Stop Demonizing the ‘Holy Trinity’     

Lynn Kivell Ashcraft, Guest Columnist    

If we are to have any hope of a rational, scientific discussion about the issues involved in both pain management and addiction treatment, we need to end patient shaming and the use of sensational language that has no basis in clinical practice.

First on my list is to stop using the term “Holy Trinity” when referring to the use of multiple medication classes to manage pain. It is a sensational propagandizing use of terminology that has no place in any meaningful clinical discussion.

Holy Trinity was a term coined by law enforcement when discussing the behavior of addicts. The original Holy Trinity – the so-called “Houston Cocktail” -- referred to the simultaneous ingestion of the short acting drugs hydrocodone (Vicodin), alprazolam (Xanax) and carisoprodol (Soma) by addicts. Other combinations of opioids, muscle relaxants and anti-anxiety drugs such as benzodiazepines are also used.

“The cocktail is commonly known on the black market as the ‘holy trinity’ and is particularly sought-after by addicts, but is also particularly dangerous,” is how the DEA describes the drugs in criminal complaints, search warrants and training guides.  

SOURCE: DEA TRAINING GUIDE

Taken together, the three drugs can be risky and cause respiratory depression, overdose and death. But when used under medical supervision, they enable individuals with painful and disabling conditions to improve their quality of life and restore bodily functions.

Holy Trinity was never used originally to refer to any medication combination prescribed by physicians caring for pain patients. But with the advent of the opioid crisis, the term is being used as a scare tactic by law enforcement and even some medical providers to deny patients a combination of medications previously used successfully.

The unintended consequence of this careless usage has been the deaths and needless renewal of pain and disability for patients who were being safely prescribed these medications.  

There is no one-size-fits-all treatment for chronic severe centralized pain. In fact, the current Pain Management and Dosing Guide from the American Pain Society lists opioids plus other central nervous system depressants and valium (a diazepine) as potential treatments for neuropathic pain.

It is well acknowledged that successful treatment often requires polypharmacy regimens tailored to the needs of individual patients to achieve pain relief and provide quality of life. The potential risks of using multiple medications can be reduced by prescribing both long-acting forms of these drugs and by directing patients to take them separately. 

To use the Holy Trinity as an inflammatory term is to demonize certain medications that have been abused by addicts while being used successfully by intractable pain patients. The use of this derogatory term has caused the undeserved transference of the deeply held negative societal bias against “addicts” onto some of the frailest and medically complex patients, many of whom are struggling to achieve some quality of life. 

According to the CDC, about 20 percent of adults in the U.S. have chronic pain and 8 percent have severe “high impact” chronic pain that frequently limits their life or work activities. The 2011 Institute of Medicine report puts the number of Americans with pain at 100 million, which is more than those living with diabetes, heart disease and cancer combined.

The difference between the two reports highlights some of the issues with using and understanding statistics.  However, no matter which report you use, both numbers represent a staggering number of Americans living in pain who deserve effective treatment.

Let’s lose the term Holy Trinity and allow doctors to prescribe whatever medications they deem necessary for the restoration of function and the relief of pain in their patients. Name calling and the use of disrespectful terminology doesn’t solve either the problem of addiction or the problem of pain.

Lynn Kivell Ashcraft is an Analytic Software Consultant and writer who lives in Arizona. Lynn has lived with chronic intractable pain for almost 30 years and works with Dr. Forest Tennant as part of the Arachnoiditis Research and Education Project. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Overdoses Linked to Fake Pain Pills Draw Little Attention

By Pat Anson, PNN Editor

A mysterious lung illness linked to marijuana vaping has drawn nationwide attention this week. The CDC said there were 6 confirmed deaths and 380 cases of the illness, which one doctor warned was “becoming an epidemic.”

Even the White House has gotten involved in the vaping crisis, with President Trump calling for a ban on flavored e-cigarettes. “People are dying with vaping,” Trump said.

Meanwhile, an even more deadly health crisis continues to spread, drawing relatively little attention from the nation’s media and federal officials. Counterfeit blue pills made with illicit fentanyl are killing Americans from coast to coast.

This week, health officials in California’s Santa Clara County announced that 9 fatal overdoses have been linked to counterfeit oxycodone pills since January, including the recent deaths of a 15 and 16-year old.  

Local law enforcement has seized a large number of the blue tablets, which have an “M” stamped on one side and a “30” on the other side. They are virtually indistinguishable from real oxycodone.

“The extent of circulation of these fake pills is unknown; however, they had been consumed by several of the people who died,” Santa Clara Public Health Director Sara Cody, MD, said in a statement. 

“Many opioid pills, which are made to look like real prescription medications, are now made by counterfeiting organizations. These pills are not prescribed, stolen, or resold by or from verified pharmaceutical companies, and there is no connection between their appearance and their ingredients. Many patients may not be aware of the risks of taking a pill that does not come directly from a pharmacy.”  

Mexican Oxy

The overdoses in Santa Clara County are not an isolated situation. Over 700 miles away, the Yakima County Coroner’s Office in Washington State warned that three recent deaths involved fake oxycodone pills with the same distinctive markings. Yakima is used as a major distribution center by Mexican drug cartels.

"Most of the time it comes from Mexico, but we haven't been able to pinpoint exactly which batch it's from and who is actually dealing it," said Casey Schilperoort, a spokesperson for the Yakima County Sheriff's Office.

Known on the street as “Mexican Oxy,” the pills were also found at the scene of four fatal overdoses near San Diego over the summer.  Ports of entry near San Diego are major transit points for counterfeit oxycodone smuggled in from Mexico. The pills are usually transported in vehicles, often by legal U.S. residents acting as couriers. They sell on the street for $9 to $30 each and have spread across the country.

In February, New York City police announced the seizure of 20,000 fake oxycodone pills. Overdose deaths in New York City are at record levels and fentanyl is involved in over half of them. Fentanyl is a synthetic opioid 50 to 100 times more potent than morphine.

This week federal prosecutors in Cleveland indicted ten people for trafficking in fake oxycodone and other illegal drugs. The leader of the drug ring, Jose Lozano-Leon, allegedly directed operations using a cell phone smuggled into his Ohio prison cell.

Prosecutors say Lozano spoke frequently with the co-defendants and others to arrange drug shipments from Mexico to northeast Ohio. The ring allegedly specialized in counterfeit oxycodone.

"In Ohio and other parts of the country, we are seeing an increase in these blue pills that at first glance appear to be legitimately produced oxycodone, but in fact are laced with fentanyl,” said DEA Special Agent in Charge Keith Martin.

Ironically, the indictments were filed in the same federal courthouse where a major lawsuit against opioid manufacturers and distributors is expected to get underway next month.  

Chronic Pain Accelerates Dementia

By Dr. Lynn Webster, PNN Columnist

In 2017, JAMA Internal Medicine published a study that found older people with chronic pain experience faster declines in memory and are more likely to develop dementia.  While prior research had shown a link between chronic pain and brain damage, this was one of the first studies to specifically suggest that chronic pain can cause dementia.

The authors reported that people aged 60 and over with persistent pain experienced a 9.2% more rapid decline in memory score when compared to people of the same age without chronic pain. This means that people with chronic pain may experience more difficulty in managing their finances, medications and social connections.

Dementia is a chronic condition of the brain that involves memory, personality and judgment. It is not a disease; it is a symptom of one or more diseases.

There are many types of dementia. Alzheimer’s disease is considered to be the most common.

Dementia usually worsens over time if the underlying disease remains static or progresses, as is the case with many chronic pain conditions.

There are an estimated 20 million Americans with high impact (the most severe) chronic pain who may be experiencing accelerated decline in cognition due to their pain. The amount of dementia appears to be associated with the severity and duration of chronic pain. Undertreated or untreated chronic pain may accelerate dementia.

Chronic pain affects an even larger percentage of elderly adults (one in three) than the general population. Since the prevalence of chronic pain increases with age, the probability of experiencing dementia increases as well. However, the reasons for that go beyond aging itself.

Seniors are more likely to take multiple medications that can contribute to mental confusion. On average, elderly people take five or more prescriptions. They may also use over-the-counter medications, which adds to potential drug-associated mental compromise.

Opioids, in particular, have been implicated in cognitive impairment. However, a study published in 2016 suggests there is no difference in cognitive decline between people on opioids and those on nonsteroidal anti-inflammatory drugs. The study's implication is that pain, not opioids, leads to cognitive impairment.

Brain Fog

Chronic pain appears to affect the function and structure of the hippocampus. This is the region of the brain that involves learning, memory, and emotional processing.

One explanation for the mental decline associated with chronic pain is that various areas of the brain compete for attention. Attentional impairment compromises memory by diverting attention to the areas of the brain processing pain. In effect, the brain is multi-tasking and favoring the processing of pain over cognition. This may, in part, explain the clinical phrase “brain fog.”

The Australian Broadcasting Company's "All in the Mind" website explains that pain damages the brain in several ways, including a change in the size of the thalamus and a decrease in the amount of a neurotransmitter (gamma-aminobutyric acid) the brain produces. In other words, chronic pain changes the brain structurally and functionally.

The prefrontal cortex is the part of the brain responsible for executive functions, such as cognition, social behavior, personality, and decision-making. It is also the part of the brain that modulates pain.

According to "All in the Mind," some researchers believe that chronic pain decreases the volume of the prefrontal cortex. Over time, brains damaged by pain lose the ability to handle pain — along with some of the personality attributes that make us who we are.

Brain Damage Can Be Reversed

The good news is that the brain damage caused by chronic pain can be reversed, at least to some extent. Unfortunately, the elderly are less likely to recover from dementia caused by chronic pain as compared with younger patients.

If pain is adequately treated, the brain may be able to regain its ability to function normally. A 2009 study of patients with chronic pain due to hip osteoarthritis showed reversal of brain changes when their pain was adequately treated. 

People who don’t have their acute pain managed are more likely to develop chronic pain. It is postulated that the changes in the brain that occur with chronic pain begin with the onset of acute pain. There is also some evidence that an individual’s genes may influence who is at greatest risk for developing brain damage from chronic pain and who is least likely to recover from it. 

Many people have criticized the concept of assessing pain as the 5th vital sign, and have called it a contributing factor for the opioid crisis. As I have said, pain may not be a vital sign, but it is vital that we assess it. Asking patients about their pain is critical to providing interventions that can mitigate the consequences of undertreated pain, including dementia. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and 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 him on Twitter: @LynnRWebsterMD. 

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

One in Four Adults in England Take Addictive Meds

By Pat Anson, PNN Editor

Nearly 12 million people – about one in four adults in England -- are taking addictive prescription drugs to treat depression, anxiety, insomnia or chronic pain, according to a new review by Public Health England (PHE).

The review takes a cautionary view on the use of five drug classes – opioids, antidepressants, benzodiazepines, gabapentinoids, and so-called “z-drugs” such as zolpidem, zopiclone and zaleplon.

“The medicines we looked at help to make millions of people every year feel better and recover from their illness. Doctors can prescribe them because there is good evidence that they work, but they do have some risks,” the PHE report found.

Benzodiazepines, z-drugs, opioids and gabapentinoids are associated with dependence and withdrawal, while there’s a risk of withdrawal with antidepressants. When the drugs are taken in combination or in high doses, there is also risk of respiratory depression and overdose.  

About half the patients prescribed the drugs in England had been taking them for at least a year — a sign of dependence. But the report cautions doctors not to abruptly discontinue the drugs and to taper them gradually, if at all.

“There is a view that a sub-population of chronic pain patients can be prescribed long-term opioids at relatively stable doses so that their analgesia and functioning can be maintained with good adherence and tolerable side-effects,” the report found.

“We do not want to put anyone off safely using medicines that could help them. Stopping or limiting the use of medicines could also cause harm, including increasing the risk of suicide or making people try to get medicines or illegal alternatives from less safe sources, such as illegal websites or drug dealers.”

Increasing Use of Antidepressants and Gabapentinoids

Antidepressants were prescribed to about 7.3 million people in England or 17% of the adult population. Opioids were prescribed to 5.6 million patients, followed by gabapentinoids (1.5 million), benzodiazepines (1.4 million) and z-drugs (1 million). Prescriptions for opioids, benzodiazepines and z-drugs are dropping, while the use of antidepressants and gabapentinoids is growing. 

Gabapentinoids such as pregabalin (Lyrica) and gabapentin (Neurontin) were originally developed to treat epilepsy, but the drugs are increasingly prescribed in the UK to treat neuropathy and other types of chronic pain. PHE researchers found only marginal evidence that they are effective for pain and alarming signs that they are being misused. 

“Gabapentinoids have come to be used for a wider range of indications than is supported by the evidence or their licensing, and they have sometimes been prescribed in place of opioids or benzodiazepines in the likely-mistaken belief that they are less liable to misuse or dependence, and lack of awareness of the withdrawal problems that can arise when prescribing is stopped,” the report said. 

Prescriptions for opioids and gabapentinoids were 1.6 times higher in parts of England with more poverty. People in poor areas are also more likely to be prescribed medicines for longer periods. Prescription rates for women are about 1.5 times higher than for men. Prescription rates also increased with age.

DEA Proposes More Cuts in Rx Opioids

By Pat Anson, PNN Editor

For the fourth consecutive year, the U.S. Drug Enforcement Administration is proposing steep cuts in the supply of hydrocodone, oxycodone and three other opioid painkillers classified as Schedule II controlled substances.

In a notice published today in the Federal Register, the DEA proposes to reduce production quotas for hydrocodone by 19 percent and oxycodone by 9 percent in 2020. The supply of hydromorphone, oxymorphone, and fentanyl would also be cut.

“The aggregate production quota set by DEA each calendar year ensures that patients have the medicines they need while also reducing excess production of controlled prescription drugs that can be diverted and misused,” acting DEA Administrator Uttam Dhillon said in a statement.

“DEA takes seriously its obligations to both protect the public from illicit drug trafficking and ensure adequate supplies to meet the legitimate needs of patients and researchers for these substances.”

In setting annual production quotas for controlled substances, DEA considers various factors such as medical need, estimates of retail consumption based on prescriptions, and forecasts from opioid manufacturers. Added to the mix this year is diversion.

The five opioids being cut are subject to special scrutiny under the Substance Use-Disorder Prevention that Promotes Opioid Recovery and Treatment for Patients and Communities Act, known as the SUPPORT Act, which was signed into law by President Trump on October 24, 2018. The law requires DEA to estimate the amount of diversion of the five opioids and “make appropriate quota reductions.”

The agency estimated that 57 kilograms – about 125 pounds – of oxycodone were diverted or stolen in 2018, along with 24 kilograms (53 pounds) of hydrocodone. There was diversion of relatively small amounts of fentanyl, hydromorphone and oxymorphone last year.   

Cuts Began in 2016

The DEA first began cutting the supply of opioids in 2016 during the Obama administration and the trend has accelerated under President Trump, who pledged to reduce the supply of opioids by a third by 2021.

If approved, the 2020 production quotas would amount to a 60 percent decrease in the supply of hydrocodone since 2016 and a 48 percent cut in the supply of oxycodone.

While overdoses involving prescription opioids have been declining, they’ve been offset by a growing number of deaths attributed to illicit fentanyl, heroin and other street drugs. “Mexican Oxy” – counterfeit oxycodone pills laced with fentanyl – are being trafficked throughout the United States and are blamed for overdoses from New York City to San Diego.

In addition to the five opioids, the DEA is setting production quotas on more than 250 Schedule I and II controlled substances. The agency is proposing to increase the amount of marijuana that can be produced for research by almost a third, from 2,450 kilograms in 2019 to 3,200 kilograms -- almost triple what it was in 2018. The increase reflects growing interest in marijuana research.

Public comments on the DEA proposal will be accepted until October 10. To make a comment online, click here. The agency will publish another notice later in the year on its final decision and begin informing drug manufacturers of their quota allotment.

Praying for a Miracle

By Stephanie King, Guest Columnist

Up until May of 2010, everything was pretty easy going as far as my health was concerned. I was a happily married 22-year old and mother of a sweet one-year old boy. Then one fateful afternoon all of that changed.

There was a bad storm that day but we had to pay bills. My family and I ended up hydroplaning off the road and crashing into trees.

Luckily, our son was unharmed and my husband, while it was bad, suffered nothing worse than a broken leg.

I had the worst of the injuries and needed surgery. I broke my right foot in three places and my back in five. One of those breaks was a compression burst fracture, which means that my vertebrae basically exploded from pressure. 

Unfortunately, I also developed MRSA, a severe and dangerous bacterial infection. This meant packing the open, oozing wounds every day. Instead of getting better, the infection spread through my back and within a couple of months turned into sepsis. Two more surgeries and six months later, I was finally infection free.

A few years later, my pain was increasing due to degenerative disc disease and arthropathy, so my pain specialist started pushing epidural steroid injections. I was already on fentanyl and MS Contin, so I figured I would give it a shot. This would be the biggest mistake of my life.

I ended up having about ten injections. The last one caused extreme levels of pain and my body felt strange that night. I refused to get any more after that. 

Not long afterwards, I began developing neurological pain that I wasn't used to. Sometimes it felt like warm water running down my legs. Sometimes it was stabbing and biting sensations. Sometimes it felt like my bones were snapping. I didn't make the connection between the epidural and the nerve pain. I assumed it was a pinched nerve, because my back was so messed up. 

STEPHANIE KING

Then in the fall of 2016, my inner calves began to go numb. The numbness rapidly spread up my legs and into my groin. My GP admitted me into the hospital and I had an MRI done.

That day I heard the words I will never forget, the words that changed my life forever: Adhesive Arachnoiditis.

It was explained to me that this is a disease where scar tissue is engulfing spinal nerves, blocking the flow of spinal cord fluid because of inflammation of the arachnoid lining around the nerves.

The more I learned about Arachnoiditis, the more I realized I was doomed to a lifetime of unrelenting pain, a level of pain some doctors have compared to that of bone cancer. I learned of the possibility of paralysis. I learned how there is no cure, just medication to try to manage the disease symptoms and slow down its spread.

I was devastated but kept pushing on, ignoring the pain as much as possible.

Just over a year later, I learned something else. My birth control had failed. I was pregnant with our daughter. My pain specialist immediately dropped me. My obstetrician panicked and tried to get me in with another pain management doctor due to fear of a miscarriage.

I kept hearing how no one would see someone who was pregnant and not already an established patient at their practice. I was referred to a neurologist, but he told my doctor that there was nothing that he could give me that would be safe during pregnancy.

During my pregnancy, the Arachnoiditis symptoms increased tenfold. The burning in my feet and hands became unbearable. I'm one of the "lucky" Arachnoiditis patients who has scar tissue far enough up their spine to effect my arms and hands as well. I began jerking uncontrollably and developed tremors. I spent most of my pregnancy crying and screaming.

We have a beautiful daughter now! She is so sweet and smart! Unfortunately, my symptoms never subsided. I still don't have a pain management doctor. No pain specialist will see me.

I fear I was red flagged for doctor shopping, even though it was just my obstetrician trying to get me treatment. I have finally started seeing a neurologist but until he has reviewed all of my MRIs, no treatment will be given. I won't see him again for another month.

I live in never-ending pain. I rely on family a lot to help care for my children while my husband works. I have come to realize I have no good options at this point. I can continue on in pain and being a total burden to my family, just becoming more burdensome over time.

I could turn to marijuana but it is illegal in my state. My children could be taken away and I could go to prison. I could commit suicide but that would scar my children and further hurt the rest of my family. I am stuck.   

There are times I pray for death. I pray for the body I once had. I pray I could be the mother and wife I once was. I pray for anything to make it stop, even for just a little while. I pray for a miracle.

Stephanie King lives in Alabama.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org. 

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Feds Warn CBD Marketers Again

By Pat Anson, PNN Editor

The Federal Trade Commission (FTC) has warned three companies that sell cannabidiol (CBD) oils, tinctures, edibles and other products to stop making claims that CBD can be used to treat pain and other chronic illnesses.

In letters to the companies, which the FTC is not identifying, the agency warned that it is illegal to advertise that a product can prevent, treat or cure illnesses without scientific evidence to support such claims.

One company’s website claims CBD “works like magic” to relieve “even the most agonizing pain.” Another company advertises CBD as a “miracle pain remedy” for both acute and chronic pain, including pain from cancer treatment and arthritis.

The FTC said the third company’s website promotes CBD gummies as highly effective at treating “the root cause of most major degenerative diseases, including arthritis, heart disease, fibromyalgia, cancer, asthma, and a wide spectrum of autoimmune disorders.” The company also claims its CBD creams and oils can relieve arthritis and fibromyalgia pain.

“In the letters, the FTC urges the companies to review all claims made for their products, including consumer testimonials, to ensure they are supported by competent and reliable scientific evidence,” the agency said in a statement.

The letters also warn that selling CBD products without substantiation could violate the FTC Act and may result in legal action. The companies were given 15 days to respond.

In March 2019, the FTC and Food and Drug Administration sent similar warning letters to three companies -- Nutra Pure, PotNetwork Holdings, and Advanced Spine and Pain — for making false and unsubstantiated health claims about a variety of CBD products.

Nutra Pure, which makes a line of hemp oil, now has a lengthy disclaimer on its website stating that its products “have not been evaluated” by the FDA and that they “are not intended to diagnose, prevent, treat, or cure any disease.”

But when we posed as a customer in an online chat with “Kristen,” a NutraPure representative, we were assured that hemp oil can treat pain.  

Customer: “Do your products help treat pain?”

Kristen: “There are numerous studies showing CBD has the ability to provide therapeutic benefits in the treatment of various conditions, including chronic pain, arthritis, anxiety/depression, nausea, epilepsy, fibromyalgia, glaucoma and many other ailments.”

Customer: “Which one of your products helps treat fibromyalgia?”

Kristen: “We recommend starting with our 300 or 600 mg bottle.”

Customer: “Will that help joint pain?”

Kristen: “They are like an all in one type product.”

Customer: “What does that mean?”

Kristen: “One product helps with all types of conditions.”

Customer: “Including pain?”

Kristen: “Yes.”

CBD is a non-psychoactive chemical compound derived from the cannabis plant. Much of it comes from hemp – a less potent strain of marijuana – that was legalized under the 2018 Farm Bill. There are literally thousands of CBD products on the market being sold online and over-the-counter without a prescription, often with dubious claims about their health benefits.

FDA and FTC enforcement actions against CBD marketers are sporadic and have usually only targeted small companies. But an FDA warning letter in July to Curaleaf, a Massachusetts company that sells CBD products nationwide, had an immediate impact on one large retailer. CVS Pharmacy pulled most Curaleaf products from its stores.

Stem Cell Therapy for Lower Back Pain Moves Closer

By A. Rahman Ford, PNN Columnist

There’s good news on the horizon for those who suffer from lower back pain due to disc degeneration.

Mesoblast, an Australian biotech company, has partnered with Grunenthal, a large German pharmaceutical company, to commercialize an investigational stem cell product called MPC-06-ID -- a stem cell formula comprised of mesenchymal cells derived from the bone marrow of healthy volunteers. Mesoblast could receive up to $1 billion from Grunenthal if the treatment is successful.

MPC-06-ID is currently in a Phase III placebo-controlled trial in the U.S. In the trial, millions of stem cells grown in a laboratory are injected into the patients’ degenerated discs with the goal of reducing inflammation and causing the discs to regenerate.

In previous trials, 47% of those who received the injection had a significant reduction in pain 12 months later. The results persisted for three years.

The estimated study completion date for the Phase III trial is March 2021. So, unfortunately, there is a bit of a wait. But Mesoblast is hopeful the study findings will result in FDA approval.

The company is also studying a stem cell product for chronic lower back pain. More on Mesoblast’s products and how they treat back pain can be found here.

What does this mean? First and foremost, it’s great news for people suffering from back pain. This is a population that is woefully underserved by conventional medicine. Limited options include analgesics like opioids, which are increasingly difficult to obtain, and spinal surgery that is costly, often ineffective and can even exacerbate the problem. I have previously written about these issues here.

Clinicians around the country have been using stem cell therapy (SCT) for years to treat back pain and even difficult spinal conditions like arachnoiditis. However, these clinics have been operating under the scythe of potential persecution for using products not approved by the FDA.

Not only has this placed them squarely in the crosshairs of regulatory authorities which issue warning letters and file lawsuits, but it has also subjected them to internet censorship by Google and others.

The Mesoblast-Grunenthal partnership is indicative of the fact that major corporate investment in SCT is increasing -- and that can be a great thing for consumer choice. More and more biotech investors are recognizing that SCT is the future of medicine, especially when it comes to treating conditions caused by chronic inflammation. Forbes reports that the market size of the SCT industry was $8.65 billion in 2018, with a projected annual growth rate of 8.8%.

We saw recent evidence of this trend with Bayer’s acquisition of Bluerock Therapeutics’ and its stem cell treatments for Parkinson’s disease and other chronic illnesses. And Boston-based Vertex Pharmaceuticals recently acquired Semma Therapeutics for $950 million in a bet that its SCT products could cure type 1 diabetes.

Why is the SCT market so robust? Transparency Market Research attributes it to a “rise in consumer awareness.” In other words, people are desperate for relief and looking for new treatments. Suffice it to say, any additional treatment option for those suffering from back pain is more than welcome.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The information in this column is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Fibromyalgia Researchers, It’s Time to Stop Watching the Flowers Grow!

By Donna Gregory Burch

As a fibromyalgia warrior and blogger, I read a lot of articles about new research findings. I continue to be amazed by how much time and money are wasted by researching the obvious or studying the same treatments over and over again.

After all, how many times do we need to prove meditation can reduce fibromyalgia pain? Didn’t we figure that out years ago?

I really thought I’d seen it all until an article entitled, “The Power of Flowers May Ease Fibromyalgia Symptoms,” showed up in my inbox last month.

As I read it, I literally said out loud: “Are you kidding me?”

In case you haven’t read the article, it summarizes a recent Israeli study in which 61 women with fibromyalgia completed a 12-week flower design course presented by a trained florist. At the end of the course, Tel-Aviv University researchers reported “quite amazing” improvements in the women’s fibromyalgia symptoms.

Yep, you read that right: The researchers claim arranging a few daisies and baby’s breath in a vase actually improves fibromyalgia.

Now, I don’t doubt for a minute that flower arranging is relaxing and could have a calming effect on the central nervous system. That, in turn, could lead to a reduction in pain and other fibro symptoms.

But so could watching butterflies or painting rocks.

While I think it’s wonderful researchers are looking at non-pharmaceutical treatments for fibromyalgia, studies like this completely invalidate the seriousness of our condition. These types of studies make it seem like almost anything will fix fibro, and that is just not reality.

Because of the stigma of fibromyalgia, we already struggle to prove to our doctors and loved ones that we’re really sick. What do you think the average person is going to think when they read flower arranging helps fibromyalgia? While I’m sure the researchers had good intentions, this study makes a complete mockery and joke out of an extremely painful, life-sucking condition.

In my mind, I think back to all of those doctors who tried to give me anti-depressants and anti-anxiety medications when I complained about unexplained pain, fatigue, bladder urgency, neuropathy and a long list of other symptoms. The message was clear: “It’s all in your head. You’re just a stressed out, middle-aged woman who needs to chill out.”

What happens when these same doctors read the Israeli study? I can envision them now referring their patients to the nearest community college for classes on cupcake baking and basket-weaving. As if we weren’t frustrated enough with the conventional medical system!

The truth is we don’t need more BS fibromyalgia studies like this one. We need researchers to get serious! We need them to take a deep dive into the minds and bodies of fibromyalgia patients and figure out what causes us to feel like a three-day-old warmed over microwave dinner.

We need real solutions – treatments that get to the root cause of our illness – not a new hobby!

Donna Gregory Burch lives with fibromyalgia and chronic Lyme disease. Donna covers news, treatments, research and practical tips for living with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter.

Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

Kolodny Clarifies His Conflicts of Interest

By Pat Anson, PNN Editor

Dr. Andrew Kolodny has revised his conflict of interest statements for two articles he co-authored in the Journal of the American Medical Association (JAMA) to include his work in malpractice lawsuits involving opioid medication.

Kolodny, the founder and Executive Director of Physicians for Responsible Opioid Prescribing (PROP), is a longtime critic of opioid prescribing. He recently testified as the “star witness” for Oklahoma in its opioid negligence lawsuit against Johnson & Johnson, a case the state won with a $572 million judgement against J&J.

“I am writing to provide additional information to clarify conflict of interest disclosures in 2 articles I published in JAMA in 2017 and 2018.  During this time, I received compensation for work as an expert in malpractice litigation involving opioid prescribing,” Kolodny wrote in a Sept. 4 letter to JAMA’s editors.

“When the articles were first published, I did not believe this work could be perceived as a potential conflict of interest. My view has since changed. In the spirit of full transparency, I am requesting a correction to my disclosure statements.”

The two JAMA articles in question, which were co-authored by former CDC director Thomas Frieden, MD, both dealt with the opioid crisis and the federal policy response to it.

JAMA disclosure policy is very clear and requires authors to list “all relevant financial interests, activities, relationships and affiliations,” including payments for employment, consultancies and expert testimony.

During the Oklahoma trial, Kolodny admitted under questioning by J&J lawyers that he was being paid $725 an hour by Nix Patterson & Roach, one of three law firms hired by Oklahoma to handle the case against J&J. Kolodny anticipated being paid up to $500,000 by the end the Oklahoma trial.

“I don’t think it should be a secret that I’m being compensated,” he said.  

Kolodny also acknowledged working for the law firm of Cohen Milstein Sellers & Toll in a similar capacity, also for $725 an hour. Cohen Milstein is heavily involved in opioid litigation in New Jersey, Indiana, Vermont, California and Illinois. 

Kolodny’s work in opioid litigation was disclosed in the April 2018 JAMA article.

DR. ANDREW KOLODNY

His revised disclosure statement for that article is vague, stating that he worked as “a medical expert for states and counties that have filed suits against opioid manufacturers and as an expert witness in malpractice cases involving opioid prescribing.” It does not identify which states, counties and law firms he worked for or what companies were being sued. 

JAMA policy calls for “complete disclosure of all potential conflicts of interest” covering a three-year period prior to an article being submitted. If an author received funding from the pharmaceutical industry, for example, he or she would be expected to identify the company involved.   

“It is encouraging that Dr. Kolodny has recognized that his very profitable work supporting plaintiffs in opioid lawsuits might constitute a conflict of interest when he writes about opioid policy and clinical practice,” said Bob Twillman, PhD, a healthcare policy consultant and former Executive Director of the Academy of Pain Management. “Of course, these aren't the only two articles Dr. Kolodny has co-authored, and he has done numerous presentations at professional meetings as well, so I wonder if he will seek to correct all the rest of those relevant disclosure statements.

“I think it's also interesting that, when I disclose my conflict, I am always required to specifically name the entity involved, yet Dr. Kolodny names neither the jurisdictions nor the law firms for which he was working. It seems a little like a double standard to me, and I wonder how the editorial boards of the relevant journals feel about that.”

In March 2017, Kolodny co-authored a research letter in JAMA Internal Medicine on a study he designed that looked into funding that patient advocacy groups and professional organizations received from opioid manufacturers. Many of those organizations publicly opposed the CDC’s controversial opioid prescribing guideline, which Kolodny and other PROP members helped draft.

“The CDC did not prompt or require organizations to disclose their financial associations as part of their comments. Disclosure, however, is one means of managing conflicts of interest,” Kolodny and his co-authors wrote. “Our findings demonstrate that greater transparency is required about the financial relationships between opioid manufacturers and patient and professional groups.”

Kolodny’s disclosure statement for the 2017 article states that he was a member of PROP and Chief Medical Officer for the addiction treatment chain Phoenix House (which he has since left). It makes no mention of his work in opioid litigation or malpractice lawsuits, which appear to have begun in 2012 when he started working with Linda Singer, then from the law firm of Cohen Milstein.

Lucrative Sideline

Kolodny is not the only critic of opioid prescribing to develop a lucrative sideline as a medical expert or paid witness. Dr. Adriane Fugh-Berman, Director of PharmedOUT, a program at Georgetown University that seeks to expose deceptive healthcare marketing practices, has also been paid handsomely for her testimony.

In August, Fugh-Berman testified in California that she was paid $500 an hour for her work in a pelvic mesh liability trial of Johnson & Johnson. She received about $120,000 for her work on the case, according to Northern California Record.

Fugh-Berman has written several op/eds claiming that “industry-funded attacks” on the CDC guideline by physician and patient advocacy groups were part of a “coordinated attempt by opioid manufacturers to use third parties to undermine, discredit, and smear the guideline.”

Fugh-Berman discloses on PharmedOUT’s website that she is a paid expert witness, but she won’t say who funds her organization.

“(We) are funded primarily by individual donations, mostly small donations but we have several major donors. We do not provide the names of our individual donors,” she said in an email to PNN.  

Dr. Timothy Munzing, a Kaiser Permanente family practice physician in California, has also stoutly defended the CDC guideline and warned against excessive opioid prescribing.

“Most prescribing physicians feeding the opioid epidemic are well meaning, naïve, or just too busy to recognize the dangers,” he wrote in a physician guide for opioid prescribing published by Kaiser Permanente.

Over the past decade, Munzing has established a profitable career as an expert witness for the Medical Board of California, DEA, FBI and DOJ, working mostly on cases that involve doctors flagged for overprescribing opioids.

According to GovTribe.com, which tracks payments to federal contractors, Munzing has been awarded nearly $1.3 million in DOJ contracts since 2017 and is currently working on over two dozen DEA investigations.

After he left Phoenix House, Kolodny became the co-director of an opioid research program at Brandeis University that is funded with over $8.5 million federal grants, according to GovTribe.com.

There’s More Concern About Animals Suffering Than People

By Debbie Westerman, Guest Columnist

I have Complex Regional Pain Syndrome, as well four herniated discs in my lower back. Because of the “opioid crisis,” I was taken off the only medication that ever helped: fentanyl.

I see a reputable doctor and he is very sympathetic. But as he put it, doctors are no longer just being sued, they are being threatened with jail time.

In addition to my pain and fear, I felt so sorry for him. We’ve tried everything: nerve blocks, injections and I have two spinal cord stimulators.

I was weaned off the fentanyl and only have hydrocodone that I take for breakthrough pain. 

I’ve done everything I’m supposed to. I have an appointment with my doctor every 28 days, along with random drug tests to make sure I’m only taking what he’s prescribing.

My insurance doesn’t pay for the random drug tests. I have to pay $150 each time. I don’t abuse my meds. All of my doctors know what I’m taking. I don’t get any type of pain meds from anyone except my pain management doctor.

DEBBIE WESTERMAN

I have to go to work every day. I’m single and have to take care of myself. I use a walker to get around. It’s been months since I have slept more than 2 to 4 hours a night. I’m constantly turning over, putting the pillow under my legs or between my legs, and the rest of the night I’m in and out of bed trying to walk because the pain is so bad.

What really gets me is that if I were an animal and suffering this bad with this much pain, I would be humanely put down. As a society we’ve become more concerned about our animals than we are about people who are suffering unspeakable, unexplainable amounts of pain.

I’ve never wished my pain on anyone. But I really wish that there was some way that these people who think they know what’s best for me could spend 6 hours in my shoes. I guarantee they would be screaming a different tune.

Debbie Westerman lives in Texas.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org. 

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Visible Few Pain Patients

By Dr. Lynn Webster, PNN Columnist

I receive several emails a week from people who ask for help because their treatment options have been limited or eliminated. They are in terrible pain, and they don’t know what to do.

One such person, Sharon Berenfeld, MD, recently shared an experience she had visiting her doctor.

“Dr. Webster, I came across a publication of yours. It struck a nerve with me. My pain is intractable. I have tried everything,” she wrote. “Before the exam room door even closed, [my doctor] announced to me, ‘If you think I’m just here to refill your pills, you can leave now.'

"I left in tears. I was being judged and punished for having a complication from cancer treatment. I completely understand the opioid crisis. But I feel impotent to do anything."

Who Are the Visible Few?

Earlier this year, Fox News' three-part series, Treating America's Pain: Unintended Victims of the Opioid Crackdown, showed the terrifying circumstances of people in pain and doctors under siege. One individual’s decision to commit suicide as a result of the crackdown on opioid prescribing embodies the struggles of people in pain and their providers' inability to meet their needs.

The visible few are the small number of people whose stories have been heard by journalists, media consumers and government officials. Their stories reflect millions of Americans suffering from chronic pain who live in the shadows and are invisible to most of us. 

The needs of people in pain and the challenges providers face when treating them have been overshadowed by the government's attempts to deal with the opioid crisis. The well-intentioned CDC Guideline for Prescribing Opioids for Chronic Pain has affected 20 million Americans with severe disabling pain.

It also is having consequences for everyone else in the healthcare system. Prescription opioids have been demonized and blamed for our current drug crisis.

Unintended Consequences

The CDC guideline was supposed to be voluntary. However, in practice, the guideline has been treated as a policy with the strength of a law, and it has had severe unintended consequences. Many people are worse off in its wake. Here is a summary of the most substantial effects of the guideline.

  • Providers feel pressured to reduce the amount of opioids that they prescribe, regardless of their patients' individual needs. About 70% of physicians have reduced their opioid prescribing or stopped it completely.

  • Insurance companies set prescription limits based on the guideline. In some cases, they override physicians' recommendations. That means insurers, rather than doctors, are making decisions about how to treat pain.

  • Pharmacy chains are also limiting the amount of opioids they dispense, based on the guideline rather than on doctors' prescriptions..

  • The Centers for Medicare & Medicaid Services and the U.S. Department of Health and Human Services have set dosage limits. Providers advocating for patients who need higher amounts must navigate a complicated appeals process.

  • State attorneys general have used the guideline to evaluate whether a doctor is prescribing for a legitimate medical purpose. Deviation from the guideline has been used to accuse doctors of criminal conduct.

  • In a desperate search for pain relief, some patients have turned to street drugs.

Where We Are Now

The CDC guideline has left a trail of misunderstanding in its path. Its authors acknowledged misapplication of the guideline in the New England Journal of Medicine, emphasizing that their intention was to provide guidance rather than to establish a mandate.

"Difficulties faced by clinicians in prescribing opioids safely and effectively, growing awareness of opioid-associated risks, and a public health imperative to address opioid overdose underscored the need for the guidance,” they wrote.

In a separate article in the JAMA Network, the guideline's authors said, “The number of people experiencing chronic pain is substantial, with U.S. prevalence estimated at 11.2% of the adult population. Patients should receive appropriate pain treatment based on careful considerations of the benefits and risks of treatment options.”

There are other signs of recognition that the guideline has been misinterpreted. For example, CDC Director Robert Redfield, MD, wrote in a letter to Health Professionals for Patients in Pain (HP3), “The CDC is working diligently to evaluate the impact of the guideline and clarify its recommendations to reduce unintended harm.”

The American Medical Association's House of Delegates passed a series of resolutions on the guideline at an interim meeting in November 2018.

“Physicians should not be subject to professional discipline, loss of board certification, loss of clinical privileges, criminal prosecution, civil liability, or other penalties or practice limitations solely for prescribing opioids at a quantitative level above the morphine milligram level thresholds found in the CDC guidelines for prescribing opioids,” the AMA delegates said.

There is also some light being shined on the issue in a report by The Pain Management Best Practices Inter-Agency Task Force.

“There is no one-size-fits-all approach when treating and managing patients with painful conditions. Individuals who live with pain are suffering and need compassionate, individualized and effective approaches to improving pain and clinical outcomes. This is a roadmap that is desperately needed to treat our nation’s pain crisis,” said Vanila Singh, MD, task force chair and chief medical officer of the HHS Office of the Assistant Secretary for Health.

As the opioid odyssey continues, there are signs that the visible few are beginning to be heard. This is an important step to helping the invisible millions with chronic pain receive the care they deserve.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and 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 him on Twitter: @LynnRWebsterMD.

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Winning My Disability Case

By Mia Maysack, PNN Columnist

Never had I ever sent a thank you note to a judicial official. Not until I learned, after a four-year long process, that my disability case has been approved.  

So I write this teary-eyed, realizing I can now look into getting an oxygen tank for my cluster headaches, as the ability to obtain one through regular insurance was denied multiple times. I can also implement regular massages into my pain management plan, which might sound luxurious but for me is more a matter of physical functionality.

This decision will give me bits and pieces of my life back. The money will be extraordinarily helpful, a lifesaver really.   

I have chosen to no longer feel anything negative about deciding to pursue my case. Perhaps I don't deserve it as much as the next person or maybe I am too young or able bodied at times to even have filed. 

I pursued my claim only as a last resort, holding onto my identity as a worker and employee for dear life — and for far longer than what was in my best interest.

There's no question that part of what heightened my ailments is the fact that I pushed myself too far for a very long time. But having already been so used to daily head pain, I kept my head up by remaining busy and distracted on other things. That’s how I survived.

I also attempted countless career paths to accommodate my illnesses, including but not limited to working part-time, shortening shifts, changing job titles and even accepting positions I was overqualified for because being a part of the workforce has always been a value of mine.  

I've been fired, had hours cut to the point of being forced to quit, experienced pain induced panic attacks and frequently needed to leave work -- unfortunately not with fair warning or adequate notice to my employer. This resulted in judgement and discrimination, despite never being offered accommodations. Nor were there efforts to follow the detailed instructions of my care team by anyone other than me.

So it made the most sense to represent myself at my disability hearing,  as I am my own best expert.  

Applying for disability is extremely strenuous, tiresome and at times very frustrating. Between jumping through the insurance hoops as they try their best to justify not covering what is needed, maintaining numerous appointments, and balancing all the paperwork on top of being chronically ill and in pain. It is no exaggeration to say the disability process is a full-time job.   

Then there's the potential for added hurt when met with the assumption you could just be lazy, exaggerating or are perhaps flat out lying, because it's undeniable that the system has indeed been used and abused. 

To finally have been granted an opportunity for a face-to-face in-person hearing was a gift. It provided the opportunity for me to make my case real. I felt empowered to fully exercise my rights.

I’m also thankful to have crossed paths with someone who I considered to be a fair judge. They corresponded with a vocational expert, treated me with respect (even after I turned down the final chance to have a lawyer represent me), and took all evidence into thoughtful consideration, including the neurology report and testimony of a witness who accompanied me.  

I share this to serve as an illustration of what it's like to travel down this road. It took a lot of detours and led to quite a few dead ends, but to put a face on the “invisibility” that millions of us live with and have it validated is another small step forward.   

Upon being dismissed, the clerk congratulated me and said something that will stick with me forever: "It's not that you weren't doing or wouldn't continue to do well in past endeavors but your calling is higher."

We can find meaning to our lives despite all the rerouting. Sometimes we're even able to build an entirely new path.

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

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Outcomes Matter When Opioids Are Tapered

By Roger Chriss, PNN Columnist

The drug overdose crisis has led to a rethinking of pain management. Prescription opioids are now seen as risky medications with potentially serious side effects, including addiction and overdose. As a result, there is an increasing push to discontinue or taper patients on long-term opioid therapy.

A recent op/ed in the Annals of Internal Medicine by physicians Roger Chou, Jane Ballantyne and Anna Lembke claims there is “little benefit” from long-term opioid use and “many patients” would benefit from tapering. They even suggest that the use of addiction treatment drugs such as Suboxone should be expanded to include pain patients dependent on opioids.

“Evidence indicates that long-term opioid therapy confers little benefit versus nonopioid therapy, particularly for function. Opioid use disorder (OUD) occurs in a subset of patients, and quality of life may be adversely affected despite perceived pain benefits,” they wrote.

“We argue that achieving effective, safe, and compassionate tapers requires implementing and incentivizing tapering protocols, recognizing prescription opioid dependence as a distinct clinical condition necessitating treatment, and expanding the indication for buprenorphine formulations approved for OUD to include prescription opioid dependence.”

It should be noted Chou is one of the co-authors of the CDC’s controversial opioid prescribing guideline, while Ballantyne and Lembke are board members of the anti-opioid activist group Physicians for Responsible Opioid Prescribing (PROP). Ballantyne, who is president of PROP, was part of the “core expert group” that advised the CDC when it was drafting its guideline.

What Happens to Tapered Patients?

The goal of improving patient safety is admirable. However, there is relatively little data on what happens to patients during tapering or after opioids are discontinued. The evidence is mixed at best.

A 2018 review in Pain Medicine of 20 studies involving over 2,100 chronic pain patients found that most patients had less pain or the same amount of pain when tapering was completed. But the studies were not controlled and the evidence was of marginal quality, with large amounts of data missing.

A 2019 study in the journal Pain evaluated outcomes in 49 former opioid users with chronic pain. The findings showed that about half the patients reported their pain to be better or the same after stopping opioids, while the other half reported their pain was worse.

There are risks associated with tapering that also need to be considered, such as uncontrolled pain, suicide, overdose and early death. The tapering process itself can be extremely challenging and patient outcomes after discontinuation are not necessarily positive.

A recent study in the Journal of General Internal Medicine looked at what happened to chronic pain patients being treated at a large urban healthcare system in the year after they were tapered.

For about 5 percent of patients, “termination of care” was the primary outcome – a vague category that means there was no record of them seeking further treatment. Some of those patients may have miraculously gotten better and required no healthcare. And some may have died.

“These findings invite caution and demonstrate the need to fully understand the risks and benefits of opioid tapers,” the authors warned.

Another study in the same journal is also concerning. Researchers at the University of Washington followed 572 patients who were treated with opioids at a Seattle pain clinic. About 20 percent of the patients died, a high mortality rate, but the death rate was even higher for patients who were tapered. Seventeen of them died from a definite or possible overdose.

“In this cohort of patients prescribed COT (chronic opioid therapy) for chronic pain, mortality was high. Discontinuation of COT did not reduce risk of death and was associated with increased risk of overdose death,” the authors concluded.

"We are worried by these results, because they suggest that the policy recommendations intended to make opioid prescribing safer are not working as intended," said lead author Jocelyn James, assistant professor of general internal medicine at the University of Washington School of Medicine. "We have to make sure we develop systems to protect patients."

In other words, opioid discontinuation does not necessarily lead to better outcomes, as Chou, Ballantyne and Lembke suggest. The blind push to taper patients at all costs to reduce opioid prescribing can have tragic consequences — which no one seems to be tracking.

“Crucially, today’s opioid prescribing metrics take no count of whether the patient lives or dies. Data from two recent studies strongly suggest it is time to start counting. The sooner quality standards are revised in favor of genuine patient protection, the better,” says Stefan Kertesz, MD, an Alabama physician and researcher.

Outcomes matter. And they need to be reasonable for the patient. A person with a self-limiting condition like low back pain may well benefit from opioid discontinuation. But some patients with more chronic conditions do not get better, and their needs cannot go ignored.

The Canadian Psychological Association emphasizes caution and patient safety in a recent position paper on the opioid crisis:  “Tapering must always be done gradually under physician or nurse practitioner supervision, with the patient's consent, and with ongoing support and monitoring of pain and functioning, as well as management of withdrawal symptoms."

The use of prescription opioids should always take patient risks and benefits into consideration. It also requires knowing about outcomes when taking patients off opioids. At present there is too much interest in numbers and too little interest in people.

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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Enough Is Enough!

By David Eaton, Guest Columnist

Back in 2007, when my back pain became so severe that it was affecting my ability to work, I wrote an email to my boss using the subject line, "Enough is Enough!"

My pain level was hindering my ability to concentrate so much that, despite having a college education, I had to ask a friend how to spell the word "place." I could not figure out why "plase" sounded right but looked so wrong.  

The previous night, I could not even read a lesson to the teenagers at my church, despite the fact that I had taught the exact same lesson twice before -- and I was the one who wrote it.

Pain medication and procedures such as epidural nerve blocks and RFA treatments kept my pain under control for most of the past decade, until the CDC introduced its opioid prescribing guideline. As a result, I have been bedridden for most of the past month.

My pain issues began 40 years ago in my senior year of high school, when I was in a motor vehicle accident which resulted in me being thrown through the rear window of the car and landing 35 feet away on my head. The impact caused a compression fracture at the base of my neck and damage to multiple discs as well.

Within a few years, it became necessary for a neurosurgeon to cut a section out of both of the occipital nerves going up the back of my neck and into my scalp as a long-term treatment for the massive headaches I was having.

Unfortunately, the nerves grew back together after 35 years and the migraine headaches have returned --- along with nerve related pain caused by disc degeneration and arthritis.

DAVID EATON

Another auto accident 25 years ago caused my knees to slam into the hard dash of my minivan. During the ambulance ride to the hospital, the paramedics told me that I would likely be using a cane within 5 years and in a wheelchair within a decade. They were not far off. I managed to go 13 years before the pain in my knees became so severe that I could no longer climb in and out of my car or walk into the office.

Now, after being on disability for a decade, I am unable to straighten my legs. Attempting to stand, much less walk a step or two, is both excruciating and impossible.

And, if you order right now, we will include a free congenital birth defect that resulted in severe stenosis in my lower back. This was only magnified when I suffered a slipped disc 12 years ago.

It was at that time that I was referred to a pain clinic, which used a combination of medications and procedures to control my pain. Those treatments were very successful. While they did not eliminate the pain, they were at least able to keep it at a manageable level until the CDC stuck their nose between my doctor and myself.

Their guideline has resulted in some pain clinics not prescribing anything stronger than what you can get over the counter. While I am sure that part of the clinics’ decision making included the fact that they make profits off of additional office visits, as well as surgical procedures, the end result is the same: Patients are left hurting and becoming depressed to the point of suicide.  

My doctors regularly question me about suicidal thoughts, as well as a list of other mandatory questions any time I even hint at being depressed. The truth is that I am depressed and have been for quite some time, but even more so now that the pain is so much more severe.

The CDC guideline, a knee-jerk reaction to the opioid epidemic, has resulted in my daily use of extended release opioids to be cut in half. This led to a doubling of not just the amount, but the severity of my pain.

To make matters worse, a change in insurance coverage resulted in me having to be treated by a different pain clinic. The new doctor took me completely off anti-inflammatory medication for the arthritis in my back, neck and knees. The resulting pain wakes me up at the slightest movement. The pain in my knees is so excruciating when I attempt to get from my bed or recliner and into my power chair for a trip to the restroom, that that I put it off as long as I can. 

In addition, the sensory nerves in my legs are now so inflamed that I feel as if someone is stabbing me to the bone or trying to pry off one of my toenails.  I feel as if someone has poured boiling hot coffee down my legs, giving me severe burns on my thighs.

Like I said, enough is enough! I have more pain than I can handle. Something has to give and I am praying that it is a relaxation of the CDC guideline. Maybe it would help if I could get a medical transport van to carry me to the CDC so I could pour a pot of hot coffee down some guy's pants and then check the severity of his burns by repeatedly stabbing him with a meat thermometer.

David Eaton resides outside of Atlanta, GA with his wife of 36 years. He has 2 grown sons, both married, and 4 beautiful grandkids. Prior to becoming disabled, David worked in the IT field. He was also heavily involved in his church, where he taught Sunday school and served as Youth Minister.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org. 

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.