Insurance Claims Show Lyme Disease More Widespread

By Pat Anson, PNN Editor

A new analysis of insurance claims by the Centers for Disease Control and Prevention suggests that Lyme disease may be far more widespread in the United States than current estimates.

CDC researchers looked at data from MarketScan, a large commercial insurance claims database, and found that Lyme disease diagnoses from 2010 to 2018 were six to eight times higher than the number of cases reported to a federal disease surveillance program.

Lyme disease is a bacterial illness spread by ticks. When left untreated, it can lead to chronic disorders such as fatigue, muscle and joint pain, cognitive issues and other symptoms that are often diagnosed as fibromyalgia, neuropathy and autoimmune disorders.

Most reported cases of Lyme disease occur in 14 states in the Northeast, mid-Atlantic and upper Midwest, especially during the summer months when more people spend time outdoors. Recent studies show Lyme is spreading to neighboring states and is no longer just a seasonal disease, possibly do to the effects of climate change.

The CDC analysis of insurance claims filed by nearly 23 million Americans identified over 140,000 people who were diagnosed with Lyme disease during the study period. That works out to a nationwide rate of 73 cases for every 100,000 people, a rate substantially higher than the 9 cases per 100,000 reported by the surveillance program.

“Age and sex distributions among Lyme disease diagnoses in MarketScan were similar to those of cases reported through surveillance, but proportionally more diagnoses occurred outside of peak summer months, among female enrollees, and outside high-incidence states,” wrote lead author Amy Schwartz, an epidemiologist in the CDC’s Bacterial Diseases Branch.

Schwartz and her colleagues say the larger number of Lyme cases reported by MarketScan may be the result of misdiagnoses, but the volume of claims warrant further investigation.

“Although Lyme disease diagnoses identified from claims data are not supported by the robust evidence of infection required for surveillance reporting, they are a consistent indicator of trends in the healthcare system. In addition, the sheer volume of data available through MarketScan provides potential for new insights into the epidemiology of Lyme disease diagnoses in the United States,” they said.

The CDC findings are similar to a 2017 analysis of insurance claims by the non-profit FAIR Health, which found an unexpected surge in Lyme disease cases during the winter and early spring.

Early symptoms of Lyme disease include fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite. The rash grows in size and sometimes resembles a bulls-eye. Lyme disease is usually treated with antibiotics.

About 30,000 cases of Lyme disease are reported annually by state and local health departments to the surveillance program. The CDC acknowledges, however, that the actual number of cases is probably much higher and that about 300,000 Americans may become infected every year.

Serious Complications Caused By Poorly Treated Pain

By Forest Tennant, PNN Columnist

Most anyone will tell you that blood pressure goes up due to pain. What is almost unrecognized in medical practice today, however, is that untreated or undertreated pain has such profound and devastating effects on the cardiovascular and endocrine systems that it will inevitably shorten the lifespan of individuals with intractable pain syndrome (IPS).

Constant pain elevates adrenaline and glucose at the same time that it overstimulates the autonomic nervous system, resulting in these cardiovascular (CV) complications:

• High Blood Pressure (Hypertension)               

• Elevated Pulse Rate (Tachycardia)                             

• Elevated Cholesterol (Lipids)                       

• Arteriosclerosis  

• Angina Pectoris

• Cardiac Arrythmias

• Heart Attack

• Sudden Death

The body needs a rest from constant pain to rejuvenate and re-energize the body’s CV and endocrine systems. The first goals of pain treatment must include the attainment of at least some pain free or nearly pain free hours, which enables the body to sleep and let the CV and endocrine system recuperate.

Calcium Complications

For many years, patients, families and doctors were bewildered when a chronic pain patient developed osteoporosis, scoliosis, arthritis, or even their teeth fell out. Now we know why. It is primarily because IPS causes multiple abnormalities in the endocrine system that lower calcium levels. 

Intractable pain is a huge stress that never shuts off, so it causes constant demand on the body’s glands to elevate the “Big 3” hormones: insulin, cortisol and adrenaline. This is made worse if pain is untreated or undertreated. 

Over time, the constant elevation of cortisol causes calcium to dissolve and leave the tissues of the teeth, joints and spine. Vertebrae may become so fragile with osteoporosis that the spine may collapse in places and give you scoliosis. When calcium leaves the joints, you get arthritis. People with IPS frequently have fractured hips and knee joints that have to be replaced. 

When cortisol is raised too long by constant pain, testosterone and estradiol levels may drop, and these two hormones are critical to prevent osteoporosis as they function to build bone, joints and teeth.

When cortisol is too high for too long, glucose and insulin are also raised, causing a nutritional state that may reduce vitamin D, magnesium, and other nutrients critical for tooth and bone maintenance.  

All persons with IPS and their families need to know about the cardiovascular and endocrine complications from untreated or undertreated pain. You may also need to inform your medical and dental practitioners about these health risks. Ask them to test you for high blood pressure, elevated pulse rate, high cholesterol and glucose levels. Most can easily test you for osteopenia (early osteoporosis), endocrine function and vitamin D levels.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

Does Chronic Pain Lead to Hoarding?

By Pat Anson, PNN Editor

People living with chronic pain often face stigmas in their daily lives. In addition to being unfairly labeled as drug seekers, pain sufferers are often perceived as lazy malingerers who use their pain as an excuse to stay home, avoid social activities and not work.

Unfair or not, there is some truth to the notion that people in pain are less active physically – and for some that’s led to compulsive hoarding, according to a new study at the University of Florida.

Researchers surveyed over 20,000 people about their hoarding habits and identified over 2,600 cases of “hoarding disorder,” a condition characterized by difficulty in parting with possessions because of a compulsive need to save them. These extreme hoarders were more likely to have chronic pain and other potentially life-shortening medical conditions such as obesity, diabetes, heart problems, high cholesterol and sleep apnea.

On average, compulsive hoarders were about 17 pounds heavier than people without the disorder. They were also more likely to be women, less likely to have a college degree, less likely to see a doctor, and more likely to suffer falls in their home. 

“Hoarding behaviors are associated with limited activity involvement, an increased risk of falls and difficulties with self-care — all of which likely contribute to substantial functional impairment and reduced physical well-being,” lead author Sara Nutley, a data analyst at University of Florida Health, reported in the Journal of Psychiatric Research. 

Hoarding disorder is more than just collecting or being unwilling to part with a few cherished mementos. The American Psychiatric Association says compulsive hoarders save everyday items that most people consider worthless and become emotional at the thought of getting rid of them. Hoarded items are often stored haphazardly, leading to clutter that causes health and safety issues and disrupts hoarders’ lives and living space.

Hoarding not only contributes to health issues, Nutley and her colleagues say medical problems like chronic pain can lead to even more hoarding.

“First, it is possible that profound functional impairment and low levels of health care utilization contribute to the progression of medical comorbidity among individuals with hoarding disorder,” they wrote. “Second, it is possible that individuals with existing medical conditions experience increased impairment in daily self-care activities that lead to the build-up of clutter.

“Medical conditions may worsen hoarding behavior and the underlying causes of hoarding behavior may be a risk factor for both hoarding disorder and medical morbidity.”

The Mayo Clinic says the treatment of hoarding disorder is difficult because many people don’t recognize the impact of hoarding on their lives. If hoarded items are removed, people become frustrated and angry, and start collecting again. The main treatment for hoarding disorder is cognitive behavioral therapy and medications to treat anxiety and depression.  

7 Ways to Treat Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

Intractable Pain Syndrome (IPS) requires a care program custom-made for each individual person, depending on their underlying painful condition and clinical severity.

There are therapeutic, pharmacologic, dietary and physical measures you can take that specifically target the cause of IPS. Step One in finding relief and recovery is to target the cause of the pain, and not just take the “shotgun” approach with only symptomatic pain relievers. A multi-faceted approach is needed.

The 7-component treatment outlined here is to aid patients, families and medical practitioners in formulating an individualized IPS care program

1) Suppression of Inflammation

Underlying Cause: The injury or disease that originally produced the pain may continuously generate inflammation that requires suppression by a variety of means. Common measures to reduce inflammation include anti-inflammatory agents, electromagnetic therapies, local injections or topical agents.

Central Nerve Inflammation: IPS is caused by central nervous system (CNS) inflammation (neuroinflammation) that destroys or damages neurotransmitter systems. Only some treatment agents cross the blood brain barrier and suppress neuroinflammation. Some common agents: naltrexone, ketorolac, indomethacin, methylprednisolone, acetazolamide and  dexamethasone.

2) Sleep Restoration

It is during sleep that the CNS regenerates the neurotransmitters you need for pain control. Adequate sleep is necessary for this to occur. Some common agents: Ambien, trazadone, temazepam (Restoril), amitriptyline, melatonin and Benadryl.

3) Control of Electric Currents

Some drugs now called “neuropathic” normalize electric current conduction, which is erratic due to nerve damage. Some common agents: gabapentin (Neurontin), pregabalin (Lyrica) and benzodiazepines (Klonopin and Valium).

4) Pain Control

The constant pain of IPS is composed of two types of pain: ascending and descending. IPS control requires agents for both types.

Ascending Pain: Some common agents: cannabinoids, opioids, ketamine, clonidine, kratom and naltrexone (if not already on opioids).

Descending Pain: Some common agents: amphetamine salts (Adderall), phentermine, modafinil, methylphenidate, mucuna. 

5) Hormone and Neurotransmitter Supplementation

Groups of hormones now known as neurosteroids, and biochemical molecules known as neurotransmitters, are made in the brain and spinal cord. Their function includes suppressing inflammation, rebuilding damaged tissue and to provide pain control. Analgesic/pain-relieving drugs will not be effective if any neurosteroid or neurotransmitter is deficient. Neurotransmitter testing is now available.

Hormones: DHEA, pregnenolone, testosterone, progesterone.

Neurotransmitters: dopamine-noradrenaline, serotonin, GABA.

6) Anabolic Measures (Tissue Building)

In IPS, tissue degeneration is constantly present due to inflammation. Some genetic connective tissue/collagen diseases such as Ehlers-Danlos Syndrome (EDS) have a built-in, constant tissue degenerating component (catabolic).

Tissue building (“anabolic”) measures are essential to counteract tissue degeneration, and several agents have been identified that do this: nandrolone, human chorionic gonadotropin (HCG), colostrum, deer antler velvet, and amino acid/collagen supplements are recommended.

7) Disease Specific Exercise

Spinal fluid circulates in and around the brain and spine. It washes out biologic waste products such as inflammation. It also brings nutrients to the inflamed and/or damaged nerves for healing.

Exercises that enhance spinal fluid flow include walking, rocking in a chair, and gently bouncing. Practice exercises and stretches that will prevent tissue shrinkage, paralysis and dysfunction of your extremities or other organs that are specific for your underlying condition. 

All seven of these components should be considered for inclusion in an IPS care program. 

Forest Tennant is retired from clinical practice but continues his groundbreaking research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

Grin and Bear It: Why Smiling Makes Vaccine Shots Less Painful

By Pat Anson, PNN Editor

Over the next few months, tens of millions of people around the world will be getting the first injections of COVID-19 vaccines, with some getting a vaccine that requires two shots to be effective.

Whether it’s a shot for the flu, pneumonia, shingles or COVID, no one looks forward to stabbing pain from the oversized needles often used in vaccinations. Is there anything you can do to help relieve the sting from a needle prick?

An unusual study led by researchers at the University of California, Irvine, found an unexpected way to dull the pain: Put a big smile on your face.

Researchers say that a broad smile -- one that elevates the corners of the mouth and creates crow's feet around the eyes -- can reduce the pain of a needle injection by as much as 40 percent. That genuine smile, known as a Duchenne smile, can also lower your stress and heart rate during a needle injection.

If you find the idea of smiling during an injection a little silly, then feel free to grimace instead. Grimacing uses the same facial muscles as smiling and is just as effective at pain relief, according to researchers.

"When facing distress or pleasure, humans make remarkably similar facial expressions that involve activation of the eye muscles, lifting of the cheeks and baring of the teeth," says lead investigator Sarah Pressman, PhD, a professor of psychological science at UCI. "We found that these movements, as opposed to a neutral expression, are beneficial in reducing discomfort and stress."

To test their theory, Pressman and her colleagues found 231 healthy volunteers who self-reported their levels of pain, emotion and distress while being injected in the upper arm with saline from a 25-gauge needle — the type often used in a flu shot.

Before and during the injection, participants were randomly selected to use either a Duchenne smile, a small smile, a grimace or a neutral expression. All four facial expressions were facilitated by holding chopsticks in their teeth.

Those in the Duchenne smile and grimace groups reported 40% and 39% less pain, respectively, during the injection than the neutral group, while participants in the small smile group had 26% less pain.

The Duchenne smile and grimace groups (images C and D) were also associated with slightly lower stress and heart rates.

“Why did these two disparate expressions perform so similarly? As discussed previously, this overlap could be explained by the fact that similar muscle groups are activated in both expressions,” researchers reported in the journal Emotion.

“Grimacing has long been used as a nonverbal indicator of pain and has been manipulated unintentionally via common medical practices from the Middle Ages that tell individuals to ‘bite down’ on pieces of wood and leather during painful procedures. To our knowledge, this is the first experimental test showing that this natural response to pain is helpful in improving the subjective pain experience.”

The researchers aren’t suggesting a return to the Middle Ages or that you bite down on chopsticks the next time you’re vaccinated. But they do think that “device-in-mouth manipulation” and “creative paradigms to manipulate facial expressions” are worthy of future pain research.     

"Our study demonstrates a simple, free and clinically meaningful method of making the needle injection less awful," Pressman said. "Given the numerous anxiety- and pain-provoking situations found in medical practice, we hope that an understanding of how and when smiling and grimacing helps will foster effective pain reduction strategies that result in better patient experiences."

Intractable Pain Syndrome Has 2 Kinds of Pain

By Forest Tennant, PNN Columnist

A major reason that persons with Intractable Pain Syndrome (IPS) experience such misery is that when pain is the constant, 24/7 variety, it has two parts: ascending and descending pain. Both types need to be treated for relief.

Picture your body running on electric currents. In your house, electric currents are conducted by wire. Although there is no good reason to avoid the term “wire” when it comes to the human body, we usually refer to our biologic wires as nerves, nerve roots or neurons.

Unfortunately, any disease or injury to one or more of our “wires” blocks the electric currents that normally flow through the nerves, nerve roots or neurons, and diverts electricity into the surrounding tissue to produce inflammation and pain.

Ascending Pain is caused when pain electricity travels from the disease or injury site up the nervous system to the brain. This is the most common type of pain. For example, if you have a sore knee, pain signals travel from the knee to the brain.

Descending Pain is caused when severe pain from any number of diseases and injuries sends so much electricity into the brain and spinal cord that it accumulates. Areas of inflammation develop and destroy and/or damage the dopamine-noradrenaline neurotransmitter systems that control descending pain.

The excess electricity from these inflamed sites travels down the nervous system into muscles, skin, tendons, joints, fatty tissues, and the large and small peripheral nerves. Small nerve endings in the skin can “burn out” due to all the descending electricity and a skin biopsy will probably show small fiber neuropathy.

How do you know if you have descending pain? You have muscle aches all over which are often labeled as fibromyalgia. You hurt everywhere and experience episodes of overheating, sweating, and cold hands and feet, often at the same time!

Tips to Reduce Descending Pain

The critical point is that usual pain treatment only treats ascending pain, not descending pain. Opioids, antidepressants, anti-inflammatories and muscle relaxants do not usually do much for descending pain.

Each person with IPS must adopt a few simple but specific medical, physical, and dietary measures to attain some relief and recovery from both kinds of pain. You must maintain your dopamine-noradrenaline neurotransmitter systems daily, or you will have increased pain and misery, and believe that more drugs like opioids are the answer.

The understanding of blocked and diverted electric currents has led to the identification and labeling of a group of treatment agents that help normalize electric currents. These are known as neuropathic agents. The neurotransmitter most responsible for the proper conduction of electric currents is called gamma aminobutyric acid (GABA for short). It is synthesized by the body from the amino acid glutamine.

Neuropathic medications include gabapentin, pregabalin, carisoprodol, topiramate, duloxetine, and benzodiazepines.

In addition to neuropathic agents, there are simple “age-old” remedies that still work for most people because they help modulate electric currents so that they don’t divert, accumulate, and cause more inflammation and pain:

• Water Soaking

• Epsom or Herbal Salts

• Magnets

• Acupuncture

• Copper Jewelry

• Walking Barefoot

• Dry Needling

• Petting Fur

• Magnesium

Every person with IPS needs a daily program of neuropathic agents and age-old remedies to minimize the consequences of accumulated electricity.

Forest Tennant is retired from clinical practice but continues his groundbreaking research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and is currently sponsoring PNN’s Patient Resources section.  

Tarantulas May Help Develop New Pain Medication

By Pat Anson, PNN Editor

Venom from a bird-catching Chinese tarantula may hold the key to medications that could someday block pain signals in humans, according to a new study at the University of Washington School of Medicine. Researchers say the oversized, hairy spiders inject a toxin into the birds that quickly immobilize them.

"The action of the toxin has to be immediate because the tarantula has to immobilize its prey before it takes off," said William Catterall, PhD, a professor of pharmacology and lead author of a study published in the journal Molecular Cell.

Catterall and his colleagues were curious how the venom works, so they used a high-resolution cryo-electron microscope to get a clear molecular view of its effect on nerve cells.

They found that tarantula venom contains a neurotoxin that locks the voltage sensors on sodium channels, the tiny pores on cell membranes that generate electric signals to nerves and muscles.

Locked in a resting position, the voltage sensors are unable to activate and the spider’s prey is essentially paralyzed.

"Remarkably, the toxin plunges a 'stinger' lysine residue into a cluster of negative charges in the voltage sensor to lock it in place and prevent its function," Catterall said. "Related toxins from a wide range of spiders and other arthropod species use this molecular mechanism to immobilize and kill their prey."

In humans, sodium channels known as the Nav1.7 channel are essential for the transmission of pain signals from the peripheral nervous system to the spinal cord and brain.

UNIVERSITY OF WASHINGTON

In theory at least, drugs modeled after tarantula venom could be used to target and immobilize the Nav1.7 channel. Previous research has shown that people born without Nav1.7 channels due to genetic mutation are indifferent to pain – so blocking those channels in people with normal pain pathways could form the basis for a new type of analgesic.

"Our structure of this potent tarantula toxin trapping the voltage sensor of Nav1.7 in the resting state provides a molecular template for future structure-based drug design of next-generation pain therapeutics that would block function of Nav1.7 sodium channels," Catterall explained.

While venom-based medicine may sound impractical and more than a little creepy, it’s not unheard of. A pharmaceutical drug derived from cone snail venom is already being used to treat chronic pain. Prialt is injected into spinal fluid to treat severe pain caused by failed back surgery, trauma, AIDS and cancer. Like tarantula venom, Prialt blocks channels in the spinal cord from transmitting pain signals to the brain.  

12 Holiday Gifts on Life With Chronic Pain

By Pat Anson, PNN Editor

If you live with chronic pain or illness and want to have a friend or family member get a better understanding of what you're going through -- here are 12 books and videos that would make great gifts over the holidays. Or you can always “gift” one to yourself.

Click on the cover to see price and ordering information. PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon. As an Amazon Associate, we earn from qualifying purchases. 

Finding a New Normal: Living Your Best Life with Chronic Illness by Suzan Jackson

For nearly 20 years, Suzan Jackson has lived with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — a condition she shares with two of her sons. In this book, Jackson shares what she and her family have learned about living well with chronic illness and finding a “new normal” through strong relationships, healthy emotions and finding joy in everyday life. The emphasis is on living life, not just enduring it.

War on Us by Colleen Cowles

Lawyer Colleen Cowles looks at how the war on drugs and myths about addiction have created a dysfunctional drug policy that prosecutes doctors for treating pain and stigmatizes patients for seeking relief. The U.S. has spent over a trillion dollars fighting the war and has little to show for it except some of the highest rates of addiction, overdose and incarceration anywhere in the developed world.

Ketamine Infusions: A Patient’s Guide by Berkley Jones

Berkley Jones looks at the increasing use of ketamine, a non-opioid analgesic, in treating chronic pain, depression, post-traumatic stress disorder and anxiety. This book is a useful guide if you are considering ketamine infusions and want to know how to select a provider, what to expect during infusions and possible side effects. Although primarily used to treat depression, some pain patients say ketamine is effective in treating neuropathy and CRPS.

Bitten: The Secret History of Lyme Disease and Biological Weapons by Kris Newby

Author Kris Newby began looking into the origins of Lyme disease after she was bitten by a tick and became seriously ill. Her research led her to a secret U.S. government program during the Cold War that used insects as biological weapons to spread disease. Newby believes the Lyme outbreak that began 50 years ago and has infected millions of Americans may have been the result of a military experiment gone wrong.

Vagina Problems: Endometriosis, Painful Sex and Other Taboo Topics by Lara Parker

A memoir by Lara Parker that explores — with unflinching honesty — her battle with endometriosis, a chronic vaginal condition that makes daily life difficult and sex painful. As a teenager, doctors initially dismissed Parker’s pain as “bad period cramps” and suggested her pain was psychological. She nearly checked herself into a mental institution before finally getting a proper diagnosis.

A Quick Guide to CBD by Dr. Julie Moltke

CBD won’t cure you of chronic pain, but Dr. Julie Moltke says cannabidiol can reduce pain, inflammation, anxiety and insomnia — and help make life more livable. This handbook is intended for beginners who want to learn how and when to take CBD, and are puzzled by all the hype surrounding vapes, oils, gummies and edibles on the market.

Pain Warriors by Tina Petrova

A documentary produced by patient advocate Tina Petrova that examines the poor treatment and medical neglect faced by millions of pain sufferers in North America. The film is dedicated to Sherri Little, a chronic pain patient who committed suicide after one last attempt to get effective treatment. Available on DVD or for streaming on Amazon Prime.

Together: The Healing Power of Human Connection by Dr. Vivek Murthy

This timely book by former U.S. Surgeon General Dr. Vivek Murthy looks at the importance of human connections and how loneliness affects our health and society at large. To combat loneliness, Murthy recommends spending at least 15 minutes each day connecting with people we care about and to give them our undivided attention.

Bottle of Lies: The Inside Story of the Generic Drug Boom by Katherine Eban

Wonder why that generic drug you take doesn’t seem to work? About 90% of pharmaceutical drugs are generic and most are manufactured overseas. While generics are promoted as cheaper alternatives to brand name drugs, journalist Katherine Eban found the generic drug industry rampant with greed, fraud and falsified manufacturing data — resulting in many patients consuming drugs that are ineffective or have dangerous side effects.

In Pain: A Bioethicist’s Personal Struggle with Opioids by Travis Rieder, PhD

Travis Rieder is a professor of bioethics at Johns Hopkins University who severely injured his foot in a motorcycle accident and became dependent on opioids while recovering from surgery. In this book, he shares his frustration with the healthcare system and how it often abandons patients to pain, addiction or both. Rieder serves on a CDC advisory panel that is helping the agency prepare an update of its controversial 2016 opioid guideline.

The Chronic Pain Management Sourcebook by David Drum

A comprehensive guide about chronic pain by medical journalist David Drum, who summarizes the many causes, types and treatments of pain. Drum also has tips on managing stress, anxiety, lack of sleep and depression. The book is easy to understand and would be a useful resource for family members, friends and caretakers who want to understand and help someone living with chronic pain.

A Little Book of Self Care: Trigger Points by Amanda Oswald

This well-illustrated book provides 40 simple, step-by-step exercises you can use to manage back pain, migraine and other painful conditions. Author Amanda Oswald explains how “trigger points” — small knots of muscles and connective tissue — can be relieved through self-massage and the “power of touch” without visiting a chiropractor or physical therapist.

These and other books and videos about living with chronic pain and illness can be found in PNN’s Suggested Reading section.

What Does Intractable Pain Really Mean?

By Forest Tennant, PNN Columnist

Many people have chronic pain. If you are over age 60, you probably have some bothersome pain from arthritis, bunions, carpal tunnel, TMJ or a neuropathy. These common conditions cause intermittent pain which may be quite bothersome.

There are some unfortunate persons, however, who have terrible, grueling pain that just won’t go away. It’s there 24/7. It’s the kind that keeps you awake and makes you feel so sick you can’t read, think or socialize, and it will force you to take cover on the couch or in bed.

The pain can be primarily located anywhere on the body such as the hip, neck or back. But when it flares you feel it “all over” and it is intense.

This constant pain means you have a primary or underlying disease or injury that has emitted and sent so much electricity to the central nervous system (CNS) that inflammation forms inside the brain or spinal cord. The brain chemicals and neurotransmitter-receptor systems (NTRS) that normally control and shut down pain become damaged and impaired. The chemicals your own body makes for pain control, as well as pain medications, ​stop working correctly because of the damage to these chemical-tissue receiving sites.

Constant pain means you ​need a program or protocol to treat your basic injury or disease. One that reduces electric impulses and helps rebuild the damage to the NTRS in your spinal cord and brain. Symptomatic pain relievers are usually a must, but they don’t treat or reverse your basic problem.

Intractable Pain Syndrome

Due to new research, we now call the constant pain condition the Intractable Pain Syndrome (IPS). It’s called a “syndrome” because of the many manifestations of the condition.

IPS is a complication of a disease or injury. To obtain some relief and recovery, every person with IPS must know the name of the disease or injury that started the pain, and the anatomic location on the body that first sustained pain. Our studies have found that many persons with IPS don’t have a diagnosis for the cause of their pain and may have even forgotten the site on their body where the pain originated.

Common causes of IPS are:

• Adhesive Arachnoiditis

• Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS)

• Advanced Osteoarthritis

• Genetic Connective Tissue/Collagen Disorder (Ehlers-Danlos Syndrome)

• Traumatic Brain Injury (stroke, trauma)

• Autoimmune Disease

There are other rare causes of IPS, including porphyria, sickle cell disease, interstitial cystitis, Lyme disease and rare genetic disorders.

Vague complaints or diagnoses about back pain, headaches, sprains, strains or “pain all over” are not specific enough to get you much relief or recovery and can’t be considered a legitimate cause of IPS. That’s why it is important to know the specific cause of your pain. What was the specific diagnosis that warranted an epidural injection, surgery or an opioid prescription?

Regardless of what caused your IPS or how long you’ve had it, your original pain site is problematic and needs to be identified. The site is generating inflammation and electricity, and could be scarred in a way that blocks the normal flow of electricity through the body.

The major goal of the IPS Research and Education Project is to bring awareness that simple chronic pain and IPS are quite different entities. A second goal is to bring recognition, prevention and treatment of IPS into mainstream medical practice at the community level. IPS must be known, recognized and treated in the ambulatory medical system like any other long-term care problem such as rheumatoid arthritis, emphysema, diabetes, asthma, or schizophrenia.

It must also be done along with physical, psychologic and pharmaceutical measures that are acceptable to all concerned parties and that don’t require high, risky dosages of abusable drugs.

Forest Tennant is retired from clinical practice but continues his groundbreaking research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and is currently sponsoring PNN’s Patient Resources section.  

One in Five U.S. Adults Have Chronic Pain

By Pat Anson, PNN Editor

Female, white and older Americans are more likely to have physical pain that limits their daily activities, according to a new CDC analysis that estimates about one in five adults have chronic pain.

The study, based on the 2019 National Health Interview Survey (NHIS), adds further insight into the demographic characteristics of chronic pain, a health condition that is more common than diabetes, heart disease and cancer combined.

The survey found that 20.4% of American adults had chronic pain “every day” or “most days” in the previous three months. Of those, a little over a third said they had pain that limited their life or work activities – what the CDC calls “high-impact” chronic pain.  Women (8.5%) were more likely than men (6.3%) to report this kind of high-impact pain.

The likelihood of having chronic pain varied considerably by age, race and whether Americans live in a rural or urban area. For example, only 8.5% of younger adults reported have chronic pain, compared to 30.8% of Americans aged 65 and over.

2019 NHIS SURVEY

The survey found that whites (23.6%) were significantly more likely to have chronic pain compared to Black (19.3%), Hispanic (13.0%), and Asian (6.8%) adults.

Living in rural areas also raised the likelihood of having chronic pain. Over 28% of Americans living in rural areas said they had chronic pain, compared to 16.4% of those living in big cities.

A previous NHIS survey also estimated that 20.4% of Americans adults – about 50 million people -- have chronic pain. Of those, 20 million have high impact chronic pain.

Due to the multidimensional nature of pain and different definitions of its severity and prevalence, estimates can vary widely.  In 2011, the Institute of Medicine released a landmark report claiming at least 116 million Americans have chronic pain.

A recent study warned that middle-aged Americans are experiencing more pain than the elderly, a surprising shift in pain demographics. Researchers at Princeton University and the University of Southern California say acute and chronic pain is rising in working class and less-educated Americans under the age of 60. The findings run counter to long held assumptions that the elderly are more likely to feel pain due to arthritis and other conditions associated with old age.

“This is the mystery of American pain,” researchers reported in the Proceedings of the National Academy of Sciences (PNAS). “If these patterns continue, pain prevalence will continue to increase for adults; importantly, tomorrow’s elderly will be sicker than today’s elderly, with potentially serious implications for healthcare.”

Lancet Study Calls for Improvements in Pediatric Pain Care

By Pat Anson, PNN Editor

An international study by The Lancet has found that childhood pain often goes untreated, unrecognized and poorly managed, leading to chronic pain, disability and other negative consequences in adulthood.

The report by the Lancet Child and Adolescent Health Commission, led by the Centre for Pain Research at the University of Bath, found that too many children live with pain — even in developed countries — and calls for improvements in pediatric pain care, including diagnosis, pain management, social support and psychological treatment.

"Among health-care professionals, it is easy to agree that no child should experience pain if that pain can and should be prevented, avoided, or successfully treated,” said lead author Emma Fisher, PhD, a Versus Arthritis fellow at the University of Bath.

“In practice, however, we know there is ample evidence that children frequently experience preventable pain, and that in high-income settings, with advanced health-care systems and highly educated and regulated health professionals, children and young people experience pain that often goes unnoticed, unreported, or is not responded to, across healthcare including in the Emergency Department, post-surgical care, and in tertiary care.”

Childhood Pain ‘Swept Under the Carpet’

The report provides several examples of childhood pain not being recognized or treated adequately, such as what happened to Caitriona Roberts of Belfast, Northern Ireland. At age 12, she went to her doctor with pain and swelling in her ankle. Initially written-off as 'just a sprain' that would go away, she would spend the next six months living in almost constant pain, until she was referred to a specialist who diagnosed her with juvenile idiopathic arthritis, an autoimmune condition.

Now 28, Roberts has learned how to live and manage the disease. She helped researchers prepare The Lancet report.

"I think this issue has been swept under the carpet for too long. Still today, over 15 years on from my diagnosis with arthritis, I find people, including medical professionals, unaware of the condition or its effects on my day-to-day life. And when I speak to other young people, I find that sadly, very little seems to have changed in terms of how they experience pain or the support they receive,” Roberts said.

Researchers say up to 10% of young people experience chronic pain into early adulthood, with conditions such as arthritis, other types of musculoskeletal pain, recurring abdominal pain, and headaches.  

"This really matters, both for those experiencing pain and those around them but also across wider society. We know that chronic pain experienced in childhood is likely to feed through to adulthood and this has long-term health and economic costs associated,” said Fisher.

She called on providers and policymakers “to sit up and listen to the fact that too many of our young people are in pain and need help."

Myths About Opioids

One obstacle to getting that help is the stigma associated with opioid pain medication, particularly in the United States and Canada, where researchers say guidelines intended to control opioid use in adults are being “inappropriately applied to young people.”

“Substance use disorders and pain medication are both conflated in policy and in the media's portrayal of the North American opioid crisis,” the report found. “Through this media, public views have been influenced to consider opioids as drugs of addiction rather than pain medicine.  

“Health-care professionals, young people, and parents continue to hold misconceptions and believe myths about opioid use in pediatric patients, whereby the media depicts opioids as the villain and the underlying reason for substance misuse. Opioids have their place in pediatric pain medicine. In the context of the oversupply of opioids, childhood pain can usefully be considered a risk factor for long-term harmful exposure to opioids.”

More Than Growing Pains

The report found that improvements in pediatric pain care have come slowly. The last major intervention in the field came in the 1980’s, when it was recognized for the first time that babies experienced pain. Up until that point, a number of routine and major operations, including heart surgery, were carried out on babies without anesthetics.

"Parents tell us about the struggle they have convincing their GP that their child's illness is more than growing pains,” said Zoe Chivers, Head of Services at Versus Arthritis, which funded the report. “While the focus, attention, and dedication in providing quality services to children is consistently in place for conditions like cancer it's woefully absent for childhood arthritis and chronic pain.

"As a society we need to understand that dismissal of arthritis comes at high price and that adults and children living in pain with the condition should no longer be expected to pay it."

The study has four key goals: to make childhood pain matter, to make it understood, to make it visible, and to make it better. One recommendation is to make routine vaccinations less painful and stressful for children, such as allowing parents to be present during the injections and using topical analgesics.

"For many parents and children, a trip to the doctors for routine inoculations will be a stressful and painful experience. This does not have to be the case - we know how we can make the experience less painful for young people, but we're not doing it. This is just another example of how pain has been accepted as an everyday feature of growing up," said Fisher.

COVID-19 Research Could Lead to New Painkillers

By Pat Anson, PNN Editor

A loss of taste or smell is one of the early signs of being infected with COVID-19. Scientists say the virus appears to bind itself to nerves in the nasal cavity, causing inflammation that blocks sensory signals associated with smell and taste from reaching the brain.

Researchers at the University of Arizona believe SARS-CoV-2 may have a similar effect on pain signals and essentially acting as an analgesic. That may explain why nearly half the people infected with COVID-19 experience few or no symptoms, even though they are still able to spread the disease.

"It made a lot of sense to me that perhaps the reason for the unrelenting spread of COVID-19 is that in the early stages, you're walking around all fine as if nothing is wrong because your pain has been suppressed," says Rajesh Khanna, PhD, a pharmacology professor at UArizona Health Sciences College of Medicine Tucson.

"You have the virus, but you don't feel bad because your pain is gone. If we can prove that this pain relief is what is causing COVID-19 to spread further, that's of enormous value."

Viruses cause infections by attaching themselves to protein receptors on cell membranes. Early in the pandemic, scientists established that SARS-CoV-2 enters the body via the ACE2 protein on the surface of many cells. Recent preliminary studies suggest there is another route to infection, in which the virus attaches itself to a receptor called neuropilin-1.

"That caught our eye because for the last 15 years my lab has been studying a complex of proteins and pathways that relate to pain processing that are downstream of neuropilin," said Khanna. "So we stepped back and realized this could mean that maybe the spike protein is involved in some sort of pain processing."

How COVID-19 Blocks Pain Signals

Many biological pathways send pain signals to the brain. One is through a protein called vascular endothelial growth factor-A (VEGF-A), which plays an essential role in blood vessel growth but also has been linked to inflammatory diseases such as rheumatoid arthritis and osteoarthritis. VEGF-A binds to neuropilin in a way that triggers a cascade of pain signals.

In research on rodents, Khanna says his team found that the SARS-CoV-2 binds to neuropilin in exactly the same location as VEGF-A, which “completely reversed the VEGF-induced pain signaling." The virus had an analgesic effect at both high and low doses.

Khanna and his colleagues’ groundbreaking research has been published in the journal PAIN. He also authored a blog post in the Daily Beast to explain the findings in layman’s terms. He says the discovery could not only lead to new treatments for COVID-19, but new ways to block pain signals.

“Sneaky virus, fooling people into believing that they do not have COVID-19. But, ironically, it may be gifting us with the knowledge of a new protein, critical for pain. Two roads emerge in the forest ahead: (1) block neuropilin-1 to limit SARS-CoV-2 entry, and (2) block neuropilin-1 to block pain,” Khanna wrote in the Daily Beast.

In future studies, Khanna say his research team will be examining neuropilin as a new target for non-opioid pain relief. They have already tested existing neuropilin inhibitors developed to suppress tumor growth in cancers and found they provided the same pain relief as SARS-CoV-2 when it binds to neuropilin.

"We are moving forward with designing small molecules against neuropilin, particularly natural compounds, that could be important for pain relief," Khanna said. "We have a pandemic, and we have an opioid epidemic. They're colliding. Our findings have massive implications for both. SARS-CoV-2 is teaching us about viral spread, but COVID-19 has us also looking at neuropilin as a new non-opioid method to fight the opioid epidemic."

American Mystery: Why Do Middle-Aged Adults Have More Pain?

By Pat Anson, PNN Editor

A provocative new study is warning that middle-aged Americans are experiencing more acute and chronic pain than the elderly, a dramatic shift in pain demographics that is putting further strain on the U.S. healthcare system.

Researchers at Princeton University and the University of Southern California (USC) analyzed survey responses from more than 2.5 million people in the U.S. and European Union. They found a unique pattern in the United States: Physical pain is rising in working class and less-educated Americans under the age of 60.

The findings run counter to long held assumptions that the elderly are more likely to feel pain due to arthritis and other chronic illnesses associated with old age.

“This is the mystery of American pain. Using multiple datasets and definitions of pain, we show today’s midlife Americans have had more pain throughout adulthood than did today’s elderly,” researchers reported in the Proceedings of the National Academy of Sciences (PNAS). “If these patterns continue, pain prevalence will continue to increase for adults; importantly, tomorrow’s elderly will be sicker than today’s elderly, with potentially serious implications for healthcare.”

Researchers Anne Case, PhD, and Sir Angus Deaton of Princeton University and Arthur Stone, PhD, a psychology professor at USC, have studied morbidity and mortality rates around the world. It was the husband-and-wife team of Case and Deaton who first reported on the so-called “deaths of despair” in 2015, an unusual spike in deaths of nearly half a million middle-aged, mostly white Americans.

To build on that groundbreaking research, Case, Deaton and Stone looked at different generations born between 1930-90. They found that men and women of all races usually reported more pain as they aged. But that finding did not hold true for less educated Americans who do not have a college bachelor’s degree – about two-thirds of the adult U.S. population.

"Our expectation was that pain would increase as one's age increases, due to physical deterioration and higher probability of chronic illnesses," said Stone. "But our research found middle-aged Americans had higher levels of pain than the elderly, which is especially pronounced for people without a college degree, and the question was, why?"

Researchers say their findings have major policy implications. As less educated, middle-aged Americans become elderly, they are likely to experience more pain, adding further strain on pain management practices and the healthcare system in general.

Many patients already feel their pain care is inadequate, due to lack of access to opioid pain medication and alternative treatments that are either ineffective or not covered by insurance.

“Pain is getting worse for less-educated Americans. This not only makes their lives worse, but will pose long-term problems for a dysfunctional healthcare system that is not good at treating pain.”

— Sir Angus Deaton, Princeton University

Researchers believe the rise in pain in the working class was caused by the deterioration of their social and economic conditions. Less-educated Americans born after 1950 are more likely to experience social isolation, more fragile home lives, less marriage and more divorce, as well as stagnant wages and job loss. This “epidemic of despair” has barely touched more-educated Americans.

Another explanation for the increase in pain is that people could be more likely to report minor pain than in the past. The growing number of Americans who are obese could also be contributing to the problem, because more weight increases the risk of health problems like arthritis, diabetes and cardiovascular disease.

Whatever the cause, researchers say their findings should signal to policymakers that less-educated Americans are experiencing more distress, and that tomorrow's elderly will feel more pain than today's elderly.

"Pain undermines quality of life, and pain is getting worse for less-educated Americans," Deaton said. "This not only makes their lives worse, but will pose long-term problems for a dysfunctional healthcare system that is not good at treating pain."

Report Calls for Overhaul of Sickle Cell Treatment

By Pat Anson, PNN Editor

A new report by the National Academies of Sciences, Engineering, and Medicine is calling for major changes in the way sickle cell disease is treated in the United States, including an end to the discrimination and stigma that many sickle cell patients face while navigating the healthcare system.

About 100,000 Americans live with sickle cell disease (SCD), a genetic disorder that mainly affects people of African or Hispanic descent. SCD causes red blood cells to form in a crescent or sickle shape, which can create blockages in blood vessels that prevent the normal delivery of oxygen throughout the body. As a result, sickle cell patients often suffer from chronic pain, anemia, infections, strokes and organ failure.

Compared to other chronic illnesses, SCD has received little attention from the healthcare community, resulting in a lag in the development of new treatments. Until 2018, only one drug was approved by the Food and Drug Administration to treat sickle cell patients. Bone marrow and stem cell transplants are currently the only curative therapies for SCD.

“People with sickle cell disease show incredible resilience. They often have to become their own advocate to get the treatment and services they deserve — whether in the health care system, at school, at work, or in the community,” said Marie McCormick, MD, a pediatrician and professor at the Harvard School of Public Health, who chaired the committee that wrote the report.

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action calls for the National Institutes of Health to designate SCD as a “health disparity” to incentivize more research, and for the Department of Health and Human Services to fund efforts to identify and mitigate disparities in health outcomes for sickle cell patients.

Lack of Compatible Donors

Although stem cell and bone marrow transplants are the only cures for SCD, it’s often difficult to find compatible donors, especially for children who can benefit the most from treatment.

“Unfortunately, less than one in five individuals with sickle cell disease have compatible donors. Those children fortunate to have a fully matched sibling as a donor enjoy very high success rates with very few complications after transplantation,” said Enrico Novelli, MD, an Associate Professor of Medicine and Director of the Adult Sickle Cell Disease Program at University of Pittsburgh Medical Center.

“The success of the procedure decreases as people get older. For many adults living with sickle cell disease, stem cell transplantation is not an option, either because they are too ill to undergo the procedure, or because of a lack of donor,” Novelli said in an email to PNN.  

“And for those who are cured by transplantation and no longer have sickle cell disease, some challenges remain; for instance, the treatments to prepare the recipient for the donor stem cells may cause infertility, and years of exposure to the disease may leave a mark in terms of organ dysfunction and chronic pain. Thus, it may take a while for some patients to overcome their sickle cell-related chronic pain after a successful stem cell transplant.”

The report recommends that the Centers for Medicare & Medicaid Services and state Medicaid programs, as the lead insurers for most sickle cell patients, explore new payment methods to encourage and pay for coordinated care delivered by certified SCD centers. Insurance coverage is also needed to finance the cost of experimental new treatments, such as gene therapy.

The report calls for more diversity and “cultural competency training” for SCD care providers, as well as better training in managing acute and chronic pain. It also recommends that federal health agencies work with states to standardize newborn screening for SCD and to develop a national registry of people living with sickle cell disease.

Can LSD Be Used to Treat Pain?

By Roger Chriss, PNN Columnist

The well-known hallucinogen LSD may have a new use. A new study published in the Journal of Psychopharmacology found evidence that LSD exerts a “protracted analgesic effect” at low doses.

The study was performed in The Netherlands on 24 healthy volunteers. Three low doses of LSD or placebo were given to the participants, who immersed a hand in near freezing water 90 minutes and five hours after dosing to assess their pain tolerance.

Results from the “Cold Pressor Test” showed that 20 micrograms of LSD “significantly increased the time that participants were able to tolerate exposure to cold (3°C) water and decreased their subjective levels of experienced pain and unpleasantness.”

It is not clear how or why LSD increased tolerance to cold water. The study authors speculate about LSD’s various actions on serotonin receptors, but also note that “an additional or alternative explanation for the analgesic effects of LSD could be hypertension-associated hypoalgesia.”

There were side effects from LSD, even at low doses. LSD slightly raised blood pressure and increased feelings of dissociation, anxiety and somatization in the volunteers. Psychological and cognitive effects were described as “very mild.”

The study has other important limitations. The Cold Pressor Test is not a good analog for real-world acute pain. And healthy volunteers in such studies tend not to be typical of the population at large. They skew young, male, and often have prior experience with the substance being evaluated that most people do not have.

Also, these studies tend not to translate to real-world use. Recent work on LSD microdosing has found “few benefits and significant downsides.”

Findings Hyped

Unfortunately, this preliminary study has already led to hype about the analgesic potential of LSD. New Atlas called it  “an incredible, first-of-its kind trial” and Futurism reported that LSD microdoses were “as effective as opioids at treating pain.”  Interesting Engineering predicted “there could be possible applications of LSD as a non-addictive pain medication.”

The Beckley Foundation, which funded the study, fed the hype with a news release that claimed the analgesic effects of LSD were “remarkably” similar to oxycodone and morphine, but without the risk of addiction.

“The present data suggests low doses of LSD could constitute a useful pain management treatment option that is not only effective in patients but is also devoid of the problematic consequences associated with current mainstay drugs, such as opioids,” said Amanda Feilding, Founder and Director of the Beckley Foundation. “We must continue to explore this with the aim of providing safer, non-addictive alternatives to pain management, and to bring people in pain a step closer to living happier, healthier and fully expressed lives.”

Misunderstanding Pain Research

The Cold Pressor Test is a standard way to assess pain threshold and tolerance. But results in the test vary significantly with water temperature, and the test is not seen as a precise analog with real-world pain. As a 2016 review noted, “No single experimental model can mimic the complex nature of clinical pain.”

Pain is a biopsychosocial phenomenon involving a long chain of interactions that start with peripheral sensory nerve endings and manifest in the conscious mind. Analgesic effect can be achieved locally in nerve endings, as seen with lidocaine injections; or intermediately in the spinal cord, as seen with radio frequency ablation or spinal cord simulators; or centrally in the brain, as seen with psychoactive drugs.

Therefore, comparing analgesic efficacy is far more complex than just looking at outcomes in a simple lab-induced pain model in a handful of healthy people. The LSD study did not test its subjects with multiple substances or combinations of substances.

Further, analgesics have to be safe and effective. Safety includes understanding possible drug-drug interactions. A 2008 review noted that “lithium and some tricyclic antidepressants have also been reported to increase the effects of LSD.”

A 2019 study describes several important biochemical pathways and gene polymorphisms in LSD metabolism, possibly affecting pharmacokinetics and pharmacodynamics. The article concludes that “drug-drug interaction studies in humans are required to further assess the clinical relevance of these findings.”

Analgesics like acetaminophen have relatively few drug-drug interactions. Opioids have a number of important ones, but these are well-understood and can be controlled. By contrast, cannabis is messy. Drugs.com lists 24 major and 353 moderate interactions for cannabis. There is no such list for LSD.

Pain medication needs to be effective as well as safe and reliable. Demonstrating efficacy requires far more than a handful of willing subjects being subjected to a simulated pain experience in a laboratory setting. Demonstrating safety and reliability will require extensive testing, pharmacodynamic studies, and research on drug-drug interactions. LSD may have taken the first step toward becoming an analgesic, but there is a long road ahead.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.