Is Recreational Drug Use a Human Right?

By Roger Chriss, PNN Columnist

The book “Drug Use for Grown-Ups” by Carl Hart, PhD, is garnering a lot of attention. Hart argues that recreational drug use is a fundamental human right, while also describing the harms of drug laws and policy on people of color. His book is a mixture of anecdote and analysis that raises a lot of important issues about drugs and society.

Hart is unapologetic about his own drug use and that of others, saying that "Adults should be permitted the legal right to sell, purchase, and use recreational drugs of their choice." He sees drug use as “beneficial for human health and functioning” and causing ‘little or no harm” in most instances.

Specifically, Hart states that drug use is an "act that the government is obliged to safeguard” because it is a part of the “pursuit of happiness” in the Declaration of Independence. He claims that Thomas Jefferson, one of the authors of the Declaration, was “a long-term avid drug user.”

Hart, who is a psychology professor at Columbia University, raises numerous questions in a blunt and sometimes brusque fashion, asking “Why is it that guns can be legally purchased but heroin cannot?”

He challenges his readers with remarks like: “Few would balk at using Viagra or Cialis to enhance sexual performance, but many more find it objectionable to use drugs such as amphetamines to improve the sexual experience.”

Hart doesn't mythologize or romanticize drugs or their users, and questions why advocates of the psychedelic movement call themselves “psychonauts.”

“The term psychonaut in itself is another attempt to dissociate middle-class psychedelic users from users of drugs such as crack and heroin, who are disapprovingly called ‘crackheads’ or ‘dope fiends’.”

Hart defends this position by pointing out that nearly 80 percent of illicit drug users don’t have problems such as addiction. He explains that his own heroin use is rational: “Like vacation, sex, and the arts, heroin is one of the tools that I use to maintain my work-life balance.”

As for overdose deaths, Hart contends that contaminated drugs are the issue. “A regulated market, with uniform quality standards, would virtually put an end to contaminated drug consumption and greatly reduce fatal, accidental overdoses,” he writes.

Further, Hart states that drug addiction is not a brain disease, writing that there is no evidence indicating that “responsible recreational drug use” causes brain abnormalities. He says obsessing over addiction has caused harm by stigmatizing drug users as unworthy of social support or rehabilitative care. Hart sees the opioid crisis as overblown and rooted in racism.

“All the evidence from research clearly shows that most heroin users are people who use the drug without problems, such as addiction; they are conscientious and upstanding citizens,” he writes. “The new ‘get tough on opioids’ policies have been fueled by the mistaken perception that most illegal opioid dealers are black or Latino.”

Legalization, Hart claims, is the key to changing all this. Prohibition of alcohol gave birth to criminal gangs and a thriving underground market in booze, some of it so contaminated with impurities it made people sick or even killed them. “This problem went away when Prohibition was repealed,” he points out.

But not all of this holds up so well. Hart argues that a legalized market with regulated substances would keep people safe, but he himself chooses to use an illicit substance called “hex” of unknown provenance and effect while at a drug festival.

“I now include hex among the drugs I might want to take immediately before attending some awful required social event, such as an academic reception or an annual departmental holiday party,” he wrote.

Hart’s book is also notable for what it lacks. He doesn’t look at public health data or long-term studies on drug risks and user outcomes in the U.S. or other countries, and ignores animal research on drug risks and harms.

Hart also omits recent discouraging research on drug legalization and social justice. According to the University of Washington’s Alcohol & Drug Abuse Institute, legalization of cannabis has had no impact on reducing racial bias in policing and other disparities in the criminal justice system.   

He also doesn’t discuss the under-treatment of pain in people of color due to myths about higher pain tolerance, lack of nerve endings, or greater abuse and addiction risk.

Hart clearly shows the harms of current drug policy, but arguably overstates the potential benefits of legalization. And his blunt style sometimes diminishes his own credibility.  Overall, the book “Drug Use for Grown-Ups” adds to the discussion of drug policy in the U.S. by asking some challenging questions, but doesn’t resolve many important issues.

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.

“Drug Use for Grown-Ups” is featured in PNN’s Suggested Reading section, along with other books on pain treatment and drug policy.

It’s Time for People in Pain To Be Heard

By Carol Levy, PNN Columnist

I just had my second “there's an issue with filling your codeine prescription” incident.

I have been on codeine, on and off, for over 30 years. Initially, I was allowed refills. When that was no longer permitted, my doctor gave me a new prescription, each and every month, for 120 pills.

When my trigeminal neuralgia pain became somewhat better as a result of various surgeries, I often took only 1 or 2 pills per day.

I am now about 90% housebound. Part of it is due to Covid, but mostly it’s because I do not want to go out and make the baseline pain worse. As a result, some days I take no codeine at all. My last prescription was for 120 pills. It was a month’s supply that lasted for 9 months.

The first incident was last year, when my pain management doctor decided, without discussing it with me, that he was no longer writing scripts for 120 codeine pills a month. Instead, he changed it to 10 pills a month.

I was told he didn’t like me having extra pills, a nonsensical excuse as I had no history of giving them away or taking too many. Prescriptions for 120 pills just made it easier for everyone, including the insurance company, since they would be paying less for fewer doctor appointments.

Fortunately, I was able to go to my family doctor, who had no problem writing for 120 pills. They trusted me there, knowing I would not abuse them.

But when I took the script to the pharmacy, I was told, “We can only fill a 7-day supply per your insurance company.”

The worst part about that was not that I would have to repeatedly go back to the pharmacy, but that the cost for each 7-day supply was much more for me out-of-pocket than if they just filled the whole prescription at once.

My Physician Assistant called the insurance company to ask for a pre-authorization. This would allow the pharmacy to fill the entire amount at one time. They immediately allowed it for the next 12 months, which seemed odd.

If they think I should only be getting a 7-day supply, then why allow the whole script to be filled for an entire year? Either I am untrustworthy or I'm not.

I am lucky. I don’t rely on daily opioids to get me out of bed, go to the store or be able to work. So many of us have no other option but to take them. My annoyance is tame compared to what other patients go through, who have been unable to get what they need due to restrictions on prescribing.

Physicians for Responsible Opioid Prescribing (PROP) recently sent a letter to the AMA saying the organization shouldn’t be calling for changes in the CDC opioid guideline, even though far more people are dying from street drugs than prescription opioids.

“Medically prescribed opioids remain a common gateway to illicit opioid use and are themselves frequent causes of opioid addiction and overdose, even if illicit opioids currently cause the greater number of deaths,” PROP said.

PROP founder Dr. Andrew Kolodny even said that prescriptions “still have a very long way to go” and should be reduced even further.

PROP’s reach is loud and strong. We complain so much to each other, patient support groups, Twitter and other social media about how awful this is, how unfair and inhumane.

A number of people have started online petitions to send to the FDA or CDC, asking that the guidelines be changed so they stop hurting chronic pain patients. Many say, “This is a great idea.” Yet few actually sign.

Nothing will change if we don’t band together and make our voices heard. The call keeps going out, “Something must be done!” But too often the answer is, “Oh yes, somebody must do something. But I'm too busy.”

Whispering in the wind won’t help. It is long past time for us to become a true force, with a voice that is louder and stronger than PROP’s. 

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.

What COVID-19 Teaches Us About Rare Diseases

By Roger Chriss, PNN Columnist

Sunday, February 28th is Rare Disease Day -- a day created to recognize and increase awareness of rare diseases that affect millions of people worldwide. This year that includes the effects of Covid-19 on the rare disease community.

The National Organization of Rare Disorders reports that there are over 7,000 rare diseases. A disease is considered rare in the U.S. if it affects fewer than 200,000 people; while in Europe a disease is classified as rare if it affects fewer than 1 in 2,000 people. Although each disease is rare, there are so many conditions that roughly 1 in 17 people are affected by a rare disease.

Rare Disease Day 2021 is occurring amid a pandemic. Covid-19 has increased awareness of medical problems like anosmia, a loss of sense of smell. In it congenital form, anosmia affects only 1 in 10,000 people, but now it is seen in millions infected with the coronavirus. For most, the loss of smell is temporary, but for some Covid patients it persists long after the initial infection.

“One might think that it is not important to be able to smell nature, trees, forests,” Evan Cesa told AP News. “But when you lose the sense of smell, you realize how truly lucky we are to be able to smell these things.”

Long Haul Covid

In a recent study, University of Washington researchers monitored 300 recovering Covid patients in the Seattle area and found that 30% reported worse health and quality of life in the wake of the illness. Some were unable to perform simple chores, lift heavy objects or walk for more than a short distance.

Chronic Covid syndrome (CSS), also known as long-haul Covid, seems to occur in about 10% of infected people. In addition to loss of smell, long haulers often have disabling fatigue, headache, shortness of breath, weakness and brain fog – symptoms that are strikingly similar to chronic fatigue syndrome (CFS/ME).

Research on how to manage long-haul Covid is looking at treatments already used for rare disorders. A clinical trial of low-dose naltrexone (LDN) is underway. LDN is sometimes used to treat refractory chronic pain conditions, and is being explored for lupus and obsessive-compulsive disorder.

The pandemic has created new challenges for the rare disease community. Accessing medical care amid a pandemic has been tricky, in particular for people whose immune function is compromised. And the handful of deaths associated with Covid vaccines has raised questions for people with severe thrombocytopenia (ITP), a rare platelet disorder.

Covid-19 is revealing what living with a rare disease is like. Some people with long-haul Covid are reluctant to disclose their condition, much as people with rare disorders often struggle with when and how to share information about their diagnoses.  

People with long haul Covid are struggling to gain recognition for their disability. As NPR reports, long haulers have asked the federal government for disability coverage, rights and protections -- but it's unclear if they qualify under the Americans with Disability Act.

While Covid-19 has increased awareness of rare diseases, it’s also slowing rare disease research and complicating care. This year, many Rare Disease Day events are being held online due to the pandemic.

Hopefully, Rare Disease Day in 2022 will take place in a post-Covid world.

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.

Would Drug Legalization Reduce Overdoses?

By Roger Chriss, PNN Columnist

As the overdose crisis worsens, public health data and biostatistics become more important. Debates about opioid prescribing and drug legalization often center on two key concepts: incidence and prevalence as applied to drug use, substance use disorder (SUD) and overdoses.

Brandeis University researcher Andrew Kolodny, MD, recently argued against drug legalization on Twitter.

“Some critics of reducing Rx opioids don't believe that repeated use of highly addictive drugs cause addiction and/or they believe all drugs, including heroin & cocaine should be available over the counter. They don't believe that easy access can increase prevalence of SUD,” said Kolodny, who founded Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group.

Conversely, Columbia University professor Carl Hart, the author of “Drug Use for Grown-Ups,” believes legalizing recreational drugs would help reduce overdoses by making the drug supply safer.

“A large proportion of these deaths are caused by adulterated substances purchased on the illicit market. A regulated market, with uniform quality standards, would virtually put an end to contaminated drug consumption and greatly reduce fatal accidental drug overdoses,” Hart told Columbia Magazine.

Both claims hinge on a proper understanding of incidence and prevalence. In epidemiology, incidence is the rate of new-onset diagnosis of a medical condition. It is measured over a given period of time -- typically a year -- though sometimes the time period is shortened to a week for an urgent problem, such as a viral pathogen like the coronavirus.

By contrast, prevalence measures the total number of people in a population who have a specific medical condition. For prevalence, the duration of the condition is important. For an infectious disease, it may be brief. But for cancer, SUD and many other chronic conditions, it may last a lifetime.

For instance, the incidence of opioid use disorder (OUD) among people who are on long-term opioid therapy is 8-12%, according to the National Institutes of Health. But unlike claims frequently made by PROP, only a small fraction of patients who abuse prescription opioids start using heroin, less than 4% over a five-year period. So, making a clear distinction between OUD involving prescription opioids versus heroin becomes important.

The prevalence of OUD is a cumulative total of all people with OUD over time. This is because OUD and other substance use disorder diagnoses are lifetime diagnoses that remain on a person’s medical records forever. When we count people with OUD, we are counting everyone ever diagnosed with the condition, though in practice sometimes the OUD diagnosis is dropped due to administrative error, poor record-keeping or deliberate obfuscation.

This means that OUD prevalence can go up over time even when the incidence of OUD is going down. In fact, that is what is happening at present.

A recent report from the Substance Abuse and Mental Health Services Association showed modest declines for both prescription opioid misuse and heroin use. This came at a time when U.S. drug deaths were rising, fueled primarily by overdoses involving illicit fentanyl.

OUD+trends.jpg

These counterintuitive trends make for intense debate about the success or failure of the 2016 CDC opioid guideline and state laws restricting prescription opioid use. A recent study from Indiana University concluded that limits on legal opioid prescribing may have actually driven more people to illicit drugs.

"Our work reveals the unintended and negative consequences of policies designed to reduce the supply of opioids in the population for overdose. We believe that policy goals should be shifted from easy solutions such as dose reduction to more difficult fundamental ones, focusing on improving social conditions that create demand for opioids and other illicit drugs," said co-author Brea Perry, PhD, a professor of sociology at Indiana University.

Even if drug legalization were to reduce drug risks, an increase in the number of drug users could lead to more harms. For instance, if an illicit drug harms 10% of users and there are 1 million users, that results in 100,000 people harmed. If that drug is then legalized and made safer, harming only 1% of users, that seems like an improvement. But if the number of users rises to 15 million, then 150,000 people would be harmed.

Since we don’t know how these numbers would change under a legalized drug regime, any claims about changes in incidence or prevalence are speculative at best.

What is counted and how it is expressed are very important in debates about the role of prescription opioids or drugs in general in SUD and overdose deaths. A failure to be specific about methodology or using data that is not well-founded can result in specious or even deceptive claims. And counterintuitive results are possible, as we are seeing at present in the ever-evolving overdose crisis.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

A Flawed Person's Drug Problem Isn't a Moral Failing

By Dr. Lynn Webster, PNN Columnist

Rush Limbaugh was as controversial as he was politically influential. In fact, Nicole Hemmer, a research scholar at Columbia University, called Limbaugh "the man who created Donald Trump" and opined that Limbaugh created the political foundation that catapulted Trump to power.

In 2020, President Trump returned the favor by awarding Limbaugh the Medal of Freedom, our highest civilian honor, for his "decades of tireless devotion to our country."

But the Independent points out that Limbaugh also left behind a legacy of "divisiveness, cruelty, racism, homophobia, bigotry, and sexism." And Rolling Stone said the radio host "trafficked in bigotry and cruelty."

RUSH LIMBAUGH

RUSH LIMBAUGH

It's hard to argue with either of those statements. To me, Limbaugh was a deeply flawed human being who caused harm. But some statements about him go too far.

When Limbaugh died this week after a lengthy battle with lung cancer, Mark Frauenfelder, editor of The Magnet, tweeted: "Rush Limbaugh, the sex tourist and drug addict whose four marriages, mockery of people after their deaths, and overt racism and misogyny made him a beloved icon of American conservatism, is dead at 70." 

That statement is troubling. Overt racism and misogyny are character flaws. Drug addiction, however, is not. It's unfortunate to see Limbaugh's detractors point to his well-documented problems with painkillers as moral failings. This supports my firm belief that our culture holds deeply negative views of people with addiction.  

History of Back Pain and Drug Use 

Limbaugh began abusing prescription painkillers after his spinal surgery in the 1990s. He was eventually arrested on drug charges — specifically, charges of fraud to conceal information to obtain prescriptions, also known as "doctor shopping." In exchange for having the charges dropped, Limbaugh agreed to undergo drug treatment and pay $30,000 in court costs. He posted $3,000 bail and was released.

I wrote about Limbaugh's prescription drug problem in my book, "Avoiding Opioid Abuse While Managing Pain." What we knew about Limbaugh's problem, as I said at the time, was that he abused large quantities of prescription opioids for several years; kept his abuse secret from family, friends and colleagues; entered a rehabilitation program twice, but relapsed each time; remained successful without a visible reduction in functioning while he used drugs; and was suspected of buying drugs illegally. 

What we didn't know, and perhaps now can never ascertain, is whether Limbaugh had an addiction or an undiagnosed psychiatric disorder (although some may argue his professional conduct was evidence of a disturbed personality). We also can't know whether his main motivation for using drugs was to control physical pain, to mask emotional pain or stress, to seek a "high," or some combination of those reasons.  

The answers to these questions — about his history of drug abuse, mental health and motivation — would have told us whether his opioid use disorder (OUD) was treatable with better pain control or, tragically, was an incurable disease.  

Limbaugh exemplifies the type of patient most physicians face when treating serious pain conditions. Sometimes, opioids fail to provide adequate relief for them. And, increasingly, patients cannot access the opioids they need due to misguided polices and regulations.   

How Society Views Addiction 

Some people may agree with Limbaugh's political and social views, and others may not. But conflating his drug abuse and associated illegal activities with the opinions he expressed about social issues harms people who suffer from the disease of addiction. It also makes it more difficult for people with severe pain to receive the care they deserve, whether their abuse is caused by addiction or, as is often the case, a symptom of undertreated pain. 

Many of those with addiction may not have the power or influence to bail themselves out of prison or pay tens of thousands of dollars in court costs. They may remain in prison for years and suffer the loss of their careers, reputations, homes and even their families.  

Generally, our society views people with addiction as flawed, weak and hopeless. We distance ourselves from those who have the disease, and we allow the criminal justice system to have jurisdiction over them, making it difficult or even impossible for them to receive treatment.  

We may never know why Rush Limbaugh made the choices he did. But, just as we would never think of berating him for falling victim to lung cancer, we also shouldn't chastise him for misusing painkillers. We may have a right to judge Limbaugh's behavior, but we cannot, in decency, judge his disease. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find Lynn on Twitter: @LynnRWebsterMD.

Finding Love Again While Living With Chronic Pain

By Crystal Lindell, PNN Columnist 

When you have chronic pain, love stories can be triggering.  

For a while, I had to Facebook mute everyone on my friend’s list who posted about their relationships. I hated them so much for being happy. And I hated myself for hating them. 

My last boyfriend and I started dating before I had debilitating chronic pain. As my health declined, so did our relationship.  

I knew it was the beginning of the end when he finally said the unsayable out loud to me on the phone.  

“Look. I just don’t want to have to take care of you for the rest of your life.” 

The words struck me like a punch in the eyes. I honestly hadn’t seen it coming. Worst still, we dated for three more months because I didn’t have the strength to leave him.  

Those words left sprawling scars. And in 2017, when I started to suspect that I might have Ehlers-Danlos Syndrome — a painful genetic condition that has no cure — I burned them into my brain like a prophecy. 

The idea of never getting better was now knotted up with the idea that no man would ever love me. Somehow, I convinced myself that I deserved such a fate.  

I mean, I can’t expect a guy to take care of me for THE REST OF HIS LIFE. It’s rude. It’s cruel. Men deserve more from their lives than my doctors’ appointments, ER trips and medical debt. My ex was right.  

I resigned myself to a lifetime of horrible Tinder dates and one-night stands. After all, what right did I have to expect anything more than that?  

Ok, yes, this is the part where I’m going to tell you I met the love of my life. I know. Gross. 

If you want to stop reading now because you hate love, I completely understand. But I want to tell you something real quick before you go — it is possible to find love when you have chronic pain.  

I found him. He found me.  

We found each other.  

We met at a local political meeting. I went up to a local candidate to ask about opioid access for pain patients, he overheard me and asked for my number.  

Hydrocodone literally brought us together.

Yes, we both have chronic pain. I think that’s the secret. 

People will tell you that two sick people shouldn’t date, but in my experience, it makes for a much better match than one sick person and one healthy person.  

There’s a uniquely humbling empathy you develop when your body falls apart. It’s the kind of empathy that only comes when you lose your childhood sense of invulnerability.  

The truth of it is, like most stories involving real people, our fairy tale wasn’t a straight line.  

While he asked for my number in August of 2017, we went on one date and then mostly lost track of each other. Other than some social media comments and a couple run-ins at local political events, I didn’t really hear from him again until March 2018. 

That’s when he sent me a Facebook message. “Hey, are you going to that debate at the library tonight?” 

He sent it on March 15, 2018. I read it right after I got home from the doctor. The same day that I was officially diagnosed with Ehlers-Danlos Syndrome.  

I went to the debate. He did too. 

The next day he sent me a text, “Apologies if this is a bit direct, but you’d been saying that you felt run-down and sick last time I saw you. But you looked freaking great yesterday.” 

A couple days later he took me to a movie. It was well past midnight as we left the theater, so he suggested a little gyro stand known for its authentic food and 2 a.m. closing time. 

As we sat in the car, getting Tzatziki sauce all over our faces, I told him the story of my ex. How he had hated my health issues. How he had told me he didn’t want to have to take care of me for the rest of my life. How much those words screwed with my head. 

About a week later he came over with a Blu-ray copy of “Thor: Ragnarok,” ended up spending the night and we never looked back. Other than work trips we haven’t spent a night apart since.  

Almost three years later, we now share heated blankets, coordinate doctor appointments and deal with weather-induced pain flares together on the couch. 

He proposed recently. On Christmas morning. he put a ruby ring under the tree and then made sure I opened it last.  

As I unwrapped the large box meant to disguise the ring’s shape, he leaned over to give me a kiss, completely oblivious to my unwashed hair and lack of makeup. 

Then, he went silent.  

“Um, are you proposing?” I asked when I saw the ring.  

“Yes,” he said.  

“So, like, you’re cool with spending the rest of your life with me?” I asked.  

“Well, I was going to do that either way,” he said.  

A proposal. At home. In my pajamas. With nobody else around.  

Only a fellow chronic pain patient could understand the magic in that.  

“I do have one more question,” he said.  

“What?” 

“Are you sure you’re never going to get better? Because I don’t want to have to take care of you for the rest of your life,” he said.  

Then he burst out laughing, so proud of his joke.  

Well look at that. Those words have been reclaimed. Our love took them back.  

They don’t control me anymore. Now, they belong to me and my fiancé. 

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.

New Society Launched to Advance Pain Research

By Gregory Carbonetti, Guest Columnist

“I live with layers of chronic pain,” writes Dr. Richard Hovey, a professor of dentistry at McGill University. Diagnosed with psoriatic arthritis and enduring lower back pain from a bicycling accident, Hovey also faces painful chemotherapy for advanced metastasized prostate cancer.

“The combination of these pain-inducing events presented significant life-changing challenges to retaining my sense of personhood,” Hovey wrote in a personal essay in the Journal of Patient Experience.

Many Americans may relate. Chronic pain is more prevalent in the U.S. than diabetes, coronary heart disease, stroke and cancer combined. It costs our economy some $635 billion a year in direct treatments and lost productivity.

These problems are exacerbated by the ongoing opioid epidemic, which claimed approximately 450,000 lives over the last two decades and stigmatized people who take prescription pain medication. The nation, and the world, lacks efficient and safe pharmaceutical treatments for pain.  

Thus, one might think a scientific and professional society comprising scientists, clinicians, healthcare providers and policymakers exists, working to reduce the burden of pain. There was such a group, the American Pain Society, but it filed for bankruptcy in 2019. This absence was rectified only this past December with the inaugural meeting of the United States Association for the Study of Pain (USASP).

The circumstances leading to the formation of this new organization underlie the importance of pain research in the United States, which scientific societies play a fundamental role in. They foster interdisciplinary collaboration among members; attract young investigators through early-career grants; work to increase policy impact and address social issues; and promote members’ personal and research integrity.

Scientific societies bring together diverse perspectives and translate knowledge into directives for action. The death of the old pain society and the birth of a new one illustrates the importance of transparency for societies of every discipline.

The now-defunct American Pain Society did some good work. It provided clinical guidelines for pain treatments, increased funding for research, and advocated for multidisciplinary care. But it became a victim of toxic philanthropy, tarnished by its connection to opioid manufacturers such as Purdue Pharma, which settled criminal and civil charges last year by agreeing to pay $8.3 billion for its role in the opioid crisis.

Purdue and other opioid manufacturers accounted for nearly $1 million of the American Pain Society’s $6.5 million in contributions between 2012 and 2017, according to a U.S. Senate committee report, and covered over 5% of the society’s expenses during those years.  

The American Pain Society wasn’t the only professional society accepting donations from opioid manufacturers. The Academy of Integrative Pain Management, which accepted approximately $1.3 million between 2012 and 2017, also dissolved in 2019 due to financial problems. While its focus was different, both societies shared members, and its loss was another setback.

For many pain researchers, clinicians and advocates, the American Pain Society’s demise meant losing important support for their work. These professionals soon had difficulty meeting with pain management leaders and experts in other sub-specialties and disciplines.

More Transparency Needed

Many members were stunned by what had transpired, unaware of the American Pain Society’s dependence on opioid manufacturers. According to the Pacific Standard, when the society’s contributions from opioid manufacturers began to dwindle, leaders never directly told members that fewer industry donations were contributing to their financial problems. 

The dissolution of the American Pain Society created a vacuum, and strategies to organize the USASP began. Forming the new society included a GoFundMe campaign to purchase the old society’s Journal of Pain through auction.

While membership in the USASP is similar to the American Pain Society, its leaders stress that they have learned valuable lessons, making the new constitution and expectations of leadership more transparent and talking with members about the role industry will hold. The USASP is committed to “values-based” decision-making.  

Creating a new society will not instantly end either the chronic pain crisis or the opioid crisis. Nor will it absolve certain players of their past errors. Nonetheless, this history should push other scientific societies to strive toward full transparency and remain in service to those they seek to help.

Dr. Hovey wrote of the transformation “that occurs as patients become people again and are awakened by the multitude of challenges that [lie] ahead of them.”

The formation of the United States Association for the Study of Pain is a significant moment for chronic pain research and for sufferers like Dr. Hovey. The work of rebuilding vital infrastructure for understanding and managing chronic pain, the invisible epidemic, begins anew.

Gregory Carbonetti, PhD, is a Civic Science Fellow at the Alan Alda Center for Communicating Science, working to more meaningfully connect science and research with diverse communities and our shared civic life.

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

Rare Disease Spotlight: Alexander Disease

By Barby Ingle, PNN Columnist  

February 28th is Rare Disease Day, a global effort to raise awareness about over 7,000 rare diseases and their impact on people’s lives. One of those rare diseases is Alexander disease, which is named after Dr. W. Stewart Alexander, the Australian physician who first described the condition in 1949.

Alexander disease is an autosomal dominant leukodystrophy, which are neurological conditions caused by anomalies in the myelin, a fatty substance which protects nerve fibers in the brain. It’s a rare genetic disorder that primarily occurs in infants and children.

Leukodystrophies are characterized by abnormalities in the brain’s “white matter” which lead to the formation of Rosenthal fibers -- abnormal clumps of protein that accumulate in the brain. Rosenthal fibers are also found in other neurological disorders, such as multiple sclerosis.

Alexander disease is progressive and usually fatal, especially when it develops in infants. The disease occurs in both males and females, and there are no ethnic, racial, geographic, cultural or economic differences in its distribution. It can strike anyone.

The most common type of Alexander disease usually begins during the first 2 years of life. Most children with the infantile form do not survive past the age of six. Juvenile and adult-onset forms of the disease have a slower, lengthier course.

People who develop symptoms later in life may not be aware they have Alexander disease and are often misdiagnosed. Symptoms include excessive vomiting, difficulty swallowing and speaking, poor coordination, pain and loss of motor control. These symptoms mimic those of Parkinson’s disease and multiple sclerosis, or they may be seen as a psychiatric disorder.

For children with Alexander disease, there are delays in mental and physical development, often followed by an abnormal increase in head size and seizures. Chronic pain is a daily occurrence. There is no cure for Alexander disease, but there are treatments that focus on keeping patients comfortable and minimizing symptoms.

Recent studies show approximately 90 percent of people with Alexander disease have a mutation in the gene that makes glial fibrillary acidic protein (GFAP), a protein found in the brain. In most cases these mutations occur spontaneously and do not appear to be inherited from parents.

Current research is aimed at understanding the genetic mutations that cause Alexander disease, developing better animal models for research purposes, and exploring new strategies for treatment. Researchers are also looking for biomarkers for the disease, which would be a major advancement in diagnosis and early treatment.  

There are support groups for patients and families affected by Alexander disease, such as the United Leukodystrophy Foundation. You can find more information on Alexander disease and other rare conditions at the National Organization for Rare Disorders.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of theInternational 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.

How to Reduce Brain and Spinal Cord Inflammation

By Forest Tennant, PNN Columnist

Intractable pain syndrome (IPS) is constant pain with cardiovascular and endocrine dysfunction. IPS occurs when the initial cause of pain creates inflammation in the brain and spinal cord. This is called neuroinflammation.

Inflammation in the brain and spinal cord is what causes the worsening of IPS symptoms. Inflammation does its dirty work by burning out or damaging neurotransmitter systems such as dopamine, endorphin, cannabinoid, serotonin, and gaba aminobutyric acid (GABA). Common symptoms of neuroinflammation:

  • Constant pain

  • Fatigue

  • Amotivation (Lack of motivation or purpose)

  • Attention deficit

  • Memory impairment

  • Elevated blood pressure & pulse

  • Social withdrawal

  • Dietary change

  • Weight gain

  • Sugar craving

  • Depression

Every person with IPS must attempt to control and reduce their brain and spinal cord inflammation. To reduce neuroinflammation, we recommend regular consumption of one or more of these non-prescription, natural herbal medicinal agents:

  • Tumeric/Curcumin

  • Ashwagandha

  • Boswellia

  • Palmitoyethanolamine (PEA)

  • Traumeel

  • Cannabidiol (CBD)

  • Andrographis

You can take any of these on different days or several together, as long as you use at least one daily.

If the disorder that started your pain and IPS ends in “itis” -- arthritis, arachnoiditis, pancreatitis, cystitis, colitis or myositis -- you will also need a periodic (e.g., 1-2 times a week) low dose of a corticosteroid such as hydrocortisone, methylprednisolone, prednisone or dexamethasone.

Don’t rely on pain relievers alone. You must have an inflammation reduction component as part of your IPS treatment program.

Forest Tennant 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 has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

A Pained Life: Our Dirty Words

By Carol Levy, PNN Columnist

You may remember the late comedian George Carlin’s monologue: “Seven Words You Can Never Say on Television." I won’t list them here, but they are “dirty” words better off not being said, even off television.

I thought about Carlin’s list the other day when I realized there were some words that I use all the time. They’re not dirty words, but for many of us who have chronic pain, they’re words that often prove to be hurtful. Words that we need to let go of.

For example, a major portion of my trigeminal neuralgia pain comes from eye usage and eye movement. I love to read and whenever I pick up a book I know it’ll cause pain, but I refuse to let the pain take this from me.

As I read, the pain starts to grow and becomes demanding: “Stop! STOP NOW!”  

But the plot is thickening and the killer will be soon be unmasked (I hope) in the next few paragraphs, so I keep reading. And the pain keeps growing.

The voice in my head yells: “You have to stop. You have to stop NOW!”

The other voice, the one that refuses to accept my limitations, answers: “Just one more page. Just one more paragraph. Just one more sentence.”

I can listen to the sensible voice and stop now. Or I can read just a little more. And be in tremendous pain. Most of the time the “just” voice wins. It is a word that is anathema to controlling the level of pain. But I let it win anyway.

Shoulda Woulda Coulda

“Should” is another word that causes us to do so many things we know we shouldn't: “I should make the bed” or “I should make the kids dinner even though the pain is so bad.”

That’s often followed by the self-flagellating counterpoint “I shouldn't have made the bed or read that book. I knew it would make the pain worse.”

“Could” is another one. I find this word to be a favorite of rueful thoughts in the “coulda woulda shoulda” variety. It is also a favorite of others who ironically think it is a compliment: “You could have been a doctor, lawyer or teacher.”

Yes, that’s a nice thing to say. It is usually an effort to compliment us, our intelligence or intrinsic worth. And it is so hurtful. Yes, I know I could have been those things. I may have even tried, but the chronic pain took those options away.

Pretending or refusing to accept our limitations, and knowing when to say when, is often very hard to do. Because we want so much to do more than what the pain allows us to do.

I am sure there are many other words that describe our plight, but in thinking about it they all seem to come under one umbrella word: Denial.

It is hard to do, but we need to learn to accept what we work so hard to deny. When it comes to deciding what we can and cannot do, the pain is king.

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.”

FTC Sues Drug Makers for Oxymorphone Monopoly

By Pat Anson, PNN Editor

It was in 2017 that Endo Pharmaceuticals – under pressure from the Food and Drug Administration -- stopped selling Opana ER, an extended-release version of the opioid painkiller oxymorphone. Opana had been reformulated by Endo to make it harder to abuse, but the FDA maintained the tablets were still being crushed, liquefied and then injected by illicit drug users.

Although Opana has been off the market for nearly four years, a legal battle still rages over sales of generic oxymorphone and whether Endo conspired with another drug maker to control the market for oxymorphone.

This week the Federal Trade Commission sued Endo, Impax Laboratories, and Impax’s owner, Amneal Pharmaceuticals, alleging that a 2017 agreement between Endo and Impax violated antitrust laws by eliminating competition for oxymorphone ER.

It’s the second time the FTC filed complaints against Endo, Impax and Amneal for allegedly creating an oxymorphone monopoly.

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“The agreement between Endo and Impax has eliminated the incentive for competition, which drives affordable prices,” Gail Levine, Deputy Director of the FTC’s Bureau of Competition said in a statement. “By keeping competitors off the market, the agreement lets Impax continue to charge monopoly prices while Endo and Impax split the monopoly profits.”

According to the FTC complaint, Opana ER generated nearly $160 million in revenue for Endo in 2016 and was the company’s “highest-grossing branded pain management drug.” Endo explored bringing another oxymorphone drug on the market to replace its lost revenue, but ultimately decided to partner with Impax, which had the only extended-release oxymorphone drug on the market.. Their agreement allowed Endo to share in Impax’s oxymorphone profits, as long as Endo did not bring another generic tablet on the market.

“The purpose and effect of the 2017 Agreement is to ensure that Endo, the gatekeeper to competition in the oxymorphone ER market, has every incentive to preserve Impax’s monopoly. By doing so, it eliminates any potential for oxymorphone ER competition, allowing Endo and Impax to share in the monopoly profits. As a result, patients have been denied the benefits of competition, forcing them and other purchasers to pay millions of dollars a year more for this medication,” the FTC complaint alleges.

The 2017 agreement between Endo and Impax arose from a breach of contract case relating to a patent settlement between the companies over Impax’s generic version of Opana ER, in which Endo paid Impax more than $112 million not to compete. In 2019, the FTC ruled that settlement was an illegal "pay-to-delay" agreement.  

Both Endo and Amneal deny there was any effort to create a monopoly in their 2017 agreement.

“It is Endo’s position that the Agreement had no adverse impact on actual or potential competition.  At the time of the Agreement, the U.S. Food and Drug Administration had asked Endo to withdraw reformulated Opana ER from the market for safety reasons and Endo had publicly announced its intention to comply with the FDA’s request,” Matthew Maletta, Endo’s Executive Vice President and Chief Legal Officer, said in a statement to PNN.

“Significantly, as Endo has explained to the FTC, the Company has not launched or licensed any new opioid product(s) since that time, and the FTC’s theory that Endo would do so in the current litigation environment but for the Agreement is preposterous.”

“Far from being anticompetitive, the 2017 Amendment resolved a dispute between the parties that could have kept Impax's lower-priced generic product off the market entirely,” Amneal said in a statement. “We are confident there is no unlawful restraint in the 2017 Amendment, because nothing in the agreement prevents Endo from competing, and we intend to vigorously defend against the FTC’s claims.”

The FTC decision to sue Endo and Amneal a second time was approved on a split 3 to 2 vote by the agency’s commission. The complaint seeks monetary relief and a permanent injunction to prohibit the companies from engaging in similar conduct.

Extended-released oxymorphone is approved for the treatment of moderate to severe pain.  

Contact Congress to Make Changes in Federal Pain Study

By Richard Lawhern, PNN Contributor

On January 20, I sent a letter by email to the Acting Director and senior staff of the Agency for Healthcare Research and Quality (AHRQ).  The letter requests the federal agency to immediately withdraw its recent review of prescription opioids and other treatments for short-term acute pain. 

Grounds for the request are clear evidence of unjustified anti-opioid bias by the authors and gross fatal errors of methodology – all of which invalidate the review as resource material for efforts to revise and expand the 2016 CDC opioid guideline.

The anti-opioid bias of Roger Chou and his co-authors is revealed by their selective cherry-picking of references that fail to explore the major effects of genetics in patient response to opioid therapy, as well as improperly generalized findings based on trials of weak opioids like tramadol, which were applied to all opioids.

The AHRQ authors also omit any exploration of serious side effects and mortality caused by non-opioid treatments such at acetaminophen.

But the most fundamental error in the methods of the AHRQ Review is improper use of “meta-analysis” to lump together data and outcomes from multiple small-scale studies of opioid therapy for acute pain. A major underlying assumption of meta-analysis is that patient response in each trial is distributed on a Normal (bell-shaped) curve. However, this assumption doesn’t work for patients treated with prescription opioids.

The distribution of patient outcomes is actually “bi-modal.” One group of patients may experience side effects from opioids, but very little short-term pain relief; while a second group may have substantial pain relief from just one dose of opioid medication. This reality invalidates the major findings of the AHRQ review.

A detailed critique of the AHRQ study is available on my website. Feel free to review and share this information with your personal physician.

AHRQ is fully aware of the errors noted above but has no intention of responding to demands for a correction of its malfeasance and fraud.  Thus, it may be necessary for the U.S. House Government Oversight and Reform Committee to direct AHRQ to withdraw or rewrite its review. 

Such an action has precedents.  In 2015, the Oversight Committee reviewed complaints from the Washington Legal Foundation and others concerning inadequate public hearings on the CDC’s proposed opioid guideline. The committee sent a letter to then-CDC Director Thomas Frieden asking him to explain why so much secrecy was involved in the drafting of guideline and why it wasn’t made publicly available.

Faced with a congressional inquiry, CDC reversed course by delaying the guideline’s release and publishing the draft in the Federal Register for a 30-day public comment period. A new advisory committee was also formed to review the guideline, which resulted in some changes to its final recommendations.

Urgent Action Request

A similar effort is urgently needed by pain sufferers and their advocates to bring the AHRQ review to the attention of Congress, specifically to the House Government Oversight and Reform Committee. Those who wish to involve the committee in corrective action should telephone any or all of the Congressional offices of committee members. 

It is very doubtful that the representatives will actually see anything you leave in their contact portals online. But short, focused telephone calls are harder to ignore. The telephone numbers for members of the House Committee can be found here. If you reach a staff member in their office, you might offer the following information:

1) Identify yourself and provide a call-back number. If you are a medical professional, state your qualifications (i.e. “I am a board certified physician” or “I am a former nursing professional now disabled by agonizing pain.”)

2) If you are a resident of the Representative’s district, say so. You don’t have to be a constituent to make your input.

3) Tell the staffer that you want to report fraud and abuse to the Representative and to the House Congressional Oversight and Reform Committee. 

“I want the Committee to demand corrective action from the Agency for Healthcare Research and Quality, in the same way it did in 2015 when it told the CDC to re-open its proposed opioid guideline to extended public review.”

“AHRQ published a review of treatments for acute pain in December 2020. The review is deliberately biased against the only therapies that work, deeply flawed by errors of scientific method, and outright fraudulent in its conclusions. This review must be withdrawn for independent review.”

4)  Thank the staffer for their time.  Ask “May I expect a callback from a member of the Representative’s staff?”

This is an opportunity to be heard, despite the lies being shouted by anti-opioid fringe groups like Physicians for Responsible Opioid Prescribing (PROP) and Shatterproof.

It is time for you to speak up!

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids.  Red is co-founder of The Alliance for the Treatment of Intractable Pain.

Finding Grace in Family-Induced Pain and Trauma

By Cynthia Toussaint, PNN Columnist

About 20 years ago, my mother called to share what felt like a disorientating thought.

“Cynthia, of all the members of our family, you’re the together one, the capable one and the successful one,” she said.

Though flattered, my thinking was, “How can that be? I’m the daughter with all the problems. The pain, the wheelchair, the one left childless without her show-biz career.”

I’m guessing now that my mother was intuitively letting me in on a secret -- a generations-long family secret. By telling me I had the right stuff, Mom was revealing that I’d broken the trauma cycle. She potently advised that I never let my family members hold me back, to “never not succeed because of them.”

That day I realized I’d done something exceptional, but I didn’t fully understand what it was. You’d think 38 years of chronic pain would have opened my eyes, but it took a cancer crisis for me to deeply examine what my mother was shedding light on.

I come from a profoundly dysfunctional family (domestic violence, divorce, mental illness, suicide, alcoholism, etc.), one so traumatizing my doctor believes that the toll of trying to fix my family, along with the inflammation of CRPS, was what gave me cancer. To have a chance at survival, I had to walk away from the toxic members of my family, which was the hardest and best decision of my life.

Unfortunately though, walking away might not be enough. Now that I’m in remission, I’m concerned that my inability to unlock from my frequent harmful thoughts about the trauma of past assaults will bring on a swift and more aggressive cancer recurrence.

Trauma Release

Enter EMDR (Eye Movement Desensitization & Repossessing). For the uninitiated, EMDR is a psychotherapy treatment designed to alleviate the distress associated with traumatic memories. For years studies have shown that people with serious adult-onset illnesses – including high-impact pain and cancer – experienced many adverse childhood events (ACE’s), as I did.

I’ve long considered doing EMDR for trauma release, but feared stirring up the debilitating depression that my family often sparks. I won’t lie to you. My EMDR plunge has been god-awful, as it’s brought on a ton of expected grieving and even rage. That being said, I’m sticking with it - and astonished by EMDR’s effectiveness and the insight it evokes.

My phenomenal practitioner, Kathy, has pointed out two major, life changing themes. The first, that family trauma is handed down over many generations, adversely changing our gene expression through what’s termed epigenetics. Sadly, I was born into the thick of this ever-rolling harm.

When I was seven, my dad jumped off a bridge due to severe mental illness. Much dysfunction led to his suicide, but this was the tipping point that my family of origin never recovered from.

After sharing what limited knowledge I had of my dad’s past, Kathy quickly assessed that, like me, he had a traumatic childhood. I was stunned to learn that his parent’s alcoholism, affairs and abandonments, along with all of the denial and covering-up, deeply wounded him. That insight gifted me great empathy for the person who shattered my world.

Mom’s side of the family was equally trauma-inducing. After her parent’s ugly divorce and Grandma having my loving grandfather committed to an institution, she had my mother kidnapped. Legend has it that this broke my aunt Grace’s heart, as her agonizing death from leukemia at age 20 soon followed.

To this day, even with advanced dementia, my mother describes her own grandmother as “a witch, the most evil person I ever met.” It goes on and on.

Healing My Inner Child

I finally understand that I have a family tree evergreen with trauma, the root of all my physical and psychological illness.

The second theme Kathy put forth is that to release my trauma we have to heal my “inner child.” I now understand that even as a fetus I took in the negative chemicals and vibe of my mother’s nightmarish situation – and it’s my inner child who’s carrying the greatest injury. The work is tricky because to reach her, we must maneuver around the many protective, life-preserving mechanisms she’s used for 60 years.

With Kathy’s guidance via Zoom, I’m slowly making friends with my inner child. While I want to protect her from the knowledge of a tragic future, ultimately I have to be vulnerable enough to let her spill the repressed memories of violence and dysfunction that host the lion’s share of our trauma.

My hope is that by healing my inner child I can end the cycle of excruciating harm I endure when I think about my family’s countless trespasses. If I can get to a strong landing point of understanding and release, my depression will turn to just sadness – and from there I can move on with better wellness.  

I want to be free.        

No matter the outcome, Mom was on to something. Thankfully, I’ve cracked the family code by asking why and doing the hard work. As Kathy reminds me, I choose “to think, not drink” - and because I don’t maintain the dysfunctional status quo, I’ve “jumped out of a sinking ship.”

All this time I thought my life had been upended by pain, but I now realize it was family trauma that caused every ounce of my misfortunate.    

This insight lovingly brings me to my aunt Grace who, by breaking the family trauma cycle, saved my mother. While I never met her, I see Grace as an angel and forever feel a deep connection, so much so I named my work for her goodness.

We’ve always been compared, and I now see that our similarity extends beyond looks and personality. A quote I continue to hear in my research about generational trauma is “The first born daughter often carries what remains unresolved in the mother.”

Grace and I were the eldest daughters and gave everything to save our broken families, an impossible task.

GRACE HAeRING

GRACE HAeRING

It cost my dear aunt her life – and I think she’s proud watching me fight for mine.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Finding Strength in Little Things

By Mia Maysack, PNN Columnist

It’s a New Year, but that doesn’t necessarily mean all that much to those of us who continuously hurt. We are seemingly living in a perpetual state of Bill Murray-like Groundhog Days -- experiencing the same painful occurrences over and over and over.  

Yet there are limitations to becoming accustomed to the inevitable, because the ailments themselves are ever changing and evolving, requiring us to adapt to them.  

As a result of COVID-19, millions of people who couldn't begin to imagine what it's like to be housebound all day, missing out on important gatherings and enjoyable outings, know what it’s like to have a disease threatening their physical and emotional health.  

It's a unique opportunity to bridge a gap with people who were once unable to relate to me. They learned how I've existed for years: shut-in, limited, alone, and cautious of potential harm or consequences.  

Despite the obstacles, I chose to fixate on gifts of other sorts, the “little” things such as life itself. There is always an amount of suffering that plays a role in my everyday existence, but isn’t that just how life goes in general?  

Some moments are better than others, which I am extraordinarily grateful for. Especially after having lived a majority of my years when there was no improvement, almost leading to complete hopelessness. 

If I did not greet another sunrise, it's true there would be no more discomfort. But it would also mean no more beauty either. Rain, for example, is a necessary requirement for anything to prosper. And the individual storms we all experience in unique ways are intended for personal growth. They heighten our empathy, compassion, understanding and acceptance.

Through the trauma of persistent agony, I've learned how to meet others by both respecting and honoring their journeys, despite the differences between us. Incurable and untreatable circumstances can produce a special humbleness that permits clarity in seeing each other as equals, regardless of the circumstances.  

Being faced with so much difficulty in activities of daily living is daunting to say the least. There were times when I have been swept up and consumed by all that I cannot do, hindering the possibility of investing energy and thought into what I can do. Or how to face challenges in more creative ways, as opposed to merely accepting “no” for an answer.  

Honoring my conditions has helped me to surpass them in some regards. This has assisted in strengthening an ability to fully appreciate what I'm able to accomplish, even if it's minor. Because everything we make it through is a victory in its own right.  

When reflecting upon all we've endured, there should be a tremendous amount of pride in our refusal to give up -- despite how tempting it has been and may still be at times. When we're in need of a reminder, bear witness to how far we've come and the power we have to make it through anything. Though be it far from easy, the quality of our lives is the most worthwhile investment.

Had we not been dealt the hand we received, we would not be who we are. Each of us harbors so much value to offer one another and the world through our experiences. There is always something to be learned and taught.

The treachery of pain continues to test me, but knowing I am not alone provides a sense of relief -- not that I'd wish this on anybody. I've gained a lot that I can now turn around and offer back to the world through legislative action, community involvement, public service and educational efforts. None of which would be possible without each and every twist and turn on this road we call life. 

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

Serious Complications Caused By Poorly Treated Pain

By Forest Tennant, PNN Columnist

Most anyone will tell you that blood pressure goes up due to pain. What is almost unrecognized in medical practice today, however, is that untreated or undertreated pain has such profound and devastating effects on the cardiovascular and endocrine systems that it will inevitably shorten the lifespan of individuals with intractable pain syndrome (IPS).

Constant pain elevates adrenaline and glucose at the same time that it overstimulates the autonomic nervous system, resulting in these cardiovascular (CV) complications:

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  • High Blood Pressure (Hypertension)               

  • Elevated Pulse Rate (Tachycardia)                             

  • Elevated Cholesterol (Lipids)                       

  • Arteriosclerosis  

  • Angina Pectoris

  • Cardiac Arrythmias

  • Heart Attack

  • Sudden Death

The body needs a rest from constant pain to rejuvenate and re-energize the body’s CV and endocrine systems. The first goals of pain treatment must include the attainment of at least some pain free or nearly pain free hours, which enables the body to sleep and let the CV and endocrine system recuperate.

Calcium Complications

For many years, patients, families and doctors were bewildered when a chronic pain patient developed osteoporosis, scoliosis, arthritis, or even their teeth fell out. Now we know why. It is primarily because IPS causes multiple abnormalities in the endocrine system that lower calcium levels. 

Intractable pain is a huge stress that never shuts off, so it causes constant demand on the body’s glands to elevate the “Big 3” hormones: insulin, cortisol and adrenaline. This is made worse if pain is untreated or undertreated. 

Over time, the constant elevation of cortisol causes calcium to dissolve and leave the tissues of the teeth, joints and spine. Vertebrae may become so fragile with osteoporosis that the spine may collapse in places and give you scoliosis. When calcium leaves the joints, you get arthritis. People with IPS frequently have fractured hips and knee joints that have to be replaced. 

When cortisol is raised too long by constant pain, testosterone and estradiol levels may drop, and these two hormones are critical to prevent osteoporosis as they function to build bone, joints and teeth.

When cortisol is too high for too long, glucose and insulin are also raised, causing a nutritional state that may reduce vitamin D, magnesium, and other nutrients critical for tooth and bone maintenance.  

All persons with IPS and their families need to know about the cardiovascular and endocrine complications from untreated or undertreated pain. You may also need to inform your medical and dental practitioners about these health risks. Ask them to test you for high blood pressure, elevated pulse rate, high cholesterol and glucose levels. Most can easily test you for osteopenia (early osteoporosis), endocrine function and vitamin D levels.

Forest Tennant 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 has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.