DEA Warns About Fentanyl As It Draws Criticism for Crackdown on Doctors

By Pat Anson, PNN Editor

The Drug Enforcement Administration has issued another public warning about the growing risk of counterfeit opioids and other medications made with illicit fentanyl. Over two-thirds of the drug deaths in the U.S. involve synthetic opioids like fentanyl, which is 50 to 100 times more potent that morphine.

Last year the DEA seized over 50 million counterfeit pills laced with fentanyl and more than 10,000 pounds of fentanyl powder. The seizures represent more than 379 million potentially deadly doses of fentanyl, according to the DEA, enough to kill every man, woman and child in the United States.

Over 56,000 American deaths last year involved fentanyl, nearly the number that died in the Vietnam War, and the crisis appears to be escalating. In 2021, a DEA laboratory analysis estimated that 4 out of 10 counterfeit pills laced with fentanyl contained a potentially lethal dose. The DEA now estimates that six out of ten fake pills contain a deadly dose of fentanyl. Just two milligrams of fentanyl, enough to fit on the tip of a pencil, is considered a potentially lethal dose.

“More than half of the fentanyl-laced fake prescription pills being trafficked in communities across the country now contain a potentially deadly dose of fentanyl. This marks a dramatic increase – from four out of ten to six out of ten – in the number of pills that can kill,” DEA Administrator Anne Milgram said in a public safety alert. “Never take a pill that wasn’t prescribed directly to you. Never take a pill from a friend. Never take a pill bought on social media. Just one pill is dangerous and one pill can kill.”

In an effort to bring more public attention to the fentanyl crisis, the DEA launched its One Pill Can Kill campaign, which highlights the similarities between real medications like oxycodone and alprazolam and their fake counterparts. The counterfeit pills are mass produced by drug traffickers in the U.S. and Mexico, using chemicals largely sourced from China.

Backlash Against DEA

As the DEA grapples with the fentanyl crisis, it’s coming under growing criticism about its efforts to reduce the supply of legal prescription opioids. Recent articles in USA Today, The New York Times, Los Angeles Times and VICE News – many based on stories that first appeared on PNN – suggest that the mainstream media is slowly coming to recognize the harm caused to pain patients by the DEA’s enforcement actions against doctors who prescribe opioids.

“Law enforcement agencies, especially the Drug Enforcement Administration, are out of control, with the DEA routinely caught releasing ‘safety plans’ for the patients of arrested physicians that simply direct pain patients to the nearest emergency room,” wrote Peter Pischke, a disabled freelance journalist, in a USA Today op/ed.

“American medicine and law enforcement continue to fight the last war. Policymakers still operate under the assumption that too many opioids are being prescribed. Overdose deaths — including those among adolescents — are now overwhelmingly caused by street fentanyl, not prescription medications,” Maia Szalavitz wrote in The New York Times.

The backlash against the DEA produced a backlash of its own in Newsweek, in an op/ed by a former deputy chief of staff at the DEA. Rather than doing fewer enforcement actions against doctors, Jim Crotty believes there should be more.

“With the U.S. drug crisis reaching unprecedented levels, and many opioid use disorders starting with prescription drugs, now is not the time to increase their availability,” wrote Crotty, who said the recent deaths of patients who lost access to opioids when their doctor’s license was suspended do not justify a change in DEA policy.

“These isolated incidents, however tragic, should not be used to upend otherwise sound drug policies designed to protect the American public from drug addiction and abuse,” said Crotty. “The U.S. is making slow but steady progress in rolling back the opioid crisis, but there is much work to be done. The threat of prescription opioids still looms large and requires continued vigilance from DEA and its partners to protect Americans' health and safety. We should be asking them to do more, not less.”

Crotty said over 13,000 Americans have died from overdoses involving prescription opioids in the last 12 months – a fraction of the number dying from fentanyl -- and repeated the old saw about the U.S. being “the world's largest consumer of prescription opioids.” That may have been true a decade ago, but no longer is. The U.S. now ranks 8th in per capita opioid consumption, behind Canada, Australia and several European countries

Letters to Doctors Reduced Their Opioid Prescribing for a Year

By Pat Anson, PNN Editor

Many doctors in the U.S. have scaled back or stopped prescribing opioid pain medication because they fear scrutiny or even imprisonment by the DEA and other law enforcement agencies.

A team of USC researchers believes there’s a better way to address risky opioid prescribing: have coroners and medical examiners notify all doctors by letter when a patient dies from an overdose.  

“This is not meant to be a law enforcement exercise but a simple nudge. The point is not to scare, blame or shame doctors, but to make them aware of real risks in their patient cohorts, risks they may not be aware of otherwise,” says Jason Doctor, PhD, Professor and Chair of Health Policy and Management at USC’s Sol Price School of Public Policy.

Doctor and his colleagues found that when 809 prescribers received a letter from San Diego county’s medical examiner notifying them about the overdose death of a patient, they reduced the doses of opioid prescriptions they wrote for up to a year afterward. Their findings, published in JAMA Network Open, builds upon a previous study that found the same clinicians reduced their prescribing for three months after receiving such a letter.

"Clinicians don't necessarily know a patient they prescribed opioids to has suffered a fatal overdose," said Doctor. “We knew closing this information loop immediately reduced opioid prescriptions. Our latest study shows that change in prescribing behavior seems to stick."

Nationwide, opioid prescribing has fallen dramatically over the past decade. But USC researchers found the reduction was faster and more extensive among clinicians who received the letter. After one year, their prescriptions were 7.1% lower in morphine milligram equivalent units (MME) than clinicians who hadn't received the letter. The number of new patients they prescribed opioids to also fell by two percent.

"The new study shows this change is not just a temporary blip and then clinicians went back to their previous prescribing," said Doctor. "This low-cost intervention has a long-lasting impact."

Other Drugs Often Involved

There are three major caveats to the USC study. The first is that other substances besides prescription opioids – such as illicit drugs -- were involved in many of the overdose deaths. That’s because the criteria for the study were broad and subjective, including any patient who died when "prescription drug overdose was the primary cause or contributed to the cause of death."

Second, clinicians were included in the study if they had written any opioid prescription within 12 months of the patient’s death. That would explain why 809 prescribers received letters about the overdoses of 166 patients. Doctors received a letter even if a patient was no longer under their care and without conclusive evidence that the prescription they wrote was involved in the death.

Third, the study does not address the growing number of deaths caused by illicit fentanyl, which is now responsible for the vast majority of U.S. overdoses. Letters to doctors are unlikely to have any major effect on overdoses involving street drugs. A 2022 study confirmed there is very little correlation between overdoses, prescription opioids and MME dosage levels.

There have been several previous efforts to rein in opioid prescribing by sending warning letters to doctors. Federal prosecutors in Wisconsin and other states have done it, telling high-dose prescribers they could face prosecution, even when they have not been charged with a crime or linked to an overdose.

The Medical Board of California’s “Death Certificate Project” sent threatening letters to doctors about overdoses that occurred months or years after an opioid prescription was written -- an effort that some likened to a “witch hunt.” Some doctors were targeted even when multiple drugs were involved or the cause of death was suicide.

USC’s Doctor says a gentler “nudge” is needed, not threats. And he wishes the letters sent to San Diego doctors were mandatory statewide.

“That was a terrible approach to delivering letters that the medical board carried out,” Doctor wrote in an email. “We had none of the outcry or problems the (board) did because we were supportive and met clinicians on a professional level.”

A Pain Poem: Only the Family Left to Tell

By Ingrid Hollis

How many pass, sight unseen
Only the family left to tell?
Yes, we know all too well
It was the pain.

Untreated, unheeded, so it goes
How engulfed in a fiery foe, left untended
It grew from head to toe.

Only the family left to tell,
How this kind of pain, left untreated,
They quickly go.

We cannot afford to go backwards in time,
Too many lost to pain unheeded
To "it’s all in your head” and “no one dies."
For die they do, a horrible fate.

When pain can be treated,
Make no mistake,
Pain knows no limits when untreated it goes.
Intractable suffering, it's horrible blows, becomes 24/7, and it never goes

How long can a heart beat, and a soul keep alive
When a body is stressed beyond limit?
And remember…
No one wants to die

Pain can be treated, make no mistake
Please discard this meme, this heartless theme
"Pain never killed anyone."
We've done it before.

We can't go backwards
We're better than that, we can do more.
Who decides our fate, it hangs in the balance
If intractable pain comes knocking on your door?

Will you be told to go away,
”Pain never killed anyone.”
Now please go away?

Ingrid Hollis is a person in pain and patient advocate. Ingrid recently retired from a leadership role in the Tennant Foundation’s Intractable Pain Syndrome Study and Education Project to care for her family.

Most Long Covid Cases Start with Mild Covid-19 Symptoms

By Sarah Wulf Hanson and Theo Vos, University of Washington

Even mild COVID-19 cases can have major and long-lasting effects on people’s health. That is one of the key findings from our recent multicountry study on long COVID-19 – or long COVID – recently published in the Journal of the American Medical Association.

Long COVID is defined as the continuation or development of symptoms three months after the initial infection from SARS-CoV-2, the virus that causes COVID-19. These symptoms last for at least two months after onset with no other explanation.

We found that a staggering 90% of people living with long COVID initially experienced only mild illness with COVID-19. After developing long COVID, however, the typical person experienced symptoms including fatigue, shortness of breath and cognitive problems such as brain fog – or a combination of these – that affected daily functioning.

These symptoms had an impact on health as severe as the long-term effects of traumatic brain injury. Our study also found that women have twice the risk of men and four times the risk of children for developing long COVID.

We analyzed data from 54 studies reporting on over 1 million people from 22 countries who had experienced symptoms of COVID-19. We counted how many people with COVID-19 developed clusters of new long-COVID symptoms and determined how their risk of developing the disease varied based on their age, sex and whether they were hospitalized for COVID-19.

We found that patients who were hospitalized for COVID-19 had a greater risk of developing long COVID – and of having longer-lasting symptoms – compared with people who had not been hospitalized. However, because the vast majority of COVID-19 cases do not require hospitalization, many more cases of long COVID have arisen from these milder cases despite their lower risk.

Among all people with long COVID, our study found that nearly one out of every seven were still experiencing these symptoms a year later, and researchers don’t yet know how many of these cases may become chronic.

Long COVID can affect nearly any organ in the body.

Why It Matters

Compared with COVID-19, relatively little is known about long COVID.

Our systematic, multicountry analysis of this condition delivered findings that illuminate the potentially steep human and economic costs of long COVID around the world. Many people who are living with the condition are working-age adults. Being unable to work for many months could cause people to lose their income, their livelihoods and their housing. For parents or caregivers living with long COVID, the condition may make them unable to care for their loved ones.

We think, based on the pervasiveness and severity of long COVID, that it is keeping people from working and therefore contributing to labor shortages. Long COVID could also be a factor in how people losing their jobs has disproportionately affected women.

We believe that finding effective and affordable treatments for people living with long COVID should be a priority for researchers and research funders. Long COVID clinics have opened to provide specialized care, but the treatments they offer are limited, inconsistent and may be costly.

Unanswered Questions

Long COVID is a complex and dynamic condition – some symptoms disappear, then return, and new symptoms appear. But researchers don’t yet know why.

While our study focused on the three most common symptoms associated with long COVID that affect daily functioning, the condition can also include symptoms like loss of smell and taste, insomnia, gastrointestinal problems and headaches, among others. But in most cases these additional symptoms occur together with the main symptoms we made estimates for.

There are many unanswered questions about what predisposes people to long COVID. For example, how do different risk factors, including smoking and high body-mass index, influence people’s likelihood of developing the condition? Does getting reinfected with SARS-CoV-2 change the risk for long COVID? Also, it is unclear how protection against long COVID changes over time after a person has been vaccinated or boosted against COVID-19.

COVID-19 variants also present new puzzles. Researchers know that the omicron variant is less deadly than previous strains. Initial evidence shows lower risk of long COVID from omicron compared with earlier strains, but far more data is needed.

Most of the people we studied were infected with the deadlier variants that were circulating before omicron became dominant. We will continue to build on our research on long COVID as part of the Global Burden of Disease study – which makes estimates of deaths and disability due to all diseases and injuries in every country in the world – in order to get a clearer picture of how COVID-19’s long-term toll shifted once omicron arrived.

Sarah Wulf Hanson, PhD, and Theo Vos, MD, are research scientists at the Institute for Health Metrics and Evaluation at the University of Washington, which is coordinating the Global Burden of Disease study.

This article originally appeared in The Conversation and is republished with permission.

A Third of Chronic Pain Sufferers Used Cannabis for Pain Relief

By Pat Anson, PNN Editor

Nearly a third of U.S. adults (31%) with chronic pain have used cannabis as an analgesic, according to a new survey that found over half of those who used cannabis said it enabled them to decrease their use of opioid medication and other pain therapies.

The survey findings, published JAMA Network Open, involved 1,724 people with chronic non-cancer pain who live in the 36 states (and Washington DC) that have legalized medical marijuana.

Unlike other studies that only focused on cannabis reducing opioid use, this survey found that over half of pain sufferers using cannabis also reduced or stop using non-opioid prescription pain relievers and over-the-counter analgesics. Many respondents also reported decreasing their use of physical therapy (39%), cognitive behavioral therapy (26%) and meditation (19%).  

“Most persons who used cannabis as a treatment for chronic pain reported substituting cannabis in place of other pain medications including prescription opioids,” wrote lead author Mark Bicket, MD, an Assistant Professor in the Department of Anesthesiology, University of Michigan School of Medicine.

“The high degree of substitution of cannabis with both opioid and nonopioid treatment emphasizes the importance of research to clarify the effectiveness and potential adverse consequences of cannabis for chronic pain. Our results suggest that state cannabis laws have enabled access to cannabis as an analgesic treatment despite knowledge gaps in use as a medical treatment for pain.”

The survey did not ask whether respondents smoked, vaped or ingested cannabis products, so there’s no way to tell which method was more effective at reducing pain. Nevertheless, it adds to a growing body of evidence that cannabis reduces pain and helps pain sufferers decrease their use of medications and other therapies.  

“Cannabis has established efficacy in the treatment of multiple conditions, including chronic pain, and it possesses a safety profile that is either comparable or superior to other controlled substances,” said Paul Armentano, Deputy Director of NORML, a marijuana advocacy group.

“So it is no wonder that those with legal access to it are substituting cannabis in lieu of other, potentially less effective and more harmful substances. As legal access continues to expand, one would expect the cannabis substitution effect to grow even more pronounced in the future.”

Several previous studies have also found that cannabis users often reduce their use of prescription opioids. A large survey conducted last year found that most medical marijuana users either stopped (42%) or reduced (37%) their use of opioids. A small number were also able to stop using psychiatric medications for anxiety, depression and PTSD.  

Another recent study at Cornell University found that legalization of recreational marijuana in 11 states led to significantly reduced prescribing for Medicaid patients for a broad range of medications used to treat pain, depression, anxiety, seizures and other health conditions.

A 2021 Harris Poll found that twice as many Americans are using cannabis or CBD to manage their pain than opioids.

Judge Won’t Stop DEA Despite Patient Deaths

By Pat Anson, PNN Editor

A federal judge in California has refused to grant a temporary restraining order that would have allowed Dr. David Bockoff to resume prescribing opioid medication to hundreds of pain patients at his practice in Beverly Hills. 

The Drug Enforcement Administration suspended Bockoff’s license to prescribe controlled substances on November 1, claiming five of his patients were in “imminent danger” because he prescribed high doses of opioids and kept inadequate medical records. Since the DEA’s suspension, however, at least two of Bockoff’s patients have died -- not because of his medical care, but from the lack of it.

Danny Elliott and his wife were so distraught over his inability to find another doctor and get opioid treatment that they both committed suicide on November 7.  Four weeks later, Jessica Fujimaki died at her home, apparently from complications caused by pain and opioid withdrawal. Both Elliott and Fujimaki had incurable conditions that cause severe pain and needed high dose opioids to have any quality of life.

Despite those deaths and the threat posed to other sick patients who can’t find new providers, Judge Stanley Blumenfeld, Jr. sided with the DEA, saying the “potential impact” on Bockoff’s patients was outweighed by the DEA’s concerns about his record keeping.

“The need for careful evaluation, monitoring, and control in these circumstances is obvious; and the combination of high dosages and the lack of documentation justifying those dosages and demonstrating proper evaluation and oversight is troubling,” Blumenfeld wrote in his 7-page ruling.

“As for the public interest, the Court is certainly concerned about the potential impact on vulnerable patients who need treatment to manage their pain. This concern, however, must be evaluated in the context of a case in which the DEA is asserting abusive prescription practices and its decision is entitled to deferential review.”

Bockoff has practiced medicine for over 50 years in California without any prior record of disciplinary action or complaints. The DEA provided no evidence that any of Bockoff’s patients – including the five said to be in “imminent danger” – were harmed while under his care.

One of the five – who is only identified in court records as “EC” – has lived with severe pancreatic pain for over 15 years. Bockoff gave her prescriptions for methadone and fentanyl, a potent synthetic opioid. In its emergency suspension order, the DEA said that use of fentanyl was “not consistent with FDA approved use,” and put EC at higher risk for addiction, overdose and death.

However, in an email provided to the judge, EC said she needed high doses of fentanyl to be able to work and eat food.

“I have exacerbated pain anytime I smell food, eat food, digest food, or sometimes just randomly,” EC wrote. “This pain medication allows me to practice law and serve as a prominent traumatic brain injury litigator and managing attorney for the largest personal injury law firm in California.

“I am able to rise to this level of practice because Dr. Bockoff counsels me on how to manage my pain and prescribes medication for me that allows me to manage my pain so I can be a contributing member of society.”

Judge Blumenfeld dismissed the email, essentially saying that EC’s medical records were more important than her ability to eat and work.

“While proper pain management can have significant benefits, E.C’s email does not fully address the allegations that she was prescribed controlled substances without proper medical evaluation, monitoring, and documentation,” the judge wrote.

‘More Deaths Could Be Imminent’

Several other patients – whose full names were redacted -- also provided testimonials about their care under Bockoff.

“I want to say I appreciate Dr. David Bockoff as the rarest of physicians that actually cares about my health and well-being,” MC wrote in a letter. “If I no longer could receive my pain medication from Dr. Bockoff I would not be able to walk, do house chores, continue part time consulting work, go to school, drive, not be able to get out of bed or walk even in the house.”

“I suffer from a great deal of pain and without medication my life would be awful. I would not be able to move, stand or do any of the activities that I do perform,” said SH. “Dr. Bockoff has helped me tremendously and I need his service in order to have some quality of life.”

“Dr. Bockoff’s practice is already filled with patients who are in a dangerous medical predicament, with no medicine. As more patients run out of their last month’s medication, more deaths could be imminent,” warned DL.

Judge Blumenfeld rejected those claims as well, saying Bockoff’s attorney, Ashli Summer McKeivier, provided no evidence that Bockoff’s medical practice faced “irreparable harm” from to his suspension or that the DEA erred in suspending his license.  

“Plaintiff has not responded by producing substantial evidence to refute claims that he has been improperly dispensing high dosages of the controlled substances at issue,” Blumenfeld wrote. “Nor has Plaintiff shown that there are no other available providers able to properly treat patients who can no longer receive a prescription from him.”

“I’m very disappointed in the judge’s ruling,” McKeivier told PNN.

Munzing Testimony

Much of the government’s case against Bockoff is dependent on the opinions of Dr. Timothy Munzing, a family practice physician who has created a lucrative second career for himself by working as a consultant for the DEA and DOJ. According to GovTribe, a website that tracks federal contracts, Munzing has made over $3.4 million in the last 8 years working for the government and testifying in dozens of cases against doctors.

“Dr. Munzing will testify that Dr. Bockoff’s patient care fell below the standard of care in California and the prescriptions resulting from several examinations were not for a legitimate medical purpose,” the DEA said in court documents. Munzing was not called to testify before Judge Blumenfeld.

McKeivier says the DEA failed to prove there was any “imminent danger” or harm done to Bockoff’s patients, even though Munzing reviewed three years of his medical records.

“The government made an argument that basically disproved itself,” she said. “If you’ve got 3 years of records and in those 3 years of records you cannot point to one example of death, overdose, bodily injury or diversion, then that disproves the fact that any of the danger based on those things is imminent. If for three years you have a track record of it never happening, then how can it be imminent to happen now?”  

Bockoff is pursuing another legal avenue by appealing his suspension to a DEA Administrative Law Judge, who will begin hearings in Washington DC on January 19. That hearing process is expected to take nine days. A final decision on the suspension could be weeks or months after that.

Guideline Recommends Surgery Patients Be Screened for Cannabis Use

By Pat Anson, PNN Editor

New medical guidelines recommend that all patients undergoing anesthesia should be screened for cannabis use before surgery, and that procedures should be delayed if patients are thought to be under the influence or impaired.

The guideline by the American Society of Regional Anesthesia and Pain Medicine (ASRA Pain Medicine) is intended for anesthesiologists. It was developed by a panel of experts that included anesthesiologists, pain specialists and a patient advocate to deal with the growing number of people using either recreational or medical marijuana. An estimated 10% of Americans use cannabis monthly.

“Before surgery, anesthesiologists should ask patients if they use cannabis – whether medicinally or recreationally – and be prepared to possibly change the anesthesia plan or delay the procedure in certain situations,” Samer Narouze, MD, ASRA Pain Medicine president, said in a statement.

“They also need to counsel patients about the possible risks and effects of cannabis. For example, even though some people use cannabis therapeutically to help relieve pain, studies have shown regular users may have more pain and nausea after surgery, not less, and may need more medications, including opioids, to manage the discomfort. We hope the guidelines will serve as roadmap to help better care for patients who use cannabis and need surgery.”

The guideline recommends that patients be asked about their cannabis use before surgery, including whether it was smoked or ingested, the amount used, how recently it was used, and the frequency of use. It does not endorse drug testing of patients, meaning patients would have to be taken at their word.

If a patient admits recently smoking cannabis, the guideline recommends that non-emergency, elective procedures be postponed for a minimum of two hours because of the increased risk of a heart attack before, during and after surgery.

“In my opinion, these guidelines appear to be overly cautious at best and discriminatory at worst,” said Paul Armentano, Deputy Director of NORML, a marijuana advocacy group. “The relationship between cannabis and opioids is well-established, with nearly 100 papers in the literature showing that pain patients typically reduce or eliminate their intake of opioids over time following cannabis use.” 

Armentano cited a recent pilot study that found people who use cannabis respond no differently to local anesthesia than those who do not. Local anesthesia is different from general anesthesia because patients remain conscious during a procedure such as dental work. 

The evidence on cannabis and general anesthesia is rather thin, and because of that the ASRA guideline gives low grades to several of its recommendations, including the one about delaying surgery.  No recommendations are made about tapering cannabis use before or after surgery, or whether to prescribe opioids to patients who use cannabinoids due to “current lack of evidence.” Anesthesiologists are instead urged to use their own clinical judgement.   

In 2020, the Perioperative Pain and Addiction Interdisciplinary Network (PAIN) released more restrictive guidelines about cannabis use, recommending that heavy cannabis use be tapered or stopped before surgery.

7 Questions Seniors Should Ask Before Major Surgery

By Judith Graham, Kaiser Health News

Larry McMahon, who turns 80 this month, is weighing whether to undergo a major surgery. Over the past five years, his back pain has intensified. Physical therapy, muscle relaxants, and injections aren’t offering relief.

“It’s a pain that leaves me hardly able to do anything,” he said.

Should McMahon, a retired Virginia state trooper who now lives in Southport, North Carolina, try spinal fusion surgery, a procedure that can take up to six hours? (Eight years ago, he had a lumbar laminectomy, another arduous back surgery.)

“Will I recover in six months — or in a couple of years? Is it safe for a man of my age with various health issues to be put to sleep for a long period of time?” McMahon asked, relaying some of his concerns to me in a phone conversation.

Older adults contemplating major surgery often aren’t sure whether to proceed. In many cases, surgery can be lifesaving or improve a senior’s quality of life. But advanced age puts people at greater risk of unwanted outcomes, including difficulty with daily activities, extended hospitalizations, problems moving around, and the loss of independence.

I wrote in November about a new study that shed light on some risks seniors face when having invasive procedures. But readers wanted to know more. How does one determine if potential benefits from major surgery are worth the risks? And what questions should older adults ask as they try to figure this out? I asked several experts for their recommendations. Here’s some of what they suggested.

1) What’s the goal of this surgery?

Ask your surgeon, “How is this surgery going to make things better for me?” said Margaret “Gretchen” Schwarze, an associate professor of surgery at the University of Wisconsin School of Medicine and Public Health.

Will it extend your life by removing a fast-growing tumor? Will your quality of life improve by making it easier to walk? Will it prevent you from becoming disabled, akin to a hip replacement?

If your surgeon says, “We need to remove this growth or clear this blockage,” ask what impact that will have on your daily life. Just because an abnormality such as a hernia has been found doesn’t mean it has to be addressed, especially if you don’t have bothersome symptoms and the procedure comes with complications, said Drs. Robert Becher and Thomas Gill of Yale University, authors of that recent paper on major surgery in older adults.

2) If things go well, what can I expect?

Schwarze, a vascular surgeon, often cares for patients with abdominal aortic aneurysms, an enlargement in a major blood vessel that can be life-threatening if it bursts.

Here’s how she describes a “best case” surgical scenario for that condition: “Surgery will be about four to five hours. When it’s over, you’ll be in the ICU with a breathing tube overnight for a day or two. Then, you’ll be in the hospital for another week or so. Afterwards, you’ll probably have to go to rehab to get your strength back, but I think you can get back home in three to four weeks, and it’ll probably take you two to three months to feel like you did before surgery.”

Among other things people might ask their surgeon, according to a patient brochure Schwarze’s team has created: What will my daily life look like right after surgery? Three months later? One year later? Will I need help, and for how long? Will tubes or drains be inserted?

3) If things don’t go well, what can I expect?

A worst case scenario might look like this, according to Schwarze: “You have surgery, and you go to the ICU, and you have serious complications. You have a heart attack. Three weeks after surgery, you’re still in the ICU with a breathing tube, and you’ve lost most of your strength, and there’s no chance of ever getting home again. Or, the surgery didn’t work, and still you’ve gone through all this.”

“People often think I’ll just die on the operating table if things go wrong,” said Dr. Emily Finlayson, director of the UCSF Center for Surgery in Older Adults in San Francisco. “But we’re very good at rescuing people, and we can keep you alive for a long time. The reality is, there can be a lot of pain and suffering and interventions like feeding tubes and ventilators if things don’t go the way we hope.”

4) Given my health, age and functional status, what’s the most likely outcome?

Once your surgeon has walked you through various scenarios, ask, “Do I really need to have this surgery, in your opinion?” and “What outcomes do you think are most likely for me?” Finlayson advised.

Research suggests that older adults who are frail, have cognitive impairment, or other serious conditions such as heart disease have worse experiences with major surgery. Also, seniors in their 80s and 90s are at higher risk of things going wrong.

“It’s important to have family or friends in the room for these conversations with high-risk patients,” Finlayson said. Many seniors have some level of cognitive difficulties and may need assistance working through complex decisions.

5) What are the alternatives?

Make sure your physician tells you what the nonsurgical options are, Finlayson said. Older men with prostate cancer, for instance, might want to consider “watchful waiting,” ongoing monitoring of their symptoms, rather than risk invasive surgery. Women in their 80s who develop a small breast cancer may opt to leave it alone if removing it poses a risk, given other health factors.

Because of Larry McMahon’s age and underlying medical issues (a 2021 knee replacement that hasn’t healed, arthritis, high blood pressure), his neurosurgeon suggested he explore other interventions, including more injections and physical therapy, before surgery. “He told me, ‘I make my money from surgery, but that’s a last resort,” McMahon said.

6) What can I do to prepare myself?

“Preparing for surgery is really vital for older adults: If patients do a few things that doctors recommend — stop smoking, lose weight, walk more, eat better — they can decrease the likelihood of complications and the number of days spent in the hospital,” said Dr. Sandhya Lagoo-Deenadayalan, a leader in Duke University Medical Center’s Perioperative Optimization of Senior Health program.

When older patients are recommended to POSH, they receive a comprehensive evaluation of their medications, nutritional status, mobility, preexisting conditions, ability to perform daily activities, and support at home. They leave with a “to-do” list of recommended actions, usually starting several weeks before surgery.

If your hospital doesn’t have a program of this kind, ask your physician, “How can I get my body and mind ready” before having surgery, Finlayson said. Also ask: “How can I prepare my home in advance to anticipate what I’ll need during recovery?”

7) What will recovery look like?

There are three levels to consider: What will recovery in the hospital entail? Will you be transferred to a facility for rehabilitation? And what will recovery be like at home?

Ask how long you’re likely to stay in the hospital. Will you have pain, or aftereffects from the anesthesia? Preserving cognition is a concern, and you might want to ask your anesthesiologist what you can do to maintain cognitive functioning following surgery. If you go to a rehab center, you’ll want to know what kind of therapy you’ll need and whether you can expect to return to your baseline level of functioning.

During the covid-19 pandemic, “a lot of older adults have opted to go home instead of to rehab, and it’s really important to make sure they have appropriate support,” said Dr. Rachelle Bernacki, director of care transformation and postoperative services at the Center for Geriatric Surgery at Brigham and Women’s Hospital in Boston.

For some older adults, a loss of independence after surgery may be permanent. Be sure to inquire what your options are should that occur.

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

Charges Against Founder of Genetic Testing Company Dropped

By Pat Anson, PNN Editor

The U.S. Department of Justice has quietly dropped criminal charges against the founder and CEO of Proove Biosciences, a genetic testing company based in California that was accused of paying physicians over $3.5 million in illegal kickbacks. A judge dismissed the case against Brian Meshkin and five other defendants last month “in the interests of justice” after federal prosecutors declined to move forward with the case.

“There has been so much injustice over the past 6 years that it is wonderful to see truth prevail.  I am excited to have the opportunity to set the record straight and to move forward from here with my head held high,” Meshkin said in a statement.

A spokesperson for the U.S. Attorney’s Office in San Diego declined to comment on the case being dismissed, according to The Orange County Register.

Proove specialized in genetic testing of pain patients and claimed its DNA tests could determine how well they metabolized opioid medication and if they were at risk of abuse. The company claimed that 94% of patients experienced significant pain relief within 60 days of treatment changes based on their test results.

Proove’s aggressive marketing included millions of dollars in “research fees” paid to physicians who ordered its tests, a practice that ran afoul of federal kickback laws. In 2017, the company’s headquarters in Irvine, CA was raided by FBI agents and Proove was placed into a court-ordered receivership – a form of bankruptcy – when its business collapsed.

The former vice-president of marketing for Proove plead guilty in 2020 to paying illegal kickbacks. The following year, the National Spine & Pain Center in Maryland agreed to pay $5.1 million in restitution to Medicare as part of a criminal settlement for taking kickbacks from Proove.

Meshkin blamed the company's legal and financial problems on “erroneous and damaging” reports by STAT News, which detailed how physicians could make up to $144,000 a year if they funneled their patients’ genetic tests to Proove.

“This work was destroyed by misinformation spread by a handful of disgruntled ex-employees and contractors, spread by the media, and blindly adopted by some in the Southern District of California office of the U.S. Attorney and the FBI,” Meshkin said. 

“That misinformation and false and defamatory allegations directed at Proove hurt thousands of people beyond the company itself, including the many patients and their families who have died from or whose lives were impacted by opioid overdoses and suicide that could have been prevented with access to Proove’s life-saving technology.”

Many questions remain about the effectiveness of the tests. A genetic expert told STAT News the company’s testing claims were “hogwash” and said they exploited fears about opioid addiction.  A Montana pain patient who took the test and followed Proove’s treatment advice said they didn’t work for her.

“To me it was a waste of time and money. The meds it said I should be taking either didn’t work, stopped working, or made me sick. And the meds I should not be taking, I do just fine on,” she told PNN in 2017.

Why I Am Stepping Back from Patient Advocacy

By Barby Ingle, PNN Columnist

Each year at Thanksgiving, our family has a tradition of choosing a community project to support. Every year we do something different: caroling, feeding the homeless, or spending time at the local nursing home. But 2006 was different. The year before, I was diagnosed with Reflex Sympathetic Dystrophy (RSD), a chronic nerve disease that my late stepsister also developed.

We had much trouble getting help and care, so at our Thanksgiving dinner in 2006, we decided to start a 501c3 nonprofit to support the RSD community. Although we had joined other support groups and worked with other nonprofits, it was not what we expected. We wanted to be something different. We wanted to be inclusive of patients, caregivers, providers, legislators and providers treating RSD specifically.

But after the first year, we saw that the same challenges we were working to overcome with prevention, diagnostics, treatment and long-term care were happening to many patients dealing with other chronic pain conditions.

BARBY INGLE

Since helping to start the Power of Pain Foundation – also known as the International Pain Foundation (iPain) -- I learned a lot. I went to classes to learn more about RSD, as well as over 150 other chronic and rare disease conditions.

I would say I became an RSD expert, and over the years taught many healthcare professionals, patients, caregivers and industry leaders about treatments, long-term outcomes, and how to navigate the system from the patient point of view.

I have learned that not every patient wants help, not every patient needs help, and not every patient wants the help that you can give. Having a degree in social psychology was helpful. I understood why there are haters, naysayers and pessimists in the pain community. They are in all of society, why would they not be in our community? 

I remember when I was coaching Deb, our marketing director, she would tell me: “Everyone needs a break sometimes. Take your vacations, take your days off, and leave the job behind.”

Well, when you have a chronic illness, you can’t just leave it behind. I have tried. However, you can take time for yourself. It is not your job to help everyone, even if you want to. It is even more necessary to take care of yourself first.

Therefore, I am following Deb’s advice and stepping back. Mostly it’s because I grew tired of the negativity and hate that comes from being in the leadership position that I was in. Whenever we did an iPain project or chose a “Hero of Hope” recipient, I was thanked and would tell people that I only had one vote. But some did not understand that I literally had just one vote.

Today, I have no vote. As of January 1, 2023, I am no longer President of the iPain Foundation. I still love iPain, and I am still going to volunteer for projects and events. But I am going to take the next two years to do other projects and things for me as a patient, wife, sister and human.

The amount of hate I received over the years for doing something that I have passion for became just too much. I was often told, “You only get to do this because of your position” and “If I was in charge, I’d do it differently.”

To those who said that, watch what I do next. You can do many things, whether you have a position of leadership or not. You can take classes (there are many great ones online) and learn how to do the things you think are important. I have done that and will continue to do it. I will show the pain community that you can do big things without a leadership position. Yes, you can be a leader in action, without the title.  

I wish the 2023-24 leadership of iPain all the best, and hope they succeed everywhere with all they take on, create and produce for the pain community. I am glad to have the stress of the job off my shoulders. Am I done? Yes, I am out!

We will see if I join another board of directors in the future, but for now I will do what I have always done as a pain patient: go into the world to make a difference. I am excited to get back to writing columns for Pain News Network and iPain Living Magazine. I am working on a few more books to publish, some additional presenting, and working on legislation in the coming years.

I have a few of my bucket list items to check off, and I will go on more life adventures with my husband, Ken. Most of all, I will be excited to say more and do more of what I want to do, and not out of obligation for a position I was voted into.  

To the pain community: Be good to each other. Remember you get the help you can be given, not always the help you need. The anger, frustration and negative feelings you face are yours. They are normal feelings for a person in pain, but please also remember the person you reach out to for help may not be able to provide the help you want.

Keep going forward. The help you need is available, how you get there is optional. Taking out those negative feelings on others, especially the ones closest to you, is the ultimate way to drive others away. It is your choice. I choose to get out of the negativity and to work on making a difference. To be a little bit more concise, “You be the best you, I will be the best me, too.”

It can be a win-win situation for us both, which is always good. 

You can find me on my personal social media, you will see more articles from me at PNN and other outlets, and you can always check out my personal website to find out what I am up to next. There will be much more to come, and I promise to continue to make a difference and help in ways that I can. I hope I motivate you to do the same for yourself.  

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts over the years. You can follow her at www.barbyingle.com 

My Story: How I Was Medically Gaslighted

By Preslee Marshall, Guest Columnist

I remember the first time I experienced what felt like an electric shock sensation. It was a sudden zap out of nowhere, and I wasn’t sure what to make of it. 

It started happening about once a month, then turned into once every two weeks. Before I knew it, this painful experience was happening several times a day with no apparent explanation. 

Recognizing that the pain I was feeling wasn’t normal, I went to a walk-in clinic to get answers. 

I went over my symptoms with a doctor and was told, “It’s probably just fibromyalgia. Do Tai Chi, it should help with that.”  

Confused, I asked the doctor to spell out what fibromyalgia was, as I hadn’t heard of it before. The way it was brushed off with “do Tai Chi,” I figured it couldn’t be too serious. 

Finding information online about fibromyalgia didn’t take much time or effort. This chronic disorder causes pain and tenderness throughout the body, fatigue and trouble sleeping. One thing that stood out to me was how some people with fibromyalgia wind up on disability.  

On the one hand, I could see the seriousness of fibromyalgia and how it can change people's lives. But on the other hand, I’m told to “do Tai Chi” with no official diagnosis or test.

What if the doctor was wrong? 

PRESLEE MARSHALL

I decided to contact another medical professional about my symptoms and to get testing done to rule out other possible conditions. I called my family doctor (sweet lady, but her office is too far from me) and told her what was happening. She brought up a few ideas on what she thinks could be the problem, such as multiple sclerosis or fibromyalgia, and sent in a referral for me to see a neurologist, which was a 6-month wait.  

As my pain worsened, I knew I couldn’t wait six months, so I called the walk-in clinic again and said that if it was fibromyalgia, then I should be sent for testing to determine that. I begged for an MRI test to rule out other illnesses, which I thought would help tremendously. I knew I needed to get referred as soon as possible if I wanted answers. 

The clinic assured me that the neurologist would send me for those tests anyway, and that there was no point in doing it now. In my heart, I knew that it wouldn’t be that easy. It took some convincing, but the clinic finally agreed to send the referral for an MRI.  

‘Get Your Nails Done’ 

After a long wait, it was finally time to see the neurologist, who I thought would solve my problems. I was wrong.  

The first question I was asked was if I had anxiety. After answering yes, I could tell that he was sold on that being the problem.  I’ve struggled with social anxiety for as long as I remember. I knew that this was not the case and said that to him.  

“It’s all in your head,” he said at the end of the appointment. “If you get your nails done, you’ll feel better.”  

I was shocked and devastated. I walked into the lobby, went straight to the bathroom, and cried. I knew the pain was real, but felt hopeless, wiping away my tears to head home.  

That same month, just to prove to myself that I didn’t imagine my symptoms, I got a manicure, pedicure, massage and facial. And I still felt awful! I needed to prove to the doctor that he was wrong. I had my upcoming MRI to look forward to. 

The day came and I got the MRI. The imaging test ruled out multiple sclerosis as a possibility, as well as other conditions. I brought those results back to my family doctor, who referred me to a rheumatologist.  

After seeing the MRI results, asking me a few questions, and giving me a pressure point test, the rheumatologist diagnosed me with fibromyalgia. At that point, it had been over a year and a half since I started noticing the symptoms. I felt grateful to finally have a diagnosis. 

Word of the Year 

After such a long ordeal and less-than-ideal treatment by medical professionals, I’m on a mission to raise awareness about medical gaslighting. 

Merriam-Webster, the oldest dictionary publisher in the United States, recently picked "gaslighting" as its word of the year. There are different forms of gaslighting, which Merriam-Webster defines this way: 

“Psychological manipulation of a person… that causes the victim to question the validity of their own thoughts, perception of reality, or memories and typically leads to confusion, loss of confidence and self-esteem, uncertainty of one's emotional or mental stability, and a dependency on the perpetrator.” 

Medical gaslighting is when a healthcare provider makes a patient feel as though their perception of their own symptoms is false. A common phrase being, “It’s all in your head.” 

In my case, it was “do Tai Chi” and “get your nails done.”  

After suffering for well over a year and having medical professionals dismiss my symptoms, I realized that it was up to me to get myself properly diagnosed. 

I’d like to remind others who are struggling not to give up. It can feel like an impossible never-ending situation, but there are people in the medical field who will listen. 

Preslee Marshall, 25, is from Winnipeg, Manitoba. When she’s not busy managing her business, Preslee is traveling the world and unlocking new opportunities for her future. 

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.

Gabapentin Won’t Cure the Opioid Crisis

By Pat Anson, PNN Editor

The risk of prescribing gabapentin (Neurontin) off-label for pain management may finally be sinking into the medical community. The latest sign is an op/ed published in JAMA Internal Medicine, which warns that gabapentin is often ineffective for pain, may raise the risk of overdose, and “will not cure the opioid crisis”    

Gabapentin is a non-opioid medication that was originally developed as an anticonvulsant to treat epileptic seizures. In recent years, gabapentin prescribing has grown 5-fold, with a growing number of physicians prescribing it “off-label” for both acute and chronic pain. Some do it as an alternative to opioids, while others prescribe it in conjunction with opioids.

“Gabapentin is often thought of as a safe alternative for pain management and may be initially enticing as a nonopioid medication, though the evidence for its efficacy in pain control is limited,” wrote lead author Raegan Durant, MD, a Professor at University of Alabama at Birmingham School of Medicine and Associate Editor at JAMA.

“With more restrictive opioid prescribing guidelines, physicians may be struggling to treat pain effectively and more frequently turning to gabapentin as a nonopioid option. However, avoidance of opioids at the expense of either more frequent use of gabapentin or concurrent gabapentin and opioids simply exposes patients to similar risks for harm often without improving the likelihood of actual pain relief.”

The warning from Durant and JAMA Associate Editor Audrey Han, MD, stems from a recent study about the “alarming upward trajectory” of gabapentin being co-prescribed with opioids.  From 2006 to 2018, overlapping prescriptions for the two medications rose by 344 percent, with many of the prescriptions being written by pain specialists.

Gabapentin is only approved by the Food and Drug Administration to treat partial seizures, nerve pain from shingles and restless leg syndrome, but is also widely prescribed off-label for fibromyalgia, neuropathy, migraine and other pain conditions – despite little evidence supporting its use.  

In addition to poor pain relief, many patients who take gabapentin report side effects such as dizziness, confusion, drowsiness, mood swings and weight gain. A 2019 study linked gabapentin to a growing number of attempted suicides.

Gabapentin may cause euphoria, feelings of intoxication, and enhance the effects of opioids and other drugs. The FDA has warned that gabapentin may cause serious breathing problems and respiratory depression, especially in older adults. A recent study found gabapentin raises the risk of delirium in seniors recovering from surgery.

First, Do No Harm

By Mia Maysack, PNN Columnist

When living in immense amounts of pain, it can be common to regularly dismiss minor inconveniences that would greatly perturb others, if not hinder them immensely.

Speaking from personal experience, I’ve permitted medical situations to worsen due to my tolerance for ailments, as opposed to promptly treating them. What’s one more thing, right?  

But when it begins to get unmanageable and my go-to treatments aren’t working, I’m often at a loss to calm a pain flare or break a pain cycle. Sometimes I am left with no other choice than my absolute least favorite thing to do — which is go to the ER. 

Recently I was severely dehydrated, the main reason I ever visit an emergency department. Because without retaining adequate water, there can be little improvement in any of my other symptoms. I essentially have given up on the pursuit of pain relief.

It’s typical that when I convey my reasons for being at the ER -- such as days or weeks of an unbreakable migraine or a never-ending cluster headache attack -- there’s judgment about my sincerity regarding conditions that don’t present themselves as a broken bone or bleeding cut.

I recall a time before I retired from nursing, when a patient came in with severe head pain. Knowing what that is like, I ensured dimmed lighting, used a soft voice, closed the blinds, and just moved in a way that I’d appreciate if I was the one lying in the bed. Which is far more often than I’d like.   

A colleague stormed in, turned on the lights and basically shouted at the patient. He later conveyed a disbelief for the patient’s claims -- even though the oath we took includes trusting discomfort as being just as the patient describes it.

The fact of the matter is that no one is able to fully comprehend another person’s pain. And it’s not up for any of us to have a final say on what we don’t personally experience.   

For years, providers have been up in arms regarding the misuse of opioid medication, and as a result are trying to over-correct a mistake that was never the patient’s fault. It’s now impossible for many of us to receive adequate pain relief.   

This has led to a distrust in the healthcare system and is also playing a large role in the number of lost lives we’re seeing.  One of the leading causes of death is suicide. And one of the leading causes of disability is depression. There’s definitely no shortage of reasons to feel down. What’s occurring in our world is cause for chronic sadness. 

As I sat there in the ER with my shades on, while picking up on their shade, I had to use all my might to explain why I was there – telling them my history and answering their questions. There are no words to adequately explain what it’s like to go through inquisitions like that so many times. To have hundreds of appointments, spend countless hours on the phone or in waiting rooms, and fighting for a proper diagnosis. Not to mention all the trial and error treatments, and the constant “permission slip” signing of authorizations just to be seen.  

Having been through it for as long as I have, it has caused its own form of trauma, something I believe is underappreciated. There are moments when I’m not even able to bring myself to enter a medical clinic due to the impact of things like being stereotyped, not believed or even helped. 

This could obviously lead anyone to seek out some sort of way to assist or soothe on their own. That includes, but isn’t limited to, checking out of their own physical existence. I’ve felt pushed to contemplate that a number of times, which I’m not ashamed to admit. Because this needs to be talked about more.   

The healthcare system often fails to such an extent that people are left to feel as though they have no other choice than to find an exit. If only things were set up to truly be concerned about our well-being. Then suicide prevention would look a lot like harm reduction, in the form of providing basic needs like affordable housing, food security and access to mental health resources.  

The medical-industrial complex can lead a person to believe their life does not matter. I live on in spite of it and to honor those who are gone.

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 the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

Pain Sufferers Are Unfairly Stigmatized

By Marimée Godbout-Parent, University of Quebec

Imagine living with pain every day for months, or even years — pain that is so intrusive, it disrupts every day of your life. Unfortunately, this is the daily reality of millions of people living with chronic pain. And all too often, they find their condition being stigmatized or even denied outright.

As a doctoral student in the epidemiology of chronic pain, I have the opportunity to work with patient partners. Given the high prevalence and multiple impacts of this disease, it is high time we started working to change attitudes and confront the prejudices that surround it. 

Before discussing chronic pain, let’s start at the beginning. Is pain always a negative thing? Of course not. Pain is essential to our proper functioning. It acts as an alarm system to warn us of danger.

For example, if we were to accidentally put our hand on a hot stove top, a pain message would be sent to our brain. Before we even had time to think about it, we would remove our hand from the hot surface, avoiding an intense burn in the process. This pain provides us with the reflexes we need in order to avoid the worst situations.

Pain can also last a little longer. This is the case, for example, after an injury, an operation or an infection. This pain will often resolve itself after a normal healing cycle or disappear with the help of treatment. This is called acute pain. Short-term pain like this is perceived more as a symptom.

Chronic Pain Is a Disease

When pain persists beyond the normal healing time, it is no longer considered simply a symptom, but a disease in its own right. This is called chronic pain. Chronic pain is defined as pain that persists for a minimum of three months. Yet, for the vast majority of people living with this disease, the pain persists for several years.

In these people, the pain message is somehow missing. It is no longer present to warn us of dangers, but becomes a burden on its own. Chronic pain can occur as a result of cancer, an accident, or after surgery. Unfortunately, sometimes we are unable to find the cause. This makes it difficult to treat.

Although this disease is not widely recognized, it is estimated to affect about 20 per cent of the Canadian population. Considering that our population in 2022 is estimated to be close to 39 million, this would mean that approximately 7.5 million people are living with chronic pain. For the purpose of comparison, 7.5 million Canadians is equivalent to the entire population of Québec. It’s an impressive and worrisome number.

In addition to affecting a large portion of the population, chronic pain causes more than just physical pain. The disease affects the daily functioning, psychological well-being, quality of life, social life and work of the people afflicted by it.

Imagine having so much pain that it reduces your ability to work, play with your children, see your friends or concentrate and even affects your ability to carry out everyday tasks. Despite the person’s desire to stay active, the body just can’t keep up. So it’s not surprising that consequences such as fatigue, frustration, sadness, anxiety and depression follow. The constant overlap between physical, psychological and social difficulties creates deep distress in this population.

Facing Prejudice

Despite the significant impacts associated with it, chronic pain remains largely stigmatized. Indeed, negative attitudes and beliefs that people living with chronic pain have become dependent on their medications, that they are exaggerating the severity of their condition, are just lazy or do not want to help themselves are widespread.

Chronic pain is a very real disease.

So, knowing the multiple consequences and prevalence of chronic pain, why is there still so much prejudice and stigma towards those who suffer from it?

The question remains unanswered. For some, what we cannot see simply does not exist. Because pain is an experience that varies from person to person, because we don’t have a specific tool for detecting it or because we can’t necessarily see it, pain can seem invisible. We have a harder time feeling sympathy or understanding for things that cannot be explained medically with medical tests or X-rays.

So, despite the many explanations offered by patients, they often have to deal with prejudices from health professionals, their entourage or the general population. Many people living with chronic pain feel that their pain is not understood by their friends, family, employers or even their health-care professionals, which adds to their feelings of helplessness, sadness and anger. In addition to dealing with the difficulties that chronic pain brings, these comments place an inestimable burden on sufferers.

Francine, who has been living with chronic pain for 15 years, regularly receives these types of comments from her family and friends:

“Well, you’ve only been walking for 10 minutes, you can do more. Just try harder.”

Sylvie, who has lived with chronic pain for 17 years, has to deal with her doctor’s comments:

“You are the only patient I have not been able to relieve with cortisone shots in 40 years, so perhaps you should consult a psychologist instead.”

These phrases, which can sound harmless to some, are often loaded with meaning for those who hear them on a daily basis. Accepting chronic pain as a disease is an important and difficult step. It should not be coupled with such pejorative comments.

Without being experts in the field, we can all play a role, in one way or another, in the lives of these people. Offering an active and understanding ear, not making quick judgments and acknowledging their condition is already a huge step in the right direction.

Support and communication with those around you are elements that should not be neglected and can certainly make a positive difference.

Marimée Godbout-Parent is a doctoral student in health sciences research at the University of Quebec in Abitibi-Témiscamingue. She has received funding from the Canadian Institutes of Health Research.

This article was written in collaboration with Sylvie Beaudoin and Christian Bertrand, patient partners. It originally appeared in The Conversation and is republished with permission.

We Need To Do a Better Job Educating the Public About Chronic Pain

By Carol Levy, PNN Columnist

It seems the pain community is so sharply focused on opioids that we tend to ignore what may be a more important issue: getting the public to understand chronic pain.

I hadn’t given it much thought, but a recent conversation with a friend brought it home to me.

“Jennifer” believed that someone with gender or sexual identity issues could be helped through talk therapy, mindfulness and relaxation techniques. Basically, anything that would take their minds off their struggles with sexuality.  

I told her people in pain get some of the same suggestions.

“What you're saying reminds me of what many people say about those of us in chronic pain, that psychotherapy, mindfulness and relaxation techniques can relieve our pain or even cure it. In reality, they don’t,” I said.

“Oh yes, they can,” Jennifer replied. “You have pain management doctors who offer mindfulness, psychotherapy and relaxation techniques. So, you do have cures.”

I shook my head, somewhat in sorrow.

“No, people who have incurable disorders like mine, trigeminal neuralgia, or other painful diseases like CRPS, Ehlers Danlos, lupus or multiple sclerosis won’t be helped by mindfulness or talk therapy. Those types of things don’t end the pain or cure the disease.”

To my amazement, this woman who holds her convictions very dear, replied, “You just taught me something. I didn't know that.”

And why should she? It is rare, if ever, that we hear chronic pain conditions called by name. The media doesn't do it, and we don’t usually hear or say it in general conversation. The name of the disease or disorder, and the level of pain they cause, usually go unmentioned.

We do hear about back pain, knee pain and other “aches and pains” that can be helped by braces, heat therapy, relaxation, and so on -- which helps further the belief that chronic pain is easily treatable. That is not to say back pain can’t be as debilitating as other disorders, but it is so common that it is taken for granted.

I think some of the blame falls on us. Many people think we act like addicts when we clamor for opioid medication. We resist efforts to reduce the dose and refuse to consider other therapies, many of which we’ve already tried.

We ignore the reality that we do not have a “right” to opioids. We have the right to get healthcare when we go to the doctor, but they have the right to decide what therapy and medications they will prescribe, if any.

As long as we spotlight our need for opioids, while ignoring the public’s lack of knowledge about painful diseases and disorders that can’t be cured, the more I fear we will continue to be ignored and disbelieved. And the more we’ll hear about talk therapy and mindfulness.

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.