Did OxyContin's Reformulation Really Lead to More Heroin Use?

By Roger Chriss, PNN Columnist

A common belief in the opioid overdose crisis is that the reformulation of OxyContin in 2010 led to a large-scale shift to heroin. Seven years after making the pills hard-to-crush to discourage snorting or injecting, The Washington Post reported the abuse-deterrent reformulation had made OxyContin “the chief driver of the explosion in heroin overdose deaths.”

The primary source of this claim is a National Bureau of Economic Research (NBER) paper that states “a substantial share of the dramatic increase in heroin deaths since 2010 can be attributed to the reformulation of OxyContin.”

The NBER paper used data from the National Survey on Drug Use and Health (NSDUH) and the Drug Enforcement Administration to assess usage levels of OxyContin and other prescription opioids, and data from the National Vital Statistics System to measure overdose deaths.

The researchers found that “states with the highest initial rates of OxyContin misuse experienced the largest increases in heroin deaths.”

But this conclusion is now being challenged. A recent study in the journal Addiction Behavior looked at NSDUH data from 2005 through 2014 to evaluate the impact of the reformulation on individuals with a history of OxyContin misuse.

The results showed “no statistically significant effects of the reformulation” on prescription opioid misuse or heroin use. In fact, researchers found a “net reduction in the odds” of heroin initiation after the reformulation.

“Thus, the reformulation of OxyContin appears to have reduced prescription pain reliever misuse without contributing to relatively greater new heroin use among those who misused OxyContin prior to the reformulation,” the authors concluded.

Psych Congress also reported there was little evidence of a shift to heroin from prescription opioids, saying drug trafficking data “don't fully support the often-heard conclusion that efforts to limit access to prescription opioids led to a mass migration to heroin."

Murky Data

The reason for the different conclusions is not clear. But much of what is assumed about abuse-deterrent reformulation is not holding up. Last summer, STAT News reported that rates of OxyContin abuse were similar or higher three years after the drug was reformulated. According to one survey, less than 5 percent of long-term abusers gave up OxyContin, suggesting the reformulation didn’t accomplish much.

Data on heroin use also includes considerable uncertainty, and applying state-level data-sets to understand individual usage patterns is tricky. Plus, data on overdose fatalities can be hard to parse since many victims die with multiple drugs in their systems, and toxicology reporting varies by state.

Since OxyContin’s reformulation, six other opioid medications have been approved by the FDA with abuse deterrent properties, costing drug makers hundreds of millions of dollars in research and development expenses.

Figuring out what happens after a prescription opioid is reformulated is important. Current public health policy and prescribing practices are assuming risks and benefits based on limited evidence. If something different or perhaps more complex is happening, then we need to look harder and make changes.

The implications here are also important, including determining liability and damages in the opioid lawsuits, developing effective public health measures for addiction treatment and the overdose crisis, and creating better risk assessment for pain management.

The impacts of the OxyContin reformation may be smaller and more subtle than previously thought. If the new findings hold, then we may have to rethink the benefits of abuse-deterrent formulations and the trajectory of heroin use. In other words, we need to keep looking closely at the overdose crisis and not assume we have it fully figured out.

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

A Pained Life: Prisoners of Pain

By Carol Levy, PNN Columnist

This being President’s Day in the United States, I was reminded of a popular quote attributed to President Franklin D. Roosevelt.

“Men are not prisoners of fate, but only prisoners of their own minds," FDR said.

This is a wonderful quote. For someone in a wheelchair and so physically limited, and who was able to make a very successful and hopefully fulfilling life, FDR’s philosophy makes sense.

Not so much for those of us with intractable pain. Our minds may not be imprisoned, but our bodies are. Our fate is to have pain.

This is not to diminish what President Roosevelt accomplished, or the successes of others with physical or mental limitations. President Roosevelt could not walk without assistance. That was not something he could change.

But pain changes. One moment we may have so little pain we can do the dishes, play with the kids or, in my case, read a book or sing in a chorus. Then boom! The pain, the pain. I can't continue with what I want to do.

We become prisoners of pain.

As many of us know, the invisibility of our pain makes others skeptical. Out of sight, out of mind. I don't see your pain, ergo it doesn’t exist. We are different in so many ways from people like FDR who have disabilities that are plainly visible.

This seems to include even the ability to study and report on findings related to chronic pain. I was researching deep brain stimulator implants for chronic pain, because of the one I recently had implanted. I read a number of studies. Some authors reported good outcomes, others not so good.  

The more I read, the more I realized that research on procedures and treatments for chronic pain cannot be interpreted the same way as studies about cancer and other diseases.  Did the cancer treatment have an effect that benefited the patient?  Yes, they lived longer and the cancer did not spread. Or perhaps the outcome was no, the cancer metastasized and the patient died.   

For us, the conclusions are not as simple. The answers are subjective. Is your pain better? Is it worse? Is it the same? No matter how one answers, can it truly be comparable with those of others in the same study? 

On a pain scale of 1 to 10, what I call a one may not be what you consider a one. By the same token, my 10 may not be your 10, so how can there be a comparison? 

I was once asked if I would be willing to take a survey on suicides or attempted suicides by pain patients. I declined. Absent a suicide note specifying that “I cannot take the pain anymore,” there is nothing but speculation and supposition as to someone’s motive and to what degree it was related to chronic pain. 

We are all prisoners of a disorder that is difficult to treat, much less cure. It will require imagination to put us all in one category and find ways to help us. 

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

Are You at Higher Risk for Coronavirus?

By Dr. Lynn Webster, PNN Columnist

Over 67,000 people have contracted the new coronavirus, now officially referred to as COVID-19. Many of those who died — over 1,500 people to date — were already in poor health.

Fears about the virus spreading led to more than 30 million people being quarantined in the coastal province of Zhejiang, China — which is more than 500 miles away from the epicenter of the virus in Wuhan, China. As I write this, the U.S. and 25 other countries have a confirmed diagnosis of coronavirus

It is clear that COVID-19 qualifies as an epidemic and some experts predict it could become a pandemic (a pandemic is the global spread of a virus, while an epidemic is contained in a particular region, such as China.)

The people with increased risk for experiencing severe symptoms, and possibly dying of COVID-19, are seniors and those with chronic illness. Of course, many people in chronic pain are part of both risk groups. The mortality rate of COVID-19 has been reported to be about two percent.

People with chronic pain may be more susceptible to viruses in general, because chronic pain can change the way our immune systems work. McGill University researchers found that chronic pain changes the DNA in T-cells, a type of white blood cell essential for immunity. Researchers were surprised by the number of genes affected by chronic pain, and hope their findings will lead to new treatments.

Preventing Infections

According to the Centers for Disease Control and Prevention, symptoms of COVID-19 are similar to those of other viruses: fever, coughing, and shortness of breath. Symptoms may be mild or severe, and sometimes deadly.  

Most troubling is that the virus causes respiratory difficulties that can lead to pneumonia — and antibiotics are worthless against viral pneumonia.

In severe cases, COVID-19 can also cause organ failure. A full recovery, according to The Guardian, “will depend on the strength of their immune system."

One of the most effective methods to reduce illness and mortality from viruses is to develop and use a vaccine. Vaccines prevent an estimated two to three million deaths worldwide every year, according to WHO. 

Developing new vaccines used to take at least a decade. However, thanks to recent medical advancements, it may be possible to develop a vaccine that can prevent COVID-19 in a matter of months.  

World Health Organization (WHO) Director-General Tedros Adhanom Ghebreyesus has called COVID-19 "a very grave threat." However, Ghebreyesus stresses that while we wait for a vaccine to be developed, we are not defenseless. The CDC recommends following the usual advice about protecting yourself from viruses: stay away from people who are sick; wash your hands and avoid touching your eyes, nose, or mouth with unwashed hands; and clean and disinfect objects that you touch. 

Since chronic pain can compromise the immune system, pain patients should follow the best available advice to protect themselves from exposure to COVID-19. The potential of infection is a serious issue that should not be dismissed, particularly for people with chronic pain and illness. 

Feeding on Ignorance 

One of the most significant threats to the spread of disease is social rather than medical: the dissemination of rumors and false information, such as conspiracy theories by anti-vaxxers. Even intelligent people with otherwise good reputations, such as Robert Kennedy, Jr., are promulgating nonsense about vaccines through social media to millions of people. These efforts must be discredited and stopped.  

According to a recent Gallup poll, the pharmaceutical industry is regarded more negatively by Americans than any other industry. There are well-known reasons why the public has a dim view of Big Pharma, but it’s the only industry that can prevent the deaths of an untold number of people during pandemics. In this situation, we need to cheer them on. 

Immunization is important to stop the spread of viruses. But first, the vaccines must be developed. Once they are available, people with chronic pain should discuss the potential benefits and risks of immunization with their physicians.  

President Trump recently said the coronavirus may disappear by April. This is a dangerous statement. In the United States, most viruses wane in the summer, but not always and they usually reappear by fall. Dr. William Schaffner, medical director of the National Foundation for Infectious Diseases, points out that some respiratory viruses may exist year-round in other parts of the world.  

There is never a good time to disregard science. But if there were, the start of a new pandemic surely would not be it.   

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

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

Hearts Go Out to Our Personal Caregivers

By Barby Ingle, PNN Columnist

With Valentine’s Day coming up and February being Heart Month, I thought it would be fitting to say thank you to my caregiver and husband, Ken Taylor.

Ken has been working overtime this past year, and especially in the last few months as I have been ill with Valley Fever. He is one of those caregivers who dedicate their lives to helping pain patients, making our lives better just because he cares.

Like many caregivers, Ken is not paid for assisting me or the many others he has helped over the years. He does it out of love, respect and dedication.

Caregivers have a large responsibility once they take on the role. Ken has helped me with personal care, such as bathing, grooming, dressing me, and helping with laundry or other cleaning duties that were once things I loved doing.

Not being able-bodied has really put a lot of pressure on Ken, but he makes sure I am taken care of every day.

Luckily for me, he is also great at cooking. I am the worst cook I know and was that way even before I developed disabilities from chronic pain and other rare conditions.

Ken loves to cook and does most of the meal prep, shopping and other housekeeping duties. He does it with a smile most of the time.

KEN TAYLOR AND BARBY INGLE

Some other responsibilities Ken has taken on include help with packing for a trip, making sure my wheelchair was charged up, providing transportation and being a great emotional support for me. Many times over the years he was the one who made sure I was put together and looked “camera ready” when we had a TV crew filming or doing interviews as part of our advocacy for the pain community.  

Ken gets love, credit and thanks from me often, but I sometimes feel that his work – like most caregivers -- is not as appreciated by society. People don’t realize how much our caregivers help us.

Here is a short list of 10 things that caregivers do: 

1. Assist with personal care such as bathing, grooming, dressing, toileting, exercise, meal preparation, shopping, housekeeping, laundry and other personal errands

2. Care for the elderly such as orienting someone with Alzheimer’s disease or dementia

3. Communicating with healthcare providers as an objective advocate and relaying information from providers to other family members

4. Providing support as a stable companion and confidant in all matters personal, health-related and emotional

5. General healthcare such as overseeing medication use, appointment reminders and help with exercise

6. Home organization and cleaning

7. Mobility assistance such as help with getting in and out of a wheelchair, car or shower

8. Monitoring a care plan and noticing any changes in the individual’s health and reporting them to healthcare providers

9. Providing companionship and general supervision

10. Transportation such as driving to and from activities or running errands

Our caregivers also help us navigate and negotiate our way through the complex healthcare and education system. They are our voice when we’re not up to the challenge of a given situation.  

Accepting help from a caretaker doesn’t mean giving up your independence. By accepting help when needed, you can build on your ability to help yourself and spend your energy on enjoyable activities that would be missed otherwise. Caretakers provide guidance, family empowerment and appropriate help. That is why it is important to include them in your care decisions and in setting expectations.  

One goal I have as a pain patient is to increase my daily activities as much as I can. Sometimes for me this includes the use of a wheelchair and other assistive devices. I look at them as a way to get more activities done independently. For years I was unable to walk long distances, so I got a scooter and was able to ride two blocks over to our mailbox to pick up the mail. Once I got my scooter, it gave me more freedom and I was able to accomplish more, relieving some of the duties Ken was doing.  

Thank you with all my heart for my caregiver! May he always choose to help me when he can, take breaks when he needs them, and may we support each other in all our days. Thank you to Ken and all caregivers who are making our lives more manageable.   

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

This Film Is Far from a Joke

By Dr. Lynn Webster, PNN Columnist

Good films entertain. Great films inspire. Sometimes, they even galvanize people to create a social movement against injustice.

I recently saw one of those rare movies that fall into the category of movies that can inspire: Joker.

The film moved me, and I think it has the capacity to raise the consciousness of other viewers, too. This is why I was surprised to read extremely negative critical reviews about Joker.

The Guardian dismissed the movie as being “shallow,” while the The New Yorker described the film as “numbing emptiness.” The New York Times labeled it as an “empty, foggy exercise in second-hand style and second-rate philosophizing.”

These reviewers all missed the point.

To me, Joker contains substance and in-depth messages about the shortcomings of our health care system, and the part that society's cruelty plays in the development of a psychopath. The gravity of the film caught me off guard.

I was expecting to see just another comic book/adventure movie, but this was far more than that. The film clearly shows a pattern of childhood trauma, repeated shame, income disparity, lack of health care, discrimination, corruption, and rebellion. In other words, Joker reflects real life through excellent and Oscar-nominated acting and production.

Joker demonstrates what happens if you take two people and put them in two different environments. You shower one person with money, love and other advantages, while you deprive the other of all those things.

WARNER BROS.

The movie shows that the result is the creation of one hero and one anti-hero.

Batman's nemesis, the Joker, didn't start off as a bad person. He once was a child named Arthur Fleck.

Fleck’s story begins with the physical abuse he suffered as a child at the hands of a harsh, rigid father and an enabling mother with serious mental health problems. She alleges that she had an affair with the wealthy businessman and politician Thomas Wayne (father of Bruce Wayne, who eventually becomes Batman).

Fleck believes his mother had the affair and, therefore, he is owed respect and support from Thomas Wayne. However, a callous and cruel man causes Fleck to doubt his parentage. Fleck learns from this man that he may not be Wayne’s child, and that his mother may have adopted him and kept the truth hidden from him. This deceit causes him unbearable shame.

In a startling contrast of good vs. evil, Bruce Wayne is blessed with a happy childhood, while Fleck suffers layer upon layer of abuse. His rage builds throughout the movie with recurring episodes of humiliation.

Fleck develops a neurologic disorder called Pseudobulbar Affect, a condition of involuntary, uncontrollable laughter and crying. The condition sets him up to be repeatedly isolated and ridiculed.

Fleck comes to see the inequity of his upbringing. Because the man he still believes may be his father withholds economic and emotional support from him, he experiences escalating anger and mistrust of politicians and the wealthy.

Fleck holds it together until his health care benefits are cut off and he can no longer see his therapist or receive medication. Then he snaps and becomes society's worst nightmare: the Joker.

Batman fans know the rest of the plot. So does anyone who follows the news.

What the Joker experiences, and the consequences of those misfortunes, happen all too frequently in real life.

Society's failure to provide treatment for people with mental illness, and the cruelty with which we shun them, create the seeds of school shootings, terrorism, mass murders and other horrible crimes.

People aren't necessarily born with a greater capacity for hatred than others, nor are they necessarily destined to become criminals. They may be born with mental illness, but it is often environmental factors — including society's lack of empathy, and its failure to treat them humanely and compassionately — that put them over the edge.

My hope is that audiences will see that a "joker" is made, not born. Some of the same ingredients that create a psychopath may also sow the seeds for drug abuse and many other societal pathologies.

Joker is not shallow or empty. It is a reflection of what society experiences when people receive too little empathy, too little love and too little support.

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

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

How to Win Your Disability Case

By Mia Maysack, PNN Columnist

A dear friend and I have ventured through the Social Security disability process. We’re both severely impacted by chronic head pain caused by traumatic brain injuries. Her pain stems from a motorcycle accident, while mine is a souvenir from bacterial meningitis. 

Our paths crossed while attending a lobbying event. We bonded instantly -- not only because we could relate to each other’s pain -- but because we pushed ourselves far past our limits. Accepting reality is tough on us both.   

Neither of us are fluent in the practice of law, although my friend worked as a paralegal prior to her health deteriorating. Together, we’ve cultivated a few main points to be used as a guide for others who may be considering their own pursuit of disability. 

First, take a moment to realize it requires much patience and time. For us there were moments of frustration and disheartenment. It’s highly probable that Social Security will deny your first claim and that you’ll need to appeal. This is how it goes for almost everyone. 

On average, a 2 to 3-year window can be expected from the time of filing your first claim until you are potentially approved. Each person’s case is different. It took four years before my application was approved.  

During the interim there’s still a need for money to survive and there are no guarantees that you’ll win.

It is your right to obtain legal help and many lawyers state they are not entitled to compensation unless benefits are granted. You do not necessarily need an attorney or representative, but doing so could speed up the process. Many of us have difficulty functioning, let alone keeping our thoughts straight, so appointing others such as a trusted friend or loved one is another possibility.   

It all boils down to what can be proven, so the most effective way to go about proving your claim is through documentation.  It is important to keep your medical records organized. Personal journals and diaries are also options, and compiling them could aid in coming to terms with whatever your situation is — an opportunity for accepting a “new normal.”       

Ultimately, the judge will want to see continuous visits with healthcare providers, focusing on the conditions that limit or prevent your daily activities and work. The invisibility of chronic pain is very difficult for some people to comprehend, so you will need proof.  

It is possible that a health care professional may not wish to complete the paperwork on their end because it only adds to their overflowing caseload. It’ll be your decision to continue hounding them for what you need or perhaps seek out a more empathetic provider and start over from scratch.   

What If I Win?

If you are granted disability benefits, it is imperative to take a few things into consideration.

First, celebrate the victory. And then be prepared for more work. Be sure to apply for secondary Medicare insurance within the allotted time frame in order to optimize the healthcare resources available to you.

A certain amount of income is permitted while receiving disability. Any sense of financial independence is encouraged, but returning even to part-time employment poses the risk of your case being questioned after your income caps out at a certain dollar amount. The assumption may be drawn that you are not only fine enough to return to work, but also that you're no longer in need of supplementary income.  

Reviews occur on a regular basis, demanding consistent proof that your situation is still as severe as it was. The Trump administration has proposed new rules that would increase the frequency of disability reviews, which some critics say could result in thousands of Americans losing their disability benefits.

Be sure to continue seeing your providers, taking your medications and doing what is expected of you. Noncompliance and missed appointments could lead to a denial of your claim, which is far from ideal due to the difficult reinstatement processes.  Keep track of relevant documents and maintain personal records of your own to present upon request.

The moment my disability paperwork went through, the insurance I obtained through the state immediately ended. Several months passed before coverage was reinstated. Thankfully, that was okay for me not be covered for a while, but for many others that could be detrimental.

Getting disability can be a daunting experience, but a wise person told me that I’d learn a lot going through the process. My friend and I prevailed. Hopefully, you will too.

Mia Maysack lives with chronic migraine, cluster headaches 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.

Fentanyl’s Relentless March

By Roger Chriss, PNN Columnist

There is simply no good news where illicit fentanyl is concerned. A DEA report last week called fentanyl the “primary driver” of the opioid crisis, with fentanyl widely available as a street drug in the Midwest, Great Lakes, Northeast and Southwestern states.

The much-feared possibility that the fentanyl crisis is spreading to other parts of the country is proving accurate, and efforts to intervene are not going well.

According to the San Francisco Chronicle,, the number of fatal heroin and fentanyl overdoses more than doubled in the city from 90 in 2018 to 234 last year. UCLA drug researcher Dan Ciccarone, PhD, told the Chronicle that “Fentanyl’s not going away. We have to learn to adapt to it.”

A January bust in Arizona supports this claim. PNN reported that nearly 170,000 counterfeit oxycodone pills made with fentanyl were seized in Phoenix by the DEA and local police.

Similar trends are seen in Washington state, where preliminary reports by law enforcement for 2019 show “notable increases” in illicit fentanyl seizures. A December 2019 raid in North Seattle netted 2,700 counterfeit pills and a manual pill press.

Nationally, fentanyl has been a worsening trend for years. The CDC’s Provisional Drug Overdose Death Count shows a steady increase in fentanyl and other synthetic opioid overdoses through June 2019.

COUNTERFEIT OXYCODONE

By comparison, overdose fatalities for natural and semi-synthetic opioids, which includes oxycodone and hydrocodone, are trending downward.

The federal government is struggling to find an effective response. Reuters reports on a newly proposed measure that would allow the DEA to permanently place all fentanyl analogues into the same legal category as heroin and cocaine, making it easier to prosecute drug dealers trafficking new chemical versions of fentanyl.

But as Reuters notes, the DEA found only two new types of fentanyl analogues in 2019, and saw a significant drop in mail seizures of the drug from 2017 to 2018. In other words, fentanyl trafficking is evolving faster than law enforcement and regulatory responses can keep up. The drugs are being smuggled into country, assembled locally and distributed clandestinely -- all outside the scope of conventional interdiction techniques and supply-side interventions.

This underscores the value of a more comprehensive approach to the opioid crisis described by National Institute on Drug Abuse director Nora Volkow, MD, who recently visited a needle exchange program in Philadelphia.

“Our visit to Philadelphia drove home for me why we need to address the stigma that still surrounds opioid addiction and its treatment. It also drove home why addressing the crisis will require a comprehensive approach — including treatment with medications along with harm-reduction (like needle exchange), as well as case management and an array of nonmedical services that can attend to people’s basic needs, including helping them build meaningful social relationships,” Volkow wrote in her blog.

The U.S. has seen great success in reducing cancer deaths. A combination of public health prevention, screening and monitoring of at-risk populations, research into new treatments, and clinical care have brought down cancer death rates every year since the early 1990s.

Near real-time monitoring of disease is not impossible. In a matter of days, researchers at Johns Hopkins University created a global report on the coronavirus that is updated daily. A similar tool for the overdose crisis would be invaluable.

Illicit fentanyl is rapidly penetrating drug markets as a drug of abuse and as an adulterant in heroin and counterfeit medications. Coupled with a resurgence in cocaine and methamphetamine, the overdose crisis is rapidly becoming a syndemic that is spreading nationwide. Only a comprehensive approach will lead to a sufficient response.

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

Do You Have ANT’s? How Awareness Helps Avoid Negative Thoughts

By Dr. David Hanscom, PNN Columnist  

This is the third in a series of columns on awareness -- a meditative tool that can be used to calm the nervous system to reduce pain and anxiety.  In my previous columns, I looked at environmental awareness (how mindfulness lowers stress hormones) and emotional awareness (how moods affect how we feel physically). 

The third level of awareness I’d like to introduce you to revolves around judgment and storytelling. On this level, you create a “story” or a judgment about yourself, another person or a situation. These judgments tend to be criticisms that are rough and inflexible. The brain has a bad habit of focusing on negative judgments that ramp up our emotions. 

We can categorize these negative thoughts into ten “errors of thinking” outlined by Dr. David Burns in his book “Feeling Good.” Burns calls these thoughts “ANTS,” which stands for automatic negative thoughts.

For example, imagine someone at work walked by you and didn’t acknowledge you. You might think they’re upset with you about a situation that occurred the day before. The error in thinking in this case would be “mind reading.” You can’t read other people’s minds. 

It’s possible that the other person had just received some bad news and wasn’t engaging with anyone. But you don’t really know. If you make assumptions, you’re wasting a lot of emotional energy.

Labeling 

Then there is the error of labeling. For example, a frequently late spouse becomes “inconsiderate.” A forgetful teenager becomes “irresponsible.” In the act of labeling, especially negative labeling, you’re overlooking circumstances and someone’s good qualities, limiting your capacity to enjoy being with them. 

Then there are the labels we have for ourselves: you knock something over and call yourself “clumsy.” If a lover breaks up with you, then you’re “unlovable.”  

Rehashing these critical judgments in our minds turns them into deeply embedded stories. Such stories are much harder to move on from than single judgments. Once a judgment sets into a story, you tend to lose all perspective. Over time, faulty thinking can become your version of reality. 

In my own experience, whenever I have an “ANT,” I become either angry or anxious (or both). I am also sometimes more reactive or impulsive. These emotions fuel negative thought and it becomes repetitive. As the thought keeps whirling around, it becomes stronger, along with my emotions. They quickly destroy my day and negatively affect my relationships. 

I’ve heard this thought pattern described as a vicious cycle or whirlpool. These kinds of thoughts, or stories, can become recurrent and might last for years. They take on a life of their own even though they are often fairly outrageous.  

Regardless of what sets these patterns of thinking off, they are a universal part of the human experience. This is true whether chronic pain is involved or not. With chronic pain you have the added frustration of the physical stimulus to keep these circuits really spinning.  

Self-Perceived Flaws 

To better understand the story concept, consider common situations where the brain focuses on a self-perceived flaw that is not physically painful. It might be your height, weight, the shape of your body, or even an individual body part. Or it might be some particular quality, such as a lack of intelligence, athletic skill, musical talent, etc.  

Thinking about these flaws over and over snares you in a destructive cycle of spinning neural circuits. For example, many years ago I had a patient with neck pain who was absolutely convinced that he was “stupid.” His self-labeling wasn’t rational, as he was clearly a bright guy. I don’t know if his view of himself somehow triggered it, but he eventually developed a significant chronic burning sensation around his mouth. 

Something similar often happens in the entertainment industry, where performers commonly focus only on their negative reviews. My wife, who is a tap dancer, has seen this in her profession for years. She pointed out to me that a performer might have 99 positive reviews but will fixate on the one that’s negative. It’s a common saying among entertainers that, “You’re only as good as your worst critic.” 

ANT’s and Relationships 

Another common phenomenon is focusing on a spouse or partner’s negative traits. The other person usually has innumerable positive qualities that are forgotten in the face of their “flaw.” Over time the “story” we tell ourselves can become so strong it can break apart an otherwise great relationship. 

One particular event from my own life comes to mind. It shows how creating stories has the power to disrupt your peace of mind and detract from your enjoyment of life. 

One day my wife and I were taking my father for a ride up to beautiful Point Reyes, located on the coast north of San Francisco. About 20 minutes into our trip I noticed that the car’s low-tire-pressure light had come on. It was a brand new car with only a thousand miles on it, so I thought it was probably just a malfunctioning light.  

I wasn’t convinced that we’d made the correct decision to buy this car in the first place -- it was more expensive than I was comfortable with -- so I was more than a little frustrated that the warning light had a glitch. 

I stopped to put a little air in the tire, just in case, and then kept driving for another 45 minutes. As we approached Point Reyes in the early afternoon, we realized that the tire was really low, so I pulled over to change it. But when I opened the trunk, there was no spare.  

The story in my head was starting to ramp up as I wondered in frustration why a new car wouldn’t have a spare. I called the car company’s roadside assist line and they told me these new cars had “run-flat” tires that should be good for 150 miles at a maximum speed of 50 miles per hour.  

I felt a little insecure about that concept. We were a long way from the last large town we’d passed and I thought that we should turn back. My wife thought that since my father rarely made it to California from the East, we should go out to dinner. So, we headed toward a restaurant. About three miles down the road the tire exploded. 

It was now about four o’clock in the afternoon and we were miles and miles from anywhere. Our only option was to get towed courtesy of AAA. It was hard for me to accept the fact that I had to get my new car towed for a flat tire.  

The tow truck driver showed up to take us to the service station and let the three of us ride in the cab, with my wife sitting on my lap. She started to complain about the bumpiness of the ride, which I found a little annoying. “I’m the one on the bottom, why are you complaining?” I thought.  

She wanted to have dinner in San Rafael and take a taxi home. I started to grind my teeth to keep my mouth shut. 

Magnifying the Problem

This is how the afternoon unfolded for me. Starting with the low tire, I’d made a decision to enjoy my time with my family in spite of the problem. I took note of my frustrations and concentrated on listening to the conversation and staying involved in the day. I was successful for a while -- until the tire blew up.  

Then my anger began to bubble. I became aware that in spite of everything I’d learned about dealing with stress, I was greatly magnifying the problem with the ANT thoughts in my head. I was thinking things like, “I can’t believe I got talked into buying this car” and “My wife made me buy it.” 

Although there might’ve been some truth in the things I was telling myself, I recognized that it wasn’t helping us get through the situation. Nonetheless, I wasn’t able to minimize my suffering through the stress relief techniques that had helped in the past, which was frustrating. I tried to talk myself out of it, but it didn’t work. 

Then I began to go really dark with thoughts like, “How can I be married to this woman?” I began to notice how irrational and big these thoughts had become. It felt like a bomb had exploded. I was miserable way out of proportion to the situation. 

I was guilty of multiple errors in thinking. They came in the form of labeling – “My wife is irresponsible”— and catastrophizing -- “Why did we get married?”  

Through it all, I negated her many positive qualities. To cite one, she’s great at keeping things light, no matter what the problem. And unlike me, she was able to keep her cool throughout the day. 

In the past, I would’ve remained in this agitated state of mind for days, with some carryover lasting for weeks. I wouldn’t have been able to separate my wife’s actions from my thoughts and realize that the problem wasn’t her, it was my reaction to the situation.  

It was a major step for me to become aware of how out of proportion the stories in my head had become. This degree of awareness changed the game for me. 

Eventually, we did get towed home. We went out to dinner. I still love my wife. And I learned yet another lesson in humility.

Dr. David Hanscom is a retired spinal surgeon. In his latest book -- “Do You Really Need Spine Surgery?” – Hanscom explains why most spine operations are unnecessary and usually the result of age-related conditions that can be addressed through physical therapy and other non-surgical methods.

A Cautionary Tale About Living Wills

By Dr. Lynn Webster, PNN Columnist

If you become sick and incapacitated, who will decide what type of medical treatment you receive?

Many people don’t want to leave it to chance. They document their end-of-life preferences in an advance healthcare directive – also known as a living will -- believing that will ensure that their wishes are followed.

However, too often that doesn't happen. As The New York Times reported, the language in advance healthcare directives is often unclear, so doctors and family members may not know what their legal obligations are under specific circumstances. Having an advance healthcare directive may also provide a person a false sense of comfort -- if nobody knows it exists.

One woman’s story is an example of how end-of-life wishes can be ignored. “Frances” was estranged from her family, so she asked her longtime business associate, Eleanor, to be her health care proxy.  If there ever came a time when Frances couldn't make her own decisions, Eleanor would do so as proxy. They signed the paperwork, but then Eleanor lost track of Frances.  

After an incapacitating stroke, Frances was placed in an assisted living facility. She suffered from aphasia and, perhaps, dementia. She no longer had a voice in where she was, what happened to her home or what medication she was given. All control of her life had been ceded to an unknown and potentially self-serving guardian.

States can legally give strangers control over a debilitated person's money, home and medical care. Court-appointed guardians are professionals who handle the affairs of the elderly or infirm when there are no family members to take on that responsibility and no paperwork leading to anyone else who is willing to do so.

Guardians may be honest and very much interested in the best for the incapacitated person, but this is not guaranteed. The guardian may have minimal accountability, and the person placed under guardianship can be at the mercy of this individual. Loss and abuse may follow.

A HuffPost article likened this situation to a “con game” that has led to “a silent epidemic of elder abuse.”

According to AARP, court-ordered guardianship "often leads to isolation and exploitation of older Americans." Approximately 1.3 million adults, most of them older than 65, are currently under guardianship in the United States. Frances is one of them. Her story strikes a chord with me, because people of a certain age or those with a disability, can so easily find themselves in that position.  

The Missing Health Care Proxy Document 

A neighbor remembered Frances had once appointed someone named Eleanor (whose last name was unusual enough and whose profile was high enough that she could be found online) as her proxy. The neighbor tracked Eleanor down, hoping she would be able to legally advocate for Frances.  

Eleanor was unable to find her copy of the healthcare proxy document. However, she drove eight hours to the assisted living facility where Frances had been placed and was able to ascertain that Frances was relatively comfortable and safe.  

Eleanor was still worried that the court-appointed guardian had questionable motives for getting involved in the case and was brokenhearted to know that the advance healthcare directives Frances had put in place had not been honored. No one besides Eleanor knew what they were and she was not allowed to participate in the decision-making process.  

"Frances had a will, a trust, a health care power of attorney, and other documents executed. She chose me as her health care proxy because I have extensive experience in finance administration. We'd worked in the same industry for decades and had a mutually trusting relationship. But we both failed to do what we needed to do to be sure Frances's preferences were honored,” Frances explained. 

Difficult Conversations Can Make All the Difference 

At some point in our lives, many of us may find ourselves in a position where we can't communicate our preferences. It can be helpful to think through the type of medical care you will and will not want to receive in various situations, and commit your wishes in writing by filling out your state's advance directive form.  

Unfortunately, if the probate court (or whatever it is in your area) chooses, the judge can set these arrangements aside and institute whatever she or he deems necessary, which usually includes appointing a professional guardian. This is most likely to happen when trustees or guardians cannot be located, so do your best to cover your bases in advance.  

It is important to have conversations with your closest family members, friends and healthcare providers about the medical care you would prefer in the most difficult situations. Give them copies of the paperwork.  

Avoid creating a vacuum that a professional guardian may be ordered to fill by firming up your own support network now—while you still have time.

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

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

3 Tips for Living With Chronic Pain

By Barby Ingle, PNN Columnist

A bunch of people on social media have been asking what my best tips are for the pain community.

With my health being so poor, as I am going through Valley Fever on top of all the chronic illnesses I live with, my thoughts immediately turned to health.  So many friends have helped me over the past few months with prayers and positive thoughts, or sending food or someone to help clean the house. It is all so appreciated and has shown me that people really care how others in the community are doing.

Here are three tips I’ve learned:

1. Share your pain story

2. Control your outlook, stress and pain levels as best you can

3. Keep a journal

We all have something that we are dealing with on a daily basis and sharing our stories provides hope to others by letting them know they are not alone. It doesn’t matter if you are sick or healthy, rich or poor, we all have challenges to face in life.

I share my experiences to let others know there are other options and reasons for hope. There is always something else to try. I may not always have immediate access to it, but I can work on a plan to create access.

Learning and practicing self-care is also key. It could be remembering to take deep breaths or meditate to help lower cortisol and other stress hormones. This helps me with relaxing, sleeping and stress reduction. This past year was very stressful for me, so I was taking daily walks to reduce stress and increase endorphins, which help lower pain.

I don’t drink alcohol or smoke, but drank two sodas a day for most of my life. I am currently abstaining from soda -- partially because of my last hospital visit and partially because I have no other vice in my life and wanted to see how long I can go without soda.

My husband has to have his coffee every day or he is cranky — and I was wondering if cutting out soda would do something positive for me. Sadly, it has not. But when I have encountered two stressful situations recently, I wanted that soda. My mind knew that it would soothe me, like a beer would for someone else. Soda is something that would help me feel better, but now I know I can live without it.  Just knowing that is a mental comfort.

Find your comforts, and if they are not already healthy ones, consider changing them to see if you can be soothed by something else that will be better for you in the long run. 

My final tip for patients is to track your pain level, medications, intake and activities every day in a journal for at least 120 days. This helps you and your providers see patterns, and you can adjust your treatment plans and goals more appropriately. Keeping a journal not only helps me see patterns, but it helps me communicate more effectively with my providers about my needs.

No matter where you are in your health journey, remember that you deserve access to proper and timely pain care and that you can find a way to get the care you need. It will take time and effort, but it is also possible.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

Public Officials Ignorant About Overdose Crisis

By Christopher Piemonte, Guest Columnist

A recent Washington Post article highlights an ongoing debate between the Drug Enforcement Administration and some public officials, who are demanding that DEA further reduce the supply of opioid medication. DEA has responded that, without more precise data, such a reduction would be ineffective and dangerous for Americans that need opioids.

At the center of the debate is the Aggregate Production Quota (APQ) for Schedule I and II opioids and other controlled substances. Every year, the DEA sets the maximum amount for each substance that can be produced. DEA began cutting the opioid supply in 2017 and has proposed further cuts in 2020.  

Congressional lawmakers and state attorneys general argue that the APQ for opioid medication is still too high, and the excess supply leads to overdose deaths. In a recent letter to the Acting Administrator of DEA, six attorneys general claim that the APQ does not account for opioids diverted to the black market, which “factor in a substantial percentage of opioid deaths.”

Citing data from the CDC, they assert that in 2016 “opioids obtained through a prescription were a factor in over 66% of all drug overdose deaths.”

There’s a problem with these claims: They’re wrong.

When asked about the accuracy of the letter, a spokesperson for CDC said prescription opioids were a factor in “approximately 27% of all drug overdose deaths,” a figure nearly 40% lower than that presented in the letter.

It would be one thing if this error were simply a typo or miscalculation. But these state officials, as well as many lawmakers, are insisting on a specific policy response without having made the effort to dig into the data and understand the nature of the problem itself. Specifically, they cite inaccurate data to support the incorrect notion that “prescription opioids have been a dominant driver in the growing crisis.” What’s worse, that false notion is the basis for their intransigent insistence on a blanket reduction in the supply of all prescription opioids.

Experts in law enforcement, medicine and policy agree that the attorneys general made an erroneous factual conclusion, and that an arbitrary opioid quota reduction would be both ill-informed and dangerous.

“There is no question that the DEA, or any agency, attempting to come up with valid quotas for controlled substances will find it difficult if not impossible. One of the problems with interpreting overdose death information is that illicit fentanyl and heroin deaths are frequently lumped together with oxycodone- and hydrocodone-related deaths,” said John Burke, President of the International Health Facility Diversion Association and a former drug investigator for the Cincinnati Police Department.

“The vast majority of people prescribed controlled substances take them as directed. Proposed cuts in quotas will negatively impact Americans who have a legitimate medical need for opioids, causing them even more discomfort and distress. These patients are routinely overlooked when considering the prescribing and dispensing of controlled substances, and it is a tragedy.”

Increased Demand for Street Drugs

Other experts warn that further reducing the supply of opioid medication will lead to drug shortages and increase demand for illicit drugs.   

“On the surface, it appears that limiting the quotas…could, in fact, provide a means to address the overdose crisis,” said Marsha Stanton, a pain management nurse, clinical educator and patient advocate. “That, however, will do nothing more than to minimize or eliminate access to those medications for individuals with legitimate prescriptions. We have already seen the effects of back-ordered medications, which create significant barriers to appropriate patient care.”

“Patients who lose access to prescriptions for opioids, have, in some cases, turned to street drugs as an alternative. This has led to increased morbidity and mortality since street drugs have uncertain content and are often used in a comparatively uncontrolled manner,” said Stuart Gitlow, MD, an addiction psychiatrist and past president of the American Society of Addiction Medicine.

“We, therefore, cannot afford to use a crude blunt instrument such as a quota change to address the drug abuse problem. Rather, we must focus on each patient individually and, through education of clinical professionals, ensure that each patient receives medically reasonable treatment.”

By continually insisting on cuts in opioid production, public officials demonstrate a lack of understanding of America’s overdose crisis. Put simply, they’ve failed to do their homework.

“For more than a decade, experts have urged government officials to focus on much more than reducing the opioid-medication supply. Yet, they remain fixated in intellectual laziness,” said Michael Barnes, Chairman of the Center for U.S. Policy and a former presidential appointee in the Office of National Drug Control Policy.

“Policy makers must reduce demand by prioritizing drug abuse prevention, interventions, and treatment. Prevention is the biggest challenge because it will require public officials to realize and respond to the socioeconomic underpinnings of drug abuse. The time is long overdue for politicians to get serious and do the work necessary to save lives and solve this crisis.”   

The disturbing reality is this: Despite rising death tolls and the shortcomings of recent responses, many officials involved in overdose-response policy misunderstand the complexity of America’s overdose crisis.

Until those individuals are educated about the nuances of the issue, they will continue to demand policy that does not adequately address the problem, and the crisis will carry on. Continued ignorance on the part of government officials would truly be, as Mr. Burke put it, a national tragedy.

Christopher Piemonte is a policy manager for the Center for U.S. Policy (CUSP), a non-profit dedicated to enhancing the health, safety and economic opportunity of all Americans. CUSP is currently focused on identifying and advancing solutions to the nation’s substance abuse, mental health and incarceration crises.

The Real Reasons People Become Addicted

By Dr. Lynn Webster, PNN Columnist

The Atlantic recently published an article, “The True Cause of the Opioid Epidemic,” that shares an underreported view of the complexities of the opioid crisis. The article acknowledges the epidemic is a multi-faceted drug problem that is largely driven by economic despair.

Yet most of the media remains focused on the large volume of opioids being prescribed, while ignoring the fact that opioids fill a demand created by deeply rooted, unaddressed societal problems.

As PNN reported, a recent study found that auto plant closures in the Midwest and Southeast created a depressed economic environment where drug abuse thrived. Poverty and hopelessness, more than overprescribing, were the seeds of the opioid crisis.

But those factors are only part of the issue. The prevalence of mental health disorders, the lack of immediate access to affordable treatment of addiction, and inadequately treated chronic pain — along with poverty and despair — have caused and sustained the continuing drug crisis.

One of the challenges in beginning to solve the crisis is to change how we view people with the disease of addiction. Rather than provide them with access to affordable healthcare, we stigmatize and criminalize them. This creates recidivism rather than rehabilitation. It affects people who use drugs for the wrong reasons, as well as people who use opioids for severe chronic pain.

Debunking Myths About Addiction

Many people make another false assumption. They claim that opioid addiction develops solely because of exposure to the drugs. That is untrue. Genetic and environmental factors determine who will become addicted. Exposure to an opioid — or any drug of abuse — is necessary for the expression of the disease, but by itself it is insufficient to cause it.

Most Americans are exposed to opioid medication at some point in their lives. In fact, the average person experiences a total of nine surgical and non-surgical procedures in a lifetime. An opioid analgesic is administered during most of these procedures and is often prescribed afterward for pain control. The lifetime risk for developing an opioid addiction is less than one percent of the population.

If exposure alone were responsible for addiction, then the 50 million Americans who undergo an operation every year, or those who undergo nine procedures in a lifetime, would develop an addiction.

Commonly, people who investigate and discuss opioid overdoses believe the deaths are exclusively due to the disease of addiction. But here again, they are mistaken.

An estimated 30 percent or more of overdoses are believed to be suicides. Why do some people choose to intentionally overdose? One driver is the despair that develops from inadequately treated pain. People in pain are almost three times as likely as the general population to commit suicide. They often use drugs rather than violent acts to end their lives.

In addition, efforts to curb opioid prescribing have pushed many people to the streets to purchase illegal and more lethal drugs. This is even true for people without a substance abuse disorder who are seeking pain relief.

Despite a more than 30 percent decline in opioid prescriptions over the past decade, there has been a continued surge in drug overdose deaths. We are seeing a shift in the reasons why people are dying from overdoses. Since 2018, the number of overdose deaths from methamphetamines has exceeded the number of deaths from prescription opioids. This underscores the fact that the problem is less about the supply of opioids and more about the demand for relief of psychological or physical pain.

Clearly, America’s drug crisis involves more than just the overprescribing of opioids — and this helps explain why interventions to reduce prescriptions have not succeeded. Understanding the actual causes of the problem may help us find real solutions. It also would change the focus from people in pain who find more benefit than harm in opioids to those who clearly are at risk of harm from them.   

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

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

Questioning the New Cannabinoids

By Roger Chriss, PNN Columnist

A new cannabinoid similar to THC was announced last month in Scientific Reports. Dubbed tetrahydrocannabiphorol, or THCP for short, it is being hailed as a “breakthrough discovery” that is 30 times stronger than THC, the chemical compound in cannabis that causes euphoria.

Discovered by a group of Italian researchers, THCP has been shown to have a high affinity for the cannabinoid receptor (CB1) in the brain. Cinzia Citti from the Institute of Nanotechnology told Medical Cannabis Network that THCP likely has pain relieving effects, but pharmacological studies are needed to confirm it.

“Once all pharmacological profile of THCP has been established, I can imagine that THCP-rich cannabis varieties will be developed in the future for specific pathologies,” Citti said.

THCP’s chemical structure makes it nearly optimal for activity at the CB1 receptor. Studies on mice showed that THCP has psychoactive effects at low doses, but research is required to confirm how strongly THCP acts on the human brain.

‘Potential Game Changer’

There is already great enthusiasm for THCP, as well as cannabidiphorol (CBDP), another newly identified cannabinoid compound.

Vice states that “it’s possible these chemicals could treat certain conditions better than their counterparts,” THC and CBD.

Leafly went even further, predicting the new cannabinoids could have “immense therapeutic implications,” with THCP being a “potential game changer.”

Looking beyond the media hype, there appears to be no critical consideration of what a cannabinoid 30 times more potent than THC might mean. THC Is known to have significant negative effects on the human body. The National Institute on Drug Abuse lists side effects such as impaired breathing, increased heart rate, and mental effects such as hallucinations, paranoia and schizophrenia.

Moreover, THC is addictive. Health Canada reports that 1 out of 10 people who use cannabis will develop an addiction. The addiction odds increase to 1 out of 2 for people who use cannabis daily.

In other words, is THCP going to be 30 times more additive than THC? Will it cause 30 times more cognitive impairment? A 30-fold increase in ER visits and hospital admissions?

If THCP acts much more strongly on the CB1 receptor, then it may not really be a good thing for cannabis users or public health. These questions may seem absurd, but potent synthetic cannabinoids like K2/Spice have been a public health concern for many years. THCP may also have unknown side effects.

The difference between THC and CBD comes down to one chemical bond, but their respective effects are quite different. The apparent similarities between THCP and THC cannot be used to draw conclusions about effects in humans, good or bad.  

At present, very little is known about THCP. As Live Science points out, "while THC offers some medicinal effects, including pain and nausea relief, no one knows if THCP has these qualities."

It would be nice if even just one media outlet had mentioned the THCP could have some of the same problems that THC does, and at far lower concentrations.

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

The Truth About Chronic Pain

By Dr. Rachel Zoffness, PNN Columnist

I’ve never been an athlete, but I’ve always loved exercising because of how it makes me feel. One beautiful spring day, I went for a run. On the way downhill, I was stopped by a sudden pain in my knee. When I woke the next morning, I couldn’t step out of bed without burning pain radiating from my feet, up my leg and into my hip.

I was couch-bound for the better part of a year. I saw countless doctors, was prescribed many medications, and would’ve done anything to stop the pain. That was the beginning of a decade-long journey with chronic pain.

I’ve dedicated my life to understanding pain, and not just because of that injury.

I’m a pain psychologist and assistant clinical professor at UC San Francisco School of Medicine, where I teach pain neuroscience to medical residents. I also founded a private practice dedicated to people living with chronic pain.

One of my earliest patients was a teenager. He’d been bedridden with multiple medical diagnoses for four years, seen 12 physicians and tried 40 medications. But nothing worked.

Not surprisingly, he was depressed and anxious. He had no life, no friends and no hope.

DR. RACHEL ZOFFNESS

As a pain psychologist, I use cognitive behavioral therapy (CBT) as one of my primary treatment tools, so we started a CBT-for-pain program. In addition to other strategies, it involved “pacing” or resuming select activities one small step at a time.

It was hard work, but little by little, he got healthier. As his functioning and mood improved, his pain did, too. Within 6 months he resumed school and rejoined his soccer team. His pain wasn’t gone – but it was significantly reduced and he knew how to manage it. He says pain will never control his life again.

Many of us have noticed this link between how we feel emotionally and how we feel physically. That’s because pain is never purely physical. This is confirmed by neuroscience research indicating that pain is produced by multiple parts of the brain, including the cerebral cortex (responsible for thoughts), prefrontal cortex (which regulates attentional processes), and the limbic system – your brain’s emotion center.

Dialing Back Pain

Imagine that you have a “pain dial” in your central nervous system that controls pain intensity. The function of this dial is to protect you from danger or harm. It can be turned up or turned down by many factors, including:

1. Stress and anxiety

2. Mood

3. Attention (what you’re focusing on)

When you’re feeling stressed and anxious – your thoughts are worried, your muscles are tense and tight, and the pain volume is turned up.  

When your mood is low, you’re miserable and depressed, and your brain similarly amplifies pain volume. 

This is also true when your attention is focused on pain. When you’ve stopped going to work, seeing friends and engaging in hobbies, your prefrontal cortex (which controls attention) sends a message to your pain dial, turning it way up. 

However, the opposite is also true. 

When stress and anxiety are low – your body is relaxed, your thoughts are calm and you’re feeling safe. Your cerebral cortex and limbic system send messages to your pain dial, lowering the volume so that pain feels less bad. 

When your mood is high, your thoughts are positive, you’re feeling happy and you’re engaged in pleasurable activities. Your brain determines that little protection is needed, so pain volume is reduced. 

And finally, when you’re distracted – you’re absorbed in activities, like watching funny movies with friends. The pain dial is turned down, so pain is less bad. 

In summary, when you’re relaxed, happy, distracted, and feeling safe, your pain volume is lower. The pain is still there -- it hasn’t magically disappeared -- but it’s quieter. Softer. Less. 

The truth about chronic pain is this: Your thoughts, beliefs, emotions and attention can all adjust pain volume. 

This does not mean that pain is “all in your head.” It isn’t. Your pain is real, as real as mine, and no one should ever tell us otherwise. It does mean that there are many ways to change pain. One is medication. Multiple medications have been shown to effectively turn down the pain dial.  

There are other methods for lowering pain volume, too. CBT, mindfulness and biofeedback are three biobehavioral approaches to pain management that research suggests can be helpful. They aren’t magic cures and they take time. But if you’ve never tried to manage your pain with these techniques, consider them. They’ve helped me immensely on my chronic pain journey. 

When I was learning about mindfulness, I remember thinking, “What could mindfulness possibly have to do with physical pain?”  

And then something fascinating happened.  

During the first year of my practice, my pain changed. It didn’t go away entirely and I wasn’t cured. But the pain changed. It became less intense, less frequent, less distracting, and got less in the way of the rest of my life. 

Rachel Zoffness, PhD, is a pain psychologist and assistant clinical professor at the UCSF School of Medicine. Rachel serves on the Steering Committee of the American Association of Pain Psychology, where she founded the Pediatric Division. She is the author of The Chronic Pain and Illness Workbook for Teens. You can find Rachel on Twitter @DrZoffness.  

Back to the Future in Pain Care

By Carol Levy, PNN Columnist

The start of another year started me thinking about my 42-year fight against trigeminal neuralgia (TN) and how things have changed in its diagnosis and treatment.

I was 26 when the pain started. It came out of the blue, like a lightning bolt inside the skin of my left temple. It was horrendous, lasting maybe 20 seconds or so, and then it subsided. After a clinic doctor diagnosed it as trigeminal neuralgia, I was repeatedly told it could not be TN because I did not meet the criteria for the diagnosis.

At that time, it was very simple: TN pain had to be in a specific anatomical area. Mine was. The pain also had to be spontaneously triggered by touch, no matter how slight. Mine was. But you had to be at least 60 years old or, if you had multiple sclerosis, over age 40 to have TN. I was only 26. Too young.

So, regardless of the pain being in the right place and occurring in the proper fashion, it had to be something else, although they had no idea what that might be. It took more than a year before someone finally recognized it as trigeminal neuralgia, despite my youth.

Over the years the definition and diagnostic criteria for TN have changed. There are now two recognized types of TN:

• Trigeminal Neuralgia 1: Intense, stabbing pain attacks affecting the mouth, cheek, nose, and/or other areas on one side of the face.

• Trigeminal Neuralgia 2: Less intense but constant dull aching or burning pain.

You can have both types of TN. I have constant pain, as well as spontaneous and triggered pain. Neither type includes an age factor. This makes it easier for a young person to be diagnosed with TN today. 

Changing Treatments

Not only has the definition changed, but so too have the treatment options. When mine started, there were less anti-convulsants to try, the first line of treatment for TN. Now there are many new medications, including botulinin (Botox) injections.  

Over the years I had many operations, some of them no longer in use. Now there are gamma knife and cyber procedures, things not even a glimmer in someone's eye when I was first diagnosed or being treated. 

Reflex Sympathetic Dystrophy (RSD) is another pain disorder which has come a long way. Even the name was changed, from RSD to CRPS (Complex Regional Pain Syndrome).

In 1981, I entered a residential pain program. There were only 8 of us. One was named Joanne, who had very weird, unbelievable symptoms and complaints, so weird even the doctor had trouble believing her.

Joanne said she had tremendous pain throughout her body, and trouble controlling her bowels and bladder. She insisted it all started right after a statue had fallen on her foot. It sounded fanciful at best. She seemed a perfect example of pain being psychological. 

If that happened today, Joanne’s complaints might be taken more seriously and she could be diagnosed with CRPS. But at that time, it was a disorder that did not appear on anyone's radar. 

Since then many new medications and treatment options have been devised or added to the armamentarium against CRPS, such as ketamine infusions, intrathecal pain pumps, hyperbaric oxygen therapy and bisphosphonates. The same is true for many of the other pain disorders. Research is ongoing, new medications and surgeries are being developed. 

We often lament that nothing new is being done for us. Where is the research? Where is the treatment that will finally give us relief? 

It can be hard to see sometimes where we have been vs. where we are now, much less where we may be going. But history shows that more progress is being made than most of us may realize. And that is a good thing. We have to look to the past to see not only how far we have come, but how much farther we still have to go.   

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.