When I Call Myself Disabled

By Barby Ingle, PNN Columnist

Recently an interesting hashtag started trending on Twitter: #WhenICallMyselfDisabled.

Cassie, a friend who also has chronic pain, sent me a message to make sure that I had seen it. I am so glad she did because it sparked something in me that I didn’t even know I had an opinion about.

There are so many people in the chronic pain community and we all have different disabilities, diseases, genetics, treatments, healthcare, etc. Even people with the same diseases and conditions can have different levels of disability.

There are many legal and governmental definitions of disability. For example, to qualify for Social Security disability, a person must have a physical or mental impairment that has lasted or is expected to last at least 12 months and which prevents them from doing a "substantial” amount of work.  

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The American with Disabilities Act broadly defines disability as a physical or mental condition that substantially limits one or more major life activity.

Often healthy people have a tough time understanding what we live with or the challenges we face on a daily basis. That’s where #WhenICallMyselfDisabled comes in. It can help us explain our own personal definitions of disability and how being disabled impacts our lives.  

The first time I pulled up the hashtag on Twittter, I didn’t plan on sharing it. I was just reading through various tweets when my personal lightbulb went off. When did I start considering myself disabled? How do I define it?

Here’s how I responded on Twitter:

Here's how some people responded to my Tweet:

 It's a life of pure hell isn't it? This is called living???😟😟😥

Oh, I can so relate hun. 💟

Me three. I’m tired & in constant pain. Don’t make me wait in lines, stand at counters, walk stairs, etc. It’s not cuz I’m lazy I gd walked 4,000 miles once! But of course, everyone assumes it’s cuz I’m unmotivated & they hope that pushing my limits is tough love lesson I need.  

I later went to Facebook and shared a longer version of my Twitter message:

#WhenICallMyselfDisabled it’s because I do not know when I will be able to physically attend an event or have to leave early due to lights, noise, fatigue, having a seizure, a pain flare that no 1 can see but levels me, migraine, having an asthma attack from walking or smoke... I could go on, when was the last time I slept, when is the last time I vomited from the pain, is my hand working or is the dystonia attacking today. I could go on and on!

I call myself disabled because I can’t sing, dance and cheer the way I used to. I could go on and on... Despite being disabled, I do my best to be my best and be the best me I can be. Being disabled just means it takes me longer, I have to find another way to accomplish things in life, I still have value and worth.

I didn’t know if my Facebook message would resonate or not.  I just had a feeling how powerful this hashtag could be in helping others understand we may look normal and fully functioning, but don’t take our looks for granted. Here are a few tweets I saw after my post on Facebook.

#WhenICallMyselfDisabled I am acknowledging that my body is different but normal.

#WhenICallMyselfDisabled I feel like I finally really understand my body and mind and can accept them as they are. I have so much more confidence moving through the world, and acceptance (from myself) that the accommodations I need aren't laziness or selfishness.  

My Facebook message received more than 80 likes, comments and shares, so I know it resonated with my pain friends and “non-disabled” friends. It was an outpouring of support and helped lift stigmas that society often puts on people who need some extra help, assistance or time.  

Knowing that no matter what disability I have that I still have value and worth makes me feel so much better. I’m glad the hashtag trended. It could have been a pity hashtag, but I found it to be socially educational and meaningful. I am glad so many others joined in before and after me. A message like this can go a long way to change how we are viewed.  

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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 FoundationShe 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.

‘Trapped in a Bottle’ Billboard Misses the Mark

By Dr. Lynn Webster, PNN Columnist

The mission of The Partnership for a Drug-Free New Jersey (PDFNJ) is to reduce substance use and misuse in New Jersey. The non-profit has received more than 200 advertising and public relations awards for its public service campaigns.

Much of the organization’s work is laudable, but their new "Trapped in a Bottle" campaign spreads misleading and harmful information about opioid medication.

Digital billboards of a man or woman trapped in a prescription bottle appeared in Times Square and on mass transit. The billboards end with a warning: “In just 5 days, opioid dependency can begin.”

Physical Dependence vs. Addiction

The ad talks about dependency, but it conflates dependency with addiction.

Physical dependence is a process that starts with exposure to the first pill. Discontinuance of an opioid may lead to withdrawal — but the hyperbolic ad can easily be mistaken to be about addiction rather than dependency.

Dependency is a normal neuroadaptation that takes place when certain brain receptors are exposed to drugs, including opioids. These drugs change the structure and function of a receptor with continual exposure, and that can result in physical dependence. If the drugs are abruptly stopped, that can cause withdrawal.

Using opioid medication for as little as five days will almost never induce withdrawal. And even if withdrawal occurs after taking a short course of opioids, it does not mean the person is addicted or has an opioid-use disorder.

The "5 days" concept is meaningless because it spreads unhelpful myths about opioids. I have prescribed opioids to thousands of patients and have never seen a patient experience withdrawal when stopping within a week or even two. Managed properly, the overwhelming majority of patients experience no negative effects from dependency.

Addiction, on the other hand, requires much more than simply ingesting a pill, and it does not occur in any specific number of days. The development of this disease is a process that involves multiple factors and occurs over time.

It is important to remember that addiction is not resident in the drug, but rather in human biology. Exposure to an opioid is a necessary, but by itself is insufficient to cause the disease.

For people who develop an addiction, opioids provide a reward, and the brain seeks to repeat the pleasurable experience. For a vulnerable person, one pill can be so rewarding that it drives pleasure-seeking behavior that can lead to addiction. But that does not happen in five days or on any other timetable.

This is not the first time PDFNJ has created over-the-top digital billboards to scare people away from using prescription opioids.

A 2016 billboard intended to frighten parents asked: "Would you give your child HEROIN to remove a wisdom tooth?"

This melodramatic question was followed with: “Ask your dentist how prescription drugs can lead to heroin abuse." The innuendo is neither educational nor informative.

It's understandable that an advertising agency would have trouble accurately conveying the problems of drug dependence and addiction when the news media also has difficulty communicating the facts.

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Inaccurate Portrayal of the Opioid Crisis

In a recent WPIX article describing the “Trapped in a Bottle” campaign, Mary Murphy wrote that “drug overdoses killed more than 72,000 people in the United States in 2017, a new record driven by the deadly opioid crisis.”

Murphy used the statistic to help illustrate the harm of prescription opioids. But prescription opioids were involved in less than 20,000 of those drug deaths. If Murphy wanted to use a large number, she should have said there were 150,000 deaths from substance abuse in 2018. This would include alcohol-related deaths. Of course, alcohol delivers its poison in a bottle, too.

Murphy writes that a large percentage of drug overdoses can be attributed to heroin or fentanyl. Indeed, these are major sources of opioid deaths, but she fails to point out that neither heroin or illicit fentanyl are prescription opioids. Nor are they commonly found in a bottle. Again, her implication is that prescription opioids are at the heart of this crisis.

Concepts Video Productions, which is based in Towaco, New Jersey, produced the digital billboard. “Each year, we select a pro-bono project that will impact the world,” said Collette Liantonio, creative director of the production company.

The “Trapped in a Bottle” billboard, however, may do nothing for the world besides demonstrate how imperfectly most people understand the reason for the drug crisis and reinforce prevalent myths about it.

Perhaps Concepts Video Productions should consider creating a billboard that shows someone who is unable to find a job that pays a decent wage, and seeks to escape poverty and hopelessness with drugs. Economic and social woes, rather than prescription drugs, are at the core of our country's drug crisis.

Or perhaps Concepts Video Productions should create a giant digital billboard full of people with chronic pain who can’t get out of bed because their doctors refuse to prescribe the medication they need.

Using fear to solve the drug crisis will never be successful.

Moreover, knowing a drug's potential to lead to physical dependence or addiction will not prevent anyone from seeking a psychological experience to escape painful life experiences. The answer is to address the emotional and physical needs that create dependency or addiction in the first place.

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Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. Lynn is a former president of the American Academy of Pain Medicine, author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.”

You can find him on Twitter: @LynnRWebsterMD.

The information in this column 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.

Invisible Illness and Disability

By Mia Maysack, PNN Columnist

A final once over in the mirror. I straighten my navy-blue blazer and fastened the top button on the very first dress shirt I've ever owned, reflecting upon how grueling the process has been.

Pursuing a disability case was an absolute last option for me.  Being a contributing part of the workforce is something I not only enjoyed very much, but it made up part of my identity.

There were moments I was unsure if I'd even make it to this point, but I'm grateful to have an opportunity to exercise the right to represent myself at my disability hearing without a lawyer.

When sharing this viewpoint with others, I've mostly been advised against it but the route of legal assistance proved a dead end for me (see “Taking Control of My Disability Case”). Other recommendations included: Do not smile or dress nice, don't show much personality at all, or mention hobbies like volunteering because it could be considered contradictory to my claims.

Being differently enabled does not make me any less of a person so I refuse to act as such. It’s frustrating to feel as though you've got to convince others of your truth and, as hard as you try, they still may not “get it.”

I'm aware that my illnesses aren't visible to outsiders and because of that they are questioned. I showed up to provide an authentic glimpse as to what invisible illness can look like and how it has impacted my life.

I live in a constant state of post-infection intractable chronic migraine -- head pain that has never gone away since the year 2000. This pain is expected to be life-long and incurable.

There are also daily cluster headache attacks, which are an entirely different beast. The cherry on top comes in the form of my nerves being hyperactive, resulting in a diagnosis of fibromyalgia.

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These conditions fluctuate. One day looks different than the next, but even at my absolute best there is still pain. Things can turn for the worse at any moment without warning and constant breaks are required for even simple tasks. I am not able to function optimally in a gainful work place environment, despite my countless attempts at trying.  

Between the nausea/vomiting, light sensitivity/vision disturbances, persistent fatigue, brain fogginess and the on-going discomfort, there hasn't been a single aspect of my life that has not been negatively impacted: relationships, activities of daily living, employment, higher education,  goals, dreams, aspirations....

I prolonged beginning the disability process due to the fact that I'm aware so many have it worse than me. I am thankful for my senses, mobility, the fact I can use the restroom on my own and feed myself, although there are periods daily when I can be entirely incapacitated.

Over the years, 34 prescriptions have been written for me -- all worsening matters as a result of the side effects. About 1,800 injections have been administered.

I now take full responsibility for my own wellness and have completely revamped my lifestyle to accommodate my conditions. I’ve also found a new passion for patient advocacy as a way to find a purpose in all of the agony, leading to the reality that I am my own best expert. It's empowering to be armed with knowledge on behalf of the millions who live with headache and migraine disorders.

While conveying this information at my hearing, I experienced more emotion than anticipated, especially when a friend took the stand to provide testimony as a witness. She reminisced on how we used to go dancing together and described how we could be so carefree. But over the years what seemed to have started as a slight hindrance turned into an everyday occurrence, rippling into less and less quality time spent. This took a toll on us both.  

I can only hope it came across that migraine matters, that it burdens us all, and everyone should care about disabilities because it only takes a slight change in circumstance to alter your life forever. I didn't choose to struggle every day with getting out of bed, to have much of my time flat out stolen, or to have many memories tainted by the relentlessness of my chronic pain.  

While awaiting word back on a decision, I cannot help but wonder. How many more times will they want to see and hear from me? I've already come thus far and I'm not giving up! 

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

The information in this column 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.

What’s Normal Now?

By Pat Akerberg, Guest Columnist

Trying to define what’s normal under any set of circumstances is tricky at best.  But whenever your personal version of normal has been hurled about and ripped apart by a medical tsunami, any sense of normalcy shatters.

Whether newly diagnosed or living with a progressive disorder, once our previous sense of normal falls apart, every unusual medical issue, complication or symptom that happens now begs the question: “Is this normal?”

That began in 2009 for me when trigeminal neuralgia (TN) hit. Then after a brain surgery to supposedly fix it failed miserably, my fragile normal collapsed like a house of cards. The disabling complications and surgical damage done forced me into premature retirement.

As my circumstances rapidly devolved, people tried to comfort me by defining the extreme changes in my world as my “new normal.” That likely comforted them more than it did me.

I’ve always bristled at the term “new normal” since TN struck. Why? Because “new” implies positive connotations of something fresh, without defects or problems. And the word “normal” suggests a typical or ordinary state that you can fit into.

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Sounds nice. However, trying to characterize a rare, debilitating medical disorder or painful condition as orderly is like trying shove a distorted square peg into a round hole. Plus, a progressive neurological disorder like TN doesn’t offer some future state free from a flawed quality of life. When the nerve damage invariably progresses, complications follow. 

Medical Reality

That’s why I prefer to term my changing circumstances as my “medical reality” instead.  That descriptor fits my state of affairs better. 

When my medical reality changed dramatically, I initially started questioning whether the limitations I was experiencing might fit some other version of normal out there.

Examples of my questions follow. No doubt you have your own. I wondered if it was normal to:

  • Cancel plans and miss important occasions because my pain is so unpredictable

  • Family and friends to focus on how I look (“You don’t look sick”) versus the invisible suffering I endure

  • Watch some of them drift away when I wasn’t getting better

  • Find myself having to explain or defend my medical reality more than I’d like

  • Have occasional “brain fog” that causes me to question myself

  • Become exhausted dealing with constant pain and lack of sleep

  • Need more help with some things when I never did before

  • Have priorities, interests, motivations or some facets of my personality change

  • Question how relevant I am or indulge in pity parties on bad days

I can attest that these questions can dig deep at the identity level. From my experience, the best answers to them don’t just pop up readily either. Instead you have to live into them – so they are believable… so they are yours. Making them yours is the point.

It helps if you are able to connect with others who share your medical reality. Then you can share, compare notes and support each other.

Hard Won Answers

At times even your own medical professionals may not be able to answer what might constitute normal in your case. Though they may have familiarity with your diagnosis, how it plays out may vary widely from person to person.

Working with a qualified counselor or therapist can also go a long way towards discovering what is true for you.  It helped reinforce that I’m the one who has my best answers.

These are two of my hard-won answers that work for me when I get frustrated by limitations:

  1. It is what it is… for now.

  2. When I can, I do. When I can’t, I don’t.

After a period of wrestling with a former healthy version of normal and a medically altered one, a personal clarity emerges – normal has become medically relative. 

What’s normal for your unique medical circumstances isn’t relative to anyone who doesn’t share that same medical reality.  And vice versa.

Eventually I concluded that it wasn’t helpful to question my altered state or try to measure up to an old paradigm of normal. That shift in mindset translated to permission to pursue a host of ways for me to compensate, accommodate and re-frame my daily living to better fit my medical reality.

The strategies that took shape from that shift are geared towards improved functioning and minimizing stress.  They lead to more realistic plans or expectations and pinpoint the kinds of help you may need.

Self Preservation Skills

As you work your way through normalcy questions into ways to redefine them, my experience has been that a more formidable self takes shape – one better skilled at self-preservation. Progress to that end doesn’t necessarily follow a linear or predictable fashion. 

The good news is that you learn to shift focus toward what’s within your control – and away from what isn’t. From this more fitting “work-arounds” emerge.

These proactive countermeasures act like seeds that create fertile ground for hope to take root.  While hope may not be a strategy on its own, it often provides the intangible fuel to press on.

One thing is certain – judging yourself as coming up short compared to some phantom reality definition of normal adds no positive value to your life.  

So, rather than submitting to bogus notions that medical deficits can reduce the measure of your humanity, give yourself kudos instead as your spirit and determination prevail over them. 

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Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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.

Teaching Children How to Cope with Pain

By Dr. Lynn Webster, PNN Columnist

Summer is upon us and so is trauma season. Emergency room visits for children with traumatic injuries can double during the summer. Potential injuries range from insect and animal bites to serious bicycle and ATV injuries.

This means parents will be on the front line, triaging each event to determine which injury needs medical treatment and which requires "only" emotional support.

A mother recently asked newspaper advice columnist Amy Dickinson about the best way to handle her toddler's pain. The mother was seeking suggestions from a stranger because she disagreed with her husband’s approach. She wanted to learn the "right" way to respond to her child's injuries.

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The mother said she felt the need to provide the hurt child with ice packs and hugs, regardless of the extent of the injury, because that felt nurturing and productive.

On the other hand, the father thought his wife was making too big of a deal out of their child's pain. He believed that coddling children deprived them of the opportunity to grow into self-sufficient, resilient adults.

The columnist advised the mother that "tender gestures are an important part of parenting." Show your children that you care about their pain, Dickinson suggested, but don't turn each incident into a melodrama.

The mother's question grabbed my attention, because treating a child's pain is an omnipresent issue with far-reaching implications. By the time they reach age five, children have developed the way they will address adversity for the rest of their lives. Obviously, how a parent responds to a child’s injury -- their attitudes and behaviors -- is part of the culture that helps children form that foundation.

Options in Soothing a Child’s Pain

An overly doting, anxious parent can reinforce a hyperbolic response to pain that has little to do with the actual injury. A small "ouchie" can become a catastrophic event, and that may contribute to learned anxiety and the perception of greater pain.

On the other hand, ignoring an injury can lead to more aggressive attention-seeking behavior. Children need to know that an empathetic adult cares, even if the injury is relatively minor. Feeling safe positively influences a child's experience of adversity.

Children who have the emotional and cognitive ability to understand and determine their response to an injury generally suffer less. This is self-efficacy, and it allows the child to feel in control.

It's important to help children master their response to pain in age-appropriate ways. Of course, you comfort your pre-verbal children with a calm, measured voice and attitude. When children can communicate verbally, you can begin asking them whether their injury is a big one or small one. Then ask the children how they can make themselves feel better. This is how to nurture their resilience.

Accepting Pain

Experts who study why some people seem to handle pain better than others believe that acceptance plays a major role. There are two kinds of acceptance: acceptance with resignation and acceptance with resilience. 

Acceptance with resignation, or learned helplessness, steals hope more thoroughly than pain itself can do. A resigned person feels incapable of solving the problem and simply gives up.

Acceptance with resilience, on the other hand, makes it possible for a person to reinvent himself or herself to resolve the problem.

Children must learn how to accept pain with resilience so they can quickly, and without drama, move on from it. This requires a mutually caring relationship with the parent or guardian.

Big hurts, medium hurts, and small hurts may require different treatment, but not necessarily a different emotional response. Fundamentally, children must realize that everyday hurts are problems with solutions.

I recently watched my daughter instinctively demonstrate this behavior. My granddaughter, Gracie, fell and bumped her knee. The three-year-old began to cry. My daughter then asked Gracie: “is it a "big ouchie" or a "small ouchie?"

The question redirected Gracie’s attention. To my surprise, Gracie answered in a soft and shaky voice, “a small one.” Gracie received a hug from her mom and seemed to forget about the incident.

The Goal Is a Resilient Child

Pain is part of growing up. Parents cannot prevent injuries from occurring with their children, but they can model how to accept the injury with resilience.

To paraphrase Viktor Frankl, we have the power to choose our response to adversity. Relying on ourselves gives us control over our behaviors and happiness.

When parents can model self-efficacy without dismissing a child’s fears or insecurities; the result will be a resilient child who is able to experience pain as part of life, but not mistake it for life itself. 

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Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. Lynn is a former president of the American Academy of Pain Medicine, author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.”

You can find him on Twitter: @LynnRWebsterMD.

The information in this column 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.

Opioid Addiction Rates Redux

By Roger Chriss, PNN Columnist

The Oklahoma opioid trial is garnering attention for what could be a pivotal role in determining the liability of Johnson & Johnson and other drug makers in the opioid crisis. A key point hinges on a seemingly simple question: What percentage of people on long-term opioid therapy develop addiction?

Dr. Timothy Fong, a UCLA psychiatrist and defense expert, refuted claims by prosecution witness Dr. Andrew Kolodny that people who take opioid pain medication over extended periods have a 25% chance of becoming addicted. Fong said other studies suggest that patients who take opioids over long periods might have addiction rates closer to 1 to 3 percent.  

There is an extensive literature on these estimates, including NIH studies and published research from leading experts. I covered some of them in a PNN column last year (see “How Common Is Opioid Addiction?”)

“The best and most recent estimate of the percentage of patients who will develop an addiction after being prescribed an opioid analgesic for long-term management of their chronic pain stands at around 8 percent,” NIDA director Nora Volkow, MD, told Opioid Watch.

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Why are there so many different estimates? There is an important distinction between the incidence and prevalence of a medical condition. Briefly, incidence represents the probability of occurrence of a given medical condition in a population within a specified period of time. In contrast, prevalence gives the proportion of a particular population found to be affected by a medical condition.

The distinction is not just semantics and is critical in epidemiology. As explained in Physiopedia, “incidence conveys information about the risk of contracting the disease, whereas prevalence indicates how widespread the disease is.”

Besides obvious difficulties in determining incidence (the necessary clinical trials will never receive approval) and measuring prevalence (the required public health monitoring is well beyond our current capability), we instead have to rely on proxy measures derived from prescription drug databases, medical records and surveys.

We also have to make decisions about the “specified period of time” when determining incidence and the assessment of the “medical condition’ for prevalence.

There is no universally agreed upon time frame for the development of addiction or opioid use disorder after opioid initiation, whether medical or non-medical. Similarly, the definition of opioid use disorder has evolved over the years.

Further, in many cases incidence and prevalence are calculated based on assumptions made by researchers. For instance, in an Annual Review of Public Health article co-authored by Dr. Kolodny, a 2010 study is cited that found 26% of chronic pain patients met the criteria for opioid dependence and 35% met the criteria for opioid use disorder. This seems to be the source of the 25% claim used by Kolodny in the Oklahoma opioid trial.

But the 2010 study doesn’t distinguish between incidence and prevalence. It is also not clear how many of the surveyed pain patients had an opioid use disorder diagnosis before the onset of medical opioid therapy.

A similar critique can be levied against the authors of a 1980 letter in The New England Journal of Medicine that claimed opioid addiction was rare in pain patients. Some have claimed publication of the letter helped launch the opioid crisis. 

The problem with all of these studies is that they are retrospective in nature, limited to a particular patient population, and constrained by the diagnostic criteria in use at the time. And the estimates derived from such studies do not necessarily implicate or exonerate Johnson & Johnson.

Moreover, it is possible that addiction rates have varied over time and were influenced by factors that were not yet understood or even known. For example, recent research has found an association between opioid overdoses and drug diversion among family and friends, cold weather, altitude above sea level, and medical cannabis legalization.

The NIH work that Dr. Volkow refers to in her Opioid Watch interview works to account for all of these factors. So as Volkow stated last year, the “best and most recent estimate" stands at about eight percent. Improved public health surveillance, epidemiological research, and patient monitoring may shift this number up or down, and will increase confidence in the estimate.

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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.

Disabled Workers and Chronic Pain Patients Need a Voice in Congress

By Amanda Siebe, Guest Columnist

I’ve always wanted to serve my community. Nine years ago, I thought the best way to do that would be as an EMT and firefighter. I wanted to be there for people in their hour of need to provide help and comfort. But in 2011, that goal came to an abrupt end.

While working as a restaurant manager, I fell and badly sprained my ankle. What should have been six weeks of recovery turned into full body Reflex Sympathetic Dystrophy (RSD). Because my employer placed more value on profits than they did on my health and safety, I continued to work in the kitchen, repeatedly slipping and falling before abandoning my crutches.

That simple injury ended up taking my dignity, financial stability, and eventually it will take my life. All because my employer didn’t have another manager to run the restaurant while I recovered.

Because of my disability, I never thought much about running for political office. But as I watched the lack of representation the disabled community has and felt the impact policies and funding cuts have on my life, I began to wonder: How could I not run?

I may not have the body that I once did, but my mind and passion are still sharp, as is the case with many disabled individuals. My wheelchair has not made me any less of a person or any less deserving of a representative who looks like me and understands my plight.

So here I am, taking a stand to say that while we may be disabled, we’re still worthy of quality life and pursuit of happiness.

I’m running in the 2020 election as a Democrat in Oregon’s 1st Congressional District to fight for the care and benefits we deserve and were promised.

Federalize Workers Compensation

AMANDA SIEBE

AMANDA SIEBE

As a disabled worker, I was assured there was a safety net to catch us if we got hurt, but I quickly realized that’s not the case. We aren’t told that workers compensation is run by private insurers who have more loyalty to their shareholders than to injured workers. These companies increase profits by denying injured workers medical care, leaving them to suffer as they fight to justify every treatment, medication and benefit.

Currently, each state dictates the worker compensation laws these companies follow, resulting in injured workers getting better treatment in some states than in others. A worker in New York is no more valuable than a worker in Alabama. That’s wrong and must change.

We must end this system of profits over people. We need to federalize workers compensation and prevent lobbyists and private interest groups from ripping apart our safety net. Workers who give their time, bodies and lives to employers must receive the care and respect they deserve.

End Forced Tapering of Pain Patients

Patients with chronic and debilitating pain have been hit especially hard during the opioid crisis. Patients on stable doses of prescription opioids for years are being forcibly tapered and left to suffer. Less than 3% of chronic pain patients become addicted to opioid medication, but doctors are still taking many patients off of these drugs.

When patients are forcibly tapered without properly managing their pain, it forces some to turn to the bottle, the street or suicide for pain management. Thousands have already died as a result of losing their opioids. This must stop.

Increase Disability Payments

After my injury, I went from being the family breadwinner, earning about $50,000 a year, to trying to survive on $735 a month. Young disabled people are especially hard hit because we don’t have decades of high-earning work history to draw on, resulting in lower benefits. That’s if they can even get on SSDI. Those who become disabled before 45 often won’t get approved for disability or have to fight for years to get it.

We must stop using age as a determinate of disability. If disability doesn’t discriminate based on age, then neither should our government.

Currently, there are 554,000 homeless people in our country. Of those, 40% are disabled and 30% are elderly. The average Social Security Disability benefit is $880, while the average rent for a 1-bedroom apartment in Portland, Oregon is $1,400.

It’s no wonder when our government pays starvation wages as a benefit that so many disabled and elderly become homeless. We can reduce our nation’s homeless rate by over half just by making SSI and SSDI comparable to a living wage. We must ensure our most vulnerable citizens have a basic quality of life, too.

IMAGE BY NATALIE BEHRING

IMAGE BY NATALIE BEHRING

The disabled community needs many other things that have gone ignored by Congress. While the Americans With Disabilities Act of 1994 was a huge step forward, it hasn’t been updated in 25 years. We need the ADA to match the knowledge and technology of today.

Many people provide care to disabled family members while still holding down a full-time job. It’s time we paid these family caregivers, who save insurers and healthcare providers hundreds of billions of dollars each year. Paying them would give needy families financial stability and independence.

Medicare For All

We’re an important voice in the healthcare debate and we need to be part of the conversation. If we are to have Medicare For All, then it needs to cover all conditions, all medications and all medically necessary treatment for all patients. Medicare as it currently stands is underfunded and not good enough. We need to fight for universal healthcare coverage so patients no longer have to fight for proper care.

Even though 1 in 5 adults are disabled, we are sorely under-represented in Congress. We need representatives who understand the unique situations and problems we face. We’ve been forced to sit on the sidelines as others decide our care, benefits and future. It’s time we had a say.

For too long, we’ve been victims of circumstance — told that we can’t run for office because our bodies prevent us from giving everything we have. That’s a lie.

Running for Congress isn’t what I thought I’d do be doing with the time I have left, but everyone deserves representation. We’re a part of this country and it’s time we were treated as such. It’s time for the disabled community to unite and be represented. We deserve better. 

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Amanda was diagnosed in 2012 with Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). Since her diagnosis, she has advocated for chronic pain and disability rights. In 2016, Amanda was the recipient of the WEGO Health Advocate Rookie of the Year Award.

Amanda has dedicated her life to improving her community and has fought to teach her 11-year-old son, Keagan, the same. Further information about Amanda’s congressional campaign can be found on her website.

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

We Are More Than Our Pain

By Carol Levy, PNN Columnist

I was referred to a neurologist who specializes in headaches. Trigeminal neuralgia is very different from a headache, but any port in a storm. I called to make an appointment and was told all new patients must agree to meet with a psychologist. If you refuse, you do not get the appointment.

This seemed like an inherent bias: Patients with head pain must have psychological issues. Does this mean the doctors are prejudging the truthfulness of their pain complaints?

Despite misgivings about seeing a psychologist, I made the appointment.

A few weeks later, the neurologist admitted me into the headache unit of the local hospital. Everyone in the unit had to have a one-on-one meeting with the psychologist.

“Tell me about your life,” she said.

I told her the most salient fact: “I am essentially alone in the world. My family abandoned me decades ago. And when you don’t work it is hard to make friends.”

Her suggestion: “You should go to counseling. They can teach you how to make friends.”

Well, there's a good idea. Except...

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Before the pain started, I had no trouble making friends. Since the pain is a different story. Trying to make friends is hard when you don’t have the glue necessary to start a new relationship. I never married and I never had children because the pain took that part of my life away from me.

At my age, a senior citizen, that is often the opening question when you meet new people: “Are you married?” or “How many grandkids do you have?” No and none.

“Do you work? Are you still working?” Again, no. I haven't worked in over 40 years because of the pain.

If I am honest and say, “No to all of those. I have been disabled by a pain disorder since 1976,” the response tends to be a mouth falling open, followed by “Oh, I'm sorry.” Or a somewhat glazed look and a turn away to speak with someone else.

How do you overcome this? I haven't a clue.

But it started me thinking. When, if ever, did any of my doctors ask, “How are you dealing with this?”

I see this often mentioned in support groups: “My doctor never seems to have the time or the interest to find out about me, about how this is affecting my life.”

I am not sure if they don't ask because they don’t care or because it is something they can’t treat with a pill. Maybe they are afraid of hearing the truth for too many of us: “I'm not dealing well with it.”

Isn't part of being a healer taking the whole person into account? Doctors have precious little time to spend with us. Maybe they should take a few extra minutes to learn about the essence of who we are and what the pain has done to our basic core.

There is no medicine or surgery for the effect the pain has on our lives. But being able to say, especially to our doctors, what it has taken from us could help others see us as something more than our pain.  

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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.

Always Check Your Medical Bills and Insurance Statements

By Barby Ingle, PNN Columnist

Recently I received a medical bill and noticed my insurance did not cover any of the costs of my treatment for an emergency care visit. This particular visit happened when I woke up in pain and feeling like I couldn’t take a full breath. I thought it might be a partial lung collapse, something that I have experienced before.

About a month after the emergency care visit, I receive a bill from the provider. The first thing that I checked on the bill was my vital information: name, address, phone and insurance card ID. They had the wrong first and last name and my social security number instead of my plan number.

No wonder the insurance company denied it! It looked like someone else was trying to be me and got the details wrong.

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I have done many interviews and articles over the years about medical billing. If I didn’t know how to catch these mistakes, I would have gotten stuck paying the entire bill.

Studies show that 8 in 10 medical bills have at least one minor mistake. These mistakes add up and cost society more than $68 billion in unnecessary healthcare spending, according to Medliminal Healthcare Solutions, a company that helps patients find and fix medical billing errors.

When I checked into the emergency care center that day, I was not able to speak very well and my husband handled the check-in process. He presented my drivers license and insurance card.

When the nurse called me back, she said my name incorrectly, close but incorrect. I corrected her and told her to make sure it is correct in the system because if data such as my name is not correct, the insurance won’t pay. She confirmed my name and the spelling and updated her system. The billing still got it wrong.

When I went back to the emergency care center with the medical bill, the front desk lady said the information was in their system correctly, but billing is done by another group and sometimes data gets mixed up. She gave me the info to contact the billing company.

After returning home, I called the billing company. Their representative said they had my name correct but corrected my insurance information. They are going to re-bill my insurance. My co-pay portion should only be 20% of the bill.

It literally came down to multiple people making little mistakes that led to me receiving a bill that was incorrect. If I didn’t check and see the errors, I would have gotten stuck paying the full amount.

Over the years this has happened quite a number of times to me and I am sure it happens to others. If you don’t compare your explanation of benefits (EOB’s) and provider bills against each other, you could pay more than you should for medical services. This can also happen if you don’t check your medical records. If a medical record is incorrect, you may not care at the time, especially if you received the appropriate care.

But what if you’re in an emergency situation where you can’t check and verify what is in the system? You may end up being given medications that you no longer take due to out-of-date prescription and medical records. You may even be denied coverage because of misinformation in your records.

What billing data should you check? Start with your name, date of birth, date of service, services provided and insurance information. For your medical records, check your name and date of service. Make sure to view your lab results, radiology reports, surgical reports, follow-up care suggestions, and daily notes from nurses and providers.

Also check your insurance EOB’s to see if the co-pays and deductibles you’ve paid matches up with their data, and you get the maximum coverage under your plan. Always check and correct medical information and bills. If you are doing it by phone, record the call if you are in a state where that is allowed. If not, then take good notes. Be sure to keep a copy of every provider bill, EOB, email and letter for your records.

Over a lifetime of chronic illness, you’ll save yourself thousands of dollars and get access to better care.

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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 FoundationShe 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 Push for Stem Cell Censorship Has Begun

By A. Rahman Ford, PNN Columnist

A new study published in journal Stem Cell Reports, entitled “How to Peddle Hope: An Analysis of YouTube Patient Testimonials of Unproven Stem Cell Treatments,” looks at over a hundred videos by stem cell patients posted on YouTube. 

The study appears to have an underlying anti-democratic agenda – to shame YouTube and other internet platforms into removing positive patient testimonials about stem cell therapy (SCT).  Indeed, the use of the pejorative term “peddle” in the article’s title immediately undermines the study’s credibility.

This research epitomizes how propaganda can masquerade as scientific research, and how data can be twisted to meet its masters’ agenda.

The study comes on the heels of a recent federal judge’s decision that the FDA could regulate stem cells made from adipose tissue – a patient’s own fat cells. Although SCT critics generally praised the ruling as a victory for government oversight, outlets like the Washington Post lamented that it would likely not deter clinics from offering the therapy. 

A New York Times article accused the FDA of not acting until patients were harmed, and using enforcement actions that consist only of warning letters without any real teeth.  

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STAT News even criticized the National Institutes of Health for allowing stem cell clinics to “co-opt” the nation’s clinical trial database.

Stem cell critics have apparently realized that the three previous stages of their vilification campaign have failed. These stages were:

  1. Vilify the patients:  Promote the condescending narrative that patients are desperate, ignorant and too stupid to research stem cell therapy for themselves and decide whether it is best for them.

  2. Vilify the clinics: Stem cell clinics are run by shady charlatans who engage in duplicitous business practices that take advantage of desperate, ignorant and pitiful Americans by selling them “unproven” products that couldn’t possibly help them.

  3. Vilify the federal government: Federal agencies have not acted quickly or robustly enough to enforce the regulations that govern regenerative medicine, thus tacitly approving the growing “wild west” of clinics offering SCT.

The Push for YouTube Censorship

Critics now appear to be setting their sights on a fourth vilification stage.  In their desperation, they have decided to take a more authoritarian turn towards internet censorship.

The new study’s authors examined 159 YouTube testimonials from patients who had SCT for ALS, multiple sclerosis, Parkinson’s, cerebral palsy and spinal cord injury.  Not surprisingly, they found that most of the videos were published by providers and nearly all discussed the benefits of SCT in improving pain, overall health and quality of life. 

The authors concluded the YouTube testimonials “may be a potent marketing tool” and “are likely to have a wider reach and significant impact on influencing health behavior.” 

The article’s final sentence reveals the authors’ true motive: “Adopting multiple approaches, including patient education, enhancing patient treatment options, and regulatory oversight, are required to make a significant dent in reducing the number of clinics providing unproven SCTs.”

Setting aside the numerous, glaring and egregious methodological shortcomings of the study, the more important issue is one of broader public policy.  These authors appear to be implicitly advocating that YouTube and other internet sites censor videos that are “misleading” or “deceptive” or not published by “reputable organizations.” 

And who or what is to determine whether any particular video meets this criteria?  Wired published an article with the ominous headline “YouTube Testimonials Lure Patients to Shady Stem Cell Clinics,” implicitly calling on YouTube to take action. The notion isn’t farfetched. YouTube has been in the news a lot recently for censoring videos, using nebulous criteria and subjective standards.   

Apparently, SCT critics have jumped on the YouTube censorship bandwagon.  It’s a wagon that seems to claim a new victim every day, and its victims are usually those who threaten the status quo.  Unfortunately, it’s a wagon that travels the pothole-riddled road of authoritarianism.  It’s a road patrolled by people in strange uniforms, with sophisticated and articulate weapons, who dispense a vicious propaganda, and who always claim to have your best interest at heart.

Please make sure to call, email and/or tweet your state and federal legislators to voice your support for the availability and affordability of stem cell therapy.  The people who suffer with pain and disability will not be silenced and will not be censored.  Our democratic voice will be the response to their authoritarianism.

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

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

The information in this column 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.