain patient who has improved their life with a legally prescribed medication is disheartening.

I have seen this misinformation firsthand over the years and how it has put a damper on opioid prescribing. Physicians should prescribe opioids for pain when appropriate, but many are afraid to do so because of potential sanctions and legal threats. As a result, many providers won’t prescribe opioids or will only do so minimally and as a last resort.

Individualized Treatment

I believe each patient is different and should be treated as such. We need providers to operate on the assumption that each individual is unique and requires something different, even when they have the same disease or injury as someone else.

Physicians today can use pharmacogenomics to see if a patient’s DNA can affect how they respond to a treatment or what is chemically right for them. The dosage, brand, procedure and frequency will vary depending on each patient. I often bring my pharmacogenomics information to communicate more effectively with my providers, which benefits us both.

I also know that doing what is least invasive first and then progressing to other options is essential. Sometimes, surgery is the best option. Sometimes, opioids or other pain medications should be used first. Every medical provider should work at finding the treatment that most effectively suits the patient.

It is a considered best practice to prescribe opioids to someone in severe pain from sickle cell disease. Yet, when many sickle cell patients go to the ER or are admitted to a hospital, they are denied opioids because of hospital policy. What is the point of having a trained medical providers on staff if you won’t let them treat a patient the way they should be?

Denying pain relief is not only cruel, it can be the worst practice for everyone involved. For example, a man in severe chronic pain committed suicide after a doctor at a Kentucky pain clinic cut his opioid dose in half. The man’s family filed a lawsuit and won a $7 million judgement against the doctor and clinic.  

Ultimately, it should be the patient's responsibility to weigh the risks and benefits of any treatment, after getting input from their provider and conducting due diligence. Unfortunately, there are many obstacles standing in the way of that. One of the biggest is finding a doctor willing to prescribe pain medication. In addition, there are insurance restrictions, the cost of medication, and other logistical issues such as transportation to appointments.

Here in Arizona, patients must see their provider every month to renew a prescription for a controlled substance. Policies like that were put in place to “protect” pain patients, but only added extra costs, burdens and stigmas to them.

Patient-Physician Communication

How can we change the narrative about opioid prescribing? We can start by emphasizing the importance of effective communication between physicians and patients, even those as young as elementary school. Early education on how to talk to medical professionals and advocate for yourself is vital. I see this as one of the most critical things for patients to do.

Communication and trust are essential. Patients need to know when to take medication, how much to take, and what the potential side effects are. They also need to be able to express how the medication is working and what their symptoms are. Patients should feel comfortable asking questions and discussing their pain management plan. Physicians need to listen, provide feedback and give advice when needed.

Individualized treatment plans should be tailored to the patient’s age, gender, medical history, lifestyle and other factors.  That will help ensure that the treatment is effective and also reduce the risk of adverse reactions and potential complications. Collaborative decision-making makes patients feel more comfortable, confident in their treatment plan, and more likely to follow it.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and the founder and former President of the International Pain Foundation. You can follow Barby at www.barbyingle.com. 

Let’s End the Silence About Endometriosis

By Dr. Kristina Brown, Adler University

Endometriosis causes physical, sexual and emotional pain. About 190 million people around the globe have endometriosis, including one in 10 American women, but there has historically been a deafening silence about the disease and the pervasive impact it can have on a person’s life.

While endometriosis is a chronic gynecological illness that can affect anyone with a uterus – women, transgender men and nonbinary individuals – it often goes undiagnosed because its symptoms can be attributed to other physical or psychological concerns. Patients presenting with this pain are often told it is “all in your head.”

However, endometriosis is becoming a more visible illness, thanks in part to celebrities such as Lena Dunham, Chrissy Teigen, Amy Schumer, Whoopi Goldberg and others who have begun sharing their stories publicly.

After going undiagnosed for 23 years, Padma Lakshmi, a popular cookbook author, actress and host of the TV show “Top Chef,” founded EndoFund, previously Endometriosis Foundation of America, in 2009 so that others do not have to go through what she did.

I am a couple and family therapy professor, clinician and researcher. My own endometriosis diagnosis at the age of 19 has inspired my work exploring how this illness affects others beyond the physical symptoms.

To better understand the impact of endometriosis on relationships, I interviewed 10 couples about their experiences of diagnosis, treatment and living with this disease. Through their stories of how endometriosis-related pain can affect every aspect of daily life, including their intimate relationships, I provide some specific recommendations. The quotes I have included in this article are from my doctoral dissertation research.

Basics of Endometriosis

When a person has endometriosis, the endometrial cells that line their uterus “implant” in places outside the uterus, such as the ovaries, fallopian tubes and the lining of the abdomen — called the peritoneum. At the end of each menstrual cycle, the uterus sheds its lining, which exits the body via the cervix and vagina. The “misplanted” endometrial cells also shed, but they have no place to go – resulting in internal bleeding, inflammation and pain.

An endometriosis diagnosis is described in stages related to the visual presence of the disease, from minimal, or Stage 1, to severe, or Stage 4. However, there is no connection between the stage and the experience of pain.

One symptom of endometriosis is intense pain during the menstrual cycle. Another is pain with sex. Because pain with menses or sex can be attributed to “normal” pain, a history of sexual abuse or psychiatric reasons such as a dislike of sex, some people with endometriosis wait an average of seven years for diagnosis, which can be visually confirmed only through a procedure called laparoscopy.

In addition to these and other types of severe pain, endometriosis can also cause infertility, and patients who want to have children must often undergo medical or surgical interventions to conceive.

Impact on School, Work and Sex

Physical pain from endometriosis can be debilitating. Adolescents with endometriosis may struggle to keep up with their classes, friends, homework or extracurricular activities when the pain becomes too severe. They may shift to home-schooling or virtual learning to complete their studies.

The pain can also deeply affect a career trajectory. “I almost lost my job because of time off,” one interviewee told me. “In fact, when I had to get my hysterectomy, I walked in to tell my manager and he goes, ‘Well, I hope you’re not going to tell me that you have to have a hysterectomy and have to be out for six weeks!’ And I just broke down in tears.”

All of my participants shared experiences where doctors dismissed complaints of sexual pain – called dyspareunia – from endometriosis. This can delay diagnosis and treatment.

Sex and intimacy often become nonexistent, while some couples shared that they have come to accept that pain is part of sex. One woman shared with me: “I don’t want to be touched or have my naked body seen because I feel bloated and ugly and I’m in horrible pain!”

Partners can also be affected emotionally. “I just feel horrible,” one told me. “There are times when we are having sex that I actually feel guilty that I know that I am hurting her and I know she is going to be in pain and it makes me unhappy.”

These experiences of pain, of not being believed by doctors and professionals, of negative effects on education and career and of intimacy destroyed create a heavy emotional burden on individuals and relationships.

Breaking the Silence

When I was diagnosed with endometriosis, it changed the course of my life. My partner and I learned to expand our definition of intimacy and to redistribute household responsibilities when I was incapacitated. As the risk of infertility only increases without intervention, we started conversations about having children earlier than anticipated. My diagnosis also led me to focus my professional identity as a medical family therapist to help others deal with endometriosis and chronic illnesses.

Based on this experience, here are some ways to break this silence:

• Learn about endometriosis. It directly helps when one’s support systems are educated.

• Separate the person from the disease. When the pain you are experiencing from endometriosis is debilitating, help those around you who are also affected to understand that it is because of your endometriosis and it is not personal.

• Speak from your own experience, saying, “I …” rather than “You …” When we do this, it decreases the other person’s defenses and opens up the communication, making space for connection.

My research participants shared their own recommendations with me, especially the importance of believing that their pain is real; accept that what they are sharing is their very real experience, and let them know that they are believed.

Bestselling author and social work researcher Brené Brown has said, “Empathy fuels connection, sympathy drives disconnection.” Approaching someone with endometriosis from a position of empathy sends a message that you want to work with them collaboratively.

By practicing these important relationship skills, we can break the silence around endometriosis.

Kristina S. Brown, PhD, is a Marriage and Family Therapist, and Professor and Chair of Couple and Family Therapy at Adler University in Chicago. Dr. Brown is the Editor-in-Chief of the Journal of Feminist Family Therapy and also serves as the Director of Mental Health for Floating Doctors.

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

Is Your Doctor a Good Listener?

By Carol Levy, PNN Columnist

Many of us have had doctors that we loved. They not only listened, but actually heard us. They gave us their time, attention, and cared -- not only about us, but doing the best they could for us.

They truly follow the intent of the Hippocratic Oath: primum non nocere, or “first, do no harm.”

Then there are the doctors who don't care, and don't even seem to care that we know they don't care. They are quick with us. They don't listen or hear. They have their theories. The facts that we give them about how the pain feels, where it is, etc. make no difference.

I went to a new neurologist. She was very nice, but ignored my pain from trigeminal neuralgia and my long history of surgeries and medications. She decided my issue was “anxiety,” which I never said I had.

She repeatedly asked, “Is your problem anxiety?” I shook my head “no” to answer the question and to show my frustration with her for asking it.

Nevertheless, at the end of the appointment, she asked, “Do you want me to prescribe something for your anxiety?”

Primum non nocere? No. She didn't do harm, but she sure as heck didn't help.

Dr. Norton, my neuro-ophthalmologist, didn't seem to care either, at first. He gave me short shrift by rudely saying, “Stop being so schizophrenic in how you're telling me about your pain.”

Because I was so afraid and worried, I gave him the details in scattershot form, instead of chronological and neatly. After two appointments, he finally understood my pain was real. Suddenly, he cared! The change in him was almost palpable. His words were supportive. He worked to give me hope.

When I first went to the hospital for a pain flare, I was overwhelmed by it. It was spontaneous and constant.  My only hope was that Dr. Norton could stop it.

“Is this ever going to go away?” I asked, my voice tremulous with pain and worry.

“Let me worry about that,” he said. “That's my job.”

His words were a verbal hug. Primum non nocere. He cared about me and would make sure I suffered no further harm. I felt like I was being helped.

Dr. Norton was the face of the caring doctor, the one who follows the oath, who puts his patient first. And that makes all the difference.

As for the doctor who wanted me to say I had anxiety, I canceled my next appointment with her. She was the second neurologist I had seen.  The first was also entrenched in his theories and didn't care about me or the facts.

I was concerned about consulting with a third doctor, fearful I would be accused of "doctor shopping.” I asked my nurse practitioner, “Do you think seeing another neurologist will be an issue?" She shook her head no.

"You have valid reasons for not wanting to stay with them. You need to find someone who will listen to you and deal with the pain," she told me.

And she was right.  I needed another doctor, a doctor like Dr. Norton, (who moved out of state). I need a doctor who works with me, not against me.  Who truly practices primum non nocere.

And that should be the goal for all of us.

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. 

Why Living for Others Keeps Me Going

By Mia Maysack, PNN Columnist

While I am “the strong one” that so many look up to and confide in about their hardships and struggles, there aren't many people that I can reach out to in hopes of receiving the same sort of consideration, counsel or support.

I once expressed to a certified professional that one of the main reasons I'm still in existence is for the sake of other people. They looked at me – perplexed -- and proceeded to explain how that was an “unhealthy” approach to life. My reaction was to smirk, because there was obviously no way in hell this individual could begin relating to, let alone understand, what I was saying.

The vast majority of my experiences with therapy have been that the provider and I may as well have been speaking different languages.

Repeatedly, I'm confronted by individuals who say things such as:

“It's my kids who keep me going!”

“I do it all for them! They are my reason for living! I didn't know love or the point of life until I had children!”

I honor all of that to the best of my ability, but also wonder. What’s the difference between that mindset and the point that I made with the therapist?  There isn't one -- other than the fact my motivation doesn't come from having children, but rather from the brokenness of our world as a whole.

What do I mean when I say I live for the sake of others?  It's that I'm equipped with such a deep sense of compassionate empathy that I am able to hold the edges for people who ordinarily do not feel heard or seen. This somehow cultivates the illusion that I'm superhuman, and don’t need to be seen or heard myself.

Just because some of us don't outwardly complain or vent doesn't mean we have it all together, that everything is easy, or that we ourselves aren't drowning in a sea of despair.

Most people wouldn't know how to handle it, if I shared with them the reality of what my life is truly like. They wouldn't know how to respond if I told them that just getting out of bed for me is like running a marathon. Or if I described the pain and torment in my physical body, which keeps me away from things that I want to do and bring me a sense of meaning, joy and purpose.

They certainly don't know how to handle it when the person they depend on reveals that they're beginning to crumble under the weight life has forced them to carry. Anytime that I've attempted to confide in someone, there are three things that occur:

1. They aren't listening to actually hear you, but are simply awaiting their turn to speak -- which usually involves some sort of comparison between your situations, with a hinted suggestion that their situation is far worse than yours.

2. You make them uncomfortable by expressing yourself authentically. They don't know what to do or say, which often translates into doing or saying not much of anything.

3. It causes them major concern and worry, to the point that I then have to reassure the people I sought comfort from that I’m okay.

It has become easier to remain silent. That is why we suffer. That is what’s killing us.

I have zero questions in my mind as to why someone makes the decision to die. That doesn’t mean condoning or promoting it. I simply comprehend the endless reasons why life can be so tiring and how a lifetime of exhaustion can get old -- to the point where someone no longer wishes to go onward.

I believe in everyone's ability to choose and proceed with what's best or right for them, whether I agree or understand it. I've lost countless loved ones and that has been sufficient reason for me not to check out. I can't do it because so-and-so did. I want to carry on so they continue to live through me.

Although I still feel that way most of the time, it needs to be understood how draining it is. Those of us who've managed to cling to an optimistic viewpoint aren't free from our own demons. We slay them daily for the sake of showing up for you and yours.

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

Woman Files Civil Rights Lawsuit Over Denial of Pain Treatment

By Madora Pennington, PNN Columnist

In September of 2022, millions watched Tara Rule’s emotional video on TikTok, about a doctor who refused to give her a non-narcotic pain medication because it might cause birth defects. The doctor would not even name the drug, even though Rule told him she has no intention of having children because she has Ehler's Danlos syndrome (EDS), a genetic disorder that causes severe health issues.

The 32-year old Rule recently filed a civil rights lawsuit to better establish the illegality of refusing medical treatment to women simply because they are of childbearing age.

Rule’s fight began when neurologist Jonathan Braiman, MD, steered her away from an effective treatment for her agonizing cluster migraines, a common symptom of EDS. According to Yale Medical School, cluster headaches can hurt more than childbirth.

When Rule realized she was being discriminated against by her doctor, she surreptitiously switched on her cell phone to record their discussion, which is legal in New York state. 

Brainman can be heard in the recording asking Rule intrusive questions about her sex life, while ignoring her answers. Rule explained that she was already on a medication that can cause birth defects -- known as teratogenic drug -- and wasn't well enough to have children anyway.

Brainman patronizingly told her she might change her mind if she were to become pregnant. He recommended that she bring in her boyfriend to consent to any treatment that might cause birth defects. Rule left without getting the pain relief she needed for her migraines.

In the parking lot of Albany Medical Center, where the appointment took place, a distraught and tearful Rule made the video and posted it online. Her raw emotion and disturbing story quickly went viral, not only on social media, but in news stories.

In her lawsuit against Braiman and Albany Medical, Rule alleges she was retaliated against by the hospital system. Rule says she was ejected from an unaffiliated urgent care center because Albany Medical had told other hospitals not to treat her. She believes this was a violation of her medical privacy.  

Rule suspects she was blacklisted by other providers in her area. She tried to make an appointment with another neurologist, but was told she was “not an appropriate patient.” Her primary care provider sent a back-dated letter to Rule and her mother saying he was dismissing them as patients. That doctor gave no valid reason for the patient abandonment.

TARA RULE (TIKTOK)

Rule is on disability and lives on less than $1,000 per month. Being banned as a patient is a real hardship.

“Now I have to go to Connecticut to see physicians in a different hospital system. Or travel three and a half hours to New York City. With hotels and gas, it’s very hard. Some of these specialists outside the state are not fully covered by my insurance,” Rule said.

Traveling is made more complicated because Rule can’t stay just anywhere — she needs accessible hotel rooms. And she is accumulating thousands of dollars in debt.

After posting her video, Rule heard from many other patients who have also been discriminated against by their doctors. She felt motivated to find out what legal remedies existed.

With legal guidance, Rule wrote the civil rights complaint herself in what is known as a “federal question” lawsuit, an action that seeks to clarify a constitutional issue in US federal court. Rule has been advised that the medical care she sought does not fall under “conscience protections,” which allow doctors to refuse treatment on religious or moral grounds.  

In preparation for her lawsuit, Rule obtained her medical and insurance records, to help prove that privacy violations occurred. She discovered she had been billed for services not received, and believes her medical records were forged.

Albany Medical did not respond to a request for comment.

Rule’s lawsuit is potentially precedent-setting. It marks the first federal question case against a medical provider for refusing to provide teratogenic drugs because a woman is of “childbearing age.” Refusing to give routine medical care because a patient might get pregnant is discrimination. Patients cannot be forced into unnecessary restraints on their care.

"I am prepared for whatever happens,” says Rule, who is hopeful her lawsuit will help prevent other patients from being discriminated against by their doctors. 

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

How to Advocate With the News Media

By Barby Ingle, PNN Columnist 

So many in the chronic pain community wonder how to share their stories with the news media and connect with reporters. I have been doing that for years as a patient advocate, creating newsworthy content that helps educate the public about the issues we face.

The media are a powerful tool for advocacy because they can help you reach a larger audience and get your message out there. Networking with different media outlets has allowed me to spread my advocacy message further and make a real impact. I have built relationships with the media and gained access to publications I never had before. 

For example, I researched all of the major news outlets in Arizona, where I live, and learned who the producers, publishers and health writers are. I then connected and introduced myself to each of them.

Whenever I have a significant news item in the chronic pain or rare disease community that affects Arizonans, I reach out. Even when I do not have a specific story to pitch, I stay in touch. That helps to keep me in their minds. When they have a new story or need to verify something, they contact me for comment and to confirm the information. 

Media outlets can help you reach your target audience and spread the word about patient issues, products, services and disease-specific information. The more information we share effectively, the better access we’ll have to treatment. Media can be a friend or foe. We must learn to use them to get others involved.

We must also be mindful of our message and portrayal in the media, ensuring the information we provide is accurate and that the story is told to benefit our cause. We should also be prepared for any potential negative backlash from media campaigns. Choosing bipartisan, non-political topics, such as promoting individualized care and understanding how our medical system works can avoid this. 

We must also remain vigilant and aware of misinformation and bias in the media. It is essential to consider the impact of our message and how different communities may perceive it. 

Sharing Your Message

How can you share your message through the media to make a difference? Focus on issues that resonate with their audience and yours. Be bold in your advocacy approach. Feel free to challenge the status quo and use the media to highlight critical issues.

You can use a variety of mediums to reach your target audience. Be open to sharing on television, radio, newspapers, magazines, online, and in support groups. 

Communicate your message creatively to build interest in topics. You will need to offer something “new” to the media and be prepared to discuss your subject from multiple points of view, so that it connects with more people. Monitor the response to your message and adjust accordingly. Follow up and ensure the right message is heard.

Different people have different interests and perspectives. It's essential to tailor your message to specific groups of people so that they can understand and appreciate what you have to say. 

A 60-second message I could leave for a local news reporter might go something like this:

“Hello. I am Barby Ingle, a health advocate and chronic disease patient with multiple rare diseases. I live in Gold Canyon, AZ, and am excited to be working with my state senator on health bill SB1234.

I live with a rare pain condition called Reflex Sympathetic Dystrophy. It has affected every aspect of my life: financial, social, family and access to care. 2.9 million Arizonans live with a condition that involves pain; here in our district, approximately 150,000 are affected.

SB1234 is designed to help patients like me get better access to proper and timely care. I would love to set up a time to speak with you in detail or I can come in for an interview or live segment. I will email you a copy of the bill and supporting details. Please be on the watch for it in the next few minutes.

Feel free to call me back or email me to schedule a meeting. I look forward to hearing from you or one of your staff members soon. Thanks!” 

You should know the audience or readership of the media outlet you work with. That will help you understand what approach to take with your messaging and takeaways for that audience. It will make your pitch stronger, and give readers and viewers an opportunity to act on it. Be creative in your approach and use various media platforms. 

Additionally, by monitoring the response, you can identify which messages are resonating and which may need further adjustments. Following up with your audience shows that you care and are invested in the conversation.

Making or sharing a video, podcast or online post to explain your topic further is also possible. Don't just do the media as a one-and-done -- share it on social media to reach a wider audience.

To conclude, we must be willing to engage with the news media and the public to ensure our message is heard. The media can give the pain community the attention needed to spread a message of need.

Be it a lack of individualized care, a decision that negatively affects the pain community, or a desire for an amended state/federal law, our voices can be used to make change and make a difference in the lives of the patients. Ultimately, we are responsible for accurately communicating our message to the press and the public. 

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

There Is Help Out There, But You Have Look For It

By Ann Marie Gaudon, PNN Columnist

As a patient, you strive to be heard. Nowhere is this truer than when your medical issues are chronic and complex. However, when your physicians dismiss, minimize, invalidate, and/or ignore what you say, this can lead to a misdiagnosis or lack of diagnosis – which can lead to your condition getting worse.

Physicians rely on test results, but what if the test is an epic failure? What if there is no test at all to diagnose you?

Medical providers can erroneously blame your suffering on your age, race, sexuality, gender, weight or other factors that have nothing to do with your complaint. It’s also not uncommon for a physician to tell a patient that there is nothing at all wrong with them and that it’s essentially “all in their head.”

Even if your symptoms do not resolve, further testing may not be offered. You may not be listened to or you may have your symptoms downplayed.

I learned that the hard way after experiencing a significant back injury in 2017. I thought I was going to be disabled forever. My own medical system could not help me. I was told I had to wait six weeks for an appointment and if I was still in pain then, an MRI would be ordered.

The MRI was ordered and the imaging showed a significant injury. But my general practitioner could offer no help aside from a mild muscle relaxant. I was referred to an orthopedic surgeon who could also offer no help. I never considered surgery – truth be told it terrified me – but I was looking for any treatment to help myself heal.

Fate brought me to a CBC radio interview with Stuart McGill, PhD, Professor Emeritus at the University of Waterloo. I immediately bought McGill’s book “Back Mechanic” and started my healing journey with one of his master clinicians.

I learned the medical system knows virtually nothing about the injury I had and had no way to help me heal from it.

Fast forward six years. Here I am “back” to back pain; limping and having significant pain in my upper right leg. I found out that I had been engaging in activity that I should not have been (weight lifting) and not doing enough to strengthen my core.

Now a loss of height and stiffness in my spinal joints are giving me much grief. My L4 and L5 have lost their strength due to injury, and the lower joint L3 is feeling the lack of support.

The entire point of this column is to show you the difference between seeing a physician who has no knowledge and relies on unreliable tests, and finding and seeing someone who has the essential knowledge to help you heal.

Take a look for yourself. Remember, my symptoms were lower back pain, upper right leg pain and a limp. Here is a copy of my recent MRI report, which is the only test my GP has ordered. Also, here is a copy of my personalized treatment recommendations from Professor McGill, which I use along with his book. Notice anything different between these two assessments?

This difference means everything! Why? Because one is antiseptic, hopeless and sounds like my pain was of my own doing. The other offers the reason for the pain, plus exercise and treatment options I can do to make it better.

My lapse in keeping up with the exercises necessary to protect my spine was slow and happened over time. I’m not sure that I even noticed. By the time I did, I had already irritated my compromised spine.

If I want to be free of back pain, I will always have to do protective exercises. I will always have to take care. This is of little consequence, considering that pain and disability are the alternative.

Thank you, Professor McGill for being the compassionate and skilled researcher that you are. There are so many of us in need of real help with our back injuries. I am so grateful for you and your life’s work.

Here is what I have learned. Often there is a practitioner who is knowledgeable and skilled in helping you with a complex and chronic condition. But the only way I have found these people is by accident or by word of mouth. I don’t see this changing anytime soon.

Don’t give up hope and be prepared to investigate your options!

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.