Don’t Take Away Our Medicine

By Lynn Joyce, Guest Columnist

I am a 62-year-old woman who -- aside from my intensely painful back --- enjoyed a full life of work, swimming, going to the gym, outings to various places with my husband and friends, and running my household.

A few years ago, my back pain became so severe I had to move from my primary care doctor to pain management after all the solutions we tried, including physical therapy, various pain treatments, x-rays and MRIs could not diagnose or in the end treat me. I went to a doctor in Sarasota who gave me pain medicine. which helped a little. I also had several procedures under anesthetic, which again did not totally relieve the pain.

I was desperate, as I spent much of the day and night with ice packs on my back to ease the pain. My ordinary life went down the drain, my husband got fed up with me not being able to accompany him and looking after my home went downhill.

I cried as I went to bed early with a sleeping pill to take away the pain -- though this did not always work as the pain woke me up. I tried various types of pain medicine and the one that worked best was oxycodone.

Nearly a year ago my doctors finally found a combination of drugs that made me pain free and able to resume my normal life. I was ecstatic to be able to do all the things I enjoyed again and to be able to run my home and look after my family.

I then had a shock a month ago when my doctor told me that my medicine would have to be reduced. I had two tearful visits to his office, where he told me that starting July 1st I would receive only one oxycodone a day.  

LYNN JOYCE

My doctor knows that this is not even a therapeutic dose and yet is being forced to break his sacred oath to "First do no harm." After getting my life back, I was so upset that I would have to go back to my previous existence, where every day is full of pain and there is very little joy.

I am not a drug addict. I am a person that needs medication for a condition that curtails my enjoyment of life, just as much as another person who needs a drug to alleviate their condition or keep them alive. My doctor should be allowed and supported in the care of his patients, not vilified by government and media alike.

There are legitimate people who are truly suffering and need the medication that is being taken from them. I am one of these people -- the other side of this so-called crisis – and we are being ignored and used as scapegoats by the government.

I do not understand how such arbitrary, draconian laws can be passed in a modern society. This government’s heavy-handed solution to the "opioid crisis" is targeting the wrong people. We are not the ones selling drugs like fentanyl and heroin, we are just people with an illness. We are not lawbreakers, although some of us may be driven to escape the pain with illegal drugs or, in some tragic cases, suicide.

There are studies that totally refute the reasoning behind these opioid laws and guidelines, doctors who have tried to stop this from happening to their patients, and those who know the science and social reasons that show we are not the cause. We are not out there selling our drugs or "doctor shopping."

I see and read daily about politicians and stores that are jumping onto the false bandwagon to further their own careers and profits. Pharmacies that are too afraid or are taking a false moral stance about the prescriptions they will or won't fill.

There has been mishandling of prescriptions in the past, but systems have been put in place to remedy that. Yet the media screams about this person or that who has overdosed and stores like Walmart that will limit a person’s medication to seven days. I hope there are the few that get opioids for short term use if they need it, but they are not long-term pain sufferers who need their therapeutic doses daily to ameliorate their pain.

I have read that companies are being forced by the DEA to reduce their drug production so much that there are worries about hospitals not having enough to treat patients or with surgeries being delayed.

Those of us that need long term drug treatment are your family member, a friend, or a familiar stranger like the postal worker who you see every day. We are not the archetypal addict that people think of when the words “drug user” comes up. Think of a time in your life when you or someone you care about was in pain and were helped by medication to make it go away.

We have that pain every day and it doesn't go away without our medicine. The government or anyone else in a position of power who keeps on pushing this inhumane agenda should walk in our shoes for a day.

Lynn Joyce lives in Florida.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

When Do Guidelines Become Guidelines?

By Marvin Ross, Guest Columnist

Blaming doctors for failing to prescribe to guidelines that did not exist is the latest in the strange research coming out on the use of opioid pain medication.

That was the case for a recent study led by Dr. Tara Gomes, Dr. David Juurlink and others at the Institute for Clinical and Evaluative Studies (ICES) in Toronto, Canada. Both of these authors have a long list of research reports on opioids and Juurlink was one of the central players in the development of the Canadian guidelines for prescribing opioids for non-cancer pain. Juurlink is also a board member of Physicians for Responsible Opioid Prescribing (PROP), which is notorious for their anti-opioid views.

This particular study, called “Clinical indications associated with opioid initiation for pain management in Ontario, Canada,” is published online in the journal Pain. Gomes and Juurlink set out to evaluate prescribing patterns for patients who are “opioid naïve” to see if their prescriptions complied with guidelines adopted in the U.S. and Canada. In many cases, they did not.

“The U.S. and Canadian clinical guidelines for prescribing opioids for chronic non-cancer pain suggest that doctors should avoid initiating opioids at daily doses above 50 MME,"  Gomes is quoted saying in an ICES press release.

"Our study found that nearly one-quarter of Ontarians taking an opioid for the first time received a daily dose exceeding this threshold, and for certain indications such as knee, hip and shoulder surgeries and Caesarean sections, the dose was even higher.”

Here is the problem with their work. Gomes and Juurlink looked at prescription opioid claims for over 650,000 people in Ontario from April 1, 2015 to March 31, 2016 and compared them to guidelines that did not exist during the study period.

They defined as inappropriate any initial opioid dose that exceeded 50 MME (milligram morphine equivalent) or had a duration exceeding 7 days’ supply.  According to their findings, 17 percent of the opioid prescriptions were for periods longer than 7 days and almost one quarter (23.9%) were for dosages over 50 MME. This prescribing, they said, was not in line with North American guidelines.

By guidelines, they mean the Centers for Disease Control and Prevention guidelines that were released on March 18, 2016 --- two weeks before the end of the study period. The U.S. guidelines have never been formally accepted in Canada, although they were used to help shape the Canadian opioid guidelines that were released in 2017, a full 13 months after the study period.

How can one say that doctors were not compliant with prescribing guidelines when those guidelines did not exist at the time they prescribed? Doctors may be very clever, but I do not know of any who are capable of abiding by guidelines that only exist in the future

Aside from the study being biased and wrong, the misleading findings were picked up and portrayed by several Canadian news outlets as another example of doctors fueling the so-called opioid crisis. The Ottawa online policy paper Ipolitics ran a story with the headline, “A quarter of prescription drugs in Ontario exceeded dosage guidelines.”

Dr. Gomes also appeared on a popular radio show in Toronto saying, “We’re not really aligned right now with the guidelines in Canada.”

I have filed a formal retraction request with Dr. Michael Schull, the CEO of ICES. Schull referred my complaint to Gomes herself, who replied via e-mail on May 17 with:

“Your point regarding the timing of the guidelines in contrast with the timeframe of our study is an important one, and one that we made sure to address through our communications related to this study. In particular, in our study, we speak to the evidence related to harm associated with opioid doses above 50MME as being a core reason why attention should be paid to the high proportion of new opioid patients who are exceeding these doses. It is not simply that these doses exceed thresholds now recommended in guidelines, but that they have been shown in the literature to be associated with considerable risk of harm. We therefore need to consider how to mitigate this harm whenever possible.”

I pointed out in my reply that neither the media reports nor the press release cautioned about the discrepancy between the study period and the release of the guidelines, and I requested a public clarification and retraction. Schull replied that you cannot retract a study just because someone disagrees with it.

This is more than a simple disagreement. You cannot compare apples to oranges as they did. Schull’s final e-mail to me was we will agree to disagree, and I should take it up with the editors of Pain. Francis Keele, the editor in chief of Pain, informed me via e-mail on May 26 that they will be looking into the matter.

Broadcaster Roy Green, who has taken up the defence of chronic pain patients in both the U.S. and Canada through his syndicated radio show, offered Gomes the opportunity to bring with her 3 medical doctors to have an on-air debate on her research with him and me. So far, she has refused to respond.

I did point out to her boss that she works at the expense of taxpayers and since she is willing to discuss her work with a journalist who knows little or nothing of the topic, she has an obligation to talk to us.

I am not holding my breath.

(Update: Mr. Ross has been informed by the editor of Pain that the Gomes study has been revised to clarify to that the CDC and Canadian opioid guidelines were not in effect during the study period.) 

Marvin Ross is a medical writer and publisher in Dundas, Ontario. He has been writing on chronic pain for the past year and is a regular contributor to the Huffington Post.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

The Link Between Trauma and Chronic Pain

Ann Marie Gaudon, Columnist

It has long been accepted in my field that chronic pain is a frequent outcome of trauma. There is extensive evidence to suggest that people suffering from post-traumatic stress disorder (PTSD) report chronic pain with striking frequency regardless of the nature of the traumatic experience. You don’t need to have been diagnosed with PTSD to be negatively and chronically affected by trauma.

One strong and commonly referred to theoretical model explaining the connection between trauma and chronic pain is known as the Mutual Maintenance Model. A person may respond to reminders of trauma through stress response, which may include avoidant coping (trying to avoid your distress by zoning out with video games or drinking to numb yourself), fatigue and lethargy associated with depression, pain perception elevated by anxiety, and intrusive memories of the trauma itself.

These considerable mental demands limit one’s capacity to control or decrease their physical pain and have the opposite effect of exacerbating and maintaining pain. To put it simply, experiencing pain prompts memories of the trauma, and memories of the trauma prompt experiences of pain.

The end result is that a person is trapped in a vicious cycle whereby the symptoms of trauma and chronic pain interact to produce self-perpetuating psychological distress and physical pain.

A second model, called the Shared Vulnerability Model, suggests that the interaction of trauma, psychological vulnerability (anxiety, loss of control over thoughts and feelings), and a lowered physiological threshold for alarm reactions all influence negative emotional responses, resulting in the development of PTSD and the co-occurrence of chronic pain.

This chronic arousal of the nervous system may be responsible for the symptoms of both PTSD and chronic pain. There is research which suggests that chronic pain and PTSD are not necessarily distinct from each other, but rather connected and overlapping. The fact that sympathetic activity (the gas pedal to your distress) is increased, and parasympathetic activity (the brake pedal to your distress) is decreased, both in general and in response to trauma-related stimuli, is one of the most robust findings within the PTSD literature.

Disastrous events can strike any of us, at any time in life, and no one is immune. Some events are relational such as a school shooting or a rape, while others are natural disasters like earthquakes or floods. After any distressing or life-threatening event, psychological trauma may set in. One may go on to develop extreme anxiety, depression, anger, or PTSD and may have ongoing problems with sleep, physical pain and even relationships.

Healthy ways of coping include getting support, avoiding alcohol and drugs, seeing loved ones, exercising, enhancing sleep habits, and other methods of self-care. Certainly not everyone with chronic pain has experienced trauma and vice versa. However, there is extensive research to show that PTSD and chronic pain are intimately connected.

Seek an experienced trauma therapist if you feel you are not coping well. Trauma therapy is highly specialized, takes place in healing stages at your pace, and works to re-wire what’s become maladaptive in your brain by laying down new and healthier neural pathways. Click here to see a YouTube video that explains that process.

The work will be hard and challenging, but the good news is that many people heal from trauma and go on to live rich and rewarding lives. Some offer inspiration to others who have also endured life-altering negative experiences.

People become sick and pained, and people also heal. Suffering can skyrocket, and suffering can also take a nosedive. You do the work as if your life depended on it, because experience tells us it often does.

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 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

Reducing Supply of Opioids Will Not Stop Drug Diversion

By Roger Chriss, Columnist

Drug diversion is a massive problem. It plagues the entire drug supply chain, from manufacturer through wholesaler and distributor, to drug stores and dispensaries, all the way to consumers. It is particularly important for opioid pain medications because of the ongoing opioid crisis.

It is well established that the non-medical use of pharmaceutical drugs is an increasing public health concern. Most pharmaceutical drugs used non-medically are obtained from family and friends. There is little to no organized crime involved. And importantly, doctor shopping is rare.

An under-appreciated issue here is scale. According to the DEA, less than 1 percent of legally prescribed opioids are diverted. The sharing or selling of individual prescription pills is small compared to the impact of diversion higher up in the supply chain. For instance, Effingham Health systems just agreed to pay a $4.1 million settlement as a result of a DEA investigation into reports that tens of thousands of oxycodone tablets were believed to have been diverted for four years.

Similar reports about large-scale diversion abound. The Associated Press reported incidents of diversion at about 1,200 VA facilities rose from 272 in 2009 to 2,926 in 2015.

And in 2013 Walgreens was charged $80 million for poor record-keeping and dispensing violations that let millions of doses of controlled substances to enter the black market.

In 2007, the Drug Enforcement Administration estimated that prescription drug diversion in the United States was a $25 billion-a-year industry. About one of every four thefts of methadone and OxyContin were attributed by the DEA to employee pilferage at pharmacies, hospitals and other healthcare facilities.

More recently, a 2017 survey by Porter Research, 96 percent of healthcare workers said drug diversion occurs frequently in healthcare. And 65 percent believe most diversion goes undetected.

Pill mills are even worse. In the book “American Pain,” journalist John Temple describes the impact of Florida pill mills on the east coast a decade ago.

“Florida pumped millions upon millions of doses of those narcotics—oxycodone, mostly—northward, not through a major criminal organization like the cartels of Mexico, but via thousands of individuals who streamed up and down Interstate 75 or flew from Tri-Sate Airport in Huntington, West Virginia, to Miami International, on a flight nicknamed the Oxy Express,” Temple wrote.

And none of this is remotely new. In the book “Dark Paradise,” historian David Courtwright explains: “Diversion from maintenance programs posed a real danger, given that perhaps half of all licitly manufactured barbiturates and amphetamines ended up on the black market.”

So the claim by Attorney General Jeff Sessions that "It’s a common sense idea: the more a drug is diverted, the more its production should be limited” is both simplistic and misguided.

Sessions is assuming that limiting production will reduce diversion. But economic theory suggests the opposite may be true. Reducing supply leads to scarcity, which generally increases value. This in turn may create stronger incentives to divert more opioids into the black market.

Moreover, there is no evidence that people who divert medication are aware of and responding to DEA production quotas. Instead, the consensus is that people divert what they need and think they can get away with. In other words, diversion is an exercise in what economists call the “Tragedy of the Commons,” in which individuals each use a collective resource for their own benefit without regard for the effects on others.

And Sessions’ idea implies that reducing production won’t have any effect on medical practice. But there is an abundance of evidence to the contrary. There is an ongoing shortage of injectable opioids at hospitals around the country. And despite claims to the contrary, opioid analgesics cannot always be replaced or substituted with other pain relievers.

Thus, more intelligent and nuanced approaches are needed. For instance, the NIH is sponsoring research to use advanced data analytics to detect drug theft and diversion in hospitals. Similar efforts at wholesalers, distributors, pharmacies and dispensaries are worth considering.

So while diversion is a major problem, it is neither new nor limited to individual consumers with prescriptions for opioids or other medications that have a street value or abuse potential. The seemingly obvious response of reducing supply could easily backfire. Instead, securing the entire supply chain, from manufacturer through distributor to point-of-sale to consumers, is a vital step in making sure that only the intended recipients of pharmaceutical drugs have access to them.

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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

A Funeral for My Health

By Crystal Lindell, Columnist

I want to have a funeral for my health. I want to go abroad and throw its ashes into the sea while wearing a beautiful black dress and Jackie O sunglasses to hide my tear-stained eyes.

I want to take a week off work and forget to shower while everyone brings me casseroles. And I want all of my friends and family to acknowledge what I’ve lost with slideshows and poorly written eulogies that succeed in making everyone cry.

I want to drink too much wine in a vain attempt to numb the pain, and maybe even take up smoking and a few bad men.

I want to sit around with lipstick stained coffee cups late at night telling stories about how amazing it was — my health.

How it let me lead so many youths on mission trips to far-off places. How it let me fall in love so many times. How it let me shower without pain, lured me into believing I would be immortal, and how it allowed me to travel the world.

I want to take all the time I need to figure out how the hell I’m going to live the rest of my life without it. How I will find love, be independent, and survive all of my physical limitations.

And I want the planet to just stop turning for one second while I catch my breath and adjust to the fact that world is a different place than it was.

The obituary would read as follows:

Crystal Sue Lindell’s health died after a 5-year long battle with her body. Her health was 34.

News about the loss came via email from her doctor when he confirmed her worst fears: She likely had hypermobile Ehlers Danlos syndrome (EDS) -- a diagnosis that meant that she would not only never get better, she would likely continue to get worse.

Her health is survived by her body, which will, unfortunately, carry on, in immense pain, despite the loss.

There is no cure for EDS, and as such, her health is completely dead.

She looks forward to seeing her beautiful health again one day in the afterlife, where she hopes it will be waiting for her among the stars.

In lieu of flowers, Crystal asks that donations be made to EDS Awareness, a non-profit online resource for the EDS community.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Are You ‘Paingry’ About Your Pain?

By Ann Marie Gaudon, Columnist

I’ve learned the hard way how you can stress anyone at all. Put these three factors in their life: Uncertainty, lack of information, and loss of control. Chronic pain patients are slammed with all three.

The stress can manifest itself in a variety of ways -- including anger -- and pain patients have a lot to be angry about. I’ve heard it called “paingry” -- which might even be cute if pain didn’t have the capacity to obliterate lives. People in pain typically experience greater anger than others because they carry the burden of many frustrations related to work, finances, relationships, health care systems, limitations, losses, etc.

We all tend to resort to anger to protect ourselves because someone or something has done us wrong. We protect ourselves from feeling what is “underneath the anger” which is emotional pain and feelings of vulnerability. Pain patients often have these feelings in spades. Anger is a natural, adaptive, emotional response when we feel threatened. It is the “fight” in the fight-flight-freeze response.

It’s no surprise that for chronic pain patients, anger arousal is associated with greater pain intensity, muscle tension, and interference with function and relationships.

So is anger regulation, whether it’s expressed in an outburst of anger (blowing up) or inhibited as anger (stuffing it down).  Blowing up won’t help you, but it will make you untouchable. You don’t want to be touched and nobody wants to touch you either.

Stuffing it down merely buries problems, which won’t go away and can lead to seething anger. These things are bad for everyone’s health and worse if you have chronic pain.

If you’ve got chronic pain, you’re going to be frustrated a lot of the time and acceptance of your condition becomes important. However, even learning acceptance can spark anger. You may think, “Why should I have to accept this? What have I done to deserve it?”

Understand Your Anger

Ironically, getting angry is not the problem. The real problem is a lack of awareness that anger is building into destructive ways of expressing that anger, and poor resolutions when we blow up in anger.

Here’s my message to all chronic pain patients: Don’t waste your anger, put it to work for you.

Understanding your anger is important. It is not caused by anything outside of you but is a response – sometimes not even conscious – that you make based on your interpretation of events. Feeling betrayed by your body? Doctors underestimating your pain? Suspected of malingering at work? Hard up for finances? Relationships breaking down? Denied or restricted medications? Stigmatized and discriminated against because you need opioid pain medication?

I don’t know about you, but I’ve come to loathe the phrase “drug seeking behavior” in reference to a legitimate pain patient because it’s so misguided. “Pain relief seeking behavior”? Now you’re talking.

Anger is an assertion of your most basic rights as an individual. Angry feelings need to be validated or acknowledged by yourself and others in order to move on to problem solving. You’re going to need a commitment to optimal pain management and to process your anger in a healthy way. The question then becomes, “How am I going to live with this in the best way possible?”

What Is Anger Telling You?

Anger and other raw emotions can be considered warning signs to things that we care about. Feeling enraged about your life with chronic pain can be a signpost that you value health, a productive life, want to be cared about authentically, and that you are not being treated fairly. If we didn’t experience anger, we wouldn’t have the message. It is a very healthy and necessary emotion to help us protect ourselves.

What is your anger telling you? If you misunderstand the message or do not act on it, your body will react and your pain will be escalated. Know that. It’s also crucial that you look for primary emotions. Those will be the underlying the hurt, vulnerability, and feelings of unfair treatment. They can be quite uncomfortable for a lot of folks.

Think of an iceberg. The much smaller top portion that you can see is the anger. What is not so obvious is the much larger mass underneath the water. That is your emotional pain and what you need to process and feel for all its worth. You need to acknowledge the entire iceberg; really get to the bottom of it. Secondary emotions like anger are often not helpful, especially if it leads to rage. Use your anger as a tip off that you need to look deeper to alleviate your distress.

Plenty of chronic pain patients need help with anger because they have so much to be angry about. See a therapist. There are many questions you will need to address. “Is there any unfair treatment in my life? Am I being honest and authentic about how I really feel? Are my needs being met? What is my message and what needs to be changed?”

You can get help becoming aware of your emotions on your way to accepting them. You can learn to take actions guided by these emotions – and put them to work for you.

If you’re a pain patient with no history of mental illness, yet you find yourself damned angry, breathe easier. You couldn’t be more normal. Pathologizing you with a mental health disorder and treating it with medication will not help you with your anger. Get help to listen to your inner dialogue.  See anger as a useful emotion. It’s telling you something that needs tending to.

I have a simple but effective strategy. It doesn’t involve diagnoses, medication, or creating spaces between myself and another person. Rather, I lean in and rely on empathy, respect and compassion for a fellow human being who is clearly overwhelmed with torment. Quietly and gently I ask, “Is it okay if we talk about your suffering?” The floodgates open. Know that is normal too.

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 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

The Search for a Chronic Pain Gene

By Roger Chriss, Columnist

The book “Chasing Men on Fire: The Story of the Search for a Pain Gene” by Yale University neuroscientist Stephen Waxman, MD, describes the hunt to understand and treat a rare neuropathic disorder called erythromelalgia – also known as burning man syndrome.

Inherited erythromelalgia is a rare painful neuropathy that causes severe burning pain and skin redness. Attacks are periodic and commonly triggered by heat, pressure, mild activity, exertion, insomnia or stress. The burning pain occurs in small fiber sensory nerves.

The book includes 13 research papers by Waxman and his team that illustrate the the process of discovering that the gene SCN9A is responsible for erythromelalgia, as well as idiopathic small fiber neuropathy. Waxman shows considerable understanding of the plight of people with these disorders.

“Since their neurological examinations were often normal, the complaints of patients with small fiber neuropathy -- which occurred without physical signs of disease of the nervous system that can be seen by the physician -- were, in the past, often dismissed as being of little consequence, or as having a psychological origin,” he wrote.

But the disorders are genetic. And understanding them has wide-ranging potential value. These mutations, once identified in families with rare inherited diseases, can teach us important lessons about other medical conditions.

Waxman cites the famous example of familial hypercholesterolemia, a rare metabolic dysfunction whose understanding led to the development of statin drugs.

Waxman’s work suggests that similar advances may be possible for other neuropathic pain disorders. Waxman and his research team found that “neuropathic pain reflects dysfunction of the nervous system and can occur when DRG [dorsal root ganglion] neurons take on a life of their own and generate pain signals even in the absence of a noxious stimulus or inflammation.”

Eventually, Waxman was able to show that one change in the genetic code for this gene was responsible. In other words, erythromelalgia and inherited small fiber neuropathy are the result of genetic mutations – debunking the theory that patients with these disorders have psychological issues.

“Surprisingly, despite their history of chronic pain, on psychological testing we found that only two subjects displayed signs of moderate anxiety and depression,” Waxman explains.

Rigorous clinical testing confirmed these ideas. Waxman and his team began by doing human studies on erythromelalgia, then moved on to small fiber neuropathy in 2010. They found evidence that genetic mutations may contribute to disorders of pain signaling. Understanding the exact pathophysiology of these painful neuropathies opens the door to new and more effective treatments.

“Identification of specific molecules that play key roles in axonal injury might provide a basis for therapies that would prevent, or slow, the degeneration of axons, thus halting or slowing the progression of peripheral neuropathy,” Waxman wrote.

The first drug tried was the sodium channel blocker carbamazepine. Pre-clinical studies in people confirmed that it does have a protective effect. Additional work using a research drug nicknamed “771” shows similar promise.

Research into leveraging this hard-won knowledge is ongoing. This work could ultimately lead to new treatments for a wide range of neuropathic disorders, including trigeminal neuralgia, diabetic neuropathy, and phantom limb pain.

The book “Chasing Men on Fire” amply illustrates the challenges of medical research and the importance of even seemingly small genetic variations in chronic neuropathic disorders. And it reminds us that rare disorders often provide invaluable insight into human disease and dysfunction that can benefit us all.

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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

Be the Best You

By Barby Ingle, Columnist

Recently Melania Trump unveiled her "Be Best” campaign, which focuses on the well-being of children, their use of social media, and preventing opioid abuse and bullying. The First Lady wants to promote healthy living, kindness and respect so that children are better prepared physically and emotionally to face the challenges of tomorrow.

“It remains our generation’s moral imperative to take responsibility and help our children manage the many issues they are facing today, including encouraging positive social, emotional, and physical habits,” she said.

Those are admirable goals. But I strongly believe that we need to make tomorrow the best it can be for everyone – including the pain community. The same challenges the First Lady sees for children are faced by everyone who is living in pain, disabled or is a caregiver for someone in pain.

Since 2012, I have been losing too many friends to suicide who are not being adequately treated or who don’t have access to proper and timely care. Instead of society stepping up and helping, I have seen the bullies (in our community and in the general public) berate and beat down people in pain who want to live, thrive and succeed despite the challenges they face. Pain patients are committing or attempting suicide at an alarming rate.

We can make a difference if we use our voices to encourage positive social, emotional and physical well-being. By living with purpose and exuding positive attitudes, pain patients will be better equipped to deal with the physical and emotional challenges we face.

In recent years, I have been happy to see many pain patients and caregivers use their voices to speak out and work to create the change we need. We have begun to see our stories and efforts get some attention in the local and national media.

Although we are just scratching the surface, we are making change happen. We have to continue creating that change with hope, resilience and strength more than ever.

I get many calls and emails from patients who have been poorly treated in their search for pain care, threatened on social media, and criticized for trying to show the plight of pain sufferers and their lack of access to effective treatment.

I have seen firsthand how this lack of compassion has affected both pain patients and addicts, who together make up more than a third of our society. Some addicts are stepping up and saying what is happening to pain patients because of sweeping measures to prevent opioid abuse is not right, compassionate or ethical. 

I hope that the efforts of both the pain and addiction communities will show the administration and Congress that we need to work on both the pain epidemic and the lack of access to proper and timely pain care.  I hope you will join in these efforts in your own way. It shouldn’t matter where we live, how rich or poor we are, or what our health is like. We should have less stigma and more compassion for the suffering. 

Ordinary people can do extraordinary things. Let’s make it our mission to have our own “Be Best” campaign. This doesn’t mean being perfect or making change in one day. It means recognizing areas where change is needed and coming up with solutions. A place to start is understanding and sharing core beliefs that we can agree on. There are four beliefs as a pain patient that I subscribe to:

1. Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions. 
2. Effective pain care requires access to a range of treatment options, many of which are currently being denied. 
3. Chronic pain is an unrecognized public health crisis with devastating personal and economic impact.
4. Allowing people to suffer with unmanaged pain is immoral and unethical. 

These goals were agreed on two years ago by over 70 healthcare and advocacy organizations in a letter to Congress urging it to implement the National Pain Strategy. Isn’t it time we started acting on that?

I believe that we can agree on actionable solutions that promote better well-being for all. I look forward to hearing your thoughts on tools and skills that will improve the social, emotional and physical health of pain patients. We need more than pain organizations to make these changes. We need patients, families, caregivers, providers and the public to help us solve the challenges we face as a pain community.

We have a purpose to be your best you. What is it that you can do to be your best?  

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. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

Our Government Is Murdering Its Own Citizens

By Lee Horton, Guest Columnist

I am about to start raising holy hell because I now have nothing to lose. The doctor that has been taking care of me the last 5 years is suddenly scared to death and cutting my pain meds, while my insurance is cutting my benefits and raising my deductible and co-pays.

I live on Social Security disability and a meager pension that leaves me with little extra cash at the end of each month. I can no longer afford to fight both disease, injury and now my government. All of these have become the enemy of good health.

I am no longer "entitled" to my life I guess. Since I'm not a taxpayer thru payroll any longer, they do not see me as having any value to this nation. I have accepted that my only future is to have no future at all.  That's what they have left me with. I'm not good enough, wealthy enough or important enough to save and treat humanely or morally.

I'm being discarded like the trash that my government thinks I am because I have a need for medicines that they are uneducated about and don't understand. 

The whole "Opioid Crisis" is just a massive coverup for our government's inability to stop the flow of illegal drugs that are entering this country by the truckload every stinking day. They are the ones that have failed. They are the people that have gotten us all in trouble. They are the ones that created a "drug problem" in this country.

LEE HORTON

Why is it that almost every other nation on the planet with more liberal drug policies has less of a drug dependence problem?  The answer is quite simple. It is because this country views every problem with a punitive solution. The perspective of our leadership is skewed to make everything appear to be criminal when it’s done by the public, but legitimate when done by the federal government.

We might even be seeing a foreign policy tactic by allowing China to export their drugs for sale in this country. Who the hell knows? Remember the “Fast and Furious” gun scandal, Iran-Contra, Noriega, Afghanistan and the Mujahedin? Point being, this government has done it before.

What I do know is that I'm done. I'll no longer be quiet, and I won't let them get away with murder. That's exactly what they are doing, our government is murdering its own citizens by putting us in the position of either suffering every day of our lives or ending our lives.

And we send these callous, heartless and unimaginative politicians to Washington DC so they can lie and hide the truth from their constituents. If any of those people in DC truly believed that the source of the opiate epidemic was the pharmacy, they would be educating themselves on these drugs and how they also benefit more people than they harm.

But we don't see anyone doing that, do we? We see politicians, department managers, and the heads of the FDA, DEA and other agencies all looking for someone to catch and blame so they can score some points with Congress and get a bigger budget next year.

A good general or military planner always looks for the potential "collateral damage" when putting together a battle plan. The FDA, DEA and Congress have not done that, or they would not have been painting with such a broad brush.

Patients Need to ‘Rise Up’

I'm done with all that BS. I probably only have a few years left, so if I am to have any chance at making any difference and helping anyone that suffers in chronic pain, I must start now.

I have spoken to my doctor about this and he agrees that the patients need to "rise up" and start making noise, and the public needs to be educated and told the truth about the overdose stats the government and media keep listing. The vast majority of opiate-related deaths and overdoses come from heroin, illicit fentanyl, and other illegal street drugs, not the prescription pain meds that they are using as a scapegoat.

This is as good a place as any to start my war on stupidity and ignorance.  I want others to hear why I need these medications that the public is being taught to blame the ills of society on. I have yet to steal a car stereo or rob a liquor store to support my “habit.”  THAT is what the government and the media want the public to imagine when they hear of someone taking opioids.

This is about the health and well being of American citizens that they are placing at risk. It's easy for them to live with collateral damage when it's in Syria or Afghanistan, when they don't have to see the faces and know who and how many they hurt. Let's see if they are still so eager to cause suffering when it's their own people.

All the work and risk by colonists to discover America and build a nation, free from persecution and suppression by a corrupt government -- out the window.  We’re right back where they started. Literally out of the 16th century frying pan and into the 21st century fire.

Is this proof that liberty, freedom and independence are not yet possible for the human race? Are humans insufficiently evolved? When I see deliberate, intentional cruelty and the persecution of anyone, it makes me stop and wonder.

Lee Horton lives in Texas. He has osteoarthritis, neuropathy, stenosis, Ankylosing Spondylitis, fibromyalgia and numerous broken bones due to workplace injuries and accidents. Before he was disabled, Lee worked for 40 years as an operating engineer in heavy construction.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

A Pained Life: The Shared Experience

By Carol Levy, Columnist

I'm watching TV. An ad for an eczema drug comes on.

“Sorry, I can’t make it,” a woman says to the person on the other end of a phone call. “It’s just my eczema again. But its fine.”

Later a co-worker asks, “Are you okay?”

As she scratches at her arm, she replies “Eczema. Its fine.”

The commercial is on a lot. Every single time I hear it, I get annoyed and then angry. You're itchy and have a patch or two of dry skin?  So what? It’s not the pain of CRPS or trigeminal neuralgia or another horribly painful condition. Big deal.

Then I catch myself.

I have a small area on my back, about the size of a quarter, right in the unreachable spot. It itches horribly. Sometimes it lasts for a short while, sometimes for days or even weeks. The doc has a name for it, notalgia paresthesia, but naming it is of no help.

There is not much to be done for it. I rub against the door jam, brush it hard with a hairbrush, put on all kinds of salves and ointments. Even the numbing meds don't help.

What if I had this itch in a lot of places on my body? What if I couldn't control not just one area on my back but a bunch of them? It would be unendurable.

I think of all the times I ask myself, the many times so many of us ask: “Why do other people have such a hard time understanding and accepting my pain? What if they could feel it, even if only for a minute?”

It's a good question. It begs an answer. But let's face it. It is unanswerable. Even the cliché “If you could walk in my shoes” never gets us anywhere.

Maybe there is another way. Not the theoretical, but the experiential.

What if we said: “Remember the pain when you broke your arm (or were injured or ill and in pain), how horrible that was? Imagine that pain being with you all the time. Imagine instead of a cast and some pills, there is no way to tame it, no way to know if the pain will ever go away or at least get better?”

Everyone at one time or another has been in our shoes, even if only for a snapshot in time. The shared experience is the cement for so much of life. A reminder of their time in pain time might be the foundation on which acceptance can be built.

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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Dear AARP: Stop Picking on Pain Patients

(Editor’s Note: Last year PNN columnist Rochelle Odell wrote an article critical of the American Association of Retired Persons (AARP) for publishing a special report entitled “The Opioid Menace.” The report claimed that many older Americans had become “new opioid dealers” who were fueling the opioid crisis by “selling their prescription painkillers to drug pushers.”

AARP recently published a new bulletin, which focuses on how scammers are bilking Medicare for $60 billion annually. Once again, AARP claims that Medicare fraud "puts deadly pills on the street" and helps fuel the opioid crisis. In response, Rochelle wrote this open letter to AARP’s editors.)

Dear AARP Editors,

I received the AARP Bulletin and at first found your cover story on Medicare fraud interesting. Fraud is a major problem that will need patients, physicians and law enforcement to resolve. It causes healthcare costs to rise, which many of us on Social Security and fixed incomes can’t afford to pay.

As I got towards the end of the bulletin, my anger began to rise as I read "The Opioid-Medicare Connection." You claim that “shady doctors are writing bogus prescriptions for opioid painkillers” using stolen Medicare ID numbers and that “the pills are then sold on the street for huge profits.”

“The practice is shockingly common, and the impact is severe. For Medicare, it means covering the cost of countless millions of high-priced pills that never should have been prescribed. At the same time, prescription opioids are responsible for an estimated 95 overdose deaths a day in the United States,” the article claims, without ever citing a source for that information. 

It brought me back to last summer when AARP published "The Opioid Menace." Why is AARP constantly attacking opioid pain medication? Why do you continually write misleading information about opioids? Could it be dollar motivated? 

Then I read about AARP's survey on medical marijuana, which found that a majority of older Americans “think marijuana is effective for pain relief and should be available to patients with a doctor’s recommendation.”  I have to disagree with the survey findings. There are many of us who have tried medical cannabis and received zero benefit. It did nothing for my pain. 

Then it dawned on me, of course insurance providers such as AARP would like more patients to use cannabis. As it becomes harder for us to get prescription opioids, many pain patients are turning to cannabis, a treatment that AARP and other insurers don't have to pay for. How much will that fatten your bottom line?

I find it hard to believe stolen Medicare ID numbers play that big of a role in the opioid crisis. Prescriptions for opioid medication are tracked more than ever, with doctors, pharmacists and insurers having instant access to databases to see just how many prescriptions a patient is getting.

I have been on Medicare since 1997 due to becoming disabled by Complex Regional Pain Syndrome (CRPS). There has never been a time that I did not have to present a picture ID when picking up an opioid prescription. And if I was unable to pick them up myself, a friend or relative had to present my ID confirming it was indeed for me, along with my current address.

Please explain how the "shady doctors" you referred to in your article are able to pull off this "shockingly common" fraud and make “huge profits.” As in last year's Opioid Menace article, AARP uses minimal references to support these claims. It was interesting you referenced only one physician who did this, only one. 

Medicare just published a new rule starting in 2019, which impose new limits on high dose opioids and requires “high risk” patients to see a specific physician and use a specific pharmacy. Think of the money you can save now. More patients paying out of pocket for medical cannabis and prescription opioids being reduced or stopped. 

Whatever happened to AARP being there for us older Americans?

Rochelle Odell lives in California. She’s lived for nearly 25 years with Complex Regional Pain Syndrome (CRPS/RSD).

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

Should You Record Your Medical Appointments?

By Barby Ingle, Columnist

My memory troubles started soon after developing Reflex Sympathetic Dystrophy in 2002. “Brain fog” or “pain brain” is a common symptom of RSD, fibromyalgia and other chronic pain conditions. Our brains have trouble focusing on short term memories and storing them for easy recall.

Even now, in a semi-state of remission, I have trouble saying the right words at the right time or remembering if I have seen a movie before. To help my memory and keep appointments, I started keeping a “to do” list and using a color-coded calendar and a medication dispensing system. I also made a habit of recording phone calls and conversations with my healthcare providers.

I’m not alone. According to a recent JAMA article, about 15% of patients in the UK secretly record their medical visits, often using their smartphones. I have been recording since 2003, after I realized that my memory was weak and that I needed assistance to better comply with my care between appointments.

How many times have you hung up the phone and your spouse asked, “Who was that? What did they need?” Or they came home from work and asked, “What did the doctor say?” or “What did you do today?”

And you can’t answer.

Before you think, “Oh, Barby must have been high on her pain medication,” that for me is a big fat NOPE. It happened to me when I was not on any medications. It is a symptom of my medical condition, not a symptom of the medications I take. For some patients on other medications that may be a problem, but it only adds to the already challenged mind of someone with chronic pain or traumatic brain injuries. The worse the pain gets, the worse their memory gets.

While you're talking, you think, “Oh, this is important, I will remember this.” Yet, you don’t. You can’t recall what you had for breakfast or when you last took your medication, let alone the intricacies of a doctor appointment.

Studies show that recording medical appointments reduces malpractice claims and leads to better understanding from patients on what their care is and why. This leads to better patient compliance and engagement in their own health outcomes.

The University of Texas Medical Branch is promoting patient recording of their visits. They tell patients it is an open policy that is there to protect them and their providers. Check out the video they created: 

Is It Legal?

I live in a state where recording a conversation only has to be known by one party. But if you are in New York or California, you have to inform and get permission from all those who may be recorded in advance.

Sometimes I record in secrecy, but most times I have my husband or sister record the appointment -- and it is quite clear what they are doing. In 15 years of doing this, I have only had one doctor ever ask me to erase the recording. That was because he had other providers in the room examining me and he talked about proprietary information that didn’t have to do with my medical condition.

I know that when I am under stress or have high pain levels, I need to record or have someone take notes at the appointment or both. It’s hard to remember if you’re supposed to take a new medication twice a day before meals, on an empty stomach, or once in the morning and once at night. Appointment times are also getting shorter and more filled with new medical terms and information that is important for us to remember.

In general, a healthy person only remembers about 25% of a conversation as soon as it is over. If you have a stressful chronic condition, even remembering that much is almost impossible. So why not record for your own safety? With most smartphones, all you have to do is press record at the start of the appointment and then hit stop at the end.

You’ll be better engaged, have an accurate account of the appointment, and be able to refer back to it when you get home and someone asks, "What did the doctor say?"

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. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

How CDC's Opioid Guidelines Killed My Mother

Sheila Ramsey, Guest Columnist

For the past year, I have been reading the heartbreaking stories being posted about the degrading and inhumane treatment of the elderly, critically ill and disabled persons by our government, healthcare institutions and physicians.

And all I can do is sit here and cry, thinking about the struggles that my mother went through for the last 25 years of her life. She was a diabetic for 40 years, had rheumatoid arthritis, osteoarthritis, degenerative disc disease, high blood pressure, depression and cystic lung fibrosis. These conditions caused her much pain every day.

She was placed on a low dose of hydrocodone 20 years ago. It did not completely erase her pain, but made it manageable to where she wasn’t completely bedridden.

Then in 2016, when the CDC came out with their opioid "guidelines," her doctor reduced her dosage three times. I watched her suffer immensely and she pleaded with him to raise it several times. He would not.

Her life became more miserable than before and her depression worsened. She even had to stop driving, relying on me and a few friends to take her to appointments and grocery shopping once a week. Which were the only times she got out of her small one-bedroom apartment.

In May 2017, her lung disease got worse and it was hard for her to breath due to panic attacks several times a day. Her pulmonary doctor placed her on a low dose of Ativan to reduce her anxiety.

JANET DIXON

As soon as her primary care doctor found out about that, he immediately gave her a choice of which illness she was willing to suffer from: panic attacks or chronic pain due to her many incurable illnesses. She chose the Ativan and he immediately stopped her pain meds. She then had to start using a walker instead of her cane.

In June 2017, she had a friend drop her off to see her lung doctor. While waiting for the elevator, she tripped over her walker, fell and broke her hip. She went into the hospital for surgery, caught pneumonia and had to be placed in a medically induced coma. She also had congestive heart and kidney failure. She was waiting on a lung transplant but did not make it. We had to take her off life support on October 25, 2017.

This was all due to complications from being in the hospital for a hip surgery that never would have been needed if she did not have to use a walker and had not been taken off pain medication! If her pain had been controlled, my mother might still be alive.

That’s why it angers me that our government is denying medication to patients that benefit from them. How in America can our lawmakers let this happen? I’ve written so many letters. I don’t know who else to contact or what else I can do to help all the people who have been brutally denied pain relief and subjected to humiliating and degrading treatment. Please if there is anything I can do to help stop this neglect, I’m all in.

I just want to let everyone who reads this to know that I feel for each and every one of you who is suffering, and I hope this ends soon. God bless you all.

Sheila Ramsey lives in Ohio. Her mother, Janet Dixon, died last year at the age of 69.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

An Open Letter to All the Doctors Who Missed My EDS

By Crystal Lindell, Columnist

I hate you. I actually hate you.

Well, maybe not all of you.

But most of you, yes I hate. Actually, hate is too nice word. I detest you. I loathe you. I have venom in my heart for you. I hope your favorite show gets cancelled after a cliff hanger. I hope your air conditioner breaks in your car in July. I hope your crush never likes any of your Instagram photos. I hope every single time you go through the Taco Bell drive thru, they mess up your order. And I hope your phone screen cracks, your laptop crashes and you lose everything you ever saved.

I was recently diagnosed with Hypermobile Ehlers Danlos syndrome (hEDS), a connective tissue disorder that not only explains why my ribs always feel broken, but also why I’m always covered in unexplained bruises, why I sprain my ankles too often, why my vision changed for no reason, why my skin is baby soft, and why I crave salt.

And so many doctors missed it. And I can’t get it out of my head.

Like the doctor at Loyola who told me to stop coming to see him because there was nothing else he could do about my pain.

And the other doctor at Loyola who looked right at me while I was sitting on the exam table in just a paper-thin gown and said, “Well there are two options. You either woke up with a completely unexplainable pain, or you’re a great actress.”

I was so caught off guard that I didn’t even realize he was accusing me of trying to get drugs for like a full 30 seconds.

I also hate literally every single doctor at the Mayo Clinic that missed this crap. You know how easy it is to do an initial test for hEDS?

Doctor: "Can you bend your thumb to your wrist?"

Patient: "Yes."

Doctor: "Yeah, you probably have it. Let’s do a full evaluation."

IT’S THAT EASY!!!

The Mayo Clinic missed it because they were obsessed with me going to their rehab clinic and getting off opioids, despite the fact that it wasn’t covered by my insurance and that they required a $35,000 upfront payment.

So yes, I hate all of you.

I also hate every single chiropractor I ever saw. Seriously, all you guys do is see people in pain, and it never crosses your mind to evaluate for EDS? Why are you not asking every single patient who walks through your doors if they can touch their thumb to their wrist? What is wrong with you?

Not to mention the fact that chiropractors have to be super careful with EDS patients, if they treat them at all, because things can dislocate and all that. It’s irresponsible of you not to be evaluating every single patient for EDS.

I also hate the pain specialist who berated me for not wanting a spinal cord stimulator. If he had evaluated me for EDS, he would have known that a spinal cord stimulator would have probably been a horrible idea for me. Like chiropractors, all pain specialists do is see people in pain. They should be evaluating every single patient they see for EDS too! 

The whole thing is so infuriating and frustrating. I sincerely wish I could go back to every single doctor I have seen over the last five years and personally tell all of them how much I hate them. And then I wish I could tell all of them to freaking check people for EDS. But I can’t do that. All I can do is write this letter and then try to move forward with my new life and my new diagnosis.

But if you’re a pain patient and you can touch your thumb to your wrist, get checked for EDS. Seriously.

And if you’re a doctor, do better.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Living in Denial About the Overdose Crisis

By Ann Marie Gaudon, Columnist

Most of us know that denial of reality exists, but why is this so? How can humans with the ability to consider, evaluate, analyze and resolve complex problems ignore the facts? Even when ignoring the truth might lead to disastrous results?

Conceived by Sigmund Freud as a defense mechanism (to “defend” us against that which we do not want to feel), denial has been a concept for many decades. To over-simplify the premise, it’s a belief that something is either true or false when the facts say otherwise. Why would we do this? It’s because people experience a broad range of powerful emotions and intentions, such as greed, pride, revenge, fear, desire and a need for status – just to name a few. The have a strong influence over our ability to interpret facts.

When the Canadian government introduced the 2017 Canadian Guideline for Opioid Therapy, the creators were in denial. They ignored medical facts about chronic pain and turned pain sufferers into sacrificial lambs for people abusing illicit opioids. Patients and doctors tried to tell the truth but were not allowed a seat at the table with the so-called “experts.”

Chronic pain patients have never, ever, had their pain needs met and now they fare much worse. They are in more pain and experience more death and disability due to forced tapering and suicide.

Deniers yell loud and long that opioid pain medications are not effective, dangerous, addictive and will kill you in the end. Except that the evidence does not support that. Those with the worst pain have necessarily taken opioid medications to cope. It was their strongest weapon and were usually taken without danger, addiction or death. Opioids gave them effective pain relief that helped them regain function in everyday life.  Deniers will neither believe nor admit to this.

Let’s take a look at some of the strong influences which spur deniers to ignore the facts. We can see through many interviews and articles that McMaster University’s chosen group for creating the Canadian guideline enjoyed inflated reputations as “progressive thought leaders” who were “experts in pain management.” Add in the prestige and desire for status that comes from speaking engagements, media interviews, and more committees to participate in. Imagine the pride and prestige from conducting more studies (despite knowing little about the study area), and let’s not forget the enormous sums of monies paid to them by our government.

Greed, desire and a need for status can easily veto reality. So can feelings of morality and “doing the right thing” for people, while living under the fictitious perception that they are making positive inroads into addiction and overdose deaths while saving chronic pain patients from themselves.

In the real world, what has been the impact of the guideline on addiction? Nothing.

What has been the impact on pain patients? Devastation.

Most people can’t seem to figure out why the very same dreadful outcomes keep happening until they are knee-deep in it. Health Canada said this week that over 4,000 Canadians died from drug overdoses in 2017, the most ever. Most of those deaths – 72 percent – were caused by illicit fentanyl, not prescription pain medication.

Jordan Westfall, President of the Canadian Association of People Who Use Drugs, was bang on when he wrote in the Huffington Post that “it should shame this country to no end that our federal government is still afraid to see this epidemic for what it is in reality… What’s killing people is drug overdose and an apathetic government.”

May I add that what has never been killing people are chronic pain patients and their medications. Remorse and shame are powerful motivators for living in denial. Deniers continue to believe that punishing patients will somehow decrease the alarming rate of overdose deaths.

Chronic pain patients have always known the emperor has no clothes. It is a fact that all over North America prescriptions for opioids continue to go down, while overdose deaths continue to go up.  Does this suggest a statistically significant relationship between prescription analgesics and overdose deaths?  Yet the deniers continue with the same old agenda, despite the disastrous situation they have created.

There is an annoying little fact about denial. It doesn’t work in the long-term. Reality always wins out and when that happens, the next step for the deniers will be to place misdirected blame onto someone else. Count on it. It’s already happening. Doctors put the blame on the guideline’s creators and the creators reply, “No, no, no…it’s the doctors who have misunderstood the guideline.”

Here’s a message to the Canadian government and to the plethora of advisory groups, committees, response teams, et cetera and ad nauseam that are funded with taxpayers’ money to deny the facts:

When you are consistently creating the same disastrous outcome over and over again, you are in denial. And if this shameful situation continues, it will only lead to more suffering and deaths.

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 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.