How I Learned to Sleep Better and Keep My Mobility

By Madora Pennington

What do you lose when lose your ability to get up, walk, move about, and do things for yourself?

Independence.

Moving your body around requires muscles, stability, balance, good joints, and brain function. If that is lost, you need others to help you do things.

You may not be able to do your own cooking and cleaning. Getting groceries yourself might be too difficult. Even if you get them delivered, you might not be able to put them away. You risk falling and getting injured or not being able to get up. You miss out on social events. You may find yourself isolated and depressed. You’ll need more healthcare services. You might even end up in assisted living.

The number one cause of disability in the United States is loss of mobility, affecting 13% of adults. Many chronic conditions can lead to it: Parkinson's, multiple sclerosis, diabetes, arthritis.

One thing has been shown to slow the loss of mobility for all of them: good sleep.

A 2024 study followed over 70,000 women for eight years. Those that slept enough kept their ability to move and use their bodies. Those that didn’t reported being very sleepy during the day and lost mobility over time.

It seems that no matter what your chronic condition is — or even if you have none – sleeping too little may speed you towards disability.

These results are not surprising. A healthy diet, exercise, and good sleep are accepted as pillars of good health. Improving diet and exercise can be hard, requiring time, effort and education. But solving poor sleep can be a nightmare.

Here are some things I learned from a therapist years ago, when I was having night terrors every night. I would awaken in a state of hyper-arousal, confused about where I was and very afraid. I was diagnosed with PTSD, which is thought to be a disorder of circadian rhythm.

My body, I was told, had lost its sense of when it was time to rest and rejuvenate, and when it was time to be in action and face challenges. The therapist recommended fixing my dysregulated internal clock.

You do that by making sure the bedroom is used for sleep only. That means you avoid hanging out in bed or the bedroom — no eating, no watching TV, no knitting, reading, whatever.

“Can I fold the laundry on the bed?” I asked.

“It would be better to do it elsewhere,” the therapist said. “Stay out of your bedroom during the day as much as possible, so the bedroom itself signals sleepy time.”

Another tip was to avoid bright lights in the hours before bedtime. And to get some red lights to mimic the sun setting.

If you lie in bed feeling anxious and frustrated, you risk training your brain and body that the bed is a stressful place and not for sleep.

If you can’t sleep or go back to sleep, get out of bed and leave the bedroom. Keep the lights low, or even better, make them red. Move around. Unload the dishwasher. Pet the cat. Get right back in bed when drowsiness returns.

Get into bed at the same time every night, before 10 p.m. Set an alarm and get out of bed after eight hours, no matter what. No naps. Don’t confuse the body.

As odd as they seemed at the time, these simple suggestions went a long way in improving my sleep and my whole PTSD phenomena. I still stick to them. I don’t read, relax or watch TV in bed, unless I’m doing it as part of my bedtime routine. If I am sick, I rest elsewhere during the day.

I’ll admit, I do love a weekend nap sometimes. But I only take one if it’s before 2 p.m. Any later than that, and I might not fall asleep easily at night, a habit I do not want to promote.

When I do take a nap, I sleep upright on a bean bag or the couch, with the curtains open and a video playing. That way, my body understands this is a shallow nap – I have not entered a different time zone.

To wake up refreshed and rested is a gift to yourself and those around you. Many issues can prevent regular, deep, restorative sleep. Pain is a sleep interrupter. Antihistamines, benzodiazepines, opioids and alcohol may help put you to sleep, but keep you out of the REM stages of sleep that are needed for repair.

Find knowledgeable practitioners and good advice to help. The right solutions for good sleep are the ones that work for you.

Pain Makes Young Adults More Likely to Mix Cannabis with Alcohol

By Crystal Lindell

A new study reveals that being in pain as a young adult makes you more likely to mix cannabis and alcohol. 

The research, published in the journal Alcohol, looked at 18 to 24 year olds. They found that those with moderate to severe pain were 1.4 times more likely to engage in the co-use of alcohol and cannabis over the next four years, compared to those with no pain. 

The Binghamton University researchers say this is the first study to examine pain as a predictor for co-using alcohol and cannabis. 

Previous research has shown that young adults who mix alcohol and cannabis are more likely to engage in impaired driving, risky sexual behavior, and/or experience mental health problems. 

But that begs the question, which causes which? 

I don’t think we should assume that using cannabis and alcohol together causes mental health issues. Perhaps it is the stress and anxiety of young adulthood – and poorly treated pain – that cause people to seek relief with things like alcohol and cannabis.

Previous studies have shown that about two-thirds (67%) of young adults in the U.S. reported pain in the past six-months, and more than 2 million of them had chronic pain. 

Physical pain in young adulthood can have long-lasting consequences. 

"Pain is of particular concern during emerging adulthood because it directly impacts developmental milestones across multiple domains, and emerging adults with chronic pain report greater isolation from their peers, fewer educational and occupational opportunities, greater anxiety and depression, and a poorer overall quality of life," the authors write. 

All of this really highlights why it’s so important that we fully treat pain in young adults – and really, in everyone who suffers from it. 

Unfortunately, that’s not the framing the authors chose to go with in their paper. Instead, they write that “pain is a unique risk factor for substance use.”

The choice to use “risk factor” in that sentence speaks volumes, although I am glad that they then used “substance use” as opposed to the more judgemental “substance abuse.”

Because that’s the thing, using a substance to treat something is not inherently bad. People use ibuprofen to treat headaches. But we don’t have research papers claiming that “headaches are a risk factor for Advil use.” Or even “having diabetes is a risk factor for insulin use.” 

Like yeah, you think? People use medications that treat their ailment in order to treat their ailment. 

Pain is definitely an aliment – and cannabis and alcohol are substances that do indeed relieve pain. The only reason anyone believes otherwise is because of government framing. 

We have drastically reduced the amount of opioids prescribed, but that doesn’t mean we have drastically reduced the amount of pain that people endure. It’s only natural that people will seek out alternatives. Younger people tend to have a more difficult time convincing doctors to treat their pain, meaning they are more likely to be left to fend for themselves. 

Alcohol and cannabis may not be the best choices for pain relief, but they may be the only ones available.

People in pain — at any age — will always look for ways to alleviate that pain. And the more options people in pain have, the more likely it is that they’ll find what works best for their body and their circumstances, while causing the least amount of negative side effects. 

If their only effective option is alcohol mixed with cannabis, then that’s what they’ll use. If the government and medical community don’t like that, then they should give them more options. 

Virtual Nature Scenes May Help Relieve Minor Pain

By Crystal Lindell

Nature scenes may help relieve minor acute pain – even if you only “see” the nature scene in a virtual reality program. That’s according to new research published this week in, appropriately, the journal Nature Communications. 

Researchers administered mild electric shocks to cause a pain response in 49 healthy volunteers, and then showed them a virtual reality scene that was either a nature scene of a lake, an urban cityscape, or an indoor office setting.  

The researchers then used both brain scans and self-reported pain reactions to analyze whether any of the scenes reduced pain. 

NATURE COMMUNICATIONS

They found that areas of the brain that handle physical pain signals were less active when people saw the virtual nature scene. Self-reported pain also was lower in the nature vs. urban and indoor settings. 

I will admit that, at first, I didn’t want to believe that “virtual nature scenes” could have the same mental effect as actual, living nature. But then I quickly realized that I did enjoy virtual nature scenes, fake or not. 

Every morning, after watching the news, I open the YouTube app on my Roku and select a calming nature scene to play on the TV throughout the day. In the winter, it’s a roaring fire; in the spring, a calming rainy scene; in the summer, ocean waves; and in the fall, autumn leaves rustling. 

While I’m not sure if any of the YouTube nature scenes help my physical pain, I do think they help calm my anxiety – in the same way that watching the news usually increases my anxiety. 

Of course, the mostly Austrian research team couldn’t resist slipping in a little anti-opioid messaging, writing: 

“Besides advancing our basic knowledge, such research may have considerable importance for efforts to complement pharmaceutical treatment approaches, with their well-documented negative side effects and addictive properties.”

While I’m glad they used the word “complement” instead of “replace,” it’s their mention of “negative side effects and addictive properties” that makes it clear that they do want this research to eventually lead to non-opioid pain treatments. 

But when you actually look at the study, you’ll see that it very specifically looks only at minor, acute pain. So this research should not be used to reduce pain medications for people with chronic pain. 

I’m not accusing the authors of wanting that, since they clearly think more studies are necessary. But in our current opioid-phobia environment, I do have concerns about doctors seeing the study headline and giving patients “go look at a lake” advice to reduce medication-based pain treatments.

Ideally, research like this would be used responsibly, inspiring healthcare providers to add more natural elements to places like doctor’s offices and even nursing homes – whether those nature elements are virtual, digital or physical paintings. 

Previous research has found that patients recovering from surgery used fewer analgesics and recovered faster if their hospital window gave them a view of trees, rather than a brick wall.

However, I remain extremely doubtful that this type of research will ever result in finding a way to use nature elements as an effective pain treatment in any way that even reduces the need for pain medication.

Could a Popular Weight Loss Drug Reduce Pain?

By Madora Pennington

“When I look around at this room, I can't help but wonder. Is Ozempic right for me?” Jimmy Kimmel quipped to his audience of beautiful people when he hosted the Academy Awards last year.

It seems like everyone is taking Ozempic or drugs like it and losing weight. That class of drugs, known as GLP-1 medications for the hormones they enhance, slow digestion and promote feelings of satiety or fullness. As a result, people eat less and lose weight without the struggle of trying to stick to a diet. You feel fuller more quickly, eat less, and shed pounds.

GLP-1s are proving to have a lot more beneficial effects on the body than just weight loss. A recently published study found that low doses of semaglutide (the active ingredient in Ozempic and Wegovy) reduced alcohol cravings in people diagnosed with alcohol use disorder. When taking the weight-loss drugs, their alcohol intake was less.

In addition to food and alcohol, semaglutides also seem to reduce cravings for nicotine, cocaine, amphetamines and opioids, as well as problematic behaviors like gambling and compulsive shopping. Because the drugs reduce the reward chemical dopamine in the brain, those taking them are less motivated by their own brain signals to have another drink, put another item in their cart, have a hit of a drug, and so on.

Could GLP-1s also help pain patients?

The most obvious way a GLP-1 might reduce pain is through weight loss. Carrying excess weight causes additional wear-and-tear on the back and joints in the lower body. Every extra pound translates to four pounds of force on the knees, so even a modest amount of weight loss has the potential to reduce joint damage and pain.

Excess weight also limits range of motion, restricting joints and making it difficult for a person to exercise. Losing weight can lead to more physical activity, which can lessen pain and help keep the brain, joints and body healthy.

Another benefit of GLP-1 medications is that they lessen inflammation. In a recent study published in The New England Journal of Medicine, semaglutide provided substantial pain relief for patients with obesity and knee osteoarthritis. The exact mechanism of action is unclear, but researchers think its because the drug reduces inflammation and loss of cartilage in the knee joint.

“The findings confirm that substantial weight loss causes an often dramatic reduction in pain. If the effects shown in this trial are mediated by factors other than weight loss alone, new therapeutic avenues may be available,” David Felson, MD, a Professor of Rheumatology at Boston University School of Medicine, wrote in an editorial.

Other studies suggest that semaglutide could be a possible treatment for Alzheimer’s and Parkinson’s disease, as it lowers neuroinflammation, reduces plaque deposits in the brain, and helps generate new neurons. However, it’s only a supposition at this point that GLP-1s could mitigate the damage that chronic pain causes to the brain.

GLP-1s might help modulate pain in other ways. Both humans and animals turn to sweets and fat rich foods when in pain. Because GLP-1s regulate hunger and digestion, it’s possible they can improve pain. Tests on mice indicate that these drugs influence a certain nerve pain receptor. While definite answers and proof are a long way off, this discovery suggests new approaches to treating pain.

Before you run out to try them, be aware that Ozempic and other GLP-1 drugs carry risks. They often cause nausea and vomiting, and rare but serious problems such as pancreatitis, gastroparesis (paralysis of the stomach), and blindness.

They are also expensive. Insurance tends to limit semaglutide coverage to diabetics, so if you pay in cash without any discounts, 2 mg of Ozempic will cost about $1,050. Cheaper, generic semaglutides made overseas are available, as well as compounded versions made in-house by pharmacies. But those formulations have not been evaluated by the FDA and their quality is uncertain. 

Where Have All the Pain Doctors Gone?

By Pat Anson

In recent years, it’s become increasingly difficult for a patient in pain to find a new doctor. Many physicians have stopped treating pain, retired early or switched specialties, rather than run the risk of being investigated or even put in prison for prescribing opioids.

In a recent PNN survey, one in five patients said they couldn’t find a doctor to treat their pain. Others said they were abandoned or discharged by a physician (12%) or had a doctor who retired from clinical practice (14%).   

“All the doctors in this area are justifiably terrified to involve themselves at all with opiates,” one patient told us. “It's now going on 6 months that I've been hunting for a doctor who isn't afraid to continue my former opiate regimen, which only made my pain tolerable, allowing me some small quality of life. I don't know what to do next and I am truly at my wits end.”

“This year my doctor retired, then 8 months later the hospital closed the pain clinic. I'm waiting to get into a new pain clinic that is 200 miles away. Every local doctor refuses to prescribe my pain meds, so now I'm forced to travel 4 hours each way to see a new doctor,” another patient said.

“I have to fly to another state for my medical care,” said another person in pain. “Many patients I’ve met over the last ten years have not had the same care. They can’t afford the medical treatment and can’t find doctors to help.”

A new study suggests the problem is only going to get worse, because medical schools are seeing fewer anesthesiology residents applying for fellowships in pain medicine. The number of applications fell 45% from 2019 to 2023.

“While the demand for pain specialists is growing in the U.S., the pipeline of new doctors to fill these roles is drying up,” says lead author Scott Pritzlaff, MD, an associate professor in the UC Davis Department of Anesthesiology and Pain Medicine and director of the school’s Pain Medicine Fellowship program.

Pritzlaff and his colleagues analyzed data from the National Resident Matching Program (NRMP), Electronic Residency Application Service (ERAS) and a special report from the American Association of Medical Colleagues (AAMC) to see trends in medical specialties.

Their findings, recently published in the journal Pain Practice, show significant changes in specialties that are being driven by market forces and professional preferences. While demand and pay scales for general anesthesiologists have increased, the number of anesthesiology trainees applying for pain medicine fellowships is dropping. The trend is most notable among female residents applying for the specialty, which has fallen by 27.5%, compared to a 9.8% decline in male applicants.

“Fewer doctors choosing pain medicine means longer wait times, rushed care and fewer treatment options for patients suffering from chronic pain,” Pritzlaff said. “In a country already grappling with an opioid crisis, this could leave millions without the specialized care they need to manage their pain safely and effectively.”

Co-author Chinar Sanghvi, MD, says the drop in applications is partially driven by opioid lawsuits against drug makers and criminal cases against doctors, which have made medical residents and trainees leery about practicing pain medicine.

“For trainees observing this during their formative years, it may have created a perception of pain medicine as a high-risk specialty — both legally and ethically,” said Sanghvi, an assistant clinical professor in the UC Davis Department of Anesthesiology who mentors first and second year-medical students. “This fear of litigation, coupled with the stigma surrounding opioid prescribing, could discourage aspiring physicians from entering the field.”

The data also revealed some upward trends. Applications from residents for physical medicine and rehabilitation fellowships rose almost 33%, while residents specializing in emergency medicine increased by 190%.

General anesthesiologists have some of the best paying jobs in medicine, with median salaries of nearly $499,000 a year. For an anesthesiologist to specialize in pain medicine requires an additional year of training and pays less. With high demand and higher salaries, many doctors skip the extra training and enter the workforce right after completing their anesthesiology residency.

To help attract new residents, the UC Davis Health Division of Pain Medicine increased its recruiting efforts and became more active on social media. The efforts helped UC Davis fill its fellowship slots in pain medicine despite the national downturn.

“Pain medicine is caught in a strange paradox. On one hand, pain is one of the biggest public health problems in America, costing billions annually. On the other, the field is underappreciated and underfunded,” said senior author David Copenhaver, MD, a professor in the UC Davis Department of Anesthesiology and Pain Medicine and chief of the Division of Pain Medicine. “This decline isn’t just about numbers — it’s a wake-up call for the future of pain care in America.”

DEA Keeping Supply of Rx Opioids Unchanged in 2025

By Pat Anson

The Drug Enforcement Administration says it can’t do anything about shortages of opioid pain medication at U.S. pharmacies and will keep the 2025 opioid supply essentially unchanged from this year’s levels.

Under the Controlled Substances Act (CSA), the DEA sets annual aggregate production quotas (APQs) for every drug maker, in effect telling them the amount of opioids and other controlled substances they can make every year.

The APQs for 2025 were recently published in the Federal Register after a public comment period that received nearly 1,900 responses, many from patients and providers worried about further cuts in the opioid supply.  

“DEA received a significant number of comments from pain advocacy groups, hospital associations, health professionals, and others who raised concerns over the proposed APQs for certain opioids in 2025,” DEA said. “After considering all of the relevant factors, DEA has determined… that U.S. manufacturers will need to manufacture approximately the same amount of those opioids in 2025 as in 2024 in order to meet legitimate needs.”

Although the FDA advised the DEA there will be a 6.6% decline in the medical need for opioids in 2025, the DEA adopted only minor reductions for several widely used opioid medications. They are the same amounts proposed by the agency in October.

DEA Opioid Production Quotas for 2025

• Oxycodone:  0.137% decrease

• Hydrocodone: 0.081% decrease

• Morphine: Unchanged

• Codeine: Unchanged

• Hydromorphone: 0.015% decrease

• Fentanyl: 0.0025% decrease

Although the reductions are tiny compared to previous years, 2025 will still be the ninth consecutive year that DEA has cut the supply of opioids. Since 2015, DEA has reduced production quotas for oxycodone by over 68% and hydrocodone by nearly 73%.

DEA acknowledged receiving many comments from pain patients who said their local pharmacies were often out of opioids, forcing them to contact additional pharmacies and travel further to get their prescriptions filled. DEA said those issues were out of its control.

“Drug shortages may occur due to factors outside of DEA's control such as manufacturing and quality problems, processing delays, supply chain disruptions, or discontinuations,” the agency said.  “Currently, FDA has not issued notice of any nationwide shortages of the types of opioid medications mentioned by these commenters.”

The FDA and DEA may not be tracking opioid shortages, but the American Society of Health-System Pharmacists (ASHP) is.

Opioids currently listed in short supply by the ASHP include oxycodone/acetaminophen tablets, oxycodone immediate-release tablets, hydrocodone/acetaminophen tablets, hydromorphone tablets and solution, fentanyl solution, and morphine solution.

Most opioid medications are generic and cheap to make, but they have low profit margins and come with high risks. Teva Pharmaceuticals, a large generic drug maker, recently discontinued production of oxycodone and potent fentanyl lozenges. The medications were entangled in costly litigation that resulted in Teva paying $4.25 billion to settle opioid liability lawsuits.

Opioid shortages at the pharmacy level are also linked to litigation. Under the terms of a 2022 settlement with drug distributors, opioids are tightly rationed at many pharmacies, resulting in patients with opioid prescriptions being unable to get them filled because pharmacies are out of stock.

Here again, the DEA said the shortages are out of its control and claimed its prosecution of doctors for “unlawful” opioid prescribing was a non-issue.

“Patients and medical professionals may notice specific drug products are out of stock in particular areas; however, DEA cannot dictate DEA registrants' distributions of drug products,” the agency said.

“Additionally, DEA's regulations do not impose restrictions on the amount and the type of medication that licensed practitioners can prescribe. DEA has consistently emphasized and supported the authority of individual practitioners under the CSA to administer, dispense, and prescribe controlled substances for the legitimate treatment of pain within acceptable medical standards.”

Quotas Don’t Prevent Overdoses

For patients reliant on opioids, including those with late-stage cancer, being unable to fill a prescription means withdrawal, uncontrolled pain, and little quality of life.

A palliative care physician recently wrote an op/ed in STAT about “Teresa,” a patient in her mid-60’s with advanced cancer that spread to her abdomen.

“Only her prescription morphine gave her the relief she needed to function and enjoy some small pleasures, like walking her dog in the park,” wrote Dr. Rebecca Rodin, an assistant professor at the Icahn School of Medicine at Mount Sinai.

“But one day, her pharmacy didn’t have her morphine in stock, nor did five other neighborhood pharmacies that she went to. I called another three pharmacies before finding one with a two-week supply available — but it was a 40-minute drive from her home.”   

Rodin says the real culprits in the overdose crisis are illicit fentanyl and other street drugs – not prescription opioids. And no amount of buck passing by the DEA will fix that problem.

“Quotas and resulting shortages of prescription pain medicines are not helping to prevent overdose deaths,” said Rodin. “Quotas are simply turning vulnerable patients with serious illness into collateral damage in a misguided effort to address the opioid epidemic.”   

After Years of Foot Dragging, CDC Plans Review of Opioid Guideline

By Pat Anson

Eight years after releasing its controversial 2016 opioid guideline and two years after revising it, the CDC is finally making plans for a review of the guideline’s impact on patients, caregivers, doctors, and the practice of pain management.

In a notice published in the Federal Register, the CDC said it would open a 30-day public comment period on a “mixed-method quasi-experimental approach” to evaluating the updated 2022 guideline.

In plain English, the CDC plans a web-based survey of about 200 clinicians, and individual interviews with 10 clinicians, 2 dentists, 3 health system leaders, 3 insurers, 3 professional association leaders, and 3 medical board leaders. In addition, CDC will interview up to 15 patients and 15 caregivers in focus groups.

The agency did not indicate how the participants or organizations will be selected, or what questions will be asked.

“CDC is comprehensively evaluating the uptake, implementation, and outcomes of the 2022 CDC Clinical Practice Guideline on evidence-based care for pain management to understand its impact,” the agency said. “The evaluation includes dissemination and impact of the 2022 CDC Clinical Practice Guideline through population-wide changes in prescribing practices for opioids and medications for opioid use disorder.”

This is actually the second time CDC has published a public notice about the guideline review. Only two public comments were received after a similar notice was published in the Federal Register on October 1, which the CDC made no effort to publicize.

‘Timing Is Very Odd’

It’s not clear why a second notice was published during the holiday season and in the final weeks of the Biden administration. CDC did not immediately respond to a request for comment.

“The timing is very odd, and almost everyone missed the opportunity for open comments earlier this year,” said Chad Kollas, MD, a palliative care physician and pain policy expert.

“Few states have backed off from overly restrictive prescribing laws that were created based on the 2016 Guideline. I think that’s the main opportunity here, documenting the failure to implement the revised recommendations in the 2022 guidance. It’s unclear how CDC plans to determine who will get an opportunity to respond in the proposed study, so transparency remains troublesome for them.”

The CDC was slow to acknowledge the harm caused by the 2016 guideline. Although voluntary, the agency’s recommendations were widely implemented as mandatory by states and law enforcement agencies, resulting in patients having their opioid medication reduced or cutoff, and doctors being prosecuted for exceeding the guideline’s dosage recommendations.

To address those issues, CDC issued a revised guideline in 2022. But many of the problems caused by the original guideline linger.

“The 2016 guidelines led to a variety of restrictive policies, including limitations on opioid dosages. These measures created significant barriers for patients trying to access pain care and made it more challenging for physicians to prescribe necessary medications,” Donald Arnold, MD, President of the American Society of Anesthesiologists (ASA) wrote in a letter to the CDC, one of the two public comments made in response to the October 1 public notice.

The ASA surveyed its members on the impact of the 2022 revised guideline. Over half (56%) thought it was “somewhat effective” in reversing the harm caused by the 2016 guideline, while 40% thought it was ineffective.

A PNN survey of over 2,500 patients, providers and caregivers also found mixed reviews of the 2022 guideline. Only 39% of respondents thought it was “improved” or “much improved” over the original guideline.  Most respondents said it was about the same or even worse.

‘Same Problems Still Exist’

The CDC never conducted a comprehensive review on the impact of the 2016 guideline, but it did hire a consulting firm to improve its image after the agency was widely criticized for its secrecy and lack of transparency during the guideline’s development process.

A former CDC epidemiologist was so dismayed by the agency’s lack of accountability that he wrote a book about it, “Greed to Do Good: The Untold Story of CDC’s Disastrous War on Opioids.” Dr. Charles LeBaron says CDC leadership was blinded by its own hubris.

“The problem was not looking at the (guideline) sufficiently quantitatively and then not checking the consequences, or at least responding to the consequences when they're brought to your attention,” LeBaron told PNN. “Many of the same problems continue to exist, even though the personalities are completely different, and there are still significant restrictions on people in chronic pain for no apparent benefit.”

The personalities will change yet again when the Trump administration takes office on January 20. Conservative activists have made clear they want a major restructuring of the CDC, returning the agency to its core mission of collecting and disseminating data on communicable diseases. They want the CDC to stop telling people what to do, and to leave medical guidelines to professional societies and state medical boards.

A Pained Life: Can They Feel What We Feel?

By Carol Levy

How many times have I seen a post or comment in a chronic pain support group that read: “I wish the doctor (or my family, colleagues, friends) could go through this to really understand how I feel.”

I also wish they could, but is there any way such a thing could be accomplished?

Then I read about a course at a Japanese medical school, in which students pretended to be patients and were hospitalized for two days and one night. Students learned firsthand the stress, anxiety and loss of control that comes with being a hospital patient — like being poked and prodded, being told when to sleep, when it was time to get an x-ray, to have blood taken or bandages changed.

Students also observed “the distress of other inpatients” and the “psychological pressure” they felt from physicians. This was meant to enhance their empathy skills and to further their professional development.

It sounds like a good idea. But it's not reality.

Maybe in some form, the course replicates Philip Zimdardo's 1971 prison experiment, in which Stanford students were assigned to be prisoners or guards in a simulated prison. The study was meant to focus on the power of roles and rules, but was ended early because of the behavior that emerged in both groups.

Very quickly the students who were “guards” acted like guards by asserting their control and abusing their power. And many of the “prisoners” acted like prisoners, showing signs of distress from the powerlessness that comes from being ruled by guards

Our pain can also make us feel powerless, especially when it comes to treatment and getting the medications that we need. In that regard, we are indeed powerless. The doctors and pharmacists have all the power.

When we are hospitalized, it often intensifies that feeling of powerlessness. We are “imprisoned” in the hospital and not allowed to leave until someone in power gives us permission. We are in the hands of people who decide what we can do, where we can go, and if our cries of pain will be attended to or not.

They may be called doctors or nurses, but in a very true sense they are guards. Our freedom and health in are in their hands.

Is there really a way to replicate for others how we feel, what we go through?

In a promo for the new TV series “Brilliant Minds,” Dr. Wolf, the main character, says he wants to know what his patients are feeling, so he can feel it himself.

My first thought was that would be great if it was doable. But then I thought about it more deeply. There is no way it could work. A doctor can go into the hospital as a pretend patient, even allow himself to have medically induced pain, but they will always know it is just an experiment. Their pain will end, they can go home when they want, and they will feel fine.

It would make life so much easier for us if others could feel our pain. Absent compassion and empathy, I don't see how it is possible.

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. 

Opioids Are Effective at Treating Pain. Just Ask My Family

By Crystal Lindell

What if I told you that there was a medication that made it possible for my grandma to live at home instead of a nursing home? 

And that the same medication allowed my uncle to endure prostate cancer treatments long enough to see his cancer go into remission. And that it helped my mom avoid pneumonia after hip surgery. Or that this medication is the only reason I’m pain-free enough to be able to write this column?

But that’s not all. What if I told you the same medication helps me take care of my cats, as well as the cats at the local animal shelter where I volunteer? 

What if I told you that doctors hated this medication? And that many of them also hate anyone who takes it?.

In an age of opioid-phobia, it seems a lot of people – doctors in particular – have forgotten why opioid pain medications like Norco exist in the first place. And why they are such a miracle drug.

Over the summer, my grandma fractured her foot. After a couple of weeks in the hospital, she was transferred to a rehab facility to start the healing process. In mid-October, she was finally cleared to put some weight on her foot again, and last week she was able to come home. 

But she’s still not fully recovered and every movement still feels like climbing a mountain. In fact, standing up to go from her chair to the commode would still be impossible for her, if not for one very specific medical intervention: a 5mg hydrocodone tablet.

Yes, just one of those pills every six hours makes it possible for her to stand up to use the bathroom, walk to the kitchen, and visit with her new great-grandchild. 

Too bad her doctors are doing everything possible to refuse to prescribe it for her. Each one keeps pushing her off to a different specialist that they claim should actually be giving them to her.

The entire situation is made all the more frustrating because her chronic health issues mean she’s not allowed to take the pain medication most doctors try to push on patients: ibuprofen. 

Not to mention the fact that – at 82 years old – the main reason that doctors cite for refusing to prescribe opioids to my grandma doesn’t apply. At her age, she’s not likely to suddenly develop compulsive use behavior. And if she did, why would it matter? 

Doctors will sometimes claim that opioids aren’t effective at treating pain long term. But if a patient says they are still effective, then clearly that doesn’t apply.

Here we are in 2024, and we as a civilization have managed to harness the power of the poppy plant to such an extent that we can use it to help elderly patients enjoy their final years at home with loved ones, instead of being stuck in a depressing nursing home. But we refuse to use it. 

I’m tired of having to spend so much time countering people who think opioid pain medications are the root of all of society’s ills. That’s just not the case. Unfortunately, their constant complaints have managed to work the refs, so now we have to waste time begging for the bare minimum in pain treatment. 

In fact, if those same people would just look around a little bit, they would see the truth: opioids help millions of people lead better lives. And, if anything, they should be prescribed more, not less. 

Women with Endometriosis Often Miss School and Work Due to Pain

By Dr. Rasha Al-Lami

More than two-thirds of women with endometriosis missed school or work due to pain from the condition, in a study of more than 17,000 women between the ages of 15 and 44 in the U.S. That is a key finding of new research published in the Journal of Endometriosis and Uterine Disorders.

Our study also found that Black and Hispanic women were less likely to be diagnosed with endometriosis compared with white women. Interestingly, women who identified as part of the LGBTQ community had a higher likelihood of receiving an endometriosis diagnosis than heterosexual women.

We used data from the National Health and Nutrition Examination Survey, which is administered by the Centers for Disease Control and Prevention, for the period 2011 to 2019. The survey data use adjusted weights to account for the racial composition of U.S. society, meaning our sample of 17,619 women represents 51,981,323 women of the U.S. population.

We specifically examined factors related to quality of life, such as poverty, education and functional impairment, as well as race and sexual orientation.

Endometriosis is a chronic, often painful condition that affects approximately 10% of reproductive-age women worldwide. It occurs when tissues that would normally line the inner surface of the uterus instead occur outside the uterus, such as on the ovaries or even in distant organs such as the lungs or brain. These abnormally located lesions respond to hormonal changes during the menstrual cycle, causing pain when stimulated by the hormones that regulate the menstrual cycle.

Black and Hispanic Women Less Likely to Be Diagnosed

Our study sheds light on how endometriosis, despite its prevalence, remains underdiagnosed and underresearched. We found that 6.4% of reproductive-age women in the U.S. had an endometriosis diagnosis. More than 67% reported missed work or school, or having been unable to perform daily activities, due to pain associated with endometriosis.

Our study highlights disparities in the diagnosis and management of endometriosis among different racial groups. Black women had 63% lower odds of getting an endometriosis diagnosis, and Hispanic women had 55% lower odds compared with non-Hispanic white women. This disparity may reflect historical biases in health care, pointing to the need for more equitable practices.

In addition, our study underscores the importance of considering women’s health across diverse population subgroups, with particular attention to sexual orientation. We found that non-heterosexual lesbian, gay, bisexual, transgender and queer women had 54% higher odds of receiving an endometriosis diagnosis compared with straight women. Our study was the first to examine endometriosis likelihood among non-heterosexual women at the national level in the U.S.

We found no significant association between endometriosis and other quality-of-life indicators such as poverty, education or employment status, which suggests that the condition affects women across various socioeconomic backgrounds.

Our work adds to the growing body of evidence that Black women are less likely to be diagnosed with endometriosis and that their reported pain symptoms are often overlooked.

Explanations for this inequity include health care bias against minority women and limited access to medical care among Black women. Research also shows that many medical professionals as well as medical students and residents believe that Black women have a lower pain threshold compared with the white population.

This is another possible reason that pain symptoms among Black women with endometriosis get neglected. Researchers from the U.K reported the same findings, attributing these disparities to systemic bias and inequitable medical care.

Another study estimates that the lifetime costs associated with having endometriosis are about $27,855 per year per patient in the U.S., costing the country about $22 billion annually on health care expenditures.

Rasha Al-Lami, MD, is a women’s health researcher at Yale University. 

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

Flawed Mayo Clinic Study Promotes Opioid Myths

By Crystal Lindell

A new study has been released analyzing why patients start taking opioids — but all the research actually does is perpetuate harmful myths about opioids and the patients who use them. 

The study, which was just published in the Journal of Pain, was conducted by researchers from the Mayo Clinic and the National Center for Complementary and Integrative Health. 

The researchers say this is “the first study to present nationally representative rates of incident prescription opioid use.” But it’s the headline from a Mayo Clinic article about the study that clarifies what the authors were actually trying to get at. It reads: “Who is choosing to use prescription opioids?”

“Choosing” – as though patients have any choice about whether or not they use opioids. 

Opioid medications are not sold over the counter, and many doctors today do everything possible to avoid prescribing them. So the idea that any patient can walk into a doctor’s office and “choose” opioids over alternative treatments is wildly naive, at best. 

I’ll go a step further and somewhat defend the doctors here: if a doctor is prescribing opioids in the current opioid-phobia environment, they are not doing it as a first-line treatment. They’ve  already tried non-opioid medications and non-pharmaceutical therapies, which didn’t work.

But let’s take a step back and look at exactly what the authors of the study claim their research found. In a nationwide survey of nearly 10,500 people conducted in 2019 and 2020, about 4% started using prescription opioids. Four percent isn’t much, but it was enough to surprise the researchers.

"One of the things that we noticed is that people are still utilizing opioids as an early resort or first line treatment, before trying non-opioid treatments first, which goes against best practice guidelines in healthcare," said lead author Ryan D'Souza, MD, a Mayo Clinic anesthesiologist. "This is a wake-up call to how high the incidence rate among new users continues to be."

A bit of a jump in my opinion, but let’s go with that. What are these "early resort or first-line” treatments that D’Souza and his co-author want patients to try before resorting to opioids? As they explain: "Nonpharmacologic modalities, over-the-counter medications, and other nonopioid analgesics as initial treatment for pain."

“Nonpharmacologic modalities” means things like physical therapy and cognitive therapy. “Over-the-counter medications and “nonopioid analgesics” means pain relievers like ibuprofen and acetaminophen (Advil and Tylenol) or prescription medications like gabapentin.

Well, I have some great news for the researchers who did this study: Every single patient asking a doctor for opioid pain medication has already tried Advil. 

It’s also worth noting that some of the data was collected in 2020, which is infamous for being a year that greatly disrupted medical care because of COVID. It was the kind of disruption that literally limited how much access patients had to physical therapy and in-person cognitive therapy. So yes, some patients may have resorted to opioids during that time.

Also, physical and cognitive therapy are both significantly more expensive than hydrocodone, even if you have insurance. Both therapies require multiple sessions — sometimes in the same week — and most insurance companies require a copay for each session. So the difference in price can be dramatic, not to mention the cost of time away from work and family to go to appointments. 

The other major flaw in their list of alternatives is that none of them are great at treating pain quickly. Physical therapy may help over a period of weeks or months, but it’s not going to be much help to an arthritis patient who needs to get work on Monday. And there’s little data showing medications like gabapentin are effective at all when it comes to pain. 

In fact, the researchers found that “ineffective pain treatment” was the primary reason people were given a new prescription for opioids. Other leading factors for opioid use are three or more visits to the ER in one year; having four or more painful conditions; and having two or more disabilities.

Anyone with that many strikes against them probably needs opioids, yet the authors are still troubled that “some participants are using opioids… instead of following various best-practice guidelines.”

As is the case for most medical research, both the data collection and the conclusions drawn by the authors seem to have been done with zero input from any actual patients. That’s the foundational problem for the entire study. None of the conclusions factor in real life situations. 

Studies like this one that demonize every single use of opioids would have a lot more sway if there were actually effective opioid alternatives available. As it stands now, patients do not have an option between “an effective, non-addictive pain medication” and “an effective, always addictive pain medication.” 

In reality, the options are usually between “ineffective, non-addictive medication” and “effective and rarely addictive medication.” 

Anyone who’s actually experienced real pain will tell you that when those are the choices, the “effective” medication wins every time. 

It’s so exhausting that we are still dealing with such flawed thinking from the medical community when it comes to opioids. I understand that opioids make an easy villain in healthcare, but opioids are not a magical, always-addictive medication — no matter how many times the medical community tries to convince us otherwise.

I know this because most patients who undergo general anesthesia are routinely given the opioid medication fentanyl — and none of them wake up post-op suddenly addicted to opioids. In fact, most people who take opioids in any setting never develop problematic use.

So we would be wise to remember that the real villain isn’t opioids. It’s the problem they’re trying to address: pain.

The Whims of Pharmacy Pricing

By Crystal Lindell

I pay cash for my prescriptions every month because I don’t currently have health insurance. 

I got laid off in 2022 and I’ve been freelancing to make ends meet since then, which makes it difficult to get health insurance. I know, not a great situation for a chronically ill patient to be in, but as Gambino said, “This is America.”

Thankfully, the cash prices for my prescriptions aren’t very high, so the situation has been manageable. For my main pain medication, which is not a name brand, I’ve been paying just $36 a month for over two years.

Unfortunately, I recently found out how vulnerable I am to price changes for prescriptions. 

My most recent refill was ready last week, but I was dealing with a pain flare — likely caused by our changing weather here in the Midwest. So I asked my fiance to pick it up for me in an effort to avoid having to endure a taxing trip out of the house.

But while I was at home waiting, he called to tell me that the pharmacy had just told him that there was a new price this month: $86. 

That’s a $50 increase! It literally went up nearly 139 percent! With no warning! 

Doing a little back-of-the-napkin math, because it’s a monthly prescription, that increase results in an extra $600 a year! Not to mention the fact that it also means the price could increase again next month. And then again the month after that. 

So I called the pharmacy to try to figure out what was going on. I spoke to two different people and they both told me that it’s the new price and there’s nothing they can do. 

One of them claimed the price went up months ago, but after I explained to her that I literally got the exact same medication four weeks ago for $36, she changed her story and said the price increased over the weekend. Or it may have increased overnight. 

She insisted there was nothing they could do about it. 

Since it’s a controlled substance and I have a pain patient contract with my doctor, I’m not allowed to have the prescription transferred to a different pharmacy to get it for a cheaper price. It’s one of those opioid regulations that was supposedly launched to keep patients safe, but it has instead resulted in pharmacies having their own monopolies. 

As a freelancer, my bank account balance varies dramatically, depending on which projects I’ve recently been paid for and which ones I’m waiting on payment for. So I didn’t have the full $86 in my account to cover the medication that day. 

Thankfully my mom lives nearby, and I’m able to borrow some money from her when situations like this occur. So my fiance drove home, and then I drove to my mom’s to pick up some cash from her. I then drove to the pharmacy myself to get the medication — all while still dealing with a spike in my daily pain. 

When I got to the counter, I recognized the pharmacist who was working as someone who’s been helpful to me in the past. So I took a chance and said, “Yeah, so the price went up dramatically? Huh?”

She looked at the prescription price and then quietly went to the computer for like 10 minutes to look into it. Then she came back over to me and said, “I got it back down to $36. Here you go, you can pay up front.”

I was half in shock and half worried that if I said the wrong thing, the price would go back up, so I didn’t ask how she did it. I just took the package and went up front to pay, hoping it would still be $36 next month.

I know I should be sharing the details of why it went up and then back down again, but I honestly don’t even know what they are. And I don’t think that those details are necessarily the point. 

The real point is that pharmacies have way too much power in pricing and the entire process is purposely opaque to make it difficult for patients to navigate. After I shared this story with some close friends the day it happened, many of them responded by telling me similar stories about arbitrary pricing at their pharmacies. 

The initial price increase should not have even happened in the first place. What patients pay for medication should not be dependent on the whims of pharmacy staff, especially when patients like me are not allowed to shop around for a more competitive price due to controlled substance regulations. 

As far as I can tell, there are no laws regulating how much pharmacies can increase prices for medication, nor any law requiring them to give a certain amount of notice when they do. If there are laws about such things, they aren’t publicized in any meaningful way. If patients don’t know they have a right, does the right even exist?

I don’t know if there’s any good advice for patients to take from this experience. Most patients on controlled substances can’t risk angering their pharmacist, so it’s understandable they would just choose to pay a higher price if that’s what the pharmacy wanted. 

The situation reminds me of someone else that sells drugs: street dealers. But at least with street dealers, customers usually have the option of shopping around for a better price. 

Racial Myths About Pain Are Embedded in Artificial Intelligence

By Crystal Lindell

A new study published in JAMA found that artificial intelligence (AI) programs are encoded with racial and ethnic biases – just like humans – when it comes to evaluating a patient's pain. 

The authors said they wanted to look into the issue because it's already well-known that doctors underestimate and undertreat black patients’ pain compared to white patients. 

To study how that may impact AI, researchers had 222 medical students and residents evaluate two different patients, one black and one white, who were both experiencing pain. They also had them evaluate statements about how race may impact biology, some of which were myths and some of which were true. 

Then the researchers had two Large Language Models (LLMs) widely used in AI — Gemini Pro  and GPT-4 — do the same by feeding them patient information reports, and then having them evaluate statements about how race impacts biology. 

There wasn’t much difference between the humans and the AI models when it came to rating patients’ pain, regardless of race. Both the humans and the AI models rated the patients as having similar pain scores. 

However, both the humans and AI systems had some false beliefs about race and patient pain. Gemini Pro fared the worst, while GPT-4 and the humans came out relatively similar. 

Specifically, Gemini Pro had the highest rate of racial myths (24%). That was followed by the humans (12%) and GPT-4 (9%).

“Although LLMs rate pain similarly between races and ethnicities, they underestimate pain among Black individuals in the presence of false beliefs,” wrote lead author Brototo Deb, MD, a resident at Georgetown University–MedStar Washington Hospital Center.

“Given LLMs’ significant abilities in assisting with clinical reasoning, as well as a human tendency toward automation bias, these biases could propagate race and ethnicity–based medicine and the undertreatment of pain in Black patients.”

Deb and co-author Adam Rodman, MD, says their study corresponds with previous research showing that AI models have biases related to race and ethnicity. 

Given how AI is increasingly used in clinical practice, there’s concern that black patients’ pain will continue to be undertreated, making them less likely to get opioids and more likely to be drug tested. 

There’s a common belief that AI will eliminate racial bias because computers are seen as more logical than humans. However, AI is encoded with data provided by humans, which means as long as humans have bias, AI will too. 

The real problem is if doctors start to rely too much on AI for patient evaluations, there’s a potential for real harm. Especially if doctors use AI to justify their medical decisions under the false belief that they are unbiased. 

It’s still unclear how these new AI systems will impact healthcare, but everyone involved should be careful to avoid relying too heavily on them. At the end of the day, just like the humans who program them, AI models have their flaws. 

Do You Hurry to Outrun the Pain?

By Carol Levy

I'm infused with impatience. I do everything fast.

I used to swim at the YMCA. I didn’t feel like I was moving quickly, but to others I was a speeding bullet knifing through the water. As soon as I stopped, to make my turn at the end of the lane, invariably someone watching would yell down at me, “What's your rush? Isn't it more fun if you enjoy it?”

Not for me. It's not just the physicality of moving swiftly through the water, which for me is a wonderful feeling. More important is getting to the end of the mile of swimming I try to complete, before something happens to trigger my pain.

I can't tolerate touch to the left side of my face, due to trigeminal neuralgia and phantom pain. Just the idea of a droplet of water touching my face terrorizes me, so I only do the backstroke.

One day a man asked me, “Is that the only stroke you know? I could teach you others.”

I didn't want to explain why I only did the backstroke, so I shrugged my shoulders and swam away. 

The backstroke works for me because my arms move in such a way that they don't fire off bullets of water that might hit my face. Regardless, I am always at the mercy of the thought, “Be careful! Finish this before you get hit in the face with a droplet.”

I'm impatient because I have to outrun the pain. I get to the Y early, impatient to get into the pool before others, so no one gets in the lanes next to me and splashes water on my face.

This is true of almost every aspect of my life. I shop fast because using my eyes too much triggers the pain. The faster I go through a store, the less opportunity I have to see things I want to see, but did not come to buy.

On rare occasions, I get sidetracked.  I forget.  I start to look at what else they have. My eyes start to travel up and down the shelves, and the pain grows to such heights that I fear my ability to get out of the store and drive home safely. So, I rush.

Before my trigeminal neuralgia, I loved to read. I could read a whole book in a few hours. And as soon as I finished, like the joke about eating Chinese food, I'd be hungry to start a new one.

Now I can read only a few pages at a time, skipping words, paragraphs, pages, looking for the dialogue that essentially explains the story. Who the main characters are and what their relationships are with each other, are lost to me.

I am impatient to get to the end. Not to see who the murderer is (I love mysteries the best), but to get to the end quickly, so the pain doesn't interfere.

I could go on and on with other examples, but they don't matter. At the end of the day, they all boil down to one thing: Hurry up! Hurry up! The pain is coming! The pain has started!

But I have to get to the end. The end of the swimming lane, the grocery list, and the end of the book.

There are changes we all go through, no matter our circumstances. But I think pain sufferers change more than most people -- and the changes are largely the result of trying to outrun the pain. It’s an impatience that’s very hard for those without pain to understand.

As for me? I used to be the tortoise. Now I'm the hare. Right now, I'm hurrying to finish writing this column before the pain takes over from using my eyes so much.

Pain makes me rabbit my way through life. The tortoise, ambling by, gets to look at the scenery. The hare in us makes it hard to stop and smell the roses.

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. 

A Medical Enigma I’ll Never Understand

By Pat Akerberg

I recently read Carol Levy’s column describing a medical enigma about a new pain-relieving medication. Carol and I both suffer with the same debilitating condition -- trigeminal neuralgia (TN) – so I was intrigued to learn more about it. Important to note that she has suffered with TN twice as long as I have. Bless you, Carol.

The new medication by Vertex Pharmaceuticals is suzetrigine, which the FDA is fast-tracking with a priority review.  For all the hype, it turns out that suzetrigine is only being studied as a treatment for acute pain and diabetic peripheral neuropathy.  Along with Carol, I had hoped this medication would be something for all of us in pain. Most especially since there hasn’t been any new pain medication for two decades. 

Here’s the medical enigma about the condition we suffer with that I’ll never understand.  Simply put, why can surgeons perform a microvascular decompression (MVD) brain surgery on TN patients when they cannot offer treatment for a bad outcome that might occur (and does 20% of the time)? 

And what happens if the neurosurgeon lies to you before the surgery and falsely claims that he/she can reverse any unwanted outcome? 

As background, I was struck with the lightning bolts of TN in 2009.  Because I wanted to return to work pronto, I chose to have MVD surgery in 2010 that was recommended to halt the horrific pain.  Instead, I wound up being harmed even further by the surgery.

Fast forward to the present, and I’ve been seen by 11 neurologists in my area who were all Ill-equipped to understand TN, let alone how to treat my worsened condition. 

So, I understand the rise of Carol’s hope and excitement about a possible new medication that might help alleviate the neuropathic pain we suffer with. The worst pain known to medical practice is TN, and the idea that using disappointing treatments like Tylenol or suzetrigine for it is truly unfathomable. 

But here’s what else I really don’t understand.  If surgery is allowed for TN, then why is the medical profession unable to deal with the unfortunate, damaging outcomes from it that happen to hundreds of patients like me? 

I’ve been told by neurosurgeons that training in medical schools for TN is woefully lacking.  Yet somehow performing surgeries for TN or other challenging conditions persists, especially for controversial surgeries that don’t have a good track record 6 months later. 

When I asked the neurosurgeon who performed my procedure what went wrong during the surgery, his response was: “No one ever told you that surgery was without risk.”

In other words, “You knew the risk and you chose to do it anyway.” 

Then he told me I should find a psychiatrist since I was so “anxious” about my unfortunate outcome. So much for his emotional intelligence and integrity (or competence for that matter).

Again, who wouldn’t be anxious if they underwent brain surgery thinking they would be rid of the wicked pain, only to wake up in worse pain through no fault of their own?  Imagine my shock afterwards when I learned he lied and couldn’t reverse anything that he claimed he could.

With zero assistance from him, I set out to contact neurological specialists internationally.  When I spoke with a TN neurosurgeon from Israel, he answered the enigma that has bothered me for years.  I’m paraphrasing what he told me, but here’s what he said:

“The United States is cut happy. The U.S. has a medical business model and, as such, they allow surgeries that the rest of the world would never perform given the susceptibility for harm in such a snug, vulnerable brain area.”

WOW.  That explained the run-around I experienced. It also explained why, despite my considerable efforts, I couldn’t get any pain relief (forget justice) for the harmful outcome I suffered with the phantom pain of anesthesia dolorosa.

Then I spoke with several TN experts around the U.S. after sending them my MRI.  Each one told me that since the detrimental outcome of my surgery sensitized my central nervous system, I would no longer be considered “operable” by most TN surgeons anywhere ever. 

Again, WOW.  I really need someone to explain to me why it’s considered okay to perform a risky surgery on someone when there’s no way to treat any disastrous outcome of said surgery.  My experience has been to blame me (the patient) with a neat, tidy self-serving explanation.

I guess it all comes down to how desperate one is to get relief from the pain caused by the “suicide disease.”  That desperation is then exploited with a buyer beware consent document.  

I’ve since learned that consent born out of desperation (or a lie) becomes absolution for the surgeons performing the MVD procedure for TN.  That frees those performing the surgery from their oath to do no harm. 

Here’s the kicker: After having done considerable research, I asked my neurosurgeon if any bad outcome could be reversed later. He answered “yes” in his fervor to ready me for the surgery. So, I signed the consent agreement based on his lie. 

Would you take on doing something that you knew could make a patient’s situation even worse, if you knew beforehand that you couldn’t do anything to correct it if something bad happened?  And who would be responsible if the outcome was bad? You or the patient?  Another enigma.

I guess the neurosurgeon from Israel was right about the American medical business model promoting “cut happy” surgeries that generate significant profits for their operating entities.

Interestingly, I also learned from my situation that conditions like TN are considered so rare that they are often relegated to teaching hospitals to give surgical residents training opportunities.

Even worse, regarding justice in the state of Florida where I live, one cannot sue a surgeon working for a teaching hospital. Why? Because the state owns the teaching hospitals and one cannot sue teaching hospitals owned by the state. Now, there’s a neat, circular wad of unjust enigmas further saddling the patient.

The medical enigmas abound with TN, and I suspect that’s also true with other painful conditions. So, it’s no wonder Carol chose to write about a much needed, yet disappointing pain medication that was fast-tracked to address a huge void in pain management. 

Another medical enigma that I’ll never understand: How is this whole medical approach to supposedly treating pain any different from a fox guarding the hen house?

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.