Medicaid Expansion Did Not Fuel Opioid Crisis

By Pat Anson, PNN Editor

A new study is debunking claims that increased access to healthcare and pain management helped to fuel the opioid crisis. If anything, the opposite appears to be the case.

The study, published in the Journal of General Internal Medicine, found that early Medicaid expansions in Arizona, Maine and New York may have led to lower overdose rates in those states.

"These findings suggest that Medicaid expansions were unlikely to have contributed to the subsequent rise in drug overdose deaths, and may even have been protective," said lead author Atheendar Venkataramani, MD, PhD, an assistant professor of Medical Ethics and Health Policy at the Perelman School of Medicine at the University of Pennsylvania.

Venkataramani and co-author Paula Chatterjee, MD, looked at state-level data on drug overdoses from 1999 to 2008, comparing overdose mortality rates in the three Medicaid-expansion states to those in other states.

By 2008, Arizona, Maine and New York had about 7 fewer overdose deaths per 100,000 people compared to the other 47 states.

The differences were even greater when the three states were only compared to adjacent states: They had 17 fewer deaths per 100,000 people.

Overall, the study suggests that drug overdose deaths were nearly 20 percent lower in the early expansion states.

"The results should provide reassurance to policymakers who are concerned that state Medicaid expansions, including the recent expansions implemented as part of the Affordable Care Act, promote rises in drug overdose mortality," said Venkataramani.

The Affordable Care Act (ACA) – widely known as Obamacare – greatly expanded Medicaid coverage for millions of poor Americans, starting in 2014. But some critics have claimed the ACA made the opioid crisis worse by giving patients easier access to opioids.

“The Medicaid expansion may be fueling the opioid epidemic in communities across the country,” Wisconsin Sen. Ron Johnson (R) wrote in a 2017 letter to the Health and Human Services inspector general. “Because opioids are so available and inexpensive through Medicaid, it appears that the program has created a perverse incentive for people to use opioids, sell them for large profits and stay hooked.”

The Penn Medicine study wasn't designed to determine why Medicaid expansion appeared to lower overdose death rates in New York, Arizona and Maine. But it does suggest that better access to healthcare was a factor.

“Improving people’s access to health care could have a number of effects. It may be that people had better access to substance use disorder treatment or better access to mental health or pain management. Or it may be that providing health insurance reduced the risk of financial ruin, which helped downward socioeconomic spirals that could lead to substance use disorder,” Venkataramani wrote in an email to PNN.

“If Medicaid expansions did increase access to opioids, then the effect of doing so was far outweighed by other forces that actually reduced mortality rates from drug use order. The mechanisms again are not known because of data limitations in this study, but access to regular health care, access to substance use disorder treatment, and improved socioeconomic circumstances all may have contributed to the slower growth in drug overdose mortality in Medicaid expansion states.”

The Affordable Care Act expanded Medicaid coverage to about 12 million Americans in the 31 states and the District of Columbia that opted to receive it. A recent study found that opioid prescriptions decreased slightly in those states, while prescriptions for addiction treatment drugs like Suboxone rose significantly.

Does Coffee Reduce Your Pain?

By Steve Weakley

Saturday, September 29th is National Coffee Day, so drink up! A new study shows that caffeine can be an effective pain reliever.

Researchers at the University of Alabama at Birmingham (UAB) reported in the journal Psychopharmacology that regularly consuming caffeine can make a noticeable difference in your ability to withstand pain.  The study involved 62 healthy men and women, who shared with researchers their caffeine consumption from coffee, tea, soda, energy drinks and chocolate over seven days.

The group averaged 170 milligrams of caffeine a day, about the same as two cups of coffee.  Fifteen percent of the group consumed more than 400 milligrams a day and one participant drank the equivalent of 6.5 cups of coffee daily.

After a week, the volunteers were subjected to painful heat and pressure tests in a laboratory. Researchers discovered that people who regularly consumed caffeine significantly reduced their sensitivity to pain. The more caffeine they consumed, the lower their sensitivity.

“Diet can actually be a useful intervention for decreasing pain sensitivity,” said lead author, Burel Goodin, PhD, an associate professor of psychology at UAB. “It’s not just caffeine. A study has shown, for example, that a plant-based diet can actually help increase pain tolerance.”

Researchers say caffeine reduces pain by blocking receptors in the brain called adenosines, which enhances the effect of dopamine chemicals associated with pain relief.  

Caffeine has been added to over-the-counter pain relievers like Excedrin for years, and has been shown to increase their effectiveness by as much as 40 percent.  South Korean researchers have also added caffeine to the opioid medication of patients with advanced cancer and found that it decreased their pain and improved alertness.

Other research has corroborated the effectiveness of caffeine alone as a pain reliever.  A University of Georgia study revealed that two cups of coffee can reduce post workout pain by nearly half.  And a study at the University of Pittsburgh found that a single 200mg tablet of caffeine was effective in treating muscle pain.

Excessive caffeine consumption can have serious side effects, but the Mayo Clinic says 400mg per day is a safe dosage (about 4 cups of coffee). A few cups could be a useful addition to your pain treatment regimen.

FDA Approves Third Injectable Migraine Drug

By Pat Anson, PNN Editor

Migraine sufferers will soon have another treatment option. Eli Lilly has announced that the U.S. Food and Drug Administration has approved Emgality (galcanezumab), a monthly self-injected drug for the prevention of migraine in adults.

Emgality is the third injectable migraine drug the FDA has approved this year. In May, the agency gave approval to Amgen’s Aimovig (erenumab), the first migraine drug that uses fully human monoclonal antibodies to target receptors in the brain where migraines are thought to originate.  Last week, the FDA approved Teva’s Ajovy, a migraine prevention drug that can be injected monthly or quarterly.

Lilly said the efficacy and safety of Emgality was demonstrated in three Phase 3 clinical trials in patients with episodic or chronic migraine.

Emgality reduced the number of monthly migraine headache days by an average of 4.7 days in patients with episodic migraine and by 4.8 days in patients with chronic migraine.  

Migraine affects a billion people worldwide and about 36 million adults in the United States, according to the American Migraine Foundation. In addition to headache pain and nausea, migraine can cause vomiting, blurriness or visual disturbances, as well as sensitivity to light and sound. Women are three times more likely to suffer from migraine than men.

“Despite the devastating impact of migraine, only about 10 percent of people living with the disease are currently taking a preventive treatment,” Christi Shaw, president of Lilly Bio-Medicines, said in a statement. “With this approval, we are thrilled to offer a preventive treatment option to adults living with this disease.”

Lilly said Emgality would be available “shortly” at a listed price of $575 for a single injection or $6,900 annually. That introductory price is identical to that of Aimovig and Ajovy, although various discounts or rebates could make the cost lower. Lilly said it would offer Emgality for up to 12 months free to patients with commercial insurance under its patient assistance program.   

“We know the impact high deductible and rising out-of-pocket costs have on families, and Lilly takes seriously our role in ensuring affordable access to Emgality for as many patients as possible,” said Shaw.

Earlier this month, the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use issued a positive opinion of Emgality for the prevention of migraine in adults who have at least four migraine days per month. That positive opinion was referred for final action to the European Commission, which grants drug approval in the European Union.

Lessons from ‘Prescription Drug Diversion and Pain’

By Roger Chriss, PNN Columnist

The new book "Prescription Drug Diversion and Pain" is a textbook treatment of pain management and drug policy amid the opioid crisis. Written and edited by experts, the book is a scholarly, rigorous and evenhanded examination of the benefits and burdens of opioid pain medication.

Each chapter is written by specialists who address a particular aspect of the opioid crisis, with extensive footnotes justifying every statistic and claim. Much of that data, however, is admittedly flawed.

“As we show in this book, essential data about opioid abuse, morbidity, and mortality are lacking and what little data we have are derived from flawed and obsolete government databases,” the authors note in the preface.

“Yet, these resources are relied upon for public policy development, resource allocation, and lawmaking. In the absence of sound data, ingrained cultural feelings about addiction can become a powerful driver of attitudes, even among pain specialists who, despite their professional training and experience, may be influenced by such bias in their prescribing practices.”

The first chapters look at the history, regulation and monitoring of opioid prescriptions, and attempts to defuse the bias often associated with them:

"These medications are neither good nor bad absent context, despite the public tendency to oversimplify their use and mischaracterize their utility."

The origins of the opioid crisis are given due consideration. Rising rates of opioid prescribing are recognized as one factor, but drug diversion in the supply chain is also acknowledged:

“There is evidence that thefts from hospital and pharmacy drug supplies, as well as in-transit thefts from manufacturers and distributors, may also be a significant source of diverted opioids.”

Close attention is given to the issue of overprescribing and doctors who are “careless, corrupt, and compromised by impairment.”

But the book is also critical of the theory – expounded by the CDC opioid guideline – that reducing the number of prescriptions will help solve the opioid crisis:

“One might expect… that a decline in sales would produce a corresponding decline in overdose deaths. This has not occurred, casting doubt on the CDC’s original hypothesis. Several explanations are possible for this and may involve the recent increase in the use of street opioids like heroin and fentanyl analogs.

“Government databases for tracking nonmedical drug use and related health consequences are obsolete and lack the sensitivity to show which drugs, by chemical name and product formulation, licit or illicit, are responsible for the increasing overdose deaths.”

Later chapters explore opioid prescribing in detail and echo many of the themes of the CDC guideline:

“Not every patient who complains of pain needs an opioid or is a candidate for opioid therapy. Opioids should be prescribed only when the benefit outweighs the risks. Functional improvement should be a primary goal, along with improved sleep and mood, regardless of the therapy used.”

Indeed, the book goes to great lengths to discuss the risks associated with long-term opioid therapy, not just addiction but endocrinopathy, sedation, delirium, and bone loss. Many alternatives, from non-steroidal anti-inflammatory drugs and tricyclic antidepressants to cognitive-behavioral therapy (CBT) and acceptance and commitment therapy (ACT) are also described in detail.

The book laments the loss of interdisciplinary pain management programs, starting in the 1980s. These programs provided “a safer and clinically more effective alternative to opioids [and] have also been empirically associated with reducing patients’ reliance on opioids.” But the programs were costly to insurers and not profitable for medical facilities. Their disappearance “should be considered a contributory factor in the crisis of diversion and abuse and the associated destruction of lives.”

The book challenges areas of pain management and prescribing practice. A whole chapter is given over to the subject of urine drug testing, which is described as “an important element of an overall opioid-compliance program.” Because misuse of prescription drugs and use of illicit drugs is not uncommon among chronic pain patients, such monitoring is recommended. But the book cautions: “Other clinical indicators are needed before determining if a patient is nonadherent.”

The book concludes with its key idea, that there are no easy solutions:

"Given the complexity of the practice of pain management, the ‘opioid crisis’ cannot be solved, nor can conditions for pain patients be improved, using only simple and direct approaches: one medication, one regulatory policy, one law, or one injection will not be the answer for our chronic pain patients.

The government’s crackdown on drug companies and others in the pharmaceutical industry has had a negligible effect on reducing the morbidity and mortality resulting from the abuse of opioids.”

In other words, the opioid crisis and pain management are sufficiently complex that simple approaches are bound to fail. We need smart approaches. This book does an excellent job outlining the current state of knowledge to inform such approaches.

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

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

The New Cruelty Rolls On

(Editor’s note: Rob Hale is a 52-year old Missouri man who lives with late-stage Ankylosing Spondylitis, a degenerative and incurable form of arthritis. We’ve written before about Rob and his difficulty in getting opioid pain medication – what he calls the “New Cruelty.”)

By Rob Hale, Guest Columnist

I’m here to talk about what happens when someone like me, who already is criminally undermedicated, gets seriously injured and must deal with the new procedures for treating chronic pain patients.

On August 16th of this year, I slipped and fell, breaking my neck.  I know, I know – bad idea. 

When I was brought into the hospital, they immediately hit me up with a dose of Narcan (naloxone), a drug used to reverse opioid overdoses. Narcan takes all the opiates out of your system in about 20 minutes, so you can feel every last iota of pain in your body. You also get to go through about a week’s worth of withdrawal pains in just under a half hour. Narcan is now standard operating procedure for any patient who comes into the ER with any form of opiate/opioid in his or her system. 

Anyway, back to the fun.  I was drifting in and out of consciousness due to the pain, while they took x-rays and CT scans of my neck. It turned out that I had a minor fracture, so they decided it was time to slit me from my skull to my mid back and put two, 12-inch titanium rods and 13 fittings and screws into my spine. 

I vaguely remember agreeing to this and putting my ‘X’ on some sheet of paper saying they could do it.  One thing I do remember clearly is I made damned sure that once the surgery was over and I was sent home, that I was going to get at least 6 and probably 12 days’ worth of pain medication.  I was assured of this not only by the neurosurgeon, but by all the interns and nurses who were attending me. 

I only spent 4 days in the ICU recovering from this nightmare of a surgery when they told me I was ready to go home!  I was shocked since they had just removed the wound drains that very day.  

But I really did want to get home and see my dog and my family, so I thought, “Okay, they must know what they’re doing, right?” 

I want you to guess what happens next, kids!

You guessed it – they were finishing up my discharge papers and I asked about my scripts.  They said that because I already had a pain management doctor, that is was up to him to provide me with the meds that I would need to recover from the surgery.  I explained, just as I had before the surgery, that my pain doctor was not going to be able to see me for several weeks, because his primary clinic is three hours away in Park City, Kansas and he is only in Kansas City one week out of the month.  Of course, I called him and begged for help, but to no avail. 

While I was recovering in the hospital, I was getting long-acting morphine 3x daily, plus immediate release oxycodone every 4 hours.  When I was released from the hospital, they gave me oxycodone to take every 6 hours, and no long acting morphine at all. 

Within 3 or 4 days, I lost the ability to use my right leg at all.  Having no other medication, nor any other recourse, I decided to use some of the methadone that I had left over from my last palliative care doctor. Unfortunately, it was about 10 years old.  But what was I to do?  It was that or hit the streets and try to get some illegal medication, which might have killed me since that crap is often loaded with illicit fentanyl. 

I was very careful to keep track of what I was taking, but I am guessing the methadone had gone bad, because I had a serious reaction to it and my dad called in the paramedics again. 

So, it was back to the hospital for me! Four days in ICU and 5 days in a semi-private room with a roommate who had pneumococcal pneumonia and a toilet that didn’t work, before I was  transferred to a nice, private room.  Only 2 days there, before they sent me over to a physical therapy facility across the street, where they tried to get my leg to work. 

All the doctors there were totally on board with the New Cruelty.  One actually told me that people who took more than 90 MME (morphine milligram equivalent) were at a much higher risk of death! It’s amazing to me how quickly they have disseminated this propaganda, and how completely the new generation of doctors have accepted it as the truth! 

This nonsense has gone on for years and I am becoming more and more despondent with this opioidphobic world. If you know me, you know that I live with chronic pain.  Not just any old pain, mind you – it’s really bad.  I have Ankylosing Spondylitis in its most advanced form, which more or less means that my spine, neck and sacroiliac are completely fused.  This has caused me daily intractable pain. I’m talking about pain that would drop the average person to his or her knees, praying to God to take their lives away just so the pain would stop. 

Adequate Care Phase

I am not attempting to elicit sympathy. It does nothing to ease the unending, merciless, wicked, 9 out of 10 pain that I live with day in and day out, 7 days a week, and 365 days a damned year. 

For many years, my pain was well controlled with morphine and hydromorphone. I was taking over 1,000 MME a day and never felt better in my life.  During this time, which I like to call my “adequate care phase,” which lasted almost 12 years, I never misused my medications and even went so far as to keep a journal listing every single pill that I took. My palliative care doctor can back me up on this. He was very surprised yet pleased to see how carefully I was using these drugs and how much respect I had for them.  I knew they were potentially deadly and dangerous, but while I was taking them – exactly as prescribed – I was every bit as lucid and well-spoken as I am right now. 

You see, when you have extreme amounts of pain, opioids go straight to the pain – they do NOT cause any type of high or euphoria.  I was able to participate in family functions, help around the house and assist my aging parents -- in short, to live a semi-normal, quasi-productive life.  I even opened my own little guitar shop out of my house, to make a little money to supplement my rather meager social security disability income. 

Then came the New Cruelty, in the form of a supposedly voluntary set of opioid guidelines from the CDC — or as I like to call them, the medical Gestapo.  According to the CDC, I was at high risk of overdose for over a decade because I was taking over 90 MME.

We are now at the mercy of a medical industrial complex that – in collusion with insurance companies and psycho-sociopaths in Congress – have created a fear-based campaign that they have dubbed the “opioid epidemic’ or “opiate crisis.” I firmly believe that chronic pain patients are being targeted for death by this campaign, either by our own hands or by medical complications that result from being woefully undermedicated. 

Rob Hale lives in Kansas City, MO. He was diagnosed with Ankylosing Spondylitis at the age of 27.

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

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

Coke Considering Cannabis Drinks

By Pat Anson, PNN Editor

These are heady times in the beverage industry, with dozens of companies introducing cannabis-based drinks – from sparkling water to herbal teas to cold brew coffee. After decades of being ostracized on Main Street and Wall Street, marijuana is suddenly trendy.

The largest beverage company in the world – Coca-Cola -- is even thinking about entering the rapidly growing cannabis market. According to BNN Bloomberg, Coke is in serious talks with Aurora Cannabis of Canada to develop a cannabis-infused beverage that would be marketed as a “recovery drink” that eases inflammation, pain and muscle cramps.  

It’s not clear if Coke is interested in a joint venture with Aurora or if it would buy a stake in the Edmonton-based company. Coke said it would not comment on “speculation.”

“We have no interest in marijuana or cannabis. Along with many others in the beverage industry, we are closely watching the growth of non-psychoactive CBD as an ingredient in functional wellness beverages around the world. The space is evolving quickly. No decisions have been made at this time,” Coke said in a statement.

Could a CBD-infused drink provide pain relief? Marijuana researcher Yasmin Hurd, PhD, told NBC News it's unlikely that a beverage made with CBD could have health benefits because a high dose of about 200 milligrams is needed to be effective.

“CBD gets broken down and metabolized quickly in the body,” said Hurd, who is director of the Addiction Institute at Mount Sinai Hospital. “The amount that would get in the bloodstream from a drink would not have an effect.”

The efficacy of CBD-infused drinks may not be proven, but the potential profits are. According to a new report by Ameri Research, the global medical cannabis market was valued at $8.9 billion in 2016 and is projected to grow to nearly $33 billion by 2024.

Twenty-eight U.S. states currently allow the sale of medical marijuana, while 9 states allow recreational sales. Marijuana is still illegal at the federal level, but products made from cannabidiol (CBD) – the non-psychoactive ingredient in marijuana – are being sold in all 50 states.

Canada already permits medical usage and next month recreational use will be legalized nationwide. Because of that, several beverage makers besides Coke are interested in partnering with Canadian cannabis companies.

Last month, Corona beer brewer Constellation Brands announced it would spend $3.8 billion to increase its stake in Canopy Growth, a Canadian marijuana producer. Molson Coors Brewing is starting a joint venture to develop cannabis drinks in Canada. And Heineken has launched a craft-brew label specializing in non-alcoholic drinks infused with THC, the psychoactive ingredient in marijuana.

“Interest has spiked from the beer industry on mounting evidence of a substitution relationship between cannabis and alcohol, while large soda companies increasingly view CBD as a natural fit within their strategically important wellness offerings,” wrote Canaccord Genuity analyst Bobby Burleson in a research note.

Canaccord projects that CBD and THC infused drinks could become a $600 million market in the U.S. within the next four years.

“Medical and wellness benefits include suppression of seizures, pain relief, reduction of anxiety and a host of other therapeutic effects,” said Burleson. “We note that that the medical benefits of CBD have recently been bolstered by the FDA’s approval of Epidiolex, a CBD based drug developed to treat epilepsy. It follows that CBD also offers significant potential as the basis for a wellness beverage.”

Tennessee’s ‘Absolutely Crazy’ Opioid Law

By Pat Anson, PNN Editor, and Blake Farmer, Nashville Public Radio

Since the CDC released its opioid guideline in 2016, over 30 states have passed legislation that limit opioid prescriptions in some way. Most limit the supply to a few days for initial opioid prescriptions and some set limits on the doses that doctors can prescribe.

Which state has the toughest opioid regulations?

“Tennessee is just absolutely crazy,” says Bob Twillman, PhD, Executive Director of the Academy of Integrative Pain Management.

Twillman is referring to a strict and complicated state law that took effect in July that restricts how long Tennessee doctors can prescribe opioids to patients.

“Depending on what you document and depending on your judgement of what’s going on with the patient, you’re either limited to a 3-day supply, a 10-day supply, a 21-day supply or a 30-day supply of an opioid,” Twillman told PNN.

“You wonder how in the world they’re ever going to police this. If it’s a particularly severe case you could do a 21-day supply, but if it’s a rare case then you can do a 30-day supply. What is the difference?”

Tennessee also limits the dose that doctors prescribe, under a complicated formula that lowers the allowable dose the longer a prescription lasts. In other words, you may get more pills but the dose will be smaller.

Any “significant deviation” from Tennessee’s opioid law could result in disciplinary action for a doctor not showing “sound medical judgment.” First offenders could be banned from prescribing opioids for five years.

“They’ve left us saying make your own best judgement and document the reason for it and cross your fingers and hope you’re going to be okay,” says Twillman.

Some doctors have decided not to take that risk. Many primary care providers in Tennessee have stopped prescribing opioids and are referring patients to the state’s dwindling supply of pain clinics, where waiting lists are long and there’s no guarantee a new patient will even be able to get treatment.

Insurers Drop OxyContin

But it’s not just legislation that limits how pain patients are being treated in Tennessee. Insurance companies are refusing to pay for some opioids.

The largest insurer in Tennessee recently announced it will no longer cover prescriptions for OxyContin, what was once a blockbuster pain reliever. It’s the latest insurance company to turn against OxyContin, whose maker, Purdue Pharma, faces dozens of lawsuits related to its high-pressure sales tactics around the country and contribution to the opioid crisis. Last fall, Cigna and Florida Blue both dropped coverage of the drug.

Top officials at BlueCross BlueShield of Tennessee (BCBST) say newer abuse-deterrent opioids work better than OxyContin, and starting in January, the insurer covering 3.5 million Tennesseans will only pay for opioids made by other pharmaceutical companies.

“We felt it was time to move to those products and remove Oxycontin from the formulary, which does still continue to have a higher street value,” said Natalie Tate, the insurer’s vice president of pharmacy.

OxyContin was reformulated in 2010 to make the drug harder to misuse — but it’s still possible to crush or liquefy in order to snort or inject it.

The latest long-acting opioids that BlueCross BlueShield of Tennessee is going to start covering — Xtampza and Morphabond — are still more difficult to misuse, according to the company and some pharmaceutical experts.

Practicing pain physicians in Tennessee — who regularly battle with insurance companies —  approve of the change, though they said OxyContin was already falling out of favor. And they argue trading one opioid for slightly safer ones doesn’t address a larger gripe that physicians have with insurers over paying for other, non-addictive types of treatment.

“We will have denials and prior authorizations on a muscle relaxer, and we will have no issue getting an opioid through the insurance company,” said Dr. Stephanie Vanterpool, an anesthesiologist at the University of Tennessee and the president-elect of the Tennessee Pain Society.

“The physicians or the doctor’s offices jump through hoops to get the better medication for the patients,” said Vanterpool. “And when I say better medication, I mean the medication that’s treating the cause of the pain, not just the medication that’s covering up the pain.”

Not to say OxyContin won’t be sorely missed by some patients.

“There are plenty of people who benefit from that drug,” said Terri Lewis, a patient advocate and rehabilitation specialist from Cookeville, Tenn.

Lewis is suspicious of BCBST’s motives since the insurer may be blamed for its role in the opioid crisis. Embattled Purdue Pharma could also be a convenient scapegoat.

“Maybe this is a good decision,” Lewis said. “But it smells like a political decision.”

This would be just the latest decision inserting politics into a nuanced medical problem that affects millions of pain patients.

John Venable of Kingsport, Tenn., was shown the door by his pain clinic in July after more than a decade on oxycodone — a generic, short-acting version of OxyContin.

“I just felt like I was in a hopeless state, like, ‘there is no help for John,'” he recalled.

At their worst, he said his headaches get so debilitating “that death would be a relief.” Despite his dread, he’s noticed something surprising over the last few months without opioids — his crippling headaches haven’t gotten that much worse, if at all.

“It very well might be a blessing in disguise,” Venable said.

The retired builder and one-time pastor said he prays that those losing OxyContin also will get to use the moment as an opportunity, though he knows many can’t cut ties with opioids. And he worries some will turn to more dangerous drugs off the street or even contemplate ending their own lives.

Experts point out that the number of opioid prescriptions has already been falling around the country. And in Tennessee, BCBS has experienced a 26 percent drop in opioid prescription claims over three years.

But restricting legal access to opioids hasn’t turned back the rise in overdose deaths, which hit a record in Tennessee and nationwide last year.

This story is part of a partnership that includes Nashville Public Radio, NPR and Kaiser Health News.

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

Lyrica Not Effective for Treating Traumatic Nerve Pain

By Pat Anson, Editor

Pregabalin is not effective in relieving chronic pain caused by traumatic nerve injury, but it may be useful as an analgesic in treating pain after surgery, according to a new study published in the Journal of Neurology.

The placebo-controlled study followed 539 patients in North America, Europe, Africa and Asia for three months. About half had nerve pain after surgery, while the rest had nerve pain after an accident or trauma.

Researchers found that pregabalin was not an effective pain reliever for the patients with traumatic nerve injuries, but the drug did provide better pain relief than placebo for the surgery patients.

"While these finding show that pregabalin is not effective in controlling the long-term pain for traumatic injury, it may provide relief for patients (that) experience post-surgical pain," said lead author John Markman, MD, director of the Translational Pain Research Program in the University of Rochester Department of Neurosurgery.

"The possibility that there was pain relief for those patients who had a hernia repair, or breast surgery for cancer, or a joint replacement lays the groundwork for future studies in these post-surgical syndromes where there is so much need for non-opioid treatments."

Pregabalin, which is sold by Pfizer under the brand name Lyrica, is FDA-approved for the treatment of chronic pain associated with shingles, spinal cord injury, fibromyalgia, and diabetic peripheral neuropathy.

It is also commonly prescribed as an "off label" treatment for other types of chronic pain and as an alternative to opioid medication.

A major challenge for doctors is that biological changes in nerves and other tissues while healing from surgery or trauma vary from one patient to the next. There is also no diagnostic method that allows doctors to identify which patients will respond to a particular type of pain treatment.

"Given the rising rates of surgery and shrinking reliance on opioids, it is critical that we understand how to study new drugs that work differently in patients like the ones included in this study," Markman added.

While critics often say there is little or no evidence to support the long-term use of opioids, the same is true for other types of pain medication, including pregabalin. Nevertheless, in its guideline for opioids, the Centers for Disease Control and Prevention recommends pregabalin and its chemical cousin gabapentin as alternatives for treating chronic pain – without even mentioning their side effects or potential for abuse.

Pregabalin and gabapentin belong to a class of nerve medication called gabapentinoids, which were originally developed to treat epilepsy, not pain. In recent, deaths involving gabapentinoids have increased in the UK, Australia and Canada, where some addicts have learned the drugs can heighten the euphoric effect of heroin and other opioids.

The use of pregabalin and gabapentin has tripled in the U.S. over the past decade, but health officials have only recently started looking into their misuse and abuse. While gabapentin has a warning label cautioning users who take the drug with opioids, there is no similar warning for pregabalin.

Study Finds Cannabis Increases Pain Tolerance

By Steve Weakley

Medical marijuana is often touted as a promising new form of pain relief.  But a new study found that cannabinoids may not reduce pain as much as they increase our tolerance of pain and make it less unpleasant.

Researchers at Syracuse University conducted a systematic review of 18 placebo-controlled studies involving nearly 450 participants who used a wide variety of cannabis products, including plant-based marijuana and two synthetic marijuana-based drugs, dronabinol and nabilone.

Because most previous cannabis studies have only examined patients with chronic pain, which is often associated with depression, anxiety and other symptoms that could bias results, the researchers only selected studies that used healthy individuals and laboratory tests that induced “experimental” pain.  

They reported in the journal JAMA Psychiatry that cannabinoids did not reduce pain intensity, but made the experimental pain “feel less unpleasant and more tolerable.”

"If you think of pain as a noxious sound coming from a radio, the volume is the intensity of that pain," researcher Martin De Vita told MedPage Today. "After using cannabinoid drugs, it may not decrease the volume of the noxious noise, but it may tune it to a station that's a little less unpleasant. It won't be the most beautiful music you've ever heard -- it will still be pain -- but it will be a little less unpleasant.”

Researchers found that relatively high cannabinoid dosages improved pain tolerance, but low doses had little or no effect.  The plant-based marijuana was also more effective at reducing pain than the synthetic pharmaceuticals drugs, which are primarily used to prevent nausea.

De Vita says findings from the 18 placebo-controlled studies are somewhat compromised because patients getting the plant-based cannabis “felt high,” while those getting placebo did not. He said future studies need to test non-psychoactive cannabinoids like cannabidiol, which do not have tetrahydrocannabinol (THC), the substance in marijuana that causes euphoria.

"Everyone is saying we need more research and that we need to catch up," De Vita said. "This is a first step in doing that, starting from the fundamentals of how cannabinoids affect basic pain processes, and now we need to determine some of these follow-up questions." 

This is not the first study to get mixed results on the effectiveness of cannabis in treating pain. A recent Australian study of over 1,500 adults with chronic pain, published in The Lancet Public Health, found "no evidence that cannabis use improved patient outcomes.”

But a 2017 report by the National Academies of Sciences (NAS) found “substantial evidence” that cannabis is an effective treatment for chronic pain. The NAS found that “cannabinoids demonstrate a modest effect on pain.” 

Are You Skinny Fat?

By Barby Ingle, PNN Columnist

I recently was visiting my primary care doctor for my wellness physical -- something I haven’t done in many years. This was a comprehensive exam that took a look at all of my physical symptoms, including body fat to bone density ratio.

I have heard since childhood that a bit of prevention can add years to your life. A healthy lifestyle is not something many of us are taught, but it is something we can start at any age and gain benefits from. Take heart disease, for example. It’s the number one killer in the United States and accounts for one in every four deaths. Many chronic pain patients have cardiovascular, balance, breathing and body fat challenges. Treating these health problems is difficult, so preventing them from starting is key.

When was your last wellness physical? Did you talk about prevention?

My medical records from a one-hour examination with a nurse and two hours with the doctor were 18 pages long. I was checked for routine things such as my vitals, medication use and past medical history. Risk factors were also discussed such as alcohol and smoking. I do neither and never plan to anyway.

My doctor devotes more time to each patient so that we can go beyond normal primary care practices. He and his staff perform a comprehensive advanced health screening and diagnostic tests that have been shown to help detect issues earlier. The results help give a clearer view of your overall health.

We went over a lot as I have been a patient of his for about 15 years now. He is my lead treatment provider and knows my case better than all of my other doctors.

One of the most interesting things was him saying I look totally normal and healthy. Yes, that is called invisible illness. But after looking at all of my blood and diagnostic test results, he got deep into his analysis. He said I am “skinny fat.”

What is skinny fat you ask? It’s a totally unscientific term used to describe a person who appears to be a healthy weight, but actually has a high body fat to muscle ratio. For example, my arms are stronger and have more muscle mass than my legs.

My entire life I was eating poor. I was the one eating mac ‘n’ cheese, cookies, cake and soda. I was an athlete and had hypoglycemia until I was 29. Then I developed central pain syndrome (also known as full body Reflex Sympathetic Dystrophy) and went from being extremely active and working out daily to bedbound or in a wheelchair for almost 7 years. I have been limited in workouts and physical activities for the past 8 years, going in and out of remissive states.

It is important to remember that the scale doesn’t paint the whole picture as to how healthy you are. You can be obese and look totally healthy or have great muscle tone and thicker bones. Looks can be deceiving. Some studies suggest that up to 35 percent of people with obesity may be metabolically healthy.

The number on the scale doesn’t paint the whole picture of someone’s health. Being skinny fat is a prime example. In my case, I am metabolically obese, yet in a normal weight range. Although I am not diabetic or even pre-diabetic, my doctor said I still need to pay attention to being skinny fat and make changes. I need to get my fat levels down and my muscle level up.

Preventative measures like these need to be added to my lifestyle, despite having chronic pain. Not doing so can lead to health problems like insulin resistance, high blood pressure, high cholesterol and an increased risk for blood clotting. This study gives some great information on the risks of being skinny fat from a medical standpoint.

By the time I left my doctor’s office, I had a detailed action plan.

My plan is to get my muscle mass up and my fat mass down over the next 3 months. I don’t know if this is wishful thinking being chronically ill, but I am going to give it my best shot. The tips my doctor gave include moving more with cardio walks, stationary bike exercises, and lifting two-pound weights -- which should be enough to tone my muscles without triggering a pain flare. He also advised me to eat more protein and stop eating all of the processed food that filled my diet.

My doctor will redo the testing in 3 months and let me know what other changes I need to make or if this was enough.

When you see another patient who is super skinny, know that they may be struggling with their body composition as well, and they may actually not be as healthy as you are. I have struggled with being too low weight in the past.  Now I am in a normal range, yet too fat!

It seems like we all have something to work on. I wish that as a child I was taught these important preventative and life-prolonging lessons.

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

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

Fibromyalgia and the High Risk of Suicide

By Pat Anson, PNN Editor

Studies have shown that fibromyalgia patients are 10 times more likely to die by suicide than the general population, and about three times more likely than other chronic pain patients.

What can be done to reduce that alarmingly high risk?

One possible solution is for fibromyalgia patients to visit a doctor more often, according to a new study published in the journal Arthritis Care & Research.

Researchers at Vanderbilt University Medical Center analyzed health data for nearly 8,900 fibromyalgia patients, finding 34 known suicide attempts and 96 documented cases of suicidal thoughts – also known as suicide ideation. Then they looked at how often the patients saw a doctor.

On average, patients who had suicidal thoughts spent 1.7 hours seeing a doctor per year, while those who did not have suicide ideation visited a doctor an average of 5.9 hours per year.

The difference was even more substantial for those who tried to commit suicide. Fibromyalgia patients who attempted suicide saw a doctor for less than an hour a year, compared to over 50 hours per year for those who did not try to kill themselves.

“Fifty hours versus one hour – that’s a staggering difference,” said lead author Lindsey McKernan, PhD, a professor of Psychiatry & Behavioral Sciences at Vanderbilt University Medical Center. “They might have been at one appointment in a year and this disorder, fibromyalgia, takes a lot to manage. It takes a lot of engagement.”

Fibromyalgia is characterized by deep tissue pain, fatigue, depression, insomnia and mood swings. Because fibromyalgia is difficult to diagnose and treat, there is a fair amount of stigma associated with it and patients often feel like they are not believed or taken seriously by their family, friends and doctors.

Self-isolation could be one reason fibromyalgia patients don’t visit a physician as often as they should.

“If you really break it down the people who were having suicidal thoughts weren’t going into the doctor as much. I think about the people who might be falling through the cracks. Chronic pain in and of itself is very isolating over time,” said McKernan.

“Perhaps we can connect those individuals to an outpatient provider, or providers, to improve their care and reduce their suicide risk. We also might see patients at-risk establish meaningful relationships with providers whom they can contact in times of crisis,” said senior author Colin Walsh, MD, a professor of Biomedical Informatics at Vanderbilt.

In addition to seeing a primary care provider or rheumatologist, researchers say fibromyalgia patients should be getting regular exercise and physical therapy, and working with a psychologist or mental health provider.

“We looked at thousands of people in this study and not one who received mental health services of some kind went on to attempt suicide,” McKernan said.

“Often, when you are hurting, your body tells you to stay in bed. Moving is the last thing that you want to do. And when you are tired, when your mood is low, when your body aches, you don’t want to see anybody, but that is exactly what you need to do — contact your doctors, stay in touch with them, and move. It really can make a difference.”

Lavigne Keeps ‘Head Above Water’ with Lyme Disease

By Pat Anson, PNN Editor

Lady Gaga isn’t the only celebrity speaking out about her battle with chronic pain and illness.

Pop star Avril Lavigne has released a new album called “Head Above Water” that was inspired by her battle with Lyme disease -- a bacterial infection usually spread by ticks that can lead to severe pain and chronic fatigue if it’s not treated and diagnosed early.

That’s what happened to Lavigne, who thought she just had the flu when she started having symptoms in 2014. It took several months for her to get a correct diagnosis.

“I was seeing every specialist, literally the top doctors, and they would pull up their computer and (say) ‘Chronic fatigue syndrome’ or “Why don’t you try to get out of bed Avril and just go play the piano? Are you depressed?’” Lavigne said in an emotional interview on Good Morning America.

“This is what they do to a lot of people that have Lyme disease. They don’t have an answer for them, so they tell them they’re crazy.”

The 33-year old singer eventually found a Lyme specialist who diagnosed her correctly. By then she was bedridden.

“One night, I thought I was dying, and I had accepted that I was going to die. My mom laid with me in bed and held me. I felt like I was drowning,” Lavigne wrote on her website.

AVRIL LAVIGNE

“Under my breath, I prayed ‘God, please help to keep my head above the water.’ In that moment, the song writing of this album began. It was like I tapped into something. It was a very spiritual experience. Lyrics flooded through me from that point on.”

Although the single “Head Above Water” is about Lyme disease, anyone bedridden or housebound by chronic pain or illness can probably relate to it.

Lavigne went public about her battle with Lyme disease in 2015, but it was another two years before she was well enough to sit at a piano and started composing music again.

“I fought Lyme disease on antibiotics and herbs for two years. I tried to have a life, but was in bed the majority of the time, and it was very up and down with good days and bad days,” Lavigne explained.

“When you’re in bed for the better part of two years, you lose muscle mass and your entire body gets weak. I’ve had to work to get my endurance up. ‘Head Above Water’ was the first song that I sang. I was fresh off not singing for two years. I thought my voice would be weak, it ended up being stronger than ever. The break happened to actually be good for my vocal cords.”

“Head Above Water” is the sixth album for the Canadian born singer, who has been nominated for eight Grammy Awards. Her single “Girlfriend” was the first music video to reach 100 million views on YouTube. Her foundation – the Avril Lavigne Foundation – raises awareness and supports people with Lyme disease and other chronic illnesses.

Seniors in Pain Hop Aboard the Canna-Bus

By Stephanie O’Neill, Kaiser Health News

Shirley Avedon, 90,­­ had never been a cannabis user. But carpal tunnel syndrome that sends shooting pains into both of her hands and an aversion to conventional steroid and surgical treatments is prompting her to consider some new options.

“It’s very painful, sometimes I can’t even open my hand,” Avedon said.

So for the second time in two months, she’s climbed on board a bus that provides seniors at the Laguna Woods Village retirement community in Orange County, Calif., with a free shuttle to a nearby marijuana dispensary.

The retired manager of an oncology office says she’s seeking the same relief she saw cancer patients get from smoking marijuana 25 years ago.

“At that time [marijuana] wasn’t legal, so they used to get it off their children,” she said with a laugh. “It was fantastic what it did for them.”

Avedon, who doesn’t want to get high from anything she uses, picked up a topical cream on her first trip that was sold as a pain reliever. It contained cannabidiol, or CBD, but was formulated without THC, or tetrahydrocannabinol, marijuana’s psychoactive ingredient.

“It helped a little,” she said. “Now I’m going back for the second time hoping they have something better.”

As more states legalize marijuana for medical or recreational use — 30 states plus the District of Columbia to date — the cannabis industry is booming. Among the fastest growing group of users: people over 50, with especially steep increases among those 65 and older. And some dispensaries are tailoring their pitches to seniors like Avedon who are seeking alternative treatments for their aches, pains and other medical conditions.

On this particular morning, about 35 seniors climb on board the free shuttle — paid for by Bud and Bloom, a licensed cannabis dispensary in Santa Ana.

After about a half-hour drive, the large white bus pulls up to the parking lot of the dispensary.

About half of the seniors on board today are repeat customers; the other half are cannabis newbies who’ve never tried it before, said Kandice Hawes, director of community outreach for Bud and Bloom.

“Not everybody is coming to be a customer,” Hawes said. “A lot are just coming to be educated.”

STEPHANIE O’NEILL FOR KHN

Among them, Layla Sabet, 72, a first-timer seeking relief from back pain that keeps her awake at night, she said.

“I’m taking so much medication to sleep and still I can’t sleep,” she said. “So I’m trying it for the back pain and the sleep.”

Hawes invited the seniors into a large room with chairs and a table set up with free sandwiches and drinks. As they ate, she gave a presentation focused on the potential benefits of cannabis as a reliever of anxiety, insomnia and chronic pain and the various ways people can consume it.

Several vendors on site took turns speaking to the group about the goods they sell. Then, the seniors entered the dispensary for the chance to buy everything from old-school rolled joints and high-tech vaporizer pens to liquid sublingual tinctures, topical creams and an assortment of sweet, cannabis-infused edibles.

Jim Lebowitz, 75, is a return customer who suffers pain from back surgery two years ago.

He prefers to eat his cannabis, he said.

“I got chocolate and I got gummies,” he told a visitor. “Never had the chocolate before, but I’ve had the gummies and they worked pretty good.”

“Gummies” are cannabis-infused chewy candies. His contain both the CBD and THC, two active ingredients in marijuana.

Derek Tauchman rings up sales at one of several Bud and Bloom registers in the dispensary. Fear of getting high is the biggest concern expressed by senior consumers, who make up the bulk of the dispensary’s new business, he said.

“What they don’t realize is there’s so many different ways to medicate now that you don’t have to actually get high to relieve all your aches and pains,” he said.

Limited Research

But despite such enthusiasm, marijuana isn’t well researched, said Dr. David Reuben, the Archstone Foundation professor of medicine and geriatrics at UCLA’s David Geffen School of Medicine.

While cannabis is legal both medically and recreationally in California, it remains a Schedule 1 substance — meaning it’s illegal under federal law. And that makes it harder to study.

The limited research that exists suggests that marijuana may be helpful in treating pain and nausea, according to a research overview published last year by the National Academies of Sciences, Engineering and Medicine. Less conclusive research points to it helping with sleep problems and anxiety.

STEPHANIE O’NEILL FOR KHN

Reuben said he sees a growing number of patients interested in using it for things like anxiety, chronic pain and depression.

“I am, in general, fairly supportive of this because these are conditions [for which] there aren’t good alternatives,” he said.

But Reuben cautions his patients that products bought at marijuana dispensaries aren’t FDA-regulated, as are prescription drugs. That means dose and consistency can vary.

“There’s still so much left to learn about how to package, how to ensure quality and standards,” he said. “So the question is how to make sure the people are getting high-quality product and then testing its effectiveness.”

And there are risks associated with cannabis use too, said Dr. Elinore McCance-Katz, who directs the Substance Abuse and Mental Health Services Administration.

“When you have an industry that does nothing but blanket our society with messages about the medicinal value of marijuana, people get the idea this is a safe substance to use. And that’s not true,” she said.

Side effects can include increased heart rate, nausea and vomiting, and with long-term use, there’s a potential for addiction, some studies say. Research suggests that between 9 and 30 percent of those who use marijuana may develop some degree of marijuana use disorder.

Still, Reuben said, if it gets patients off more addictive and potentially dangerous prescription drugs — like opioids — all the better.

Jim Levy, 71, suffers a pinched nerve that shoots pain down both his legs. He uses a topical cream and ingests cannabis gelatin capsules and lozenges.

“I have no way to measure, but I’d say it gets rid of 90 percent of the pain,” said Levy, who — like other seniors here — pays for these products out-of-pocket, as Medicare doesn’t cover cannabis.

“I got something they say is wonderful and I hope it works,” said Shirley Avedon. “It’s a cream.”

The price tag: $90. Avedon said if it helps ease the carpal tunnel pain she suffers, it’ll be worth it.

“It’s better than having surgery,” she said.

Precautions to Keep in Mind

Though marijuana use remains illegal under federal law, it’s legal in some form in 30 states and the District of Columbia. And a growing number of Americans are considering trying it for health reasons. For people who are, doctors advise the following cautions.

Talk to your doctor. Tell your doctor you’re thinking about trying medical marijuana. Although he or she may have some concerns, most doctors won’t judge you for seeking out alternative treatments.

Make sure your prescriber is aware of all the medications you take. Marijuana might have dangerous interactions with prescription medications, particularly medicines that can be sedating, said Dr. Benjamin Han, a geriatrician at New York University School of Medicine who studies marijuana use in the elderly.

Watch out for dosing. Older adults metabolize drugs differently than young people. If your doctor gives you the go-ahead, try the lowest possible dose first to avoid feeling intoxicated. And be especially careful with edibles. They can have very concentrated doses that don’t take effect right away.

Elderly people are also more sensitive to side effects. If you start to feel unwell, talk to your doctor right away. “When you’re older, you’re more vulnerable to the side effects of everything,” Han said. “I’m cautious about everything.”

Look for licensed providers. In some states like California, licensed dispensaries must test for contaminants. Be especially careful with marijuana bought illegally. “If you’re just buying marijuana down the street … you don’t really know what’s in that,” said Dr. Joshua Briscoe, a palliative care doctor at Duke University School of Medicine who has studied the use of marijuana for pain and nausea in older patients. “Buyer, beware.”

Bottom line: The research on medical marijuana is limited. There’s even less we know about marijuana use in older people. Proceed with caution.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

Overdose Crisis Began 40 Years Ago

By Pat Anson, PNN Editor

The overdose crisis in the United States began long before a spike in opioid prescribing and is likely to last for many more years, according to a new study published in Science magazine.

Researchers at the University of Pittsburgh Graduate School of Public Health looked at nearly 600,000 poisoning deaths in the U.S. from 1979 to 2016 and found a steadily rising number of overdoses caused by “subepidemics” of different drugs, including heroin, cocaine, illicit fentanyl, methamphetamine and prescription opioids. As each subepidemic rose and fell, the drug fueling it was replaced by another substance that can be abused.

“The epidemic of drug overdoses in the United States has been inexorably tracking along an exponential growth curve since at least 1979, well before the surge in opioid prescribing in the mid-1990s,” said senior author Donald Burke, MD, Pitt Public Health dean and UPMC-Jonas Salk Chair of Global Health. 

“Although there have been transient periods of minor acceleration or deceleration, the overall drug overdose mortality rate has regularly returned to the exponential growth curve. This historical pattern of predictable growth for at least 38 years strongly suggests that the epidemic will continue along this path for several more years.”

Burke and his colleagues say the type of drug and the demographics of those who die from overdoses has fluctuated over the years. When the use of one drug waned, another drug replaced it, attracting new populations from different geographic regions.

When plotted on a map, certain drugs dominate different areas. Almost every region in the country is a hot spot for overdose deaths from one or more drugs. Heroin and cocaine primarily impact urban populations, while prescription opioids and methamphetamine skew a bit more rural. Cocaine increased death rates for black men, while heroin raised the death rates for younger whites and older blacks.

To be successful, researchers say overdose prevention efforts must extend beyond control of individual drugs. The current subepidemic of drug deaths caused by illegal and legal opioids will likely to be replaced by something else.

“The recent historical variability with which some specific drugs have waxed and waned makes predictions about the future role of specific drugs far more uncertain. Indeed, it is possible that in the future, the drug overdose epidemic may be driven by a new or heretofore obscure psychoactive substance,” Burke warned. 

Click on the video below to see a chart of the different subepidemics and how they align to form an exponential growth curve:

Technological factors fueling the epidemic include enhanced communication methods (smartphones and the Internet), faster supply chains (FedEx and UPS) and underground drug manufacturing that increased the supply of drugs while lowering their cost. Socioeconomic factors such as unemployment, lost social connections and lack of healthcare may also be creating a climate of despair that leads to drug abuse. 

“Understanding the forces that are holding multiple subepidemics together into a smooth exponential trajectory may be important in revealing the root causes of the epidemic, and thisunderstanding may be crucial to implementation of prevention and intervention strategies,” Burke said. 

“Evidence-based public health responses have contained past epidemics. If we understand and address these root causes at the same time that we take on the opioid crisis, we should be able to curb the epidemic for good."

A Pained Life: Tyranny of the White Coat

By Carol Levy, PNN Columnist

I saw a new neurologist this past week. He was a lovely man. Unfortunately, I was referred to him in error. He does not treat trigeminal neuralgia, so this was the first and last time I would see him.

That saddened me. Not only because I really took a liking to him, but because he did some things I have seen far too rarely.

He started our appointment by saying, “I have read your history.” Not only that, he had tried to contact my neurosurgeon to find out why I had been referred to him, since he did not treat facial pain. He had gone to the trouble to prepare for the meeting despite knowing he was not the right specialist for me.

Like many doctors, he dictated his notes into a recording device while we were together. From what he said, it was obvious he had read my history and recalled much of it. I was amazed when he would stop and correct himself.

Even more surprising was when he got something wrong and I shook my finger to signal “No.” Immediately he stopped and asked, “What did I get wrong?”

I’d explain the pain was on the left side of my face, not the right, and in the upper part, not lower. He listened and corrected his notes.

Usually most of the docs who do this dictation, ostensibly to make sure they get the information right and have me there to confirm, do not care if what they say is wrong. In fact, my main experience has been docs who say patently wrong information.

For them, I would hold up my finger, shake my head and mouth the words, “That’s wrong.” Invariably, the doctors would shake their heads and silence me with a “Shhhh.” No effort is made to correct or even ask what is wrong with their notes. As a result, the wrong information stays on the record and subsequent docs then approach us with preconceived ideas about things that are not true.

The last pain management doctor I saw decided I had had a history of major depression. He did not ask if I had a psychiatric history or diagnosis but decided this on his own. He did not dictate his notes while I was with him, but I saw it when I went onto the online portal where after-visit summaries are posted.

I thought he must have gotten confused. When he asked me about my family history, I had mentioned a relative who had a diagnosis of depression.

At the next appointment, I asked him to change the record. ““That is not my history,” I said. “You must have been thinking about my relative.” He seemed to agree -- and yet that “history” remains on my official record.

Is it an arrogance that too many docs develop? Is it a hardness, where the patient is almost irrelevant to the entire process? Is it because the patient is not a “professional,” so they can't be trusted even when it is their own history they are giving?

I don't know. I do know that it’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting you.

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.

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