Where is CDC’s Guidance About Its Opioid Guideline?

By Carol Levy, PNN Columnist

By happenstance, I recently came across the CDC's 2022 revised opioid prescribing guideline. Too many doctors and states saw the agency’s original 2016 guideline as being written in stone -- not the voluntary set of recommendations they were intended to be.

To their credit, the CDC tried to address that misconception in its updated guideline:

“Recommendations are voluntary and are intended to support, not supplant, individualized, person-centered care. Flexibility to meet the care needs and the clinical circumstances of a specific patient is paramount.”

The CDC also acknowledged the damage done by its 2016 guideline, when many pain patients were forcibly tapered or cutoff from opioids, regardless of their diagnosis or condition. 

Some patients were abandoned by doctors who no longer wanted to risk going to prison for prescribing opioids. Other physicians retired or closed their offices, sometimes without warning. And several states passed legislation limiting how many days initial opioid prescriptions could be written for.

It is always hard to put the genie back in the bottle. Two years after the revised guideline was released, about 90% of patients still have trouble getting their opioid prescriptions filled at pharmacies. Others have to fight with their insurance company to get opioid medication covered.

Patients are still being forced into withdrawal and disability, despite a history of taking opioids safely and responsibly. Some will have to leave jobs they could only perform with the help of opioids. Others can’t play with their kids, walk the dog or even get out of bed, because they are no longer able to get the medication that helped them lead relatively normal lives.

It should not have taken CDC six years to revise the opioid guideline, to make clear that they were only recommendations and never a mandate.

Is there a way to undo the damage? For the doctors who closed their practices or stopped treating pain, it is probably too late. For the patients who chose suicide because they could no longer get opioids, it is definitely too late

But maybe, just maybe, we can persuade doctors, pharmacists, lawmakers and insurers to take another look at the revised opioid guideline and convince them they are out of line.

It would be helpful if the CDC joined in an effort to fix the mess that it helped create.

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. 

Ransomware Hackers Disrupt Healthcare Payment System

By Darius Tahir, KFF Health News

Early in the morning of Feb. 21, Change Healthcare, a company unknown to most Americans that plays a huge role in the U.S. health system, issued a brief statement saying some of its applications were “currently unavailable.”

By the afternoon, the company described the situation as a “cyber security” problem.

Since then, it has rapidly blossomed into a crisis.

The company, recently purchased by insurance giant UnitedHealth Group, reportedly suffered a cyberattack. The impact is wide and expected to grow. Change Healthcare’s business is maintaining health care’s pipelines — payments, requests for insurers to authorize care, and much more. Those pipes handle a big load: Change says on its website, “Our cloud-based network supports 14 billion clinical, financial, and operational transactions annually.”

Initial media reports have focused on the impact on pharmacies, but techies say that’s understating the issue. The American Hospital Association says many of its members aren’t getting paid and that doctors can’t check whether patients have coverage for care.

But even that’s just a slice of the emergency: CommonWell, an institution that helps health providers share medical records, information critical to care, also relies on Change technology. The system contained records on 208 million individuals as of July 2023. Courtney Baker, CommonWell marketing manager, said the network “has been disabled out of an abundance of caution.”

“It’s small ripple pools that will get bigger and bigger over time, if it doesn’t get solved,” Saad Chaudhry, chief digital and information officer at Luminis Health, a hospital system in Maryland, told KFF Health News.

Here’s what to know about the hack:

Who Did It?

Media reports are fingering ALPHV, a notorious ransomware group also known as BlackCat, which has become the target of numerous law enforcement agencies worldwide. While UnitedHealth Group has said it is a “suspected nation-state associated” attack, some outside analysts dispute the linkage. The gang has previously been blamed for hacking casino companies MGM and Caesars, among many other targets.

The Department of Justice alleged in December, before the Change hack, that the group’s victims had already paid it hundreds of millions of dollars in ransoms.

(Update: UnitedHealth confirmed Thursday that Blackcat was responsible for the hacking. “We are actively working to understand the impact to members, patients and customers,” Tyler Mason, a vice president at UnitedHealth, told TechCrunch.

Another UnitedHealth executive said the payment system could be disrupted “for the next couple of weeks,” according to STAT News.

In a post on its website, BlackCat took credit for the cyberattack and claimed to have stolen millions of Americans’ sensitive health and patient information. The post was later deleted.)

Is This a New Problem?

Absolutely not. A study published in JAMA Health Forum in December 2022 found that the annual number of ransomware attacks against hospitals and other providers doubled from 2016 to 2021.

“It’s more of the same, man,” said Aaron Miri, the chief digital and information officer at Baptist Health in Jacksonville, Florida.

Because the assaults disable the target’s computer systems, providers have to shift to paper, slowing them down and making them vulnerable to missing information.

Further, a study published in May 2023 in JAMA Network Open examining the effects of an attack on a health system found that waiting times, median length of stay, and incidents of patients leaving against medical advice all increased — at neighboring emergency departments. The results, the authors wrote, mean cyberattacks “should be considered a regional disaster.”

Attacks have devastated rural hospitals, Miri said. And wherever health care providers are hit, patient safety issues follow.

Care can also suffer. For example, a 2017 attack, dubbed “NotPetya,” forced a rural West Virginia hospital to reboot its operations and hit pharma company Merck so hard it wasn’t able to fulfill production targets for an HPV vaccine.

Because of the Change Healthcare attack, some patients may be routed to new pharmacies less affected by billing problems. Patients’ bills may also be delayed, industry executives said. At some point, many patients are likely to receive notices their data was breached. Depending on the exact data that has been pilfered, those patients may be at risk for identity theft, Chaudhry said. Companies often offer free credit monitoring services in those situations.

“Patients are dying because of this,” Miri said. Indeed, an October preprint from researchers at the University of Minnesota found a nearly 21% increase in mortality for patients in a ransomware-stricken hospital.

How Did It Happen?

The Health Information Sharing and Analysis Center, an industry coordinating group that disseminates intel on attacks, has told its members that flaws in an application called ConnectWise ScreenConnect are to blame. Exact details couldn’t be confirmed.

It’s a tool tech support teams use to remotely troubleshoot computer problems, and the attack is “apparently fairly trivial to execute,” H-ISAC warned members. The group said it expects additional victims and advised its members to update their technology. When the attack first hit, the AHA recommended its members disconnect from systems both at Change and its corporate parent, UnitedHealth’s Optum unit. That would affect services ranging from claims approvals to reference tools.

Millions of Americans see physicians and other practitioners employed by UnitedHealth and are covered by the company’s insurance plans. UnitedHealth has said only Change’s systems are affected and that it’s safe for hospitals to use other digital services provided by UnitedHealth and Optum, which include claims filing and processing systems.

But not many chief information officers “are jumping to reconnect,” Chaudhry said. “It’s an uneasy feeling.”

Miri says Baptist is using the conglomerate’s technology and that he trusts UnitedHealth’s word that it’s safe. Neither executive was sanguine about the future of cybersecurity in health care.

“It’s going to get worse,” Chaudhry said.

“It’s a shame the feds aren’t helping more,” Miri said. “You’d think if our nuclear infrastructure were under attack the feds would respond with more gusto.”

While the departments of Justice and State have targeted the ALPHV group, the government has stayed behind the scenes more in the aftermath of this attack. Chaudhry said the FBI and the Department of Health and Human Services have been attending calls organized by the AHA to brief members about the situation.

Miri said rural hospitals in particular could use more funding for security and that agencies like the Food and Drug Administration should have mandatory standards for cybersecurity.

There’s some recognition among officials that improvements need to be made.

“This latest attack is just more evidence that the status quo isn’t working and we have to take steps to shore up cybersecurity in the health industry,” said Sen. Mark Warner (D-Va.), the chair of the Senate Select Committee on Intelligence and a longtime advocate for stronger cybersecurity, in a statement to KFF Health News.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

A Guardian Angel Stronger Than Pain

By Cynthia Toussaint, PNN Columnist

What I’m going to write about I can’t fully explain. There was a time when I would have been skeptical of my own forthcoming words. 

But here goes…

I’m certain that I’m in touch with another plain of existence due to my pain. To be precise, it’s a person I deeply love, a person I was never blessed to meet.

My aunt Grace has always been bigger than life to me, an angel who I named my work for. Like me, she was in the vortex of monumental generational trauma, the bread and butter of our family.

Despite my grandmother disowning Grace, her oldest daughter, then having her only other child, my mother, kidnapped, and then her ex-husband, my grandfather, committed, Grace managed to keep her feet planted on the ground.

With grit and dogged determination, she ran Grandpa’s dairy farm, regularly brought food to my mother, who was being starved by my grandmother, and eventually got her father out of the asylum. That’s a lot on one pair of shoulders.

Grace paid the ultimate price for her goodness in the jaws of trauma when she died from leukemia at age 20 in 1947. I’ve always been compared to my sweet aunt, and even repeated the familial illness pattern when I got Complex Regional Pain Syndrome at the same age, ending my life in a different way.

When I was diagnosed with aggressive breast cancer in 2019 and told by my doctors that the toll of fixing my dysfunctional family was the cause of my cancer and decades of pain, I brought Grace into my daily rituals and meditations for comfort. I was in treatment hell, and her essence was safe and loving and healing. With time, I discovered that Grace was my guardian angel.

When I brought this seemingly illogical ritual up with a respected integrative medicine colleague, he advised that “Ancestral Healing” is a real thing, something Native American people have done for millennia. He went on to share, “You instinctively knew to go there, Cynthia, because healing their trauma will heal your own.”

Over the last year, my daily conversations with Grace became so intense, I began asking her to visit me at my condo. The love I felt for her was profound and reciprocated so strongly, I just had to have her near.

You see, 2023 was the worst year of my life. After fighting a cancer recurrence, complications left me in the hospital near death. Then I had ever-piling pain problems seemingly signed, sealed and delivered from a dark realm. This led to crushing isolation compounded by COVID protocols, as I feared its long version would end me. I desperately needed my angel. 

This is when things got inexplicable, straining the boundaries of human logic and reason.

It started dead of night Christmas morning. My partner, John, and I have a tradition of keeping a small, faux tree in our bedroom, and this year we added a ballerina snow-globe to our light show.

Somehow, though one ran on battery and the other via cord, they both turned off while we slept. After checking them, we turned them back on, only to witness them go off a second time simultaneously later that morning. Separate power sources, no timers, no condo power outage.

The first time was beyond baffling, the second time I just knew. Grace had accepted my invitation. Both light show objects went off as many times as I could turn them back on during the season, and it felt loving and magical to know Grace was with me.

During this time, John recalled an incident shortly before Christmas. He was in our condo plaza giving our kitty some outdoor time, when he distinctly heard a friendly young woman say, “Hello, John.” The weird part was that no one was there. He only later connected the dots.

When the dreaded day came to take Christmas decor down, I sobbed and John’s eyes welled. It felt like we were saying goodbye to Grace until next year. But the “miracles” kept rolling.

That night, to curb our loss, I put up a large butterfly nightlight (run by batteries) given to me by a close girlfriend for my New Year’s Eve birthday. You guessed it. The next morning it was off.  Then the next, and the next. No timer, even changed the batteries. As of this writing, my butterfly goes off up to five times a night.

Other mystical things have happened, too numerous to mention, though they include a tree-top vintage angel, another vocal communication from a young woman and the number 1111, which I’ve learned signifies the nearness of a guardian angel. I still speak intimately to Grace every day during my Ancestral Healing work and have no doubt she salved me through the worst year of my life. You see, Grace is stronger than pain.

What do I make of all of this? I asked Grace to come, and she did. Every day I ask her to come again, and she does. I think she’s made herself known because I was in the right place and space to receive her love. I needed her like no other time.

And having her here, watching over me, comforting me, guiding me, eases my body and soul. I feel blessed, like I’m absorbed in a healing light of well-being. I’ve gone from a life of illness and desperation to one of wellness and gratitude. I’m even pursuing passions I’d let go of for far too long. 

I’ve come to believe that the universe bestows other-worldly gifts upon those who experience great loss. I also believe we women in pain are more sensitive than others, which is, in part, why we have pain. But that sensitivity, that portal if you will, can bring us blessings more powerful than pain - if we are prepared to receive and believe.

He, she, it, they are ready to help, to guide, to ease. Seek the sacred and be open to its grace.

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 multiple 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.”

Dietary Supplements Need More Regulation

By Emily Hemendinger and Katie Suleta

Dietary supplements are a big business. The industry made almost $39 billion in revenue in 2022, and with very little regulation and oversight, it stands to keep growing.

The marketing of dietary supplements has been quite effective, with 77% of Americans reporting feeling that the supplement industry is trustworthy. The idea of taking your health into your own hands is appealing, and supplements are popular with athletes, parents and people trying to recover more quickly from a cold or flu, just to name a few.

A 2024 study found that approximately 1 in 10 adolescents have used nonprescribed weight loss and weight control products, including dietary supplements.

Notably, that systematic review found that nonprescribed diet pill use was significantly higher than the use of nonprescribed laxatives and diuretics for weight management. These types of unhealthy weight control behaviors are associated with both worsened mental health and physical health outcomes.

As a licensed clinical social worker specializing in treating anxiety disorders and eating disorders and a biomedical research director, we’ve seen firsthand the harm that these supplements can do based on unfounded beliefs. The underregulated market of dietary supplements is setting consumers up to be misled and potentially seriously harmed by these products.

Supplements Often Mislabeled

The Food and Drug Administration specifies that supplements must contain a “dietary ingredient” such as vitamins, minerals, herbs, amino acids, enzymes, live microbials, concentrates and extracts, among others.

Unfortunately, manufacturers can claim that a product is a supplement even when it doesn’t meet those criteria, such as products containing the drug tianeptine, a highly addictive drug that can mimic the biological action of opioids. Some of these products are labeled as dietary supplements but are anything but.

Products containing kratom, a substance with opioid-like effects, which are sold over the counter in many gas stations, claim to be herbal supplements but are mislabeled.

Under a 1994 law, dietary supplements are classified as food, not as drugs. This means dietary supplements are not required to prove efficacy, unlike drugs. Regulators also don’t take action on a product until it is shown to cause harm.

However, the FDA’s website states that “many dietary supplements contain ingredients that have strong biological effects which may conflict with a medicine you are taking or a medical condition you may have. Products containing hidden drugs are also sometimes falsely marketed as dietary supplements, putting consumers at even greater risk.”

In other words, supplements are regulated as food instead of drugs, even though they can interact with medications and may be laced with hidden drugs not included on the label.

Manufacturers of dietary supplements can make claims about their products that fall into three categories: health claims, nutrient content claims and claims about the product’s function, structure or both, all without needing to provide supporting evidence.

Misbranding and false advertising are rampant with dietary supplements, including false claims of curing cancer, improving immune health, improving cognitive functioning, improving fertility, improving cardiovascular health and, of course, promoting weight loss and weight control.

Hidden Dangers

You can find supplements that claim to be good for just about every health condition, concern or goal, so it should be no surprise that there are supplements marketed for weight loss.

In August 2021, the FDA cracked down on some of these weight loss products because of the presence of undeclared drugs. For example, of the 72 products recalled, the drug sibutramine, sold as Meridia, was found in 68 of them.

While the FDA may take further action beyond the recalls, the agency acknowledged that it is not able to test every weight loss supplement for contamination with drugs.

These crackdowns demonstrate some progress, though several issues remain. Warning label placement, ingredients and beliefs based on misleading or false advertising are still highly problematic.

Some weight loss supplements may have FDA warnings on them. Of those that do, the disclaimers are rarely displayed on the front of the product label, so consumers are less likely to see them.

Ingredients in weight loss supplements can and do have adverse effects. They have caused people to be admitted to the emergency room for cardiovascular and swallowing problems, including in young, seemingly healthy people.

Mental health concerns and eating disorders are on the rise. As a result, researchers are examining unhealthy weight control behaviors, including the use of dietary supplements and how accessible they are to adolescents and children.

People who have eating disorders often suffer related health issues such as bone loss, osteoporosis and vitamin deficiencies. In response, their doctors may prescribe dietary supplements like calcium, vitamin D and nutritional supplement shakes. But these are not the dietary supplements of concern. The concern is with supplements that promote weight loss, muscle building or both.

People with eating disorders may be attracted to dietary supplements that claim quick and pain-free weight loss or muscle gain. Additionally, dietary supplement users may struggle with an increase in compulsive exercise or other unhealthy weight control behaviors.

Diet pill and supplement use has also been associated with increased risk for developing eating disorders and disordered eating, as well as low self-esteem, depression and substance use. While dietary supplements do not solely cause eating disorders or disordered eating, they are one contributing factor that may be addressed with preventive measures and regulations.

Protein powders and other fitness supplements also have wide appeal. Research shows that girls are more at risk than boys for using weight loss supplements. But a growing problem in boys is the use of fitness supplements such as protein powder and creatine products, a compound that supplies energy to the muscles.

Use of fitness supplements sometimes signifies a preoccupation with body shape and size. For example, a 2022 study found that protein powder consumption in adolescence was associated with future use of steroids in emerging adulthood.

Protein powders make claims of building lean muscles, while creatine boasts providing energy for short-term, intense exercise.

Protein itself is not harmful at recommended doses. However, protein powders may contain unknown ingredients, such as certain toxins or extra and excessive sugar. They can also be dangerous when used in excess and to replace other foods that possess vital nutrients.

And while creatine can usually be safely used in adults, overuse can lead to health problems and is not recommended for minors. Ultimately, the impact of long-term use of these supplements, especially in adolescents, is unstudied.

Possible Solutions

One proposed regulation by researchers at Harvard University includes taxing dietary supplements whose labels tout weight loss benefits.

Another policy recommendation involves banning the sale of dietary supplements and other weight loss products to protect minors from these underregulated and potentially dangerous products.

In 2023, New York successfully passed legislation that banned the sale of these products to minors, while states including Colorado, California and Massachusetts have considered or are considering similar action.

Ultimately, medical professionals recommend that parents and caregivers encourage their children to get protein and vitamins from whole foods instead of turning to supplements and powders. They also recommend encouraging teens to focus on balanced nutrition, sleep and recovery, and a variety of resistance, strength and conditioning training.

Emily Hemendinger, LCSW, is an Assistant Professor of Psychiatry at University of Colorado Anschutz Medical Campus.

Katie Suleta is a PhD Candidate in Medicine and Health at George Washington University.

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

A Pained Life: Setting the Record Straight

By Carol Levy, PNN Columnist

Decades ago, my pain management doctor suggested that my family doctor write my codeine prescriptions. “Dr. Feld” had no problem doing so.

The last time that I saw Dr. Feld and asked for the prescription, he had me sign the opioid consent form and provide a urine sample. Then he called in the prescription to my pharmacy. No muss, no fuss.

Dr. Feld just retired, so I saw one of the new doctors in the practice. I was there for another reason but asked, “As long as I'm here, can you call in the codeine prescription?”

To my surprise, the new doctor said, “Yes, but I will only give you 30 milligrams, not the 60.”

“Dr. Feld has been giving me 60 milligrams for years.”

“Well, I won't. I'll only give you half the dosage.”

This was the first time the new doctor had seen me, so he knew little about me or my diagnosis. There were no questions about my level of pain, when I took the codeine, or why had I been taking it less often. Nothing. He decided I was going to get less and reality didn't matter. 

This jumping to conclusions seems to be pervasive. I had neuropsychological testing a few weeks ago. I was having some issues with recalling words and wanted to be assured all was well with my cognitive abilities.

When I received a copy of the report, I was upset. The doctor had couched many of the results in his preconceived notions about me, rather than reality. Some of it could have easily been rectified in the follow-up appointment, if he had bothered to ask. He could have asked why I seemed anxious throughout the testing or if I was depressed. Instead, he drew his own conclusions.

Missing from the report was the fact that I had to stop at one point during the test due to the pain. When I told the tester that I needed to take a pain pill, she told me they didn't want me to do that.

So yes, I was anxious for the rest of the test, not because I had anxiety but because I had pain and knew that each additional part of the test could well make the pain worse.

The depression he thought he found was in response to questions about my life circumstances. I checked yes to “Do you feel isolated?” and “I do not go out much.” That is my life circumstance, because of the pain. 

Understandably, many doctors are afraid to give us the opioids we have been on for years or to give us the same dosages. They’re afraid of the FDA. But I am also finding, in my singular experience, that it may be because they just don't care about our circumstances, our pain or the benefits that opioids provide, allowing many of us to have fuller lives.

It is not acceptable when our medical records contain falsehoods that are based on preconceived notions or the laziness of those who examine us.

When I went to the online portal to see my medical records, I noticed the doctor wrote about tests and exams he didn't do. The results for them were patently false, indicating I could do things like move my neck fully, which I am incapable of doing. I contacted him through the portal, telling him what he wrote was wrong. To his credit, he changed it.

At first, I didn't like the idea of a portal and too much personal information being online, even if it was behind a firewall. But now I find it is an excellent instrument for seeing if the doctor, nurse, or tester posted accurate results and if my records contain falsehoods.

We don't have a lot of power when it comes to what is put in our medical records, what is ignored, or flat out wrong. I used to think getting my records when they were on paper was not worth the effort, because there was no way to set the record straight. But now that I can read the reports online, I fell like I have been empowered to correct them.

We must take back as much power as we can. Take a moment and check your medical records. And, if necessary, tell them what they got wrong. 

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.

Patients Should Know the Health Benefits of Ketamine, Not Just the Risks

By Drs. Amber Borucki and Rakhi Dayal 

Recent headlines about the death of “Friends” actor Matthew Perry have pointed to ketamine as a contributing cause. Perry drowned in his hot tub last October, which the medical examiner’s office attributed to the “acute effects of ketamine,” as well as coronary artery disease and the opioid buprenorphine.

With this news, the public became more familiar with a medication they may never have heard of previously.  Ketamine is a classified by the Drug Enforcement Administration (DEA) as a “dissociative anesthetic,” meaning that it can cause the user to feel disconnected and alter their perceptions of sight or sound. 

Ketamine is used in hospital or surgical settings for anesthesia purposes, for acute pain management, in the emergency room or intensive care, and in some cases for chronic pain management. A form of ketamine (esketamine) is also used to treat mental health conditions. 

Appropriate monitoring and medical supervision are necessary for safe ketamine use. While it is important to recognize the risks of this medication when used improperly, it is also important to make sure that people don’t become overly fearful of a drug that serves an important role in patient care when delivered properly by trained healthcare providers. 

When the news broke that Michael Jackson’s death was attributed to propofol, patients were suddenly concerned about the use of this drug in their anesthesia treatment. As physicians, it is our responsibility to make sure patients understand the proper and improper uses of medications, and that we help alleviate concerns through education. As with any treatment, we need to strike the right balance between providing information on the risks, while also communicating the benefits. 

While ketamine is in the spotlight and more stories are published about its use, it is important that we take a moment to provide greater clarity about this medication.  

What Is Ketamine?  

Ketamine is an anesthetic agent that was originally developed in 1963 and gained approval from the Food and Drug Administration (FDA) as a general anesthetic in 1970. It is well established that ketamine has tremendous clinical value in providing sedation and pain relief when patients undergo anesthesia, and can also be beneficial as part of a comprehensive pain management plan. More recently, the FDA approved a form of ketamine in a nasal spray for treatment-resistant depression.   

Ketamine is used for a variety of indications, with some being FDA-approved and some being considered "off-label" uses.  

• General anesthesia (FDA-approved): Ketamine can be used as part of a general anesthetic given for surgery, and in certain clinical situations is one of the preferred medications.  When ketamine is given by a trained anesthesia provider, it is a safe and effective part of the anesthesia regimen.     

• Acute pain (off-label): Ketamine can be given to treat pain after surgery or for other significant acute pain conditions. This is commonly done by providing a low-dose infusion of ketamine through an IV while a patient recovers in the hospital. Although this is considered "off-label” use, there are joint guidelines issued in 2018 by the American Society of Regional Anesthesia and Pain Medicine (ASRA), the American Society of Anesthesiologists (ASA), and the American Academy of Pain Medicine (AAPM) to guide safe use for acute pain.

• Chronic pain management (off-label): Ketamine for chronic pain is also considered "off-label" use, but there are also consensus guidelines by the ASRA, ASA and AAPM that discuss chronic pain clinical scenarios where research found ketamine to be beneficial. 

If a patient is considering the use of ketamine for chronic pain, it is important to understand what type of medical supervision is provided and by whom. Patients should consider seeking treatment from a physician who is board certified in pain medicine, as they have extra training in pain management. The use of ketamine for chronic pain should be part of a larger umbrella of comprehensive pain treatment strategies provided in a multidisciplinary care team model.

What Are the Risks of Ketamine?

Ketamine is classified a schedule III controlled substance by the DEA, and therefore has some addictive potential. Side effects include increased heart rate, high blood pressure, increased saliva production, blurry vision, dizziness, sedation, nausea, urinary symptoms, dissociation (out of body sensation) and respiratory depression. It can even cause hallucination at certain doses. 

Caution is advised when ketamine is used with other medications that have similar adverse effects, such as sedation, respiratory depression, confusion, and delirium. Medication interactions and overdose with ketamine can lead to unconsciousness, slowed breathing, and rare severe consequences such as death. 

The medical use of ketamine in general anesthesia under the medical supervision of a trained provider is generally considered safe. Off-label use of ketamine for acute and chronic pain also has established national guidelines for medical practitioners to follow. This treatment can provide pain relief to patients safely, when provided by a board-certified anesthesiologist or pain physician using proper monitoring and safety guidelines.

Unsupervised and non-medical use of ketamine, particularly when taken in combination with other sedating medications, can lead to adverse outcomes and even death, as we saw with Matthew Perry. We encourage patients to have conversations with providers about their treatment plan and to discuss any concerns they have about the medications they are prescribed.

Amber Borucki, MD, is an Associate Professor of Anesthesiology, Perioperative and Pain Medicine at Stanford University.

Rakhi Dayal, MD is Chair of the Pain Committee for the California Society of Anesthesiologists, and Program Director of Pain Medicine and Professor of Anesthesiology & Perioperative Care at University of California, Irvine.

Checking the Boxes: Why Therapy Was Not Helpful

By Mia Maysack, PNN Columnist

Living with persistent pain or chronic illness is enough to push anyone to the brink of insanity. I’ve reached out for mental health assistance in the past, and either regretted it or didn’t feel it was much help at all.

I later came to the realization that therapy could only ever be what we make of it, so I decided to release the disappointment from the past and give it another wholehearted try.

I learned that the therapy process, particularly since COVID-19, is a nightmare. The isolation of the pandemic helped us recognize the importance of mental health, along with the fact that there’s a shortage of providers. It’s now nearly impossible to find a therapist.

It’s even more difficult to come across one that is accepting new patients and whatever insurance you might or might not have. I spent the better part of a year researching, making phone calls and being told no, before I finally came across a situation that seemed promising.

After providing extensive documentation exploring every aspect of my life and then playing the waiting game to get the green light from insurance, I was finally able to move forward with scheduling an appointment at a clinic. It would have been many more months before I could be seen in-person, so I settled for a virtual appointment.

I was happy to connect with a provider, who initially seemed warm and caring. Little did I realize how short lived this would be.

During our conversation, we covered the basics. I attempted to explain how anyone who lives the way that I do must experience some form of depression or sadness, but that doesn’t necessarily mean that I always feel that way. I don’t feel a need to label people as “sad” or “depressed,” for I believe there’s a wide spectrum we all exist on. We can allow ourselves to feel sad or anxious in any given moment, without necessarily committing to that experience permanently.

Prior to this therapy session, I’d been participating in a behavioral health program where a provider would call once every few weeks for a momentary check-in. Being that I had no other support at that time, I was thankful for the resource and couldn’t help but imagine what different points in my life would’ve been like had something like that been available then.

I’m under the impression this check-in option was cultivated during the pandemic in an attempt to alleviate the mental health stress that so many of us were having.  It’s more of a band-aid than anything else, but slowing the emotional bleeding can be the difference between life or death for many.

I remember having a pleasant conversation with someone who reached out. We chatted for about a half hour as they listened to some of my health-related goals, then advised me they’d have someone follow up to ensure the plan was proceeding smoothly.  

At the very last second, they requested I complete a survey -- one that I’d done countless times already: the PHQ-9 questionnaire.  It asks how you were feeling in the last two weeks and to rate your experiences on a numeric scale.  Was I tired? Feeling hopeless? Eating enough? Eating too much? Was I thinking of hurting myself?

Ending the phone call on such a note turned an otherwise enjoyable and productive conversation into a traumatic reminder of the ways I’d been struggling. Then the session was over and I was on my own again.

On the next call, I offered feedback -- mentioning the survey should come sooner in the conversation and empower the patient to choose when they’d complete it or even not take it. That should be my right and my choice.

I was advised that the survey was part of the process of getting a diagnosis. The therapist said this wasn’t so much the clinic’s way of doing things, but rather “served insurance purposes.” That rubbed me the wrong way.

Here I was, absolutely desperate for therapy, but instead of receiving actual help, I was reminded once again that the most important thing for a provider is to collect patient data. With a heavy heart, I chose to end my pursuit of counseling. It feels harmful and unsafe to be reminded that “checking the boxes” is prioritized over the quality of human life.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

The Emergency Room Quandary

By Carol Levy, PNN Columnist

I went to the ER only once because my pain was so out of control. The nurses and the doctor were nice, but mostly I was ignored. After waiting what seemed like hours, a nurse came to my bedside with a needle.

"Hold out your arm," she said and injected me with... something. She didn't say what it was.

The pain was so overwhelming, I didn't ask. Whatever it was, it did nothing, not even make me drowsy.

They kept me there for a few more hours, offering nothing after the injection but a cursory, "Sorry it didn't help you" and "Maybe rest will help."

After another hour or so, I left. They were of no help. They could be of no help.

I used to work as an emergency room ward clerk, the first person people saw when they came in. I would run back to get a doctor or nurse if a patient had one of three complaints: chest pain, symptoms of a kidney stone, or a migraine. Those patients were immediately taken to an exam room.

All the other patients I signed in, then directed them to the waiting room. “Please have a seat and wait for your name to be called,” I’d tell them.

Often, they would sit for hours watching as others who came in were immediately taken to the exam room. I had to repeatedly explain that other patients' complaints were more serious and they had to be seen first.

Some of those waiting patients became angry. They had no clue how many patients were already in the exam rooms, or if the doctors and nurses were dealing with critically injured patients from auto accidents or others with serious health issues.

The ones who came in with complaints of “I have a cold” or “I hurt my finger 3 weeks ago” went to the bottom of the list. So too did those whose main complaint — such as chronic pain — was not of immediate concern. It may have seemed like an emergency to them, but to the ER staff it often isn't. An emergency room can never operate on a first come, first serve basis.

Often, as chronic pain sufferers, we have trouble finding doctors or pain management specialists who are willing to take us as patients. Without a doctor we are vulnerable. When the pain gets too bad or feels uncontrollable, our only alternative may be the ER.

The problem with that is the emergency room is not going to help us much, if at all. They don't know our history. They don't know us. When a patient says they don’t have a doctor and insists on getting opioid pain medication, they immediately become suspect. They might be an addict trying to cadge an opioid.

We are so mired in the “opioid crisis” that it blinds us to the other issues that are harming us. We need to look at all the issues that make us vulnerable. Being able to find a doctor should be high on the list of what we need to fight for.

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

What Money Can’t Buy

By Mia Maysack, PNN Columnist

Just about everyone I've encountered has commented on their lack of cheer over the holiday season. I can relate to that in my own way, but also think we put too much pressure on ourselves to be appropriately cheerful when the calendar tells us to be.

I have been disheartened by the fact society presents the holidays as a joyous time, when they really seem to be more of an excuse to spend more than we should and consume more than we need.

This often results in people being rude in stores or driving recklessly, as if their lives are more important than anyone else's. We fixate on what we want or lack -- as opposed to what others may need. The holiday spirit should be less about us and more about what we can do for others.

Some of us are without our loved ones-- not just during the holidays, but literally every day. In the very house or apartment next to yours, there could be someone silently suffering. On our own streets, people are homeless or starving as we rush by them, too busy to care. On the other side of the world, there are innocent people effectively being wiped out via genocide.

I think it's absolutely okay that we are not all that jolly. In fact, if we were, there would be something extraordinarily wrong with that. This isn't to belittle anyone feeling joyful, it's solely a matter of keeping things in perspective.

Please take time in the new year to enjoy this opportunity to love yourself and appreciate those around you. If you are working, understand that your job is the dream of the unemployed. Reflect on what you've made it through and accomplished -- even if all you managed to do was live another year and survive.

Do something small to lift yourself up -- whether its fresh air, listening to music, making a tasty dish, or volunteering or donating in a meaningful way for another person.

There will come a day when the only things you long for are those that money can’t buy. There will be times when you'd give anything to revisit the past that came and went so quickly.

The only item on our holiday wish lists should be more time – time to optimally utilize the gifts we already have and to make the most of life while we still can.

Sending prayers to all of you for a safe, healthy and gentle 2024.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

Health Misinformation Rampant on Social Media

By Dr. Monica Wang, Boston University

The global anti-vaccine movement and vaccine hesitancy that accelerated during the COVID-19 pandemic show no signs of abating.

According to a survey of U.S. adults, Americans in October 2023 were less likely to view approved vaccines as safe than they were in April 2021. As vaccine confidence falls, health misinformation continues to spread like wildfire on social media and in real life.

I am a public health expert in health misinformation, science communication and health behavior change.

In my view, we cannot underestimate the dangers of health misinformation and the need to understand why it spreads and what we can do about it. Health misinformation is defined as any health-related claim that is false based on current scientific consensus.

False Claims About Vaccines

Vaccines are the No. 1 topic of misleading health claims. Some common myths about vaccines include:

• Their supposed link with human diagnoses of autism. Multiple studies have discredited this claim, and it has been firmly refuted by the World Health Organization, the National Academies of Sciences, Engineering and Medicine, the American Academy of Pediatrics and the Centers for Disease Control and Prevention.

• Concerns with the COVID-19 vaccine leading to infertility. This connection has been debunked through a systematic review and meta-analysis, one of the most robust forms of synthesizing scientific evidence.

• Safety concerns about vaccine ingredients, such as thimerosal, aluminum and formaldehyde. Extensive studies have shown these ingredients are safe when used in the minimal amounts contained in vaccines.

• Vaccines as medically unnecessary to protect from disease. The development and dissemination of vaccines for life-threatening diseases such as smallpox, polio, measles, mumps, rubella and the flu has saved millions of lives. It also played a critical role in historic increases in average life expectancy – from 47 years in 1900 in the U.S. to 76 years in 2023.

High Cost of Misinformation

Beliefs in such myths have come at the highest cost.

An estimated 319,000 COVID-19 deaths that occurred between January 2021 and April 2022 in the U.S. could have been prevented if those individuals had been vaccinated, according to a data dashboard from the Brown University School of Public Health. Misinformation and disinformation about COVID-19 vaccines alone have cost the U.S. economy an estimated US$50 million to $300 million per day in direct costs from hospitalizations, long-term illness, lives lost and economic losses from missed work.

Though vaccine myths and misunderstandings tend to dominate conversations about health, there is an abundance of misinformation on social media surrounding diets and eating disorders, smoking or substance use, chronic diseases and medical treatments.

My team’s research and that of others show that social media platforms have become go-to sources for health information, especially among adolescents and young adults. However, many people are not equipped to maneuver the maze of health misinformation.

For example, an analysis of Instagram and TikTok posts from 2022 to 2023 by The Washington Post and the nonprofit news site The Examination found that the food, beverage and dietary supplement industries paid dozens of registered dietitian influencers to post content promoting diet soda, sugar and supplements, reaching millions of viewers. The dietitians’ relationships with the food industry were not always made clear to viewers.

Studies show that health misinformation spread on social media results in fewer people getting vaccinated and can also increase the risk of other health dangers such as disordered eating and unsafe sex practices and sexually transmitted infections. Health misinformation has even bled over into animal health, with a 2023 study finding that 53% of dog owners surveyed in a nationally representative sample report being skeptical of pet vaccines.

Declining Trust

One major reason behind the spread of health misinformation is declining trust in science and government. Rising political polarization, coupled with historical medical mistrust among communities that have experienced and continue to experience unequal health care treatment, exacerbates preexisting divides.

The lack of trust is both fueled and reinforced by the way misinformation can spread today. Social media platforms allow people to form information silos with ease; you can curate your networks and your feed by unfollowing or muting contradictory views from your own and liking and sharing content that aligns with your existing beliefs and value systems.

By tailoring content based on past interactions, social media algorithms can unintentionally limit your exposure to diverse perspectives and generate a fragmented and incomplete understanding of information. Even more concerning, a study of misinformation spread on Twitter analyzing data from 2006 to 2017 found that falsehoods were 70% more likely to be shared than the truth and spread “further, faster, deeper and more broadly than the truth” across all categories of information.

The average kindergarten student sees about 70 media messages every day. By the time they’re in high school, teens spend more than a third of their day using media.

How to Identify Misinformation

The lack of robust and standardized regulation of misinformation content on social media places the difficult task of discerning what is true or false information on individual users. We scientists and research entities can also do better in communicating our science and rebuilding trust, as my colleague and I have previously written. I also provide peer-reviewed recommendations for the important roles that parents/caregivers, policymakers and social media companies can play.

Below are some steps that consumers can take to identify and prevent health misinformation spread:

• Check the source. Determine the credibility of the health information by checking if the source is a reputable organization or agency such as the World Health Organization, the National Institutes of Health or the Centers for Disease Control and Prevention. Other credible sources include an established medical or scientific institution or a peer-reviewed study in an academic journal. Be cautious of information that comes from unknown or biased sources.

• Examine author credentials. Look for qualifications, expertise and relevant professional affiliations for the author or authors presenting the information. Be wary if author information is missing or difficult to verify.

• Pay attention to the date. Scientific knowledge by design is meant to evolve as new evidence emerges. Outdated information may not be the most accurate. Look for recent data and updates that contextualize findings within the broader field.

• Cross-reference to determine scientific consensus. Cross-reference information across multiple reliable sources. Strong consensus across experts and multiple scientific studies supports the validity of health information. If a health claim on social media contradicts widely accepted scientific consensus and stems from unknown or unreputable sources, it is likely unreliable.

• Question sensational claims. Misleading health information often uses sensational language designed to provoke strong emotions to grab attention. Phrases like “miracle cure,” “secret remedy” or “guaranteed results” may signal exaggeration. Be alert for potential conflicts of interest and sponsored content.

• Weigh scientific evidence over individual anecdotes. Prioritize information grounded in scientific studies that have undergone rigorous research methods, such as randomized controlled trials, peer review and validation. When done well with representative samples, the scientific process provides a reliable foundation for health recommendations compared to individual anecdotes. Though personal stories can be compelling, they should not be the sole basis for health decisions.

• Talk with a health care professional. If health information is confusing or contradictory, seek guidance from trusted health care providers who can offer personalized advice based on their expertise and individual health needs.

• When in doubt, don’t share. Sharing health claims without validity or verification contributes to misinformation spread and preventable harm.

All of us can play a part in responsibly consuming and sharing information so that the spread of the truth outpaces the false.

Monica Wang, ScD, is an Associate Professor of Community Health Sciences at the Boston University School of Public Health and an Adjunct Associate Professor of Health Policy and Management at the Harvard T.H. Chan School of Public Health. She receives funding from the National Institutes of Health.

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

My Story: Why Is Everyone So Quiet About Rx Opioid Shortages?

By Kimberly Smith

I am a chronic pain patient in Florida with multiple modalities of pain: chronic intractable pain, pain from a sports injury, and pain from an autoimmune disease. To further complicate my situation, I also have a list of allergies and genetic mutations that leave me unable to take aspirin, NSAIDs, gabapentin, codeine, and morphine for pain relief.  

I have a background in medicine, pain management and hospice, so I’ve always been mindful of the spectrum of things that can go awry with opioids. I keep myself on a stable dose with the goal of just “dialing down” the pain enough so that I can function, while not relieving it entirely.  

Fifteen years ago, when public attitudes started turning against opioids, I was switched to a fentanyl transdermal patch because it was “less likely to be abused.” I had hoped to avoid using fentanyl until my final days, knowing that once you’re on fentanyl for an extended period, it’s a nightmare if you have to switch to anything else and potentially deadly if you suddenly stop.  

Starting in September, I started having trouble getting fentanyl patches at the CVS pharmacy I’ve been using for 30 years. Instead of the Mylan fentanyl patch that I’ve been using for 15 years, CVS only had a fentanyl patch that used a completely different type of adhesive mixture -- one that I absorb inconsistently and too quickly.

I had two absolutely frightening episodes using that patch where I couldn’t catch my breath.  I don’t think anyone would blame me for never wanting to try that brand again (Alvogen).

Now I call random pharmacies each month, trying to find the Mylan patch. The supply itself is dwindling and here I am needing one of the only two fentanyl patches still on the market. It’s insane and I’m constantly stressed, anxious and overwhelmed.  

Today, I called the CVS pharmacy about my second opioid, oxycodone 30mg, and was told this is the latest opioid that is only coming in sporadically. I’ve been having to use the oxycodone as a replacement for the periods when the pharmacies couldn’t source the fentanyl patch, so I no longer have any type of emergency supply (nor do I have the opportunity to build one up).

For me, this is the absolute end of the road for opioids. I lack the CYP enzyme to metabolize morphine and I have an additional mutation that affects the efficacy of the metabolic processes, so I require higher doses than “normal.”  

I’m in a terrible, terrible situation and I’m by no means alone.  I’m starting to dream about it every night.  My doctors and the pharmacy team who have been caring for me for decades are stressed and concerned, and all have made tremendous efforts to help. But without access to the two medications I need, their hands are tied.

One of my pharmacists searched the entire state for my meds for 9 weeks and couldn’t find any. I still have many friends who are pharmacists, pharmacy techs, doctors, nurse practitioners and physician assistants, and they’ve been telling me awful stories about how much time they spend trying to resolve the opioid shortages -- not to mention the emotional toll caused by listening to patients cry and panic about being left to endure horrible pain and withdrawal.  

I don’t understand why everyone is staying quiet about this problem, especially when the shortages affect the entire hospice system, oncology patients at cancer centers, anesthesia and twilight sleep procedures, emergency medicine, trauma medicine, surgical procedures, acute pain and, of course, chronic pain.  

Doctors and pharmacists have been responding to the shortage by moving their patients to other meds, which is exactly the harm that I suffered when I was taken off the Mylan patch. This further squeezes the availability of the meds that are available and pushes those patients out to make room for the patients who were on something else.  Even gabapentin is unavailable at many pharmacies.  This situation is dire and getting worse.

If politicians were smart, they would support legitimate patients and the relief of chronic pain by making immediate changes to provide opioids to those who need them. All of the patients who are suffering would absolutely cast their votes for anyone who relieved their misery and gave them their lives back.

Instead, the politicians just assume that pain patients don’t vote and write us off. This is incredibly shortsighted. We do vote - when we aren’t struggling with pain and forced withdrawal.

I’ve reached the point where I am legitimately scared about my future. The shortages will just grow worse and worse, unless and until sweeping, radical changes are made.  Most of us wouldn’t last two to three months without opioid medication, and some wouldn’t be able to endure just one.  

While I see endless reports about Biden and Trump in the mainstream media, there’s not a word about the opioid shortage crisis and the direct harm being visited upon legitimate patients. Diversion rates are low, overdoses are primarily caused by illicit fentanyl (a completely different substance than Rx fentanyl) and desperate patients feel forced to turn to the streets.

Isn’t this a violation of the spirit of our Constitution?  It is certainly cruel and unusual punishment. We who follow the law and contribute to society are being cruelly punished for the bad behavior of others -- behavior which is basically a lapse of morals and mental health issues, which cannot be legislated away. We need to change the media narrative and shame the politicians and policy makers who created this mess.  

Do you have a “My Story” to share?

Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

Opioid Therapy Is Controversial, But Why?

By Barby Ingle, PNN Columnist

There are many factors that contribute to the controversy surrounding opioids, which have been used for thousands of years for pain relief.

Mainstream media often say that opioid medication is harmful and increase the risk of addiction, overdose and death. Many media outlets do not distinguish between FDA approved medications and street drugs, or show the life-giving side of opioid medication.

That is the root cause of the controversy. If people don't understand or are misinformed, they go with what they hear -- right or wrong.

Let’s explore these issues and, hopefully, set the record straight.

Rx Opioid Side Effects

All medications have side effects, including opioids. At least 50% of patients in clinical trials experience a side effect from opioid therapy, such as nausea, vomiting, constipation, dizziness, dry mouth or sedation. These side effects vary and can decrease or increase with long-term use.

Most side effects of opioids improve shortly after therapy begins or following a dose increase. However, itching and constipation can persist throughout treatment. Most of the chronic pain patients I have met on my journey are okay with these side effects and wish to continue with treatment. For others, opioid therapy is discontinued when the side effects are too severe.

A variety of respiratory issues can be caused by opioids, including inadequate breathing, erratic breathing, and impairment of the upper airways. That can lead to respiratory depression, a precursor to an overdose. Patients in acute pain management who are new to opioids are most at risk of respiratory depression because they have not developed tolerance to opioids.

To be clear, an overdose from prescription opioids is relatively rare. A recent study found the risk of a fatal overdose at 90 morphine milligram equivalents (MME) – a fairly high daily dose – is only 0.26%. The risk is even lower at 50 MME – just 0.16%.

Opioids have more respiratory effects during sleep. Several fatalities have been reported in patients with obstructive sleep apnea, who may be contraindicated to opioid therapy. Patients with sleep apnea who take other central respiratory depressants, such as benzodiazepines, should be cautious about this. If opioids are prescribed to patients with sleep apnea, a nocturnal respiratory assessment will be needed.

Patients may absorb more opioids from transdermal opioid formulations if they have a fever or other illnesses. This is also true if they are exposed to heat, such as a sauna.

Is Pain Inevitable?

The Japanese author Haruki Murakami once wrote, "Pain is inevitable. Suffering is optional." Murakami was writing about running a marathon, but it’s an apt description for someone with chronic pain. Does their suffering have to be inevitable?

I didn't understand that concept as a collegiate coach or as an athlete until I developed chronic intractable pain and needed treatment. It is difficult to understand chronic pain or intractable pain if you haven't lived with them.

So that we are all on the same page, chronic pain is defined as pain lasting over three months. Intractable pain is complex and can last a lifetime, causing immense suffering. Acute pain is pain that lasts for less than three months.

Acute pain is usually caused by an injury, trauma or medical condition. Left untreated, acute pain can progress to the chronic stage, causing long-term disability, depression, and impaired quality of life. Therefore, it is essential to identify and treat pain as soon as possible, preferably in the acute stage.

Different approaches, including medication, physical therapy, and lifestyle changes, can be used to manage pain. Finding the right approach for each patient is crucial, as something that worked for one patient may not work for another. It is essential to consider all options before selecting the most appropriate treatment.  

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and the founder and former President of the International Pain Foundation. You can follow Barby at www.barbyingle.com. 

Is the DEA a Domestic Terrorist Organization?

By Carol Levy, PNN Columnist

Terrorism is very much in the news these days, given the Israeli-Hamas war and all the fallout from it around the world. But terrorism can also hit close to home and in unexpected ways.

The FBI defines domestic terrorism this way:

“Violent, criminal acts committed by individuals and/or groups to further ideological goals stemming from domestic influences, such as those of a political, religious, social, racial, or environmental nature.”

It may not be domestic violence in the literal meaning of the term, but I would posit the U.S. Drug Enforcement Administration is a domestic terrorist organization.

Why would I believe that? The answer lies in how terrorists work. Their goals and methods are simple: kill one person and scare thousands. In the DEA's case, it means arrest a doctor and allege that they overprescribe opioids without a legitimate medical reason. This has a chilling effect on thousands of other physicians, who then limit or even refuse to prescribe opioids.

If a doctor knows his patients well and has been prescribing opioids safely to them for years, with beneficial results, makes no difference. The doctor is essentially arrested on ideological, social and political grounds, which gives validation to the concept that they are being terrorized.

The DEA’s war on drugs has gone far beyond its original goal of going after street drugs and drug dealers. It has escalated into a war against prescription opioids and the doctors who prescribe them, essentially making patients hostages to the DEA's political persecution.

I know there are instances when the arrests are legitimate, but from what I can tell many of the doctors caught in the DEA snare have been unfairly targeted.

I have never been a victim of their terrorism. I did lose one of the best doctors I ever had when he lost his privileges to write scripts for opioids. Although this was not due to the DEA but his own inappropriate actions, it allows me to better understand the effect that DEA terrorism has on so many of us.

My experience is nothing compared to the stories of patients who can no longer work, play with their kids, or even get out of bed because the opioids that allowed them to do these things were tapered or discontinued. Or they can’t get their opioid prescriptions filled at a pharmacy.

It’s nothing compared to all the stories of patients killing themselves because they can no longer get the medication that was helping them. Or the patients who were abandoned by a doctor who fears the DEA, who then struggle to find another doctor with the courage to risk going to jail by prescribing opioids.

To the DEA, the fact that these medications are working and that doctors are legitimately prescribing them is irrelevant. Fear seems to be their primary goal. Is that not terrorism?

Until the DEA and politicians get out of the exam room, I fear that pain patients will remain their hostages.

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. 

12 Holiday Gifts for People Living with Chronic Pain and Illness

By Pat Anson, PNN Editor

Should opioids and other controlled substances be deregulated? Are health insurers and regulators interfering with the practice of medicine? What kind of pain care did President Kennedy get? Will cannabis help you sleep better? And whatever happened to Patient Z?

The answers to these and other questions can be found in PNN’s annual holiday gift guide. If you live with chronic pain and illness or have a friend or family member who does, here are 12 books that would make great gifts over the holidays. Or you can always “gift” one to yourself. Click on the book cover to see price and ordering information.

Doctor Bison’s Fables: An Allegory of the American Pain Refugee Crisis

Dr. Mark Ibsen uses animals as lead characters in a series of fables to convey the crisis faced by many pain sufferers in the U.S. Doctor Bison and his patient (an otter) are joined in a crowded exam room by a menagerie of other animals representing insurers, hospitals, regulators and law enforcement. All want to have a say in what Dr. Bison prescribes to his sick patient — resulting in little actual treatment for the otter.

The Silver Bullet Solution: Is It Time to End the War on Drugs?

Author James Gierach is a former Illinois prosecutor who believes the War on Drugs is the “worst public policy in the history of mankind.” Drug prohibition helped fuel the overdose crisis, caused mass incarceration, eroded civil liberties, and made healthcare unaffordable. Gierach’s solution is to end the regulation of controlled substances and change public opinion about drugs, much like what happened with the legalization of cannabis.

Chronic Pain Reset

Psychologist Afton Hassett, PysD, has compiled a list of 30 simple activities that people in pain can do to improve their lives — from mindfulness walking and paced breathing to healthy sleep habits and random acts of kindness. Perform one activity each day (in 15 minutes or less) and select the ones you like to develop a personalized pain management plan that may lessen your pain, and give your life more joy and a better sense of purpose.

Z’s Odyssey

In his sequel to “Patient Z,” author Stefan Franzen updates the personal story of a loved one with intractable pain who was unable to find effective treatment due to the crackdown on prescription opioids. Patient Z eventually found relief by taking buprenorphine, a widely misunderstood opioid that, when used in its purest form, can be just as potent as morphine.

The Chronic Pain Couple

Author Karra Eloff knows firsthand what chronic pain can do to a relationship. Pain disrupted her romantic and social life, and held her back from personal joy and professional success. To save their marriage, Karra and her husband made simple changes to improve their intimacy and agreed not let illness sidetrack their relationship. If you live with pain or love someone with a chronic illness, this book could help save or restore your relationship.

Burden of Pain: A Physician's Journey through the Opioid Epidemic

Dr. Jay Joshi went to prison for prescribing opioids to an undercover DEA patient posing as a patient. Now a free man and practicing medicine again, Joshi wrote this book as a cautionary tale for both physicians and patients, explaining how he fell victim to DEA misconduct and public health policies that portray doctors as drug dealers.

The Strange Medical Saga of John F. Kennedy

Dr. Forest Tennant looks at the life-threatening medical problems faced by President John F. Kennedy — which the public knew little about until long after his death 60 years ago. Kennedy nearly died as an infant from scarlet fever, and as an adult suffered from adrenal failure, failed back surgeries and autoimmune problems. Tennant says JFK would never have become president without high-dose opioids and a controversial drug cocktail.

CRPS: Learning About the Different Aspects of a Painful Syndrome

This is the fourth volume of a book series by Eric Phillips on Complex Regional Pain Syndrome (CRPS), a complex neurological disease that affects millions of people. The causes and symptoms of CRPS vary from person to person, making its diagnosis and treatment more difficult. After four decades of living with CRPS, Phillips says the biggest problem remains a lack of understanding about the disease by medical professionals. 

Cannabis Lullaby: A Painsomniac’s Quest for a Good Night’s Sleep

Health journalist David Sharp struggled for years with chronic pain and poor sleep caused by “painsomnia.” Then he ate a brownie made with cannabis and slept like a baby. In this book, Sharp shares what he’s learned about cannabis, how to shop for it, what strains work best, how to find the right dose, and who should — or shouldn’t — use cannabis.

8 Steps to Conquer Chronic Pain: A Doctor’s Guide to Lifelong Relief

Dr. Andrea Furlan takes a holistic approach to treating chronic pain, recommending changes in lifestyle, diet, sleep and mindset. Instead of taking opioids and becoming dependent on them, she believes pain sufferers can learn how to “rewire” their brains by controlling their emotions, recharging their bodies and educating themselves about the nature of pain.

Not Weakness: Navigating the Culture of Chronic Pain

After 20 years of coping with Crohn’s disease and autoimmune conditions, author Francesca Grossman finally realized she wasn’t alone after speaking with other women who also suffer silently from chronic pain. In this memoir, Grossman shares what she learned about living and loving with chronic pain while managing work, motherhood, friendships, sexual intimacy and medical gaslighting.

Heal Your Disc, End Your Pain

Dr. Gregory Lutz believes degenerative disc disease can be treated without drugs or surgery through the use of regenerative medicine — using a specialized concentration of a patient’s own stem cells to help heal tears inside the disc. Unlike other treatments for chronic lower back pain, which only provide temporary relief, Lutz says stem cells give long-term results.

These and other books about living with chronic pain and illness can be found in PNN’s Suggested Reading section.  PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

The Trauma-Pain Connection Explored at For Grace’s Women In Pain Conference

By Cynthia Toussaint, PNN Columnist

Four years ago, I was wheeled into my pain management doctor’s office, not to talk about Complex Regional Pain Syndrome, but rather my newest and most dire diagnosis: Triple Negative Breast Cancer (TNBC). I knew I didn’t have a good chance at survival, but didn’t know why I had the most rare and aggressive form of the disease.

I asked Dr. Richeimer why this cancer would appear now, as my oncologist and genetic counselor were baffled. Without pause, he answered, “Cynthia, you’ve been trying to fix your dysfunctional family your entire life. The toll that’s taken on your body is why you have TNBC.”     

Thus began my trauma-informed journey.

I was already aware and intrigued that many researchers were identifying trauma as the main driver for chronic pain. Despite this, I passed on having trauma release treatment because I’d heard it could be triggering. But now that I was fighting for my very existence, I was all in.

In the midst of full-dose chemotherapy, no less, I took to reading and researching everything I could get my hands on about childhood trauma and how it leads to adult on-set chronic illness. On the trauma release front, I jumped into talk therapy and EMDR (Eye Movement Desensitization and Reprocessing), complimenting those treatments with big doses of music, writing, meditation, inner child work and ancestral healing.

I also started focusing my “For Grace” work on the trauma-pain connection. This included interviewing a boatload of experts and survivors as well as collecting and spotlighting lived experiences, all culminating in Friday’s 11th Annual Women In Pain Conference – “The Trauma-Pain Connection: A Path to Recovery and Growth.”

Radene Marie Cook

You see, I now understand that my 40+ years of pain and chronic illness are the result of serious and sustained trauma, suffered primarily during my early development. In short, trauma is not a piece of my chronic pain puzzle. It’s the whole puzzle.

I want to share all that I’ve learned with women in pain, during a day that I hope will launch your own trauma-informed journey, one that I promise will bring you healing and growth.

To start you on your way, our five-hour online seminar, beginning at 10am PT on November 17, will be broken into three sessions led by world-class speakers, panelists and breakout leaders, all who have survived trauma and volunteered their time.

• Session One will examine what trauma is, how it can be passed down generationally, and how it’s a driver for chronic pain.

• Session Two will highlight trauma release and the myriad of effective techniques, methods and strategies used to achieve that end, both practitioner-led and solo.

• Session Three will celebrate what I call the silver-lining of trauma, Post-Traumatic Growth, a process that paves the way for recovery, deeper meaning, new-found strength, and helping others.            

Themed throughout the conference will be the beauty, struggle and resilience of the Native American people. Because I’ve read time and again that this community suffers greatly from generational trauma, the day will be infused with stunning music and photography, compliments of one of our main speakers, Dr. Noshene Ranjbar, a leader of indigenous studies at the University of Arizona. It touched my heart that two of her students put in hours to gift us these sacred elements.

Perhaps the most poignant part of our event will be the extraordinary gift of intensely personal video vignettes sprinkled in from people who’ve traveled the dimly-lit trauma-pain tunnel, found healing through release, and moved on to the light of growth. The courage of these generous souls is a triumph of the spirit.      

This conference was For Grace’s heaviest lift to date. Coming from a chronic pain background, I didn’t know anyone in trauma and it took several years to build a critical mass of relationships. Also, because this conference is the first of its kind, our planning committee had to build it from whole cloth. Perhaps most difficult and most satisfying, was getting people to talk publicly about their deepest, darkest experiences. I know the challenge well because when I recorded my story, I was brought to tears more than once.

It was worth the sweat and tears because we struck gold.

This is the most important topic For Grace has covered. I’m certain that if you do the work, it will be a catalyst for healing and renewed wholeness. Remembering, facing and addressing our past traumas is our best hope to overcome the scourge of chronic pain.

Don’t wait to get a deadly disease to learn, to explore, to discover trauma’s place in your life. You’re braver than you think - and when you use that courage, you’ll be on the path to finding the last piece to your pain puzzle.

You can watch the conference for free at this link.

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.”