Migraine Sufferers Rank Triptans as Most Helpful Medication

By Pat Anson, PNN Editor

A large new study that compared the effectiveness of acute migraine medications found that triptans are two to five times more helpful than ibuprofen and acetaminophen in treating migraine attacks. Triptans were also found to be more effective than Excedrin migraine, opioids, and other non-steroidal anti-inflammatory drugs (NSAIDs).

The study used a unique methodology, gathering data on over 3 million migraine attacks reported by over 278,000 people in the US, UK and Canada who used a smartphone app during a six-year period. The Migraine Buddy app allows users to monitor the frequency of their migraine attacks, triggers and symptoms, and rate how “helpful” or “not helpful” their medications are.

“There are many treatment options available to those with migraine. However, there is a lack of head-to-head comparisons of the effectiveness of these treatment options,” said lead author Chia-Chun Chiang, MD, a neurologist who specializes in Headache Medicine and Vascular Neurology at the Mayo Clinic. “These results confirm that triptans should be considered earlier for treating migraine, rather than reserving their use for severe attacks.”

Chiang and his colleagues looked at a total of 25 medications among seven drug classes. Different dosages and medication combinations were combined in their analysis. Newer drugs that inhibit calcitonin gene-related peptides (CGRP) were excluded because they were not in wide enough use during the study period.

How Patients Rated Effectiveness of Acute Migraine Drugs

NEUROLOGY

The study findings, published in the journal Neurology, ranked several triptans (eletriptan, zolmitriptan, sumatriptan, rizatriptan, naratriptan, almotriptan and frovatriptan) as the most helpful medications, with about 75% effectiveness.

By comparison, acetaminophen (paracetamol) was helpful only 37% of the time.

“Our results strongly support the use of triptans, the first class of migraine-specific medication for the acute treatment of migraine,” researchers reported. “In practice, NSAIDs and acetaminophen are generally the first-line medications utilized for mild to moderate headache, and migraine-specific medications are often reserved for moderate to severe migraine attacks, which could potentially result in under-utilization of triptans or delayed treatment during migraine attacks.”

Participants found NSAID’s more effective than acetaminophen, with ketorolac helpful 62% of the time, indomethacin helpful 57% of the time, diclofenac helpful 56% of the time and ibuprofen helpful 42% of the time.

Excedrin migraine was effective only about half the time, about the same as tramadol and codeine. Opioids are usually not recommended for migraine because they’ve been associated with medication overuse headache.

“For people whose acute migraine medication is not working for them, our hope is that this study shows that there are many alternatives that work for migraine, and we encourage people to talk with their doctors about how to treat this painful and debilitating condition,” said Chiang.

Migraine affects about 39 million people in the United States and is the second leading cause of disability worldwide, according to the American Migraine Foundation.  

Another recent study that compared migraine prevention drugs found that two medications usually used to treat depression and high cholesterol are just as effective as the new CGRP inhibitors. Amitriptyline is a tricyclic antidepressant, while simvastatin is a statin. Both drugs are used off-label for migraine prevention and cost substantially less than CGRP drugs.

Autoimmune Disease Patients Struggle with Diagnosis and Costs

By Andy Miller, KFF Health News

After years of debilitating bouts of fatigue, Beth VanOrden finally thought she had an answer to her problems in 2016 when she was diagnosed with Hashimoto’s disease, an autoimmune disorder.

For her and millions of other Americans, that’s the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, doesn’t produce enough of the hormones needed for the body to regulate metabolism.

There’s no cure for Hashimoto’s or hypothyroidism. But VanOrden, who lives in Athens, Texas, started taking levothyroxine, a much-prescribed synthetic thyroid hormone used to treat common symptoms, like fatigue, weight gain, hair loss, and sensitivity to cold.

Most patients do well on levothyroxine and their symptoms resolve. Yet for others, like VanOrden, the drug is not as effective.

For her, that meant floating from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year.

“I look and act like a pretty energetic person,” said VanOrden, 38, explaining that her symptoms are not visible. “But there is a hole in my gas tank,” she said. And “stress makes the hole bigger.”

Autoimmune diseases occur when the immune system mistakenly attacks and damages healthy cells and tissues. Other common examples include rheumatoid arthritis, lupus, celiac disease, and inflammatory bowel disease. There are more than 80 such diseases, affecting up to an estimated 50 million Americans, disproportionately women. Overall, the cost of treating autoimmune diseases is estimated at more than $100 billion annually in the U.S.

‘Patients Feel Dismissed’

Despite their frequency, finding help for many autoimmune diseases can prove frustrating and expensive. Getting diagnosed can be a major hurdle because the range of symptoms looks a lot like those of other medical conditions, and there are often no definitive identifying tests, said Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta. In addition, some patients feel they have to fight to be believed, even by a clinician. And after a diagnosis, many autoimmune patients rack up big bills as they explore treatment options.

“They’re often upset. Patients feel dismissed,” Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, said of some patients who come to her for help.

Insufficient medical education and lack of investment in new research are two factors that hinder overall understanding of hypothyroidism, according to Antonio Bianco, a University of Chicago endocrinologist and leading expert on the condition.

Some patients become angry when their symptoms don’t respond to standard treatments, either levothyroxine or that drug in combination with another hormone, said Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We will have to remain open to the possibility that we’re missing something here,” he said.

Jennifer Ryan, 42, said she has spent “thousands of dollars out-of-pocket” looking for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident — diagnosed with Hashimoto’s after years of fatigue and weight gain — because her levels appeared normal. She recently switched doctors and hopes for the best.

“You don’t walk around hurting all day long and have nothing wrong,” Ryan said.

And health insurers typically deny coverage of novel hypothyroidism treatments, said Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which sees patients from all 50 states. “Insurance companies want you to use the generics even though many patients don’t do well with these treatments,” she said.

Meanwhile, the extent of Americans’ thyroid problems can be seen in drug sales. Levothyroxine is among the five most prescribed medications in the U.S. every year. Yet research points to some overprescribing of the drug for those with mild hypothyroidism.

A recent study, paid for by AbbVie — maker of Synthroid, a brand-name version of levothyroxine — said a medical and pharmacy claims database showed that the prevalence of hypothyroidism, including milder forms, rose from 9.5% of Americans in 2012 to 11.7% in 2019.

The number of people diagnosed will rise as the population ages, said McAninch. Endocrine disruptors — natural or synthetic chemicals that can affect hormones — could account for some of that increase, she said.

In their search for answers, patients sometimes connect on social media, where they ask questions and describe their thyroid hormone levels, drug regimens, and symptoms. Some online platforms offer information that’s dubious at best, but overall, social media outlets have increased patients’ understanding of hard-to-resolve symptoms, Bianco said.

They also offer one another encouragement.

VanOrden, who has been active on Reddit, has this advice for other patients: “Don’t give up. Continue to advocate for yourself. Somewhere out there is a doctor who will listen to you.” She has started an alternative treatment — desiccated thyroid medication, an option not approved by the FDA — plus a low dose of the addiction drug naltrexone, though the data is limited. She’s feeling better now.

Research of autoimmune thyroid disease gets little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment hasn’t fully recognized hard-to-treat hypothyroid patients, but increased acknowledgment of them and their symptoms would help fund research, Bianco said.

“I would like a very clear, solid acknowledgment that these patients exist,” he said. “These people are real.”

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

How to Recognize and Treat Intractable Pain

By Dr. Forest Tennant, PNN Columnist

The realization that a subgroup of chronic pain patients has intractable pain is finally spreading. Over half a dozen states now have laws protecting intractable pain (IP) patients and Wikipedia refers to IP as a disease that causes “a severe, constant, relentless, and debilitating pain.”

A major impediment to treatment of IP is simply that it is not commonly recognized by either patient or practitioner. Basically, the concept that pain alone can cause serious medical complications is not yet appreciated. This fact is evidenced in product advertising and lay person media articles about “chronic pain.” A close analysis implies that everyone has simple chronic pain and needs a “one size fits all” treatment.

The fact is that the IP subgroup of patients isn’t recognized by even the most sophisticated and prestigious medical institutions. For example, I hear almost daily about a person with IP who has severe hypertension, tachycardia, or even angina without any recognition that IP is the culprit.

Other examples are persons with IP who have hormonal deficiencies. Medical practitioners are treating their patients for such hormonal complications as osteoporosis, impotence, and depression, with no recognition that IP is the cause. Regrettably, some persons have had their pituitary or adrenal removed for a “tumor” when in reality the gland was over functioning and enlarged due to IP.

About half of the persons who develop IP have a genetic or inherited disorder. The most common high risk genetic conditions are Ehlers-Danlos Syndrome (EDS), ankylosing spondylitis, and scoliosis.  Other genetic, but less common, risk disorders include Marfan Syndrome, porphyria, and autoimmune diseases such as rheumatoid arthritis and ulcerative colitis. 

How IP Starts 

Thanks to research and studies in recent years, there is now an understanding of the pathologic sequences that lead to IP.  Basically, IP is the end product of multiple events and conditions that may affect a person.   

IP always has a starting or painful initiating event which is either traumatic or inflammatory. Typically, the initiating event takes place several months or years before IP symptoms develop. 

The most common traumatic events are falls, altercations or surgery. Trauma may be to the head, spinal cord, or a nerve in the arm or leg.  The most common initiating inflammatory disorders are fibromyalgia, severe respiratory infection or arthritis. 

The initiating event doesn’t usually cease but “smolders on” with pain that comes and goes.  A diagnosis of chronic pain is likely assigned, and a wide variety of medications and other measures are attempted.   

Interestingly, an initiating inflammatory event such as arthritis or fibromyalgia may seemingly spread. The person may develop additional inflammatory disorders such as thyroiditis, carpal tunnel syndrome, migraine, and irritable bowel. 

Trauma may be severe or minor and the sequelae quite variable. Neuropathies or intervertebral disc degeneration and herniation are the most common traumatic complications that lead to IP.  Pain after the initiating event is usually not constant, but at some point becomes constant. 

This constancy is associated with inflammation that develops in the brain and/or spinal cord of the central nervous system (CNS). Cells called glia or microglia promote CNS inflammation, which can damage the neurotransmitter-receptor systems that control pain.   

Exactly how injuries and inflammatory disorder activate glial cells to produce CNS is unclear. The two most discussed mechanisms are excess electromagnetic energy generated in the injury and inflammatory sites, and autoimmunity or viral invasion of CNS tissue.  The Epstein Barr virus is the most likely virus.

The first chapters of my new book, “Handbook for Intractable Pain,” are dedicated to how to recognize IP symptoms. The second section is a step-by-step treatment program of self-help.

IP doesn’t have to thrust a person into misery and a short life if a three-component protocol is followed:

1. Suppression of inflammation and autoimmunity

2. Restoration of damaged tissues

3. Pain control

To carry out this protocol, one has to become knowledgeable about IP and build, over time, an effective therapeutic program.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain. To Tennant Foundation has launched a new website, IntractablePain.org, where you can learn more about the conditions that cause intractable pain and their many complications.

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

Neuroplasticity: How the Brain ‘Rewires’ Itself

By Hilary Diefenbach, University of Colorado School of Medicine

High-profile sports like football and soccer have brought greater attention in recent years to concussions – the mildest form of traumatic brain injury.

Yet people often do not realize how common concussions are in everyday life, and seldom does the public hear about what happens in the aftermath of concussions – how long the road to recovery can be and what supports healing. Concussions are important to understand, not only for recovery, but also for the insights that the science of recovery can bring to brain health.

I am a speech language pathologist and an instructor in physical medicine and rehabilitation. I specialize in brain injury rehabilitation, with experience ranging from coma recovery to concussion care.

Treating problems tied to head injuries is complex. This is, in part, because it is not possible to directly examine the brain of a living person and because every brain injury is unique. Many aspects of health, both pre- and post-injury, affect recovery. In treating brain injuries, I work to translate this specialized science for each patient and their unique situation.

Brain Injuries Take Many Forms

While people commonly think of athletes when it comes to concussions, sports-related concussions are just one type of mild brain injury seen in health care practice. Concussions can also result from abusive head trauma, blast exposure, car accidents and falls.

The severity of a brain injury is diagnosed based on symptoms, brain imaging and a neurologic exam. Concussions are characterized by a lack of clear tissue damage seen on brain images like an MRI and by the length of time that a person loses consciousness – defined as between zero to 30 minutes.

In addition, a significant portion of concussions may not be identified or formally diagnosed at all. Even if you do not lose consciousness at the time of an injury, you could still have a concussion. Confusion, sensitivity to noise and lights and even changes to sleep and mood are common symptoms. But often, these signs may be misunderstood as signs of stress or shock during traumatic events, such as a car accident. Some people mistakenly assume that if they don’t lose consciousness, they haven’t experienced a concussion.

People who don’t feel that they have returned to normal after a concussion may need further treatment. Many report chronic symptoms that linger beyond the typical three-month recovery – a condition known as post-concussive syndrome. Around 10% of those who suffer a concussion experience post-concussive syndrome, although differences in how this problem is defined and recorded leads to highly variable estimates across studies.

So how does having a concussion affect the brain over time?

The links between concussion and dementias such as chronic traumatic encephalopathy, or, more generally, the relationship between a brain injury early in life and later brain diseases, are not yet clear. This uncertainty should not stop people from finding a path forward and taking strides to support their own brain health.

Brain ‘Detours’

After recovering from a brain injury, patients want to understand how to minimize further risk to their brain, which is all the more important since prior injury puts the brain at greater risk for further injuries.

Researchers and medical providers have learned that after injury the brain can change and “rewire” itself at a cellular level over the life span – a process called neuroplasticity. Brain cells, called neurons, join to form electrical pathways that power activity within the brain.

In addition to other repair processes, neuroplasticity supports damaged brain areas to reconnect injured routes or find “detours” to restore brain function. This means that in recovery, the brain can literally find a new way – or make one – to regain critical abilities.

Neuroplasticity also offers insight into why each brain injury is unique. Following a concussion, therapists focus on detailed evaluations and patient interviews to identify affected areas and to design an intervention.

While the general map of brain regions and their associated functions is standard, individual variability is common. Brain injuries from the same cause of injury, via similar force and intensity of impact and affecting the same location of the brain, can lead to very different symptoms in different people.

While the brain is fully developed by the time people reach their early 20s, neuroplasticity continues well beyond this point. Researchers have seen neuroplastic change during the life span in both the white and gray matter that form brain tissue. The remapping of brain pathways that occurs in late-life injuries, such as a stroke, is one strong piece of evidence to suggest there may be no specific “end date” to the brain’s capacity to restore its internal connections.

Importantly, fuller density of brain cells is thought to create a buffer that is protective against damage due to injury and aging. This extra “bandwidth” is referred to as cognitive reserve. Broadly speaking, higher levels of baseline cognitive reserve have been linked to genetics, educational attainment and health factors.

Neuroplasticity is one process that research shows is critical to maintaining these reserves throughout life.

Building Brain Health

Cognitive reserve is crucial to brain health both before and after a concussion. Studies show that higher levels of cognitive reserve may lessen your risk for prolonged problems after a concussion.

In addition, injuries that occur during childhood and late life may present different challenges in recovery linked to the brain’s cognitive reserves and overall health. For this reason, screening tools for concussion often probe a person’s medical history prior to the event.

Keeping up cognitive reserves likely maintains healthy brain connections that can help us age better. Bilingualism, maintaining an active social life and even going to museums are linked with lower rates of dementia. These studies support that brain activity is good for brain health and it is triggered by many things, including thinking, learning and engaging with the world around us.

Just as there is no one-size-fits-all brain injury, there is also no single path toward brain health.

Advanced brain imaging to detect concussions is not available in standard clinical settings, so clinicians rarely have clear road maps for rehabilitation. But getting optimal sleep, avoiding excessive drinking or other toxic substances and leading a physically and mentally active life are core tenets of brain health.

Finally, the brain does not exist in isolation. Its health is connected to other parts of the body in many ways. Therefore, doctors recommend treating medical conditions that directly affect our brain health and that reduce brain aging, such as high blood pressure,sleep apnea,migraines and even hearing loss.

Brain health is unique to each person, and brain injury treatment depends on your individual lifestyle and health risks. Strategies to treat specific symptoms vary and should be designed with the help of medical specialists. But brain health and cognitive reserve provide a common direction for everyone. Living an active lifestyle – physically, mentally and socially – can drive neuroplasticity and maintain the brain.

Studies of healthy people offer insights into how individual brains are shaped through everyday activities. For instance, research finds that expert musicians have denser sound-processing regions in their brains. The brains of cab drivers have greater development of spatial memory areas. Even military fighter pilots have been shown to have denser tissue in regions connected to strategic thinking.

These startling discoveries teach us that what we do every day truly matters to brain health. For all of these reasons, brain researchers commonly use the phrase “neurons that fire together, wire together” to describe how the brain’s connections change shape associated with repeated patterns of the electrical firing of brain activity.

While many questions remain to be answered, it is well established that the brain can be shaped throughout life. With this knowledge in mind, we can tend to it with greater care.

Hilary Diefenbach, MA, is a licensed Speech Language Pathologist at the Marcus Institute for Brain Health and an Instructor at the University of Colorado School of Medicine. Hilary specializes in brain injury rehabilitation for adults.

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

Patients Urge DEA to Stop Cutting Supply of Opioid Pain Medication

By Pat Anson, PNN Editor

Thousands of people in pain are urging the Drug Enforcement Administration to scrap plans to further reduce the supply of opioid medication in 2024.

The DEA recently announced it would cut production quotas for oxycodone, hydrocodone, codeine and other opioids for the 8th straight year, despite complaints from pain patients and healthcare providers that the medications are already in short supply and difficult to get at pharmacies.

The DEA invited people to comment on its plans in the Federal Register. Over 2,400 have so far – many with heart breaking stories to share about not being able to get the pain medication they need.

“I was finally able to establish a reasonable pain management routine but that was disrupted when my regular pharmacy was no longer able to supply my medication (a moderate dose of Norco) and not a single other pharmacy was willing/able to fill my prescription,” said Jessica Ericksen. “One pharmacy supervisor screamed at my doctor on the phone when he called in to try to get my prescription set up with them. I now have a 1.5 hour round trip drive to get my medication, which is particularly challenging for a disabled person who is unable to drive.”

“I am one of the many that has had my life destroyed by the government regulations on pain meds. I haven't been able to get my medications for the better part of a year,” said Paula Perry. “I'm now basically bedridden and praying for death. Stop doing this to people, we are dying and you guys make it worse every year.”

“Most of us in pain have gone through all of the other drugs to treat our pain and these are the drugs of last resort. The opioids don't totally treat our pain but allow us to function,” said Heather Larson. “The DEA needs to stop playing doctor and let the doctor decide what is right to prescribe. If production is cut anymore, people will commit suicide or go to the street for pain medication.” 

“I have already had to jump through numerous hoops just to be prescribed my meds, but now have to call pharmacy after pharmacy monthly to find my meds, because they are out of stock at every pharmacy around me in a 10-mile radius,” said Jill Bartruff, who suffers from scoliosis. “I also had a surgery in September 2023 and could not find a pharmacy to fill my post op pain meds. I was in immense pain and was unable to advocate for myself to get my meds filled. Imagine being cut open and discharged from the hospital with no pain control.”

“Why do you continue to cut supply when legitimate patients cannot obtain their medications? Many are already out of their meds for weeks on end,” an anonymous poster wrote. “You should be able to see you're making the situation worse.” 

‘More People Will Die’

Why is the DEA planning to reduce the opioid supply for yet another year? The agency wants to reduce the risk of opioid addiction and overdose, and is relying on advice from the Food and Drug Administration, which estimates that medical demand for Schedule II opioids will decline 7.9% from 2023 levels.

But opioid production quotas have been falling for nearly a decade and overdoses have still risen to record levels – fueled primarily by illicit fentanyl, stimulants and other street drugs. 

“The proposed quota will, without any doubt, not only cause harm but actually kill people. Research has shown time and time again that restricting access to safe, regulated supplies of opioids does not result in decreased use, but rather increased reliance on an unstable, unregulated street supply,” Alexandra Bradley wrote in her comment. “The DEA is making a massively dangerous move by even suggesting this quota, and it will result in the deaths of many, many people.” 

“Further reduction of chronic pain relief meds such as oxycodone will literally add to the body count (mostly suicide and withdrawal from abruptly stopping meds) already racked up due to the ongoing shortages,” said Ronald Crook Jr. “What an embarrassment and shame that chronic pain patients such as myself who are just trying to maintain some sense of dignity face being told by our pharmacist that the wealthiest, most powerful nation on earth cannot help us because of quotas.”

“All of us patients, we are the compliant ones with our medications. We go through extensive pill counts and urine drug screens to make sure we are not abusing the substance. The overdoses that are occurring are due to heroin and fentanyl, not prescribed pain medication,” said Candace McFarland. “If you choose to cut people’s medications, more people will turn to the street and more people will overdose accidentally on fentanyl.”

“Individuals that are prescribed pain medication already have a hard enough time getting their medications. I can sympathize. I have ADHD and I've been on Adderall for the better part of a decade. And this year every refill day was anxiety inducing because of the shortage,” said Amber Kunkel. “There needs to be an increase in producing both pain medications and ADHD meds. Without access to safe and predictable drugs, there will be a continued increase in people turning to the streets for medication and dying.” 

The DEA and FDA have responded to complaints of Adderall shortages and other stimulants used to treat attention-deficit/hyperactivity disorder. The DEA plans to modestly raise production quotas for stimulants, after the FDA predicted a 3.1% increase in their medical use in 2024.  

But both federal agencies appear to have turned a blind eye to opioid shortages. The American Society of Health-System Pharmacists (ASHP) has been warning of shortages of oxycodone and hydrocodone for months, but those shortages have not been publicly acknowledged by either the DEA or FDA.

Other factors that could be contributing to opioid shortages are strict limits on the amount that can be supplied to pharmacies – regardless of patient need -- under the national opioid settlement. A suspicious order or “red flag” activity could result in a pharmacy being terminated from receiving anymore controlled substances -- putting added pressure on pharmacists to carefully screen patients and their prescriptions.

Another factor is the low cost of generic opioids. Prices for some generic medicines are so low that some manufacturers can’t make a profit and have stopped making the drugs. Other manufacturers can’t raise production of opioids without permission from the DEA.

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.

‘Great Potential’ in Stem Cell Therapies for Knee Osteoarthritis

By Pat Anson, PNN Editor

Osteoarthritis of the knee is one of the most common forms of arthritis, causing progressive damage and thinning of cartilage in the knee joint.  Over 32 million American adults have knee osteoarthritis (OA), but most are treated with injections or pain medications that provide only temporary relief and often have side effects.

Could stems cells provide a more effective and long-lasting treatment for knee OA? Clinical trials have had mixed results so far, so a group of researchers in China conducted a meta-analysis of nearly 1,200 studies, weeding out the ones that were poorly designed or biased.

They eventually settled on 16 studies involving 875 patients with knee OA, most of them high quality studies that were randomized with control groups to compare results with.

Their findings, published in the Journal of Orthopaedic Research, show that stem cell treatment was associated with significant reductions in patient-reported pain from the third month onwards.

The most pain relief came from mesenchymal stem cells (MSCs) derived from a patient’s own body fat (adipose tissue) and stem cells derived from umbilical cord blood. Injections of MSCs derived from a patient’s fat provided better pain relief than stem cells from other donors and led to the most recovery of knee joint function.

“Stem cell transplantation proved safe and effective for knee osteoarthritis treatment,” the authors wrote. “Different sources of stem cells have a good effect on alleviating knee joint pain, restoring knee joint function, and minimizing patient trauma.”

The researchers said there was “great potential” for MSC therapy in the treatment of knee OA, but larger studies were needed to confirm their findings.

“The safety and efficacy of MSC therapy require rigorous validation with a larger sample size before clinical application. From the perspectives of relieving knee joint pain, promoting knee joint function recovery, and reducing patient trauma, umbilical cord‐derived stem cells should be considered as a priority option, followed by ADSCs (adipose stem cells), and finally bone marrow‐derived stem cells.”

In 2019, a small Canadian study found that stem cells collected from a patient’s bone marrow significantly reduced knee pain from osteoarthritis for as long as a year. But that study only involved 12 patients.

FDA Foot Dragging

Why are there so few good quality studies? Stem cell promoters have long complained about foot dragging by the Food and Drug Administration, which has been reluctant to approve new stem cell therapies that are not tested in randomized, double-blind, placebo-controlled studies — the so-called “gold standard” in clinical trials.

The FDA sent warning letters to 20 stem cell manufacturers and clinics in 2019, saying they were in violation of FDA guidance requiring stem cells to undergo “minimal manipulation.” The agency said the science behind stem cells made from a patient’s own tissue had not been proven safe and effective.

“There’s a false premise being asserted by some in the field that a product derived from a person’s own body and then manipulated and reinserted for another use different from the one it played in its original location is not subject to FDA regulation,” then FDA commissioner Scott Gottlieb, MD, and FDA Biologics Center Director Peter Marks, MD, said in a joint statement.

Critics say the FDA is still slowing down stem cell research, despite a pledge to approve 10 to 20 cell or gene therapies annually by 2025. So far this year, the agency has only approved five.  

“Despite signs of progress and a strong commitment from FDA leadership to improve its readiness for these cutting-edge therapies, the agency remains far off pace. Its risk-averse approach and culture that’s slow to adapt to new science could become a curse for many patients and the scientific field as a whole, with investment in biotech chilling in recent quarters,” Richard Burr, a policy adviser for health and life sciences consultant DLA Piper, wrote in an op/ed published in STAT News.

Burr is a former U.S. senator and congressman from North Carolina.

“During my time in Congress, I was one of the FDA’s toughest critics, but I also fiercely defended its mission because I believe in it. The FDA now has an opportunity to transform its oversight of cell and gene therapies and deliver on promises made to patients,” Burr said.

People in Pain Feel More Stigmatized and Lonely

By Pat Anson, PNN Editor

A new global study of people living with pain found that nearly half feel stigmatized and regularly feel lonely. Women, people of color, and the LGBQ+ community are significantly more likely to feel they are treated differently, not believed, or discriminated against because of their pain.

The consumer health company Haleon conducted an online survey of over 18,000 people in 18 countries, including the United States, Canada, Australia and the UK. It’s the fifth time since 2014 the company has conducted such a survey, which forms the basis for the Haleon Pain Index (HPI), which is “designed to give a voice to those experiencing pain.”

The findings from this year’s survey show that attitudes about pain in a post-pandemic world have grown more judgmental and less tolerant, regardless of where people live. Worldwide, 42% of people in pain said they regularly experience loneliness; with serious loneliness felt by 38% of people in mainland China, 33% in Australia and 32% in the UK.

“Everyday pain is a health issue that can easily be dismissed or trivialized. Many don’t realize its effects can be much worse than the symptoms themselves,” said Linda Papadopoulos, PhD, a psychologist and consultant. “The result of loneliness and mental health impact caused by lack of empathy and being treated differently is only worsening. As a society, we need to improve empathy and understanding in a world that is continuing to harden to these issues.”.

The HPI found that people who already experience bias and discrimination are the most affected by hardening views on pain. 

• 58% of women in pain said they were treated differently, not believed or discriminated against, versus 49% of men. Stigmatization was highest among women in India (74%), Saudi Arabia (74%), Brazil (74%), and mainland China (61%). 

• 59% of people of color said they felt stigmatized because of their pain, versus 48% of white people. This trend is highest in Brazil (71%), Poland (64%), USA (64%), and the UK (60%) 

• 44% of people who identify as LGBQ+ fear that others will make assumptions about them and their pain, compared to 32% of heterosexuals. This trend is highest in India (61%), USA (54%), Canada (49%) and Australia (48%). 

The study also found a striking generational gap in the way people in pain are treated, with younger patients often struggling to make their pain known.

Worldwide, 70% of people in their late teens or 20’s (Gen Z) felt stigmatized because of their pain, compared to just 40% of Baby Boomers aged 60 or older. Levels of stigmatization against Gen Z were highest in India (80%), USA (79%) and UK (74%).

Even just talking about pain can be problematic for younger people. 45% of Gen Z respondents said pain was too much of a taboo for them to speak out, compared to 35% of Baby Boomers.   

“While pain is a universal human experience, resulting in loneliness and stigma for many, its impact varies considerably between social groups, with the most marginalized amongst the worst affected. Our ambition is to break down the barriers to achieving better everyday health for everyone – irrespective of age, race, ethnicity, gender, sexual orientation, disability and other factors,” said Lisa Jennings, Head of Haleon’s global over-the-counter products. 

Despite differences in experience, there is broad agreement among people on the need for a more personalized and compassionate view of pain. Over two-thirds of respondents (68%) said more empathy was needed to address bias and prejudice.

Notably, 69% wished that doctors and 62% wished that pharmacists were better trained on how individual pain is for different patients.

How are you treated by your pharmacist? If you are a pain patient in the United States, please take a few minutes to participate in PNN’s survey on drug shortages and opioid prescribing by clicking here.

Drug Shortages Mostly Involve Low-Cost Generics

By Pat Anson, PNN Editor

Drug shortages in the United States are primarily being driven by low profit margins – not supply chain problems – according to a new analysis that found 84% of medicines currently in shortage are low-cost generics. Prices for some generic medicines are so low that manufacturers have stopped making the drugs.

The study by the IQVIA Institute, a healthcare data tracking firm, identified 132 medications in shortage as of June 2023, with pain/anesthesia drugs as the therapy area with the greatest number (21) of shortages. The shortages are so acute that elective procedures requiring anesthesia are being cancelled or postponed.

“Anesthesia medicines, including general, local, and muscle relaxants, are foundational to inpatient and outpatient surgical procedures, and shortages in these medicines can result in delays for patients receiving procedures and hospitals making prioritization decisions based on available supply,” the IQVIA said.

“Shortages across these medicines complicate scheduling of a wide range of procedures and surgeries, which may be part of a broad-based reduction observed in elective procedures in post-pandemic periods.”

One weakness of the IQVIA report is that it relies solely on drug shortage data from the Food and Drug Administration.  The American Society of Health-System Pharmacists (ASHP) currently lists 242 medicines in short supply, nearly twice the number listed by the FDA.

Three generic opioid medications commonly taken for pain, immediate-release oxycodone, oxycodone-acetaminophen, and hydrocodone-acetaminophen tablets have been on the ASHP shortage list for months, but have yet to appear on the FDA’s shortage list.  

Pain patients are feeling the impact of short supplies. In recent months, many have complained about problems or delays getting their opioid prescriptions filled at U.S. pharmacies.

“It has been a month since I had my last refill and no pharmacy can give me an answer as to when they may be back in stock. In the meantime, I just live in misery,” one patient told us.

“Mobile, Alabama seems to be almost completely out of pain medication, specifically the most widely used mg of oxycodone-acetaminophen and hydrocodone. I was supposed to get my refill from Walgreens… and they are not only out but cannot order more,” another patient said. “This is such a serious issue with a lot of people probably going through withdrawals in our county and nobody seems to care.”

‘Prices May Be Too Low’

Teva Pharmaceuticals, a large generic drug maker, has informed the FDA that it is discontinuing production of immediate-release oxycodone tablets. The move appears to be in line with Teva's announcement that it would reduce its production of generics from 80% of its drug portfolio to 60% over the next few years.  

“The drugs we’re pulling out of are drugs which are low-margin,” Teva CEO Richard Francis recently told Bloomberg.

The IQVIA found that over half (56%) the medicines in short supply are low-cost generics priced at less than $1 per unit. In many cases, that’s below the manufacturer’s cost of production and distribution. Because the generic drug industry is highly concentrated with few suppliers, any disruption or discontinuation of a generic can have an outsized impact.

“Generic medicines are much lower cost than brands and some observers have begun to suggest that some generic prices may be too low to support sustainable markets,” IQVIA found. “Prices driven below the cost of manufacturing and distributing can result in some competitors discontinuing production of molecules (medicines), reducing necessary maintenance activities and generally contributing to less resilience in manufacturing supply of those medicines.”

Other highlights of the IQVIA report:

• 120 of the 132 drug shortages listed by FDA involve generics. Only 12 drugs are brand name

• 75% of current drug shortages have been active for over a year and 58% have lasted at least two years

• Three times as many new drug shortages have been reported than have been resolved in recent years

• 67% of shortages involve injectable drugs

• Shortages of antibacterial medication “are a significant concern affecting multiple aspects of healthcare delivery”

• Shortages of cancer treatment drugs have forced some oncology providers to suspend or delay treatments

Federal agencies appear to have inadvertently contributed to some of the shortages. The IQVIA said FDA inspections of drug manufacturing plants have triggered shutdowns of some sites due to safety or sanitation issues. Those shortages “are difficult for their peers to resolve,” according to IQVIA, because few other companies can pick up the slack.

A generic manufacturer of oxycodone, hydrocodone and ADHD medication recently sued the DEA after the agency suspended its drug production license over record-keeping issues. The lawsuit by Ascent Pharmaceuticals accused the DEA of incompetence and heavy-handed regulation of the nation’s drug supply.

In the past year, under the DEA’s ironically named “Operation Bottleneck” initiative, the agency has taken administrative actions against 143 DEA-registered doctors, pharmacies, drug makers and drug distributors, largely over allegations of poor record-keeping and inadequate controls to prevent the diversion and theft of opioids and other controlled substances.

“These companies have a legal obligation to account for every dose and every pill to protect the safety and health of the American people,” said DEA Administrator Anne Milgram. “DEA will continue using every available tool to prevent the diversion and misuse of opioids and other highly addictive controlled substances.”

DEA recently announced plans to further reduce the supply of opioid pain medication in 2024 -- which would be the eighth consecutive year the agency has reduced opioid production quotas for drug manufacturers. DEA said it was acting on the advice of the FDA, which estimates that medical need for Schedule II opioids will decline on average 7.9 percent from 2023 levels.

Cheap Drugs May Prevent Migraine Just as Effectively as Expensive Ones

By Pat Anson, PNN Editor

Two drugs commonly used to treat depression and high cholesterol are just as effective at preventing migraine as CGRP inhibitors, according to a large new study.

They are also a heck of a lot cheaper.  

Researchers at the Norwegian Center for Headache Research analyzed the prescription drug history of over 100,000 migraine patients in Norway from 2010 to 2020. Their goal was to see if patients reduced their use of medications used to treat acute migraine pain – such as triptan – once they started taking drugs used to prevent migraine.

“When the withdrawal of acute migraine medicines changed little after starting preventive medicines, or people stopped quickly on the preventive medicines, the preventive medicine was interpreted as having little effect,” explained lead investigator Marte-Helen Bjørk, MD, a Professor in the Department of Clinical Medicine, University of Bergen.

“If the preventive medicine was used on long, uninterrupted periods, and we saw a decrease in the consumption of acute medicines, we interpreted the preventive medicine as having good effect.”

Beta blockers are often the first drugs used to prevent migraine attacks, but Bjørk and her colleagues found that three other medications were associated with lesser use of triptans: amitriptyline, simvastatin and CGRP inhibitors.

Amitriptyline is a tricyclic antidepressant that is mostly taken for depression, while simvastatin is a statin used to treat high cholesterol. Both drugs are also used off-label for migraine prevention.

CGRP inhibitors are a relatively new class of medication that block calcitonin gene-related peptides, a protein that binds to nerve receptors in the brain and triggers migraine pain. Since 2018, the FDA has approved over half a dozen CGRP medications, which are considered the biggest innovation in migraine treatment in decades.

However, CGRP drugs are not cheap. Eight doses of Nurtec, a tablet taken daily to prevent and treat migraine, can cost over $1,000, while the listed price for Emgality is $679 for a self-injectable syringe used once a month for migraine prevention. Prices will vary for patients, depending on insurance and whether they qualify for a patient assistance program.

By comparison, amitriptyline and simvastatin are screaming bargains. A bottle of 30 simvastatin tablets will cost about $14, while amitriptyline costs about $13 for a supply of 28 tablets.

When it comes to reducing triptan use, amitriptyline, simvastatin and the CGRP inhibitors performed about the same. During the first 90 days of treatment, nearly 57% of patients taking simvastatin reduced their triptan use, compared to 53% of patients taking amitriptyline and 55% of those taking CGRP medicines.

The study findings, recently published in the European Journal of Neurology, show that patients taking beta blockers, topiramate or clonidine were more likely to keep taking triptans.

“Our analysis shows that some established and cheaper medicines can have a similar treatment effect as the more expensive ones. This may be of great significance both for the patient group and Norwegian health care” says Bjørk, who has already started work on a clinical trial to see if other cholesterol-lowering drugs can prevent migraine.

Migraine affects about 1 billion people worldwide and 39 million in the United States, according to the American Migraine Foundation. In addition to headache pain, migraine can cause nausea, blurriness or visual disturbances, and sensitivity to light and sound. Women are three times more likely to suffer from migraines than men.

Doctor Bison’s Fables: The Crowded Exam Room

By Pat Anson, PNN Editor

Dr. Mark Ibsen is a Montana physician whose license was suspended in 2016 by the state medical board for “overprescribing” opioids and poor record keeping. A state judge later reversed the suspension, ruling the medical board made numerous errors.

Ibsen has since become a strong proponent of medical marijuana and a leading advocate in the pain community. He’s published a new book, “Dr. Bison’s Fables,” using animals as lead characters in a series of stories to convey how many pain patients in the U.S. lack proper treatment and some are in crisis.

This interview with Ibsen has been edited for content and clarity.

PNN: Who is “Doctor Bison’s Fables” intended for and what is your goal? What is the message you're trying to get across?

Dr. Mark Ibsen

IBSEN: I'm not really in the book selling business. I'm in the restoration of the sacred physician-patient relationship business. But all of my screaming from the rooftops about it for the last 12 years has made little progress.  

I was talking to the publisher and he was saying if you write a book about what's going on in medicine today, the pain crisis and catastrophe of it, you'll have a readership of 50,000. If you write a book that talks about the dynamics of what's going on, and put it in the form of a parable or a fable that has a bigger meaning to it, your audience will expand.

When this approach was suggested to me, I rejected it completely out of hand. I said I just want to tell what's going on because the house is on fire. But I slowly came to look at this idea as maybe he's onto something. Maybe Aesop's Fables had some good things to say, maybe the Brothers Grimm had some good things to say. So I thought, okay, let's add some folksiness to this. Give it a Burl Ives approach.

PNN: When you tell your fables in the book, animals are the key characters. Why did you choose them?

IBSEN: The animals are the protagonists. I chose Dr. Bison because of the bullheadedness of the character. As you can see on the book cover, he's examining this cute little otter on the exam table. And the weasel guy with the clipboard is scowling at him and evaluating how he's doing his job and if he's doing it effectively or quickly enough.

The weasel is like an interloper in the exam room, which has been my persistent complaint. We have too many guests in the exam room that have a vote into what's going on between the doctor and the patient. We have an insurance bureaucrat deciding what you can or can't prescribe, and a pharmacist deciding if the prescription is legitimate.

Then there's a law enforcement officer who's looking at whether a crime is being committed. Then there's a DEA agent who may or may not have a college education, who's looking at patterns and matrices. Is Dr. Bison prescribing more than other doctors?

Then there's legislators, like the legislators in the state of Ohio that legislated exactly how much I could get for the pain in my chest after it was split open during heart bypass surgery at the Cleveland Clinic.

So it's really crowded in the exam room now.

PNN: You want to get across the point that you can't treat all patients the same way. Everyone is different. How do you communicate that in your fable scenario?

IBSEN: I think it's basically species dependent. By that I mean that different species have different personal attributes. A mouse is going to attack a problem much different than a bison would. Or an herbivore will attack a problem more than a carnivore will.

I guess you could call it a menagerie. There's a bison and a cougar. There's a possum. There's a wise llama. There's a viper in the chapter about breeding resentment. There's a coyote, the trickster who has a lawyer's briefcase and there's a crow. And then the elk. Elk handle their conflicts by keeping the herd intact, surrounding the weakest member so the wolves can't get to them.

My goal is to is to make this seemingly light and then develop it. Story development pulls them in and readers finish the story. And then they're left with curiosity about the pain crisis, rather than revulsion or rejection or resistance or argumentation.

PNN: Take us to the epilogue and the message that you really want to get across to the reader.

IBSEN:  I guess I would say that I didn't leave medicine, medicine left me. I don't want to project some righteous indignation about it. I'm sad about it more than anything else. I don't think this is limited just to the patient-physician relationship. I think it's a cultural phenomenon. And it's just manifested in medicine in this way.

We now have patients that cannot tell their doctor the truth. It's sort of like a teenager who has to lie to their parents. It's like a patriarchal system. The patriarchal system works if the patriarch supports the people in the system. But these days, if you admit that there's a family history of alcoholism, then suddenly you're not a candidate for opiates.

Or this doctor friend of mine who was recently suspended, he's a residency mate of mine. He had a mother and a daughter, both in chronic pain. I think they lived together and one was on hydrocodone and the other on oxycodone. And it turns out their medications may have gotten mixed up. They had a urinalysis and it looked bad.

But if you live in the same household, then maybe you can get your pills mixed up. I mean, you could have that chance. But do you fire somebody for having hydrocodone in their system? In my training, a lab result is something that you respond to, not something you react to. The first thing you do is you repeat the lab test. If you see something that's completely out of the ordinary, then you have to inquire about it.

But in this system, you have to fire the patient, even when there's no evidence that doing urine drug screens make any difference at all about diversion or patient care or anything. Nobody's done a placebo, double-blind controlled study about that.

I'm now seeing some pain refugees from Billings. The pain doctor there retired and the new guy came in slashing everybody’s dose and then he left. All these patients are trying to recover and none of them are oriented towards taking cannabis because they know that if they found cannabis in their urine that they would be fired. Somebody somewhere will say if you have cannabis in your urine, it's obvious that you're selling your pain pills in order to buy your cannabis. That is not obvious to me. Not even remotely

There’s a huge amount of gaslighting going on between the system and patients, that doctors are willing participants in. I mean, my younger colleagues have loans to pay off, so they are not risk takers. Right now, I am quite a risk taker. Because everything's gone. I don't have anything left.

I would say that in medicine today, the wheels are coming off and maybe they need to all come off. It doesn't operate in the same mentor-apprenticeship relationship that I was trained in. I don't know if I would last in medical training today.

I think that the internet has both good and bad things about it. And the good thing is that patients research their ailments or their symptoms and they come in with that. They come in with a differential diagnosis already. And I get to hear that and respond to it.

The great thing about that is what I call the alignment effect. If a patient comes to me and wants to do something that they read about and it's not going to kill them, if I say yes and it works for them, then they're going to be really persistent about following that therapy because it was their idea. Right? If it fails and they come back to me, then they're willing to listen to my point of view on it. And that builds trust.

If only the hospital administrator, pharmacist, insurance bureaucrat and legislator would trust our medical expertise. I think we're in a period of time where expertise is not thriving. Failing to use the expertise of our specialists is really putting us in a bad way, not only in medicine, but in the entire culture.

PNN: Thank you, Dr. Ibsen.

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.”

It’s Not Urgent and They Don’t Care

By Mia Maysack, PNN Columnist

There are no words to convey the extent that I, along with so many others, have endured medical trauma. It’s even more impossible for us to get those who haven't to understand what it's like or the toll that it takes.

A loved one of mine had an injury not too long ago that required a small dose of medical hoop jumping. Just the tip of the broken-healthcare-system-iceberg was enough to leave a lasting impression on them, to the extent they still haven't stopped complaining about it.

But when I attempted to express my own fresh experience with said iceberg, this same person described me as "too sensitive." That is dreadfully inaccurate, especially when you consider I've lived this way for over two decades and they had one adverse experience.

My aim is not to belittle or attempt competitive victimization. I understand how health problems impact us on different levels and in various ways. I simply find the lack of empathy -- yet the simultaneous expectation of it -- to be painfully fascinating.

Within the last few weeks, I've been hospitalized multiple times, essentially back-to-back for the same issue. That's part of what being chronically ill looks like. The difference between these recent visits, as opposed to all the others, is the spite I feel for providers who are supposed to be working for me.

I currently don’t have a primary care provider, so my only option when I have an urgent need is to go to a hospital emergency department. I was in one recently at two o’clock in the morning, freezing on a cot in an isolated exam room.

A nurse came in for the rundown as to why I was there, followed by a brief appearance from a doctor who didn't make eye contact or even face me. He kept his back turned while working on a computer.

The nurse proceeded to speak about me and my situation with Doctor Awesome, as if I was not even there. I interrupted their conversation, because I’ve already endured enough lack of bedside manner and respectfully expressed my concerns and wishes.  I asked for an exam and tests to ensure my medical issue wasn’t progressing, I also needed a prescription to relieve side effects from a medicine I was taking to manage my complications.

After laying all this out in a concise, professional manner, Dr. Awesome finally decides to turn around to face me and dryly asks, “So what brings you in tonight?”

Stunned, I politely responded that I’d previously been to this ER and was advised to return if needed. His reply was that my requests are more of a “clinic thing” and “weren’t necessary.” He then dismissed himself and I did not see him again for the hours I was left alone there. He did not come back to check on me before discharge or bother to report the results of my testing. No one did.

An assistant I hadn’t seen before eventually popped in and provided more warmth than anyone else I’d encountered, just by saying, “Awww, you do not look like you feel very well.” 

I thanked her for the acknowledgement and asked for an exam from anybody who was qualified -- it certainly didn’t need to be Dr. Awesome. She was appalled that I had to ask and left promptly to flag someone down.

So now another person I had never met and who didn’t bother introducing themselves, came in and spent less than a minute with me before they left.

At a different point in my journey, this sort of encounter would’ve completely shattered me, because of how low and how long I’ve been knocked down by those entrusted to aid in healing

Those days are over. Today, I’ll stop at nothing to pursue and obtain what’s in my best interests. Instead of feeling depleted after mistreatment like this, I internalize it as empowerment. I’ve made the decision to give up on them instead of myself, and to continue battling for the sake of my life quality. Even if that means fighting against the harm that they vowed not to inflict in the first place. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

CBD Ineffective for Osteoarthritis Knee Pain

By Pat Anson, PNN Editor

Cannabidiol (CBD) is often touted as an effective pain reliever for arthritis. Studies on animals and anecdotal reports from humans suggest that CBD – the non-psychoactive compound in cannabis -- has anti-inflammatory and pain-relieving effects on joint pain.

But in one of the first randomized, placebo-controlled clinical trials of CBD, researchers at Medical University of Vienna found that CBD is not an effective pain medication for knee osteoarthritis, even at high doses.

The study included 86 men and women who suffered from severe pain due to knee osteoarthritis,  a progressive condition caused by the breakdown of joint cartilage.in the knee. About 10 percent of people over age 60 have knee osteoarthritis (OA).

Half the participants received daily doses of CBD in capsules for eight weeks, titrating up to 600mg per day, which is considered a high dose. The other participants were given placebo capsules with no active ingredient. Neither group knew what they were taking.

The study findings, published in The Lancet Regional Health -- Europe, show that CBD did not have a stronger analgesic effect than the placebo. Adverse events were more common in the CBD group, with over half the participants (56%) reporting diarrhea, abdominal pain, fatigue and other mild side effects.

“Our results do not support the yet clinically unproven hopes for CBD as potential supplement or even replacement of potent analgesics, including opioids,” wrote lead author Sibylle Pramhas, MD, Department of Special Anesthesia and Pain Medicine at MedUni Vienna.

"Our study is the first to provide solid information on the lack of analgesic potential of CBD in a common chronic pain condition, due to the comparatively high oral dosage and the long observation period.”

This isn’t the first time CBD came up short in a clinical study. In 2017, Zynebra Pharmaceuticals tested a CBD gel for knee OA with mixed results. The Phase 2 study did not meet its primary goal of reducing the average pain score, although there were some indications the gel improved function and reduced pain severity. The company has since abandoned plans to use the gel for arthritis pain.

A more recent study of a CBD patch for knee osteoarthritis was withdrawn due to “inadequate funding.” Several other clinical studies of CBD for OA pain are underway or recruiting participants, but no results have been posted.

Currently, osteoarthritis knee pain is treated with analgesics such as acetaminophen (paracetamol), diclofenac, ibuprofen or tramadol. For the time being, they may be the best alternatives for pain relief.   

"CBD is not an alternative for pain therapy for osteoarthritis of the knee, so the search for more effective options must continue," says Pramhas.

The Surprising Connection Between Pain and Politics

By Pat Anson, PNN Editor

“I feel your pain. I feel your pain.”

Bill Clinton was mocked by political pundits for saying that to an AIDS activist while running for president in 1992. Whether he was sincere or not, it was a public display of empathy that helped get Clinton elected.

Clinton may have been prescient about a connection between pain and politics. A large new study suggests that pain could have played a surprising role in the 2020 presidential election. Researchers found that liberals with high levels of pain sensitivity were more likely to vote for Donald Trump, while conservatives who were highly sensitive to pain were more likely to vote for Joe Biden.

Huh? I was skeptical. Initially, so was lead researcher Spike W.S. Lee, an associate professor of marketing at the University of Toronto’s Rotman School of Management.     

“We were honestly not expecting to see this kind of cross-aisle effects of pain sensitivity,” Lee said in a news release. “When we first found it, we thought it might be a fluke. That’s why we ran a replication study. We found it again. We ran extended replications and follow-up studies. We kept finding it.”

Lee and his colleagues ran seven different studies involving over 7,000 U.S. participants to see how pain sensitivity affects our moral and political views. Does it heighten them and make us hold more tightly to them? Or does the pain experience make us more sensitive and accepting of what other people believe?

Lee started thinking about that as a research topic during a dental appointment. He is very sensitive to pain, and asked that a freezing procedure be used to numb his mouth before his teeth were cleaned. Lee found himself enjoying the experience so much that he wondered what having no sensitivity to pain would do to someone’s moral compass.

His research found that liberals with higher pain sensitivity were more likely to endorse traditional conservative values such as loyalty and authority; while pain sensitive conservatives showed more support for traditional liberal values such as caring and fairness.   

The pattern continued when participants were asked about their 2020 voting intentions. As the graphic shows below, liberals (blue line) said they were more likely to vote for Trump if they had more pain sensitivity. Similarly, conservatives (red line) were less likely to vote for Trump over Biden if they were more sensitive to pain.

Journal of Personality and Social Psychology

The pattern not only held up for how participants actually voted in the presidential election, it influenced their support for a diverse group of liberal and conservative politicians, such as Kamala Harris, Mike Pence, Mitch McConnell and Bernie Sanders.

Pain sensitivity also significantly changed the way liberals and conservatives thought about hot button issues such as immigration, global warming, unions, the free-market system and Obamacare.

Does that mean pain sensitivity makes people confused about their political views? Not necessarily. Lee says the more likely explanation is that the pain experience gives people more empathy for others and a greater willingness to look at issues from both sides.

In an age of polarized and often heated politics, that’s not a bad thing. Maybe Bill Clinton was on to something.

The study appears in the Journal of Personality and Social Psychology: Attitudes and Social Cognition.