Patients Shouldn't Have to Choose Between Opioids and Mental Health Drugs

By Victoria Reed, PNN Columnist

I belong to several online chronic pain support groups. One thing I often notice is that many people say that they’ve been forced to choose between their psychiatric meds and their pain relievers.

Depression is a serious condition that affects many people in the pain community and is often accompanied by anxiety and insomnia. Anxiety is often treated with a class of medication known as benzodiazepines. It is primarily “benzos” that patients are being told to give up in order to continue receiving opioids.

The reason for this is that opioids and benzos depress the central nervous system and raise the risk of respiratory depression – which is slow and ineffective breathing. Mild cases can result in tiredness, daytime sleepiness and shortness of breath. More serious cases can lead to seizures, headaches and even death.

In 2016, the CDC told doctors to “avoid prescribing opioid pain medication and benzodiazepines concurrently whenever possible” and the FDA updated drug labels to warn about the “serious risks” of taking the medications concurrently.

This issue hits home for me because a close relative of mine is on psychiatric medication and also suffers from chronic pain. Currently, she only uses over-the-counter meds for the pain of fibromyalgia, but there may come a time when she might need a stronger opioid pain reliever, as fibromyalgia is progressive and tends to worsen over time.

Will she be able to get a prescription pain medication without having to give up her psychiatric meds? Doctors are already reluctant to prescribe opioids, especially if a patient is being treated with a benzodiazepine or another psychiatric drug, such as those used to treat ADHD.

As mental health conditions worsen due to the stress of the pandemic, many are going to need to stay on their medications. Doctors forcing people to choose between their pain meds and psychiatric meds is only going to worsen the problem of illicit drug use. Sadly, the number of suicides will increase as well.

Being in a situation of having to choose one med over another when you need both, is obviously never good. I hope that my relative never finds herself in this situation.

Many pain sufferers have taken opioids and benzos safely and responsibly for years. They should not be forced to choose between the two drugs, as long they are medically necessary and appropriate.

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

Does Opioid Medication Make You Euphoric?

By Carol Levy, PNN Columnist

“Dose escalation, dose reduction or discontinuation of long term opioid analgesics, have potential to harm or put patients at risk if not made in a thoughtful, deliberative, collaborative, and measured manner.

Clinicians have a responsibility to provide or arrange for coordinated management of patient's pain and opioid-related problems, and they should never abandon patients.”

That was written in a tapering guideline put out by the U.S. Department of Health & Human Services (HHS) in 2019. In some respects, it was an attempt to undo some of the damage caused by the release of the CDC opioid guideline three years earlier, which led to many patients being rapidly tapered and/or abandoned by their doctors.

Out of curiosity, I went back to the CDC guideline. A Google search took me to a 2016 New England Journal of Medicine article, co-authored by then-CDC Director Thomas Frieden, who explained the rationale for the guideline this way:

“Whereas the benefits of opioids for chronic pain remain uncertain, the risks of addiction and overdose are clear…. nearly all the products on the market… are no less addictive than heroin.”

How can patients fight against this kind of propaganda? The purpose seems clear: opioid medication and heroin are basically the same. And when chronic pain patients take them, they get addicted. Not only that, we are told, they enjoy it!

“Heroin and prescription opioid pain relievers both belong to the opioid class of drugs, and their euphoric effects are produced by their binding with mu opioid receptors in the brain,” reads information from the National Institute on Drug Abuse.

In other words, we enjoy our opioids because they make us feel “euphoric.”

I could not find any articles or research that asked people in chronic pain, “Do you feel euphoric when you take opioids? Do you enjoy the opioids you are on? Would you take them if you didn't have chronic pain?”  

No one in the online chronic pain group I administer or the others to which I belong has ever said or written, “Dilaudid makes me feel wonderful, it makes me feel high. I love it.”

But they have said or written, “Demerol makes me feel cloudy-headed and my mouth feels like cotton. But I can do more with my life now that I am on it.”

I cannot find research that asked us if our doctors have made us partners with them when tapering or ending our opioid prescriptions. Where are the papers that use us as the experts about the side effects we have when the reduction or withdrawal of opioids is forced on us?

HHS is right. It has to be a collaborative effort when doctors reduce or end opioid prescriptions. But it seems that most doctors are too afraid or unable to act as partners, instead seeing themselves as the ultimate authority.

Changes in opioid prescribing policy should have input from all of us: researchers, policy makers, doctors and patients. It should be thoughtful, deliberative and collaborative -- just as tapering should be a collaboration between our docs and ourselves.

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

Saving My Soul From a Real-Life Dopesick

By Cynthia Toussaint, PNN Columnist

While watching Dopesick, the Hulu series that dramatizes Purdue Pharma’s driving of the opioid crisis through their cash-cow OxyContin, I was traumatized to the point of hitting the pause button at least half a dozen times.

The filmmakers were so spot-on with their story telling, I anticipated and said names and organizations out loud before the actors did. You see, I was in the middle of this evil. And I was asked to be a part of the killings for money.

Watching Dopesick reminded me of those god-awful times. Recounting the untold number of people who got addicted to OxyContin and overdosed made me sick. Knowing Purdue and its accomplices nearly got away with it made me sick. How close I was to it all turned my stomach.

In 2003, about a year after I founded For Grace, I was deep in the planning of a California Senate hearing that would shed light on gender care bias toward women with high-impact pain. I loved every crazy-busy moment of this endeavor to give voice to women dismissed by the words, “It’s all in your head.” I was ecstatic to have three female state senators co-sponsoring my hearing that, to this day, remains the most requested event video in Capitol history.     

Out of the blue, Purdue Pharma’s Director of Community Outreach phoned. I’d never heard of Purdue before, but upon overhearing the call, my partner John handed me a note, telling me they were a pharmaceutical company that funded nonprofit pain organizations.

I was flattered that Brenda (not her real name) loved the work I was doing with the hearing, but more than a bit miffed when she recommended her own advocacy people be able to testify. As a start-up nonprofit, For Grace sure as hell needed underwriting, so I agreed to call and get to know her folk. What could it hurt?

I was pleasantly surprised when they were friendly and knowledgeable and, in the end, I chose to go with half my people and half Brenda’s that I and the senators’ staff vetted.

Things went sideways the morning of the hearing when Purdue and those who would testify met with us at the Capitol. After brief intros, Brenda asked for my written testimony and quickly edited it in red pen. I was infuriated by this unwelcomed intrusion.

Still fuming, I arrived late to my own senate hearing as I’d been yelling at John that they had no right to change my testimony just because they’d paid to fly some people in. Who the hell do these creeps think they are?                  

After the successful, standing room only hearing, I was beyond stoked and let the bad energy of the morning pass over dinner with legislators and staffers I adored.

Also in attendance were Purdue and their speakers. That night, at Purdue’s suggestion, we began laying the groundwork for a “Women In Pain” coalition. I was in heaven with the prospects of giving my movement a bigger platform.   

cynthia toussaint (right) testifying at 2004 hearing

Women In Pain (WIP for short) was For Grace’s exciting new project and the cause I wanted most to lead. Springing from a 2001 medical study entitled “The Girl Who Cried Pain” and a follow-up article in The New York Times on the neglect women face in getting their pain treated, I couldn’t wait for the world to learn about WIP. To have a coalition of nonprofit pain leaders and a deep funder behind our movement was a dream.

A dream that would slowly erode into the ugliest kind of nightmare.

When the coalition and Purdue began meeting, the first order of business was to establish an understanding that everyone would be working under For Grace’s umbrella, as we initiated the WIP concept and felt a deep ownership. In fact, we were strongly considering expanding our mission from CRPS awareness to the plight of all women in pain.

Though I’m known for my work ethic, I soon felt overwhelmed by my load. To keep up with For Grace’s everyday activities and the coalition’s needs, John and I were grinding through long hours, seven days a week.

Almost out of the gates, we were getting pushback from coalition members about seemingly everything. Jealousies erupted as I was getting the lion’s share of media attention due to my hustle and drive. Per their demands, I generated media coverage for all members, but that wasn’t enough. Some of them wanted me to script out their answers for interviews. I was beginning to feel beaten.  

‘The Correct Response’

One day I received a call from Purdue inviting me to give the keynote address for pain advocacy conferences they were underwriting in Denver and Philadelphia. The purpose of these events – or so I was told – was to train and inspire pain leaders to effectively interface with media and policy makers.

The person who’d be overlooking this affair was Dr. Richard Sackler, the grand dragon of the family-owned Purdue empire. At the event, Purdue minions were twisted like pretzels in their desire to please this unimpressive man, who struck me as distant and cold.

I was insulted when Purdue insisted that I take a media training class. In a taped, mock interview with their crisis management consultant, I was asked, “What treatment do you advise when a person gets a CRPS diagnosis?”

“Well, there’s a whole range of options out there, including alternative ones,” I answered, spreading my hands a yard wide. “Remember, what works for one person may not work for the next.”

Purdue’s consultant chided me. “As the up-and-coming pain star, you should rethink your answer. The correct response is to take OxyContin,” she said.

Stunned, I responded, “But that would kill people. There’s nothing to rethink.” I felt trapped in a queasy Twilight Zone episode, as not a soul in the crowded room of pain advocacy leaders and healthcare professionals backed me up.

That night, ensconced in our five-star hotel room, it dawned on John and me that everyone in this scheme was training to be a de facto sales force for OxyContin. We were the only schmucks not in on it, though Purdue was actively grooming me to be their #1 patient sales person.           

This bizarre, shady gathering left me with a rancid taste and my enthusiasm curbed for the coalition. But I forged on, at the behest of my advisors, to give Purdue a fair chance to find common ground, a notion I now laugh at.

Next, Purdue offered me an extraordinary opportunity to make WIP fly in an influential, national arena. I was invited to bring our project to “Women In Government”, a powerful organization comprised of female state legislators throughout the country. Thrilled, I introduced my cause at their western regional meeting in Honolulu, then prepared to close the deal at their annual conference in Tucson.

I must admit, I was enjoying Purdue’s lavish courtship – travel, the chauffeur-driven town cars, the choicest suites and the finest meals. After all, I’d earned these perks, I told myself. I was working damn hard and was extremely effective with my message. I knew I was good at what I was doing and it was gratifying to be recognized.

But Purdue continued their insidious attempts to control me. Before my speech, Brenda chided that I’d better knock it out of the park as they were spending a small mint. Further, I was not to go one nanosecond over my 20 minute speaking limit, or else! Hmmm, not the good luck pat on the back I’d hoped for.

Fuming, I made a beeline for the event coordinator, telling her of Brenda’s abuse. Her face turned beet red, angrily telling me that Purdue didn’t run their show. This kind woman reassured me to take a deep breath, then go out and do my thing. So I did.

During my standing ovation, the director came over and hugged me with eyes welling. Joy confided with the room her ongoing bout with chronic pain, along with her ringing endorsement of the WIP movement. Then I was circled by legislators, shaking my hand and thanking me. Most important, they said they’d do whatever I asked.

Later that day, Brenda showed me first-hand what my advocacy future would look like if I played nice with Purdue. During a special session, I watched a Broadway-level singer/actor/cancer survivor entertain the audience, giving them an update about her cause to promote a cervical vaccine. She was living my advocacy dream job – traveling the world, performing, making great money, all the while helping people. That afternoon, she captivated the room.

I had stars in my eyes. For the first time since losing my performance career at 21 due to CRPS, I was being offered a job that would completely feed me. And it was a more noble pursuit than entertaining, as I’d be helping, even saving, many people. But could I get Purdue to come around? They wouldn’t want my services solely to peddle OxyContin, right?

There’s much bigger fish to fry with our shared mission (or so I thought) to put chronic pain and gender care bias on the map. This was my great passion, and I was determined more than ever to thread that needle.

Purdue Wants More

But my naïve hope didn’t float for long. When we restarted our coalition meetings, the women were stone cold toward me, and I felt punished. Their jealousies were amping, and managing all the egos and expectations added to my overload.  I began feeling itchy that the coalition was grinding me to dust in an attempt to heist the project, leaving For Grace behind. The walls were closing in.

I called Brenda and voiced my concern. Oddly, she was warm and reassuring, voicing that, per our agreement, the project would never be taken away from For Grace. To the contrary, she said we were approaching a tipping point where the WIP movement would explode.

I was calm, for about a minute.

On the next call, the gates of hell broke open. The women were backing unethical suggestions from Purdue, including supplying a prominent link from our WIP website to Purdue’s OxyContin marketing page.

John went nuts, sternly stating that was a “slippery slope.” He exploded, “If we give them that link for their money, they’ll want more. And more!"

The women yelled him down, saying For Grace didn’t know how business worked. The back and forth warring finally ended when I pronounced, knowing full well Purdue was on the call, “I won’t be a whore for a pharmaceutical company.” The sounds of phones hanging up followed.

Soon after, I saw in a coalition member’s nonprofit newsletter that she and the others were launching a new organization. It was called “Women With Pain” and parroted our mission. Around that same time, I was abruptly dropped from planned media stories and speaking engagements. Clearly, Purdue’s tentacles ran far and wide. When I threatened to speak to the media about their dirty deeds, Purdue called with a bevy of their attorneys in tow, telling us thuggishly to put a cork in it.

I cried, I yelled, I screamed, I even begged God for mercy. What I’d given birth to had been heisted, and was going to be used to kill people. John and I got deeply ill with what I thought was an epic flu, but looking back, I see it was despair. I became despondent and we were convinced there was no path forward with the good work. Worse, I started thinking deeply about ending my life. I didn’t want to live in a world this soulless.

Saving My Soul

But the fire within hadn’t burned out, and after ample time to grieve, I was able to get out of bed. I was further lifted by For Grace board members who prodded me to not let the bad guys win. Ultimately, I saw that good things could be possible again.

While formally expanding our mission to Women In Pain, I used my persuasiveness to get the pro-bono services of a top-end intellectual property attorney. He sent every coalition member a cease-and-desist letter, advising them not to use the name and idea inspired by For Grace.

I was elated that the letter hit its mark. In fact, the rival organization’s name and announcement were taken down the very next day. Shortly after, I was informed the new coalition was dead on arrival and I knew I’d gotten Purdue, a multi-billion dollar corporation, to buckle.

That’s how I saved my soul from the Sackler family and their savage empire. And I’ve never looked back. Until now.

Those terrible years of trauma surged back while watching the evil dramatized in Dopesick. I was reminded that everything Purdue touched turned to rot. Worse, with few exceptions, everyone enabled them. Without hesitation, they all lapped up Purdue’s dirty money. To make this level of killing possible, Purdue bought support from a wide range of villains: the FDA, policy makers, healthcare professionals and, yes, pain patient advocates. You know who you are.

For years, I’ve watched bad people with bad organizations take bad money to do bad things. And the opioid crisis that Purdue spearheaded has made collateral damage of all of us with pain. Many who need opioids to functionally survive no longer have access.  Many good doctors who responsibly prescribed have been indicted. And for ethical pain organizations who still want to do good work, funding has dried up. I think it’s fair to emphatically state that everyone with pain is suffering in the wake of Purdue’s and their enablers’ sins.               

With apologies, I don’t have my usual up-beat take-away, no words of comfort. Just tears, and a plea. Watch Dopesick, study it, commit this atrocity to memory. Take my word, the pharmaceutical industry is doing just that, and there’s another Purdue in the making that will attempt to make billions off the suffering and murdering of millions. All in the name of pain care. 

I was this close to being one of Purdue’s statistics. But I lived to tell my story. Perhaps it’s not foolish to hope next time more souls will be saved.

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

Constant Pain Can Lead to Diabetes, High Cholesterol and Heart Problems

By Dr. Forest Tennant, PNN Columnist

Intractable Pain Syndrome (IPS) is constant pain with cardiovascular, metabolic and hormonal complications. Constant pain is a severe stressor that causes the adrenal hormones cortisol and adrenalin to rise in the blood as the body attempts to reduce stress.

These hormonal elevations can lead to serious metabolic consequences that need to be well known to persons who have IPS, as well as their family and medical practitioners. High levels of adrenalin cause blood pressure and the pulse rate to rise. When cortisol is elevated, it causes the hormone insulin and blood sugar (glucose) to rise in the blood.

If blood sugar remains too high for too long, a person can develop diabetes or pre-diabetes, which is often called “insulin resistance.” Most persons believe that diabetes is a metabolic disease and is unrelated to hormones. The fact is that insulin, cortisol and adrenaline are hormones.

In addition to diabetes, a person with constant pain is also at high risk of developing or experiencing any or all of the following: 

• Heart Attack

• Heart Pain (Angina)

• Stroke

• Dementia

• Arteriosclerosis

Some persons with IPS have died suddenly and unexpectedly, sometimes while asleep. Often these cases are falsely labelled as a drug overdose.

There are three reasons for sudden, unexpected death in persons with IPS who are undertreated and have cardiovascular, metabolic and hormonal complications.

• Cardiac Arrythmia

• Adrenal Failure          

• Hypoglycemia (Excess Insulin)

Every person with IPS needs to be evaluated for diabetes, pre-diabetes, hypertension, tachycardia and excess cholesterol. Steps must be taken to eliminate or reduce any or all of these IPS complications. Consult your medical practitioner at your earliest opportunity for an evaluation of these complications. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here. The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.     

What’s Missing in ‘Opioids: The Big Picture’

By Roger Chriss, PNN Columnist

Canadian family physicians Mark Dubé and Henry Chapeskie recently created a video called “Opioids: The Big Picture” to give what they describe as a “short history of how we got into trouble with opioids, how even a small number of opioid pills can lead to addiction, and why they should not be used in non-cancer chronic pain.”

Drs. Dubé and Chapeskie spend the first third of their hour-long video on the history of opioids, mostly the 19th century Opium War in China, and the remaining time on modern prescription opioids. They refer to opioids as a “global environmental toxin” which cause “narcotic neurotoxicity.”

They also claim that opioid-induced hyperalgesia is common, that no studies show any benefit to opioids for pain management, and that opioids cause permanent brain damage. They argue that the current opioid crisis is driven by the steadily increasing supply of prescription opioids and should be addressed the way we handle air pollution. They conclude by saying that “opioids are neurotoxic, cause pain, and are toxic to the individual and society.”

None of this holds up well to close scrutiny. The Opium War was about more than a “state-sponsored monopoly with an illicit drug.” In fact, there were two Opium Wars, with the first being about trading rights, open trade and especially diplomatic status, and the second war directed at expanding trade, including opium, between Europe and China.

The notion that opioids are a “global environmental toxin” comparable to air pollution assumes exposure is passive and inevitable. But opioids are not like mercury or asbestos, emitted as a contaminant from industrial processes that could be cleaned up. Their claims about neurotoxicity are also problematic. Although small-scale imaging studies do show changes to some brain structures upon opioid exposure, the significance of this is unclear.

Their emphasis on opioid-induced hyperalgesia (OIH) – the theory that prolonged use of opioids leads to greater pain sensitivity -- is also greatly overstated. A 2021 review of published studies found only 72 patient cases of OIH, all of which were easily diagnosed and managed by opioid rotation, opioid cessation or switching to non-opioid pain medications.

Last and most important, Dubé and Chapeskie claim that “there is no evidence (zero!) to support use of opioids” for chronic non-cancer pain. They cite the 2018 SPACE trial as their major source of evidence, although that study showed opioids were no better or worse than non-opioids for pain relief. More importantly, the SPACE study didn’t find any evidence of abuse, misuse, addiction or overdose among the 108 people on opioids for a whole year, which argues against the very risks that Dubé and Chapeskie describe as inevitable.

Dubé and Chapeskie point to a single study on opioid tapering that showed good outcomes. That 2020 study found only minor improvement in cognitive function after opioid tapering. Multiple other studies show the risks and harms of tapering often outweigh its benefits, especially when tapering is rapid.

Moreover, there are clinical studies showing that opioids are effective and safe when used appropriately. A 2021 German study, for example, found that tapentadol relieves chronic low back pain, and a 2017 review found tapentadol was effective and well-tolerated by patients with moderate to severe pain for up to two years.

The video “Opioids: The Big Picture” could have been a useful introduction to opioid pharmacology, chronic non-cancer pain, and clinical practice. It could have introduced current best practices for opioid initiation and tapering. And if the focus was to be on the public health risks and harms of opioids, then it should have followed the fine work of David Courtwright's book "Dark Paradise”, Sam Quinones's "Dreamland”, or Chris MacGreal's "American Overdose".

It is unfortunate that even in the 2020s we are still struggling to get basic information about opioids right. This is arguably part of why we have a worsening opioid crisis and deteriorating pain management situation.

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.  

Why Patient Advocacy for Rare Diseases Is Important

By Joanna Mechlinski, Guest Columnist

If you’ve been relatively healthy throughout your life, you tend to have a lot of faith in doctors. You believe that when a person gets sick, they simply go see a doctor and soon everything is better.

Movies and television only serve to bolster that impression, as characters frequently show up in hospitals with a baffling array of symptoms, only to have a doctor dedicated to the case quickly diagnose them.

Even if it’s a rare disease or condition which the doctor has never seen outside of a textbook, they will piece it all together successfully -- often continuing to puzzle it out after their work day has ended. The patient then receives medication or therapy from specialists. It’s understood that while recovery might take a while, it’s generally always possible.

Unfortunately, in real life, things often don’t work out this way. You might explain your symptoms to the doctor, who orders blood tests and other diagnostics. When the results come back, they’ll shrug and tell you they simply don’t know what’s the matter. As your symptoms increase, so does your desperation for relief, so you try other doctors and medical facilities, often with the same outcome.

In the U.S. we use the term “rare” to describe a disease that affects fewer than 200,000 individuals (in the EU it’s fewer than 1 in 2,000 people). But the reality is many of these diseases aren’t all that rare. They simply aren’t as common as things like breast cancer or diabetes. The National Institutes of Health’s Genetic and Rare Diseases Information Center says there are approximately 7,000 rare diseases.

In 2005, I was diagnosed with polymyositis, a rare disease that causes muscle inflammation and atrophy. I had never heard of it, nor had any of my family or friends. Go ahead and Google it -- you will quickly see just how little information exists, aside from basic definitions and the occasional patient GoFundMe. Yet per The Myositis Association, there are an estimated 50,000-75,000 people affected by a form of the polymyositis in the U.S.

Following my diagnosis, I made appointments with many specialists, some in world-renowned facilities. They seemed to know little more than I did, and I often found myself explaining various elements of the disease to them.

It would have been easy to simply give up. If much of the world didn’t even know my disease existed, then how could I hope for understanding from family and friends, much less treatment or a cure?

I learned a few lessons quickly about being a patient advocate, which I still follow today:

1. Tell your story: Yes, sometimes it’s hard to reveal personal details. But in this instance, I believe I need to use my life to educate others. What if someone else has a form of myositis, but is still undiagnosed? Both doctors and patients need to keep the condition in mind when viewing certain symptoms. I have written many freelance articles about polymyositis for various publications, and I am now writing a book.

2. Contact lawmakers: Yes, people often grumble politicians don’t do anything for them. But how can they even consider getting help for a problem they don’t know exists? Reach out to lawmakers at the local, state and federal level. Tell them about your disease and how it affects your life. Tell them what you and others with the condition need.

3. Connect with others: Thanks to the Internet, it is now easy to find people sharing an illness, regardless of how rare it is. It’s also easier to keep in touch when in-person visits may be difficult due to pain, fatigue, travel costs, etc. Making friends with people who have similar conditions can be very beneficial, particularly when sharing information about medications and treatments. It can also be a godsend to simply vent and gain support from a person who truly understands what you’re going through.

Under the guidance of the National Organization for Rare Disorders (NORD), the first Rare Disease Advisory Council (RDAC) was created in North Carolina in 2015. The goal was to strengthen the rare disease community’s voice in the state legislature.  

Patients and their families, caregivers and medical providers then banded together in other states. By the end of 2021, NORD reports that legislation creating more RDACs had been signed into law in Florida, Louisiana, Massachusetts, New Jersey, Ohio, South Carolina and Virginia. In all, Project RDAC contacted 254 legislators and introduce 11 RDAC bills.  

Being diagnosed with a rare disease while in my 20’s was not exactly among my childhood dreams for the future, but I’m far from resigned. I recall how diabetes - today usually considered a fairly manageable condition - was a death sentence until well into the 20th century, when insulin was discovered.  

Who’s to say that polymyositis and other rare diseases might not veer onto a similar path at any time? Until then, I will do my best to advocate and educate. 

Joanna Mechlinski is a former journalist who currently works in school transportation. She lives with lupus, polymyositis and fibromyalgia, and is passionate about advocacy. 

Pain News Network invites other readers to share their stories with us. 

Send them to:  editor@PainNewsNetwork.org. 

How to Overcome Suicidal Thoughts and Find Hope

By Ann Marie Gaudon, PNN Columnist

Over the course of our lives, every single one of us will have painful thoughts and emotions in response to adversities and challenges. A sense of hope that we will either cope with or overcome the adversity helps to keep us going.

But when all hope is gone, this can lead to the desire to leave life itself. Hopelessness and helplessness are key factors in the decision to escape a life that is seen as unbearable.

Globally, we lose over 700,000 people to suicide every year. That tells us millions of people are suffering, both mentally and physically, struggling and searching for relief which too often does not come.

Suicide causes heartache and grief for those left behind, affecting families and entire communities. If that weren’t enough, knowing someone who died by suicide is linked to an increased risk for suicide and other mental health challenges.

Suicidologists have developed various theories in an attempt to identify common factors across suicidal experiences. Here are three:

Interpersonal Theory of Suicide

The person no longer feels they belong in a healthy sense, but rather feels like a burden to others. They see their situation as never changing, and therefore hopeless.

Three-Step Theory of Suicide

Step 1: The combination of pain and hopelessness causes suicidal desire.

Step 2: Suicidal desire intensifies when pain exceeds or overwhelms connectedness.

Step 3: Strong suicidal desire progresses to suicide attempts if a capability for suicide is present.

Although this theory differs in certain ways, it similarly advises that psychological or physical pain must be accompanied by hopelessness to cause suicidal desire.

The Integrated Motivational-Volitional Model

This model’s hypothesis is that “entrapment” or feeling there is no escape from the adversity drives the suicidal behaviour. Entrapment refers to a specific sense of being stuck, whereas hopelessness refers to a sense of pessimism. Hope appears to “weaken the relationship between entrapment and suicidal desire.”

The aim of these researchers is to identify the factors which shift suicidal thoughts into suicidal behaviour, in order to reduce or eradicate these factors and save lives. They all posit that hope is necessary even in the face of intolerable pain, whether physical or emotional.

One thing I have learned as a therapist is that people have a choice only if they believe they have a choice. Hope must ring true to a person’s reality.

Seek Social Support

Research shows us that social isolation is associated with increased risk of suicide, while social support is related to a decreased risk. Who in your life’s circle has the headspace to support you, listen to you, and help you when needed? Your spouse, family, friends, neighbours, colleagues, and clergy – can you count on their support?

Sometimes, a person’s only support is their therapist.  Support is a protective factor and necessary as an antidote to social isolation.

Attend to Your Emotions

Trying to avoid or distract yourself from your emotions will only have them rebound back to you and be even more invasive. As emotional pain is one driver of suicidal thoughts, get some help to process what you are feeling.

Can you notice and name what you are feeling? Can you accept what you are feeling without being overwhelmed by it? Do you recognize the message within the emotion? Are you aware of, and capable of self-compassion directed toward your pain?

Quite often I see the need for self-compassion and the need for support from others simultaneously. Once you can let your emotions be just as they are, are you able to shift yourself into soothing your psychological pain? Are you capable of moving into a more valued direction? 

If you have answered “no” to any or all of these questions, a trained therapist can help you.

Broaden Your Perspective

The hopelessness theory of depression tells us that most people who feel hopeless believe their struggles are unique to them (internal) or about them (global struggles), and that these struggles are unchangeable.

Therapeutic work can help to unravel why a person might believe that they themselves are hopeless. Talk and other techniques can reveal where these beliefs began and why. When the origins of erroneous, negative beliefs are understood, they can be replaced with beliefs that are based in reality and not a product of emotional reasoning (e.g. “I feel like I have no worth, therefore it must be true”).

Global struggles can often be tamed with the support of a group. Support groups offer a multitude of protective factors such as encouragement, friendship and guidance. You can be with people who can truly empathize with you and comfort you as an antidote to your own disappointment, frustration and confusion. Peer support can be powerfully protective and also help to dissipate any stigma you may be feeling toward yourself or situation.

Gain a Purpose

The antidote to feeling powerless is to feel empowered. Again, peer support from a support group can contribute to a sense of empowerment and purpose. Reduced isolation, empathy from others, and an increase of information and awareness are all threads in the fabric of assertion, better life choices, and a sense of hope that the situation can be changed. If it can’t, then your perspective about the situation can be improved.

Support groups are effective because they bring together people who all share something in common. This creates a support system. With most gatherings now online, you can find a support group for virtually any issue.

For example, I am a person in pain, so I can find these similarities, support and empowerment from an organization in my country: The Chronic Pain Association of Canada. I also belong to a smaller support group with a very specific ailment in common. One of my diagnoses is interstitial cystitis/painful bladder syndrome, so I also belong to The Happy Pelvis for the same benefits.

The Takeaway Message

No one can make it alone. Life is a collaboration and we often need help and support. There is no shame in this, it is the human condition. Suffering is what unites us -- it does not separate us from the crowd.

Whatever your challenge, you are not alone. Get the help you deserve and surround yourself with supportive allies. When you are feeling more empowered and stronger in general, you can be a part of change. That change may be within yourself or it may be a part of the outside world. Where there is help, there is hope.

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. 

If you are in crisis and live in Canada, help is available by calling the Canada Suicide Prevention Service at 833-456-4566. If you live in the US, help is available by calling the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). You can also call 911 for immediate help..

The Pros and Cons of Medical Marijuana

By Joanna Mechlinski, Guest Columnist

If you live with chronic pain, chances are someone has mentioned medical marijuana to you. And why shouldn’t they? It’s constantly being discussed in the media.

So far, 36 states have legalized medical marijuana, and many have extended the qualifying illnesses to include some chronic pain conditions. A 2021 Pew Research Center survey found that 91% of American adults approve of the use of cannabis for medicinal purposes. And a recent Gallup poll found that over two-thirds of adults believe marijuana should be legal for both medical and recreational use.

So to the average person, trying to be helpful, it might seem that cannabis is a simple and obvious answer to a pain patient’s prayers. Unfortunately, it doesn’t work that way for everyone.

In 2019, my rheumatologist suggested I try medical marijuana. Considering that I’d been living with chronic pain for over fifteen years, thanks to lupus and polymyositis, and tried all sorts of medications and treatments to no avail, I was understandably excited.

Although I’d had my hopes dashed numerous times already, I still continued to feel a tiny bit of hope whenever a doctor suggested something new. Maybe, just maybe, this would be the thing that would help alleviate my life of never-ending pain and fatigue. If so many other people were turning to medical marijuana, surely it had to be a good thing?

Like many other pain patients, I was tired of the constant battle to prove I “deserved” opioid painkillers. I was also tired of never daring to mention the fact that opioids were the main reason I was still a productive member of society. Many people choose to ignore that fact and focus instead on the potential for addiction.

Unfortunately, it’s not as if you can just walk into a marijuana dispensary and be handed a life-altering concoction. There’s a lot more to it, much of which no one ever seems to mention.

For starters, not every medical professional is legally permitted to certify a patient for cannabis, which is required in many states. You need to find a doctor or APRN (advanced practical registered nurse) who is --- and it’s usually not cheap.

Here in Connecticut, the practitioner I saw charged $175 for new patients and $125 for a renewal. Then, along with your application, you need to send the state $100. This gets you a medical marijuana certificate, good for only one year, if you have a “debilitating medical condition” recognized by the state.

Different states charge different prices and your certificate or license can last longer, depending on where you live. There are also some discounts - again, not everywhere - for veterans and low-income individuals. Still, the various costs can add up quickly, and they are not covered by insurance.

Your first visit is a consultation, at which you and a staff member discuss your condition and symptoms. Unfortunately, it’s not a one-size-fits-all kind of thing. Your body may react differently to a particular marijuana strain or product than another person suffering from similar symptoms.

So, if you’re like me, you may have to try a wide variety of tinctures, oils, vapes and other products. Each will cost, on average, between $50-$100 for a few weeks’ dosage. You can only pay with cash or a debit card.

Over two years, I returned to the dispensary numerous times, hoping the next product might be the one. But at best, there was just a slight improvement. I was wanting so badly for cannabis to work that it might have solely been in my imagination.  

At any rate, I wasn’t willing to keep paying large amounts of money for something that was causing me about 5% improvement at best.  More realistically, it was probably closer to zero.

Does all this mean you shouldn’t give medical marijuana a try? Of course not. If you and your doctor feel it may alleviate your pain and is a good option, you should definitely give it a try. Just keep in mind there are a lot of factors to consider, and patience is definitely key to the process.

Joanna Mechlinski is a former journalist who currently works in school transportation. She lives with lupus, polymyositis and fibromyalgia, and is passionate about advocacy. 

Pain News Network invites other readers to share their stories with us. 

Send them to: editor@PainNewsNetwork.org. 

Why Doctors Need to Address Stigma and Guilt Caused by Chronic Pain

By Dr. Joseph Cabaret, Guest Columnist

Chronic pain is known to affect more than one in five American adults. That’s about 50 million people who feel pain most days or every day – leaving them trapped in a cycle of physical pain. Worse yet, a recent study found that those suffering from chronic pain often deal with guilt-induced feelings and social stigma as a result of it.

To those unfamiliar with the reality of living with chronic pain, feeling guilt over such a condition may seem strange. But the reasons for it become pretty obvious once you reflect on them and recognize the harm they cause. Guilt-induced feelings can lead to severe mental health issues and social stigma that debilitate a chronic pain sufferer's life even more.

What can medical professionals and the general public do to alleviate these issues?

Chronic pain is typically described as long-term pain that lasts at least three months and has no end in sight. It is both a physical and an emotional experience, although sadly the emotional component is rarely addressed adequately by patients or healthcare professionals.

Pain is often attributed to physical illnesses such as fibromyalgia, back problems, irritable bowel syndrome, post-surgical pain, cancer, arthritis, or even just headaches or migraines. Usually, the underlying emotional causes or contributors go undetected, and since there is often no easily discernible tissue damage present, its existence is not always obvious to a casual observer. But it is ever-present and can severely impact an individual's ability to live a full life.

Therapy, rather than a cure, is often the only recourse chronic pain sufferers have. This can take the form of art, music, or other hobbies and passions the patient has. The aim is simply to take their minds off the pain and give them an emotional outlet.

For many chronic pain sufferers, the worst part is not being able to plan for future events because they can’t predict how they will feel on a particular day. This leads to missed workdays, cancelled social events, and an ever-increasing downward spiral in their mental health.

Chronic Pain and Mental Health

Having to live with such a condition is bound to have negative consequences. Patients often suffer from depression, feelings of inadequacy, negative changes in identity, and difficulties with getting enough sleep.

Then there’s the added frustration of often not being able to make others understand the reality of their experience. To make matters worse, it is difficult for most patients to understand and acknowledge the impact that these psycho-social-spiritual factors have on their lives and why biomedical therapies alone don’t help. This can lead to feeling that they are somehow to be blamed.

Pain-related guilt often stems from a patient’s inability to convince others that their condition is legitimate. Since the causes of the pain are often not readily apparent (even after a medical examination), patients are sometimes treated like their condition is not real.

Doctor’s appointments often lead to a long line of questions that can make patients feel like a fraud or that their condition is entirely psychosomatic. This isn't helped either by the social stigma that sometimes puts the blame on the patient for not managing their condition well enough. Then there’s the personal guilt a patient can feel from not being able to fulfill their duties and responsibilities at home or at work.

Left unchecked, all of this can lead to severe mental health issues that can result in drug or alcohol abuse, total mental breakdown, and even suicide. It’s a facet of the nation’s ongoing mental health crisis that is too often ignored. 

How to Help Patients Address Guilt

In terms of addressing the chronic pain itself, there may be very little that doctors, family members or co-workers can do for someone. It is often simply something they must learn to live with. But there is a lot that can be done to lessen the patient’s feelings of guilt from their condition.

To start with, care should be taken to provide validation and reassurance that the patient's chronic pain is real. Chronic pain sufferers need to feel listened to and understood if they're to have any chance of living well with their condition.

By integrating behavioral health treatment with pain treatment, physicians can have a clearer understanding of what a patient is going through and what treatments are working. Through gentle and skillful counseling, patients can also learn to connect their pain to their emotional difficulties and better address them without the guilt that comes from misguided statements implying “it’s all in your head.”

Using technology for remote monitoring can be of help with this, providing a better understanding of a patient’s physical and mental condition, and leading to more valuable insights and better long-term care.

A better public awareness of the social stigma that chronic pain sufferers must deal with would also go a long way in helping them deal with their condition. Family members, friends and co-workers can help in this by refraining from criticizing or stigmatizing those with chronic pain. Instead, make them feel understood, validated and respected. They have so much to deal with, and a few kind words and social support can go a long way in making things easier for them.

With better awareness and understanding may come new treatments for chronic pain. Pain medicine is still a relatively new field, and much work remains to be done on understanding the causes of it and how it can be treated. Until then, often the best that medical professionals and the general public can do is make chronic pain sufferers feel less stigmatized and more understood.

Joseph Cabaret, MD, is a pain and addiction medicine specialist at Wellbrain, a digital health platform for doctors. WellBrain's founding Stanford, Harvard and Mayo Clinic trained physicians designed WellBrain to help providers assess, engage and monitor their patients’ physical and mental health over time.

Dr. Cabaret’s private practice is located in Camarillo, CA, where he specializes in Interventional Pain Management, Regenerative Medicine, and Addiction Medicine.

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

How to Improve Pain Control with Adhesive Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

Some persons with Adhesive Arachnoiditis (AA) feel that more pain relief drugs, particularly opioids, will solve their problem. The fact is that we regularly review cases in which persons with AA are taking 2 or 3 opioids or even have an implanted intraspinal canal pump that contains fentanyl or Dilaudid, but they still don’t get enough pain relief to get out of bed and function.

AA is an intraspinal canal inflammatory disorder in which cauda equina nerve roots are glued by adhesions to the inside of the spinal canal covering. This definition tells it all. AA is fundamentally intraspinal canal inflammation, so unless the initial inflammation is suppressed or extinguished, it will likely continue to spread and cause more pain.

In essentially every case of failing pain control, we find that the person is doing little or nothing to suppress intraspinal canal inflammation and repair damage to their nerve roots and spinal canal covering.

First Steps in Pain Control

Our research is clear. A person with MRI-documented AA can’t expect adequate pain relief unless they have a definite, daily routine to simultaneously suppress intraspinal canal inflammation and repair tissue damage to cauda equina nerve roots and the spinal canal covering.

Adequate pain control to have a good quality of life can be difficult to achieve. The first step is to obtain a list of drugs, botanicals, hormones, nutrients and physical measures that are popular in the AA community and that either suppress inflammatory or restore damaged tissue. Share your list with your family and medical practitioner. You may have to try multiple agents to develop a program that gives you better pain control.

Persons who have AA and poor pain control also need a blood test for inflammatory markers, glucose, and the hormones cortisol, pregnenolone, DHEA and testosterone.

If your pain is constant, review our Intractable Pain Syndrome website that is totally dedicated to relief from constant pain.

How to Diagnose AA

I’m pleased to announce the release of a new handbook that takes the mystery out of diagnosing AA with contrast MRI imaging once and for all. I have read hundreds of contrast MRI’s during my years in medical practice, and have found that the earlier a diagnosis is made and treatment is started, the better the prognosis is for the patient.

Unfortunately, many health care practitioners don’t know the telltale signs of AA when it appears in an MRI. As a result, AA is often misdiagnosed as “Failed Back Syndrome” or “Low Back Pain.”

“Handbook to Recognize Adhesive Arachnoiditis” is an essential read for all practitioners who are interested in treating patients with spine disorders and patients who suspect they may have AA. It’s presented in a clear and easy to read format as a “how to” guide for reading contrast MRI’s for the diagnosis of AA.

The book is filled with clearly diagrammed MRI images of documented cases of AA and should help practitioners diagnose AA and learn the difference between AA and other spine disorders with similar symptoms.

This book will also help those patients who suspect they may have AA receive a quick and proper diagnosis, thus preventing delays in effective treatment of this devastating spinal cord disease. AA is no longer rare. It is in every community, and health care practitioners can now learn how to diagnose and treat it. There is hope and help!

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from a bulletin recently issued by the Arachnoiditis Research and Education Project. Readers interested in subscribing to the bulletins should send an email to tennantfoundation92@gmail.com.

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

No One Deserves to Suffer from Chronic Pain

By Victoria Reed, PNN Columnist

Recently I had a conversation with a family member who suffers from chronic pain. He said that he “deserves” the pain, because it resulted from certain actions and choices he made as a young person. He went on to say that my chronic pain isn’t “fair” because I did nothing to cause it.

I was astonished that he would actually feel that way. Does anyone really deserve to live a life with chronic pain? Surely, not!

He’s right in saying that I did not do anything to cause my pain. I just happen to have genetics that contribute to the development of certain illnesses, particularly the autoimmune kind. This runs strongly in my family. My sisters have multiple autoimmune illnesses, including rheumatoid arthritis (RA), lupus, type 1 diabetes and fibromyalgia. My mother suffered from untreated fibromyalgia as well. In addition, my daughter has been diagnosed with fibromyalgia.

Obviously, none of us did anything to cause our illnesses, nor the pain that comes from having them.

While this particular family member may have made some questionable choices as a teen that caused injuries and persistent pain well into adulthood, he doesn’t deserve chronic pain. It’s not uncommon for teen boys to engage in risky behavior, and I’ve told him that his pain is no less important and no more deserved than mine. 

While there can be many, many causes of chronic pain, compassion must be given to each and every patient, regardless of the cause. Life happens! Whether it’s the result of a genetic-based illness, an automobile crash or some other accident or injury, no one deserves to live in pain. Even if the incident that caused your pain was due to your own negligence or carelessness, it is still valid pain, and treatment is as justified as it is for any illness.   

RA Drug Shortage Continues 

On the flip side, I have been experiencing continued difficulty getting my RA medication. Actemra (tocilizumab) is a biologic drug that was created specifically to treat RA, and the IV form has been my mainstay treatment for many years. However, there is still a worldwide shortage of Actemra because it’s been repurposed to treat covid patients. According to a statement by Genentech, the drug’s manufacturer, there will most likely be continued shortages throughout the pandemic.  

At one point during the summer of 2021, Genentech reported a “temporary stockout” of Actemra IV in the U.S. because so much of it was being used for covid patients. During that time, I was forced to switch to a different form of treatment. But even after switching to a subcutaneous self-injection, whenever I attempted to refill my prescription, my pharmacy informed me that the medication is “long-term out of stock.”  

This formulation was not approved by the FDA’s Emergency Use Authorization to treat covid, but it appears that it is indeed being used for that purpose and is frequently unavailable to RA patients. To say that this is frustrating would be an understatement!  

While covid is no doubt a serious illness, untreated RA with its systemic inflammation is also very serious. This runaway inflammation can, and often does, do damage to the heart, lungs and eyes. Untreated and poorly treated RA is also associated with a 10 to 15 year decrease in life expectancy.   

It’s understandable why doctors are currently experimenting with older, established medications to treat covid.  Fortunately, researchers have discovered that some of these older medications have been helpful and do decrease the severity of the virus. However, existing users of any particular medication shouldn’t lose access or have their necessary prescriptions significantly delayed. RA patients are no less important than covid patients.  

Chronic illness is a common problem that affects millions of people worldwide. But depending on where you live and what your condition is, you may not receive the same level of treatment and may not be taken as seriously as you’d like. No longstanding pain should be ignored, as untreated and under-treated pain will undoubtedly lead to other problems, such as depression, anxiety and even suicide. The risk of suicide also increases when patients are forced to taper off of opioids.  

The one thing that we all have in common is that we are human beings, and no matter what the chronic pain condition is, everyone deserves to be treated humanely and compassionately, just as any animal in pain would be. Nobody ever “deserves” to suffer. 

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

A Gift to Be Revered

By Carol Levy, PNN Columnist

I was thinking, “It's Christmas time. I'm supposed to be happy.”

Instead, I am by myself in the parking lot, observing others walking with friends, enjoying each other, and the frivolity of the season. And I am jealous.

I hear the laughter as they walk past me, reveling in the joy of the holiday.  And I am jealous.

I feel the biting cold, as I watch them pull scarves tight around their necks, pulling them up over chins and around their ears. Others tugging on their hats to keep out the cold. And I am jealous.

This is my holiday, alone, unable to enjoy the cold and the fun of the season. My pain has left me mostly housebound. I rarely go out, not a conscious choice, but one the pain made for me. I don't want to go out when I am in pain. I don't want to go out when the pain is quiet because I don’t want to trigger it.

Alone in my house, there is no one to befriend me. I have no family, they abandoned me years ago. Despite all the brain surgeries for my trigeminal neuralgia, they still think I am lazy and a malingerer. Friends I had long ago moved, died or the relationships just ended, as often happens in the normal scheme of things.

My pain is in my face. It doesn't allow me to wear a hat or pull a scarf around my ears and face. Winter and Christmas add to the litany of so many other things the pain has stolen from me.

For many people, parties await and shopping expeditions abound, anticipating the great morning of everyone around a tree, opening gifts and squealing at the wonderfulness of what they received. But they are anathemas to us.

It is not that we hate the excitement, the time spent with others celebrating, the fun of seeing all the decorations and storefronts with their mystical, musical displays. It is that we hate the pain.

It is knowing that if we say yes to the offer of going to a party, walking around the stores or exploring the neighborhood, we are saying yes to the pain. We are agreeing to put ourselves in what, for us, is danger.

And that makes Christmas not so much fun. 

“Attention must be paid,” wrote Arthur Miller in “Death of a Salesman.”  Willy Loman, the main character, was just a regular person.

“Not the finest character that ever lived,” his wife says to his sons. “But he’s a human being, and a terrible thing is happening to him. So attention must be paid.”

We are human beings and pain is the terrible thing that has happened to us. And attention must be paid.

If there is no one else, I and the pain community hear each other. We pay attention. And that is a gift to be revered.

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 Complicated Chronic Pain is Different

By Dr. Forest Tennant and Ingrid Hollis

As 2021 comes to a close, we wish to summarize what we personally consider to be the greatest issue in pain management. Physicians have observed for centuries that some chronic pain conditions are not only more severe than others, but some cause excruciating, constant pain that casts the poor suffering individual into a humbled, bed-bound state.

Unfortunately, throughout the past half-century or so, many concerned parties, whether intentional or not, have tried to lump all pain patients into one category, saying they all have persistent or chronic pain. This has led to calls for “one size fits all” treatment and inflated statistical figures on the number of pain patients who need help (i.e., 50 or 100 million Americans).

The Real Issue

Chronic pain has traditionally been defined as pain that continues past the normal healing time for an injury or disease, which is about ninety days. There has been no generally accepted separate classification as to the severity, constancy or periodicity of pain that lasts longer than 90 days. Consequently, chronic pain surveys and statistics always include persons with the common, mild to moderate painful afflictions such as bunions, carpal tunnel, fibromyalgia, headaches, TMJ, irritable bowel, back strains, plantar fasciitis, and mild neuropathies and arthropathies.

Cries of undertreatment of these common chronic pain problems ring hollow, since every community has a plethora of medical practitioners, pharmacies, health food stores and fitness centers that tend to vast number of persons who have these common pain problems.

It may also be why all of the recent lobbying and advocating for “chronic pain” doesn’t seem to connect with the body politic, because the vast majority of chronic pain patients are getting adequate care. This is not to say that treatment for their common, mild to moderate conditions can’t be improved, or that their treatment isn’t needed.

The real issue, however, is that there is a sub-set of chronic pain patients who develop what can justifiably be called “complicated chronic pain.” Most have tried a plethora of treatment options but are left with severe, constant pain that has a specific set of pathologic complications. It is this group that is undertreated, poorly understood and needs advocacy, attention and treatment for their complicated chronic pain.

The Complications

The hallmark of complicated chronic pain is constant pain which is associated with cardiovascular, metabolic and hormonal abnormalities. Complications include hypertension, tachycardia, glucose elevations (pre-diabetes, and diabetes), and adrenal-gonadal hormone deficiencies including cortisol, estradiol and testosterone, among others. These complications can lead to heart attack, stroke, heart failure, autoimmunity, diabetes, obesity, depression, dementia and other health problems.

Thanks to modern research and science, we have a better understanding of why some unfortunate individuals transform from a mild, periodic chronic pain, to a constant, ferocious and disabling pain state. We now know that injured or diseased tissue from whatever initiating cause can generate bioelectricity that may enter the spinal cord and brain -- the central nervous system (CNS) – causing destructive inflammation that damages critical tissue sites that normally eliminate or control pain.

This development is called “neuroinflammation.” The transformation process in now often called “centralization” or “central sensitization.” Some pain specialists prefer to call complicated chronic pain “neuropathic pain.”

We Need a Name

A syndrome is a clinical state in which one pathologic defect causes multiple abnormalities and symptoms. Hence, we recently began calling the complicated chronic pain state the Intractable Pain Syndrome (IPS). The term intractable was first used by British physicians in the last century who championed treatment of severe incurable pain. The term intractable is now used in some laws and is in popular use in some pain circles.

There may be a better name than Intractable Pain Syndrome. Maybe we should just call it “Complicated Chronic Pain.” Regardless, understanding that inflammation can develop in the CNS and cause complicated constant pain is essential, as these patients need a different treatment approach from the more common, uncomplicated chronic pain patient.

Going forward into 2022, we define Intractable Pain Syndrome as “an inflammatory disorder of the central nervous system that causes constant severe pain and is associated with cardiovascular, metabolic and hormonal complications.”

Furthermore, we will advocate that this tragic syndrome be understood, and that its proper treatment demands not only symptomatic pain relief, but specific treatment of the disease that originated the syndrome, along with specific treatment of its complications. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on intractable pain and arachnoiditis. Ingrid Hollis chairs the editorial committee of the Tennant Foundation Research and Education Projects. She is also a family caregiver and advocate for those who suffer from rare diseases and intractable pain. The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.     

Spending Time in Nature Can Reduce Chronic Pain

By Gabriella Kelly-Davies, PNN Columnist

A few months ago, I took part in a panel discussion with three other women who live with migraine or chronic headaches. One speaker, Australian journalist Sarah Allely, described how immersing herself in nature helped to relieve her debilitating headaches, anxiety and depression after a mild traumatic brain injury. It also drastically improved her focus and concentration.

Sarah’s brain injury occurred in 2015, when a passing car knocked her off her bicycle. Afterwards, a headache erupted in the base of her skull whenever she tried to read, write, watch television, or listen to music. She also struggled to concentrate and couldn’t work as a journalist for eight months.

Noisy environments such as bars, cafes and social gatherings that for years had energized Sarah, became unbearable. Despairing, she asked her medical team for advice. Her doctors admitted there wasn’t much they could do and suggested she learn to accept the situation. Sarah’s spirit sank as she contemplated a bleak future without all the things that had previously given her purpose and pleasure.

But that all changed when her friends invited her on a bush walk.

While trekking through the bush, Sarah’s headache lifted. So did her anxiety and depression. She wondered whether it was a fluke or if spending time in nature had reduced her symptoms.

During the following weeks, Sarah visited local bushland whenever possible. To her surprise, every time she did this, her headache, anxiety and depression eased. Intrigued, she wondered whether going to a local park or sitting in her garden would have a similar effect. She tried it. To her amazement, it worked!

A while later she stumbled across some magazine articles about research around the healing powers of nature. Curious about why her symptoms eased whenever she spent time in nature, Sarah decided to make an audio documentary. She wanted to understand the science behind her experience and the “optimum dose of nature” to relieve her physical and emotional pain.

During her research, Sarah came across several American scientists who were studying the science underpinning the healing effects of nature. Excited, she interviewed them, turning the conversations into six episodes of a podcast series she named Brain on Nature.

In the free podcast, Sarah shares her experiences discovering the healing powers of the natural world. Each episode follows her quest to discover why the natural environment changed her brain, helping her recover from a brain injury.

Seeking Connections With Nature

The scientists Sarah interviewed told her they were asking the same questions as her. Their studies found spending time in nature improved psychological and physical health, but they couldn’t pinpoint the precise reason for this response. Still, they were confident certain theories did help explain what was happening.

One of these theories is called biophilia, a belief that humans have an innate tendency to seek connections with nature. But for many of us living in bustling urban settings, constant traffic noise, bright lights, sirens, flashing billboards and yelling are the norm, and connecting with nature is a dream rather than a reality.

Instead of relaxing or exercising in a natural environment, we multitask, work on computers, talk on mobile phones, scroll through social media and send text messages. Living this way increases our stress levels, and for people with chronic pain, this can mean more pain.

But there is good news. Several studies show that when people turn off their electronic devices and sit in a quiet garden or stroll in a park, they feel refreshed and relaxed.

Pain specialists know that when a person living with chronic pain is calm, the volume of pain signals racing through their nervous systems is less than when they are anxious, angry or upset. So it makes sense that pain could reduce after spending time in a relaxing environment such as a garden or park.

Another possible explanation for Sarah’s experiences comes from Rachel and Stephen Kaplan’s Attention Restoration Theory. The Kaplans propose that exposure to nature is not only enjoyable but also relaxing and revitalizing. In Sarah’s case, whenever she spends time in the mountains on a weekend, she remains headache-free the following week. Her focus and concentration are also better. 

Fortunately, benefiting from the healing effects of nature is not about climbing Mount Everest or going on three-day treks in the forest. It can be a 10-minute walk in a local park or sitting in the garden smelling the flowers.

Once she understood the natural world was helping her injured brain to recover, Sarah felt compelled to share her learnings with others whose health might benefit from a dose of nature.  

“No one in the medical world suggested immersing myself in nature could reduce my symptoms,” she says. “But it works. I want others to know about it so they can try it for themselves.”

Hundreds of thousands of people around the world have listened to Brain on Nature and Sarah says their response is overwhelmingly positive.

“Two years after launching Brain on Nature, I’m still getting emails every week from people who say their life changed after listening to the podcast,” Sarah says. “I’m delighted it continues to have a positive impact and my search for answers has helped so many people.”

Sarah accepts some people might be skeptical about her belief in the natural world’s healing effects, especially if they have lived with chronic pain for several years and nothing has helped. She understands this response, but encourages anyone in pain to try a dose of nature for themselves to see if it eases their pain or improves their mood.

“When your pain is bad or you’re feeling grumpy, anxious or depressed, take yourself for a walk in the garden or a park,” Sarah suggests. “Put your phone on flight mode and see how you feel when you come back. Do you feel different? I challenge you to say spending time in nature doesn’t make any difference. So far I haven’t met anyone who can say that.”

While immersing ourselves in nature might not be a cure for chronic pain, it’s a powerful option in our pain management toolbox. Since learning about this approach, I now turn off my phone whenever we go for our morning stroll. Instead of feeling harassed by too many phone calls and text messages during our walk, I now feel relaxed and centered. And when I’m calm, I have less pain. I hope you do too.

Gabriella Kelly-Davies lives with chronic migraine.  She recently authored “Breaking Through the Pain Barrier,” a biography of Australian pain specialist Dr. Michael Cousins. Gabriella is President of Life Stories Australia Association and founder of Share your life story.

Gabapentin Is Not a Good Substitute for Rx Opioids

By Crystal Lindell, PNN Columnist 

Gabapentin (Neurontin) is not a good medication for pain relief. If it was, everyone in pain would just take it. 

A lot of doctors seem to think it is a direct substitute for opioids though. And it’s leading to a lot of suffering. 

A doctor first gave me gabapentin back in 2012. That’s when I started having debilitating pain around my right ribs. I didn’t know it yet, but it was the kind of pain that would never go away.

At the time, I was extremely uninformed on how I’d be treated as a patient with no known cause for my pain. I assumed that because I could point to exactly where the pain was coming from that the doctors would be able to figure out the cause and then fix it. That’s what always happened on House, ER, Scrubs, Grey’s Anatomy, and General Hospital.

When that didn’t happen, I still assumed my doctor would believe me. That, while I sat there crying in his office, confessing my plan to kill myself to escape the pain, at the very least he would give me the most effective medication he knew of for treating the pain. 

I was wrong on all accounts.  

While my doctor pretended he was giving me the most effective medication he knew of, he instead handed me a prescription for gabapentin. 

And I took it. Exactly as prescribed. 

He never went over side effects with me, and the list on the pharmacy pamphlet was so long that I assumed most of them were rare. So when I started gaining weight, I blamed it on being home and in pain all the time.  

When gabapentin didn’t help with the pain, I went back to my doctor and told him as much. He increased the dose, while assuring me that that was all that was needed. 

Wash, rinse, repeat, until I was on the highest allowable dose. Still with no relief. 

And to be clear, the pain was awful. It was worse than whatever you just thought of. And it was constant. That’s the killer. It never let up. I never got a break. I’d go days without even minutes of sleep because the pain kept me awake. 

The pain was so bad that suicide became a logical treatment option. What’s the point in living a life with no quality in it?

I started showing up at my doctor’s office when they opened, in tears after being awake all night in excruciating pain, asking for help. Still giving my doctor 100 percent of my trust. Still assuming he had my best interest in mind.  

I remember sitting on the exam table, wanting to die, while my friend who had driven me to his office at 7 a.m. held my hand. I begged my doctor for help. And he said, “Well what do you want me to do? I can’t up your gabapentin prescription any more. You’re on the max dose.” And then he sent me home. 

I didn’t even know enough about pain management at that point to want opioids, much less to know they were being denied to me. I didn’t know the doctors were prescribing a seizure medication because of opioid phobia. 

Not long after that, my doctor would break up with me. Or, well, whatever you call it when a doctor says he will no longer treat you and then follows it up with, “So don’t come in anymore.”

He literally gave up. And I would have too, if my pain had gone on much longer. 

‘Opioids Saved My Life’

Eventually, I found a new doctor at a university hospital. He believed me. He prescribed me enough opioids to function. And that’s literally the reason I’m still here. 

Opioids saved my life. In many ways, gabapentin almost took it. 

But it also did something else. It destroyed my trust in doctors and medical professionals. If they could look me in the eye while handing me a prescription they knew wouldn’t help me, what else could they lie about? What else were they hiding from me?

Back then, prescribing gabapentin in place of opioids was a relatively new practice. After that experience, I had hoped it would go away. Instead, it gained traction. 

According to data from IQVIA, gabapentin was prescribed over 33 million times in the U.S. in 2011, which is about the time opioid prescriptions peaked. By 2018, the number of prescriptions for gabapentin had increased to over 67 million. 

Anecdotally, a lot of people I know with various pain ailments have been offered gabapentin in place of opioids by their doctors as recently as this year.

Since I’m so open when discussing my health issues, it’s common for people I know to ask what my experience was like on various medications. I never know what to tell them when they ask about gabapentin. I’m too worried about being wrong to warn them off of it completely. After all, what if it helps them? I don’t want to keep them from anything that might relieve their pain.

Doctors don’t seem to grapple with this though. For them, addressing patient pain has moved over into optional, right alongside unnecessary cosmetic surgery.

They are literally doing harm. And the practice of giving unproven medication out for pain continues.

Here’s a 2019 article by The New York Times detailing this problem, and the lack of evidence supporting the use of gabapentin for pain.

“One of the most widely prescribed prescription drugs, gabapentin, is being taken by millions of patients despite little or no evidence that it can relieve their pain,” wrote columnist Jane Brody.

In other words, it’s been two years since The New York Times made this clear, but doctors are still prescribing it for pain.

That article misses one key point though. Brody says there are non-gabapentin alternatives to opioids that help pain, but then goes on to list “physical therapy, cognitive behavioral therapy, hypnosis and mindfulness training.”

As a pain patient, I’m here to tell you that none of those are real alternatives to opioids either. While they can all be helpful tools, they can’t replace opioids for real pain relief.

Which brings us to the problem. Our society, with guidance from the CDC, decided to take away everyone’s opioids – without having a real plan to replace them. Because there are no alternatives as good as opioid pain medication.

The general public might worry about their pain treatment if the CDC admitted that. So instead, we are sold a lie about gabapentin. We are told it is just as effective as hydrocodone for all sorts of pain, and that anyone who insists on opioids is just looking to get high.

No matter how much people use gabapentin, physical therapy and mindfulness to treat pain, they just don’t work the way opioids do.

Opioid-phobia is a big messy topic, and doctors replacing opioids with gabapentin are just one small part of that story. But for people who are suffering because of their doctor’s overreliance on gabapentin, it often feels like the most important part. 

There’s such an easy answer to this problem too: Just give people opioid medication. When used responsibly, it’s incredibly safe, cheap, and best of all, it actually works.

Crystal Lindell is a journalist who lives in Illinois.  After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome.