Lessons Learned from 20 Years of Chronic Pain

By Mia Maysack, PNN Columnist

This year, I'm honoring the 20th anniversary of how long my head has been hurting.

I was fortunate to learn at a young age that we're not invincible. Slipping into a coma, two brain surgeries, and years of rehab resulting from a near death experience with bacterial meningitis has a way of humbling a person.  

Healing isn't linear and has thus far proved to be a lifelong process for me. I've got no reason to believe I've reached an apex of wellness.   

Simply put, the journey has had many ups and downs. Relationships with others were shattered because my own life was in pieces. I didn't know how to effectively communicate with others about my health, because I wasn't fully aware about my own limits. This ultimately overtook my career goals and almost claimed my sanity.

Maybe I lost my mind long ago. If you see it, let me know!

Of course, it hurts to bid adieu to people I still care about, but I've had to evolve to put my own self-care first. Drama isn't a thing I'm physically well enough to take on, as it greatly depletes me. I've had to cultivate avoidance of it by all means necessary.  

I've grown to no longer feel a desire to excuse or justify the accommodations I need. And I know that anyone who doesn't honor what my personal needs are couldn't be what's best for me. So though distance can hurt, it isn't always a loss. 

Anything that's forced -- be it with another person or within our own selves – is a signal to me. An instant message from somewhere deep. It’s an inner wisdom we all carry, always there to be heard and listened to. 

We may not know what exactly is happening in regards to our pain or illness, nor comprehend why it exists, where it came from or what we can do about it. But when we slow down to the point of fully acknowledging ourselves lovingly, there's power, freedom and a sense of peace in that.  

Of course, it's not just about us. How we conduct ourselves has an impact on every one and thing around us. If nothing else, this pandemic has undeniably demonstrated that much. Nothing about life, especially living under strenuous circumstances, is easy. It requires us to keep our heads up and continue growing.  

This requires many things -- diet, sleep, exercise and lifestyle balance, to name a few. One of the more recent revolutions of mine has been that I do not need to follow suit on what anybody else -- providers included -- thinks is best for me. It's a team effort and any form of support is vital and definitely a blessing. But any person or thing outside of ourselves can only take us so far. Our loved ones, friends and our healthcare teams need open communication about that.  

Not everyone has a cure or fix, but our circumstances can improve with a more helpful attitude. We can tune in and reflect on what aligns with where we're at on the path of figuring all this out – and then proceed according to that. We're still just as valuable as we've always been, just in different ways. 

A Greater Purpose

Until I chose to no longer allow this to just happen to me but affirmed myself in active boss mode over what repeatedly tests my will to live, there's a co-existence that's possible -- an intimacy with yourself, a language spoken within, that's solely between you and your vessel. 

It's not glamorous. It’s isolating and lonely. But the truth is that we're not alone, and your reading of this column thus far is a demonstration of that.

What I needed in life didn't exist, so I dedicated myself to creating ways to keep the parts of myself alive that matter most. I'm devoted to never giving up because there's a greater purpose to be found in our challenges. 

There are always new breakthroughs. We cannot know if something could help if we don't keep our minds and hearts open to it by coming to terms with our losses. Without a doubt, that’s the hardest thing I've ever done in my life, other than survive every day.

Addressing tough moments doesn't mean that's the end of them. But letting these conditions dictate the overall quality of my days became intolerable and unacceptable. Pain is a part of us – but not who we are. I’ve evolved to accept the past for what it was, the present as it is, and the future for whatever it'll be.  

Partake in self-pity moments when you must, but don't unpack and live there. It is okay, normal and natural to breakdown or even completely fall apart. Start over. Life is always evolving and it requires the same from us.

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.

How Poppy Seed Muffins Could Get You Flagged by a Drug Test

By Pat Anson, PNN Editor

If you’re a patient who is prescribed opioid pain medication, you may have been warned not to eat poppy seed muffins or bagels before a drug test.

The tiny black seeds may contain trace amounts of morphine and codeine, which can be detected in a drug screen and wreak havoc with your medical care. A positive test could result in your doctor taking you off opioid medication or even dropping you as a patient.

Is the poppy seed warning accurate or just an urban myth? A group of researchers wanted to find out, so they ran a series of tests to measure opiate levels in commercially available poppy seeds. They washed, steamed and heated the seeds to see how that changed concentrations of three opium alkaloids: morphine, codeine and thebaine.

Washing or soaking the poppy seeds in water significantly reduced the presence of all three opium alkaloids. So did heating the seeds at a temperature of 392 F for at least 40 minutes.

However, baking the seeds in a muffin for 16 minutes at 392 F didn't significantly change the opium alkaloids, possibly because the internal and external temperatures of the muffins reached only 211 F and 277 F, respectively.

“Baking had no significant effect on concentrations of opium alkaloids. Overall, these results indicate that opium alkaloids may not be significantly affected by baking or steam application and that poppy seeds may require water washing or extended thermal treatment to promote reduction of these compounds,” said lead author Benjamin Redan, PhD, a research chemist who works in the FDA’s Institute for Food Safety and Health.

Redan says poppy seed muffins would have to be baked for at least two hours just to reduce morphine and codeine levels by 50 percent – which is not a recipe for passing a drug test or for baking tasty muffins.

The findings were recently published in the American Chemical Society’s Journal of Agricultural and Food Chemistry.

Poppy Seed Tea

Researchers and law enforcement agencies have been paying more attention to the lowly poppy seed because of anecdotal reports of people using the seeds to brew a potent tea that can be used for pain relief or to get high.

Late last year, Drug Enforcement Administration classified unwashed poppy seeds as a Schedule II controlled substance. While the poppy plant has long been classified as an illegal substance, the unwashed seeds were exempt because they were not perceived as a problem until recently.

“Individuals wishing to extract the opium alkaloid content from unwashed poppy seeds, use the seeds to create a tea, which contains sufficient amounts of alkaloids to produce psychoactive effects,” the DEA said. “Unwashed poppy seeds are a danger to the user and their abuse may result in unpredictable outcomes including death.”

The Internet is filled with stories about people experimenting with poppy seed tea. One alternative health website even has a recipe for making poppy seed tea that comes with a stark warning.

“Unfortunately, the abuse of or having insufficient knowledge about this tea has led to a few fatal incidences,” the recipe warns.

Tiny Implant Could Revolutionize Stimulators

Pat Anson, PNN Editor

Engineers at Rice University have created a tiny implant – about the size of a grain of rice -- that can electrically stimulate the brain and central nervous system without using a battery or wired power supply.

The magnetically powered implant generates the same kind of high-frequency signals as much larger battery-powered stimulators used to treat chronic pain, epilepsy, Parkinson's disease and other medical conditions. It could be implanted almost anywhere in the body in a minimally invasive procedure.

Researchers demonstrated the viability of the implants by placing them beneath the skin of laboratory rodents that were fully awake and free to roam about their enclosures. The rodents preferred to be in portions of the enclosures where a magnetic field activated the stimulator, which provided a small voltage to the reward center of their brains.

"Doing that proof-of-principle demonstration is really important, because it's a huge technological leap to go from a benchtop demonstration to something that might be actually useful for treating people," said Jacob Robinson, PhD, a member of the Rice Neuroengineering Initiative and corresponding author of a study published in the journal Neuron.

"Our results suggest that using magnetoelectric materials for wireless power delivery is more than a novel idea. These materials are excellent candidates for clinical-grade, wireless bioelectronics."

The implant has a thin film of magnetoelectric material that converts magnetic energy into electricity. Lead author Amanda Singer created the film by joining together two layers of very different materials.

The first layer, a magnetostrictive foil of iron, boron, silicon and carbon, vibrates at a molecular level when it's placed in a magnetic field. The second layer, a piezoelectric crystal, converts mechanical stress directly into an electric voltage.

This method avoids the drawbacks of radio waves, ultrasound, light and other wireless methods to power stimulators, which can interfere with living tissue or produce harmful amounts of heat.

RICE UNIVERSITY

"The magnetic field generates stress in the magnetostrictive material," Singer explained. "It doesn't make the material get visibly bigger and smaller, but it generates acoustic waves and some of those are at a resonant frequency that creates a particular mode we use called an acoustic resonant mode."

Acoustic resonance in magnetostrictive materials is what causes large electrical transformers to audibly hum.

"A major piece of engineering that Amanda solved was creating the circuitry to modulate that activity at a lower frequency that the cells would respond to," Robinson said. "It's similar to the way AM radio works. You have these very high-frequency waves, but they're modulated at a low frequency that you can hear."

Tiny implants capable of modulating the brain and central nervous system could have wide-ranging implications. They could replace battery-powered implants used to treat epilepsy and reduce tremors in patients with Parkinson's disease. Neural stimulation could also be useful for treating depression, obsessive-compulsive disorders and chronic intractable pain.

Singer said creating a signal that could stimulate neurons without harming them was a challenge, as was miniaturization.

"When we first submitted this paper, we didn't have the miniature implanted version," she said. "When we got the reviews back after that first submission, the comments were like, 'OK, you say you can make it small. So, make it small.’

"So, we spent another a year or so making it small and showing that it really works. That was probably the biggest hurdle. Making small devices that worked was difficult, at first."

In all, the study took more than five years to complete, largely because Singer had to make virtually everything from scratch.

I’m a POW in the Opioid Crisis

By Douglas Hughes, Guest Columnist

If you can hear the muffled sound of champagne being uncorked by lawmakers viewing my image, it’s no mistake. They have ignored my cries for help for a number of years, along with those of millions of other intractable pain sufferers.

I am 69 years old and have lost over forty pounds since August 2018. I am 6’2” and weigh 139 pounds, less than I did in eighth grade.

I cannot get anyone to care for me medically. I eat all the time, something else is wrong.  I had to change my primary care provider just to get a simple eye exam, the kind you do in a hallway. When tested, I could only see the top "E" with one eye. I had rapid-advancing cataracts.  

My picture is reality!  We have been so stigmatized and basic medical treatment denied to us, while the opioid pain therapies which kept us alive were abruptly taken away to profit from our deaths. 

Does my image impart distress? If not, you may hold the fortitude and inhumanity required for public office today. In West Virginia, elected officials still believe the opioid crisis is a due to a single drug -- prescription opioids -- diverted from a single source: pain clinics.

DOUGLAS HUGHES

We have done nothing morally or legally wrong to deserve the horrendous lack of basic civility that you would show a wretched animal. I frequently relate my desire to be treated as a dog. Not in humor, but for the compassion that a dog would get if it was suffering like I am. 

The federal government has gone to extraordinary measures to brutalize the functionally disabled for personal enrichment and fiduciary windfall for programs like Medicare, Veterans Affairs, Workers Compensation, Medicaid, private retirements plans and others.

The largest windfall is to health insurance companies, which reap immense savings by curtailing the lingering lives of their most costly beneficiaries, the elderly and disabled. 

You May Be Next

Since the Vietnam War, there have been many advances in emergency medicine. More people are saved each year, yet left in constant pain. In the blink of an eye, you could become one. A car wreck, botched surgery or numerous health conditions can leave you with chronic or intractable pain.  

My image is a warning. I didn’t become the person you see until the government intervened in the pain treatment I was getting for 25 years. This was under the guise of a well-orchestrated effort by many state and federal agencies. 

The Drug Enforcement Administration has been the most prolific in this coordinated, decades-long effort.  In 2005, I witnessed them investigate and close a pain clinic where I was a patient.

My doctor was at the top of his field, a diagnostic virtuoso of complicated pain conditions.  He himself suffered from one pain condition of which I was aware.  No drug seeker could ever pass themselves off as a legitimate pain sufferer in his practice, yet he was harassed and forced to close because of assumptions of opioid overprescribing asserted by medically untrained law enforcement.      

It was my great fortune to have him diagnose the crushing injury in my torso and hips after twelve years of suffering.  He and two other pain specialists said I was “one of the most miserable cases” they had ever seen.

The loss of this and other outstanding professionals has repercussions even today. New doctors being trained are misled to believe the doctor-patient relationship is nonexistent. It was sacrificed to special interest greed and the conflagration of a drug crisis that will never end until that relationship is restored.

How easily has the public been misled to believe all physicians became irresponsible at the same time by treating pain conditions incorrectly with opioids? Now we have law enforcement dictating what pain treatment is appropriate. It is nonsensical at best and unimaginably inhumane at its heart.

My picture is the culmination of this government-standardized pain treatment and its consequences.  If heed is not taken immediately by the medical profession, lawmakers and society at large, you may be next to choose between suicide or emaciation.

Killing functionally disabled intractable pain sufferers like me, or non-responsive elderly in hospitals, will not stop opioid addiction, drug diversion or overdose deaths. It will however leave you a skeleton, praying for help like a prisoner of war.

Only the hearts of tyrants and fools see anything redeeming in that.

Douglas Hughes is a disabled coal miner and retired environmental permit writer in West Virginia. He recently ended his candidacy for governor due to health issues.

PNN invites other readers to share their stories. Send them to editor@painnewsnetwork.org.

Young Adults, Latinos and Low-Income Households Feeling Psychological Distress

By Pat Anson, PNN Editor

The COVID-19 pandemic appears to be taking a heavy toll on America’s mental health. A new survey conducted by researchers at the Johns Hopkins Bloomberg School of Public Health found that psychological distress among U.S. adults tripled — from 3.9 percent in 2018 to 13.6 percent in April 2020.

Psychological distress was even more acute among young adults aged 18­–29. Nearly one in four (24%) had symptoms of anxiety and depression.

Distress was also high among Latino adults (18.3%) and adults living in low-income households (19.3%) making less than $35,000 a year.

Nearly 1,500 adults were surveyed about their mental health between April 7 to April 13, when much of the country was still under a coronavirus lockdown. Researchers say their findings, recently published in JAMA, suggest the U.S. will face a wave of mental health problems even after the pandemic ends.

“We need to prepare for higher rates of mental illness among U.S. adults post-COVID,” said lead author Emma McGinty, PhD, associate professor in the Bloomberg School’s Department of Health Policy and Management. “The study suggests that the distress experienced during COVID-19 may transfer to longer-term psychiatric disorders requiring clinical care.

“It is especially important to identify mental illness treatment needs and connect people to services, with a focus on groups with high psychological distress including young adults, adults in low-income households, and Hispanics.”

Older adults seem to be handling the emotional challenges of the pandemic better, with only 7.3% of Americans aged 55 and older reporting psychological distress in April. So are people in households making over $75,000 a year. Only about 8% of Americans in that category reported distress.

Surprisingly, the survey found only a slight increase in feelings of loneliness, from 11 percent in 2018 to 13.8 percent in 2020, suggesting that loneliness is not driving the psychological distress people are feeling.

Zoloft Shortage

Increased demand for antidepressants during the pandemic has led to shortages of Zoloft and its generic version, sertraline. The Food and Drug Administration recently added the antidepressant to its list of drug shortages. Drug manufacturers say they “cannot support monthly demand” for sertraline, in part because of low supplies of its active ingredient. The shortages are expected to continue for the next few months.   

Sertraline is a selective serotonin reuptake inhibitor (SSRI) and the most commonly prescribed antidepressant. Over 49 million prescriptions for sertraline were written in 2018, according to the IQVIA Institute, making it the 11th most dispensed drug in the United States.

In the early stages of the pandemic, pharmacy benefit manager Express Scripts reported a spike in prescriptions for anti-anxiety medications such as Xanax and Valium, as well as antidepressants and anti-insomnia drugs.

Pain, Protests and Prejudice

By Dr. Lynn Webster, PNN Columnist

The Salt Lake Tribune recently published a story that distressed me. It said that Scott Senjo, a criminal justice associate professor at Weber State University in Utah, tweeted threats at people who were peacefully protesting the alleged murder of George Floyd.

Senjo’s incendiary comments are hard to accept, particularly in light of the criminal charges filed against the four Minneapolis police officers involved in Floyd’s death. The peaceful protestors that he threatened in his tweets were innocent of any crime.

Senjo was placed on probation and then resigned. He has since apologized for his tweets. But apologies don't correct the harm he intended.

People in pain can probably relate very personally to current events. They have been protesting online and in peaceful demonstrations for years about poor treatment and restricted access to pain medication, but their voices haven't been heard. Their suffering hasn't been sufficiently acknowledged or addressed. Their frustration and anger are similar in many ways to the feelings of those who are protesting George Floyd's death.  

Our First Amendment Right to Protest

Amazingly, peaceful protests can trigger anger in some people. Like Senjo, they are sometimes willing to suggest harming or even killing protestors.

It is even worse when political leaders specifically suggest using military force to "dominate" protestors. These perverted, authoritarian attitudes are attempts to deny Americans their First Amendment right to peacefully "assemble, and to petition the government for a redress of grievances."

George Floyd's death from asphyxiation by police officers lit a match to a tinder box of anger and frustration built up over centuries. The outrage has become national, and even international, in scope.

At the outset, the protests focused on anger about the injustice and police brutality levied against people of color. As the peaceful protests intensified, however, the actions became diffused by people who were committing acts of violence and unlawfulness. Some engaged in looting, arson and other crimes. These destructive actions nearly drowned out the voices of peaceful protesters who were trying to be heard.

Even Nonviolent Protestors May Be Demonized

Critics such as Scott Senjo may draw no distinction between the two groups, and may simply think of all protestors as criminals, radicals and revolutionaries. For some, it may not matter whether protests are peaceful or not -- anyone who opposes authority, in their opinion, should be met with a heavy-handed response.

You may remember the story of Francine Hughes, who stood trial for murdering her husband as he slept. The book and movie based on her experiences are called The Burning Bed. Hughes suffered years of domestic abuse, and the police refused to help her. Finally, she felt her survival depended on ending her abuser's life. Her violent protest of the brutality she suffered was wrong, but it was understandable. Outrage at oppression and the will to survive can elicit primal behaviors.

Today’s protestors are reacting to oppression, injustice, violence and racism that have never been adequately addressed. We, as a society, have continued to tolerate a criminal justice system that subjugates those who often lack the resources to defend themselves. It is easy to point fingers at abusive members of law enforcement without questioning how we, ourselves, contribute to the situation with our own behaviors.

It is a fallacy to think that even peaceful protests by people of color are accepted. Former NFL quarterback Colin Kaepernick kneeled during the national anthem in 2016 to protest police violence and social injustice. President Trump deemed his action to be disrespectful to our flag and heritage, and suggested that the NFL fire anyone who kneels during the national anthem.

Many Americans applauded President Trump's remarks. Indeed, Kaepernick apparently was blackballed from the NFL after his peaceful protest, and his football career effectively ended.

Peaceful protests of police brutality are, metaphorically, another form of kneeling during the national anthem. It is not disrespectful to kneel in protest, and it is not wrong to ask that those in power treat all people with dignity and respect. On the contrary: peaceful protesting shows respect for our flag and our First Amendment rights.

An Example of How We Can Heal

I want to close by sharing an example of the Randolph, Massachusetts Police Department. The photo below was taken a few minutes after a planned protest was scheduled to begin.

The protest in Randolph that day was peaceful. Perhaps that is at least partly because of how members of the police force greeted the protestors.

The Randolph Police Department evidently trusted that anyone who participated in a protest would do so in a spirit of peace and respect, and they felt a responsibility to respond in kind. They also wanted to demonstrate their solidarity with a statement made by Randolph Chief of Police William Pace:

“The Randolph Police Department will always be committed to providing the best possible service to the community in a dignified and equitable fashion. Officers are trained to approach every situation with respect, compassion and fairness, and these are all traits that were not present in the treatment of George Floyd.”

Thank you, Chief Pace, and your police force, for your service and your compassion. This is where our country's healing begins.

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

Tennant Foundation Launches Intractable Pain Research and Education Project

By Pat Anson, PNN Editor

One of the pioneers of pain management in the United States is hoping to draw more attention to intractable pain and how it differs from chronic pain. While chronic pain lasts for 90 days or more, intractable pain can persist for years, decades or even a lifetime. Many doctors fail to distinguish between the two, which leads to gaps in diagnosis and treatment.

“The pain field has been woefully negligent about this. They talk about symptomatic treatment of what to do to relieve chronic pain, but in order to deal with intractable pain syndrome you’ve got to treat the underlying cause,” says Dr. Forest Tennant, whose foundation has just released a new report called “The Intractable Pain Syndrome: A Call for Recognition and Prevention.”

“We’ve worked on it for quite some time with the goal of having every patient, doctor, nurse and family understand it. And to try and bring things out in language that is understandable by everybody.”

“This was a labor of love for all of us, born from a sincere desire to bring recognition, treatment and prevention to this devastating syndrome,” says co-author Ingrid Hollis, whose son was treated by Tennant for Arachnoiditis and Ehlers-Danlos Syndrome. “We have learned so much through the years, and I believe there is much that can be done to prevent intractable pain syndrome from developing and progressing when it occurs.”

“One of the reasons we’re doing this is to call for early recognition and vigorous treatment,” Tennant told PNN. “Someone who has this for two, five or twenty years, you can’t expect much reversal. But those people who have these conditions for six months or a year, they have a great ability to reverse a great deal of this. The earlier the treatment, the better the outcome.”

Left untreated, Tennant says intractable pain syndrome (IPS) can lead to chronic inflammation in the central nervous system that is difficult to reverse.  The inflammation not only causes constant pain, it leads to loss of brain tissue and creates dysfunction in the neurologic, cardiovascular, hormone and immune systems.  

“We’ve known for centuries that a painful injury will create what amounts to electricity. And too much electricity causes inflammation and inflammation causes tissue destruction,” says Tennant. “Intractable pain syndrome does change their basic physiology by virtue of altering physically the neurotransmitter systems that are in the brain and spinal cord. That is really the difference. And this is very objective. It’s measurable. It’s visible. It’s clear when its present.”

Tennant says these “pockets” of inflammation can be seen on MRI’s and brain scans. Someone suffering from simple chronic pain won’t have them, but people with intractable pain will.

There are five basic conditions that can cause IPS:

1. Arachnoiditis, a chronic inflammation of spinal nerves

2. Genetic connective tissue/collagen disorders such as Ehlers-Danlos Syndrome (EDS)

3. Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS)

4. Brain injuries caused by strokes or head trauma

5. Serious end-stage osteoarthritis of the spine, hips, knees or feet.

Other possible causes of IPS are porphyria, sickle cell disease, Lyme disease, interstitial cystitis, and some rare genetic disorders.   

IPS Can Be Reversed

Long recognized as incurable, Tennant says intractable pain can be reversed if diagnosed and treated early. He has pioneered some new treatments for IPS, including hormone supplements, physical therapy and better nutrition.

“Our project hopes to educate people about what they can do to reverse a lot of this,” Tennant told PNN. “Step number one is you’ve got to have vigorous treatment of the underlying cause of pain. The arachnoiditis has to be treated. The arthritis has to be treated. The RSD has to be treated. In other words, vigorous treatment of the underlying condition.

“Step number two, there are specific things they can do to slow down the inflammation inside the central nervous system. We know the body makes hormones inside the brain and spinal cord that can reduce the inflammation inside the central nervous system and regrow some of the tissue that’s been lost. People say you can’t do that, but oh yes, you can. There are studies that show this and we see this clinically.”

“I strongly believe that Dr. Tennant's concept of how intractable pain develops and progresses is absolutely correct.  His work in identifying the causes, developing diagnostic criteria, and figuring out a treatment protocol provides what doctors need to know to help people with intractable pain,” says co-author Kristen Ogden, whose husband Louis was treated by Tennant for a complex autoimmune condition.

“Louis' treatment with Dr. Tennant allowed him to improve so much in so many ways. Very effective pain control, greatly improved function and the best quality of life he ever had as an adult.  I am sure that very few people have any idea at all how much a seriously ill pain patient can improve and even regain lost function and capabilities if they have the right medical regimen that meets their needs.”

Tennant retired from clinical practice in 2018, the year after his home and office were raided by the DEA as part of an investigation into his opioid prescribing. No charges were ever filed against him. While Tennant no longer sees patients, he is continuing his research into the treatment of IPS – which notably downplays the use of opioids.

“The answer to opioid use is treating the syndrome rather than just giving symptomatic relief. Opioids are symptomatic drugs,” explains Tennant. “What we’re saying is, identify this and try to treat the condition. Don’t just throw a bunch of symptomatic antidepressants, opioids and other interventions at it. Start trying to look at it physiologically and pathologically, and treat it like we do other syndromes.”    

To learn more about the Tennant Foundation’s Intractable Pain Syndrome Research and Education Project, click here. 

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Study Critical of Hydroxychloroquine Withdrawn by Medical Journal

By Pat Anson, PNN Editor

One of the world’s most respected medical journals has issued a rare retraction, essentially disowning a controversial study published last month that claimed the use of hydroxychloroquine and chloroquine for treating COVID-19 had no benefit for hospitalized coronavirus patients.

The Lancet issued the retraction after receiving a letter from the study’s authors saying they were unable to complete an independent audit of the data underpinning their analysis. As a result, the authors concluded they “can no longer vouch for the veracity of the primary data sources.”

The study looked at data from nearly 15,000 patients with COVID-19 who received the antimalarial drugs hydroxychloroquine or chloroquine. They were compared to a control group of over 81,000 patients who did not take the drugs. The study included patients being treated at 671 hospitals in North America, Europe, Asia, Africa, South America and Australia.

The study concluded that chloroquine and hydroxychloroquine significantly increased the risk of death for COVID-19 patients, particularly when taken with an antibiotic.

However, soon after publication, critics began questioning the legitimacy of data used in the study, pointing to inconsistencies such as five Australian hospitals reporting more coronavirus deaths than had been found on the entire continent.

In a letter to The Lancet, study authors Mandeep Mehra, Frank Ruschitzka, and Amit Patel said they could not get full access to the data and could not conduct an independent peer-review of their own research:

“After publication of our Lancet Article, several concerns were raised with respect to the veracity of the data and analyses conducted by Surgisphere Corporation and its founder and our co-author, Sapan Desai, in our publication. We launched an independent third-party peer review of Surgisphere with the consent of Sapan Desai to evaluate the origination of the database elements, to confirm the completeness of the database, and to replicate the analyses presented in the paper.

Our independent peer reviewers informed us that Surgisphere would not transfer the full dataset, client contracts, and the full ISO audit report to their servers for analysis as such transfer would violate client agreements and confidentiality requirements. As such, our reviewers were not able to conduct an independent and private peer review and therefore notified us of their withdrawal from the peer-review process.

We always aspire to perform our research in accordance with the highest ethical and professional guidelines. We can never forget the responsibility we have as researchers to scrupulously ensure that we rely on data sources that adhere to our high standards. Based on this development, we can no longer vouch for the veracity of the primary data sources. Due to this unfortunate development, the authors request that the paper be retracted.

We all entered this collaboration to contribute in good faith and at a time of great need during the COVID-19 pandemic. We deeply apologise to you, the editors, and the journal readership for any embarrassment or inconvenience that this may have caused.”

The Lancet’s retraction is likely to lead to more claims and conspiracy theories that the coronavirus has been “politicized” by mainstream medicine and left-leaning media to embarrass President Trump.

In recent months, the president and conservative media have touted hydroxychloquine as a possible "game changer" in the treatment of COVID-19. Trump took the drug as a preventative treatment last month after two White House staff members tested positive for coronavirus. A statement from the president’s doctor yesterday indicated he suffered no ill effects.

“I’m not going to get hurt by it. It’s been around for 40 years,” Trump said last month. “For malaria, for lupus, for other things. I take it. Front-line workers take it. A lot of doctors take it."

Hydroxychloroquine is only approved for the treatment of autoimmune diseases such as lupus and rheumatoid arthritis. The FDA has warned against using hydroxychloroquine as a treatment for COVID-19 outside of a hospital or clinical study because of “serious and potentially life-threatening heart rhythm problems.”

The FDA's Adverse Events Reporting System lists over 10,000 reported cases involving hydroxychloroquine in the past decade, many of them serious or resulting in hospitalizations. Nearly 600 people have died since 2010, including 48 deaths so far this year.

A study published yesterday in The New England Journal of Medicine, found that hydroxychloroquine was no better than a placebo in preventing COVID-19 infections.

Covid-19 Is More Complex Than We Thought

By Roger Chriss, PNN Columnist

Covid-19 initially seemed like a respiratory illness, with symptoms similar to a nasty flu. But it was quickly recognized as more transmissible and deadly, and with the added feature of being novel, meaning that no one had any natural resistance to it.

Now it is becoming clear that Covid-19 is more complex.

Although some people experience a short course of influenza-like symptoms, others also have neurological problems. According to Neurology Advisor, common symptoms associated with COVID-19 include anosmia and dysgeusia -- the impaired ability to smell or taste normally.

In one case study from Italy, reported on by IFL Science, a young woman had a persistent cough and loss of smell as her first symptoms. MRI results showed a “viral brain invasion” that caused inflammation in her olfactory bulb, the part of the brain involved in the sense of smell. Fortunately, the brain inflammation and other symptoms cleared up 28 days later.

A recent study in The BMJ looked at over 20,000 patients hospitalized with Covid-19 in the UK. Researchers found that many had pre-existing conditions, such as chronic cardiac disease (31%), diabetes without complications (21%), and non-asthmatic chronic pulmonary disease (18%).  

Less than half the patients (41%) made it out of the hospital alive, 26% of them died, and the remaining 34% were still in the hospital when data collection ended, so their outcomes remain to be seen. Being male or obese were associated with a higher risk of death, along with underlying health problems.

Notably, being over the age of 50 was substantially more hazardous than any other comorbidity – meaning the inflection point for risk is 50 years of age, not the oft-cited 65 seen in the U.S.  

Younger People Affected

Washington State is seeing a rapid rise of Covid-19 in young adults. Early in the outbreak, more than two-thirds of patients were older, but between March 1 and May 3, over a third of new cases (39%) were seen in people aged 20 to 39. It is not clear why this is happening, and deaths remain concentrated among people who are older.

Children may be at greater risk than previously thought. The CDC has recognized multisystem inflammatory syndrome in children as a “rare but serious complication” of Covid-19. The condition causes different body parts to become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, and gastrointestinal organs.

Work to find underlying factors that create this complexity is ongoing. A potential role for the ApoE gene has been identified in work by Biobank. The Guardian reports that people with two variants of the gene, which are associated with heart disease and dementia, had more than double the risk of severe Covid-19.

Two key risk factors identified in the United States are ethnicity and socioeconomic status. According to Johns Hopkins, African Americans and other disadvantaged groups are experiencing infection and death rates that are disproportionately high for their share of the total population.

Work to discover the origins of the coronavirus continues. According to Ars Technica, U.S. researchers conducted a detailed analysis of the coronavirus genomes, and found an evolutionary path connecting them mostly with bats, but also with a key contribution from pangolins, an armadillo-like mammal.

All this points to a complicated future for the pandemic. Risks are spread more broadly across the population and symptoms and clinical course are more varied. At present the best we can do is reduce transmission to stay safe and healthy.

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. 

Most Patients Say Cannabis Effective for Musculoskeletal Pain

By Pat Anson, PNN Editor

The vast majority of people with musculoskeletal pain who have tried medical cannabis say it is an effective pain reliever and over half believe it works better than other pain medications, according to a new study released by the American Academy of Orthopaedic Surgeons.  

Researchers surveyed 629 patients being treated at orthopaedic clinics to see how widely cannabis is being used for chronic muscle and joint pain that can be caused by arthritis, fibromyalgia, osteoporosis and many other conditions.

“Over time, we’ve certainly seen an increase in the use of cannabis to manage musculoskeletal (MSK) pain,” said lead author Timothy Leroux, MD, an orthopaedic surgeon and assistant professor at the University of Toronto.

“There is definite interest to see if cannabis can be used to manage chronic MSK pain, as opposed to other conventional treatments such as anti-inflammatories and opioids. With this study, we wanted to get a lay of the land as to who is using it, what proportion are using and what they perceive the efficacy to be.”

One in five of the patients surveyed said they are currently using or have tried cannabis to manage their MSK pain. Of those, 90% said cannabis was effective, 57% believe it works better than other pain medications, and 40% said it decreased their use of other drugs.

Patients who used cannabis for MSK pain were more likely to have multiple conditions, including depression, back pain, chronic pelvic pain and chronic neck pain. They were also more likely to use muscle relaxants and opioids for pain relief.

The most common form of cannabis used was cannabidiol (39%) and the most common route of ingestion was CBD oil (60%). Over a third of patients said they spent at least $200 per month on cannabis products.

Among the cannabis users, only 26% received a recommendation from a physician. Most said they tried cannabis at the urging of a friend or family member.

“Most doctors, especially orthopaedic surgeons, don’t have prescribing power for cannabis, so there is minimal physician oversight when it comes to cannabis use to manage chronic MSK pain,” said Leroux. “To complicate things, it’s a little bit of a Wild West in the cannabis industry in terms of what you get in a product, namely actual vs. labelled composition, and consistency.

“Another challenge is that we don’t fully know what products, formulations, dosages, and routes of administration are best to manage chronic MSK pain. Given the high rate of use observed in this study and little physician oversight, there’s an impetus for us as a medical community to try to understand what role, if any, cannabis may serve in the management of chronic MSK pain.”

Even among non-users, there was a fair amount of interest in cannabis. Sixty-five percent reported an interest in trying cannabis for MSK pain. Common barriers to using cannabis were stigma and lack of knowledge about its efficacy, doses and routes of administration.

“We tend to associate cannabis with a younger age due to recreational use, but in our study, age was not a significant factor influencing use for the management of chronic MSK pain,” said Leroux. “Patients reported use well into their 80’s, many whom we assumed would want to use more conventional products.

“We’d like to repeat this study in the next few years to see how use and demographics change as people become more comfortable with the idea of cannabis as the norm as well as what role state legalization plays in patients’ attitudes towards its use.”

Nitrous Oxide Safe for Labor Pain, But Few Women Stick With It

By Pat Anson, PNN Editor

A new study is touting an older form of anesthesia for women going through labor pain. Researchers at the University of Colorado College of Nursing say nitrous oxide – commonly known as laughing gas – is a safe and effective option for pain relief.

Their study, published in the Journal of Midwifery & Women's Health, is based on a survey of 463 women who used nitrous oxide (N2O) during labor.

"Nitrous oxide is a useful, safe option for labor analgesia in the United States. And for some laboring mothers, that's all the pain relief they need,” said lead author Priscilla Nodine, PhD, a Certified Nurse-Midwife and Associate Professor with the University of Colorado College of Nursing.

Nitrous oxide was once widely used in American hospitals to relieve labor pain, but it fell out of favor as more Caesarean sections were performed and women opted for epidural injections and spinal blocks, known as neuraxial analgesia.

Some hospitals are now reintroducing nitrous oxide as a safer and less invasive option. The inhaled gas helps reduce anxiety and makes patients less aware of their pain, but does not eliminate it. 

While side effects from nitrous oxide were rare (8%), less than a third of the women studied stuck with it. Sixty nine percent wound up using neuraxial analgesia or opioids during labor. The reason most often cited (96%) for converting from N2O to another therapy was inadequate pain relief.

Women who had previously given birth vaginally were more likely to stick with nitrous oxide, while those who had a Cesarean section were six times more likely to use neuraxial analgesia. The odds of conversion from N2O tripled when labor was induced or augmented with oxytocin, a hormone that helps women bond with the baby and stimulates milk production.

“Understanding predictors of conversion from inhaled nitrous oxide to other forms of analgesia may assist providers in their discussions with women about pain relief options during labor," said Nodine.

The findings are similar to a 2019 study, which found that nearly 70 percent of the women who tried nitrous oxide switched to an epidural or another pain management method.  

Epidurals allow mothers to stay awake and alert throughout delivery. But they are not without risks. A poorly placed needle can damage the spine permanently, as Dawn Gonzalez learned years ago.

“The blind insertion of the epidural during birth is basically playing roulette for spinal damage. Normally birthing mothers are told the only side effect possible during epidurals is a spinal headache that lasts a few days,” said Gonzalez, who developed adhesive arachnoiditis, a chronic and disabling inflammation of her spinal nerves.  

“Every woman deserves to know that when she opts for any kind of invasive spinal anesthesia, the risks are very grave and by far much more common than anybody realizes.”

The American Society of Anesthesiologists has defended the use of epidurals, calling them “one of the most effective, safest and widely used forms of pain management for women in labor.”

Prescriptions for Hydroxychloroquine Surge, But Drop for Hydrocodone

By Pat Anson, PNN Editor

Prescriptions for the antimalarial drugs hydroxychloroquine and chloroquine surged dramatically over the last few months, likely due to their off-label use for treating COVID-19, according to a new analysis published in JAMA. The study also found a significant decline in prescriptions for the opioid painkiller Vicodin and other hydrocodone/acetaminophen combinations.  

Researchers at Brigham and Women's Hospital studied prescription drug data from over 58,000 chain, independent and mail-order pharmacies in the U.S. from February 16 to April 25, and compared them to prescriptions over the same period in 2019.

Prescriptions for hydroxychloroquine and chloroquine spiked in mid-March – rising over 2,000 percent in one week -- soon after President Trump began touting the drugs as a possible treatment for the coronavirus. Brigham researchers estimate there were close to half a million additional prescriptions filled for hydroxychloroquine/chloroquine in 2020 compared to the year before.

SOURCE: JAMA

Hydroxychloroquine is only approved by the Food and Drug Administration to treat autoimmune diseases such as lupus and rheumatoid arthritis. Increased demand for the drug and government stockpiling soon led to spot shortages of hydroxychloroquine.

"There have been indications that hydroxychloroquine (HCQ) prescribing had increased and shortages had been reported, but this study puts a spotlight on the extent to which excess hydroxychloroquine/chloroquine prescriptions were filled nationally," said corresponding author Haider Warraich, MD, an associate physician in the Division of Cardiovascular Medicine at the Brigham.

"This analysis doesn't include patients who were prescribed HCQ in a hospital setting -- this means that patients could have been taking the drugs at home, without supervision or monitoring for side effects."

Last month President Trump took hydroxychloroquine for about two weeks with a doctor’s permission, even though the FDA warned that hydroxychloroquine should not be used as a treatment for COVID-19 outside of a hospital or clinical study because it could aggravate heart problems. The drug has been linked to at least 48 deaths in the U.S. so far this year, according to an FDA database.

On Sunday, the White House announced the U.S. supplied Brazil with 2 million doses of hydroxychloroquine. Brazil reported a record 33,274 new cases of the coronavirus over the weekend. Its death toll now ranks only below the United States, Britain and Italy.

Other Drugs Impacted by Pandemic

Brigham researchers say prescriptions for hydrocodone/acetaminophen fell by nearly 22 percent over the study period. There were also notable declines in prescriptions for the antibiotics amoxicillin and azithromycin, the blood pressure drug lisinopril, and the nerve drug gabapentin. Researchers said there are a variety of reasons why the drugs are being prescribed less often.

“The modest decline for most common long-term therapies after peak could represent reduced contact with prescribing clinicians, restricted access to pharmacies, pharmacist rationing, loss of insurance from unemployment, or replete supplies from early stockpiling,” researchers said. “Steep declines for amoxicillin and azithromycin appeared out of proportion to expected seasonal declines and could represent fewer outpatient prescriptions for upper respiratory tract infection symptoms.”

The pandemic appears to be taking a toll on the nation’s mental health. In the early stages of the outbreak, pharmacy benefit manager Express Scripts reported a surge in prescriptions for anti-anxiety medications such as Xanax and Valium, as well as antidepressants and anti-insomnia drugs.

A recent survey by the Kaiser Family Foundation found that nearly half of Americans said that they or a family member had cancelled or postponed medical care because of the pandemic. About one in every ten said the person’s medical condition worsened as a result of the delayed care.

A Pained Life: What Price Would You Pay for a Cure?

By Carol Levy, PNN Columnist

I recently had my deep brain stimulator removed. The implant made my trigeminal neuralgia pain much worse. As much as I hated the implant for the entire 7 months I had it, I knew I had to give it a try. I was obsessed with finding a cure.

I was looking for something mindless to watch on TV that would help get my mind off the failed implant. I saw a listing for a movie called “PAINLESS.” The name was interesting and so was the plot, about a man unable to feel physical pain:

“Born with a rare condition that leaves him alienated… a man becomes obsessed with finding a cure. A need for normalcy leads him down a dark path, and he must decide if finding a cure is worth paying the price for it.”

For many of us with chronic pain, that is our story too. I was also desperate for a cure.

Because of my very long and involved medical history, my doctor told me I was pretty much out of options. The only choices left were the implant or two risky surgeries.

Now those are the only options left. One surgery is dangerous and with possible complications too great to even consider. The other is essentially a mini-lobotomy that would leave me cognitively impaired.

“You would still have the pain. You just won’t care that you do,” the doctor explained.

Because of my pain, I am about 80% housebound. I have been for decades. The movie character knows this reality of alienation, as I do. Work helps you create a family and network if you don’t have one. No work and staying home most of the time equals alienated and alone.

Like most people, I want to have a “normal” life.  Sometimes the idea of going to the other side, and being “painless” seems like a good thing. And yet, people who can’t feel physical pain have to be even more careful then we do.

We know what triggers our pain and try to avoid those things. Someone who can’t feel any pain has to be on constant lookout that they don’t get injured in any way. They could cut themselves with a knife and not know it. They could get burned touching a hot stove because they can’t feel it.

We are two sides of the same coin. We want to get rid of the pain. The movie character actually longs for the sensation. He even has surgery without anesthesia.

Ultimately, we all have to decide how far will we go in our quest to find a cure. What price are you willing to pay?

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.”

A Tribute to My Father and the Greatest Generation

By Dr. Lynn Webster, PNN Columnist

When I was a little boy, we planted roses, geraniums, chrysanthemums and tulips at the graveside of my grandparents every Memorial Day.

In the beginning, we only had my maternal grandfather’s and paternal grandmother’s graves to decorate. Since they were about 100 miles apart, decorating their graves was a full-day event. It was a ritual that most of the immediate family participated in. Over the years, the number of graves grew and the number of decorators dwindled. 

People have used flowers to decorate graves for thousands of years. It is not clear when or why the practice first started. For my family, adorning graves with flowers was a way to remember and honor the people we loved and missed.

This past Memorial Day weekend, we visited and decorated their graves yet again, just as millions of Americans do to recognize the men and women who have served our country in the military. 

My father, Raymond L. Webster, risked his life serving in the South Pacific during World War II. He is one of those people we recognize on Memorial Day -- and, hopefully, every day -- for his heroism as a Marine, father and grandfather.

RAYMOND L. WEBSTER

We frequently hear that members of the military sacrifice their lives for their country, but that is not the primary reason my father risked his life.

My father was part of what has become known as the “Greatest Generation.” Of course, he was a proud American, but he often said he was willing to give his life for his buddies. He fought for his "brothers," just as the soldiers depicted in the 2001 film, "Band of Brothers." Patriotism was a background element.

My dad did not always know the reasons for his military missions. He spent his time in the Pacific Theater of Operations as part of the military police, serving in the Bismarck Archipelago, Solomon Islands, Guam and Marianas Islands campaigns.

At War with a Pandemic

I'm proud of my dad's commitment to his fellow warriors and the country. He's part of the great American history we must always remember.

Today, we battle a new enemy that is no less difficult than prior foes. We ultimately may win the war against the coronavirus, but we are not meeting each battle with the same resolve that members of the Greatest Generation did. Lack of a national plan and widespread disregard of our scientists’ recommendations suggest we are not meeting this threat the same way we arose to the occasion in previous wars.

Maybe it is because we don’t have the same willingness to sacrifice for our fellow citizens as those who came before us did. I don't know for certain.

But the coronavirus is a formidable foe. It has already caused more American deaths than we suffered in the Vietnam, Afghanistan, and Iraq wars combined.

The Greatest Generation modeled self-sacrifice, and doing the right things for the right reasons. We have the freedoms we enjoy today because of their selfless actions.

We can't know for certain what members of the Greatest Generation would say about our response to the pandemic, because few of them are here to tell us. However, I am certain they would say that we will get through this if we care enough about each other.

We can come out of this as a better, stronger nation. Putting the welfare of others ahead of our own needs worked before. Why wouldn't it work again?

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.

Study: Using Cannabis for Pain Relief Reduces Risk of Opioid Overdose

By Pat Anson, PNN Editor

Illicit drug users who use cannabis for pain relief are less likely to experience an opioid overdose or use heroin, according to a Canadian study recently published in the online journal PLOS ONE.

Researchers at the University of British Columbia (UBC) the BC Centre on Substance Use (BCCSU) interviewed nearly 900 illicit drug users in Vancouver who reported using cannabis between 2016 and 2018. Participants were asked whether they used cannabis to relieve pain, improve sleep, address nausea or for recreation. Most said they used cannabis for a medically therapeutic reason.

"We're seeing more and more in our research that people are using cannabis for therapeutic reasons," says lead author Stephanie Lake, a doctoral candidate at UBC's School of Population and Public Health. "We're also seeing that, for some individuals in our study, this therapeutic use corresponds with either less use of illicit opioids or a reduced risk of overdose."

Participants who used cannabis for pain relief had lower odds of a non-fatal opioid overdose and for injecting heroin daily. Previous research from the BCCSU found that many people at risk of overdose, particularly those living with pain, may be using cannabis to reduce their reliance on illicit opioids.

Another key finding of the study was that therapeutic cannabis users relied on illicit sources for their cannabis supply – even though medical marijuana was fully legalized in Canada in 2013. About half of study participants said that illegal dispensaries were their most important source of cannabis.

"The mounting evidence related to the motivations behind people's cannabis use strongly suggests that improving access to cannabis for therapeutic purposes could help reduce overdose risk associated with illicit opioid use," says M.J. Milloy, PhD, a research scientist at BCCSU who was senior author of the study.

"Authorities should pause their efforts to close unregulated sources of cannabis and eliminate the illicit market until barriers to legal cannabis are addressed, especially during the overdose crisis."

Vancouver was the first major North American city to be hit by a wave of overdoses involving illicit fentanyl, heroin and other street drugs. A public health emergency was declared in British Columbia in 2016. Since then, Vancouver has become a laboratory of sorts for novel ways at addressing addiction, such as providing a “safe supply” of prescription opioids and prescription heroin to illicit drug users.

“Our community and many others across Canada and the United States are experiencing an opioid overdose crisis rooted, in part, in inadequately or inappropriately-managed chronic pain and sparked by widespread exposure to an unregulated illicit opioid supply contaminated with potent opioid analogues,” researchers concluded. “Our finding may also reflect an opioid-sparing effect of cannabis, whereby opioids are not replaced, but the dosage or frequency of opioid required for analgesia is reduced with the use of cannabis.”

Other studies have debunked the idea that medical cannabis reduces opioid use. Two large studies published last year found no evidence that legalizing cannabis reduces prescription opioid use, overdose or mortality.

“We tested this relationship and found no evidence that the passage of medical marijuana laws — even in states with dispensaries — was associated with a decrease in individual opioid use of prescription opioids for nonmedical purposes," researchers found.

A 2018 study suggested that cannabis legalization could actually make the opioid crisis worse, concluding that “cannabis use appears to increase rather than decrease the risk of developing nonmedical prescription opioid use and opioid use disorder.”