The One Unacceptable Thing a Person in Pain Can Do

By Mia Maysack, PNN Columnist 

Someone once asked me, "If there were one thing to educate the public about on how people in pain live, what would it be?"  

My first thought was, “Where should I start?" 

By definition, chronic pain is pain that persists for at least three months despite medication or treatment. The pain may be caused by any number of medical conditions, diseases, trauma or injury.

Some of us live with chronic pain that most “healthy” people can’t begin to relate to. It’s not like your last stomach flu, hangover, stubbed toe or whack on your not-so-funny bone. You’ll quickly get over those.

Consider the possibility of having pain that never ends. You try countless therapies, medications and changes in lifestyle that may help for a short time, but are far from a cure-all. Many of the suggestions you get -- whether asked for or not -- also haven't proven viable.   

Although I'm fortunate to be alive, migraines and cluster headaches caused by a traumatic brain injury have been my daily companions for over two decades. There’s not much I can do to ease my head pain, and I went through many years experimenting with treatments that only made things worse.      

Some scary statistical facts about pain:

• About 20% of American adults – 50.2 million people – have chronic pain, 19.6 million of which have “high-impact” pain that limits their life and work activities 

• Chronic pain raises the risk of many other health problems, including dementia, high blood pressure, insomnia, anxiety and depression

• The average veterinary student in the United States get five times more education hours focused on treating pain in animals than a medical student does in treating humans

• Even though chronic pain is the number one reason for accessing healthcare and the leading cause of disability, only two percent of the National Institute of Health’s budget goes to pain research  

Let's go back to the thought of a sprained ankle, toothache, seasonal cold or a mild burn. Imagine coming across something that actually helped ease that hardship, but having it taken from away suddenly, and then being refused or abandoned as a patient. That’s what many of us with pain have experienced.

In the face of all this, there does come a point when it's our responsibility to raise awareness about pain and to help find solutions that we all desperately want. This requires some effort on our end.  And it's disheartening to encounter people who won't lift a finger to work towards a solution to our own causes. 

Recently I was discussing important legislation with other individuals living with pain, who all said they were personally impacted by the issue. When I proceeded to explain the next steps needed regarding policy, I saw their eyes glaze over. One even whipped out their phone in disinterest, while everyone else seemingly groaned in discontent.  Even in our own community, we don’t always show up for the sake of ourselves or each other.

It goes without saying that not everyone is interested in or even able to travel to Washington DC for a congressional meeting. The same is true for attending rallies, running support groups, or just sharing their story on a public forum. But someone has to. There are things we can do that will help us inch closer toward change and relief for millions. 

Our individual experiences are valuable and whether you live in a state of physical hurt or not, we must begin to care more about one another on a fundamental level.  Pain is ultimately something that'll impact everyone. Why wait for pain to happen to you? Why accept the fact that it already has?  

One of the biggest myths is that there's only certain acceptable ways to advocate for ourselves or each other. In actuality, there's only one unacceptable thing to do. And that is nothing. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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. Mia is the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

FDA Approves Device That Uses Artificial Intelligence to Treat Chronic Pain

By Pat Anson, PNN Editor

The Nevro Corporation says it has won approval from the Food and Drug Administration for an advanced spinal cord stimulator (SCS) that uses artificial intelligence to individualize treatment for each patient.

Nevro says its Senza HFX iQ stimulator “learns from patients” as they use the device and develops customized algorithms for treating chronic back pain, leg pain and pain from diabetic neuropathy.

"HFX iQ is designed to improve the consistency of pain relief and is the only SCS system that truly personalizes care," D. Keith Grossman, Chair and CEO of Nevro, said in news release.

"Pain is variable from patient to patient and over time. Using the big data from our HFX Cloud patient database, our unique HFX Algorithm was developed to identify those programs where patients have been more likely to get relief in the real world.  HFX iQ takes direct input from each patient on their pain and quality of life measures to get smarter over time and recommend program changes.”

Nevro says patients will start with a program most likely to provide pain relief, and then adjusts it over time based on patient input and medical data, such as pain scores, activity levels and changes in use of pain medication. Patients can also adjust their pain relief programs through an app on their smartphones.

Spinal cord stimulators are usually considered the treatment of last resort for people with intractable or severe chronic pain that doesn’t respond to other therapies. The surgically implanted devices emit low levels of electricity that reduce the intensity of pain signals.

Unlike older stimulators, Senza stimulators use electric pulses of 10 kHz, a high frequency that doesn’t create an uncomfortable tingling sensation and delivers more pain relief. Last year the FDA approved Senza stimulators for the treatment of painful diabetic neuropathy, making it the first spinal cord stimulation system approved for that condition. Until then, most SCS devices were only approved for patients with severe back pain.

About 50,000 stimulators are implanted in the U.S. every year, with failure rates for the devices estimated at 25 to 30 percent. Most patients are required to undergo psychological testing and a trial treatment before getting a SCS.

The FDA has come under scrutiny for its regulation of stimulators and other medical devices.  A 2020 report by Public Citizen accused the FDA of “dangerously lax” oversight of stimulators, which were linked to 156,000 injuries and 931 deaths.  The agency responded to the report by sending a letter to healthcare providers reminding them to only implant stimulators after a trial period that demonstrates the device are effective. An FDA review of adverse events involving stimulators found that nearly a third were reports of unsatisfactory pain relief.

Nevro says it will begin a limited release of Senza HFX iQ later this year, with a full market launch in the U.S. in early 2023. Nevro is also seeking approval of HFX iQ in Europe.  

Fibromyalgia: Often Ignored and Poorly Treated

By Victoria Reed, PNN Columnist

Up until about 10 years ago, I had never heard of fibromyalgia. But during a routine medical visit, my doctor recognized symptoms that I described as possibly being signs of fibromyalgia. After an in-depth exam and other testing, a diagnosis of fibromyalgia was made.

Fibromyalgia is a complex disorder which causes widespread musculoskeletal pain, fatigue, sleep and memory issues. Symptoms can begin after a traumatic injury, surgery or infection. It sometimes takes many years to receive a diagnosis, and there is currently no cure.

People like me with autoimmune disorders, such as rheumatoid arthritis or lupus, often suffer from fibromyalgia. It is more common in women than men. The disorder can be accompanied by headaches, irritable bowel syndrome, anxiety and depression. Many fibromyalgia patients also complain of “fibro fog,” which impairs the ability to focus, pay attention and concentrate on mental tasks.

Fibromyalgia seems to run in families. I have multiple family members with the condition, spanning at least three generations. My mother had symptoms of fibromyalgia, but unfortunately never received a diagnosis.

Many experts agree that the key mechanism behind fibromyalgia is central sensitization, which causes the brain and spinal cord to become hypersensitive to pain signals. Pain will be amplified and linger well beyond the initial injury. The hypersensitivity can also affect other senses, leading to discomfort with strong scents or chemicals, bright lights and sounds. Being in loud, crowded spaces can create an overwhelming experience for fibromyalgia sufferers. 

Unfortunately, fibromyalgia is still a somewhat controversial diagnosis, because it is not yet fully understood and its symptoms can overlap with many other conditions. Some people even say that it’s a “garbage can” diagnosis that’s only given when no other one can be made. Many old school doctors believe that fibromyalgia is not a real condition, which is why it can often take years to receive a proper diagnosis.

However, recent research has discovered that there are differences in the brains of fibromyalgia patients. One important discovery is that of neuro-inflammation, which, simply put, is inflammation in certain regions of the brain. This research, documented by PET scans, does confirm inflammatory mechanisms in the brains of fibromyalgia patients and is a major step forward in trying to understand and treat it. It also helps to validate the existence of the condition itself.  

People with fibromyalgia are sometimes not taken seriously by their own doctors and denied appropriate pain management. Many are also denied disability payments as well. I know from experience that the condition can be terribly painful, with deep muscle aches and sore tender spots all over the body.

I have not had success with any of the traditionally prescribed drugs, such as Lyrica (pregabalin), an anticonvulsant that’s also used to treat nerve pain and seizures. While I’ve had some success with a high-quality CBD oil and various CBD creams, it is my prescribed pain medication, in combination with acetaminophen, that gives me the most pain relief.

Unfortunately, some fibromyalgia patients encounter roadblocks in finding a physician who is willing to prescribe pain medication if the only condition they have is fibromyalgia. This definitely needs to change! Fibromyalgia patients are worthy of treatment whether they have other pain conditions or not. The current anti-opioid climate continues to cause patients to suffer needlessly.

If you feel that you may be suffering from fibromyalgia, don’t be afraid to push, push and push for a diagnosis! If your doctor is not willing to help you, look for another doctor and don’t stop until you find one that takes your symptoms seriously. Research all you can on the condition and learn what you can do to help yourself.

Even though it might be difficult to exercise due to the fatigue that fibromyalgia causes, start by adding a little walking to your daily routine, even if it’s just 5 or 10 minutes. Exercise is good for your overall health and well-being, and it can help improve your mood. Being completely sedentary will only make things worse.

Regular massage is sometimes prescribed as well. If you can’t afford a professional massage, you can get a prescription for a therapeutic/medical massage, which will be a little cheaper. You can also purchase one of those self-massage sticks that can be found at sporting goods stores. I have found these things to be helpful to manage my symptoms.

I also suggest joining an online support group. There are many, many people suffering from fibromyalgia, and in these groups you can connect with people around the world, make some new friends, and learn about treatments that work for others.

Living with fibromyalgia is not easy, but it doesn’t have to be a hopeless situation either. If more doctors would take the condition seriously, make a timely diagnosis and provide appropriate treatment, perhaps there would be less suffering for those of us with fibromyalgia.

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

A Voice They Don’t Want to Hear

By Carol Levy, PNN Columnist

“Nothing about us without us.”

I did not know this clarion call was initially a slogan of the disabled community, which wanted a seat at the table when policies were created affecting the disabled. It also pertains to the pain community and our place in the fight against the “war on opioids.”

I am a member of my county's opioid task force. I was invited by a commissioner, an anesthesiologist, who has chronic pain patients. The commission's goal is to find ways to prevent drug abuse, how to treat those who are addicted, and how to fight opioid addiction. 

We had our second meeting a few days ago. In this group, I have become the voice of the pain community, a voice they don't want to hear.

At the first meeting, after hearing about opioids from an emergency room doctor, an EMT, a sheriff, and a recovering addict MD, we broke into smaller groups of 5 or 6 people. I tried to make my voice heard.

“Please, when you speak of addiction starting with painkillers, it needs to be made clear that the people abusing opioids are not the same as those who get legitimate prescriptions for legitimate pain,” I said, adding that studies show we rarely get addicted.

But another woman had a louder voice. Her story was sad, an addicted son who died from an overdose. Every time I tried to speak, she spoke over me. As the meeting progressed, the rest of the group turned to her and very specifically away from me. I was ignored for the rest of the meeting.

At the end, when we were to present our feelings and thoughts about what was needed in the fight against addiction, my voice was absent. 

The second meeting was run the same way. When we broke into our groups, I immediately spoke up. Eyes turned towards me as if to listen, but as soon as I finished my few sentences they turned away. I tried a few times more, louder each time, but was still mostly ignored.  

At one point a woman who runs a recovery house spoke the sentence I abhor: "Many of the addicts start with painkillers...”  

I immediately responded: “There needs to be an asterisk anytime that sentence is spoken. Studies show chronic pain patients rarely get addicted.”  

“I was not referring to those who need them,” she replied. 

“Then you need to add that as a parenthetical, so we don't keep getting swept up as part of the culprits in the war,” I urged.   

She shook her head, said “yeah sure” and went back to "they start with painkillers,” completely ignoring what I had said. 

At the end of the meeting, when we were asked to put on a poster board what we felt needed to be addressed, the leader completely omitted any suggestion that it needs to be made clear the pain community is not part of the problem. 

When it was over, I sought out one of the organizers and told her, “I'm not sure there's a place for me, for the chronic pain community, at this table."

She said she would talk to the county commissioners who had formed the task force and get back to me. No one has. 

I don't know what else to do to get us included. “Nothing without us” in regards to the opioid task force seems to be “nothing about us.” And definitely without 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.” Her blog “The Pained Life” can be found here.

Finding Peace While Fighting Cancer

By Cynthia Toussaint, PNN Columnist

It’s the damnedest thing. Despite this month being my 40-year anniversary with high impact pain, and while I battle an aggressive breast cancer recurrence, people tell me that I look healthy and happy.

Stranger still, I feel more grounded and centered than ever. In fact, I’m down-right peaceful. So much so, when I recently saw my osteopath, she said that I no longer needed her treatment because I was “in the flow.”  

After delving deep into this disconnect, I’ve unearthed the workings that have brought me to this sacred place. And now that I’m here, I plan to protect my peace.

To start, I’ve learned to neutralize platitudes and their associated shame. When people blow by the gravity of my cancer recurrence by assuring me that staying positive will save the day, I politely dismiss their cliché as unhealthy and unrealistic.

There’s no one alive who could face a second round of breast cancer without being mad as hell. That being said, I’ve given myself permission to move through the five stages of grieving – denial, anger, bargaining, depression and acceptance – which has allowed me to come to an authentic level of positivity… and peace.  

Also, I’ve taken control of my cancer care. This is a big deal. After listening to my oncologist’s by-the-book treatment plan, I shared that, while well-intended, I thought his recommendations would kill me.

Instead, he and I sought guidance from trusted sources, and agreed on a plan that was tailored to my individual needs, including the complications that Complex Regional Pain Syndrome present. I won’t lie to you, the treatment is at times brutal. But I’m choosing it, and with control comes peace. 

And there was a miracle.

With the synergy of my current treatment (low dose chemo, immunotherapy infusions and a robust dose of self-care), my tumor quickly dissolved from the size of a ping pong ball to one that can’t be found. Wearing a Cheshire cat grin, my oncologist recently shared that in his 45-year career he’s never seen such a response.

So how did my body do that? Yes, the med cocktail certainly played its part, but I’m convinced that finding peace is my secret sauce to healing.

Besides taking control of my medical care, I’ve become religious about upping my terrain-game for the healthiest body and mind. I’ve switched to a vegan diet with lots of fish, committed to an hour-long workout each morning, get in bed early to promote deep sleep, and have radically reduced my stress by identifying and removing toxic people from my life. These are the self-care strategies we hear of time and again, and for good reason. When practiced, they work! 

Letting Go of Trauma

For more peace, I’ve vastly upped my game by adding a “paths-less-taken” approach.

Like most of us with pain, I suffered much childhood trauma, the foundation of my un-wellness. I’m working diligently on trauma release using various methods, one being forgiveness. Through daily visualization and meditation, I’m practicing the art of letting go of trespasses.

Instead of allowing anger and hurt to turn into psychic stagnation, I acknowledge the negative emotion, thank it for lessons learned, and send it on its way. Forgiveness is a choice, and I’ve decided to free myself from poisonous energy so I can move forward with peace.

I often remind myself that when a person is cruel, it’s not about me, but rather a challenge they’re experiencing on their life path. And when I can, though still a work-in-progress, I light a candle and wish them well.

Most surprising, I recently stumbled upon my biggest trauma-releasing, peace-inducing tool, as I intuitively knew this blast-from-the-past would move my wellness ahead by eons.

Several months ago, I surprised myself by bringing my grandmother, who passed long ago, into my visualizations. Soon other long-gone relatives arrived. Of particular interest was my Aunt Grace, who continues to lead my healing rituals. Grace died a couple decades before I was born, but I’ve always felt a bond so close, I’ve dedicated my life work to her. She is my guide and my angel.

I now understand that our connection comes from sharing similar traumas. We were both the “fixers” of impossibly broken families and both got profoundly ill at 21. Tragically, Grace died from leukemia. Mine was a different death when CRPS ravaged my body.

Through arduous work and by facing hard truths, I now see that, like Grace, most of my ancestors suffered profound trauma, and by sharing their genes, I’ve inherited the injury that binds me to disease. Science calls this epigenetics.

By healing the wounds of my ancestors through rituals, I’m healing myself. Additionally, I’m breaking cyclical familial patterns by not passing along the burden of traumatic energy to those I engage with.

These seemingly “woo woo” rituals appeared novel – hell, I thought I’d invented a breakthrough therapy! That was until I described them to an integrative trauma expert who shared that “Ancestral Healing” is a real thing, scientifically proven and all.

Life is precious. So is our life preserving, life enhancing peace. Whether I’m on my way out now or have 30 more years of kick in me, I’m focusing on protecting this essential resource. 

I’m convinced that most of our pain, physical and emotional, springs from inner tumult driven by deep wounds, many of them handed down. Through intentional work and practice, we can quell that upset and find peace. Then the challenge is to hold our peace sacred, to protect it from internal and external “vampires” that aim to trip it up.

My mom turned 90 last month and is suffering from advanced Alzheimer’s, I believe brought on by trauma. That trauma has passed down to me, seeding a lifetime of illness.

I recently spent time with Mom at her new memory center, and later that day delighted in meeting my newest grand-niece named after this beautiful, generous and loving woman.

I hope that by healing the wounds our ancestors couldn’t, I’ll help this li’l darling have a pain-free, peace-filled life, one she can, in turn, hand down.            

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Nearly Half of Adults Think U.S. Healthcare System Is Failing

By Pat Anson, PNN Editor

Almost half of American adults (44%) give the U.S. healthcare system poor or failing grades, according to a new Gallup survey that found most respondents concerned about rising medical costs and growing healthcare inequality. Overall, the healthcare system was given a barely passing grade of C-minus.

"After years of higher prices, growing inequities, skipping treatments, getting sicker, or borrowing money to pay medical bills, it's no wonder so many Americans view the health system so poorly," said Timothy Lash, President of West Health, a group of healthcare non-profits that commissioned the survey.

The survey of nearly 5,600 Americans in all 50 states was conducted in June, with a nationally representative sample reflecting racial and ethnic backgrounds.

The worst overall grade on the healthcare report card – a D-minus – was given to the cost of care. One in four adults (26%) did not seek treatment due to cost in the last three months; while one in three (35%) are concerned they will be unable to afford healthcare in the next 12 months.  

Healthcare in America Report Card

source: west health-Gallup

The affordability issue is worse for those living with chronic health conditions. About 1 in 5 skipped care to pay for other household expenses, compared to about one in eight of those without chronic conditions.

“When members of my family have needed surgeries or medications [they] have to really consider how much medical debt they’re willing to go into. Our healthcare system forces us to try and make calculations between financial security and health just because of how expensive things are, and that’s even with health insurance, so I can’t imagine if you didn’t have health insurance how fraught that would be,” said survey participant Stef Schloo, 28, who lives in Pennsylvania

“I am single and so all of that falls down on me. And the only thing that would concern me is if I really developed a major health situation or, God forbid, if I was in a major accident or had to have long-term care, that’s a great concern to me,” said Patricia Slough, 67, who lives in Massachusetts.

Quality of care was the only aspect of the healthcare system that received more positive than negative marks, although it was still only able to earn an overall grade of C-plus. Women were less likely to give good grades for quality than men (38% vs. 57%); and Black and Hispanic Americans were also less likely to give a good grade for quality than the general population (36% each vs. 47%).

“You can have some of the best doctors in the world practicing here. I’m not saying that other countries don’t have great doctors, but I think our healthcare professionals can be second to none depending on where you go in America,” said Andrew Kerner, 30, who lives in North Carolina.

Healthcare Access and Equity

The grades for access to care and equitable care also broke down along racial lines. Two-thirds of Black Americans (66%) and Asian Americans (64%) selected a grade of D or F for health equity, which is the ability of every person to get quality care regardless of race and ethnicity. By comparison, Hispanic Americans (55%) and White Americans (53%) gave a poor or failing grade to equity,

Women, Blacks, Hispanics and Asian Americans were also more critical when it came to access to care. More than 40% in each of these groups gave access D’s and F’s, compared to about a third of White Americans and men.

“For the richest country on earth I think we have the most deplorable healthcare system... due to its inequity, mainly due to the way it all depends on how much money somebody has whether they get good healthcare or not,” said Anne Courtney Davis, 71, who lives in Ohio.

The survey also found that most younger and middle-aged adults are worried that Medicare and Social Security will not be available to them when they become eligible. That sentiment cuts across political lines, with 71% of Democrats, 66% of independents and 62% of Republicans worried or extremely worried about not having access to Medicare. When it comes to Social Security, there is even more agreement — 77% of Democrats, 75% of independents and 73% of Republicans are worried it won’t be there for them when they grow older.

Under an 11-point plan by Sen. Rick Scott (R-FL), chair of the National Republican Senatorial Committee, funding for Social Security, Medicare and other so-called entitlements would have to be put to a vote in Congress every five years.

“When I witness these individuals say that Medicare should be renewed every five years, it kind of makes me nervous [it’s] not going to be there for individuals when we get older,” said Nick Lembo, 27, of Indiana. “That’s startling to me because you should want to take care of those who are older than you because eventually... you’re going to be at that age.”

Biden Pardons Thousands Convicted of Marijuana Possession

By Pat Anson, PNN Editor

President Joe Biden is pardoning everyone who has been convicted of simple marijuana possession under federal law and is urging governors to take similar action for those convicted of possession under state laws.

Biden’s blanket pardon will affect over 6,500 people who have been convicted or charged with federal offenses for marijuana possession. If governors join in, it could potentially impact millions of others who have been convicted of possession under state laws and now have criminal records. The pardon does not alter federal or state laws that prohibit marijuana trafficking, marketing and under-age sales.

“Sending people to prison for possessing marijuana has upended too many lives and incarcerated people for conduct that many states no longer prohibit. Criminal records for marijuana possession have also imposed needless barriers to employment, housing, and educational opportunities,” Biden said in a statement. “Just as no one should be in a Federal prison solely due to the possession of marijuana, no one should be in a local jail or state prison for that reason, either.” 

The mass pardon partially fulfills a campaign promise made by Biden during the 2020 election campaign and begins the process of changing marijuana’s status under federal law. Biden said he would ask Attorney General Merrick Garland to “expeditiously” review how marijuana is classified.

Marijuana was classified by the DEA as a Schedule I controlled drug in 1970, on the same level as heroin and LSD, which means it has “no currently accepted medical use.” That classification now makes little sense, with 37 states and the District of Columbia having legalized medical marijuana as a treatment for chronic pain and other health issues.

“We are pleased that today President Biden is following through on this pledge and that he is also encouraging governors to take similar steps to ensure that the tens of millions of Americans with state-level convictions for past marijuana crimes can finally move forward with their lives,” said Erik Altieri, Executive Director of the National Organization for the Reform of Marijuana Laws (NORML).  

Altieri said the DEA should “deschedule” marijuana under the Controlled Substances Act, and not just change its status to a less restrictive Schedule II or III level. Descheduling would amount to full legalization.

“Nearly half of voters now agree that legalizing marijuana ought to be a priority of Congress, and such action can only be taken by descheduling cannabis and repealing it from the US Controlled Substances Act — thereby regulating it in a manner similar to alcohol,” he said.

In 2020, the House passed legislation to decriminalize marijuana at the federal level, but the bill never came to a vote in the Senate, then controlled by Republicans. Legalization would appear unlikely if the 2022 midterm elections result in the GOP taking control of either the House or Senate.

Last week, a House GOP caucus released a “Family Policy Agenda” saying Congress should not legalize marijuana. The report claimed legalization at the state level “led to an explosion of marijuana use among children, which is having a hugely negative impact on their health.”

More Americans are now using marijuana and cannabis-based products to manage their pain than pharmaceutical drugs. A 2021 Harris Poll found that 16% of adults are using cannabis or CBD for pain relief, compared to 8% who use opioid medications and 11% who use non-opioid pain relievers.

Study Finds Non-Opioid Pain Relievers Effective for Arthroscopic Surgery

By Pat Anson, PNN Editor

Patients recovering from minimally invasive shoulder or knee surgery do just as well with non-opioid pain relievers as those who use opioids, according to a new study at McMaster University and Hamilton Health Sciences (HHS) in Canada.

The study, published by the Journal of the American Medical Association (JAMA), looked at 193 outpatients who had arthroscopic surgeries on their knees or shoulders at three hospitals in Hamilton, Ontario.

About half received standard care with opioids for postoperative pain, while the other half received naproxen and acetaminophen for pain, as well as pantoprazole, a medication normally used to treat heartburn and acid reflux. An emergency supply of opioids was available to both groups, if needed, for additional pain relief.

After six weeks, patients in the opioid group had used an average of 72.6 mg of opioids, compared to 8.4 mg in the opioid-sparing group. Two patients in the opioid-sparing group asked for opioid medication after discharge. Researchers say there were no significant differences in pain levels, patient satisfaction or adverse events between the two groups. 

“This study clearly shows that many of these surgical patients can be treated safely without opioid medications in a select population,” said lead author Olufemi Ayeni, MD, a professor of surgery at McMaster and an orthopedic surgeon at HHS. “Furthermore, by reducing the number of opioids prescribed, we can collectively reduce the development of a reservoir of unused medications that can cause harm to many in society.” 

Over the past decade, the number of arthroscopic surgeries has soared in North America. About one million arthroscopies are performed annually in the United States and 100,000 in Canada. Several studies, however, have that found arthroscopic surgeries provide only temporary relief from knee pain and do not improve function long term.

To be clear, there is no comparison between arthroscopies and highly invasive surgical procedures such as heart bypass surgery.  Arthroscopies are a type of “keyhole” surgery in which the surgeon makes a small incision and inserts a tiny camera and instruments to diagnose and repair damaged ligaments or joints. The procedure often takes less than an hour and patients are sent home the same day — so there is less need for pain medication.

A recent analysis of nearly half a million minimally invasive surgeries in the U.S. found that the number of opioid pills prescribed to patients fell by 50% since 2017. Hospitals are increasingly using acetaminophen, non-steroidal anti-inflammatory drugs (NSAIDs), gabapentinoids and other non-opioids for post-operative pain.  

Most Americans are more worried about treating post-operative pain than they are about becoming addicted to opioids. A 2021 Harris poll found that nearly 8 out of 10 U.S. adults believe opioids are sometimes necessary to manage pain after surgery and 60% prefer opioids over OTC pain relievers.

Why Troches Make Medications More Effective

By Dr. Forest Tennant, PNN Columnist

We regularly get emails from people who have gastrointestinal problems or tell us a particular medication is ineffective for them.  Pills and other oral medications are not always the best way to treat Adhesive Arachnoiditis (AA) or its related diseases.

The problem is that the stomach, intestine and liver don’t assimilate and metabolize more than 30 to 50 percent of the swallowed oral dose. Oral medications may also cause gastric irritation or even bleeding, and the drug may require an hour or more to be effective. Persons with AA and Ehlers-Danlos Syndrome (EDS) may have gastrointestinal dysfunction, which can make some oral medications like opioids almost totally ineffective.

If you are experiencing gastrointestinal problems or believe some of your medications are ineffective, we suggest you try using troches (the Greek pronunciation is “tro-key”). Troches are essentially lozenges that contain medication. They are placed in the mouth between the tongue and cheek until the medication dissolves.

The ancient Egyptians made some of the first troches from honey, herbs and spices to treat sore throats. Medicines introduced into the body this way bypass the digestive system and deliver their active ingredients directly into the blood stream through blood vessels under the tongue and in the cheek.

Superior Traits of Troches

Troches are a superior way to administer many of the key medications and hormones required to treat AA, and its related problems of Tarlov cysts and EDS. Some of these medications, like ketamine and oxytocin, are essentially ineffective if swallowed. 

• More potent than swallowed medication 

• Fast acting – within 10 minutes 

• No direct gastrointestinal irritation 

• Can reduce reliance on opioids 

• Avoids injections and suppositories

A troche must be compounded by your local pharmacy.  Every community today has pharmacies that will make or “compound” troches. For better pain relief and control of AA, Tarlov cysts and EDS, we highly recommend that patients and medical practitioners take the advanced step in therapeutics and begin to use troches. 

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

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

New Treatment Offers Hope for Lupus Patients

By Dr. Eric Morand, Monash University, Australia

When real patients have unprecedented positive outcomes to a new treatment, it’s tempting to talk about it as “breakthrough” for medical science. This describes the excitement around a new report from researchers in Germany of a radical new treatment for lupus.

The patients in the study – five people with severe lupus – went into remission following pioneering CAR T-cell treatment, which uses genetically altered cells.

What is lupus, why is this such big news, and what could it mean for other patients and diseases?

Around 5 million people are affected by some form of lupus worldwide. The most common form of lupus is technically known as systemic lupus erythematosus. Though not widespread, it is more common than multiple sclerosis (MS). Both are “autoimmune” diseases where the immune system attacks its owner instead of the germs it is supposed to fight.

MS is an autoimmune disease where the immune system attacks nerve tissue. In contrast, lupus can affect any organ in the body. Treatments for lupus have been so poor for so long that even wealthy and famous people with the disease – like pop star and actor Selena Gomez – have had organ failure resulting in the need for a kidney transplant. A lot of complicating factors have made it hard to improve outcomes for people with the disease.

Firstly, the variety of tissues lupus can affect means no two patients are exactly alike. Diagnosis is hard and often delayed. This also means we researchers have to deal with a lot of complexity as we try to work out what is causing the disease. This clinical variability makes measuring improvement in response to treatment difficult, and many clinical trials have likely failed due to measurement issues.

Second, there is variation between patients in which part of the immune system goes wrong. This means different patients will need different treatments – and we still do not know with certainty how to get this right. But progress is happening fast.

Innate and Adaptive Immunity

The immune system is in two parts, innate and adaptive.

The “innate” immune system responds fast but non-specifically to viruses and other germs that hit the body with a slug of germ-killing inflammatory proteins. The “adaptive” immune system is slower but more precise. It swings into action after the innate immune system and provides long lasting defense against the invading germ.

When you are vaccinated against a disease (such as COVID), the fever and aches you might get in the first day or two is your innate immune system at work. But the long-lasting protection from antibodies is provided by a part of your adaptive immune system, a key part of which is delivered by cells called “B cells”.

In lupus, both parts of the immune system are involved, and both have been successfully used to develop medicines. Earlier this year, the Therapeutic Goods Administration approved anifrolumab, a drug which blocks “interferon”, a crucial protein made by the innate immune system.

Another drug which works on B cells of the adaptive immune system, called belimumab, was approved a few years ago. Unfortunately, neither drug is on Australia’s Pharmaceutical Benefits Scheme yet, so access is extremely limited.

However, we now know that interferon and B cells are both important, and so very strong treatments that almost completely eradicate either could be useful. That is where this potential new treatment comes in.

Already Used to Treat Cancer

Treatments to destroy B cells are used in cancers like lymphoma. The most powerful of these uses CAR-T cells, which train a type of natural cell to be an assassin of the B cell.

CAR-T medicines are highly complex to make, and extremely expensive – but they work.

T cells are collected from the blood, then re-engineered in a special laboratory.

Now, this new report shows targeting B cells using this approach could be effective in lupus too. Building on a first-ever patient treated in this way by the same group a year ago, doctors in Germany created a “homemade” CAR-T treatment and used it in five patients with severe lupus.

Remarkably, all five patients had near complete eradication of disease, allowing them to stop conventional medicines, like steroids, with potentially harmful side effects.

What This Means for Other Patients

So what does it mean for patients in Australia? Well, most centres aren’t able to make their own CAR-T treatments, so delivering this potential treatment will require a commercial approach.

However, it might be quicker to market than other treatments in development as it takes a proven approach into a new disease, rather than being new from the ground up.

One day we might even be able to extend such treatments to other autoimmune diseases, like MS, where B cell-directed treatments have been helpful, as well as in lupus.

This would need to be balanced against risk. Importantly, short term side effects of CAR-T treatment (which include brain and bone marrow problems) can be severe. For this reason, such a treatment would only be used for the most severe cases in which standard treatments have failed, like the patients in the German trial.

Long-term side effects are also unknown at this time, and of course suppressing the immune system so profoundly in the setting of a pandemic is not without major risks.

Formal trials of a commercial CAR-T medicine for lupus are in the advanced planning stages already, and Australia is likely to be front and centre of these due to our lupus expertise and trial-friendly regulatory environment. With all these advances, we can at last tell our patients, and our friends and family with lupus, that there is light at the end of what has been a very long tunnel.

Eric Morand, MD, is a clinical rheumatologist and Head of the School of Clinical Sciences at Monash Health, Monash University in Australia.  Dr. Morand consults with companies involved in lupus drug development, including Novartis and AstraZeneca. He receives funding from Australia’s National Health and Medical Research Council and Lupus Research Alliance US, and is a Director of Rare Voices Australia.

This article originally appeared in The Conversation and is republished with permission.

How Supporters of CDC Opioid Guideline Hijacked Public Hearing

By Pat Anson, PNN Editor

A public hearing on the CDC’s controversial opioid guideline was dominated by anti-opioid activists, who took most of the speaker slots after being tipped off about the hearing by CDC insiders, PNN has learned.   

At issue is a January 28, 2016 public hearing in Atlanta by the CDC’s Board of Scientific Counselors (BSC), an advisory panel that later voted unanimously to recommend the agency’s guideline, which discourages doctors from prescribing opioids for chronic pain. At the time, the CDC was under growing criticism for the secretive process used in drafting the guideline, which allowed for little input from the public, pain specialists and patients.

Faced with a congressional inquiry and accused of “blatant violations” of federal law, CDC postponed release of the guideline, opened a 30-day public comment period, and announced plans for a public hearing. But that hearing was essentially hijacked by anti-opioid activists who were alerted by Dr. Roger Chou, one of the guideline’s co-authors.

PNN has obtained a January 8, 2016 email from Chou to Dr. Andrew Kolodny, Executive Director and founder of PROP (Physicians for Responsible Opioid Prescribing), PROP president Dr. Jane Ballantyne, PROP vice-president Dr. Michael Von Korff, and PROP board member Dr. Gary Franklin. Chou wanted to make sure PROP members and other guideline supporters spoke at the Jan. 28 hearing.

“I was hoping you could help spread the word for folks who are willing and able to help provide some balanced public comments; otherwise much of the public comments are going to be dominated by pharma. The CDC guideline is going to come under a lot of scrutiny by Congress and others so comments coming from credible people would be of great help,” Chou wrote in his email.

“The public comment period at the meeting is 90 minutes long and those who wish to speak must sign up in advance; the slots are first come, first serve, so those who want to do this they will need to sign up quickly as I’ve been told that pharma is already gearing up to take as many slots as they can.”

Kolodny responded quickly to Chou’s email, urging Ballantyne and the other PROP members to sign up as speakers. Although a public notice about the CDC hearing was not officially published in the Federal Register until January 11 -- three days later – the notice was put on “public display” in the Federal Register on Jan. 8, along with a link that allowed speakers to sign up early.

“We need to register ASAP if we hope to get a spot to give oral remarks (which can be done over the phone). I think it’s best for Jane to give remarks for PROP,” Kolodny wrote in an email of his own. “You don’t need to include a full written statement, just mention that you intend to speak in favor of the draft guideline and the need for promoting more cautious opioid use.”

Although the public notice asked that “each organization register one speaker to represent their organization,” PROP wound up having four speakers at the Jan. 28 hearing: Kolodny, Ballantyne, Franklin and Dr. David Juurlink. Franklin registered on Jan. 8, identifying himself as a representative of “Washington State public agencies.” Juurlink signed up as a representative of the “University of Toronto and American College of Medical Toxicology” and Kolodny identified himself as “Chief Medical Officer, Phoenix House Foundation.” Only Ballantyne signed up as representative of PROP.

The four PROP members were joined by over two dozen other guideline supporters, including Gary Mendell, Judy Rummler, Pete Jackson and other anti-opioid activists who have lost children to opioid overdoses. They urged CDC not to change the guideline by “watering it down” or removing dose limits.  

“The CDC guideline is urgently needed. The guideline was very carefully crafted using the best available evidence, expert opinion from a group of individuals with extensive experience of writing practice guidelines, and stakeholder input from a broad and balanced group of stakeholders,” Ballantyne said in her written comments.

“Primary care needs guidance on opioid prescribing that is free of industry bias. The CDC guideline accomplishes this. Evidence shows that the widespread use of opioids for chronic pain is harming more people than it is helping,” said Kolodny, according to minutes of the hearing.

Only four people spoke in opposition to the guideline. One was Howard Techau, a pain patient who pointed out that most overdoses were caused by illicit fentanyl, not pain medication. “Many chronic pain patients are suffering more now due to the (opioid) restrictions that are already in place,” said Techau, according to the hearing minutes.

The hearing ended with BSC chair Dr. Stephen Hargarten thanking the participants for their “extraordinary discussion and input from a variety of perspectives.”

‘Stacking the Deck’

A pain patient who registered for the hearing but was not given a chance to speak was Anne Fuqua. She encouraged dozens of other patients to attend and register as speakers, helping some to fill out their online registration forms. When the hearing ended and none of them were called upon to speak, she remembers feeling the hearing was rigged and stacked against patients

“The whole process felt like such a concerted effort to railroad patients,” Fuqua told PNN. “I remember at the time us saying we felt like it was beyond the realm of chance that they randomly selected the speakers.

“Aside from the 4 PROPers, it just doesn’t seem possible that supporters would have been this successful in flooding the sign-in ahead of everyone else.”

The CDC disputes the notion that anyone at the hearing who was pre-registered was denied an opportunity to speak.

“A total of 37 individuals pre-registered for the meeting and, of those, 30 requested to give oral public comment.  During the 90 minutes allotted for public comment, participants were called on in the order that they registered.  After individuals that had pre-registered were given the opportunity for public comment, public comment was opened to others for the remaining time. One additional person provided public comment at that time,” Courtney Leland, a CDC spokesperson, said in a statement to PNN.

“I don’t understand how they could possibly say only 30 registered to provide public comments. There were so many patients who told me they registered at the time and I registered way more than 30 people myself,” says Fuqua, who provided dozens of donated cell phones to nursing home residents so they could call in.

Others questioned the “first come, first served” process used by CDC to sign-up speakers, which could be easily manipulated by anyone given advance notice.

“The first come-first served method necessarily gives advantages to groups that hire lobbyists to track Federal Register postings, and, apparently, groups that have an inside connection who can alert them to the opportunity,” said Bob Twillman, PhD, former Executive Director of the American Academy of Pain Management. “Individual patients and even patient advocacy organizations are not going to have the resources to find out about these opportunities until the very limited number of slots are filled. CDC needs to seriously re-think this method of filling spots if they do anything like this in the future.”

‘Forward This Announcement to Others’

At least five PROP board members were involved in advising the CDC during the guideline’s development, so it is not clear why they were given yet another chance to express their opinions. Ballantyne and Franklin were members of a key guideline advisory panel known as the Core Expert Group; Dr. David Tauben was on the guideline’s peer review panel; and Kolodny and Juurlink were on a stakeholder review group.

Kolodny has tried to downplay PROP’s role in drafting the opioid guideline, but Chou’s email is direct evidence that there was some degree of collusion.

When asked why he contacted PROP and other organizations to give them an early heads-up about the hearing, Chou said he did so at the request of the CDC. A CDC staffer emailed Chou and other “Partners” involved in the guideline process, urging them to “forward this announcement to others who may be interested in commenting.”

“The information I forwarded to those folks and others was from an email that I received from CDC on January 8 that had been sent out widely to partners/stakeholders. Not sure why there would be any prohibition on sharing that information, which was public,” Chou wrote in an email to PNN.

But the information was not yet public, at least not widely. CDC never sent out a press release about the hearing and the public notice that was in the Federal Register probably wasn’t seen by many people outside of lobbyists.      

“Chou can say all he wants that this justified his efforts to stack the deck, but it also shows CDC was complicit,” says Fuqua.

“The fact that CDC would encourage people to publicize the availability of this speaking opportunity prior to publication in the Federal Register, especially when they were using a first come-first served selection method, is problematic,” said Twillman. 

“It is shameless that Roger Chou gave PROP a head start to prepare. It’s like an author writing their own book reviews,” said Julie Killingworth, a pain patient and independent researcher who helped PNN track the 2016 emails, which were obtained by another journalist through the Freedom of Information Act.  

“PROP members and their cohorts like Chou have proven beyond doubt they will always resort to cheating and lying to promote and profiteer their destructive scientifically faulty agenda. The CDC has unapologetically shacked up with a shadowy lobbying group, endangering the health and well-being of all citizens.”  

As for Chou’s warning that pharma was “gearing up to take as many slots as they can” at the hearing -- not a single representative from the pharmaceutical industry spoke. Pharma did not “dominate” the hearing as Chou predicted, PROP and other guideline supporters did.

Outspoken Critic of Opioids

All of this happened six years ago and may seem like “inside baseball” trivia to people unfamiliar with the CDC and its opioid guideline. But for this reporter and others who have followed the issue for years, it has a familiar ring.

Chou is a prolific researcher who heads the Pacific Northwest Evidence-based Practice Center at Oregon Health & Science University, which over the last five years has received over two billion dollars in research grants from the federal government, much of it spent studying pain management therapies.

Most public health researchers keep a low profile to avoid accusations of bias, but Chou has long been an outspoken critic of opioid prescribing. In a 2019 podcast, for example, Chou said the benefits of opioids were “clinically insignificant” and that the medications are often harmful.

Chou has also collaborated on several prior occasions with PROP. In 2019, he co-authored an op/ed with Ballantyne and PROP board member Dr. Anna Lembke that encourages doctors to consider tapering “every patient receiving long term opioid therapy.”

DR. ROGER CHOU

In 2011, Chou wrote another op/ed with Kolodny and Von Korff, calling for a major overhaul of opioid prescribing guidelines, which were then mostly developed by pain management societies. That major overhaul came in 2016, when the CDC released its own guideline, which was quickly adopted by many states, insurers, physician groups and even law enforcement agencies.

Opioid prescribing fell dramatically as a result, yet drug overdoses rose to record levels, and many pain patients were tapered off opioids or abandoned by doctors who feared prosecution for prescribing the medications. Patients who once led productive lives while on opioids became unable to work, disabled and bedridden. Even the CDC admits the guideline has been harmful to patients and is in need of overhaul.    

Patients may be suffering and overdoses keep rising, yet several members of PROP have done well for themselves. At least six PROP board members have worked for plaintiff law firms involved in opioid litigation, making as much as $850 an hour. Kolodny, by his own admission, was paid up to $500,000 for testifying in one trial.

‘Compromised by Conflicts’

To this day, Chou remains heavily involved with the CDC. He is one of five co-authors drafting a revised and more “flexible” version of the guideline, which is expected for release later this year. He is also now a member of the CDC’s Board of Scientific Counselors. Critics say Chou’s biases and conflicts of interest are excessive and he should be removed from both roles.

“Based on growing evidence from our own research and many credible sources, the CDC inappropriately collaborated with Chou and leaders from the advocacy group PROP, to create and vigorously promote unfocused reductions in opioid prescribing,” says Dr. Chad Kollas, a palliative care physician who co-authored research critical of Chou’s “undisclosed” conflicts and PROP's role in helping to draft the guideline.

“The creation process for the 2016 Guideline lacked transparency and repeatedly violated CDC’s internal rules and policies addressing relevant conflicts of interest, thereby compromising its scientific integrity and its authors’ credibility. While the draft of CDC’s 2022 Clinical Practice Guideline on Prescribing Opioids for Pain seeks to mitigate growing patient harms from the 2016 Guideline, it is difficult to understand why CDC continued to allow Chou, compromised by ongoing conflicts of interest, to lead its effort to improve its failed opioid policy.”

Distrust of the CDC runs deep in the pain community. In a PNN survey of over 2,500 patients, providers and caregivers earlier this year, nearly 96% said they do not trust the agency to handle the revision of the guideline in an unbiased and scientific manner.

This week, an open letter signed by over 35,000 people was delivered by patient advocate Tamera Stewart to the office of Chris Jones, Acting Director of the CDC’s National Center for Injury Prevention and Control. The letter says the 2016 guideline is so deeply flawed and compromised by ethical violations that it should be completely withdrawn and revoked, without any revisions.

Stewart, who is Policy Director for the P3 Alliance, is also asking Congress to investigate the CDC’s alleged violations of federal procedure and scientific methods during the development of the original and revised versions of the guideline.

CDC Director Dr. Rochelle Walensky recently announced plans to reorganize the agency due to mistakes made during its handling of the Covid pandemic, with the goal of improving communication with the public and changing CDC culture. Walensky put three senior CDC officials in charge of a “top-to-bottom review” of the agency.

One of them is Acting Deputy Director Dr. Deb Houry, the former director of the National Center for Injury Prevention and Control, who oversaw the drafting and rollout of the 2016 guideline. Houry will likely be reviewing the work of Dr. Deborah Dowell, who was chief medical officer for the CDC’s Covid Response team. Houry is already very familiar with Dowell, who co-authored both the 2016 guideline and the revised guideline that is awaiting release.  

Did Opioids Take Away Your Pain?

By Richard “Red” Lawhern, PhD

I write to and for pain patients in several medical journals and social media venues.  I’ve been doing this work for over 25 years. A few days ago, on one of those venues, I encountered the question asked in the headline: “Did opioids take away your pain?”

What follows is my answer.  

I come to this question from the perspective of a published healthcare writer and caregiver to a chronic neuropathic face pain patient. I weekly interact with thousands of patients in social media and via email distribution lists. Thus I “see” many types of pain and many lives impacted by pain.

Pain is the symptom that most often brings patients to a doctor's office. About 50 to 100 million U.S. citizens are affected by pain that significantly affects their quality of life and requires medical treatment.  In 2018, nearly one in five U.S. adults received a prescription for opioids. Prescription rates have dropped dramatically since then, potentially leaving millions of patients under-treated.

From deep study, I am convinced that opioid pain relievers are safe and effective for the great majority of people in whom they are medically managed by a trained and licensed clinician (doctor, physician assistant, nurse practitioner, etc.).

A small percentage of pain patients — estimated by some writers at 0.6% and others as high as 3% — are vulnerable to substance abuse and addiction. However, the numbers of medication abusers appear to be relatively constant, and are not affected by increased or decreased prescribing rates. This suggests that genetic factors might be involved in addiction, but medical literature isn’t conclusive on this issue. Other “causes” of addiction clearly contribute, such as social isolation, hopelessness, unemployment, and protracted untreated pain. 

Depression and anxiety almost certainly play significant roles in both addiction and suffering due to chronic pain. I see this demonstrated repeatedly in thousands of person-to-person contacts on social media.  I believe aggressive evaluation and treatment for depression is a necessary element for effective pain treatment.

Opioids are not needed by all pain patients. And some pain patients are either very slow or very fast metabolizers of opioids due to their genetics – causing a wide variation in the minimum effective dose between individuals.  Others may develop tolerance over time, requiring higher doses to obtain the same pain relief.

For patients managed over long periods on high doses, physical dependence (different from addiction), may develop and they may have withdrawal symptoms if they are tapered off treatment too rapidly. I see no consistent evidence for any effect that can be called “opioid induced hyperalgesia,” a theory that opioids can make pain worse.

Opioids create variable side effects — constipation, sleepiness, brain fog, nausea or low sexual libido.  These side effects can be managed in many people. And for patients who don’t find a balance, one opioid can be tapered down while a different opioid is titrated up. 

Unfortunately, many physicians seem to be unaware of the highly individual responses to these medications.  If a patient cannot tolerate one opioid and pain is severe enough to warrant using this class of medications, then other opioids can be tried.

There is no one-size-fits-all effective dose or safe dose in this class of medicines. I have talked with patients who get substantial pain reduction (rarely total pain relief) from minimal daily doses of 20 morphine milligram equivalent (MME). I’ve also talked with patients who benefited from a dose as high as 2,000 MME, while experiencing few side effects.  There is published literature in case reports pertaining to this widespread range of doses.

This background leads to a central observation:  the default procedure in long term treatment of pain is to first try non-opioids (primarily NSAIDS, sometimes anti-seizure meds for neuropathy); then to try relatively weak opioids like tramadol; and finally to try stronger opioids like hydrocodone or fentanyl patches. This procedure has been known for over 30 years as the World Health Organization’s “Pain Ladder.”

For all drug treatments, additional non-drug support therapy is appropriate.  By this, I mean patient and caregiver support groups, counseling, massage, physical therapy, acupuncture, cognitive behavioral therapy or interventional medicine. Given that such measures rarely improve pain more than marginally, they are not “preferable” to opioids. They can augment but not replace analgesic medication. 

For all opioid therapies, I believe the appropriate medical procedure is to taper up gradually from low doses, while observing and managing intended outcomes and unintended side effects, until a dose level is found that helps the patient manage their pain without creating dangerous side effects.  When this approach is used — even in patients who also deal with substance abuse issues — we see long-term improvements in patient quality of life. 

By contrast, it is now widely understood that forced tapering of patients to lower opioid doses or “cold turkey” withdrawal can be a direct cause of medical crises and sometimes patient suicide.  Patient desertion is never ethically or medically justifiable.

Used with appropriate oversight by a licensed physician, opioids are both safe and effective.  Addiction or substance abuse are rare in medically managed patients.  There is also no relationship between rates of prescribing versus hospital admissions or overdose related mortality. The continuing and widely shouted “association” between doctor-prescribed opioids and substance abuse is a false narrative that has enormously damaged patients and clinicians alike.

The original and draft revision of the 2016 CDC opioid guideline is fatally flawed by anti-opioid political agendas and outright fraudulent junk science. In my view, these guidelines must be publicly repudiated and withdrawn without replacement. All state guidelines referenced to the CDC must likewise be revised or withdrawn.

It is time to remove law enforcement from doctors’ offices, and return the practice of pain medicine to those with actual training and hands-on experience working with people in pain. 

Richard “Red” Lawhern, PhD, is a subject matter expert in public policy for regulation of prescription opioids and of clinicians who employ them on behalf of patients. Dr. Lawhern is a regular contributor to Pain News Network.

Medical Cannabis Helps Pain Patients Stop or Reduce Use of Opioids

By Pat Anson, PNN Editor

A large new survey of medical marijuana users found that many who have chronic pain were able to reduce or even stop their use of opioid pain medication. The survey also found that pain patients reported less pain and better physical and social functioning once they started using medical cannabis.

Researchers at Emerald Coast Research and Florida State University College of Medicine surveyed 2,183 people recruited from marijuana dispensaries in Florida. Participants had a range of health problems, including chronic pain, anxiety, depression, insomnia and post-traumatic stress disorder (PTSD).  Most were using medical cannabis daily.

Answers to the 66-question online survey revealed that nine out of ten participants found medical cannabis to be very or extremely helpful in treating their medical conditions.

Most (61%) reported using opioid pain medication prior to medical cannabis. Of those, 79 percent reported either stopping (42%) or reducing (37%) their use of prescription opioids. A small number were also able to stop using psychiatric medications for anxiety, depression and PTSD.

“The majority of Florida medical cannabis users surveyed described medical cannabis as helpful and important to their overall quality of life. Notably, a large percentage of patients reported improvements in the areas of physical functioning, social functioning, and bodily pain after beginning medical cannabis,” wrote lead author Carolyn Pritchett, PhD, founder of Emerald Coast Research.

“We also found a substantial number of patients reduced the amount of OBPM (opioid-based pain medications) used after gaining access to legalized medical cannabis, with some patients specifically describing improved functioning in daily life as a result.”

The survey findings, published in the journal Substance Use and Misuse, lend credence to previous studies suggesting that legalization of cannabis leads to fewer prescriptions for opioids and other medications.

A recent study by researchers at Cornell University found that legalization of recreational marijuana in 11 states significantly reduced prescribing for Medicaid patients for a broad range of medications used to treat pain depression, anxiety, seizures and other health conditions.

A 2021 study of chronic pain patients being treated at medical cannabis clinics also found that most were able to stop or reduce their use of opioids. Almost half (48%) reported a significant decrease in pain, and most said they had better quality of life (87%) and better physical function (80%) while using medical cannabis.

A 2021 Harris Poll found that twice as many Americans are using cannabis or CBD to manage their pain than opioid medication.

Medical Gaslighting of Woman for Being of 'Childbearing Age' Goes Viral

By Madora Pennington, PNN Columnist

After seeing a neurologist earlier this month for cluster headaches, Tara Rule’s doctor walked her to the front desk. She thanked him. Then, in her car, she burst into tears. Instead of treating her pain, the doctor turned the appointment into a lecture about a hypothetical pregnancy that she didn't want. He had made her feel so horrible, she wanted to die.

“I can’t keep living in world where it is a game to them,” she said to herself.

Feeling hopeless and alone, Rule pulled out her cellphone and, tears streaming down her face, recorded a video recounting what had just happened and how she felt about it.

It is rare to actually see the raw, visceral reaction to medical gaslighting, and how it affects someone’s self-worth and mental health. Many patients leave such appointments doubting themselves, often becoming unwilling to seek medical care as the medical traumas add up.

Rule, 31, is already on disability from a lifetime of complex medical problems, including Ehlers-Danlos Syndrome (EDS), a connective tissue disorder.

When she realized her appointment at a Glen Falls, New York hospital was going sideways, she reached into her bag and began an audio recording with her cellphone. New York allows single party consent to recording, so she didn't need to have the doctor’s permission.

Rule was trying to keep it together, despite her intense pain from debilitating headaches. She wanted the recording so she could sort out what happened later. She wanted to make sure her PTSD from past medical trauma was not triggering her, possibly causing her to misunderstand the doctor.

TARA RULE

In the recording, Rule’s neurologist said he would not give her a certain medication to treat her headache. His reason? She could get pregnant and that particular drug — which he did not name — can cause birth defects. So he doesn't prescribe it to women of "childbearing age."

Rule pushed back, pointing out she is already on a medication for an autoimmune condition that can cause birth defects and miscarriages. And because EDS is a genetic disorder, she does not want to have a child and risk passing it on. Plus, a pregnancy could be harmful for her health.

Instead of making the appointment about Rule's pain and her need for treatment, she says the doctor asked her intrusive questions about her sex life. He disregarded the medical information she provided and patronizingly suggested she might change her mind if she were pregnant. He also insisted her sexual partner would have to consent to her being treated with the unnamed drug.

Rule posted her anguished video on TikTok, and it soon went viral. She's received countless messages from others who have been through similar encounters. While it made her feel less alone, it saddened Rule deeply to learn how many people have stories like hers. The media took notice with articles on Jezebel and in the Albany Times Union.

Severe headaches and cranio-cervical pain are commonly seen in people with EDS, an inherited failure of the body to produce strong collagen. Rule has suffered from migraines since she got a concussion at age eight. Her cluster headaches started in 2016.

“They are a whole different beast,” she told me. “The pain is indescribable. It doesn’t let up. It won’t go away.” Rule says she is a happy person who is not suicidal, but pain like that makes you wish you weren’t alive.

Rather than treat the suffering patient in front of him, the neurologist prioritized a hypothetical situation, in which Rule's birth control fails and she winds up pregnant. For him, this fantasy scenario was more important than giving her the best medical option for pain relief.

Rule complained to the hospital, which apologized and began an investigation. She also created a petition to end doctors' ability to deny treatment to women because they might get pregnant. So far, over 25,000 people have signed it, making it one of the most popular petitions on Change.org.

“As a living, breathing human being who exists, I feel it is absurd that doctors who are expected to provide the best, most effective care and treatments to their patients are able to deny effective treatments due to the potential for birth defects in patients of child bearing age who are not currently pregnant,” she wrote in the petition. 

The week after her botched meeting with the neurologist, Rule found herself in throes of horrendous head pain and took herself to urgent care. She was receiving an IV and oxygen when a group of doctors and security personnel marched into her room. She panicked, thinking of when she was told she had lesions on her brain. Were these people coming to give her bad news like that?

No, the staff was not here to provide medical services. They had come to discharge her. The hospital Rule had complained to apparently called other clinics in the area about her. The urgent care personnel accused her of livestreaming the appointment with her neurologist, which she did not. Nonetheless, they wanted her out immediately. She tried to give the desk her new insurance information as she left, but the staff had closed the window and simply stared at her.

“Shouldn’t they be putting that doctor on leave rather than track my social media and call hospitals? It’s scary,” she told PNN.

Now Rule is afraid to seek medical care. Most of the facilities in her area are owned by that hospital system. Her primary care doctor is part of it. She is not sure if any of them will see her.

“I’m on disability. I have no money. Am I going to have to move?” she wonders.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

Justin Brown: A CRPS Story of Hope

By Miles Ryan Fisher

When Justin Brown took his first steps at the age of 40, his parents were overcome with joy. Only, it wasn’t the same joy that they’d experienced when he’d taken his first baby steps.  No, this joy came with great pain — the kind of pain that comes with watching one’s child lose nearly half his life to a debilitating condition called Complex Regional Pain Syndrome, also known as “the suicide disease.”

In 2006, just as Justin prepared to enter the working world as a Penn State graduate, he started losing weight. He began regurgitating his meals, vomiting most of whatever he ate. Over time, he grew gaunt. His face sunk and his cheekbones protruded. His skin wrapped around his body until he looked emaciated.

Doctors didn’t have answers. When Justin reached the point that he couldn’t hold down any food, they inserted a J-tube — a feeding tube — in him so that food could bypass his stomach. But it wasn’t his stomach that was the problem. It was the parasite they hadn’t tested for — the one dwelling in his intestine right where the tube was inserted. When they removed the J-tube, they accidentally left a part of it in him.

When Justin awoke from surgery, he awoke to something even more unbearable. Something hellish. The operation triggered a pain that spread through his entire body and left him incapacitated, even after the parasite and tube remnant were removed. At the age of 26, Justin no longer had the strength to walk, not even to the bathroom.

Since 2007, he lay in a hospital bed in the middle of his parents’ living room in Fort Washington, Pennsylvania, his arms at his sides, his head always facing the same direction. In order to subdue the pain that incapacitates him, Justin takes a daily mixture of heavy pain medication, including narcotics.

It took many years until Justin and his family found a doctor who offered an accurate diagnosis: Complex Regional Pain Syndrome or CRPS. Only, the doctor didn’t call it that. Back then, the condition was known as Reflex Sympathetic Dystrophy or RSD.  

CRPS/RSD happens when an injury — as minor as a broken finger or as major as surgery — triggers a pain so severe that it is, according to the McGill Pain Index, worse than than amputation. The pain typically remains in the region of the injury, usually involving a limb. But in Justin’s case, it spread through his entire body.

“A lot of people feel like their skin or their nerves are burning, but for me it feels like my bones are being crushed,” Justin says. “If I took my worst pain before CRPS, that would be like a 1 out of 10 compared to my pain now. You really can’t describe it.”

The pain that he’s bravely battled for 17 years has been excruciating and constant. With no end. And no cure.

“It’s there 24/7, and you don’t know when it’s going to go away or if it’s going to go away,” Justin says. “But I had two choices. One was to completely quit. And the other was to keep going and hope that it’ll get better.”

Finding Hope

But now, Justin is finally getting part of his life back through a form of non-allopathic (without drugs or surgery) treatment offered at the Spero Clinic in Fayetteville, Arkansas.

The clinic, which has over 40 employees and treats hundreds of patients every year, was founded in 2012 by Dr. Katinka van der Merwe. Born in South Africa, van der Merwe immigrated to the United States in 1994 and earned her Doctor of Chiropractic degree with the intent of using it to treat individuals who suffer from CRPS and other chronic pain conditions. .

Her clinic’s approach involves treating the vagus nerve, which is the longest and most complex of the body’s 12 cranial nerves. Individuals who suffer from chronic neurologic disorders often have an underactive vagus nerve, which causes inflammation that is either localized or, as in Justin’s case, envelops the entire body. It’s this inflammation that can cause excruciating pain.

“My philosophy and belief is that the body is incredibly intelligent and can heal from the inside out,” van der Merwe says. “People don’t come here to get a diagnosis and medication — they come here to have their bodies rehabilitated.”

The clinic approaches pain treatment in a holistic and noninvasive way, using a variety of therapies and tools involving electrical, physical and auditory/visual/sensory stimulation. It’s the clinic’s range of therapies that helps correct the nervous system and – hopefully -- puts the patient’s pain in remission.

“It’s a completely different approach to everything that I’ve tried so far,” Justin says. This has included the most radical of forms, such as being placed in a ketamine-induced coma in Mexico and brought out of it with the hope that his nerves would essentially reset. Some CRPS patients have found relief with ketamine infusions, but it didn’t work for Justin.

It was last March that Justin began treatment at the Spero Clinic. As soon as the first week ended, Justin experienced progress. It began with his ability to move his hands. Then the next week, he stood up. On the third week, he walked for the first time in 15 years.

Every week after that has brought similar victories — small to a healthy person, but momentous for Justin. Regaining his ability to drink a Gatorade. Regaining his ability to curl two-pound weights. Regaining his ability to wear clothing that fits him, rather than clothing so loose as to not press against his body and cause him a great deal of pain.

“Before I got here, the most I could take were fifteen steps,” Justin says. “And they weren’t good steps. I’d just drag my feet on the ground. Now I walk from my hotel room down a couple hallways, through the center of the hotel, and outside.”

Every incremental gain helps Justin continue to grind. Unlike most patients, who require two or three months of treatment, Justin will need at least half a year because of how severe his CRPS is.

Fundraising Help

The cost of every week of treatment — about $3,000 — is typically not covered by insurance, which does not make it any easier on Justin or his family. If anyone knows this, it’s Philip Robert, one of the Spero Clinic’s CRPS patients in 2016.

Robert spent ten weeks at the clinic and found his recovery so miraculous that he was inspired to form the Burning Limb Foundation, a non-profit whose mission is to raise funds to provide financial assistance to people with CRPS, primarily for treatment at the Spero Clinic. What makes the foundation different from most other non-profits is that 100% of the donations it receives are applied to treatment costs. And unlike other fundraising platforms like GoFundMe, donors are then able to write it off as a charitable gift on their tax returns.

“The idea is to get (CRPS patients) started — get them seed money — so that they can then do a fundraising campaign in the nonprofit world,” Robert says. “We provide a platform in which families can utilize their resources—their network of friends and family—who may be willing to give a little bit more.”

It’s through the Burning Limb Foundation that Justin has received much-needed financial support from family, friends and even people who have never met him but want to play a role in his recovery.

It’s that recovery that Justin realizes is so important, not only to live a life free of pain, but also to inspire others like him who suffer from CRPS. While not cured of the disease, he hopes his remission can bring hope to others.

“If it can work for me, it can work for anybody,” Justin says. “It’s not guaranteed to work for everybody, but it can work for anybody.” 

Miles Ryan Fisher is the Assistant Director of the Building Trades National Medical Screening Program and also serves on the advisory board for Columbia Lighthouse for the Blind. His articles have appeared in the Washington Post, Philadelphia Inquirer, Washingtonian Magazine, Motherly, and Go World Travel.