Health Is the Wealth We Need

By Barby Ingle, PNN Columnist

I recently came across an interesting quote on Instagram about the four types of wealth. The quote goes like this:

“There are 4 types of wealth:

1. Financial wealth (money)

2. Social wealth (status)

3. Time wealth (freedom)

4. Physical wealth (health)

Be wary of jobs that lure you in with 1 and 2, but rob you of 3 and 4.”

The quote is meant as advice for people looking for employment and the types of jobs they should seek. But I look at it from the health perspective, since that is my biggest challenge in life.  I want health wealth. Financial, social and time wealth are often dependent on our health wealth. Without health we are limited in what we can do.  

People planning to have a child wish for a healthy baby. We also wish for long and healthy lives. We don’t always get to choose our health or even learn how to achieve it. I believe one way to help this would be putting more emphasis on health education in school.

It is hard to have good social wealth when your health is poor. You can’t participate in as many social outings or events, and you may have a poorer attitude about your living situation if you have a chronic pain condition. Belonging to a social group, maintaining friendships, being actively engaged in a positive productive way, and even being married all raise your social wealth.

Maintaining financial wealth is more straightforward. You either have money or you don’t. But even when you have money, you are often working on making, getting or winning more. Most of us would love to be millionaires, but even on relatively modest incomes of $75,000, studies show that people are happier.

Now take the average income of someone disabled by pain. Our households typically bring in less than $30,000 and many single disabled people are living on less than $15,000 a year. It is difficult to climb out of a financial rut with poor health and medical bills needing to be paid.

I know chronic pain patients who work, but due to poor health they are not able to take jobs that are high paying or sustainable long-term. Missing work due to illness, brain fog due to pain, depression, anxiety and painsomnia all affect our ability to be productive in a standard work environment. And it is often more difficult for a company hire you due to extra liability or disability costs made to accommodate you.

Even when your own health is good and you are taking care of someone who is disabled, it affects your finances through the type of jobs you take, health insurance, medical bills and supporting the rest of the family.

My husband has lost multiple jobs because my health care and insurance costs were too high for his employers. They found or invented reasons to let him go, such as missing too much work because he had to take time off to drive me to appointments. One company fired him for entering the parking lot without scanning his badge at the guard gate on the way in, a common practice in the mornings when the line to enter the lot was long.

For all of the reasons above, I believe that health wealth is the most important when it comes to living life to the fullest. It takes the most effort and action of all four types of wealth.

We strive to improve our health wealth so that we can live better lives. We don’t have the luxury of waiting for retirement to enjoy ourselves, so we must find and create moments when we can use our time and social wealth. They are the two most easily obtainable when living with chronic illness and striving for health wealth.

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.

Guideline Paranoia

By Carol Levy, PNN Columnist

I recently posted an article to an online chronic pain support group about the CDC’s opioid prescribing guideline.

“For treating acute pain, the guideline recommends a quantity no greater than what is needed for the expected duration of pain severe enough to require opioids, specifying that three days or less will often be sufficient and more than seven days will rarely be needed,” the guideline states.

It makes sense to me. And I assumed that would be the response my post would get. The recommendation is only for treating acute pain and acute pain shouldn’t need chronic, long term opioid treatment.

Instead, the replies were quick, angry and knee jerk:

“How dare they decide what and how many we need? This will hurt chronic pain patients.”

“They always come after us. These may be for acute pain patients, but you just know more draconian guidelines are just around the corner for chronic pain patients.”

The CDC guideline does not say, “And no one, even if their acute pain continues longer than 3 or 7 days, will be able to get the pain meds they need.” But that was how it was interpreted.

And then the people replying went one step further: “Soon they will be writing guidelines that even those in chronic pain can only have opioids for a specified period of time and a specific dosage, and not one grain more or one day longer.”

I see this common response and reaction as a major issue. When any new guideline is proposed (and people forget these are guidelines, not absolutes), it is a major catastrophe: “They are coming after us.”

Too often we act in a way that appears akin to addictive behavior. We have to have our opioid medications. And any restriction, even when it is not related to chronic pain, is one restriction too many: “They are going to take away my drugs. Then what will I do?”

We seem to have lost the concept of consideration. No time is taken to think through the new suggestions. Instead it is an immediate jump to: “This will hurt me. I won't be able to get the meds I need.”

For many of us, opioid medication is all that is left or the only option. The idea that someone, especially the government, may rip them from us is truly terrifying.

But I wonder. Maybe if we did not take any and all new guidelines as a frontal attack on us, maybe we would not be seen and referenced so often as a major component and cause of the “opioid epidemic.”

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.

Civil Rights Case Gives Hope to Pain Patients

By Richard Dobson, MD, Guest Columnist

People with chronic disabling pain frequently complain that doctors discharge them from their practice because of the medications they take. Sometimes doctors refuse to accept patients who are taking opioid pain medications, even though the medications treat a legitimate medical condition.

There may be hope that such actions will be considered violations of the civil rights of patients.

This week the Civil Rights Division of the Department of Justice (DOJ) signed a formal agreement with Selma Medical Associates, a large primary care practice in Virginia, that may open the door for people with chronic pain to regain their full access to medical care.

Selma Medical refused to schedule a new patient appointment for a man who was taking the addiction treatment drug Suboxone. He filed a civil rights complaint asserting that his rights were violated because has a disability.

According to the complaint, Selma Medical “regularly turns away prospective new patients who are treated with narcotic controlled substances such as Suboxone.”

The DOJ and Selma Medical settled the complaint out-of-court. The full agreement can be read here.

In essence, Selma Medical agreed to stop discriminating on the basis of disability, including opioid use disorder (OUD). The settlement identifies several specific ways that Selma Medical was violating the civil rights of people with disabilities.

“By refusing to accept the Complainant for a new family practice appointment solely because he takes Suboxone, Selma Medical discriminated against him by denying him the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of Selma Medical.

By turning away the Complainant and other prospective patients who are treated with narcotic controlled substances, including Suboxone, Selma Medical imposed eligibility criteria that screen out or tend to screen out individuals with OUD.

Further, Selma Medical failed to make reasonable modifications to policies, practices, or procedures, when such modifications are necessary to afford such goods, services, facilities, privileges, advantages, or accommodations to individuals with disabilities.”

In the agreement, Selma Medical agreed to stop discriminating now and in the future. The staff and administration are also required to undergo intensive training on the implementation of the Americans With Disabilities Act (ADA).

Importantly for pain patients, the agreement applies to people taking “narcotic medications” for any reason and is not limited to people who are taking Suboxone for OUD. The agreement does seem to imply that people taking opioid medications also have their civil rights violated if they are refused medical care on the basis of their diagnosis and their use of opioids.

A former staff attorney in the DOJ’s Civil Rights Division agrees.  

“This formal settlement agreement from DOJ affirms that discrimination in access to medical treatment based solely on an individual’s use of a particular medication — in this case, a narcotic controlled substance — may violate the law,” says Kate Nicholson, a pain patient and civil rights attorney who helped draft federal regulations under the ADA.

Anyone who has chronic pain and who is discharged from a practice or refused admission to a medical practice should let the medical staff know that this is a violation of the ADA. Show them the agreement between Selma Medical and the DOJ. Then if the medical practice still refuses care, file a formal complaint with the Office of Civil Rights. Instructions on filing can be found here.

As part of the settlement agreement, Selma Medical had to pay $30,000 to the complainant for “the discrimination and the harm he has endured, including, but not limited to, emotional distress and pain and suffering.” Selma Medical also had to pay a civil penalty of $10,000.

It seems to me that the substance of this agreement gives real hope to the chronic pain community that discrimination based on disability, even if the disability is based on pain, is illegal and violates their civil rights.

Richard Dobson, MD, worked as a physician in the Rochester, New York area for over 30 years, treating and rehabilitating people suffering from chronic pain, mostly as the result of work or motor vehicle accidents.  He is now retired.  

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.

Memories, Medications and Hospital Horrors

By Tom Parker, Guest Columnist

Some things you never forget. Your mother’s love, your favorite teacher, your first home run (oh, that’s right, I’m 61 and that still hasn’t happened yet), your first date, your first kiss and your wedding.

Christmas to the Parker family is also memorable for many reasons. My delightful wife and I have always sought to make Christmas a precious time for our family. We listen to Christmas music off and on throughout the year, but nonstop in the fall and winter. Bing Crosby and Karen Carpenter mellifluously bless our home with the glorious sounds of Christmastime.

So why do I not remember a season of joy that just ended a month ago?

For several weeks, I had been experiencing pain and an inability to fully empty my bladder. I have quite a few health problems, so I just chalked this up as just another one and pretty much ignored it as it continued to get progressively worse.

My wife and son were on a long trip to take my youngest daughter back to college. I was home alone and finally felt the need to call my doctor about the urinary retention. My doctor’s sagacious nurse urged me to immediately go to the ER, so I called for an ambulance.

I was in St. Peter’s Hospital in Albany for almost a week while an interminable number of tests were conducted to determine what was wrong. I was not allowed any of my normal medications, pain or otherwise, or food or liquids while the initial tests were conducted. Nothing whatsoever passed my lips.

TOM PARKER

When my normal medication regimen finally resumed, I found out very quickly that I had to specifically request an oxycodone tablet when meds were dispensed or I wouldn’t get one.

Which leads me to very distinct memories of my roommate for the rest of my stay. A very brawny young man of 30 or so, a massively-muscled professional bodybuilder, was wheeled into the room and into the next bed. He was just out of elective bilateral double knee replacement surgery. Forgive me for listening as his mother and wife conversed waiting for him to come out of anesthesia.

PNN readers are all too acutely aware of how pain medications are no longer properly given for serious conditions -- which would seemingly include bilateral double knee replacement. As my compatriot emerged from anesthesia, it was very audibly obvious that he was quite understandably in unimaginable agony. Multiple nurses and techs rushed in and out, and at one point a resident was summoned as the young man was having difficulty breathing.

There was serious conversation about rushing him back into surgery when I heard a loud thump. My roommate had hit his head against the headboard, knocking himself out. His relatives argued with the nurses and resident about what pain medicines should be administered during his recovery.

We live in an ungodly, strange and insidiously cruel perverse world!  When medical professionals seriously consider Tramadol as the most viable and appropriate medicine at such a time, we have reached a new low standard of medical barbarity in these United States of America.

Paging Dr. Sessions, paging Dr. Sessions….

Yes, Tramadol is a somewhat effective pain reliever for some people. But for an operation as critically complex as bilateral double knee replacement surgery?   It never was effective for me and it engendered extreme vomiting for several days.

The agonized screams of that young man over three days still haunt my sleep today -- hopefully, not again tonight.

All of us are familiar with the 1 to 10 pain scale and how it often seems wholly inadequate for describing the pain that many of us feel every day. When the young fellow awoke from his self-induced head to the headboard knockout, he was asked what his pain level was at that moment. Three numbers unmistakably rang out, loud, clear and true: “555! What the blank do you think?”

His anguish was finally lessened by multiple doses of Dilaudid, both orally and intravenously. He was also administered Celebrex for inflammation, and oxycodone. I was a very personally-interested witness to this for several days.

He and I left the hospital at almost the same time, me to go home with my beloved, and he to a rehabilitation facility nearby. His last pain attestation before leaving was “10 or 12.” I was utterly appalled to hear him say that “I will do it all over again” if he were unable to resume his bodybuilding career after rehabilitation.

Well, I have had my follow-up visit with my GP now. He renewed my oxycodone prescription without even asking me about it. For that, I am eternally grateful to God and to my kindhearted physician. He explained to me that he was very glad that I had listened to his nurse’s urging to go to the ER.

I asked him, “Why are my memories of Christmas just a month ago so very foggy?”

It was then my physician made it very clear to me, for the first time, that I had almost died from blood poisoning and kidney failure.

Tom Parker was born in beautiful Charleston, South Carolina. He currently lives in the Albany region of frozen upstate New York with his wonderful Vermont wife of 30 years, Kelly Sue. They have four adult children. Tom has multiple spine problems, including severe cervical spinal stenosis, osteoarthritis, and was born with just one kidney.

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.

How Government Shutdowns Worsen the Opioid Crisis

By Lynn Webster, MD, Guest Columnist

On October 26, 2017— a little bit more than a year ago — President Donald Trump declared that the opioid crisis was a national Public Health Emergency. Most Americans seemed to back his initiative to stop opioid abuse, and to reduce drug supply and demand.

However, it seems the recent 35-day government shutdown and Trump's desire to build a border wall have been at cross-purposes with his concern about addressing the opioid crisis.

Two key aspects of Trump’s opioid plan were prevention and treatment of opioid use disorder. Prevention, in part, means reducing the supply. However, everything in the supply is not equally problematic.

Opioids fall into two major categories: those that are prescribed and those that are smuggled into the United States. The number of overdoses associated with prescription opioids has remained essentially unchanged since 2011, while the number of opioid overdoses due to illicit fentanyl and other synthetic opioids surged from 3,000 in 2013 to more than 29,000 in 2017. Most of these drugs originate in China.

One of Trump's major arguments for building a wall is that most drugs that kill Americans are coming over the southern border from Mexico. However, that conflicts with the final report of his opioid commission, which found that "we are losing this fight predominately through China."

Mexican cartels do smuggle illicit opioids across the southern border in passenger vehicles and tractor trailers, often at legal points of entry. Heroin and fentanyl are also smuggled into the U.S. by sea and air or through the mail. A physical barrier doesn’t block any of these types of entry.

The U.S. Food and Drug Administration (FDA) is tasked with inspecting mail to prevent drug smuggling. Before the government shutdown, FDA Commissioner Scott Gottlieb was calling for more postal inspectors to intercept shipments of opioids. He wanted the government to be able to inspect 100,000 suspicious packages per year, but that would have required double the number of personnel that he had.

Government shutdowns handicap those efforts because it is difficult to hire during shutdowns. It can be challenging just to retain the employees you already have.

The Department of Homeland Security works with the U.S. Coast Guard and the U.S. Customs and Border Protection to patrol the South Pacific Ocean and the Caribbean Sea to stop drug smuggling. These efforts may have been impeded during the shutdown, because some of these "essential" employees had to decide whether to work without pay or call in sick. We can assume that some of them chose the latter course of action. Some government employees may be looking for other jobs because they want a reliable paycheck.

Ironically, due to increased scrutiny at the border, drug smugglers have gotten more creative, increasing their use of tunnels, boats, air and even catapults. These efforts may have been more successful due to the lack of personnel guarding trouble spots because of the shutdown.

Addiction Treatment Impacted

Government shutdowns increase the likelihood that opioids could find their way past our borders. And our ability to treat people with opioid addiction may also be compromised.

Providing treatment for addiction was the other important part of Trump's plan for addressing the opioid crisis. An estimated 2.1 million people had an opioid use disorder in 2016, yet only about 20% had access to treatment. One of the reasons so few people are treated is that not enough clinicians are trained and certified to treat opioid addiction. The president's initiative requires increasing the number of clinicians certified to treat addiction.

Buprenorphine (Subxone) is one of the tools physicians use to treat opioid use disorder. Doctors require special training and certification to prescribe the drug, as well as a waiver from the Drug Enforcement Agency. During the government shutdown, the DEA was still able to review doctors’ applications, but there were about 30% fewer certifications than there were before the shutdown. It is unclear if that was due to the shutdown or not.

Regardless of whether there will be a physical wall on our border with Mexico, we can see the potential damage that the recent government shutdown can have on curbing the opioid crisis. Congress will now discuss the merits of various options to secure the border, and President Trump is threatening another shutdown if a border wall isn’t funded.

But one thing we should take away from the recent experience is that there isn't much point in saving ourselves from illegal immigrants if we can't protect ourselves from the dangers posed by a government shutdown.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine. Webster is the author of “The Painful Truth: What Chronic Pain Is Really Like and Why It Matters to Each of Us.”

You can find him on Twitter: @LynnRWebsterMD. 

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.

A History Lesson of the War on Drugs

By Iris Erlingsdottir, Guest Columnist

One hundred years ago this month, the 18th Amendment to the U.S. Constitution was ratified, prohibiting the production, transport and sale of "intoxicating liquors.” It cleared the way for the Volstead Act, which declared that liquor, wine and beer all qualified as intoxicating liquors.

Prohibition – the first War on Drugs -- was on.

The U.S. government has never been above abusing its citizens in the name of fighting drug wars. Then, like now, government efforts to legislate the human condition were a losing, deadly battle. In today’s war against opioid addiction, it is patients on the receiving end. A century ago it was drinkers.

Alcohol deaths only increased during Prohibition, as Deborah Blum recounts in her 2010 book, “The Poisoner’s Handbook.”

Policymakers believed poisoning the alcohol supply was an acceptable way to stop people from drinking. Methanol was added to industrial alcohol to make it unfit for human consumption, but bootleggers found ways to distill the poisoned alcohol to make it drinkable.

The government responded by adding even more toxic chemicals, like gasoline and kerosene. And bootleggers kept stealing the increasingly dangerous alcohol and turning it into liquor.

At the start of Prohibition, New York City’s Bellevue Hospital treated about twelve annual cases of moonshine and wood alcohol poisoning. About a fourth of those were fatal. By 1926, the hospital treated 716 people for blindness and paralysis due to poisoned alcohol. The holiday season that year was especially deadly. On Christmas Day alone, 60 people were treated at Bellevue for alcohol poisoning and eight died from it. By New Year’s Day 1927, 41 people were dead.

Prohibition-era statistics are notoriously unreliable, but according to some estimates over 10,000 Americans died during Prohibition from the effects of drinking poisoned liquor, courtesy of both government and organized crime chemists. Many more were blinded. Prohibition’s attempt to foster temperance instead fostered intemperance, along with violence and crime. The solution the government had concocted to address alcohol abuse had made the problem worse.

Act of Betrayal

“There is no Prohibition,” New York City medical examiner Charles Norris said in an angry report about the alcohol deaths. “All the people who drank before Prohibition are drinking now — provided they’re still alive.”

Norris and his staff considered the government’s deliberate poisoning of alcohol an “act of betrayal.” They weren’t accustomed to having their national government adopt a policy known to kill people.

Policymakers in the 21st century have few such qualms about the opioid crisis. Nor does the media, which continues to parrot the government’s blatantly misleading propaganda, blaming illicit fentanyl and heroin deaths on prescription opioids.  Just as thousands died from alcohol poisoning during Prohibition, opioid hysteria has had horrible consequences for millions of patients doomed to suffer torturous pain because of irresponsible journalism and the policy blunders it enables.

Many of the nation’s largest Prohibition-era newspapers, however, didn’t hesitate to condemn a government policy “gone haywire.”

“Prohibition in this area is a complete failure,” the New York Herald Tribune’s editorial page declared, “enforcement a travesty, the public a victim of poisonous liquor.”  The Evening World said no administration had been more successful in “undermining the health of its own people,” while The St. Paul Pioneer Press called the government an “accessory to murder.”

Perhaps the Chicago Tribune stated it best: “It is only in the curious fanaticism of Prohibition that any means, however barbarous, are considered justified.”

It’s a sentiment that applies just as aptly to today’s epidemic of opioid hysteria.

Íris Erlingsdóttir is an Icelandic journalist and writer who lives in Minnesota. Iris has a rare, untreatable arthritic condition that causes severe pain and progressive destruction of the joints. She became an advocate for pain patients’ rights after being denied continued opioid pain medication.

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.

How Hollywood Romanticizes Addiction

By Lynn Webster, MD, Guest Columnist

We all love good storytelling. Cinema can mirror the real world or create a universe of its own. Movies can transport us to another world, beyond ordinary consciousness and emotions. They can be an agent for positive cultural change, or they can spread false narratives that are largely adopted by society. They can help solve our problems, or they can exacerbate them.

Two films that were released this past year -- "Ben Is Back" and "Beautiful Boy" -- are examples of movies that tell heart-wrenching stories, but fail to provide solutions. Instead, they reinforce unhelpful narratives that we glean from the news media and politicians.

Both are mainstream films with wide distribution and built-in audiences due to their talented casts and subject matter. They both tackle a theme that often works well for Hollywood: a child in life-threatening danger.

Each of these films focuses on the drama of a troubled young person who struggles with addiction. In both cases, the addiction creates a tragedy that feeds a romantic thread.

As a frequent film goer, I appreciate both movies' artistic delivery. However, their messages don’t necessarily reflect the realities of addiction in America. The movies perpetuate stereotypes and demonstrate that the color (pun intended) of addiction matters.

Through both of these films, Hollywood provides viewers with romantic views of addiction that are played out as love stories between parents and their children.

Josephine Livingstone, culture staff writer at The New Republic, recently wrote, “To make a movie about drugs almost guarantees that you romanticize them, because otherwise there would be no narrative at all -- just long nights, empty bank accounts, and a feeling like cold hunger.” 

COURTESY ROADSIDE ATTRACTIONS

"Ben is Back" stars Julie Roberts as the loving but frightened mother and Lucas Hedges (Ben) as a young man in an upper middle-class white family.

Ben is polite and likeable. His only apparent flaws are the behaviors associated with his addiction to opioids. The audience is primed to wonder how this could happen to an All-American boy. This young man and his family surely couldn't be responsible for the problem. 

The film poignantly blames a senile physician for initiating the boy’s addiction years earlier by prescribing Ben an opioid following a painful injury. The doctor is portrayed as the villain who pushes Ben toward a path of destruction. 

This works because the characters in "Ben Is Back" are of the same demographic and ethnicity as most of the viewers who would watch the movie. The film reinforces the clichés the audience has come to believe about addiction and its etiology. 

History tells us that poor inner-city minority members, by contrast, are usually blamed for their addictions. If the film starred a black or brown young man, the plot would have likely focused on the criminal activity and character flaws of the drug abuser. 

Julia Roberts told USA Today that she was able to relate to the problem of watching a family member suffer from addiction because, in real life, her older brother had suffered from the disease. However, Roberts acknowledges, "The position of the mother in this film is very different from a sister," reinforcing the parent/child love theme.  

The other film, "Beautiful Boy," is based on a true story. In contrast to "Ben Is Back," the movie is about a relationship between a father and his son. Steve Carell and Timothée Chalamet (Nic) play the father and son. As Rolling Stone says, "It’s the two leads who, thanks to their astonishing, ripped-from-the-guts performances, make this movie a standout." 

Nic has a great relationship with his father. The father introduces his son to marijuana, which the movie inaccurately suggests is the seed to Nic's eventual use of methamphetamine.  

The story is told from the father's point of view. The father blames himself because he buys into the myth that marijuana is a gateway drug. Unfortunately, many movie goers probably also inaccurately believe that using marijuana could lead to meth addiction. 

Meth is not an opioid. However, the story line is similar to that of "Ben Is Back." Nic is a good white kid from a loving home, but he, too, is caught in a web of addiction. 

While Nic's story is emotionally riveting, we know that he lives a privileged life. Like Ben, Nic is a sympathetic character.   

COURTESY AMAZON STUDIOS

These two movies blame outside causes for addiction. The movies fail to explore the real motivators to using drugs. Both characters acknowledge, in a discreet and almost offhand way, that they use drugs to feel alive. This subtlety is a huge statement. It describes the reason for their drug use that most viewers probably miss. 

Why should these two movies matter so much to us?  

These films may be entertaining, but they fail to tell the true story of addiction. Addiction is not sentimental. It is a tragedy, regardless of color. There are no tidy endings in real life. Propagating misleading narratives about addiction has made it more difficult for people in pain to be treated. 

If Hollywood producers are going to make films about addiction that don’t feed false narratives, they will have to stop romanticizing addiction.  

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine. Webster is the author of “The Painful Truth: What Chronic Pain Is Really Like and Why It Matters to Each of Us.” You can find him on Twitter: @LynnRWebsterMD. 

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.

How to Check Out a Charity Before You Donate

By Stefanie Lee Berardi, Guest Columnist

Many of us have been following PNN’s reporting on the misuse of donated funds by the former CEO of the U.S. Pain Foundation. Paul Gileno allegedly misappropriated about $2 million for his own personal use from the non-profit from 2015 to 2017.

The acting CEO and chair of U.S. Pain’s board of directors has admitted that a lack of financial oversight enabled Gileno to commit his misdeeds. Nicole Hemmenway says the board has instituted “a robust system of checks and balances” to make sure it doesn’t happen again.

As the story continues to unfold, U.S. Pain has attempted to refocus the public’s view of this fraudulent activity by claiming that 2018 was “its most successful year of programs and services,” while also indicating that additional financial irregularities may be reported on its 2018 tax return.

Arguably, their claim of success does not comport with the facts and does not enumerate the numerous failings of the board and senior staff that enabled the fraud to continue for years. Until there is full disclosure of what happened and people are held accountable, the public cannot be sure that U.S. Pain’s resources are being utilized effectively going forward.

Choosing to support a non-profit organization is an investment. And those of us who give our limited time and money to a charity must protect that investment by learning all that we can about what the organization does, what senior staff they employ, where they get their money and how they spend it.

It is not always easy to find reliable information about a non-profit, but if you know where to look, a short online search can give you a wealth of information. Here are some tips that donors and volunteers may want to explore.

Search Their Website

Consider an organization’s website as the front door to its operations and core mission. A disease-related organization’s mission, for example, might be to provide support for those affected, education about the disease, and research to find a cure.

An organization must be accountable and transparent to its investors. Their website should provide an annual report of its accomplishments from the previous year and goals for the next. You will need to review several annual reports to evaluate if the organization is making progress on the previous years’ goals.

Look at Their Tax Returns

Examine the organization’s tax returns to learn about how they operate, where they get their funding, and what proportion of their money is spent on programs that actually help people versus overhead costs like administration, salaries and fundraising.

There are a few exceptions, but most non-profit organizations’ tax returns are public information, meaning anyone can inspect them. When you compare two or three years of the organization’s tax returns, you can get a sense of the organization’s financial stability over time.

I find ProPublica to be the easiest place to find these documents. You can also search an IRS database to see if an organization’s tax-exempt status is in good standing. If a non-profit misses a tax return filing deadline, as was the case with U.S. Pain, that could be a sign of trouble.

Identify Their Funding Sources

In order for a non-profit to remain financially healthy and compliant with IRS regulations, it must seek funding from different types of revenue streams, such as grants and corporate or individual donations. For example, an organization may accept donations from pharmaceutical companies or charge membership dues or fees to attend their events.

Investors need to know where the organization gets its money. If the organization is growing and thriving, you will see a steady increase in the money they bring in (revenue); the money they spend (expenses) will remain proportional to their revenue; and their bottom line (net assets) will remain stable from year to year.

Learn Where They Are Spending Their Money

There are well-established benchmarks for how much of a non-profit’s budget should be spent on programs versus administration and fundraising. Organizations should be spending at least 75% of their revenue on programs that raise awareness or directly benefit a cause and less than 25% of their revenue on overhead.

As a reference, Charity Navigator publishes an annual report on CEO pay that finds mid-sized non-profits pay their CEO’s in the low $100,000’s. And the Better Business Bureau’s accountability standards indicate that fundraising expenses should not exceed 10 to 25 cents of every dollar raised.

As an investor, we want to see these figures as low as possible and to ensure they are aligned with organizations of similar size and type.

Engage with a Non-Profit at All Levels

If an organization is worthy of receiving your financial support, it should also be worthy of receiving your time and talent. Volunteering for the organization is an important way for you to increase the value of your investment. Most non-profits depend on volunteers to help them run programs, raise funds and promote awareness.

When you find the right organization, consider pledging a monthly, rather than a one-time annual donation. Large foundations that offer grants to non-profits want to see repeat donations because it is an indication of a healthy, growing organization that is capable of using their grant money effectively. Staying involved with an organization helps ensure your investment is used to its fullest potential.

There is simply too little time and money to waste on an organization that lacks oversight and is not using its resources effectively. Many of us have made donations to organizations simply because they asked and believed they were doing good things. In the future, we must raise that benchmark.

When nonprofit organizations solicit for financial support, they are in a position of public trust. That money is not theirs to misuse and they should be held accountable if they lose that trust.

Each of us has the responsibility to learn everything we can about an organization before we offer our time, talent and money. We must advocate for each other and contribute to the body of knowledge about the organizations that we support. 

Stefanie Lee Berardi worked as an advancement and communications professional, grant writer and principal investigator of several multi-agency grant programs at Illinois State University. She has a graduate degree specializing in the management and administration of non-profit organizations.

Stefanie is an avid volunteer in her local community and has volunteered for organizations supporting individuals with Complex Regional Pain Syndrome, a disease she developed in 2008.

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.

Climbing Mountains Together

By Mia Maysack, PNN Columnist

Just about every time I'm in the bathtub, I contemplate slipping my head under water for a tad bit too long.  I do not consider myself suicidal, nor do I really want to die in the literal sense. But sometimes I reach a point when I'd do almost anything to kill this pain.   

Current situation: At least 30 cluster headache attacks thus far this week. Constant migraine going strong for about two weeks. Ongoing fibromyalgia flares. Working to pass kidney stones induced by stress and dehydration. Nausea, dizziness, fatigue and exhaustion have latched onto my soul like draining parasites. None of my go-to treatments have eased any of the discomfort.   

Despite my own battles, I consistently make myself available to others in the thick of their own private storms. The world needs more light and I can always use a distraction from my own body self-destructing. Win/win.  

Recently I did what I could to talk a loved one off the ledge. This person is also unwell but in a very different way. Their infliction is not physical, but boils down to their own personal choices.  

You might imagine the frustration I feel when surrounded by others who could save themselves from drowning simply by standing up.

All the while, I've been standing strong for years but consistently get swept away by overwhelming undercurrents that are entirely out of my control. 

It can be difficult to encourage others to live when you're barely hanging onto a shred of hope for yourself. But I consider myself honored for the opportunity to try.  

I cannot keep track of how many times I've had to “die" in a figurative sense so that I could grieve the losses of countless aspirations, ideas, goals and dreams.  I've always been known as a positive person and that's most definitely who I am.  It is not an act, but people tend to think it’s easy for me and they couldn't be more wrong. 

It takes absolutely everything I have to lay my head down at night, knowing I'll awaken to the same demons I spent the previous day slaying. And that it'll likely remain this way, forever.  

My positivity began out of necessity and is a method of survival. Relentless pain every single day for 20 years straight is enough for anyone to question their sanity or possibly even lose it. As a matter of fact, we're currently mourning the medically assisted suicide of a fellow Pain Warrior, who endured similar pain for the same amount of time.   

I felt the need to write this so that others do not think they are crazy. Under our circumstances, it's understandable we might fantasize about no longer feeling this way. The mantras, positive quotes and clichés can only get us so far, and it can be downright devastating to not have adequate support, acknowledgment, validation or pain relief.  

I also had to write this because I want to convey that you are all the main reason why I still hold on. Knowing there's a community of others who truly get it, provides me with a purpose and reason to get myself out of bed in the morning.

It has become my mission to demonstrate that these mountains of misfortune aren't meant to be carried, but they can be climbed. They might even be moved if we all work together.   

No one can give us quality of life or the will to live outside of ourselves, but we can lean on one another during our deepest and darkest moments of despair. It's okay to have bad days, to be in a negative headspace, to question the purpose of all this, to feel angry, hurt or sad.  

As I envision the water calming my ailments and swirling its way down the drain, I think about the possibility of someone reading this at a time they needed it most. That thought gives me the strength I need. 

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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.

National Safety Council's Misleading Report on Opioids

By Roger Chriss, PNN Columnist

This week the National Safety Council released a report claiming that “for the first time on record, your odds of dying from an accidental opioid overdose are greater than dying in a motor vehicle crash.”

Media outlets from The New York Times to NPR were quick to repeat that claim.

“The opioid crisis in the United States has become so grim that Americans are now likelier to die of an overdose than in a vehicle crash,” The Times reported.

This is incorrect. The average American is vastly more likely to die in a car crash than of an opioid overdose. The reason is simple: the typical American does not have any opioids to overdose on.

Good practice in epidemiology and public health research is to look at the “population at risk.” This population represents those people who would be counted if they are affected by whatever risk is being studied.

The population at risk for opioid overdose consists of people exposed to opioids, intentionally or otherwise. Within this population are people with varying degrees of risk, from low-risk in the form of a single dose of opioid medication in a hospital to high-risk in the form of heroin injection.

By contrast, the population at risk for car crash death is people who are exposed to car rides, whether as drivers or passengers. Needless to say, this is a very broad population that includes most Americans.

These two populations are not the same. There is some overlap between the two, but that does not mean they can be lumped together for the purpose of a generalized conclusion. Instead, epidemiological investigations look at a target population, that is to say the group of people about which conclusions will be drawn.

Again, these are distinct populations. The target population for reducing car crash fatalities is not the same as the target population for reducing opioid overdose fatalities.

As a result, a general comparison between the odds of dying of an opioid overdose versus a car crash is not statistically meaningful. Moreover, such comparisons misconstrue risk management and may lead to poor allocation of resources.

For instance, in 2017 there were 2,008 fatal overdoses with Benadryl and 1,250 with tramadol, according to the CDC. But this does not mean that Benadryl is more dangerous than tramadol. Far more people use Benadryl than tramadol, and usually without a prescription or monitoring. Ranking one as inherently more dangerous than the other would not lead to good public health policy.

Further, the risk of opioid overdose rises when people use other substances like alcohol, benzodiazepines or cocaine. Similarly, the risk of fatal car crashes rises when driving under the influence or other risky driving behaviors are involved. Because most people do not do these things, they are at the low end of the range of risk in the population at risk.

State laws like California’s AB 2760 requiring naloxone co-prescribing may help reduce opioid overdoses, but only if they reach people at greater risk. And resources committed to people at low risk may be taking resources away from people at high risk.

So although the National Safety Council’s report may be technically accurate, it is flawed and misleading. Most people are much more likely to die in a car crash because they are exposed to that risk on a regular basis. Only a small number of people are more likely to die of an opioid overdose, and risk reduction strategies need to be directed to them.

The NSC is a nonprofit that promotes itself as a "data-driven organization," but this is not the first time it has provided misleading information about opioids.  As PNN has reported, an NSC memorial to opioid victims that toured the country last year overestimated the number of Americans who overdosed on prescription opioids by about 25 percent.

Good public health policy involves assessing the relative risks for the population at risk and adopting effective harm reduction policies. Sweeping statements that confuse a population at risk with the population at large can only lead to bad policies. And we’ve seen enough of those.  

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.

Limiting Rx Opioids Is Making Opioid Epidemic Worse

By David Hanscom, MD, PNN Columnist

I am an orthopedic spine surgeon who specializes in complex problems in all areas of the spinal column.

Over the last five years, a significant percent of my practice has been addressing spine infections, most of them in patients addicted to intravenous drugs. Bacteria can enter the blood stream from a contaminated needle and lodge in the discs between the vertebrae, which have a limited blood supply. It’s an ideal environment for bacterial growth and it destroys the neighboring discs and vertebra. Often they weaken to the point where they break.

Corrective surgery entails draining the infection and then stabilizing the broken spine with a fusion. These operations are complex, expensive and risky. After surgery there is a minimum of six weeks of IV antibiotics.  Occasionally, a patient ends up paralyzed because the infection cuts off the blood supply to the spinal cord.

One typical case was that of middle-aged carpenter with low back pain, who had been able to work for years by taking a stable low dose of opioid medication. He needed to keep working, so when the local pain clinic shut down, he felt he had no other choice but to use IV heroin. His spine became infected and the infection spread deeply into his pelvis. I met him in the hospital when he was extremely ill, and it took three operations to drain and stabilize his spine.

My experience from this and other cases tells me the opioid epidemic is rapidly getting worse. In addition to the medical problems created from IV drug abuse, there were nearly 49,000 overdose deaths from opioids – both legal and illegal -- in 2017. Unfortunately, there doesn’t appear to be a viable solution in sight. In fact, current efforts to reduce opioid prescribing are exacerbating the problem. Although I agree with more careful prescribing practices, it isn’t the answer to the epidemic.

This CDC graphic tells why. As deaths from prescription opioids leveled off over the past several years, mortality from heroin and synthetic opioids like illicit fentanyl have spiked higher. Although the medical system is decreasing the supply of prescription opioids, it’s pushing people to these illicit sources.  

Chronic Pain and Anxiety

Nearly 90 percent of patients on opioids have chronic pain, while the rest mostly suffer from acute pain. But the mental pain is a far greater problem than the physical pain. Any physical or mental threat causes your body to secrete stress hormones, such as cortisol, adrenaline and histamines to improve your chances of survival.

The sensation created by these chemicals is anxiety. Humans have a major problem when they can’t escape from negative thoughts. Anxiety triggers a sustained chemical assault that we will try almost anything to escape from. This unconscious and automatic survival response is over a million times stronger than the conscious brain.

Research has documented that when you are upset for any reason, your pain will increase. It isn’t psychological or “all in your head.” There’s a direct linkage between pain circuits and stress. You will experience an increased speed of nerve conduction from stress chemicals, causing your pain levels to increase.

Many Treatments Don’t Work

Another problem is that modern medicine isn’t providing viable solutions to chronic pain. A recent survey found that only about 1% of physicians enjoy and are comfortable treating chronic pain.

Modern medicine is only pretending to treat your pain. You go to the doctor trusting him or her to help you and you’re repeatedly disappointed. As your frustration grows, your stress hormones remain elevated and your pain physically worsens.

Even worse, many “mainstream” interventions such as surgery have been demonstrated to be ineffective and often cause harm, while effective treatments are not readily available because they are not covered by insurance. A significant percent of a medical system’s revenue is driven by these expensive and risky interventions.

Instead of exploring ways to implement effective treatments for pain, the government and medical establishment are focusing their efforts on restricting access to pain medications -- with most of the focus being on the providers. Physicians are now afraid to prescribe long-term opioids, even though most of us have had patients thrive on a stable opioid regimen.

This is the worst step that could be taken because patients immediately experience increased anxiety, frustration and eventually anger when they are cutoff or have their doses reduced.

What can we do to solve the opioid epidemic?

First, solve chronic pain! Recent medical research has revealed possible solutions but mainstream medicine isn’t implementing them.

Second, recognize that what drives most people to use opioids is mental pain. Physical pain is often secondary.

Third, environmental factors, especially family dynamics may be exacerbating chronic pain. Allow physicians to take the time to listen to patients and focus on their real problems, rather than just randomly treat their symptoms.

Finally, since the problem is so pervasive, the answers must be widely available and implemented by anyone. 

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

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.

Defining Your Story As a Patient Advocate

By Barby Ingle, PNN Columnist

Almost a year ago, I covered the topic of motivational speaking as a patient advocate for the pain community. A lot of the information I shared dealt with how to plan and organize for advocacy, but the messaging you use is equally important. It must be specific to the audience you’re trying to reach.

I have learned that honing and defining my story is an important aspect of being an advocate. I used to spew it all out and see what sticks, but have learned over the years that when I concentrate on a few key points specific to my audience I will be a more effective communicator.

For instance, when I spoke at a rare disease event, I focused on how rare conditions have impacted me and how more rare disease research and funding are needed. At a cancer event, I spoke about my experiences with cancer and the missing support I see in that area.

There is no specific way to advocate, but there are some basic guidelines that can help get you started. The first step is finding your own voice. You want to have your own message and share your own personal story. You don’t want to copy or act like someone else. I have told newbies, “Don’t try to be me. You be you, and I’ll be me.”

When honing your message, start with deciding what you want to talk about. Sometimes it is important to go wide and broad when talking about chronic pain, but other times it’s important to discuss your most pressing experiences with a specific disease or challenge.

There are thousands of issues that need working on in the chronic pain world, from access to medication to finding a compassionate doctor. Defining the issue that’s important to you is key. You must be able to explain your point of view and back it up with data and science that is relevant and recent.

Keep it simple. Think of 2 or 3 takeaways for your audience. What should the listener walk away knowing when you are done?  In many cases, such as testifying at a legislative hearing, you’re only going to get 2 or 3 minutes to speak. Respect the time limit and practice beforehand so that you can explain and emphasize your takeaways. Leave a few moments for follow up questions.

Remember, you are not sharing your message to prove someone else is wrong or to undermine them. You are there to share your story and the challenges that affect your daily living. I do a lot of reality television, and producers always remind me to only talk about what I want to bring attention to. If I talk about someone else’s message, it takes away from my own. Tell them who you are, how you are affected by a policy, and what can be done to solve it.  

Your personal story should be about you and what you have gone through. If you’re a caregiver whose spouse was put through step therapy and had delays in getting proper medication, how did that affect you?  What did that delay in care do to you? Why do you care about this cause? Let the audience know why you care.

Next, give them the takeaways. There should always be “an ask.”  What do you want your audience to do for you?  A state legislator may be voting on a specific bill that you want them to support or vote against. Or tell your audience how they can help spread awareness and advocacy.

Keeping the requested action positive is important and keeps it moving in society. You could ask other patients to discuss an issue with their friends or to be sure to vote. You can ask for just about anything, but be as specific as possible. If you are asking for others to make a change or believe in something you advocate, then you must show some expertise on the topic.

Understand that some words are trigger words that should be avoided. Instead of talking about how hard it is to get “opioids” or “narcotics,” say patients need better access to “pain medication.” They are all descriptors of the same thing, but have very different meanings and connotations.

It takes a lot of courage to share health topics and challenges we’ve been through. Many advocates, including myself, are ridiculed and shamed. PNN had a great column on this last month, “Stop Shaming Pain” by Mia Maysack. As Mia explained, you may encounter negativity even within our own pain community.

Your story should take others on the journey you’ve been on. Think about how you want your audience to feel and what your end goal for them will be. Being yourself, being vulnerable, and sharing your story are powerful ways to engage the public and create change.

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.

The 7 Golden Rules of Opioid Prescribing for Patients

By Jeffrey Grolig, MD, JD, Guest Columnist  

“Don’t do it!” is the advice often given to brand new physicians about whether to specialize in pain medicine. Increasing numbers of doctors are being fined, disciplined or arrested due to scrutiny caused by the nation’s opioid crisis. Every single opioid prescription, even the mildest painkiller, is being tracked, and prescription drug database searches tell the DEA and state board investigators who to watch.  

The unfortunate innocent victims of this crisis have been those legitimate patients who suffer in chronic pain, with up to 100 million in the United States alone. Each time a physician or pharmacy is attacked, thousands of pain patients must pay the price.

A pharmacy in my northern California town recently closed after the owner was charged with 200 counts of failing to properly keep records. Each count carries a $20,000 fine.

A local physician’s license was restricted for failure to warn in writing about the risks of combining sleeping pills with opioids. This family physician had already spent $56,000 in legal fees for previous documentation lapses.

A pulmonary specialist with English as his second language was arrested for prescribing codeine-containing cough syrup to four undercover DEA agents posing as patients. He is facing 20 years in prison and $2 million in fines.   

I still accept pain patients, but my background as an attorney compels me to use “universal precautions,” something I advise every physician who prescribes opioids to do. This boils down to following what I call “The 7 Golden Rules of Opioid Prescribing.” If you, as the patient, understand that your doctor must follow these 7 golden rules, it will make it much easier for you to obtain excellent pain management, including opioids.  

I developed the 7 golden rules by analyzing the most common documentation lapses of doctors who were disciplined or prosecuted. I included them when I wrote the “Physician Primer: Prescribe Like a Lawyer” to empower doctors to think and practice like a lawyer and not lose their careers over simple documentation errors.

If you write a cover letter like the one below to your current or prospective physician, touching on each and every one of these 7 golden rules, your pain control will vastly improve, I promise. 

Dear Doctor,

#1 I have a legitimate medical reason for needing opioids. My medical diagnosis is… (be specific: examples include diabetic neuropathy, failed spine surgery, spinal stenosis, CRPS, etc.). Attached is my MRI report (or EMG, CT, X-ray, Bone Scan, lab test, etc.) proving this.  

#2 I am not now, nor have I ever been addicted to prescription medication, illegal drugs or alcohol.   

#3 I have no depression, psychosis or bipolar disorder.  

#4 I understand all the risks of opioids and related medications, as well as my options for all non-opioid alternative treatments.  

#5 I am not taking benzodiazepines and drinking alcohol.  

#6 I have attached my last 12 months of medical records (not applicable if you have been with the same physician for one year).  

#7 These records reflect that I am an honest, compliant and responsible patient.  

Respectfully,  

Pain Patient

If you do not meet these criteria, it means you are in a higher risk category and would be better managed at a university medical center or a teaching hospital. To my knowledge, the DEA or state medical board has never raided a teaching hospital or university medical center. 

The best way a patient can signal to me they are responsible and low risk is to write a letter covering each of the 7 golden rules, attached to one year’s worth of medical records. This essentially does my work for me, and it makes it easy for me to decide whether or not to accept the patient.

If your doctor still won’t budge, hand him my free “Primer Flyer,” a pamphlet that explains risk management, that’s available on my website: ​ThePhysicianPrimer.com​.

If all else fails, have him watch my YouTube video on The 7 Golden Rules of Opioid Prescribing for Doctors. 

Jeffrey W. Grolig, MD, JD, is a board-certified specialist in Physical Medicine & Rehabilitation. He has taught at UC Davis Medical Center in both the departments of Family Practice and Physical Medicine & Rehabilitation. Dr. Grolig has formerly worked as a licensed attorney and has authored 6 books.

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.

Scrambler Therapy Helped My Daughter Walk Again

By Reggie Greening, Guest Columnist

Beginning in August 2017, my daughter Amanda began having severe pain in her left foot after spraining her ankle. She was 20 years old at the time and described the pain as feeling as though her bones were being crushed by a red-hot anvil.

Over the next few months, Amanda started having more and more symptoms. It began with sharp pain, then discoloration, and severe swelling set in. This was about the time when she stopped being able to walk and had to be put on opioid medication in an attempt to manage the pain.

The bone crushing sensation began around the end of September, followed closely by burning pain. Amanda was still unable to walk and was taking opioids every four to six hours like clockwork. No one could figure out what was wrong or how to manage the pain other than with opioids.

While attempting to get a diagnosis, Amanda went through many rounds of testing. She had multiple x-rays, two MRIs (one with contrast dye injected intravenously), a three-phase bone scan, a nerve conductivity test, and two phases of bloodwork examined. She also went to a plethora of doctors, including a podiatrist, orthopedist, rheumatologist, dermatologist, physical therapists, homeopathic physician, chiropractor, pain management doctor, and a general medicine doctor.

The podiatrist and one of her physical therapists suspected Complex Regional Pain Syndrome (CRPS), and her podiatrist was the one who eventually determined the diagnosis of CRPS on February 16, 2018.

This spurred my research to find a more sustainable treatment option for Amanda. I spent hours searching online before discovering Scrambler Therapy.

I found a physician in New Jersey who posted videos on YouTube about Scrambler Therapy (also known as Calmare Pain Relief Therapy) and its benefits for those suffering with CRPS and other chronic nerve conditions.

We live in Louisiana, so I looked for a doctor who had a Scrambler Therapy machine closer to our home state. I eventually found a doctor in Dallas who has a machine in his office.

Amanda’s first round of treatment was administered by an osteopathic doctor in March 2018. After the fourth consecutive day of treatment, she was able to walk with the aid of crutches for the first time in seven months. The next day, after her fifth treatment, Amanda was able to walk independently. By the end of her initial round of treatment, she was entirely off opioids and NSAID pain relievers.

Our local TV station did a story about Amanda’s recovery.

Right now, the Scrambler treatment is not covered by insurance and payment for it adds up rather quickly. I am trying to get this therapy more widely acknowledged and known about so that it may become an option for others suffering with chronic neuropathic pain.

I have seen the benefits of Scrambler Therapy firsthand in my daughter. At the time of this writing, Amanda has been off opioids for two months and has been able to maintain the benefits of the initial treatment through booster treatments as needed.

Scrambler Therapy has the potential to help not just those suffering from CRPS (for whom pain relief often seems distant and hopeless), but also for those suffering from other neuropathic pain conditions.

The Greening family lives in Shreveport, Louisiana.

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.

A Pained Life: My New Year’s Resolution

By Carol Levy, PNN Columnist

I am visiting at my sister's house. This was 38 years ago, but I still remember it and feel the hurt and pain as though it was yesterday.

My 12-year old nephew looks down at my penny loafers. Pointing to the penny in each shoe, he asks, “Are you wearing them to let everyone know how poor you are?"

That idea could only have come from his mother. This was a few years after the trigeminal neuralgia pain started, which disabled me and left me virtually housebound.

Unable to work and having no savings on which to rely (I was 26 at the time), I had to do something I never could have imagined. I went on public assistance. I was embarrassed and humiliated asking for that kind of help. That my family saw it as a black mark only made it that much worse.

In a way though, it was a badge of honor.  Not because I went to the state for help with food stamps and medical assistance, but because I chose to do what I needed to do.

The emotional cost to keep control and be as independent as possible -- in spite of the pain and the disability -- was enormous.  But I did it anyway.

What a good lesson that would have been for my nephew. Aunt Carol had a choice: Go back home and live with her parents (which would have been a calamity for all of us and a loss of my independence), or do what she needed to do to stay in control of her life even though it was very difficult. And she bravely chose the latter.

Instead the lesson learned was: Aunt Carol is poor and we should look down on her.

How many times have we had awful things said to us by family, coworkers, friends and people we turned to for help, only to be held in scorn, derision or plain indifference? And yet we held their “truths” as truths to be held dear.

I remember an Oprah Winfrey show from many years ago. Her admonition was as true then as it is now. Hold onto anger against another and who does it hurt?

They will forget what they said and the anger, nastiness and humiliation they showed us; while we hold onto the hurt and pain their words and behaviors caused.

So, at the end of the day, the one that stays hurt is not them, but us.

It's a new year. My resolution is to let go of all the hurt and pain that others have sent my way. It took me almost 38 years to realize I needed to make this change in my thinking. But, as they say, better late than never.

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.