Hemp-Derived Delta-8 Raises Health Concerns

By Eric Berger, Kaiser Health News

Suzan Kennedy has smoked marijuana, and says her Wisconsin roots mean she can handle booze, so she was not concerned earlier this year when a bartender in St. Paul, Minnesota, described a cocktail with the cannabinoid delta-8 THC as “a little bit potent.”

Hours after enjoying the tasty drink and the silliness that reminded Kennedy of a high from weed, she said, she started to feel “really shaky and faint” before collapsing in her friend’s arms. Kennedy regained consciousness and recovered, but her distaste for delta-8 remains, even though the substance is legal at the federal level, unlike marijuana.

“I’m not one to really tell people what to do,” said Kennedy, 35, who lives in Milwaukee and works in software sales. But if a friend tried to order a delta-8 drink, “I would tell them, ‘Absolutely not. You’re not putting that in your body.’”

The FDA and some marijuana industry experts share Kennedy’s concerns. At least a dozen states have banned the hemp-derived drug, including Colorado, Montana, New York, and Oregon, which have legalized marijuana. But delta-8 manufacturers call the concerns unfounded and say they’re driven by marijuana businesses trying to protect their market share.

So what is the difference? The flower of the marijuana plant, oil derived from it, and edibles made from those contain delta-9 tetrahydrocannabinol, the substance that produces the drug’s high, and can be legally sold only at dispensaries in states that have legalized marijuana.

Similar products that contain delta-8 THC are sold online and at bars and retailers across much of the U.S., including some places where pot remains illegal. That’s because a 2018 federal law legalized hemp, a variety of the cannabis plant. Hemp isn’t allowed to contain more than 0.3% of the psychotropic delta-9 THC found in marijuana.

Delta-8 Contaminants

The concerns about delta-8 are largely focused on how it’s made. Delta-8 is typically produced by dissolving CBD — a compound found in cannabis plants — in solvents, such as toluene that is often found in paint thinner. Some people in the marijuana industry say that process leaves potentially harmful residue. A study published in the journal Chemical Research in Toxicology last year found lead, mercury, and silicon in delta-8 electronic cigarettes.

The FDA has issued warnings about the “serious health risks” of delta-8, citing concerns about the conversion process, and has received more than 100 reports of people hallucinating, vomiting, and losing consciousness, among other issues, after consuming it. From January 2021 through this February, national poison control centers received more than 2,300 delta-8 cases, 70% of which required the users to be evaluated at health care facilities, according to the FDA.

Delta-8 is “just the obvious solution to people who want to have access to cannabis but live in a state where it’s illegal,” said Dr. Peter Grinspoon, a primary care physician at Massachusetts General Hospital and a longtime medical cannabis provider. “You can either get in a lot of trouble buying cannabis, or you can get delta-8.”

Grinspoon described delta-8 as about half as potent as marijuana. But because of the lack of research into delta-8’s possible benefits and the absence of regulation, he would not recommend his patients use it. If it were regulated like Massachusetts’ medical and recreational marijuana programs, he said, harmful contaminants could be flagged or removed.

‘Incredible Potential as Therapeutic’

Christopher Hudalla, chief scientific officer at ProVerde Laboratories, a Massachusetts marijuana and hemp testing company, said he has examined thousands of delta-8 products and all contained contaminants that could be harmful to consumers’ health.

Delta-8 has “incredible potential as a therapeutic” because it has many of the same benefits as marijuana, minus some of the intoxication, said Hudalla. “But delta-8, like unicorns, doesn’t exist. What does exist in the market is synthetic mixtures of unknown garbage.”

Justin Journay, owner of the delta-8 brand 3Chi, is skeptical of the concerns about the products. He started the company in 2018 after hemp oil provided relief for his shoulder pain. He soon started wondering what other cannabinoids in hemp could do. “‘There’s got to be some gold in those hills,’” Journay recalled thinking. He said his Indiana-based company now has more than 300 employees and sponsors a NASCAR team.

When asked about the FDA’s reports of bad reactions, Journay said: “There are risks with THC. There absolutely are. There are risks with cheeseburgers.”

He attributes the side effects to taking too much. “We say, ‘Start low.’ You can always take more,” Journay said.

Journay said that he understands concerns about contaminants in delta-8 products and that his company was conducting tests to identify the tiny portion of substances that remain unknown, which he asserts are cannabinoids from the plant.

An analysis of 3Chi delta-8 oil conducted by Hudalla’s firm last year and posted on 3Chi’s website found multiple unidentified compounds that “do not occur naturally” and thus “would not be recommended for human consumption.” Delta-8 oil is still sold on 3Chi’s site.

Journay said the analysis found that only 0.4% of the oil contained unknown compounds. “How can they then definitively say that compound isn’t natural when they don’t even know what it is?” he said in an email.

“The vast majority of negative information out there and the push to make delta-8 illegal is coming from the marijuana industries,” Journay said. “It’s cutting into their profit margins, which is funny that the marijuana guys would all of a sudden be for prohibition.”

Delta-8 products do appear to be significantly cheaper than weed. For example, Curaleaf, one of the world’s largest cannabis companies, offers packages of gummies that contain 100 milligrams of delta-9 THC for $25, plus sales tax, at a Massachusetts dispensary. At 3Chi, gummies with 400 milligrams of delta-8 cost $29.99 online, with no tax.

Journay’s criticism of the marijuana industry holds some truth, said Chris Lindsey, government relations director for the Marijuana Policy Project, which advocates for legalization of marijuana for adults.

“We see this happen in every single adult-use legalization state,” said Lindsey. “Their established medical cannabis industry will sometimes be your loudest opponents, and that’s a business thing. That’s not a marijuana thing.”

Still, the bans might not be working fully. In New York, which banned delta-8 in 2021, Lindsey said, it’s available at any bodega.

“In an environment where whole-plant cannabis is legally available, there would be little to no demand for these alternative products.”

— Paul Armentano, NORML

In July, Minnesota implemented a law that limits the amount of THC, including delta-8, allowed in hemp products outside of its medical marijuana program. News reports said the law would wipe out delta-8. But the state cannot “control what’s being sold over the internet outside of Minnesota and shipped in,” said Maren Schroeder, policy director for Sensible Change Minnesota, which aims to legalize recreational cannabis for adults.

Max Barber, a writer and editor in Minneapolis, remains interested in delta-8 despite his state’s restrictions. Even though he could likely obtain a medical marijuana prescription because he has an anxiety disorder and chronic sleep problems, he hasn’t pursued it because pot made his anxiety worse. He used CBD oil but found the effects inconsistent. In March 2021, he tried a 10-milligram delta-8 gummy.

“It got me pretty high, which I don’t enjoy,” he said.

Then he found what he considers the right dosage for him: one-third of a gummy, which he takes in the evening. He said he now gets between six and eight hours of sleep each night, has less anxiety, and is better able to focus. “I have become kind of an evangelist for delta-8 for everyone I know who has sleep problems,” said Barber, who bought enough gummies to last for months after the new law went into effect.

To address concerns about delta-8, the federal government should regulate it and make accessing cannabis easier for consumers, said Paul Armentano, deputy director of the National Organization for the Reform of Marijuana Laws.

He pointed to a recent study in the International Journal of Drug Policy showing that the number of Google searches for delta-8 in the U.S. soared in 2021 and that interest was especially high in states that restricted cannabis use. “In an environment where whole-plant cannabis is legally available, there would be little to no demand for these alternative products,” said Armentano.

Lindsey, of the Marijuana Policy Project, isn’t so sure that would matter. When he first learned of delta-8’s growing popularity in 2021, he thought it would go the way of drugs like K2 or Spice that he said fall between the regulatory rules long enough to get on shelves before eventually getting shut down.

“That didn’t materialize,” said Lindsey. “The more that we understand about that plant, the more of these different cannabinoids are going to come out.” And that, he said, will in turn spur interest from consumers and businesses.

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

My Story: Hospitals Are Undertreating Pain

By Michael Swift, Guest Columnist

Right now, as I type this, I can barely finish because I just got home from a surgery in my abdominal area. I won't get into the details, but a lot of cutting was done, and I was discharged after an agonizing hospital stay. I was given Tylenol and Naproxen for post-surgical pain.

I am now reclined in bed at home and suffering from post-op pain because a major hospital in a city of a quarter million people is undertreating pain. This is the new norm for most hospitals here in Texas.

My wife and I lived in beautiful central Oregon all our lives. We ended up vacating the house we rented and could find no place to live in the entire state that was affordable to us. For family reasons, we moved to the Texas Panhandle.

My wife, seeking a new pain specialist in Amarillo, was denied and bawled-out two times by doctors. She was told by one verbatim: “We don't push dope here. If you want drugs, go to the north side of town."

I almost walked back in after she told me what this doctor had said to her, to punch him in the mouth. But it would do no good trying to help her from a jail cell. She was visibly upset, in tears, humiliated and so hurt. She is a 67-year-old senior with spinal stenosis and a bone disease that is destroying her vertebral column. Even with stellar remarks by her former providers as a "model patient with legitimate pain,” she was still an object for these millennial brats to verbally spit upon.

When living back in Oregon, my wife and I had a wonderful provider in Bend and our lives were fully active. We failed however to do our homework before moving to Texas. When we arrived, we realized that the Texas Medical Board and certain medical groups and doctors decided they wanted to solve the huge drug abuse problem.

The real problem here has been massive amounts of illicit fentanyl, comprising about 75% of overdose deaths, along with heroin, ecstasy and many other street drugs pushed in by the Sinaloa drug cartel. Nevertheless, the medical board went after the doctors and patients because it was easier than addressing the real problem.

A Broken Healthcare System

To say the least, I am saddened, upset and feeling a huge weight of condemnation from individuals here in the medical field. What a broken and detached healthcare system.

We are both leaving Texas for a nearby state, already set up with a new provider there, who is willing to take a good look at her without judgement. I am not leaving though, until I file a complaint against both pain management providers for their unethical, cruel treatment and libelous slander -- with the use of profanity to my wife's face -- all confirmed by the nurse in the exam room.

I will also file a complaint with the Texas Medical Board for the experience I had as a surgery patient. It will fall on deaf ears, but I won't stop until I get a response. To those of you out there who are also suffering and abandoned, take any and EVERY measure available to control your pain, which is robbing you of your life. You have no other choice.

There is a terrible and frightening experience awaiting those who are destined to go under the knife in hospitals that have overreacted to the "opioid crisis” by implementing a new policy of completely abstaining from administering any narcotic pain medication to post-surgical patients.

I suppose I could have screamed at the top of my lungs to demand pain relief, but who wants that on their record. Or worse, to be blacklisted. Thank God I have an alternate source of pain relief, but I am still astounded.

I am a veteran of nine prior surgeries, all of them done over 20 years ago. When I was in the hospital after those surgeries, I was asked by a nurse what narcotic I wanted to choose for pain relief. After that, I stayed healthy, avoided more surgeries and interpreted the many stories I heard about "Tylenol for post-op pain" as nothing but false tales and fear-mongering.

To all and any of you who posted such statements, I sincerely apologize. You were telling the truth.

Michael Swift lives with degenerative disc disease, arthritis and severe migraines.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org

Virtual Reality Therapy Reduces Drug Use During Surgery

By Madora Pennington, PNN Columnist

Imagine going in for minor surgery, one where you don’t need to be totally unconscious, and being given a virtual reality headset for pain and anxiety relief instead of the usual dose of anesthesia.

The virtual reality (VR) device would distract you during surgery by immersing you in a nature scene, like a forest, mountain top or nighttime sky. And a guide meditation would reassure you with, “Surgery is going great! Try to stay still!”

Would this even work?

A small study led by researchers at the University of Colorado sought to find out by looking at 34 patients receiving hand surgery that could be done without general anesthesia. While virtual reality has been widely studied as a treatment for acute and chronic pain, researchers are just beginning to explore whether it can be used during surgery.

“In the field of anesthesia, we are constantly focused on improving patient safety and care quality,” said lead author Adeel Faruki, MD, an anesthesiologist at the University of Colorado Hospital. “There are many studies currently underway assessing if VR can be used for orthopedic joint surgeries.”

Faruki and his colleagues divided the patients into two groups. Half received the usual care and served as a control group, while the other half wore VR headsets and noise-cancelling headphones during surgery to promote relaxation and calmness. Both groups received local anesthesia and the sedative propofol, either upon patient request or at the discretion of an anesthesiologist.

Researchers found that patients in the VR group received significantly less propofol than those in the control group. Only four of the 17 patients in the VR group received any propofol during their surgery, while every patient in the control group received the sedative.

PLOS ONE

Not surprisingly, the VR patients tended to need more supplemental local anesthesia. Propofol can amplify the effectiveness of pain medication, so patients on propofol generally require less numbing and pain relief.

Patients in both groups reported their pain was well-controlled and they felt relaxed during surgery. There were no significant differences in their pain scores or surgery outcomes. In short, the VR group did just as well with the pleasant distraction of the device as those receiving more sedating medication.

There are advantages to using less propofol. The drug is commonly used as sedative during surgery, but poses risks because it tends to depress breathing, which is dangerous. “Acute propofol intoxication" was cited as the cause of pop star Michael Jackson’s overdose death in 2009.

Propofol is also hard on the brain and may cause lower cognition after surgery.  Being less drugged, patients who received VR were discharged from the postoperative recovery room an average of 22 minutes earlier than fully medicated patients. Getting patients released early frees hospital staff and resources for other patients and needs.

Some limitations the authors of the study acknowledge are that patients signing up for VR might be more likely to do well with less anesthesia if they volunteered for it. Neither the patients nor the healthcare providers were “blinded” in this study, meaning everyone knew which patients were getting VR and which ones weren’t. This scenario opens the possibility that providers participating in the study might inadvertently influence the results by giving the VR patients less propofol.

The bottom line for this study, which is being published in PLOS ONE, is that patients can have just as comfortable a surgery with less sedation when VR is used. The study does not prove that VR is better, just that it does as well as sedative medication.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. Madora has tried virtual reality therapy and found it useful in reducing both pain and anxiety.  

Gabapentin Raises Risk of Delirium in Older Surgery Patients

By Pat Anson, PNN Editor

It’s become trendy in recent years for U.S. hospitals to use gabapentin (Neurontin) as a “safer” alternative to opioids for post-operative pain.  But a large new study has found that gabapentin increases the risk of delirium and other adverse health effects in older patients recovering from surgery.

The study, published in JAMA Internal Medicine, looked at nearly a million patients over the age of 65 who had major surgical procedures, including cardiac, orthopedic and gastrointestinal surgeries. About 12% of the patients received gabapentin and other analgesics for perioperative pain management between the day of surgery and two days after surgery.

Researchers found that gabapentin “modestly increased” the risk of delirium, a mental state in which a person becomes confused, disoriented and unable to think or remember clearly. Patients who received gabapentin were also more likely to be prescribed antidepressants and other anti-psychotic drugs, and to develop pneumonia.

“Considering the increasing number of major surgeries performed in older adults, and the negative consequences of perioperative delirium, our findings raise concern about an increasingly adopted clinical practice that involves routine use of gabapentin as part of multimodal analgesia,” wrote lead author Dae Hyun Kim, MD, a geriatrician and epidemiologist at Brigham and Women's Hospital and Assistant Professor of Medicine at Harvard Medical School.

“On the basis of these findings and those of meta-analyses of RCTs (randomized controlled trials) showing a weak opioid-sparing effect of gabapentin, clinicians should reconsider routine use of gabapentin for perioperative pain management among older adults and individualize the treatment decision after assessing the risk of immediate harms vs opioid-sparing benefits of perioperative gabapentin use.”

‘Windfall Medication’

Although gabapentin is an anti-convulsant that was originally developed to treat epilepsy, it is increasingly prescribed “off-label” to treat various types of pain. In 2016, the American Pain Society recommended that gabapentin be used “around the clock” for post-operative pain because it lowered pain scores and reduced the use of opioids. But studies later found the drug was ineffective for post-operative pain and actually increased the risk of an overdose.

An editorial published in JAMA Internal Medicine said the new study demonstrates that the risks of gabapentin outweigh its potential benefits in older patients.

“These results are consistent with what is now a growing body of literature suggesting that gabapentin may not be the windfall medication for perioperative pain management that surgeons hoped it might be for decreasing opioid use. The adverse events reported in this study (delirium, antipsychotic use, and pneumonia) add to similar findings that gabapentin, especially when used concomitantly with opioids, increases the risk of postoperative sedation and dizziness,” wrote lead author Zachary Marcum, PharmD, University of Washington School of Pharmacy.  

“As the use of gabapentin continues to rise, it is critically important clinicians understand its risks, especially for older adults. Poorly controlled postoperative pain is associated with several complications, including cognitive impairment, delirium, depression, decreased mobility, and longer recovery.”

It’s a common misconception that patients often become addicted to opioids after surgery. A 2016 Canadian study found that long term opioid use after surgery is rare, with only 0.4% of older adults still taking opioids a year after major elective surgery. A 2018 study at Harvard Medical School had similar findings. Only 0.6% of patients who were prescribed opioids for post-operative pain were later diagnosed with opioid dependence, abuse or a non-fatal overdose.

Supreme Court Ruling Gives Hope to Doctors Facing Opioid Charges

By Brett Kelman, Kaiser Health News

Dr. Nelson Onaro conceded last summer that he’d written prescriptions illegally, although he said he was thinking only of his patients. From a tiny, brick clinic in Oklahoma, he doled out hundreds of opioid pills and dozens of fentanyl patches in a way that was "outside the usual course of professional practice."

“Those medications were prescribed to help my patients, from my own point of view,” Onaro said in court, as he reluctantly pleaded guilty to six counts of drug dealing. Because he confessed, the doctor was likely to get a reduced sentence of three years or less in prison.

But Onaro changed his mind in July. In the days before his sentencing, he asked a federal judge to throw out his plea deal, sending his case toward a trial. For a chance at exoneration, he’d face four times the charges and the possibility of a harsher sentence.

Why take the risk? A Supreme Court ruling has raised the bar to convict in a case like Onaro’s. In a June decision, the court said prosecutors must not only prove a prescription was not medically justified ― possibly because it was too large or dangerous, or simply unnecessary ― but also that the prescriber knew as much.

Suddenly, Onaro’s state of mind carries more weight in court. Prosecutors have not opposed the doctor withdrawing his plea to most of his charges, conceding in a court filing that he faces “a different legal calculus” after the Supreme Court decision.

The court’s unanimous ruling complicates the Department of Justice’s ongoing efforts to hold prescribers criminally liable for fueling the opioid crisis. Previously, lower courts had not considered a prescriber’s intention. Until now, doctors on trial largely could not defend themselves by arguing they were acting in good faith when they wrote bad prescriptions. Now they can, attorneys say, although it is not necessarily a get-out-of-jail-free card.

“Essentially, the doctors were handcuffed,” said Zach Enlow, Onaro’s attorney. “Now they can take off their handcuffs. But it doesn’t mean they are going to win the fight.”

The Supreme Court’s decision in Ruan v. United States, issued June 27, was overshadowed by the nation-shaking controversy ignited three days earlier, when the court erased federal abortion rights. But the lesser-known ruling is now quietly percolating through federal courthouses, where it has emboldened defendants in opioid prescribing cases and may have a chilling effect on future prosecutions of doctors under the Controlled Substances Act.

In the three months since it was issued, the Ruan decision has been invoked in at least 15 ongoing prosecutions across 10 states, according to a KHN review of federal court records. Doctors cited the decision in post-conviction appeals, motions for acquittals, new trials, plea reversals, and a failed attempt to exclude the testimony of a prescribing expert, arguing their opinion was now irrelevant. Other defendants have successfully petitioned to delay their cases so the Ruan decision could be folded into their arguments at upcoming trials or sentencing hearings.

David Rivera, a former Obama-era U.S. attorney who once led prescribing prosecutions in Middle Tennessee, said he believes doctors have a “great chance” of overturning convictions if they were prohibited from arguing a good faith defense or a jury was instructed to ignore one.

Rivera said defendants who ran true pill mills would still be convicted, even if a second trial was ultimately required. But the Supreme Court has extended a “lifeline” to a narrow group of defendants who “dispensed with their heart, not their mind,” he said.

“What the Supreme Court is trying to do is divide between a bad doctor and a person who might have a license to practice medicine but is not acting as a doctor at all and is a drug dealer,” Rivera said. “A doctor who is acting under a sincerely held belief that he is doing the right thing, even if he may be horrible at his job and should not be trusted with human lives ― that’s still not criminal.”

The Ruan decision resulted from the appeals of two doctors, Xiulu Ruan and Shakeel Kahn, who were separately convicted of running pill mills in Alabama and Wyoming, respectively, then sentenced to 21 and 25 years in prison. In both cases, prosecutors relied on a common tactic to show the prescriptions were a crime: Expert witnesses reviewed the defendants’ prescriptions and testified that they were far out of line with what a reasonable doctor would do.

But in writing the opinion of the Supreme Court, then-Justice Stephen Breyer insisted the burden of proof should not be so simple to overcome, remanding both convictions back to the lower courts for reconsideration.

Because doctors are allowed and expected to distribute drugs, Breyer wrote, prosecutors must not only prove they wrote prescriptions with no medical purpose but also that they did so “knowingly or intentionally.” Otherwise, the courts risk punishing “conduct that lies close to, but on the permissible side of, the criminal line,” Breyer wrote.

To defense attorneys, the unanimous ruling sent an unambiguous message.

“This is a hyperpolarized time in America, and particularly on the court,” Enlow said. “And yet this was a 9-0 ruling saying that the mens rea ― or the mental state of the doctor ― it matters.”

Maybe nowhere was the Ruan decision more pressing than in the case of Dr. David Jankowski, a Michigan physician who was on trial when the burden of proof shifted beneath his feet.

Jankowski was convicted of federal drug and fraud crimes and faces 20 years in prison. In an announcement of the verdict, the DOJ said the doctor and his clinic supplied people with “no need for the drugs,” which were “sold on the streets to feed the addictions of opioid addicts.”

Defense attorney Anjali Prasad said the Ruan ruling dropped before jury deliberations in the case but after prosecutors spent weeks presenting the argument that Jankowski’s behavior was not that of a reasonable prescriber — a legal standard that on its own is no longer enough to convict.

Prasad cited the Ruan decision in a motion for a new trial, which was denied, and said she intends to use the decision as a basis for a forthcoming appeal. The attorney also said she is in discussion with two other clients about appealing their convictions with Ruan.

“My hope is that criminal defense attorneys like myself are more emboldened to take their cases to trial and that their clients are 100% ready to fight the feds, which is no easy task,” Prasad said. “We just duke it out in the courtroom. We can prevail that way.”

Some defendants are trying. So far, a few have scored small wins. And at least one suffered a crushing defeat.

In Tennessee, nurse practitioner Jeffrey Young, accused of trading opioids for sex and notoriety for a reality show pilot, successfully delayed his trial from May to November to account for the Ruan decision, arguing it would “drastically alter the landscape of the Government’s war on prescribers.”

Also in Tennessee, Samson Orusa, a doctor and pastor who last year was convicted of handing out opioid prescriptions without examining patients, filed a motion for a new trial based on the Ruan decision, then persuaded a reluctant judge to delay his sentencing for six months to consider it.

And in Ohio, Dr. Martin Escobar cited the Ruan ruling in an eleventh-hour effort to avoid prison.

Escobar in January pleaded guilty to 54 counts of distributing a controlled substance, including prescriptions that caused the deaths of two patients. After the Ruan decision, Escobar tried to withdraw his plea, saying he’d have gone to trial if he’d known prosecutors had to prove his intent.

One week later, on the day Escobar was set to be sentenced, a federal judge denied the motion. His guilty plea remained and Escobar got 25 years.

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

The Era of No Diagnosis

By Dr. Forest Tennant, PNN Columnist

Recently I was given a report written by a prestigious professional pain organization proposing that “back pain” should be the only diagnosis assigned to this condition.  They want to do away with any diagnosis like herniated disc, arachnoiditis, sprain, strain or rheumatoid spondylitis.  Their rationale was that pain treatment should be the same for every case of back pain, therefore there is no need to make a causative, underlying diagnosis for each patient. 

To me, their motivation was clear.  It takes training, time, expertise and money to make a correct medical diagnosis, and this group only wanted to treat the symptom of pain.  Or maybe they just want robots to take a pain complaint and exercise a preconceived, no-human touch medical protocol as treatment?

This non-diagnostic proposal goes along with the large number of papers that wish to declare pain a disease rather than a symptom.  Let us be abundantly clear:  Pain, as a symptom, can be part of a disease, syndrome, disorder or condition, but pain itself is not a disease.

Some diseases definitely cause pain. Good common sense medical practice has included, and should continue to include, a search for the basic cause of an individual’s pain. What’s more, the focus should be on treating the cause of pain rather than just treating the symptom of pain. Diagnosis is the process of identifying the cause of illness whether it be a disease, condition or injury.

My recent experience in studying adhesive arachnoiditis (AA) has revealed some pathetic information about the failure of some doctors to make a diagnosis.  In an effort to develop prevention measures and treatment protocols, we surveyed several dozen people who developed AA after an epidural corticosteroid injection or a spinal tap.  In these cases, the individual singularly blamed the development of AA on one of these procedures. 

The amazing statistic, however, is that barely a third of these individuals could give us the diagnosis that prompted a physician to do an epidural injection or spinal tap in the first place.  Spinal taps were usually done in an emergency room, and only about half of these patients could even remember the symptoms that caused the emergency visit.

One-Size-Fits-All Treatment

A great disconnect has developed between primary care physicians, pain clinics and patients.  In most cases today, a person with neck, back or extremity pain will initially consult with their primary care physician. In many cases, the doctor will then refer the patient to the local pain clinic, expecting the clinic to determine a specific causative diagnosis and develop a patient-specific treatment plan. 

That is what usually happens when a primary care doctor refers a patient to an allergist, rheumatologist or cardiologist. The medical specialist makes a diagnosis and develops a patient specific plan that either the specialist or the referring doctor will follow while treating the patient. 

But this rarely happens today when a primary care physician refers a patient to a pain clinic.  Almost never is a specific diagnosis made, but a “one-size-fits-all” pain treatment regimen is initiated.  Or worse, the pain patient is given the diagnosis of “opioid use disorder” and placed on the addiction treatment drug Suboxone, even if they have been successfully maintained for years on opioids with no abuse issues.  The referring physician may never even see the patient again. 

The upshot of this practice is that some pain clinics are treating dozens of bonafide patients without a specific medical diagnosis other than neck, back or leg pain, or “opioid use disorder.”

There are some other unacceptable non-diagnostic scenarios these days.  Severe chronic pain is often caused by a rare obscure disease such as AA or Ehlers-Danlos Syndrome.  Patients will often obtain their unusual disease diagnosis and present it to a physician for care, who declares that he/she doesn’t accept the diagnosis. 

A patient may then dare to ask, “Then what do I have and what is the treatment?”  It’s hard to believe, but some patients are being told, “I don’t accept that diagnosis, but since I don’t have another one, I can’t treat you.”

Another story commonly told these days is the patient who complains about “pain all over” and is prescribed a long list of medications, but doesn’t receive a causative diagnosis.  Some patients have gone to a dozen or more doctors, but not one has rendered a causative diagnosis.

The opioid and COVID epidemics have obscured a lot of positive diagnostic developments that have gone on behind the scenes and which greatly assist in making a causative diagnosis. Improved blood tests for inflammatory and autoimmune markers are now available. Genetic and hormone testing can not only pin down a diagnosis, but also provide a roadmap for treatment.  And contrast magnetic resonance imaging (MRI), which distinguishes spinal fluid from solid tissue, has made the specific diagnosis of spinal canal pathologies most accessible.  

Every chronic pain patient not only deserves, but needs a specific medical diagnosis so that the basic cause of their pain can be treated, as well as relieving the symptom of pain.  Without treating the underlying cause of chronic pain, the patient is often doomed to a pained life of diminishing quality until death. 

Modern medicine now has the knowledge and technology to do better.  Why aren’t we?

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

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

Opioid Prescriptions Down Sharply for Medicare Patients

By Pat Anson, PNN Editor

The number of Medicare beneficiaries receiving opioid prescriptions has declined significantly since 2016, according to a new government report that also found steep declines in the number of beneficiaries receiving high doses or who appear to be doctor shopping.

The report by the Department of Health and Human Service’s Office of Inspector General found that over 21 million people -- 23% of Medicare Part D beneficiaries -- received at least one opioid prescription in 2021, down from 33% of beneficiaries in 2016. Over 51 million people are currently enrolled in Part D.

The Centers for Medicare and Medicaid Services (CMS) adopted new safety rules in 2018 that discourage high dose prescribing and limit the initial supply of opioids to 7 days. The rules also allowed pharmacists and insurers to flag Medicare patients deemed to be at high risk, as well as their prescribers.

The rules appear to have had a major impact on prescribing. In 2016, over half a million Medicare beneficiaries received a daily opioid dose of at least 120 MED (morphine milligram equivalent). By 2021, that fell to less than 200,000 patients, a 60 percent decrease in high dose prescribing.   

MEDICARE PATIENTS RECEIVING HIGH DOSE OPIOIDS

HHS Office of Inspector General

Since 2016, the number of Medicare beneficiaries who appeared to be doctor shopping dropped from 22,300 to 1,800; while the number of doctors with “questionable” prescribing patterns fell from 401 to just 98.  Patients were flagged for doctor shopping if they were on high doses and received opioids from four or more prescribers or four or more pharmacists.

“The opioid epidemic continues to grip the nation. There is clearly still cause for concern and vigilance, even as some positive trends emerge,” the OIG report found. “The number of Medicare Part D beneficiaries who received opioids in 2021 decreased to approximately a quarter of a million beneficiaries, extending a downward trend from prior years. Further, fewer Part D beneficiaries were identified as receiving high amounts of opioids or at serious risk of misuse or overdose. The number of prescribers ordering opioids for large numbers of beneficiaries at serious risk was steady.”

But there is little evidence that less prescribing is reducing addiction and overdoses.  The Centers for Disease Control and Prevention estimates there were nearly 81,000 opioid-related deaths in 2021, nearly twice the number reported in 2016, when the CDC’s opioid guideline was released. The vast majority of deaths involved illicit fentanyl and other street drugs, not prescription opioids.

The OIG report found that 50,391 Part D beneficiaries experienced an opioid overdose (either fatal or non-fatal) in 2021, but did not break down how many were linked to illicit or prescription opioids.

Over one million Medicare beneficiaries were diagnosed with opioid use disorder (OUD) last year, but only one in five received a medication like Suboxone or methadone to treat their condition. Medicare patients were far more likely to receive naloxone, an overdose reversal drug. Over 445,000 beneficiaries received a prescription for naloxone, an 18% increase from 2020.

Accepting Our Limits

By Victoria Reed, PNN Columnist

The end of summer is approaching. While it’s been a busy one for me, with a move to a new city and lots of gardening and camping, I realized that there was one thing that I had yet to do. I wanted to go to an amusement park.

Every summer as a child, my parents took me and my siblings to Cedar Point in Ohio, where we would ride the kiddy rides, play games for cheap prizes and eat the worst possible amusement park food! It was a time when there seemed to be less things to worry about, and the days seemed to stretch on forever. Those trips were always the highlight of my summer! 

Then as an older teen and young adult, I would return to Cedar Point with my sisters, friends or boyfriends to ride the newer and bigger roller coasters. I had no problems navigating the park on foot. We would walk for hours and spend a fair amount of time standing in long lines to ride the latest thrill rides. Sure, my feet were a little sore by end of the night, but it was well worth it, considering the fun I had.

Recently, as I was fondly remembering those days of my youth, I made a suggestion to my husband that we go back. We had never gone to an amusement park together and figured it would be a nice ending to an otherwise great summer. He agreed, so I went online to reserve our tickets for a day that we figured would be a slow one. It was a school day, so we presumed that the crowds would be smaller. In addition, the weather forecast called for sunshine and warm temperatures.

Once I secured our tickets, my body reminded me that I am no longer a “spring chicken” and that maybe I should reconsider how I expected to walk all day with sore joints, muscle aches and terrible fatigue. My fibromyalgia and RA weren’t going to make this as easy as it had been in the past.

Over the next few days, I tossed around the idea that I might need some assistance to be able to enjoy our day at Cedar Point. On the park’s website, I had seen that wheelchairs were available for daily rental. At the time, I disregarded that information, preferring to pretend that I wouldn’t need anything such as that. After all, I had run on my high school track team and was one of the best sprinters. Why would I need a wheelchair to enjoy an amusement park?

When I look in the mirror, I still see that 18-year-old athlete who is at the peak of her physical shape...

Not!!

Eventually, I came to my senses and went back online to reserve an electric wheelchair “just in case.” I figured I would just park it, and if I got too tired, it would be there for me to use. It was then that I realized that I must accept my limitations.

Did I want to be seen in a wheelchair? Absolutely not! Having to use a wheelchair does things to your pride and your ego. No one wants to have to use assistive devices, but sometimes we have to and accept the fact that we aren’t as able-bodied as we used to be. It’s not a shameful thing, and we shouldn’t be embarrassed by our needs.

It turned out that renting that wheelchair was a good decision, because it allowed me to enjoy the park a whole lot more than if I had to walk the entire day. My husband’s Fitbit recorded over eight miles of walking that day! There was no way I could have done that amount of walking on what turned out to be a very hot and crowded day. If I had tried, there’s no doubt that it would’ve put me in a bad flare.

Unfortunately, as you get older, your body becomes limited in what it can tolerate. Living with chronic pain and fatigue will increase your limits even more. It’s important to recognize that and make changes accordingly. Accepting our limitations, instead of fighting them, will make our lives easier and more enjoyable.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Seniors Missing Out on Billions of Dollars in Benefits

By Judith Graham, Kaiser Health News

Millions of older adults are having trouble making ends meet, especially during these inflationary times. Yet many don’t realize help is available, and some notable programs that offer financial assistance are underused.

A few examples: Nearly 14 million adults age 60 or older qualify for aid from the federal Supplemental Nutrition Assistance Program (also known as food stamps) but haven’t signed up, according to recent estimates. Also, more than 3 million adults 65 or older are eligible but not enrolled in Medicare Savings Programs, which pay for Medicare premiums and cost sharing. And 30% to 45% of seniors may be missing out on help from the Medicare Part D Low-Income Subsidy program, which covers plan premiums and cost sharing and lowers the cost of prescription drugs.

“Tens of billions of dollars of benefits are going unused every year” because seniors don’t know about them, find applications too difficult to complete, or feel conflicted about asking for help, said Josh Hodges, chief customer officer at the National Council on Aging, an advocacy group for older Americans that runs the National Center for Benefits Outreach and Enrollment.

Many programs target seniors with extremely low incomes and minimal assets. But that isn’t always the case: Programs funded by the Older Americans Act, such as home-delivered meals and legal assistance for seniors facing home foreclosures or eviction, don’t require a means test, although people with low incomes are often prioritized. And some local programs, such as property tax breaks for homeowners, are available to anyone 65 or older.

Even a few hundred dollars in assistance monthly can make a world of difference to older adults living on limited incomes that make it difficult to afford basics such as food, housing, transportation, and health care. But people often don’t know how to find out about benefits and whether they qualify. And older adults are often reluctant to seek help, especially if they’ve never done so before.

“You’ve earned these benefits,” Hodges said, and seniors should think of them “like their Medicare, like their Social Security.”

Here’s how to get started and some information about a few programs.

Getting Help: In every community, Area Agencies on Aging, organizations devoted to aiding seniors, perform benefits assessments or can refer you to other organizations that conduct these evaluations. (To get contact information for your local Area Agency on Aging, use the Eldercare Locator, a service of the federal Administration on Aging, or call 800-677-1116 on weekdays during business hours.)

Assessments identify which federal, state, and local programs can assist with various needs — food, housing, transportation, health care, utility costs, and other essential items. Often, staffers at the agency will help seniors fill out application forms and gather necessary documentation.

A common mistake is waiting until a crisis hits and there’s no food in the refrigerator or the power company is about to turn off the electricity.

“It’s a much better idea to be prepared,” said Sandy Markwood, chief executive officer of USAging, a national organization that represents Area Agencies on Aging. “Come in, sit down with somebody, and put all your options on the table.”

Older adults who are comfortable online and want to do their own research can use BenefitsCheckUp, a service operated by the National Council on Aging, at benefitscheckup.org. Those who prefer using the phone can call 800-794-6559.

Food Assistance: Some aging organizations are adapting to heightened demand for help from seniors by focusing attention on core benefits such as food stamps, which have become even more important as food inflation runs around 10%.

The potential to help seniors with these expenses is enormous. In a new series of reports, the AARP Public Policy Institute estimates that 71% of adults age 60 and above who qualify for the Supplemental Nutrition Assistance Program haven’t signed up for benefits.

In some cases, older adults may think benefits are too small to be worth the hassle. But seniors who lived alone received an average of $104 in food stamps per month in 2019. And at least 3 million adults 50 and above with very low incomes would receive more than $200 a month, AARP estimates.

To combat the stigma that some older adults attach to food stamps, AARP has launched a marketing campaign in Atlanta and Houston explaining that “food prices are rising and we’re all trying to stretch our grocery budgets,” said Nicole Heckman, vice president of benefit access programs at the AARP Foundation.

If the effort alters seniors’ perception of the program and increases enrollment, AARP plans to do a major expansion next year, she said.

Health Care Assistance: AARP is also working closely with community organizations in South Carolina, Alabama, and Mississippi that help older adults apply for Medicare Savings Programs and low-income subsidies for Part D prescription drug plans. It plans to expand this program next year to as many as 22 states.

The value of these health care benefits, targeted at low-income seniors, is substantial. At a minimum, Medicare Savings Programs will cover the cost of Medicare’s Part B premiums: $170 a month, or $2,040 annually, for most seniors. For older adults with the lowest incomes, benefits are even broader, with cost sharing for medical services also covered.

“Even if you think you might not qualify, you should apply because there are different rules across states,” said Meredith Freed, a senior policy analyst for KFF’s Program on Medicare Policy.

Low-income subsidies for Part D prescription drug plans, also known as Extra Help, are worth $5,100 annually, according to the Social Security Administration. Currently, some seniors get only partial benefits, but that will change in 2024, when all older adults with incomes below 150% of the federal poverty level ($20,385 for a single person in 2022) will qualify for full Extra Help benefits.

Because these health care programs are complicated, getting help with your application is a good idea. Freed suggested that people start by contacting the State Health Insurance Assistance Program in their state (contact information can be found here). Other potential sources of help are the Medicare hotline (800-633-4227) and your state’s department of aging, which can direct you to community organizations that help with applications. A list of the state departments can be found here.

Other Assistance: Be sure to check out property tax relief programs for seniors in your area as part of a broader “benefits checkup” process.

Older adults with low incomes also can get assistance with high energy bills through the Low Income Home Energy Assistance Program. Your local utility company may also provide emergency relief to seniors who can’t pay their bills. It’s worth making a call to find out, advised Rebecca Lerfelt, the retired assistant director of a Chicago-area Aging and Disability Resource Center. These resource centers help people seeking access to long-term care services and are another potential source of assistance for older adults. You can find one in your area here.

For veterans, “this may be the time to take a look at using your VA benefits,” said Diane Slezak, president of AgeOptions, an Area Agency on Aging in suburban Cook County, Illinois. “I run into a lot of people who are eligible for veterans benefits but not taking advantage of them.”

Advocates for many programs note that agencies serving older adults are facing staff shortages, which are complicating the efforts to provide assistance. Low pay is a commonly cited reason. For example, 41% of Area Agencies on Aging report staff vacancies of up to 15%, while an additional 18% report vacancies up to 25%, according to Markwood. Also, agencies have lost significant numbers of volunteers during the covid-19 pandemic.

At the same time, demand for help has risen, and clients’ needs have become more complex because of the pandemic and growing inflation.

“All of this is being amplified by the financial strains older adults are feeling,” Markwood said.

More healthcare and financial assistance programs can be found in PNN’s Patient Resources section.

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

Older Adults Look Beyond Western Medicine for Help With Joint Pain

By Pat Anson, PNN Editor

Most older Americans use over-the-counter pain medication and exercise to manage their joint pain, according to a large new survey of adults over age 50. Marijuana, opioids and non-steroidal anti-inflammatory drugs (NSAIDs) were rated the most effective pain relievers among those who used them.

The survey of 2,277 adults aged 50 to 80 was conducted online and over the phone early this year as part of the University of Michigan’s National Poll on Healthy Aging. It found that many older adults looked beyond conventional Western medicine for help with their joint pain, but few talked to their doctors about it.

Eight out of ten people (80%) with joint pain said they were confident they could manage it on their own. The survey found that two-thirds (66%) used over-the-counter pain relievers such as NSAID’s or acetaminophen.

The vast majority (89%) also used non-pharmacologic treatments to manage their symptoms, including exercise (64%), massage (26%), physical therapy (24%), splints or braces (13%), and acupuncture or acupressure (5%).

One in four (26%) said they take supplements, such as glucosamine, chondroitin and turmeric, while 11% use cannabidiol (CBD) products and 9% use marijuana.

Only a minority use prescription-based treatments, such as non-opioid pain relievers (18%), steroid joint injections (19%), oral steroids (14%), opioids (14%) and disease-modifying anti-rheumatic drugs (4%).

NATIONAL POLL ON HEALTHY AGING

“There are sizable risks associated with many of these treatment options, especially when taken long-term or in combination with other drugs. Yet 60 percent of those taking two or more substances for their joint pain said their health care provider hadn’t talked with them about risks, or they couldn’t recall if they had,” said Beth Wallace, MD, Assistant Professor of Internal Medicine at Michigan Medicine and a staff rheumatologist at the VA Ann Arbor Healthcare System.

“This suggests a pressing need for providers to talk with their patients about how to manage their joint pain, and what interactions and long-term risks might arise if they use medications to do so.”

Both NSAIDs and oral steroids have health risks, especially for older adults. Chronic NSAID use can worsen medical conditions such as hypertension, kidney disease, gastrointestinal bleeding and cardiovascular disease. Short-term use of oral steroids is associated with similar problems, as well as increased risk of developing diabetes, cataracts, insomnia, depression, and anxiety.

The risks are even greater if NSAIDs and oral steroids are taken together. Despite this, about one in four older adults taking oral steroids for joint pain said they had not discussed the potential risks with their provider.

Joint pain is common among older adults, including those who have not been formally diagnosed with arthritis. Nearly half of those surveyed reported joint pain that limited their daily activities, but few rated their symptoms as severe and most regarded joint pain as a normal part of aging.

Those with severe joint pain were somewhat fatalistic about it, with nearly half (49%) agreeing with the statement that “there is nothing a person with arthritis or joint pain can do to make their symptoms better.” Only 10% of those with mild joint pain agreed there was nothing they could do about it.

“Older adults with fair or poor physical or mental health were much more likely to agree with the statement that there’s nothing that someone with joint pain can do to ease their symptoms, which we now know to be untrue. Health providers need to raise the topic of joint pain with their older patients, and help them make a plan for care that might work for them,” said poll director Preeti Malani, MD, a Michigan Medicine physician who specializes in geriatrics and infectious diseases.

Why ‘Dopesick’ Should Get an Emmy for Fiction

By Dr. Lynn Webster and Hazel Shahgholi

Dopesick, the eight-part Hulu series on the opioid epidemic – sorry, the OxyContin epidemic -- has been nominated for 14 Emmy awards. Based on the best-selling book of the same name by Beth Macy, most of the nominations are well-earned, from the excellent acting of Michael Keaton (nominated for Outstanding Lead Actor) to the breakout performance of Kaitlyn Dever (nominated for Outstanding Supporting Actress) as an addicted patient.

As entertainment, Dopesick is an achievement, but the awards should only be given if the admission is made that the Hulu series is almost entirely fictional. So far, the series’ makers have failed to do so, with Executive Producer Danny Strong claiming that robust research was carried out to make the series as realistic as possible.

“I had done a ton of research, conceived and sold the show before I even knew the book Dopesick existed,” Strong told The Hollywood Reporter. "I read the book, and I loved it. I thought it was a beautiful book, incredibly well done.”

The problems with the Hulu series are many-fold, mostly arising from errors, conflations and under-examinations that are littered throughout Macy’s book, as well as the fact/fiction transition necessary in the baton pass from page to screen.

Strong took many elements of Macy’s dubiously factual text at face value, picking up on the well-established narrative that Purdue Pharma’s marketing of OxyContin was the root cause of the opioid epidemic.

As a result, the series was almost literally bound to fail as an adequate representation of the true origins and spread of opioid use disorder.

OxyContin Misinformation

We know that throughout the opioid epidemic, OxyContin made up, at most, only 4% of the total market for prescription opioids. This data was available at the time of Macy’s book release in 2018 and when the Hulu series came out in 2021. It’s not difficult to find, if one searches beyond the bombast of mainstream news about opioids to focus instead on medical literature and government data.

In the first episode, Strong creates a highly dramatic, but erroneous opening scene. While being questioned by a federal prosecutor, Dr. Samuel Finnix (Michael Keaton), a fictional general practitioner, is asked under oath, “What do you think caused so many deaths in such a short period of time?”

Flashbacks intervene before Finnix states, definitively: “OxyContin.” The prosecutor then hammers home the point by asking, “So just to be clear, you are blaming numerous deaths in your region on just one medication?” And with a heavy-heart, filled with prescriber regret and his own addiction stigmatization, Finnix states, “Yes.”

This total condemnation of Purdue, the Sackler family and OxyContin resides entirely in the realm of fiction. We know from a 2012 Bloomberg BusinessWeek exposé on Florida pill mill operators that it was actually oxycodone and hydrocodone-based generics that were fueling opioid use disorder. It is this type of dangerous, OxyContin-pincered misinformation that has propagated a national misunderstanding about opioids, and kept us from moving from blaming to healing.

Rather than the devoutly religious and close-knit Mallum family, who earn their daily bread through hard work in West Virginia’s mines, the Hulu series has the Sacklers sitting down to meet at opposite ends of a table, as opposed to holding hands in prayer. The Sackler family is separated into those who have “A Shares” and those with “B Shares” in Purdue -- a split that divides the heirs and sees them wrestle over profits. As depicted in the series, the Sacklers are not a family, but a business, through and through.

Fictionalizing the Truth

The time-leaps throughout this eight-part series are anchored on the discoveries of law enforcement as it digs deep into Purdue Pharma. But this organizing principle proves thoroughly dizzying, obfuscating the “human interest” element that makes up much of Macy’s book.

Because the series is also determined to paint physicians and patients in an antagonistic relationship, we end up with just two fictional representations of “doctors” and “patients” -- Keaton’s Dr. Finnix and Dever’s Betsy Mallum, whose characters were explained by Strong in a 2021 interview with NPR, in which he praised the merits of not being “stuck to the truth.”

“If I made these characters composite characters, I get way more of these anecdotes into these arcs with fewer characters and get more truthful stories into the show," Strong said. "By fictionalizing, [emphasis added] I wouldn't be stuck to the truth of one person's life. I could use as many anecdotes as I wanted. I could achieve a more universal truth; a higher truth."

Dr. Finnix is the epitome of a “composite character” into whom most material and several arcs are heavy-handedly stuffed. He is emblematic of a problematic prescriber. We only meet three of his patients in detail — Mallum, his ex-miner patient Jonas, and a young woman named Elizabeth-Anne — all of whom become addicts. Finnix himself becomes addicted, getting high on his patients’ diverted supply. This distillation of Finnix cannot be taken as a “more universal truth,” even in a meager sense, as we shall explore.

The mechanism by which Finnix becomes addicted to OxyContin happens in a flash that straddles two episodes. One moment he is the ever-attentive country physician, happily working 16-hour days, making night calls to elderly patients with dementia to ensure all their daily meds have been duly taken, attending to the injuries of his coal-mining patients, and often delivering their children.

Finnix is a man of simple pleasures; he enjoys fishing with members of the Finch Creek community of which he forms the responsible backbone, until the devil invades the town in the form of OxyContin. Upon receiving a call about an explosion in a mine that has left several workers in critical condition, he speeds back to Finch Creek from a visit to Washington D.C. to see his late-wife’s sister, who has encouraged him to start dating again.

In his haste, Finnix doesn’t buckle-up and is T-boned by another vehicle. He suffers several broken ribs in the accident and is prescribed 20mg of OxyContin, much to his surprise, as he usually starts his patients on 10mg tablets.

Cut to Episode 4, entitled “Pseudo-Addiction.” Without any explanation of why the hitherto cautious prescriber has not had follow-up treatment with an independent physician -- we see Finnix cast in utter damnation, diverting OxyContin prescriptions for his own personal use. Presumably, adding another physician to the story would have taken up too much screen time, and undone the drama of Keaton’s lone composite character.

Dependency and Addiction

Let’s pause for a moment to unpack Strong’s haste. It is again based on a conflation made by Macy, who fails in her book to differentiate between the medical terms “dependency” and “addiction.” This is a false narrative. Addiction and dependence are related, but cannot be equated, and should not be conflated. Many drugs, including antidepressants and anticonvulsants, can cause such physiologic adaptation that abrupt withdrawal can cause serious, even life-threatening events. This is the case with opioids, too.

But being dependent is not the same as being addicted. And by not using the term “dependency” extensively in her book, Macy paints a false picture that hyperbolizes all opioid use, prescription or illicit, as inherently a kind of addiction -- when there are millions of people with chronic pain dependent on opioids, but not addicted.

Interestingly, Strong’s series does use the word “dependency” once, in Episode 4, via a nameless, testifying physician character, and in a scientifically false and unhelpful way. With cuts to Finnix locking the last of his patients’ diverted pills in a glass kitchen cabinet, before smashing said cabinet to smithereens, the unnamed physician states, “Opioids are uniquely challenging as they can change a person’s brain chemistry. But in a desperate effort to end the cycle of dependency, some people try to quit cold turkey, but the results can often be disastrous.”

It is important to note that this moment in the series can be enlarged by turning to statements made by Strong in an interview on MSNBC’s Morning Joe, in which he claimed that “you can be addicted in three days” to OxyContin.

That is blatantly false. Neural adaptation can occur as soon as ingesting the first pill. But this is not necessarily problematic, it is simple science and occurs with many drugs, not just opioids. The claim that you can become addicted to opioids in three days is simply not true, and there is no scientific evidence to support this statement. Physical dependency, which they clearly conflate with addiction, is not even a medical problem at day three, day seven, or day fourteen. It may never even become a problem.

But this question cannot even be properly attended to until the differentiation between addiction and dependency is substantiated in these depictions. Respectfully, how can Strong purport to “redefine our understanding” of something that he himself does not understand? 

Strong’s need to distill information is so extreme that Dr. Finnix is funneled into an OxyContin-self-prescribing-and-diverting-monster between the rolling of one set of credits and the opening of a new episode.

Strong’s MSNBC interview is hyperbolically backdropped by a hysterical graphic claiming over 760,000 overdose deaths — a conflated statistic that doesn’t distinguish what drugs caused the deaths. Was it OxyContin? Oxycodone? Hydrocodone? Heroin? Cocaine? Methamphetamine? Poly drug use?

Whether the deaths were due to illicit misuse, diverted pills or legitimate prescriptions is also ignored. We are only told by the reporter conducting the interview that, “OxyContin is the brand most people know.” Indeed. The opioid epidemic has become a cash-cow for misrepresentation.

MSNBC

It is important to note that pseudo-addiction is also mischaracterized in the Hulu series. It is used as a mechanism to accuse Purdue Pharma of encouraging irresponsible over-prescribing, when in fact it attends to patients in a state of severe “uncontrolled” pain. Uncontrolled pain is as devastating as it sounds, especially when we have means to treat it.

Once again, it is a concept that should be considered scientifically and medically, not simply as a harmful concept “invented” by Purdue for profit gains. Uncontrolled pain was not invented by Purdue at all, and has been studied from as early as 1989, before being expanded into the use of opioids for responsible pain management and becoming common amongst pain specialists for over three decades.

‘Selling Poison’

Dr. Finnix follows a similar path as the composite “addict” character, Betsy Mallum: from OxyContin use to chronic opioid abuse. He never moves to heroin, but he does buy OxyContin illicitly, while being schooled by a local drug dealer on how to get a faster high by crushing and snorting the pills through a straw.

It's not long before Finnix’s collapse is total. He has begun to behave uncharacteristically, beating his Purdue sales rep before manhandling him out of his office for “selling poison.”

The axe finally drops in a grizzly scene when Finnix is high during a surgical procedure. Then, while accompanying his now butchered patient to the ER, he complains to the attending doctor of rib-ache and requests OxyContin unabashedly. The doctor offers him a 10mg tablet, but Finnix ups the request to a 20mg pill in a manner that paints him as perhaps the most suspicious doctor-shopping-doctor imaginable.

The onus of representation for the addict group falls mostly on Betsy Mallum (Dever), who, when quizzed in an interview with Entertainment Weekly over the fact/fiction nature of her character replies: “Yes. She's a fictional character that represents a lot of people.”

Betsy is the first patient that Dr. Finnix turns into an addict. She receives the “First-Bottle” of OxyContin, to borrow Episode 1’s title, and uses the pain medicine to continue to work at the mines despite an excruciating work-related injury.

There are two points of note here: Finnix prescribes OxyContin to her with strict instructions for when to take the pills -- one in the morning and one at night -- which Betsy does. He also provides the appropriate advice of a rest period from her grueling work in the mines. He offers to go down and talk to management himself in order for the young woman be able to take a break to aid her physical healing. Betsy does not take his advice.

This is because of the important part the socioeconomic environment plays in Betsy’s crucial and unexamined predisposition toward addiction and substance abuse disorder. She knows how the mining industry works and that, in her father’s own account, she is the smallest "but strongest” one down there.

Betsy therefore has the obligation of needing both to retain her work: she’s a small-statured female and knows she is at high-risk for disposability in a shrinking industry, but she must also fulfill a need for validation from her domineering and deeply religious father. A father who would cast her out if she were to reveal her true self: her sexuality as a lesbian involved in a behind-closed-doors relationship with fellow mine worker, Grace.

This moves us on to a pivotal point. Even though Betsy is the recipient of the “first bottle,” she dumps her prescription by Episode 3, “The Fifth Vital Sign,” without tapering of any kind and without informing Dr. Finnix. Subsequently, she descends into a world of illicit diverted pills and eventually heroin. It is the latter drug that takes her life, the night before she is to enter a Suboxone treatment program and after a conversation with Grace, when she finds out that her first love can only be a friend moving forward.

Due to her addiction, Betsy never manages to make “enough money underground” to move to Grace’s Eureka Springs, Arkansas; a real place that Grace describes to Betsy as “Oz for country queers.” Devoid of hope after losing her first love, Betsy informs her flop house drug dealer that she is entering a Suboxone treatment center the following day. “So give me one hell of a sendoff,” she states as her final, fatal words.

The Fifth Vital Sign

To move beyond the episode’s sign-posting, the show depicts the medical community’s adoption of pain as the “Fifth Vital Sign” as a ploy to fuel over-prescribing. At the time the phrase was introduced, pain was vastly under-treated, there was a pressing need to bring attention to the unmet needs of chronic pain sufferers across the nation, and to facilitate dialogue between physicians and their patients to assess their pain levels and explore treatments — with opioids being just one — to increase their quality of life.

Introducing pain as a “vital sign” was an entirely reasonable pathway to take by the medical community. Although it is reasonable to argue that pain is not a vital sign in the way that breathing and heart beats are, it is nevertheless vital to assess pain.  But once again, it was not a Purdue “invention” as the show would usher you to believe, it was first discussed by Dr. James Campbell in an address to the American Pain Society in 1995. The term has faced some controversy, but it was well-intentioned.

What Macy failed to do in her mishaps over medical research in her book, which led to Strong’s OxyContin demonization, does not befit an analysis of the overdose death of Betsy Mallum. Per scientific examination, the pivotal 1998 CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) study used ten different measures of adverse childhood experiences, drawing the conclusion that that “for each traumatic event that happened to a child, they were two to four times more likely to grow up to be an addicted adult.”

The one we can outline as specific to Betsy is “parental rejection.” This is what she fears the most. When Betsy attempts to come out to her mother by stating that she “likes girls… always have… and not just as friends,” her words fall on deaf ears, with her mother quite literally pretending she didn’t hear the utterance: “Did you say something dear?”

It’s a statement Betsy’s mother later regrets, realizing its impact, but by then it is far too late. Finnix’s pre-OxyContin-addiction fishing trip during which he tries to irk Betsy’s rigid father into the enlightened mindset that being gay is not a sin but just a state of being, also misfires and leads to a demonizing, make-no-mistake style dinner scene.

Unable to live as her true self through fear of rejection and in the throes of withdrawal, Betsy burns the false-self: the one that is content sitting at home and knitting quilts with her in-denial mother.

When the news of her death is revealed, we see the camera focus on a picture of Betsy as a young child. This is also emblematic of denial; but this time not of the fictional Mallum family alone, but also of the filmmakers and Macy, who push for the narrative of the destruction of innocence via the opioid scourge.

Addiction’s Root Causes

The Mallum parents, through the zealot foisting of religion on a girl who “never believed in any of that stuff anyway,” did their daughter a deathly disservice. And they are more culpable for her death than Purdue Pharma or Dr. Finnix.

Betsy had a predisposition for substance abuse disorder, but Finnix did not. Although in Episode 4 we see him in a hallucinated waltz with his deceased wife, he seems content as a widower — although the dance scene does belie his underlying existential pain.

The filmmakers didn’t even throw in any trite backstory or anecdote of Finnix having an alcoholic father or brother — a detail that would barely be substantiating for predisposition per today’s medical rigor over addiction’s root causes. But it would have at least stimulated the viewer into questioning why this character had morphed so horrifically and so expressly.

The young Betsy, on the other hand, has a story of her own and one that would undeniably predispose her to substance abuse. Despite Strong’s claims, one must stick to individual stories to understand addiction, its roots, and the specific drugs that may come to fuel it.

By choosing to fictionalize via character composites, and by picking a “patient” so heavily predisposed to substance abuse disorder due to ACE and environmental factors, Dopesick doesn’t adequately represent the patient side of the doctor-patient relationship at all. The human element that is strong-armed into Finnix and Betsy is loaded for downfall, because that makes for good viewing.  One arc is devastating — Betsy’s — and Finnix’s is convoluted, although redemptive in the end.

Covering all bases in this fashion is hyper-unrealistic, difficult to digest, and self-serving on the part of the filmmakers in their need to enthrall their audience.

‘We Have Another Pharma Case’

There is another clandestine narrative at work in Dopesick. A prosecutor fights prostate cancer as he tries to bring Purdue to justice. After waking from a surgical procedure to remove the cancer, even while semi-conscious and in extreme post-surgical pain, he is aghast at the insistency of a nurse who tries to “force” OxyContin upon him. Heroically, he refuses and relays the tale back to his boss, who declares he made the “right choice” to fight the pain with the over-the-counter, non-narcotic Motrin.

What makes the parallel between the prosecutor and Finnix so powerful is that both characters moved from bigger towns to small West Virginian areas and both describe this life choice as the “best decision I ever made.”

The difference between the two characters is that good old Dr. Finnix, the responsible and attentive physician, falls prey to addiction almost immediately, while the representative of law enforcement holds strong.

Per the narrative of the “Iron Law of Prohibition” that this show peddles, representatives of the law must be invulnerable. The show pushes this weak theory clearly. After all, who could be more of a “drop out” than a physician, who is the biggest threat? It’s not the Sacklers, if we follow the human element, but prescribers.

This good/bad dichotomy is cemented in the last statement made by the chief prosecutor of his future plans: “We have another pharma case we’re looking into…” Tellingly, the drug company is not named, perhaps because it couldn’t be.

The fight for pharmaceutical anti-opioid justice is a good story and resonates with the public. But as a society, perhaps we should focus on addiction and its role in the human condition. Treating addiction, as opposed to distilling and misleading the public about its causes, might be a better way to slow the continuing rise of drug overdoses in America.

(Update: Dopesick won two Emmys, for outstanding lead actor and outstanding cinematography.)

Lynn R. Webster, MD, is Senior Fellow at the Center for U.S. Policy (CUSP) and Chief Medical Officer of PainScript. He also consults with the pharmaceutical industry. Lynn is the author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die.

Hazel Shahgholi is a senior editor and journalist based in New York City. Her most recent roles include Deputy Editor of amNY Metro, Editor in Chief of The Bronx Times, and Production Editor for MedPage Today.

Drug Tests Show Pain Patients on Opioids Less Likely to Use Illicit Drugs

By Pat Anson, PNN Editor

In an effort to reduce soaring rates of drug abuse and overdoses, many physicians have taken their pain patients off opioids and switched them to “safer” non-opioid drugs like pregabalin, gabapentin and duloxetine. Others have encouraged their patients to try non-pharmacological treatments, such as acupuncture, massage and meditation.

That strategy may be backfiring, according to a large new study by Millennium Health, which found that pain patients prescribed opioids are significantly less likely to use illicit drugs than pain patients not getting opioids.

The drug testing firm analyzed urine drug samples from 2019 to 2021 for nearly 55,000 patients being treated by U.S. pain management specialists. About 80% of the patients were prescribed an opioid like oxycodone or hydrocodone, while the other 20% were not prescribed opioids.

Millennium researchers say detectable levels of illicit fentanyl, heroin, methamphetamine and cocaine were far more likely to be found in the urine of non-opioid patients than those who were prescribed opioids. For example, illicit fentanyl was detected in 2.21% of the patients not getting an opioid, compared to 1.169% of those who were. The findings were similar for heroin, methamphetamine and cocaine.

“In all cases, we found that the population that was not prescribed an opioid was significantly more likely to be positive for an illicit drug than those patients who were prescribed opioids,” said lead author Penn Whitley, Director of Bioinformatics at Millennium. “(There was) a 40 to 60 percent increase in the likelihood of being positive if you were not prescribed an opioid.”

Illicit Drug Use By Pain Patients

MILLENNIUM HEALTH

What do the findings mean? Are pain patients getting ineffective non-opioid therapies so desperate for relief that they’re turning to illicit drugs? That’s possible, but the study doesn’t address that specifically.

Another possibility is that patients on opioids are simply being more cautious and careful about their drug use. Opioid prescribing in the U.S. has fallen by 48% over the past five years, with many patients being forcibly tapered or abandoned by doctors who feel pressured to reduce their prescribing.  

“Unfortunately, a lot of people with chronic pain have learned that it’s a bit tenuous, that their doctors are feeling pressure, and if they want to maintain their access (to opioids), they need their PDMP (Prescription Drug Monitoring Program) and their drug tests to look the way they need to look, so their doctor can feel comfortable continuing to prescribe,” said co-author Steven Passik, PhD, VP of Scientific Affairs and Head of Clinical Data Programs at Millennium. “I do think they realize that they’re on a treatment and that access to it is not guaranteed.”   

Preliminary findings from the study were released today at PainWeek, an annual conference for pain management providers. The findings mirror those from another Millennium study earlier this year, which found that pain patients have lower rates of illicit drug use than patients being treated by other providers.     

“If your main way of protecting people in pain from getting involved in substance abuse is to limit their access to opioids, there’s at least a hint here that’s not the right approach,” Passik told PNN. “It’s not a definitive statement by any stretch of the imagination, but it’s an approach to patient safety that leaves a bit to be desired.”  

Another recent study at the University of Texas also found that restricting access to opioids is “not a panacea” and may even lead to more overdoses.  Researchers found that in states that mandated PDMP use, opioid prescribing decreased as intended, but heroin overdose deaths rose 50 percent.

“Past research has shown that when facing restricted access to addictive substances, individuals simply seek out alternatives rather than limiting consumption,” said lead author Tongil Kim, PhD, an assistant professor of marketing at University of Texas at Dallas. “In our case, we measured overdose deaths as a proxy and found a substantial increase, suggesting that the policy unintentionally spurred greater substitution.”

My Renewed Fight for Disability

By Mia Maysack, PNN Columnist

There are millions of people who are figuratively standing in line, waiting to be granted benefits under Social Security Disability Insurance or SSDI. It usually begins with a person filing a disability application on their own behalf, declaring that they are unable to work, followed by the certification of medical professionals. They are the first baby steps in what can be a very long process. My application took four years before it was approved.

To get it, I represented myself in a court of law and essentially begged on my knees, pleading with detailed reasoning as to why my personal situation affects and at times strictly prohibits any version of what could be considered my working “ability,” let alone “normalcy.”

Not too long ago, I received a notice that a decision was to be made on whether or not I still live with a post-bacterial meningitis related traumatic brain injury that causes intractable and chronic mega-migraines, along with cluster headaches and nerve damage. I do, in case anybody was wondering.

But after two Social Security assigned medical reviews, it was declared that I am no longer disabled. News to me! The memo must have gotten lost because my body has yet to receive it.

Having worked since the age of 14, up until a few years ago, and only after pushing myself almost to the point of death, the disability checks I’ve been receiving consist of money I contributed to the taxpayer pot. I was grateful for it, knowing that many others have it worse in their own ways, even though the dollar amount is limited to covering a shelter over my forever hurting head.

The gift has been not to have to wrack my brain any further, figuring out where I can live. This has been a blessing, because I am then able to promote the full-time job that is self-care demanded by my ailments.

Constructing a non-mainstream path and not allowing challenges to completely dictate or entirely limit my overall quality of life does not lessen what I endure. Nor does it suggest having been cured or even improved.

It is generally understood that a governing “system” is in place to protect those of us who are not attempting to cheat or scheme to get disability. But let me tell you, our skeletal, muscular, nervous, endocrine, cardiovascular, lymphatic, respiratory, digestive, urinary and reproductive systems are continuously being violated and discriminated against by that very same “system.”  

The mourning of past lives and broken dreams is a permanent condition for me. The trauma of living and reliving what has transpired never ends. My symptoms are chronic and unpredictable, which inconveniences no one more so than it does me.

My body, my rights?  My ass.

Whether I can walk on the date of my upcoming appeal or have to crawl, I’ll fight however I can to make these points heard on behalf of everybody.           

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is also the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

CRPS Is a Bad Name for a Painful Disease

By Dr. Forest Tennant, PNN Columnist

A few years ago, the “pain powers” of the day decided to change the name of a mysterious painful disease called Reflex Sympathetic Dystrophy (RSD) to Complex Regional Pain Syndrome (CRPS). 

Not long after the name change, I received a telephone call from a reporter who mistakenly believed that “CRPS” meant that chronic pain statistics were now going to be kept by geographical regions.  He wanted to know which regions had the least and worst pain problems.  He sounded rather despondent when I informed him the regions weren’t geographic areas, but referred to parts of the body. 

After a sigh and pause, he asked how many regions there were and where they were located on the body.  I finally had to admit that although I was familiar with legs, arms, buttocks and ears, I hadn’t been able to come to grips with exactly what the body’s regions were or where they were located, as they weren’t mentioned in Gray’s Anatomy.  The reporter apologized for bothering me and said he thought he would focus on prostate issues instead.

Not long after I disappointed the reporter, I attempted to obtain a prior authorization to pay for CRPS medications from a patient’s insurance company.  I had mistakenly assumed that the label CRPS had reached the bowels of the insurance industry, but a grouchy lady on the phone informed me that her insurance company didn’t recognize regional pain and only paid for legitimate painful diseases.  Furthermore, she questioned my ability and sanity, accusing me of creating a fraudulent diagnosis.  At this point, I rightfully decided the CRPS label may have problems!

These episodes underline the point that lots of people with CRPS are being poorly treated due to a name that doesn’t even sound like a legitimate disease or disorder. Their very real illness goes unrecognized and payment for treatment is often denied by their insurance.  At best, the CRPS label trivializes a condition that can be so severe as to force a person into bed, endure great suffering, and die before their time. 

The history of the name CRPS is most telling.  A British surgeon named Alexander Denmark wrote the first known description of a disease like CRPS in about 1812.  He described a soldier injured by a bullet this way:

“I always found him with the forearm bent and in supine position and supported by the firm grasp of the other hand. The pain was of a burning nature, and so violent as to cause a continual perspiration from his face.” 

Another physician who was working with wounded Civil War soldiers, Dr. Silas Weir Mitchell, published his findings in a 1864 monograph entitled “Gunshot Wounds and Other Injuries.” Mitchell described the basic injury as burning pain located in close proximity to the battle wound.  He also described the well-known characteristics of the disorder, including glossy red or mottled skin without hair, atrophic tissue, and severe pain caused by touch or movement. 

In his 1872 book, “Injuries of Nerves and Their Consequences,” Mitchell coined the term “causalgia” which he derived from the ancient Greek words kauaoc (heat) and oayoc (pain) to emphasize the nature of the disorder.

The term causalgia remained in place until about 1946, when Dr. James Evans, a physician at the Lahey Clinic in Burlington, Massachusetts, described 57 patients with injuries similar to those labeled causalgia by Dr. Mitchell.  Evans described his patients as having intense pain and clinical signs that he explained as being due to “sympathetic stimulation.” The patients experienced rubor (redness), pallor, and a mixture of both sweating and atrophy.

This syndrome would appear after fractures, sprains, vascular complications, amputations, arthritis, lacerations, or even minor injuries.  Evans found that sympathetic nerve blocks usually relieved the pain, so he rejected the term causalgia and gave it the name Reflex Sympathetic Dystrophy (RSD).

The name RSD pretty well replaced causalgia until 1994, when the International Association for the Study of Pain (IASP) changed it to Complex Regional Pain Syndrome (CRPS).  This change was led by the renowned pain specialist John Bonica, MD, who wanted to shift the focus away from the terms dystrophy, reflex and sympathetic back to pain. 

This argument for the change had validity, in that the condition doesn’t really have a reflex component and sympathetic blockades do not consistently relieve pain.  Also, dystrophy is medically defined as tissue degeneration, such as that caused by diseases of nutrition or metabolism. The IASP wanted the primary focus to be on pain.

Unintended Consequences

While the name changes from causalgia to RSD to CRPS were intended to bring better pain relief to needy patients, there have been several unintended consequences.  In fact, a reasonable argument can be made that the name change has been counterproductive. 

What should CRPS now be called?  It’s doubtful that a new consensus could be quickly developed, as the syndrome is complex and involves multiple issues. 

Frankly, I personally believe we should junk the term CRPS. It trivializes a most serious disorder, and I have found use of the name CRPS actually deprives some patients of the treatment they need.  I have often simply used the term “vascular neuropathy” to effectively educate pharmacies, families, insurance companies and patients about the condition.  At least this term sounds legitimate and serious!

Fortunately, regardless of its name, the syndrome appears to be diminishing both in incidence and severity.  Workplace injuries and vehicular accidents get immediate attention these days, while early medical and physical interventions usually prevent great severity. 

Also, there is now an understanding of centralized pain and its electrical discharges, which are greatly responsible for the so-called “sympathetic” symptoms of the disorder.  Treatments for centralized pain are clearly benefitting persons with this unfortunate disorder, regardless of whatever name you wish to call it.  I would call for a name change but I don’t know who to call!

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

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

A Pained Life: We’re Not ‘Normal’ So Don't Expect Us To Be

By Carol Levy, PNN Columnist

I recently contacted a local social service agency for help. They sent a social worker and wonderful lady, Margaret, to come to my home.

The first thing she did was a “depression inventory,” a questionnaire required by the service. The questions were pro forma, and if I was a “normal person” were probably an appropriate way to see if I was suffering from depression. For someone in chronic pain, not so much.

Margaret asked me, “Are you basically satisfied with your life?”

The choices were “Yes” or “No.” The questionnaire allowed for no other answer.

No, I am not satisfied with my life. I am mostly housebound, due to trigeminal neuralgia pain and the fear of triggering more pain if I go out. My reasons for being dissatisfied with my life are legitimate. It is not a sign of depression, but of my reality.

“Have you dropped many of your activities and interests?” Margaret asked. Yes, if you mean since the pain started 40 years ago. If you mean more recently, then the answer is no.

“Do you often get bored?” Of course, I do. I am home most of the time. My eye pain interferes with reading, writing or even watching a movie if there is a lot of movement on the screen. I spend a lot of time with the TV on, as background noise, and sitting in a chair or bed waiting for the hour hand to move so the day is closer to its end.

That sounds like depression. But for me, it's not. It's merely my life.

“Were my spirits good?” Easy answer. See the above.

My neurosurgeon told me there are no more treatments or surgical possibilities for me. They all have unknown risks and it’s not certain they would help. So, when I was asked, “Do you feel helpless?” and “Do you feel hopeless?'” my answer was yes to both questions. Because my situation is hopeless and helpless. The medical profession has told me so.

Margaret’s next question; “Do you prefer to stay at home rather than go out and do new things?” could have been two questions for me: "Do you prefer to stay at home?' No, I don't. "Would you prefer to be able to go out and do new things?" Yes, I would, but the pain won't let me.. 

“Do you think most people are better off than you?” was the last question. And the hardest for me to answer. In one sense, yes, because most people don't have chronic pain and they're not housebound. But I am in good shape physically, absent the eye and face pain, and my brain and mind work well. I am independent. So no, they are not better off than me. 

It all depends on the slant of the questions and the slant of the answers. 

Most of Margaret’s questions are not intended for people in pain. I don't expect them to make ones specific for the pain community and I'm not sure, given the spectrum of chronic pain and disability, if that is even feasible.  

We need to be seen for what we are. We are not “normal,” so please stop expecting that of us. 

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.