Rare Disease Spotlight: Dupuytren’s Contracture

By Barby Ingle, PNN Columnist 

This month’s rare disease spotlight looks at a painful hand deformity called Dupuytren’s contracture. My father had this condition and I know two other men who have it; one white and one Hispanic. It is most common in older men of Northern European descent, which is why it is known as the “Viking disease.” It occurs in about 5 percent of people in the United States.

Dupuytren’s contracture usually affects the ring and “pinky” fingers, making it difficult to completely straighten them or pick up objects. It develops over time when knots of tissue form under the skin, creating a think cord that can pull one or more fingers into a bended position. Only rarely are the thumb and index finger affected. Dupuytren's can occur in both hands, though one hand is usually affected more severely.

Doctors don’t know what causes Dupuytren's and there is no evidence that hand injuries or occupations that involve the hands contribute to it. My father used to say his condition developed from playing football and getting his fingers smashed between the pads of other players. Interestingly, former NFL quarterback John Elway has Dupuytren’s and recently began appearing in TV commercials promoting a non-surgical treatment.

Dupuytren’s can be very frustrating for those trying to do everyday actives like putting your hands in your pockets, putting on a glove or just shaking hands. As it progresses, the skin on your palm might appear puckered or dimpled. A firm lump of tissue can form on your palm that is sensitive to touch.

I had similar symptoms for several years, but for a very different reason. My right hand and foot curled up due to Reflex Sympathetic Dystrophy (RSD). My symptoms improved after I began infusion therapy in 2009, but my fingers remain affected and the lump in my palm is still sensitive.  

My dad’s fingers were so bent up, he had surgery to straighten them. They just curled up again and never functioned well, before or after surgery. This is known as treatment-resistant Dupuytren’s. There is no way to know if you have a treatment resistant version until surgery is tried.  

Dupuytren's contracture occurs most commonly in men over the age of 50. Men are also more likely to have severe symptoms than women. The condition tends to run in families so there may be a genetic component that has yet to be confirmed. If you are the first in your family to get it, it’s possible that tobacco and alcohol use may contribute to it developing. My dad had diabetes II, which is also a risk factor, although he had Dupuytren's prior to being diabetic.

For those with mild forms of this condition, you can do a few things to help slow its progress. Start with avoiding projects with tight grip requirements, like mechanical work with small tools, or use padding on your hands to protect them.

In some cases, Dupuytren's does not progress or does so slowly. But if treatment is needed, it may involve surgically removing or breaking apart the cords that are pulling your fingers toward your palm. The choice of procedure depends on the severity of your symptoms and other health problems you may have.

There is a procedure less invasive than surgery where a needle is inserted through your skin. If contractures recur, the procedure can be repeated. This option requires little to no physical therapy, but can damage nerves or tendons in your hand.

There is also a medication, called Collagenase Clostridium Histolyticum, which can be injected into your hand so the provider can try to break up the cord and straighten your fingers. The injections are not widely offered and have similar drawbacks to the needling option.

My father chose surgery because his condition was advanced and he had limited use of his hand.  His provider surgically removed the tissue in his palm that was affected by the disease and closed it up with a skin graft. The results were mixed. For a few years, my father could open his hand and spread some of his fingers, but he did not get total strength or movement back and it progressively worsened as he aged. He also had physical therapy while recovering from the surgery, which took about 6 months for him. He said it was worth the try.

If you are looking for a Dupuytren's resource center and support group, one of the better ones I found is run by University of California, San Francisco. They provide a variety of services, including social workers and condition-specific support groups, as well as classes to help patients and their families.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

Why Good Nutrition Is Needed for Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

If you have Intractable Pain Syndrome (IPS) or a condition that commonly causes IPS, such as arachnoiditis, adhesive arachnoiditis, cauda equina syndrome, Ehlers-Danlos Syndrome, traumatic brain injury, stroke or Complex Regional Pain Syndrome (CRPS), you should underpin your treatment program with a nutritional one.

Our research and experience clearly tell us that a proper nutrition program is essential for pain relief and to prevent the progression of IPS. Without a good nutritional program, neither medication or other medical measures will be very effective.

Persons who have IPS develop what is known as a “catabolic state.” The term means that the cellular matrix of the body is slowly degenerating, rather than its normal state of constant cellular regeneration, known as an “anabolic state.”

In IPS, cells and tissues inside and outside of the brain and spinal cord (CNS) progressively degenerate because of IPS’s combined effects of inflammation, hormonal deficiencies, and autoimmune attacks on tissues. If one has a genetic connective tissue/collagen disorder (EDS or other), then cellular catabolism or deterioration is grossly multiplied.

Cellular deterioration in IPS initially attacks small nerve fibers and the small cells in the CNS and skin, but later other tissues may be involved. Muscle mass deteriorates and is replaced by fatty tissue, so weight gain occurs. In late stages of catabolism, severe muscle loss may occur, giving the patient the appearance of starvation and emaciation. Weakness and fatigue set in. Memory, reading ability and logical thinking decline. Medications, including opioids, may not be as effective as they once were.

Persons with IPS must daily attempt to control catabolism through proper nutrition, which helps stop disease deterioration, reduces inflammation, regrows damaged nerves (neurogenesis), alkalizes body fluids, and improves pain relief and energy.

There are five basic components of an IPS nutrition program:

1. Eat protein every day and include protein in ALL meals.

2. Eat green vegetables, and select fruits and nuts

3. Control cholesterol and glucose

4. Daily multi-vitamins and minerals

5. Daily supplements for nerve regrowth and inflammation

Protein is Key

The most critical component of an IPS nutrition program is protein. IPS tends to decrease a desire for protein and promotes a craving for sugar and starches. The major protein foods are beef, pork, lamb, chicken, turkey, seafood, cottage cheese and eggs. Protein drinks and bars can also be used as alternatives.

Why is protein so important? It contains all the fuel (amino acids) needed by the body to make more endorphin, serotonin, dopamine, norepinephrine, insulin and other hormones. Protein builds tissue, repairs cells and helps stabilize blood sugar. Meals with no protein will likely increase pain and inflammation, which prevents healing.

Foods that are mainly sugar and starches (carbohydrates) cause sugar (glucose) to rise in the blood. Fatty foods cause cholesterol to raise in the blood. New research shows that high levels of glucose and fat may cause inflammation and damage to the neurotransmitters and receptor systems that control pain. 

IPS patients should have their glucose and cholesterol levels tested on a regular basis. If abnormally high or low, work with your medical practitioner to normalize them.  

You can help by reducing sugars and fats in your diet, and by eating meals on a regular schedule, even if you are not hungry. This will help balance your glucose and lessen your pain over time.   

You may also want to consider a gluten free trial. Stop eating bread, cereal, noodles and other foods containing gluten for one week to see if you feel better. 

Green Is Good 

Vegetables, fruits and nuts can also help reduce inflammation, alkalinize your body fluids, and promote tissue healing. The best green vegetables are broccoli, kale, brussel sprouts, asparagus, green beans, spinach, snap peas, chard, mustard greens, turnip greens, collards, and cabbage. Avoid eating potatoes and corn, which are loaded with carbohydrates. 

The best fruits are blueberries, pineapple, raspberries, blackberries, cherries, oranges, plums, apples, strawberries, and peaches. Avoid eating bananas. The best nuts to eat are pistachios, almonds and peanuts. 

To help regrow damaged or diseased tissues, take daily supplements containing vitamins B12 and C, collagen, amino acids and natural hormonal agents such as colostrum or DHEA. A daily multi-vitamin and mineral tablet is also helpful, along with a daily plant-based anti-inflammatory agent such as curcumin/turmeric or quercetin. 

Ask yourself: Is what I am eating right now helping or hurting? If you don’t know or want more information, the IPS Research and Education Project has just published a 12-page nutritional program designed specifically for people with IPS. You can download a free copy by clicking here.  

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

Addiction Is the Problem, Not Pain

By Carol Levy, PNN Columnist

The war on drugs always seems to target pain sufferers. We are the number one example of what happens when someone is given opioids. We are the villains, our pain the “gateway” to addiction -- a fiction that no one seems able to dispel, regardless of the evidence and common sense.

Why are we the bad guys? Is it because we are the easiest to single out?

Maybe.

I was watching an episode of the old TV show “ER.” One of the main characters, Dr. John Carter (Noah Wyle), was stabbed repeatedly by a psychotic patient. His pain was horrendous, his need for opioids obvious. Dr. Carter survived the attack, but became addicted. In one scene, he even goes to the extreme of injecting himself with fentanyl.

I began to recall other shows where the plot was the same: injury, opioids to manage the acute pain, and then full-blown addiction.

In an episode of “The Golden Girls,” Betty White's character, Rose Nyland, discloses she was addicted to pain pills. She started taking them 30 years earlier after she injured her back. Her doctor never told her to stop taking them, so she continued using opioids for decades. It was her secret until her roommates figured it out.

It is a shame that TV shows like these don’t include a disclaimer: These characters had acute pain, not chronic. Most people with chronic pain do not become addicted.

It’s a common belief that if you have acute or chronic pain and are given opioids that you will probably become addicted. But has anyone ever studied the two types of pain and their rates of addiction?

I Googled it using the words "chronic pain and addiction vs acute pain and addiction." There were no studies that directly compared the two. The results were either about chronic pain and addiction, or acute pain and addiction. I changed the search terms to “acute pain, opioids, addiction rates.” The results were the same.

Why hasn't anyone looked into the differences in addiction in these two very dissimilar populations?

Why has no one done studies with a population of acute pain patients who became addicted after an injury or surgery? Then compare those rates with chronic pain patients who become addicted?  If they have, I wasn’t able to find them.

Are chronic pain patients being villainized because we are the most visible population?

It is always easier to go after the most desperate and the most vulnerable -- and when it comes to opioids and managing pain, we fit the bill. We will continue to be the bogeyman in the “opioid crisis” until this changes.

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

Opioid Tapering Is Not the Solution to the Overdose Crisis

By Roger Chriss, PNN Columnist

The lawsuits against opioid manufacturers and distributors assume that the fault of the overdose crisis lies with manipulative marketing and medical mismanagement of patients and communities. There is some truth to this, as the HBO documentary “The Crime of the Century” describes. But there is also a lot missing.

The lawsuits and most of the media assume that the solution to the overdose crisis is to reduce opioid prescribing. But a decade of public health data has shown a more complicated picture, as prescribing levels and overdose rates have gone in opposite directions. And changes in prescribing policy were implemented in a heavy-handed way that destabilized patients and nurtured street drug markets.

Policy makers and anti-opioid activists made the overdose crisis worse, as Maia Szalavitz explains in Scientific American.

“If the goal of reducing prescribing were actually to help addicted people and improve pain care, these patients could have been contacted and given immediate access to appropriate treatment for their medical conditions when they lost their doctors. This would have left far fewer customers for dealers,” Szalavitz wrote.

“Instead, however, supply was simply cut and, in some cases, thousands of people were left to suffer withdrawal at the same time. As the crackdown progressed, even doctors who see their patients as benefitting from opioids began either to reduce doses or stop prescribing entirely for fear of being targeted by police and medical boards.”

Risks Are Not Uniform

Under-girding this policy of reduced prescribing is the assumption that risks don’t vary. In other words, it was assumed the risk of addiction and overdose is the same on the first day of opioid use as it is on the 10th or 100th day, regardless of age, gender or other factors.  

But a recent Australian study of patients on opioid medication showed that opioid use and misuse are more complex. Researchers found there was “substantial variation” in how patients answered questions from year to year about their opioid use and behavior. More patients stopped taking opioids on their own than were diagnosed with opioid dependence, suggesting that long-term opioid use does not automatically lead to misuse or addiction.

Further, the risks seem to rise quickly during the first week or two of opioid use, then drop to a stable level. That level is typically maintained over time, except in the face of changes in health status, psychosocial trauma or other medication use.

The risks seem to rise again when patients are taken off opioids. A 2019 study found that tapering actually increased the risk of a patient dying, particularly if the tapering was done quickly or non-consensually.

Irresponsible Advocacy

Anti-opioid advocacy groups like PROP (now officially called Healthcare Professionals for Responsible Opioid Prescribing), FedUp and PharmedOut are quick to point out the risks of addiction and the wrongdoings of Big Pharma.

But there is a clear failure by these groups to address the opioid hysteria they helped create or the unintended consequences of opioid deprescribing, such as sickle cell patients losing access to opioids because of what the NIH calls “rampant fear of opioid addiction and overdoses.” A similar rush to deprescribe is even impacting hospice and cancer patients.

The overdose crisis is rapidly evolving. Drug researcher Dan Ciccarone, PhD, of the University of California, San Francisco School of Medicine, told Buzzfeed that the U.S. is entering a “fourth wave” in the overdose crisis, in which illicit fentanyl and methamphetamine are the main problems, not prescription drugs.

The U.S. has both systemic and systematic issues that have impeded progress in the overdose crisis for decades. Szalavitz, Ciccarone and many others have pointed to better ways forward. From gentle transitioning of patients to harm reduction for people at risk, the U.S. could have done much better, as history now shows. Hopefully, we won’t wait again for history to tell us what we should be doing.  

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. 

Why Do Opioids Stop Working?

By Forest Tennant, PNN Columnist

One of the most common complaints that we receive from people with intractable pain syndrome (IPS) is that opioids quit working when they previously provided good pain relief. They usually report that increasing the dosage was ineffective as well. The cause is known as “opioid receptor failure.”

Every person with IPS who takes daily opioids needs to carefully review the information given here. Once your opioid quits working, it will likely not work again. You can be left without good pain control options.

Patients are at risk for opioid receptor failure if they use a long-acting opioid such as a fentanyl patch, or oxycodone, morphine, hydromorphone or methadone. Intrathecal pump administration of any opioid also raises the risk for opioid receptor failure.

The reason for this is that long acting and intrathecal opioids never leave the blood and spinal fluid. Consequently, they continually coat opioid receptors, and with prolonged use they literally render the receptor incapable of pain relief.

A good analogy is stretching a rubber band too long and seeing it lose its elasticity. The receptors may become permanently altered. Short acting opioids leave the blood and spinal fluid for a time and that lets the receptors recuperate and re-energize, so opioids usually stay effective over a long-time period.

How to Keep Opioids Working

1. Opioid receptors hold up better in patients who take vitamin and mineral supplements, and have diets low in sugar and starch, and high in proteins and green vegetables.

2. Hormone levels must be normal to keep opioids effective. Opioid receptors require adequate blood levels of testosterone, cortisol and pregnenolone.

What To Do If Opioids Quit Working

Here are six recommendations to try, but remember when opioids quit working, they may not work again.

1. Get a hormone test for testosterone, cortisol and pregnenolone. If you have a deficiency, start hormone therapy and continuously raise the dosage over a 6-week period until your hormone level is normal.

2. Start a nutrition program with vitamins, minerals, and a low sugar/starch, high protein/green vegetable diet.

3. Switch to a short acting opioid, if possible.

4. The addition of an adrenaline or dopamine stimulant such as Adderall or Ritalin may help.

5. Get an injection of ketorolac to determine if this potent anti-inflammatory analgesic may provide some pain relief.

6. Take taurine 4,000-8,000 mg per day for 5 days. If there is improvement, continue at 2,000 to 4,000 mg per day.

If you are doing well on a long-acting or intrathecal opioid, don’t stop. Some persons on long acting and intrathecal opioids do well for years. But don’t get overconfident. Opioid receptor failure can be sudden and unexpected. 

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

Rare Disease Spotlight: Vulvodynia

By Barby Ingle, PNN Columnist

This month in our Rare Disease Spotlight we’ll look at vulvodynia, which causes chronic pain and discomfort around the vulva, the opening of the vagina. About 15 percent of women will have vulvar pain at some point in their lives.  

I first learned about vulvodynia a few years ago at a medical conference. It was described to me by a woman who has it as the feeling of a chain saw cutting into her private parts. Quite the visual description. It made me stop to pay attention.  

There are many causes for vaginal pain. These range from hormonal changes, nerve conditions, eczema, psoriasis, endometriosis, anxiety, depression, vaginal atrophy and vaginal dryness. Often, multiple causes contribute to vaginal pain. 

There are two main types of vulvodundia: generalized vulvodundia and localized vulvodunia. The latter is also known as vestibulodynia, which occurs when there is any kind of touch or pressure near the vaginal opening that causes irritation. Burning, stinging or itching can be triggered by tampons, cotton swabs, tight clothing, toilet paper and sexual contact.  

For women with generalized vulvodynia, the pain occurs spontaneously and has no known cause. Often we focus on women when we look at pelvic pain. But men can also experience pelvic pain and conditions. A similar disorder to vulvodynia is known as male genital dysaesthesia.

Vulvodynia can resolve within months or become chronic. It can be so painful that some activities feel unbearable, such as sitting for long periods, riding a bike or having sex. If you experience pelvic pain, you should avoid those activities until you see an OB/GYN doctor, physical therapist or primary care provider.  

Some of the symptoms of vulvodynia include vaginal dryness, itching, or inflammation. These can appear with pain in the vagina or pelvis. Pain can increase during sexual intercourse. It may also cause sexual dysfunction, uncomfortable tingling and burning pain.  

Fortunately, there are some potentially helpful treatments. These options include acupuncture, biofeedback, cognitive behavioral therapy, nerve blocks, nerve pain medication, and oral and topical analgesics. You can also try a pelvic floor therapy to strengthen and desensitize the pelvic region. Avoiding irritants and practicing good hygiene may also help. 

There are some new medications being developed in clinical trials for vulvodynia, but they could take years before they are available. In the meantime, physicians may provide patients with vaginal estrogen in low doses, as well as lidocaine. Systemic hormone therapy is associated with an increased risk of heart attack, stroke, blood clots and other complications. Be sure to talk to your provider about the risks involved with vaginal estrogen treatment before starting hormone therapy.

If you have vulvodynia, there are some private Facebook groups where you can get support, such as Vulvodynia Support and Vulvar Vestibulitis Syndrome (VVS) & Vestibulodynia & Vulvodynia Awareness. The National Vulvodynia Association is also a good resource.

So much emphasis in our society is put on sexual health, especially for men. Having lived through endometriosis myself, I know pelvic health is important. Women deserve good sexual health too.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

Lessons Learned From the ER

By Victoria Reed, PNN Columnist

Many people have a need to use the emergency room at some point in their lives. As a person with degenerative disc disease, there are times when my chronic back pain is exacerbated by an acute pain event that causes my back to occasionally go out.

By “out” I mean my back seizes up, stiffens and excruciatingly hurts. It doesn’t seem to take much to trigger an onset of pain. One time it happened when I tried to get up from a seated position off the couch. Another time it occurred when I bent over slightly to get something out of a drawer. A third time was triggered by vomiting from a stomach bug, so not only was I sick, I could barely move. Unbelievably, a fourth episode was caused by a sneeze!

During these episodes, I can’t walk or move without significant pain and I need assistance from my family. I will usually be bedridden for the better part of a week or two. One time it was so bad that I had someone take me to the emergency room to try and get some relief.

At the time, I was receiving treatment with a mild prescription opioid for my other chronic pain conditions. However, the medication was not doing anything for the acute pain.

At the ER, the staff was generally compassionate and treated my pain. I was sent home with a small amount of a stronger pain medication to use for a few days. After a while, the back started to calm down and I went back to my normal daily pain level.

VICTORIA REED

Subsequently, I had a follow up visit with my pain management doctor. I didn’t like the look on his face when he walked into the room. This doctor had always been reluctant to treat my back pain with anything other than spinal injections, which were no longer effective. He confronted me about the ER visit and was worked up into a lather about it! He implied that I was drug seeking. Wait, what? No, I was not seeking anything other than pain relief.

I explained that my trip to the ER happened on a weekend, so I wasn’t able to call his office. Regardless, there was no convincing him otherwise. He refused to renew my opioid prescription, but didn’t discharge me from the practice. I walked out of the office shocked, hurt and angry because in my mind, I had done nothing wrong.

I thought it was a basic human right to seek treatment for excruciating pain. I still believe that. But that incident made me realize that some doctors just don’t see it that way and think everyone is drug seeking.

Back then, I was younger and inexperienced with the specialty of pain management. I was unaware that I should get prior approval before receiving any opioids from anywhere else. There had been no contract signed, nor any discussion of what the procedure was.

Ultimately, that trip to the ER for an acute episode of back pain caused me to lose my regular pain medication. Needless to say, I never want to go through that experience again! 

Fortunately, I have since been accepted for treatment by a wonderful, compassionate pain management doctor and have been 100% compliant with the procedures and the pain contract that I signed.

On another occasion, I went to the ER during an acute flare of my rheumatoid arthritis, which caused extreme pain and swelling in many joints. The low dose steroid that I took daily just wasn’t doing much and my stomach doesn’t tolerate higher doses very well. My intent in going to the ER was to obtain a higher dose steroid through an IV that would bypass the stomach.

The first question I was asked as I was being triaged was, “Isn’t RA a chronic illness?” Already, I could see where this was going.  I replied, “Yes, but I’m having an acute flare.” That got an eyeball roll from the ER provider, but once I made it clear that I was not seeking any opioid medication, they were willing to treat me with the high dose IV steroids that I had requested.

I felt that if I didn’t say everything the right away, they would have labeled me as a drug seeker and turned me away altogether.

There is opioid hysteria going on that changes the way pain patients are treated and viewed. How do we use the ER without fear of being labeled as drug seekers? Acute, uncontrolled pain needs to be treated, regardless of whether we are already under care for treatment of chronic pain. All patients deserve to be treated with compassion and fairness.

I would definitely think twice (actually 3 or 4 times) before I go to another emergency room for treatment. We should not be afraid to go for fear of being labeled a drug seeker, nor should we have to be afraid of losing our doctors and medication. The negative stigma associated with prescription opioids is real and ultimately hurts an already vulnerable population of patients.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. PNN invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

Are Prescription Opioids Really the Same As Heroin?

By Roger Chriss, PNN Columnist

The new HBO documentary “The Crime of the Century” is garnering a lot of attention for its take on the opioid crisis. In the documentary, Dr. Andrew Kolodny, the founder of Physicians for Responsible Opioid Prescribing (PROP), claims that prescription opioids are “essentially heroin pills.”

This is a common claim. Dr. Corey Waller, an addiction and emergency medicine expert, recently testified in a West Virginia lawsuit that opioid drugs and heroin are "identical."

"The brain doesn't know the drug you just gave it," Waller said. "It just knows the action that it has."

But it’s not quite that simple. There are two standard ways to look at drugs: pharmacology and epidemiology. The former takes into account a drug’s chemical structure and mechanism of action in the human body. The latter looks at the public health effects of a drug.

Opioid Pharmacology

The National Institute on Drug Abuse (NIDA) explains that heroin is a type of opioid made from poppy plants that is “chemically similar and can produce similar effects” as prescription pain relievers.

But chemically similar does not mean functionally identical. Small chemical differences affect how quickly a drug is absorbed, how strongly it acts and how long it remains in the body. The specific action of each opioid drug at the various mu, kappa, and delta opioid receptors also varies, creating differing levels of analgesia and other effects.

For example, oxycodone’s chemical composition makes it a particularly powerful opioid.

“What's unique about oxycodone relative to other opioids is the speed at which it's presented to the brain,” anesthesiologist Dr. Heath McAnally explained in a recent MedPage Today op-ed. “And in that regard, oxycodone reigns supreme (rivaling heroin), likely having to do with the fact that oxycodone's transport across the blood-brain barrier is considerably faster and more efficient than that of other opioids.”

Further, oxycodone is more active at kappa opioid receptors, possibly explaining the harder withdrawal that some people experience. It also acts more strongly on mu receptors, which may explain its greater euphoria. Morphine, by contrast, is more prone to histamine effects like itching and is associated with less positive feelings.

The opioid tramadol is also a serotonin-norepinephrine reuptake inhibitor, while tapentadol is a norepinephrine reuptake inhibitor. Some people do not tolerate tramadol well, and there is less abuse of tapentadol than other prescription opioids. They are very different than heroin.

Opioid Epidemiology

A 2013 study found that about 80% of heroin users first misused prescription opioids, but in more recent years heroin has become the first opioid people abuse in many cases. Heroin’s so-called “capture rate” -- a proxy for the addictiveness of a substance -- is thought to be about 25 percent.

By contrast, NIDA says about 8-12% of people on long-term prescription opioids develop some form of opioid use disorder, and less than 4% of people who misuse prescription pain medication start using heroin within five years.

Among prescription opioids, oxycodone is the most abused. According to a 2020 DEA report, the diversion and abuse of oxycodone “has become a major public health problem in recent years.”

Street prices and illicit sales are similarly revealing. Prescription opioids sold illegally are not all priced the same, nor treated with the same level of interest. There is a clear hierarchy, with oxycodone on top.

But the key driver in the overdose crisis today is illicit fentanyl made in clandestine labs and sold illegally on the street or online, often adulterating heroin or used in counterfeit oxycodone or Xanax pills.

Illicit fentanyl’s impact on the U.S. overdose crisis cannot be overstated. Other opioids, including heroin, do not come close to its level of abuse, addiction and death. Meanwhile, countries like Germany have not seen an opioid crisis, even though Germans are the second largest consumers of opioids worldwide.

It is also important to note that prescription opioids are medically essential, not only for pain management but also when sedating Covid-19 patients for ventilator use, for controlling air hunger in congestive heart failure, and for hospice and palliative care. Prescription opioids are medically useful in ways that heroin is not.

The claim that prescription opioids are identical to heroin does not hold up well. It obscures important information about opioid pharmacology and epidemiology. It may make a good soundbite, but it doesn’t shed light on the risks of opioids or how to address the overdose crisis.

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. 

What HBO’s ‘Crime of the Century’ Doesn’t Tell You

By Dr. Lynn Webster, PNN Columnist

About 30 years ago, when I opened a pain clinic, I met a patient who made a lasting impression on me. She was a middle-aged woman who sat on my examining table with hunched shoulders and an unsmiling expression. Dejectedly, she began to tell me about her experiences: living with severe, chronic pain; being passed around by hard-hearted doctors; and being ignored or misunderstood by her family members and friends.

Her words, voice, demeanor saddened me. It wasn’t so much that her pain conditions were unforgiving – they were – but my realization that she was always alone with her pain. She didn’t expect me to believe her, she was just going through the obligatory motions of a life of being unseen and unheard.

I would go on to treat thousands more patients with chronic pain over the next decades, each with unique and complex conditions, but they showed up remarkably and tragically similar to that middle-aged woman. They were as invisible as their pain conditions.  

A Narrow Perspective of Opioids

I thought about this particular patient after seeing the HBO documentary “Crime of the Century” and its terribly incomplete perspective of opioids. It occurred to me that the visceral reaction of most viewers would be, "Why are opioids even being used?"

In part, I agreed to be interviewed by Alex Gibney, the director of the documentary, to educate why opioids are still prescribed, despite their risks. After months of exchanging emails and having conversations with a producer, I decided that speaking on the record would be a calculated risk. As a doctor who had prescribed opioids, and who had lost patients because of their pain, I had been confronted by tough interviewers in the past.

The interview reopened a painful episode when a patient under the care of my pain clinic died — despite the treatment we provided, not because of it. The interviewer asked me about my patient's death. I chose not to address it during the interview out of respect for those involved, and I will refrain from doing so in the future.

A claim that I must address, however, is speaking fees. The documentary says that I was paid hundreds of thousands of dollars in speaking fees which supposedly influenced my prescribing practices. The fact is that I was paid a nominal amount in speaking fees. The purpose of those speaking engagements was to educate clinicians about the safest ways to treat people in pain, not to encourage them to use opioids. At no time ever did I advocate for the use of any branded drug.

Gibney’s comment in an NPR interview that I was “trying to preach the gospel of the opioid” during my career is patently false. If critics can’t distinguish the difference between continuing medical education and being pro-patient (which I devoted my career to) and corporate shilling and being pro-opioid, then that’s their problem. They may want to rethink their profession of telling a story based in truth about a complicated topic.

Narrative over Nuance

Beyond the erroneous claims about me, my fundamental problem with the documentary is its totalizing depiction of an extremely complicated and often confounding societal predicament. According to the documentary, all nuance must comport with the narrative. Deaths due to opioid overdoses – all tragic – are placed under a spotlight, but deaths because of chronic pain, often complicated because of restricted access to opioids, are left alone in the dark.

This narrative could accelerate flawed policies already gaining traction. More policy decisions like the 2016 Centers for Disease Control (CDC) opioid prescribing guideline, could have a further chilling effect on opioid prescribing — despite the fact that lowering the number of opioid prescriptions does nothing to reduce the number of opioid-related overdose deaths.

The documentary appropriately highlights how opioids can, and do, lead to addiction and deaths. But the scientific fact is that not everyone who takes opioids gets addicted or dies; comparatively few do. The benefits of using some opioids outweigh the risks for many people with severe chronic pain. For a certain patient category, opioids can be the difference between life and death, and happiness and misery.

Having studied addiction for my entire career, I am deeply sensitive to the propensity of some people to be harmed by opioids. I also am deeply sensitive to intractable pain for which there are no treatment options today other than the use – as judiciously as possible – of opioids. My experience with patients confirms two things: opioids kill, but so does pain. We cannot continue to treat these outcomes as mutually exclusive.

We must resist the temptation to further restrict or ban opioids for people who desperately need them. Instead, physicians must be allowed to fulfill their professional responsibilities and uphold their oaths, evaluate patients with complicated needs, apply proper discernment, and treat their patients in accordance with the best available scientific evidence.

A CDC disease expert, DEA officer, member of Congress, activist, or documentarian should not ever attempt to practice medicine. 

People Suffer Needlessly

Today, one in five American adults suffers from chronic pain, or pain lasting longer than 12 weeks. Chronic pain is a full-blown crisis, not unlike the opioid crisis. Yet we hear precious little about the chronic pain crisis. Most people with pain silently, if unwillingly, endure their conditions. Few of us would listen to them, even if we had the opportunity.

Thirty years ago, I waited until my patient had finished telling me about her experiences. Then I simply said, “I believe you.” Hearing those three words, she burst into tears of relief. Few people had been willing to take her at her word when she told them her life had been derailed by unremitting pain. Hers was among the millions of voices that were, and remain, unheard.

The documentary’s central claim is that marketing opioids is a crime and was understood as such at the time when they began to be used to treat non-cancer pain. The use of opioids in appropriate circumstances for a certain kind of patient was not a crime then, nor is it today. As long as such narratives continue to take root, we shouldn’t be surprised if one “crime” produces another masquerading as a solution.

Lynn R. Webster, MD, consults with the pharmaceutical industry. He is author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. You can find Lynn on Twitter: @LynnRWebsterMD.

What Would Sherlock Holmes Say About the Opioid Crisis?

By Carol Levy, PNN Columnist

“It is a capital mistake to theorize before you have all the evidence. It biases the judgment.” — Sherlock Holmes

It is also a mistake to mischaracterize or lie about evidence. But this is what is happening with the opioid crisis and with pain patients. Here’s an example of theorizing about opioids by Johns Hopkins Medicine in “The Science of Addiction.”

“For some time in this country we believed patients weren’t at risk of addiction. No one knows for sure the percentage of those who are at risk. What we do know now through an annual survey of drug use in the U.S., when people were asked if they had used heroin, researchers found that 50 percent of those who had also had a longtime history of opioid use and 50 percent of those went on to have problematic heroin use.”

One would have hoped Johns Hopkins would do better than “No one knows for sure” and then openly theorizing that pain patients inevitably become addicted to opioids and that many turn into heroin addicts.

There is no explanation of who had a “longtime history of opioid use,” what type of opioids they started with, or why they turned to heroin. But this is the kind of public messaging we see all the time about opioids and pain patients. 

Recently on the KevinMD medical blog, a pediatrician posted his story of the struggles he had as a medical student and doctor getting diagnosed for fibromyalgia. He also wrote about the problems he had getting appropriate treatment and how many of his colleagues were questioning whether fibromyalgia was “real” or not. 

A physician left a comment to the article (since deleted) saying this: “In my experience with musculoskeletal disease, at least 50+% of those who have been given the diagnosis, really don't have a disease other than secondary gain, ie, disability and pain meds.”  

I replied with a comment of my own: “It sounds like you have a bias against those whose complaint is body pain; and I have to assume that includes those with dx (diagnosis) of fibro and CRPS. It is people like you who make it so much harder for people like us to get proper care from the medical community.”  

The physician responded with: “You're probably partially right.” 

It’s a sad commentary, but a perfect example of a doctor theorizing about his patients with no data or evidence, except that they are coming to him with a pain complaint. We know the problems with both issues: Pain patients are given opioids. There is an opioid crisis. Who better to go after than people who need opioids for a medical reason? 

Our pain is invisible. Doctors mostly have to rely on what we tell them about our pain. It is a lot easier for them to say, “I don’t believe this patient” than to take the time to truly evaluate not only our pain, but what it has done to our lives. How our functioning and interacting in the world has been impacted by the disability caused by the pain. That is evidence. Disbelief is merely theory. 

This reminds me of another Sherlock Holmes story:

 Holmes and Watson are on a camping trip. In the middle of the night Holmes wakes up and gives Dr. Watson a nudge. "Watson," he says, "look up in the sky and tell me what you see."

"I see millions of stars, Holmes," says Watson.

"And what do you conclude from that, Watson?"

Watson thinks for a moment. "Well," he says, "astronomically, it tells me that there are millions of galaxies and potentially billions of planets. Astrologically, I observe that Saturn is in Leo. Horologically, I deduce that the time is approximately a quarter past three. Meteorologically, I suspect that we will have a beautiful day tomorrow. Theologically, I see that God is all-powerful, and we are small and insignificant. Uh, what does it tell you, Holmes?"

"Watson, you idiot! Someone has stolen our tent!”

Like Watson musing about the stars, we are constantly told that opioids are addictive and therefore patients on opioids must become addicted. They can't see our pain on an x-ray or in our blood work, so therefore it must not exist.

I'll give Mr. Holmes the last word: “There is nothing more deceptive than an obvious fact.”

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

Finding Hope in the Strange Medical Saga of Howard Hughes

By Donna C. Gregory

During much of the 20th century, Howard Hughes was known as a risk-taking aviator, award-winning filmmaker and playboy to Hollywood starlets. But there was another side of Hughes’ life that only his physicians and those closest to him knew.

There was actually a medical reason behind Hughes’ odd, daredevil personality. He lived with obsessive-compulsive disorder for most of his life, and that condition likely contributed to him sustaining multiple traumatic brain injuries and ultimately developing intractable pain syndrome in his later years.

During the 1950s, when Hughes disappeared from public life, most people believed his reclusive lifestyle was due to his eccentric personality, when in fact he was so debilitated by chronic pain that he was mostly housebound.

Forest Tennant, a retired physician who specialized in addiction and pain medicine for most of his medical career, has investigated Hughes’ medical history for nearly 50 years. In 1978, Tennant testified as an expert medical witness in a lawsuit related to the cause of Hughes’ death.

Now, more than 40 years later, Tennant has chronicled Hughes’ fascinating medical history into a new book entitled, “The Strange Medical Saga of Howard Hughes.”

I recently spoke with Tennant about his book. We hope you enjoy this long-form interview.

During the 1970s, you were an expert witness during a lawsuit related to the cause of Howard Hughes’ death. What inspired you to write the book now?

Forest Tennant: We did not know, from a medical point of view, what happened to Howard Hughes because we didn't understand his injuries. We knew that he was ill. We knew he was sick. We knew he was a recluse. He had all these different problems, but we really didn't know what had happened to him. We didn't understand intractable pain syndrome and traumatic brain injury until just in recent years.

The second reason why I've chosen now to write it is that it dawned on me that I have all this information, and I now have the time to do it and the interest. A few years ago, I wrote a small paper about Howard Hughes, Elvis Presley, John Kennedy and some of the other famous people who had pain problems, and it was such a hit that I decided to take what I know before I pass on and get it down and write it so it will be kept for posterity.

I've come to realize that some of these famous people have these strange medical sagas. Bizarre medical histories should be put down as history and cataloged as history for the future.

[There’s a] third reason why I decided to write [this book] now. I think everybody who has one of these conditions ought to read [about] their history.

Why do you think it’s a good idea for people with traumatic brain injury, intractable pain syndrome or obsessive-compulsive disorder to read your book?  

First off, it'll give you hope. I think one needs to understand that there was a man who suffered terribly and was able to function and perform beyond any human expectation despite being terribly ill.

I think that's a point that's gotten lost in all the glamour and the money and the politics of the day. People forget that sometimes somebody who's terribly ill, has pain and suffering, but still wants to contribute, can do it.

Howard Hughes had the money to hire the best [physicians]. He got the best medical care there was. People [today] think in terms of one drug for this illness, one vaccine for this virus [but physicians back then] just didn't prescribe medicines or give a shot. They were real doctors who did a lot of different things to help people survive to the maximum that their diseases would allow, and I think that this is very important for people to understand.

And Howard Hughes, you just couldn't find a better story or a person who survived against all odds.

After about ten years [following his plane crash in 1946], here was a man who could hardly be in the public. He's in pain. He can't even cut his fingernails or comb his hair half the time because it hurts too bad. He obviously can't have a marital life. His sex life is gone. He can't work normally.

Yet he decides ... in 1966, at age 60, to change his career. He decides he's going to give up aircrafting and making drones and financing all that stuff and move to Las Vegas. Go into creating a new Las Vegas, which exists to this day. For someone at his age to do that, and as sick as he was, is amazing.

Even though Hughes was amazingly successful throughout his life, how debilitated do you think he was as a result of living with traumatic brain injury, intractable pain syndrome and obsessive-compulsive disorder?

He had five airplane crashes and survived. They say cats have nine lives. I think I said in [the book that] Howard Hughes must have been a buddy of those cats.

About 10 years after his last crash, he was … homebound or bedbound and in palliative care. He also got to the point where he couldn't walk after his hip surgery, so he was quite debilitated. People think that he was just a recluse because he was a nutty character, but after about age 55, he was really not very capable of showing up in the public, and he didn't.

People that I have treated, and I've treated many who are about as sick as he was, they all are homebound or bedbound. They're not interested in going out to a lot of social events or even shopping. They're pretty reclusive.

In his case, he could afford a luxury suite in a hotel with the best doctors and aides. Somebody wrote a book and said, "Howard must have been very miserable and sad and alone." This guy had people around him right up to the day he died and the best hotels, the best food and everything. A lot of people would trade their nursing home for what he had!

That's definitely a different way of looking at Hughes. Most of the general public just thinks he was eccentric but that’s not why he was a recluse, was it? It was actually because he was living with severe chronic pain.

Another thing, in those years there was no treatment for these things. Nobody knew how to treat obsessive-compulsive disorder. Incidentally, he started taking Valium when it came on the market. His doctors prescribed it to him in about 1962 or 63. He actually started to function much better.

But again, he's having to take codeine every couple of hours. He takes Valium. He overuses medicines at times, but he was also legitimately sick with his traumatic brain injury, his obsessive-compulsive disorder and his intractable pain syndrome. He had three terrible conditions which, at the time of his life, no one knew how to treat any one of the three.

He was obviously very, very wealthy, and he was able to afford the best doctors in the world. But I think it's interesting, and this happens even today, that even if you have all of the money in the world, sometimes the best doctors still can't get you well. This was the case for him, wasn’t it?

Oh, absolutely. They were the very best doctors that Los Angeles had to offer. They were highly qualified. Incidentally, I'm the last person to probably ever talk to his last three doctors, the three doctors that were caring for him when he died. I got a chance to meet all of them and talk with every one of them, and these were first-class doctors.

They just told me they knew two things about his case. They knew that he had a strange medical condition. They knew that he was different but they didn't know why. So fundamentally, they were treating symptoms as they came up with Hughes.

They did a good job of treating what they knew and what they could do. It's always great to sit here 30 years later and say, "Oh, the doctors should've done this and done that," but you'd better ask the question was that medicine or that procedure even known at the time? And, in Hughes' case, it just wasn't.

How would his treatment differ today?

Oh, dramatically. I am sure that he would've been put on medicine to control his obsessive-compulsive disorder, probably in his teens or in his 20s. It was his obsessive-compulsive disorder that was his undoing.

In 1929, he was done making this film, “Hell's Angels,” and you'll see it in the book he decides to fly this scout plane. All the experts told him, "Don't fly that plane under 200 feet above the ground [because] it's going to crash."

Well, [with] his obsessive-compulsive disorder, [his viewpoint] was, "You can't tell me what to do. I know everything."

So he goes ahead and does it, and sure enough he crashes and has head trauma. After that, he was never the same.

But I think as bad of obsessive-compulsive disorder as he had, today I am sure that he would've gotten into the hands of a good psychiatrist or a good neurologist or even internists today and put on some of the medications that are available for that condition. [If that had happened], he may never have had all those head traumas. You'll see in the book how many traumatic instances this guy had.

The medications that he was given, the codeine for intractable pain syndrome, is not a very good medication. Of course, back then, there was no such knowledge on intractable pain. There was no such knowledge of long-acting versus short-acting opioids or neuropathic agents, to say nothing of other new drugs we're using. So it would’ve been a whole different situation.

My hope is when doctors read [the book], they would understand that Howard Hughes would not have to end up like he did with today's treatment. I think that's one of the bottom lines, medically, of his history. You don't have to end up like Howard Hughes because we have the technology to take care of it.

And also, modern medicine is highly criticized, like practically everything today, but so many advances have been made in the last generation or two that you don't have to see what happened to Hughes. He would have gotten treatments that would be quite different. I think that the medical profession and even the pharmaceutical profession can give themselves a little pat on the back after you read about these cases because we have things that we can do now.

So he may not have ended up with the traumatic brain injuries and the intractable pain syndrome if his obsessive-compulsive disorder was properly treated back then?

Absolutely. That was his undoing. It's kind of harmless to see somebody putting their peas in a straight line or compulsive hand washing and that type of thing but the bad part of it is you lose your ability to do rational thinking. That's what got him into trouble. His total lack of following protocol in 1946 is what gave him that terrible crash that put him into intractable pain syndrome and reclusivity.

He had all this engineering genius, but he just made terrible, irrational decisions at times, like flying that airplane when all the best pilots in the country told him, "Don't do it. That plane won't make it." But he wouldn't take advice.

So those are the kinds of things that get people into traumatic brain injuries. Then, when you get traumatic brain injury, you're even more impaired mentally.

Some of the things this guy did were just unbelievable. Crazy things like he only had 30 minutes of gas, but he tried to fly it 40 minutes. They weren't supposed to fly with the wheels up, so he put them up. There's a whole list of things he wasn't supposed to do that he did, and that's not normal mentally. He wasn't just eccentric. He really was mentally impaired. I'm surprised somebody hadn't shot him or [that he hadn’t] done himself in.

His behavior actually got better after he got on his medication for his pain. His codeine and his Valium seemed to control his bad behavior to some extent.

How did people’s opinions of opioids differ back then compared to now?

Back then, Dr. Mason, [one of Hughes’ doctors] told the press one time in about 1947 or so, "Yeah, we give him the codeine because he's in pain and needs them."

That was the end of the discussion. In other words, when I got into this business in the 1970s after Vietnam, we didn't have all this controversy [about prescribing opioids]. The emotionalism, the condemnations of both physicians and patients, the hysteria of opioids, this is new in society. There wasn't near that kind of stigma back in Howard Hughes' day.

Sounds like things were much easier back then.

Much simpler and much better. We did much better pain treatment for many severe cases in the 1970s and 1980s than we do today.

Today, everybody has an opinion and nobody agrees. I'm kind of hoping that when people read about these famous people who all took narcotics for pain that maybe the patients won't feel so bad. Maybe the doctors will also see something.

It's probably Pollyanna-ish thinking, but I would hope the history of these famous people who Americans revere might bring a little tranquility and some common sense to the use of opioids. We're still going to need them. We can't get along without them. We're certainly decreasing use of opioids for good reason. We're getting alternatives for a lot of patients, but they're still going to be needed for some people.

“The Strange Medical Saga of Howard Hughes” is available for purchase on Amazon.com and BN.com. In the future, Tennant plans to release the strange medical sagas of John F. Kennedy, Elvis Presley and Doc Holliday. All proceeds go to the Tennant Foundation, which gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Donna C. Gregory was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook, Twitter and Pinterest. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania.

How Do Opioids and NSAIDs Compare for Chronic Pain?

By Roger Chriss, PNN Columnist

With the ongoing push to reduce opioid prescribing because of the risk of addiction and overdose, claims that non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen are better have become common.

Dr. Andrew Kolodny, founder of Physicians for Responsible Opioid Prescribing (PROP), recently claimed that “NSAIDs are as effective and in some cases more effective than opioids, even for excruciating painful conditions.”

But it’s not that simple. There are few research studies that directly compare opioids and NSAIDs, and little progress has been made since I wrote about this issue in 2017.

The best we can do is to look at Cochrane reviews of opioids and NSAIDs for specific types of pain management. The Cochrane organization provides unbiased, systematic reviews that are widely accepted as gold-standard evidence.

Cochrane on Opioids

A 2010 Cochrane review found that that opioids for long-term non-cancer pain may be useful in select patients and that opioid addiction was rare.

“Many patients discontinue long-term opioid therapy (especially oral opioids) due to adverse events or insufficient pain relief; however, weak evidence suggests that patients who are able to continue opioids long-term experience clinically significant pain relief,” the authors concluded. “Many minor adverse events (like nausea and headache) occurred, but serious adverse events, including iatrogenic opioid addiction, were rare.

More recent Cochrane reviews found that opioids provide some benefit for restless leg syndrome and rheumatoid arthritis, but little for osteoarthritis.  For neuropathic pain, the results are mixed.  

“Short-term studies provide only equivocal evidence regarding the efficacy of opioids in reducing the intensity of neuropathic pain. Intermediate-term studies demonstrated significant efficacy of opioids over placebo,” reviewers found. “Analgesic efficacy of opioids in chronic neuropathic pain is subject to considerable uncertainty.  Reported adverse events of opioids were common but not life-threatening.”

For specific opioids, results vary. Cochrane found limited, low-quality evidence for oxycodone for neuropathy. Findings for tramadol were discouraging for neuropathic pain and osteoarthritis.

But extended release tapentadol (Nucynta) provided better pain relief for musculoskeletal pain than oxycodone and placebo, although “the clinical significance of the results is uncertain.”

Cochrane on NSAIDs

The findings for NSAIDs are similarly mixed and the type of pain matters a lot.

For chronic low back pain, Cochrane found that in about half of clinical trials NSAIDs were more effective than placebo for reducing pain and disability, but “the magnitude of the effects is small, and the level of evidence was low.”

For neuropathic pain in adults, a Cochrane review found “no good evidence to tell us whether or not oral NSAIDs are helpful to treat neuropathic pain conditions.”

For kidney stone pain, Cochrane found that “NSAIDs were more effective than other non‐opioid pain killers including antispasmodics for pain reduction.”

For fibromyalgia, the evidence for NSAIDs is weak, with reviewers concluding that “NSAIDs cannot be regarded as useful for treating fibromyalgia.”

And for chronic non-cancer pain in children and adolescents, Cochrane reports that “we have no evidence to support or refute the use of NSAIDs.”

Of course, what works for an individual cannot necessarily be predicted from a Cochrane review. Clinical decision-making involves a risk/benefit assessment, with consideration for each patient’s specific circumstances and close follow-up to monitor outcomes. Safety is paramount as well, in particular for drugs like opioids that have significant risks.

In sum, it is difficult to make a blanket statement about opioids versus NSAIDs for chronic non-cancer pain. Results vary by specific opioids and type of pain. We need better studies to inform clinical practice and improve patient outcomes.

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. 

Inflammation Cascades Cause Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

The greatest research breakthrough in recent years that will provide much hope for persons with intractable pain syndrome (IPS) has been the discovery of the “inflammatory cascades” inside the central nervous system (CNS). Now that this is known, there are specific measures to take to reduce or halt this process.

Most persons with IPS have two inflammatory cascades, one in the brain and the other in the lower spinal canal. They are called cascades because one area of inflammation can ignite another in a continuous chain reaction and spread.

Excess electric currents enter the brain from a bodily site of damage or diseases. In response to tissue injury, inflammation initially begins around receptors and spreads to other parts of the brain, just like the inflammation that causes cellulitis on the skin.

Inflammation in the lower spinal canal usually starts in a protruding intervertebral disc or due to a puncture, infection or injury to the dura-arachnoid covering of the spinal canal.

Once inflammation starts in either the brain or inside the spinal canal, it may not ever cease or burn-out. It may even silently continue to spread and damage CNS tissue with progressive pain and disability.

How to Control Inflammation

While pain relief is always the first thing on the mind of an afflicted person, measures to control and suppress the inflammatory cascade are essential. Normal anti-inflammatory agents don’t usually enter the brain or spinal canal in adequate amounts to be very helpful. You must use multiple agents that cross the blood brain barrier.

Every person with IPS must be on a daily program that include three measures to control the cascades of CNS inflammation or your condition will likely deteriorate. This can be done through diet, vitamins and supplements that help prevent inflammation; medications that reduce inflammation; and movements that help keep spinal fluid flowing.

Review the three measures listed here with your family and medical practitioners. Select the nutrients, medications and exercises to develop a program that best fits you.

You must continue daily cascade control for as long as you have pain. Opioids and other analgesics, by themselves, do not control the inflammatory cascades. Without a cascade control program, you can expect that your pain relievers will diminish in effectiveness and may totally stop working.

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

Ideology Is Guiding Pain Care, Not Science

By Roger Chriss, PNN Columnist

An overarching question in pain management and the opioid crisis is whether or not prescription opioids have any value in treating chronic non-cancer pain. 

Some say that the answer is a resounding “No.” Studies to date on the effectiveness of opioids are often too small, methodologically weak or too short-term to be convincing. But these same studies are often used to claim lack of efficacy, and for the same reasons they cannot do that.

At present, we don’t know if or how well opioids work for chronic pain. To establish efficacy, we’d need major studies or clinical trials that run for years, using many hundreds or even thousands of patients. Opioids would need to be compared to placebo or other treatments for various forms of chronic non-cancer pain, from inflammatory and autoimmune conditions to neuropathies and genetic disorders.

Such studies have not been done. A U.S. government website that tracks clinical studies lists 685 trials for “opioids and chronic pain,” with several terminated or withdrawn, others just now recruiting, and only a handful completed. Many of these studies look at substance use disorders, tapering or de-prescribing, or are small-scale efforts at comparing two opioids.

There are no large-scale studies of opioids for chronic non-cancer pain getting started or underway at present.

There are over 14,500 studies on “opioids and chronic pain” listed in PubMed, a database maintained by the National Institutes of Health. One of the few that looked at long-term use of opioids is the 2018 SPACE study, which found that opioids were not superior to non-opioid medications over 12 months.

But the SPACE study has important limitations: It only looked at patients with chronic back pain or osteoarthritis of the hip and knee. Researchers also put the opioid tramadol in the non-opioid group and let some patients switch from the non-opioid to the opioid arm in order to achieve good analgesia.

Another study found that only one in five patients benefited from long-term opioid therapy, with young and middle-aged women showing the least improvement in pain and function. But this was a telephone survey that relied on a pain scale to assess outcomes, with no mention of diagnoses and no randomization or placebo control.

Similar studies with more positive outcomes can be found. According to a Cochrane review, the opioid tapentadol (Nucynta) worked better than oxycodone and a placebo in treating chronic musculoskeletal pain. But the clinical significance of this finding is uncertain.

In other words, we don’t have the kinds of studies we need to figure out if opioids work for chronic pain. This means that when people claim there is no good evidence for opioids in long-term pain management, they have a point. But for the same reason, there is no good evidence against opioid efficacy, either.

Of course, there is good evidence about opioid risks. As PNN reported, an Australian study found that people on long-term opioids do sometimes engage in risky behavior such as filling a prescription early. But this study didn’t find major risks of dose escalation, diversion or overdose that are often claimed to be common.

The solution would be to do major trials. But there seems to be little incentive to do this. The opioid crisis and associated ideological debate about drug legalization have combined with lawsuits and public health policy to remove any motivation to find out more about efficacy. The results of such a study could sway outcomes in the ongoing opioid litigation or ignite new lawsuits, or could even cripple advocacy groups on either side of the opioid divide.

There are, arguably, subtle incentives not to pursue high-quality clinical trials on opioids for long-term pain management. Instead, we’re seeing lots of meta-analyses, reviews, and retrospective studies, none of which is particularly convincing because summarizing old studies with known weaknesses generally cannot answer big questions.

For the foreseeable future, we may be stuck with ideology instead of science guiding clinical pain care.

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. 

Rare Disease Spotlight: Cauda Equina Syndrome

By Barby Ingle, PNN Columnist   

The rare disease spotlight this month shines on cauda equina syndrome (CES), a serious neurological disorder that affects a bundle of nerves at the end of the spinal cord called the cauda equina. The condition is relatively rare and affects about 1 in 70,000 people.

Cauda equina syndrome (CES) was first described in the medical literature by Drs. William Mixter and Joseph Barr in 1934, although the earliest documented case happened to a man in the late 1800’s whose cauda equina was damaged during a surgical procedure that left him incontinent.

Nerves in the cauda equina give both motor and sensory function to the legs, bladder, anus and perineum. When damaged, CES can develop quickly or gradually, causing low back pain, numbness or weakness in the lower extremities, pain that radiates down the leg, and loss of bowel or bladder control.

In an acute onset, sensory and motor deficits in the lower body typically develop within 24 hours. Gradual onset can develop progressively and symptoms may come and go over the course of several weeks or months.

A sudden onset of sexual impotence, bladder dysfunction or sensory loss in the saddle region of your legs and buttocks can also be a sign of CES. Imagine sitting on a saddled horse and not being able to feel anything in the body areas that sit on a saddle. This would be a telling sign.  

There are multiple causes of CES, including trauma, herniated discs, spinal stenosis, tumors, infections and inflammatory conditions such as Paget’s disease or ankylosing spondylitis. Medical errors like poorly positioned screws in the spine and spinal taps can trigger CES as well.

When there is an acute onset of CES, it usually requires an emergency surgical procedure. You need fast treatment to prevent lasting damage that causes incontinence or paralysis of the legs.

To diagnose CES, a patient will need an MRI (magnetic resonance imaging). This is the best method of imaging the spinal cord, nerve roots, intervertebral discs, ligaments and soft tissues affected by CES. If you are diagnosed with CES, you should see a neurosurgeon or spinal orthopedic specialist to assess the need for an urgent spinal decompression and other options.  

Short of surgery, what can providers do to help reduce the symptoms of CES? This depends on what caused it to develop. One of the first options is the use of high dose corticosteroids, which can reduce swelling in the spine. If there is a mass or tumor involved, radiation or chemotherapy may be needed after surgery. If the cause is an infection, you will need antibiotics within 2 days of the onset of symptoms

Receiving proper and timely care is critical for CES and can assist in the recovery of bladder and bowel function. This may take years to fully reverse.  

If you have CES or know someone with it, you can find support groups on Facebook here, here and here. The Cauda Equina Foundation and the Cauda Equina Champions Charity are also good resources for CES patients seeking advice and information.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.