The Myth of the Opioid Addicted Chronic Pain Patient

By Roger Chriss, Columnist

Prescription opioid use for chronic pain does not usually lead to addiction or to the use of illicit opioids such as heroin. But media reports often say otherwise.

“Opioids can be so addictive that many people develop a desperate need for them even after the pain has subsided, or disappeared. So when they’re turned away by doctors and pharmacies, they look for a fix on the streets,” Fox News recently reported.

Public officials also confuse the issue.

“Most of our constituents with substance-use disorders began their path to addiction after forming dependencies to opioids prescribed as a result of an injury or other medical issue,’ Anne Arundel County Executive Steve Schuh wrote in a letter to Maryland doctors. ‘Their opioid dependence may have led to obtaining illegal street opioids like heroin, sometimes laced with fentanyl, after valid prescriptions ran out.’”

But this is not what usually happens.

“What the media has sometimes missed is that of those people who started with prescription opioids and then went on to use heroin, 75% never had a legal prescription for opioids. They were already stealing or buying the drugs illegally,” Judith Paice, PhD, RN, director of the Cancer Pain Program at Northwestern University told Medscape.

In other words, the reality of opioid therapy for chronic painful conditions is quite different from what media coverage and public officials claim.

In fact, the majority of chronic pain patients never even receive opioid medications. Recent estimates state that between 8 and 11 million chronic pain patients receive an opioid prescription at some point in a given year, with only some of them taking opioids for pain control on a daily basis.

Although that is a large number, it is dwarfed by the National Institutes of Health’s estimate that 25.3 million Americans live with daily chronic pain and nearly 40 million have severe pain. That  includes people in hospice and other end-of-life care, as well as people enduring cancer pain.

Moreover, many of the chronic pain patients who receive daily opioid therapy get there only after having failed many other treatment options, including non-opioid drugs and physical therapy. Opioids are rarely the first choice for treating persistent pain conditions, especially in the wake of opioid prescribing guidelines from the CDC, Department of Veterans Affairs, and some states.

Chronic pain patients are carefully screened, scrutinized, and monitored. They are subjected to risk assessment using the Opioid Risk Tool, required to take urine and saliva drug tests, told to show their prescription bottles and have their pills counted, and given pain contracts to sign. Their prescriptions are verified at pharmacies and tracked through prescription drug monitoring programs. Opioid misuse in any form is readily detected and is far from common.

Therefore, it is a myth that opioid addiction or other forms of opioid use disorder starts with a prescription. Instead, it almost always begins at a young age with the misuse of other drugs, such as tobacco, alcohol and marijuana. About 90% of drug addiction starts during adolescence.

And although most people who are addicted to heroin have previously used prescription opioids, the opposite is not true. Most people on opioid therapy do not become addicted to prescription opioids, and most of the people who do become addicted do not transition to heroin.

But the myth confuses and conflates chronic pain and opioid addiction. And this is having real-world consequences, both for people on opioid therapy for chronic pain and for people with opioid use disorder.

For people on opioid therapy, the problems include forced medication tapers or even termination of therapy. Pain management is an essential part of a variety of diseases and disorders, from the neuropathy of arachnoiditis and multiple sclerosis, to the visceral pain of interstitial cystitis and porphyria, to the musculoskeletal pain of Ehlers-Danlos syndrome. The choice and dose of medication should be a clinical decision made between patient and physician, not a blanket determination made by a guideline, regulation or committee.

Further, chronic pain is fast becoming undertreated or even untreated, which can have major health consequences. Forcing people to live without good pain management only creates more medical problems. 

For people suffering from opioid use disorder, the addiction myth embodies the idea that it is just accidental chemistry. But as Maia Szalavitz explains in her book Unbroken Brain, addiction has three key components: “The behavior has a psychological purpose; the specific learning pathways involved make it become nearly automatic and compulsive; and it doesn’t stop when it is no longer adaptive.”

The perpetuation of this myth has resulted in people not getting effective care, because the focus is on the substance instead of the sufferer.

“If we don’t invest in people and we focus on drugs, we end up creating another polarizing conversation about substances and people will continue to fall through the cracks,” Dr. Joseph Lee of the Hazelden-Betty Ford Foundation told the Minnesota Post.

The myth of the opioid-addicted chronic pain patient needs to be banished before it causes more people to fall through the cracks.

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.

6 Reasons Opioids Get More Attention Than Alcohol

By Janice Reynolds, Guest Columnist

Every day we hear how the “opioid crisis” is spiraling out of control.  Some even claim it is the worst health crisis to ever hit our country.  The response has largely been to restrict access to opioid pain medications and to sue the pharmaceutical companies that produce them.

But what is the real crisis? The elephant in the room that everyone conveniently ignores?

I believe opioids are being used to cover-up and distract from the real addiction crisis, which is alcohol abuse. 

Alcoholic beverages have been with us for thousands of years and are an important part of everyday life. Alcohol consumption has been increasing in the U.S. since the late 1990's and today about 57 percent of Americans drink alcohol at least once monthly, far more than consume opioids. Drinking to excess is usually frowned upon, but has long been treated as socially acceptable, even by the Puritans:

Drink is in itself a good creature of God, and to be received with thankfulness, but the abuse of drink is from Satan, the wine is from God, but the Drunkard is from the Devil.                                                                                                                                                        --  Increase Mather, Puritan clergyman in “Wo to Drunkards” (1673)

Alcohol is the fourth leading cause of preventable death in the in the United States. In 2015, over 30,000 Americans died directly from alcohol induced cases, such as alcohol poisoning and cirrhosis of the liver. 

There are another 88,000 deaths annually from alcohol related causes, including motor vehicle accidents, homicide, suicide, and incidents of poor judgement – such as going out in subzero weather and freezing to death, and infants dying after being left in hot cars by drunk fathers.

Many harms also occur that usually do not result in death, such as alcohol-related sexual assault or date rape, fetal alcohol syndrome, and fetal alcohol spectrum disorders. The World Health Organization reports that alcohol contributes to more than 200 diseases and injury-related health conditions, including alcohol dependence, cirrhosis, cancers, and injuries.

So why is alcohol ignored and the so-called opioid epidemic is hyped? Here are six reasons:

1) Many people drink alcohol. They may only drink “socially” and need a glass of wine or beer to relax, enjoy a sporting event or socialize at a party. Alcoholic beverages are an integral part of mealtime for many people.   

We also have functional alcoholics who are secret addicts.  As a nurse for over 20 years, it was not uncommon for me to have a patient begin to go through withdrawal after 48 hours in the hospital. Usually they deny drinking alcohol or admit to one drink a night. There is also denial by the medical profession about the dangers posed by alcohol, such as addiction specialists who differentiate between heavy drinkers and alcoholics.

Research frequently ignores alcohol entirely. A recent study looked at health conditions linked to Alzheimer’s disease and mentioned obesity, high blood pressure, diabetes and depression. Alcohol was not even considered, even though it has been shown in valid studies to damage brain cells.

2) Alcohol is BIG business.  Profits are immense and generate tax revenue.  Profits for breweries, distilleries and related businesses far outstrip what pharmaceutical companies make from opioids.  We see these monies going not only to shareholders, but government, lobbyists and advertising.

No one complains about a full-page newspaper ad for a brand of vodka, but a commercial during the Super Bowl for medication to treat opioid induced constipation sparks outrage. And no one bats an eye when a story about Maine liquor stores dropping the price of hard liquor is on the same front page with another article on the opioid crisis.

When have you ever seen a stadium named after an opioid or even a pharmaceutical company? Yet we have Coors Field in Denver, Busch Stadium in Saint Louis, and Miller Park in Milwaukee.

3) Problems need scapegoats. In this case we have two scapegoats: people in pain and opioids.  

Prejudices against people in pain have long existed: “It’s all in your head” or “the pain can’t be that bad” are all too familiar. It could also be simple bigotry towards someone different or a lack of compassion. We used to call pain management “an art and a science,” now it is optional and politically driven medicine.

Opiophobia has a long history as well; fear of addiction, fear of respiratory depression, belief that opioids don’t work, and that people in pain are drug seekers. The “opioid epidemic” has opened the gateway for uncontrollable and irrational bigots.

Nearly all the interventions to curb drug overdoses have been directed at people in pain, who are not responsible for the illegal use of opioids. If all prescription opioids disappeared tomorrow, it would have nil effect on the opioid crisis. Addicts would just turn to heroin and illegal fentanyl (if they haven’t already). There are a boatload of ways to get high.

4) McCarthyism: In the 1950’s, Senator Joseph McCarthy went hunting for communists and many lives were ruined. Today, the term “McCarthyism” defines a campaign or practice that uses unfair and reckless allegations, as well as guilt by association. 

Politicians, the media and many doctors are afraid to say anything not endorsing the “opioid epidemic” or supporting people in pain, because it will be held against them.

5) Fear-mongering:  The spread of frightening and exaggerated rumors of an impending danger that purposely and needlessly arouses public fear.

We can see this in the psychological manipulation that uses scare tactics, exaggeration and repetition to influence public attitudes about opioids. This is exactly what Andrew Kolodny and Physicians for Responsible Opioid Prescribing (PROP) are doing, along with formally reputable organizations such as the Food and Drug Administration and professional medical associations.

6) The alphabet soup: The CDC, DEA, and the bureau of Alcohol, Tobacco and Firearms (ATF) have all played a part in distracting us from alcohol abuse.  Although it is a drug, alcohol is not usually covered by the DEA, but is handled by the ATF, which mainly concerns itself with alcohol licensing and collecting alcohol taxes.

The DEA has been totally helpless to stop the influx of illegal opioids like heroin and illicit fentanyl, as well as thediversion of prescription medications. Their survival mechanism is to go after the legitimate use of opioids for pain.  They have become a terrorist organization that is driving providers out of pain management.

In order to cover-up the heavy cost of alcohol abuse, we have seen hysteria driven by politicians and the media. This has resulted in difficulty getting opioids prescribed for pain, skewered facts to support the “opioid epidemic,” the CDC’s opioid guidelines, and what I call the passive genocide of people in pain.

There are many different means by which genocide can be achieved and not all have to be active (murder or deportation). For our usage, genocide means “the promotion and execution of policies by a state or its agents which result in the deaths (real and figuratively) of a substantial portion of a group.” 

Our genocide is passive because it relies on the harmful effects of pain, suicide, withdrawal of treatment, excessive use of over-the-counter pain relievers, malpractice, and the total dismissal of the human rights of people with pain; as well as lies and falsehoods being held as truths to promote this genocide.

This is not to say that alcohol should be made illegal. Prohibition did not work because most people wanted alcohol and it lead to a huge criminal enterprise. It is to say prescription opioids should not be treated differently than other medications or alcohol.  And people in pain should not be used to further an agenda based on fallacious, unethical and immoral sensationalism. 

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking 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.

The Case for Opioid Therapy

By Jordan LaMark, Guest Columnist

I take opioid pain medication and I am not ashamed of it. I refuse to feel guilty for needing medication.

I am not an addict. I do not deserve to be treated like a criminal – and for that matter, neither do addicts. I should not have to jump through hoops, be subjected to intense scrutiny, and constantly be forced to prove how much pain I’m in to receive my medication. It shouldn’t be a battle to receive treatment.

I live with Ehlers Danlos syndrome, a chronic incurable condition that causes daily unceasing pain. The pain wears at me, saps my energy, and severely restricts my functionality.

I also battle many other symptoms -- chronic fatigue, nausea, dysfunction of my autonomic nervous system, and failure of my digestive tract that requires me to be fed by a surgically implanted feeding tube (which is also very painful, and has altered my core muscles and posture). I sometimes need a wheelchair to get around and often cannot leave the house for days.

I spend most of my time dealing with my medical conditions. My pain medication gives me some relief and improves my functionality without negative side effects. I also use many other techniques to deal with my pain, including several forms of therapy, and I’ve had two surgeries to treat severe endometriosis.

Despite all of this, I am a happy person and do as much as I physically can, spending time with my family, going to church and daytime events, even the beach. Now, however, I am afraid that there may come a point when I may be unable to obtain the medication that improves my quality of life.

JORDAN LAMARK

There is no doubt an opioid abuse problem in our nation. However, the answer is not to enact reactionary laws and restrictions that make it harder for patients with a legitimate need to receive their medication. The conversation about opioids has been focused on acute patients and those who have had surgery or an injury, but has neglected to mention the unintended victims of anti-opioid campaigns: chronic pain patients who will most likely need medication for the rest of their lives.

Neglected also is that most of the abuse of prescription opioids takes place outside of the doctor-patient relationship. The World Health Organization tells us the risk of dependence and diversion is low when opioids are prescribed for pain. Studies also show that physician prescribed opioids are not the primary source of diversion and that theft from the drug distribution chain is an important source of illicit pain medication.

The CDC, along with other organizations and federal and state governments, has overstepped its authority by releasing a set of guidelines for opioid prescribing. Although the guidelines do not prohibit the prescription of opioids, they have increased the complexity and effort involved in getting them. This has had the same effect as declaring them illegal. Most doctors that I’ve talked to flatly state that they don’t prescribe opioids anymore.

I recently saw a pain doctor at one of the best hospitals in the country and was told that their policy is to not prescribe opioids to non-cancer patients. When asked what I should do, since in my case other methods either have not worked or cannot be used due to side effects, the doctor said he did not have a suggestion and wished he could prescribe them for me, but was unable to.

Many patients are having their dosages reduced in response to the CDC guidelines, and some are left with the heart-wrenching prospect of having their medication completely cut off. Many are now being forced to undergo monthly drug tests in order to receive treatment, even when there is no reason to suspect abuse. Our criminal justice system treats suspects as “innocent until proven guilty,” but the same logic does not seem to apply in this case.

I have personally had a pharmacist at a major chain refuse to fill my prescription and lie about the reason why, and then make negative comments about it to my face. I have had several doctors express concerns about legal action and increased government interference in opioid prescription, and cite these as reasons for not prescribing.

One pain specialist gave me several reasons that doctors are now hesitant to prescribe opioids. Number one, of course, was public and government pressure, followed by the increased complexity of prescribing and the fear of losing his license.

Another reason cited was the lack of an “equation” to tell doctors what and how much to prescribe. I think that is a faulty argument. Psychiatric drugs, for example, do not have such an equation or rubric --that is left up to the doctor’s discretion, as it should be.

I have been denied coverage for a treatment because my condition was not on my insurance company’s list of those approved to receive the treatment. Someone who had never met me decided he or she knew better than my doctor (and I) what potentially life-saving treatment I could receive.

Doctors often suggest “alternative treatments” such as cognitive behavioral therapy, which is usually not covered by insurance; acupuncture, which is almost never covered; and physical therapy, which becomes very expensive even with insurance if you are going several times a week for months. Medical marijuana is not covered and is prohibitively expensive. These alternative therapies, while worth trying, do not help everyone.  ­

If the medical industry and government are really serious about promoting alternative, non-opioid therapies, then they should be made affordable. Continuing to say “opioids are bad” and promoting restrictive laws does not stop illicit drug use and only hurts those who need them. These decisions should not be made by insurance companies or the government, they should be up to the individual physician and patient.

I have a feeding tube that was surgically placed and has forever altered my body. I have an open wound that causes pain and infections. The surgery carried risk, the act of changing the tube every few months carries a risk, and the tube’s mere presence is a risk. And yet, it’s all worth the risk because it keeps me alive. My pain medication takes the life that the tube has saved and makes it a life worth saving.

The medical industry does not have to bow to public or political pressure. This is the time for doctors and patients to stand up and reject reactionary responses. Do not take away the only relief many of us have.

Jordan LaMark lives with Ehlers-Danlos Syndrome and comorbid conditions, including Mast Cell Activation Syndrome (MCAS) and gastroparesis, for which she has a permanent feeding tube.

Jordan is the founder of Digesting that Facts, a website about living with her various medical conditions that includes educational information and research articles.

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.

Lessons from Dreamland About the Opioid Crisis

By Roger Chriss, Columnist

The book Dreamland: The True Tale of America's Opiate Epidemic by Sam Quinones has become a playbook for many lawmakers, regulators and journalists covering the opioid crisis. It is an award-winning book from 2015 that describes the rise of Mexican “black tar” heroin, pill mills and opioid addiction starting in the 1980’s.

It is not a book about persistent pain disorders or the people who endure them using opioid medications.

Quinones interviews heroin couriers and addicts, as well as prescription opioid addicts. He describes heroin smuggling, heroin distribution networks, prescription opioid diversion, carefully crafted medical opioid scams, and misleading marketing by opioid manufacturers. But chronic pain patients do not appear in Dreamland at all.

Early in the book, Quinones brings up a 1980 research letter in The New England Journal of Medicine and the work of Russell Portnoy, both of which are alleged to have contributed to opioid overprescribing. But the overprescribing does not involve people with chronic pain disorders. Instead, Quinones explains that “in the Rust Belt, another kind of pain had emerged. Waves of people sought disability as a way to survive as jobs departed.”

And overprescribing did not necessarily mean over-consumption. As Quinones states, “Seniors realized they could subsidize their retirement by selling their prescription Oxys to younger folks. Some of the first Oxy dealers, in fact, were seniors who saw the value of the pills in their cabinets.”

Such opportunities were not ignored. More conventional drug dealers moved in and unscrupulous physicians opened drug-dealing clinics that we now call pill mills.

Quinones explains how to recognize a pill mill: “I asked a detective, seasoned by investigations into many of these clinics, to describe the difference between a pill mill and a legitimate pain clinic. Look at the parking lot, he said. If you see lines of people standing around outside, smoking, people getting pizza delivered, fistfights, and traffic jams—if you see people in pajamas who don’t care what they look like in public, that’s a pill mill.”

The importance of pill mills to the opioid crisis cannot be understated.

“It helps that OxyContin came in 40 and 80 mg pills, and generic oxycodone came in 10, 15, 20, and 30 mg doses—different denominations for ease of use as currency. The pill mills acted as the central banks, controlling the ‘money supply,’ which they kept constant and plentiful, and thus resisted inflationary or deflationary spikes,” wrote Quinones.

Dreamland goes on to explain that in rural Appalachian communities an underground economy arose with prescription opioids as currency, supported by scamming Medicaid and Social Security disability. Some addicts funded their habit by shoplifting at stores like Walmart and paying dealers for opioid pills with their stolen goods. Other addicts worked with dealers to scam Medicaid to pay for opioids from pill mills or to get opioids from legitimate clinics using forged medical records.

Opioid addiction was also driven by high school and college sports. Quinones explains that “after the games, some of the trainers pulled out a large jar and handed out oxycodone and hydrocodone pills - as many as a dozen to each player. Later in the week, a doctor would write players prescriptions for opiate painkillers, and send student aides to the pharmacy to fill them.”

Thus, the opioid crisis is a tragic result of a confluence of forces, including heroin sold under a business model virtually impervious to traditional law enforcement techniques and legal opioid pills used illicitly. As Quinones explains at the end of the book, “One way to view what happened was as some enormous social experiment to see how many Americans had the propensity for addiction.”

None of this involves medical opioids being used for pain management in people with chronic, progressive, or degenerative disorders. Quinones frequently mentions “chronic pain” but never defines the term precisely. However, his examples consistently refer to ongoing pain from a workplace accident, sports injury or accidental trauma -- not the persistent pain of a medical disorder. He does not interview pain management specialists or chronic pain patients because that is not the point of the book.

However, he does acknowledge the opioid crisis is having an unintended effect on people with persistent pain disorders. Quoting Quinones, “Patients who truly needed low-dose opiate treatment for their pain were having difficulty finding anyone to prescribe it.”

That is the lesson that Dreamland offers but too few people are learning. The opioid crisis is a dire manifestation of a larger problem of substance abuse. It is not about people with chronic pain disorders becoming addicted to opioids and then turning to heroin, an outcome that is exceedingly rare.

If we don’t understand what this book offers, we risk making the same mistakes that many lawmakers, regulators and journalists keep making. We’ll misunderstand the true nature of the opioid crisis and mismanage the response. And that will harm both opioid addicts and chronic pain patients, two groups that have already suffered enough.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

The Importance of Understanding Research

By Janice Reynolds, Guest Columnist

Almost daily we are told that a study shows this or research shows that, a physician makes claims based on research, or the news media blaring “New Study Shows.” 

Even worse, more and more frequently we are seeing providers, government and the media basing their opinions or actions on poor evidence -- or many times the total lack of it.  I have a tee shirt which says: “Show me the evidence and critical thinking.”

It is time for people in pain as well as their advocates to understand research studies and hold accountable those that are cited.

Evaluating research is a little complicated and time consuming, but it is something every medical person needs to do.  More importantly, the media needs to justify their reliance on research and identify that what they are saying is true, rather than something totally lacking in validation and objectivity (which unfortunately is most often the case). 

After all, the media claim to do careful research before doing a story. Politicians should also have accountability for objective truth.

As people living in pain, our arguments and comments are more effective if we show that we know what we're talking about.  It may not change someone's mind if they are opiophobic or dislike and distrust people in pain, but it’s important to try.

I’ve made repeated requests to the Portland Press Herald to give me the citations for their claim that “studies have shown conclusively that opioids not only don’t work for chronic pain but make it worse.” I haven’t changed their minds, but it is ammunition in the battle for actual truth.

These are some of the terms the public and people in pain need to understand:

Correlation and causation: Probably the most important.  Just because something happens at the same time, does not mean one thing “causes” the other.    My husband teaches statistics at a university and the example he uses is when the number of new boat licenses increases the number of manatees being killed. This does not mean boat licenses kill manatees.  This correlation means causation thing is rampant in media stories about pain.

Anecdotes and surveys:  An anecdote is an account not necessarily true or reliable, because it is based on personal experience rather than facts or research.  For every anecdote, there are often many more which tell a totally different story. An example would be: "My son died of an opioid overdose. We have to stop these drugs from killing people." Any death is tragic, but opioids do not in themselves kill people. 

Surveys also rely on someone’s self-reporting.  The one used extensively by the media and politicians is that 3 in every 4 heroin addicts got their start taking prescription opioids. That particular survey relied on addicts to tell the truth, did not not include addicts outside of treatment, and most importunately did not include millions who have taken opioids for pain and never even touched heroin.  Surveys and anecdotes are worthless as evidence.   

Case studies:  These are things that happened to a person, group or situation at a single time and/or place; i.e. a case history.  The CDC makes use of case studies to “prove” in their seminars the correctness of their opioid guidelines.  Case studies are of interest, but are not valid evidence for the same reasons anecdotes are not.

Data mining: This is the process of collecting, searching through, and analyzing a database to discover patterns or relationships. In our case, it usually means they have gone through death certificates, insurance records and the like.  Once again, this is not a source of evidence as there is no way to verify the validity of the data, as well as other confounding factors.  Data mining is the CDC’s favorite method and it has been shown to be highly inaccurate. It does not have a place in medicine, except to develop insights and lead to actual research.

Statistics: These by themselves do not mean much. Researchers need to use the appropriate statistical analyses before publishing them.  Medical providers, media and politicians need to acknowledge what analysis method was used and what the outcomes were.

Qualitative vs quantitative: Qualitative research gathers information that is not in numerical form. For example, diary accounts, questionnaires, case studies and anecdotal accounts are used to gain an understanding of underlying reasons, opinions and motivations. Qualitative data is typically descriptive data and as such is harder to analyze than quantitative data. It can never be “proof.”

Quantitative research looks at numbers, it is the “hard” science. Quantitative research is used to quantify the problem by way of generating numerical data that can be transformed into useable statistics that can be evaluated.

Objectivity: Objectivity means being aware and honest about how one's beliefs, values and biases affect the research process. This also applies to the reviewing, reporting, and selection of research.  The media especially lacks objectivity in their reporting of all issues related to people in pain and the “opioid addiction epidemic”.

Method:  How the study was done; meta-analysis, random controlled trials, non-random controlled trials, survey, cohort or case controlled study, or even expert opinion. The latter is only acceptable when no other research exists on the subject.

Sampling: The number of participants and who they were. A small number has a lower strength of evidence.  My favorite example of a “who” was a study done which claimed to show analgesics caused people to be homicidal.  Their sampling took place in a prison where all the participants were murderers!  Doesn’t take a rocket scientist to figure out this was biased.

Strength of evidence: This is probably the most important term when it comes to research.  There are many different tables used (easy to Google) that show a hierarchy of what is strong evidence, what is weak and what is non-existent.  Even the CDC recognized the evidence for their opioid guidelines was weak to non-existent. Most studies on the opioid epidemic or people in pain are inherently weak because the evidence is so poor.  

Proof:  Research seldom ever provides “proof.”  If multiple studies come up with the same results, then some might call it proof; however it is safer to say “likely.”  When talking about pain, medications, interventions or even addiction, the word “proof” should be off the docket.

Critical thinking: Critical thinking is the identification and evaluation of evidence to guide decision making. Another definition is making reasoned judgments that are logical and well thought out, a way of thinking in which you don't simply accept all arguments and conclusions you are exposed to, but rather question such arguments and conclusions. 

Those who are prejudiced and biased against people in pain or opiophobic rarely use any critical thinking skills at all.  In fact, after a comment I had made on a newspaper article, someone assassinated my character by saying my head was filled with mashed potatoes and I lacked any critical thinking skills whatsoever.  There was more and it was pretty funny.  This unfortunately is characteristic of the media, politicians and general public. No matter what we say or how truthful our comments, they will not hear. 

Evidence based: This means looking at best available clinical evidence from methodical research.  The word term is thrown around lightly and unless you have the actual “evidence” to back it up, it is meaningless. 

Several years ago, I was part of the original Pain PEP (Putting Evidence into Practice) team for the Oncology Nursing Society. We studied pharmaceutical interventions for nociceptor and neuropathic pain in the adult cancer patients. It took us two years to evaluate recent guidelines and research studies, and to write our guidelines based on the strength of the evidence. If you say something is “evidence based,” be prepared to show it.

One last comment on the issue of research and pain management: There are integral difficulties in pain research as people vary in their reaction to pain, the cause of their pain, and how they respond to treatment. Any research that uses the term “chronic pain” is already working with a false premise because there are so many different types of pain that are persistent.  Any research that looks at a “class” of medication such as opioids or antidepressants is also employing a false basis as well.

Pain management is an art and a science, and any attempts to standardize it will only harm people in pain.  

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking 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.

Free Programs That Help Pay for Prescription Drugs

By Barby Ingle, Columnist

I decided to write about the high cost of prescription drugs because I am personally experiencing it and also hearing from other patients who cannot afford their medications. I found a program that can help and wanted to make sure that this information gets out to others who need proper, cost-contained, and timely access to care.

Last year I had my first experience with abandoning a prescription at the pharmacy. I developed asthma symptoms and was given a first-time script for a bronchodilator inhaler medication. My primary care provider gave me 2 free samples in his office and warned me that getting the inhaler could be expensive.

When I went to pick it up the first time, I learned that my insurance co-pay was more than $100. I am doubly insured through a group health plan/PPO through my husband’s insurance, as well as having Medicare as my secondary. If I am having trouble financially with my co-pays, then I know others must be as well.

I just couldn’t afford the inhaler and told them to put it back on the shelf. That was when my Walgreens pharmacist suggested that I Google a free savings program like WellRx and see if they had any discounts for the medication I needed.

I did find a discount card online at WellRx.com that helped save on the inhaler and I was able to fill the script after all. I would have never thought of doing something like this without the suggestion of my amazing pharmacist. The WellRx savings program works well for insured people with high out-of-pocket costs like me.

I have faced this situation two more times, one with a medication I was taking daily for years. The co-pay went up so high that without a savings card, I would not be able to pay for it.

The other medication I had to abandon because I couldn’t afford it, even though the savings program provided 50% off what my insurance was going to cover. Nevertheless, it was worth the look to see if I could find a discount. My provider had to substitute the medication for a different one that I could afford, although I am not sure if it worked as well as the one he originally prescribed.

I know how awful and embarrassing it feels to have to abandon a medication at the pharmacy, while you work to come up with a way to pay for it and know that you may never be able to pick it up. Now, I have my pharmacist price the medication through insurance and the WellRx program to see which is less expensive.

Recently a study was published in the Annals of Internal Medicine that showed a direct correlation between the amount of a patient’s out-of-pocket cost and the likelihood of a prescription being abandoned. They concluded that when patients have a co-pay of over $50 they are four times more likely to abandon their prescription than patients who only owe $10.

Leaving a prescription at the pharmacy and failing to follow a doctor’s instructions can lead to major health challenges, such as a condition worsening, increased side effects and symptoms, therapeutic failure, increased medical costs, and in some cases even death. A 2008 Harvard prescription study suggested that opiates, anti-platelets and statins were the least likely to be abandoned, while insulin and proton pump inhibitors were more likely to be left behind.

This is not a new issue for pharmacies, but it has become more common over the past few years. Besides cost, some other reasons for abandoning medications at the pharmacy include e-prescriptions, drug strength, taking the medication for the first time, and not understanding why the medication was prescribed.

But for me and many others, it all comes down to cost. Studies show that the higher the patient’s responsibility financially, the greater the risk of prescription abandonment. The second highest reason for abandonment is younger customers who are wary about the trying a new medication.

The take away for me is that prescription discount cards and pharmaceutical coupons can increase medication compliance, improve patient health, and lower the cost of medical care. I know that by getting the cost down for my medications, I will be more likely to comply with my doctors’ instructions.

The WellRx program I used was free. I wasn’t sure how it was going to work the first time, but the pharmacist just said print the savings card and bring it back. He did the rest for me. He knew exactly how to ring it into their register and didn’t seem to bat an eye or look down at me for using a savings card. They also have an app for Apple and Android phones for those who prefer everything digital.

WellRx also allows you to compare what the price will be at different pharmacies in your area and to search for the best discounts. It is quick and easy, and their program is accepted at more than 60,000 pharmacies across the country. They offer an average savings of 45% off the prescription cost and some of their medications are eligible for savings of up to 80 percent.

Another resource that can help is the Partnership for Prescription Assistance, which helps uninsured and underinsured patients connect with hundreds of public and private assistance programs that provide free or low-cost prescription drugs.

LowestMed has a free mobile app that allows you to research and compare prescription prices at pharmacies in your area. You then show the discounted price on your phone to a participating pharmacy. The price you see is the price you pay.

I love being able to pass savings tips on to others. Prescription discount programs are a great tool not only for the chronically ill, but also for healthy people who have an unexpected medical problem and need help paying for their prescriptions.

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.

Are You Still Hoping for a Cure?

By Rochelle Odell, Columnist

As a 25 year survivor of Complex Regional Pain Syndrome (CRPS/RSD), I ask myself all the time if I have lost hope, become too cynical and if reality has finally hit home.

Yes to all three, unfortunately. And I don't like that.

For most chronic pain conditions, there is usually hope for a cure. But for some there is no hope at all -- people just have to learn to live with the outcome and hope there are doctors who know how to treat it accordingly.

When viewing the main CRPS/RSD websites and support groups, hope for a cure is a common thread. But in reality for me and others like me who have lived with this insidious monster for far too long, there truly is no hope. Medical treatment and modalities have changed little in the 25 years I have battled this disease and that concerns me.

Why haven't greater strides been made? Possibly because researchers and scientists just do not fully understand the human brain yet. Until there is a complete understanding of the mechanics of this disease and others like it, hope ends there.

I recently learned from a friend that her physician, a general practitioner, had little respect for anesthesiologists who treated post-surgical pain and how he felt a patient wasn't treated appropriately. So I looked into when pain management became its own medical specialty.

Pain management became the first sub-specialty of anesthesia in 1993, the same year that I was diagnosed with CRPS/RSD. Most pain management specialists are anesthesiologists, but neurologists and psychiatrists can also become board certified in pain management. The training is long and arduous, but they are among the highest paid in the medical profession.  

When my treatment began, my first pain management physician was still learning and I was his all too cooperative guinea pig. I just wanted the CRPS/RSD pain in my left foot to go away. Would I go down that path again? Never.

My outcome may have been much better without all the “minimally invasive” procedures that were attempted. It started with epidural blocks and progressed from there. The more procedures that were done, the faster the CRPS/RSD spread and the worse the pain became. 

I often wonder where the term “minimally invasive” began. Even though doctors may not go deeply into the body, just by going into our spine or brain for whatever reason, they are venturing into the very nerve fiber of every patient. That is not minimal.

I have read where researchers, scientists and even some pain management physicians now believe that all those minimally invasive procedures may in the end do more harm than good.  Do I believe it?  Absolutely!  But that's just me -- although many long term CRPS/RSD patients will admit that it was wrong for them too.  Most just do not go around talking about this other dark side of the pain. 

There are times I want to scream at a patient: DON'T DO IT! EXPLORE ALL YOUR OPTIONS FIRST. AND ABOVE ALL EDUCATE YOURSELF!

But I don't, I temper my tongue.

Many of us don't believe our physicians as we are rushed through an appointment. We may be allotted only about 10-15 minutes. If you haven't written down your questions and concerns first, you soon realize you are sitting in the exam room with your mouth open as the doctor leaves, telling you to pick up your prescription at the front desk, schedule your next appointment or, worse yet, that they will be unable to treat you any longer. 

This type of inadequate treatment, with your pain increasing and no end in sight, is where cynicism soon develops.  It is also when reality hits you smack in the face and you start to question yourself. What in the hell am I doing here?

When clinical trials are started, they are aimed at a specific group of people, often in the early stages of a disease. There is often a large exclusion list, such as those of us who have had CRPS/RSD for many years. New treatments are not being investigated or developed for us, so the standard nerve blocks, injections, surgical procedures and implants are utilized. And now, because of the opioid crisis, more patients than ever are being dropped.

Treating a CRPS/RSD patient has so many variables. What works for one, doesn't work for the other, and what worked yesterday may not work the next day. Treating us has to be a nightmare for any physician.

I do have hope for patients who are newly diagnosed with CRPS/RSD, absolutely. But at this point in time, unless medical advances are developed, they soon will be walking down the same path so many of us long time pain patients or on, when hope is dashed, and cynicism and reality make a grand entrance.

I get tired of hearing the word “hope” as it has no meaning for me. Yet we are continually told to hope for a cure, to be brave, and to develop a positive attitude. Am I all doom and gloom? Not yet. I still smile and laugh.

But when alone in the dark, when reality hits me once again, I cry. 

Rochelle Odell lives in California. She lives with Complex Regional Pain Syndrome (CRPS/RSD).

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.

‘Catastrophizing’ Doesn’t Mean Pain Is All in Your Head

(Editor’s Note: Last month we published a story about pain “catastrophizing,” and how a new study showed that women who have negative or emotional responses to pain are more likely than men to be prescribed opioid medication. Several readers were offended by the study, as well as our story, feeling they belittled women and their ability to handle pain.

The two co-authors of the study, which was published in the journal Anesthesiology, kindly agreed to address some of these concerns and further explain their research.)

By Yasamin Sharifzadeh and Beth Darnall, PhD, Guest Columnists

Thank you for taking the time to share your thoughts and ideas about our recently published paper on opioid prescription and pain catastrophizing. We would like to address a few concerns brought up and to clarify some of the statements made in our publication.

First and foremost, our study analyzed pain catastrophizing, which has a different and more nuanced definition than terms such as complaining or worrying, that are commonly used to describe it.

Pain catastrophizing is measured via a 13 question survey, with specific subsets used to assess varying aspects of the way we emotionally approach pain. This term is not meant to downplay or discredit pain or its associated emotions. In fact, we use it to better understand the many manifestations of pain.

But for some people, the term “catastrophizing” is offensive. We hear those negative responses, but in clinic, when the term is described, many patients will say:  “I do that!  That is totally me.”  So while not everyone is offended by the term, some people are. It’s important to know that catastrophizing does not mean that pain is all in your head, or your fault, or that you did anything wrong.

Our nervous systems are hardwired to respond to pain with alarm. It is actually an acquired skill to learn to disengage one’s attention to pain and develop strategies that counteract this agitation in the nervous system. Otherwise, it can set us up to have greater distress and pain. This is true for everyone, but for some people the alarm in the nervous system rings louder. 

We sometimes use “negative mindset” as a way to describe difficulties in disengaging from attention to pain or focusing on worsening pain or worst-case scenarios. The science is clear on how our thoughts, attention, and emotions impact pain and pain treatment response.

Whatever the term used to describe this specific form of pain-related distress, it is highly predictive of response to various pain treatments. For this reason, it is important that we identify it and treat it. Not addressing these issues would be neglectful, given the degree to which one’s mindset can undermine treatment response and contribute to suffering.

Men and Women Catastrophize

We also wish to clarify some of the findings of the study. We found that men and women, in a general sample of chronic pain patients, had similar levels of pain catastrophizing. In other words, men and women do not significantly differ in their pain-related emotions. Also, consistent with previous peer-reviewed work, we found that women reported higher than average pain levels.

We took our robust analysis a few steps further to show that in women, pain-related emotions played a bigger role in the likelihood of having an opioid prescription than it did in men. Again, this is not saying that pain catastrophizing played no role in opioid prescribing for men -- just that it had a higher effect in women despite equal levels of pain catastrophizing between the sexes.

Overall, we view our study as a stepping-stone towards an improved understanding of both the physical and emotional manifestations of pain.

Pain catastrophizing is a unique term that describes just one of many ways that we can look at pain-related emotional distress, and it is not meant to discount pain in any way. Rather, it validates the importance of treating pain comprehensively in order to attain better results.

We hope that this study helps people with pain look at pain from many angles and work with their physician to find the solution that works best for them.

Yasamin Sharifzadeh is lead author of the study. She is a second year medical student at Virginia Commonwealth University.

Beth Darnall, PhD, is senior author of the study.  She is a clinical associate professor at Stanford University School of Medicine and author of 3 books:    "Less Pain, Fewer Pills," "The Opioid-Free Pain Relief Kit," and a forthcoming book entitled “Psychological Treatment for Chronic 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.

What It’s Like to Get a Lidocaine Infusion

By Crystal Lindell, Columnist

So I’m kind of annoyed at the wellness people out there for making the word “infusion” sound like something vitamin-related that rich people get at the spa right before a couple’s massage and a facial.

That is not what an infusion is. At least, that’s not what a lidocaine infusion is. It’s also not a shot. That seems to come up at lot. Everyone thinks I went into the hospital, got a quick shot in the arm, and then went to Chipotle. Again, that is incorrect.

I recently got my first lidocaine infusion at the recommendation of my pain specialist and my primary care doctor. They were hoping it would help me with the daily pain I have on my right side from what they think is intercostal neuralgia —  basically I always feel like I have a broken rib.

I was really apprehensive about trying it though, and the only reason I agreed to do it was because my primary care doctor strongly encouraged me to try it and I trust him. We’ve been through some stuff together and he has always seemed to have my best interest at heart.

He said of the like five people he knew who tried it, all had found success with it. I’m pretty sure he also is hoping to get me off opioids because it’s a huge hassle for him to write a hydrocodone script these days — all sorts of government regulatory boards are involved and he has to check a drug database every time to make sure I’m not coming up with a red flags. But I get that — I don’t actually love being high all the time either.

The way the lidocaine infusion was explained to me was not super encouraging though. Basically, they give you an IV at the hospital infusion center, and you have to sit there for an hour while they slowly pump the medication into your system. Then, at least for the first visit, you have to sit there for another hour after that and get a saline solution to keep the line open. Then they do a blood test and send you home. Also, you have to bring someone with you the first time, in case you can’t drive home afterward.

If it works, you have to go in every month and do it again.

The doctors told me that they don’t even really know why lidocaine infusions work because the effects seem to last longer than the drug should even be in your system. But they think it somehow blocks pain signals in your body.

On a personal note, I was apprehensive because I spend most days dreaming of living in Paris, and I didn’t want to be dependent on something that I’d have to do monthly and that might not even be available in France. In fact, Paris is why I want to get off the hydrocodone in the first place. It’s harder to get opioids over there.

But, like I said, my PCP was all about this infusion, so I decided to do it. They told me I could expect things like numbness and tingling in my fingers, toes and my mouth, a metallic taste, lightheaded, and a feeling of cotton in my mouth.

And, depending on how it went, I also might get nauseous and dizzy. But, they made it sound like all the side effects would go away as soon as they stopped the infusion, and that I should be fine as soon as it was over.

They did not tell me I would feel like I had been drugged.

I mean, I guess, looking back, feeling lightheaded is kind of along those lines, but the feeling is way more intense than that. At least it was for me.

I brought my mom and sister with me, and thank God I did, because the whole thing ended up being a lot more traumatic than I was expecting.

When they started the infusion I was actually FaceTiming my best friend, who said she could literally see the effects of the lidocaine on me in the span of one sentence. My speech got slower, my head got heavy and I could not think clearly.

“I... don’t... think... I.... can..... talk....... anymore,” I told her. 

“Yeah, I know,” she said before wishing me luck and hanging up the phone. 

I don’t know why I was not expecting such an intense reaction, but I wasn’t. About 10 minutes in, I literally started crying for no reason. And the reason I know I had no reason to cry is that I remember telling everyone around me that I didn’t know why I was crying. 

When I started getting really nauseous, they did stop the infusion and give me some graham crackers, which helped. But as soon as they started again the drugged feeling came back. 

The nurse at the infusion center said a lot patients describe it as having too many cocktails. So it’s past that fun one-or-two-glasses-of-wine stage, but just shy of the blackout-drunk stage. Add in that it all feels like it’s happening against your will, and it’s not exactly a fun two hours.

Also, my legs turned to jelly, and I couldn’t think clearly at all. I was literally so naïve going in that I honestly thought I might be able to get some work done while they were doing the infusion. I was not. All I could manage was lying on my back, asking everyone around me if my lips were swollen, and closing my eyes. 

Overall, it was a lot more like going into the hospital for a small procedure than I was expecting it to be — traumatic, time consuming and hard on my body.

When they finished everything, they just let me get up and walk out of the hospital, but I should have had a wheelchair. My legs did not seem to work at all and my brain was in a fog. I felt like how people in action movies look when they’ve been drugged and kidnapped against their will. 

I was hoping to go home and sleep it off, but I woke up the next day still feeling pretty drunk. All told, it took about 15 hours after the infusion before I felt like I had my brain back. 

Did It Work?

Of course, none of this really matters. What really matters is whether or not this thing worked. And I have to tell you it did — for about six days. 

Then, on day seven I woke up at 1 a.m. feeling like someone was stabbing my ribs and I remembered how much chronic pain sucks. I spent the whole day on hydrocodone trying to get my pain under control. 

Those first six days were glorious though.  I would literally wake up pain free. Healthy even. And I got so much done around the house. I did the dishes, I vacuumed. I went for walks without any pain at all. My body felt like it did before I ever had intercostal neuralgia. It was incredible.

Today is day eight, and I haven’t taken any hydrocodone yet, but it’s early and who knows how I will feel later. 

Maybe day seven was just a fluke. Maybe it was the weather related, or maybe it was because I ate too much sugar and it spiked my inflammation. I don’t know. I’m seeing my pain specialist again in a couple weeks, and we’ll decide at that time if another infusion makes sense for me. I hoping she will tell me that the more infusions you get the longer they last, but I have no idea if that’s the case. 

Whether or not it makes sense for you is another matter altogether. It depends on what type of pain you have, what types of drugs you are already on, and what your feelings are on being drugged.

I will leave you with this though. The nurse at the infusion center said they are getting way more patients for lidocaine infusions for chronic pain and she thought it was directly related to the push to get people off opioids.  The nurse also admitted that the lidocaine doesn't work for everyone, and she was seeing lots of patients who had been managing their pain with things like hydrocodone for decades suddenly being forced to get off them. She said it was hard to watch patients suddenly lose access to drugs that had been helping them. 

But, she also said that for some patients the lidocaine infusions were life changing and a miracle. 

Pain is complicated and how we treat it has to be complicated as well if it’s going to be effective. Maybe lidocaine can help some people, but maybe opioids are the only thing that help others. And maybe, as most of us already know, everyone is different. 

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

From Hopeless to Helping Others

By Jory Pradjinski, Guest Columnist

My chronic pain journey began when I injured my back in 1987, while I was managing an auto repair shop.

I was trying to remove a large pallet from a delivery truck and the pallet was placed sideways in the truck. Another guy and I had to use a large crowbar to leverage the pallet 90 degrees so it could be removed. We had done this many times before. However, when I was ready to turn the pallet I felt something pop in my low back and I ended up in the emergency room. I had herniated my L5-S1 disc.

The doctors tried different types of treatments, but nothing worked. So in 1989, I had to go through back surgery with a fusion. That first fusion didn’t work and I ended up having a second and third, which also failed. Finally, the fourth and fifth fusions were successful.

There were a grand total of five fusions, plus two follow-up procedures, over the course of 7 years before my L5-S1 level was fused. But I continued to have pain that just kept getting worse.

I lost support early on after my second failed fusion, which left me feeling isolated. I knew my family and friends couldn’t understand. With no support system, I retreated into myself and experienced depression, anxiety, post-traumatic stress disorder, dissociative amnesia and a year of suicidal thoughts. I had a hard time keeping a job due to failing concentration levels and extreme pain. I went on disability.

JORY PRADJINSKI

The Transition to Alternative Treatments

In 2006, while I was still having treatments on my back, I was rear ended at a stop light by an inattentive driver of a pickup truck going 50 mph. The accident affected my C5-C6 and C6-C7 discs, gave me a severe concussion, traumatic brain injury and a bruised skull (which I will have the rest of my life). I tried traditional medicine, but it failed to relieve the pain in my arms and hands. My doctor referred me to chiropractic and massage care, which relieved the pain somewhat.

In 2013, I fell face first at home after tripping on a cord. This dislodged my L4 vertebra. I went to an orthopedic surgeon who said they don’t do surgeries for that anymore. That was a welcoming statement to hear. After several months of rest and pain management, the vertebra went back into place. The surgeon then referred me to a chiropractor and several months later I changed to my current chiropractor, which was the best thing I ever did.

She helped me believe in what might be possible. If it hadn’t been for that fall, I don’t believe I would be where I am today because she gave me the hope and treatment that I needed. There truly was a silver lining in this situation.

I worked on reducing my weight, realizing the extra weight was adding to my pain levels, and ended up losing 57 pound. I did not use any special diet or exercise, just changed what I ate. Then, I had to get off the pain medications. I was up to 60mg OxyContin twice a day, plus oxycodone for breakthrough pain. I went through 5 months of withdrawal from the OxyContin.

The changes in my body from the chiropractic adjustments helped me get off the pain medications. The weight loss and getting the medications of out my system also had big impacts on my body. Along the way, I started getting massage therapy, dry needling, supplements, a natural muscle relaxer, an anti-inflammatory, and an herb for pain relief. It was a tough journey during this transition..

Founding ‘Hope Instilled’

I kept having the repeated thought in my head that this is not the way my life should be. I started to think, “I’m here for a reason. I must have experienced all these things for a reason.”

That's when I came up with the idea of Hope Instilled, a non-profit that provides resources and support to people living with chronic pain and illness. Having survived with no support network during my own journey, I wanted to help others with peer-to-peer support groups, which are often a missing link in pain management programs.

We are now building support forums on our website which allow anonymity for members. This also allows us to create different forum topics. We are looking to connect with local pain treatment centers and clinics. Our Facebook group has grown to include members from around the world. All the growth we've experienced came through word of mouth.

I have a positive and optimistic attitude towards life now. There are experiences I’ve endured which have made me enjoy rainy days as much as sunny days. Because I’m alive each day is a blessing.

When we find out we’re not alone there is some healing which begins deep inside. Throughout my journey, no one reached out to me and pulled me up. No one encouraged me to keep going. I was totally alone and survived alone. I look to do my best to help others not face a similar path.

Jory Pradjinski is a chronic pain survivor and the founder of Hope Instilled. Jory is a strong advocate for speaking up and speaking out about chronic pain, chronic illness and mental health conditions.

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 Far Will You Go for Pain Relief?

By Carol Levy, Columnist

In 1991, my surgeon ran out of options on how to help me. I’d had most of the procedures available for trigeminal neuralgia. Even the ones that helped were always short lived.

In a last ditch effort, he tried a dorsal column stimulator implant. It was successful in stopping about 85 percent of my pain. I was still disabled by severe eye pain, but I no longer had the spontaneous pain that could be caused by a simple touch.

Unfortunately, I lost the implant to an infection. A second implant did not help at all and also became infected.

The doctor told me there was nothing else he could do. There was so much scar tissue in my neck, where both implants had been placed, that surgically implanting another stimulator was impossible.

I was inconsolable. This was it.

No medications were helping and I dreaded a new neurosurgical attempt. But how could I refuse, if it might relieve the pain? Pain is different than most other symptoms. We are biologically ordained to do almost anything we can to be free of it.

The doctor understood this. To my astonishment, he had not given up. One day he came to me and said, “I have an idea.” It would be another implant, in the sensory cortex area of my brain,

The surgery would be 100% experimental. Only 12 other people in the world had it. Most of those were for pain in a different area of the brain than trigeminal neuralgia.

But I was in pain. Daunting, intolerable and disabling pain. Of course I said, “Yes.”

Recovering from the surgery was horrendous. I was anesthetized, but repeatedly awakened so they could ask, “Where is the pain? Where is it now?”

Over and over again; awake, torture, sleep, awake, torture, sleep. Finally, there was blessed sleep only.

I was not convinced the implant helped, until it failed 20 years later. Then I realized it had slightly reduced the level of my phantom pain. Not much, but enough that once it stopped working, the pain increased.  It did nothing for the eye pain, but any relief is to be celebrated.

I thought the doctor who took over my surgeon’s practice could fix it, but that was not feasible. The implant was so old the replacement parts were no longer available.

In two weeks he will take the implant out so that I can get an MRI, to see if there is anything else he can do to try and help me (I cannot have an MRI because of the implant).

The funny thing is I’ve asked him, more than once: “Can't you use the newer version and just put the implant back?”  

The answer is always no.

It didn’t occur to me that I was asking him to put me through the torture of the procedure all over again.  Worse still, once I realized repeating the surgery meant repeating the torture, I still found myself entertaining the thought: Maybe I could tolerate it if he would do it.

I cannot imagine putting myself through that horror again - when I think about it sensibly. But, when I think about it from a pain standpoint and how I may get some relief, it seems like a sensible idea.

Thankfully, he's refused so the debate within myself is purely hypothetical. I wonder though, what exactly will we do or entertain if it offers the possibility of ending the pain? How far are we willing we go?

That, in its own way, may be as petrifying as the pain itself.

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.

How An Overdose Can Be Wrongly Reported

By Rochelle Odell, Guest Columnist

I started researching government statistics on overdose deaths a few weeks ago and learned the data is compiled by the Healthcare Cost and Utilization Project (HCUP), which is part of the Department of Health and Human Services.

HCUP keeps databases of ICD codes (International Classification of Diseases), which are built from hospital billing records. Basically, the codes identify what someone was being treated for at the hospital at the time of their death.

I realized that the ICD coding often begins when a person first enters the healthcare system (i.e. a trip to the emergency room or admission to a hospital). I also noticed that ICD codes for opioid overdoses do not separate the legal use of opiates from illegal drug use.

Then I learned that if a person dies, it could be months before the final coroner's report comes out. Does the government go back and change the ICD codes once the actual cause of death is determined?

Unfortunately, they do not.

So it all boils down to whether a person has opiates – any kind of opiate -- in their system at the time of death. If they are a chronic pain patient, there’s a good chance they will have opioid pain medication in their system. But rather than focusing on the true cause of death, everyone seems to immediately assume it was the medication.

I brought the point up with HCUP and told them their numbers were flawed and why. I was surprised to receive a nice email in response, validating my concerns and stating they would be passed along to the correct agency, the National Center for Health Statistics (NCHS).

“We will forward your email to NCHS to see if anything can be done to make the separation between illicit and licit use clearer in the coding,” HCUP replied.

If a citizen can find these flaws in a short time why can't anyone else? And how do I know if my concerns were truly shared and who received them?

As pain patients, we need to ensure that our families are aware that if we die from something unrelated to opiates, they’ll need to advocate for us even in death. Just finding opiates in our system does not mean we died of an overdose.

A good example of what could go wrong – and misreported -- happened earlier this month. A neighbor told me she had been walking her little dachshund when she stopped by a friend's house. The door was ajar, but there was no response. She sends her dog in and gets him to bark. At that point, her friend finally woke up. She had apparently suffered a stroke!

They called 911 and my neighbor waved down the ambulance as it approached. Her friend is in her 60's and right away the EMT verbally stated "it must be an overdose."

My neighbor immediately corrected the EMT and said her friend was not on pain medication and that this was not an overdose.

If my neighbor had not been there to set them straight, her friend may have been taken to the hospital and given the ICD code for a suspected overdose. The code could have followed her throughout her stay at the hospital, and if she had died, her death may have been wrongly reported as an overdose.

We need to stop this nonsense at step one.

Rochelle Odell lives in California. She suffers from Complex Regional Pain Syndrome (CRPS).

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.

Doctor Makes California Pain Clinic a Special Place

By Kristen Ogden, Guest Columnist

Rarely have I spent five days engaged in doing work that left me feeling as fulfilled as my recent stint helping as a volunteer in Dr. Forest Tennant’s pain clinic in West Covina, California.

For the past 3 years, I have been privileged to volunteer whenever I have traveled with my husband, Louis, for his appointments with Dr. Tennant. However, this was the first time I have given much thought to exactly what makes a visit to Dr. Tennant’s clinic such a special experience for his patients and their families.

COURTESY CORIN CATES-CARNEY/MONTANA PUBLIC RADIO

Dr. Tennant and his wife and office manager, Miriam Tennant, sometimes refer to the clinic as a “mom and pop” operation.  If “mom and pop” makes you think of behind-the-times or unsophisticated, think again. 

Hidden in plain view, among the simple furnishings and interesting artifacts of a long career, is a true frontier in medicine, where discoveries are made, causes of rare diseases are pursued with vigor and, most importantly, a place where people suffering from constant pain are helped like nowhere else. 

One thing that stands out about Dr. Tennant’s clinic is the focus on family participation.  He requires prospective patients to be accompanied by a family member on their initial visits and encourages family members to attend.  The active engagement and participation of family is critical to a successful partnership with Dr. Tennant.  Patients and family members are required to sign documents to show their understanding of the off-label use of medications, willingness to participate in research, and acceptance of potential risks involved. 

The role of the family in supporting the patient is critical.  And why wouldn’t it be?  Intractable pain exacts its toll on the entire family.  A person suffering from undertreated severe pain becomes unable to function normally or participate fully in life.  Many face  loss of income, depletion of savings, routine tasks that don’t get done, loss of quality time with family, loss of contact with friends, and the loss of the ability to enjoy life.  Families with excellent relationships and coping skills are greatly affected. The impact on families less tightly bound can be enormous.  

I know many of Dr. Tennant’s patients and their family members.  They are just regular folks, nice people from all kinds of backgrounds, with one thing in common.  Somewhere along the way, their lives were hijacked by a rare illness or disease that bombarded them with unimaginable pain. 

Dr. Tennant’s embrace of patients extends beyond the walls of the clinic and the usual office hours.  During clinic week, you can expect to find him with Miriam enjoying dinner at a favorite restaurant with patients and family members, including many who traveled across the country and are staying in local hotels. It’s common to hear Dr. Tennant say, “We’ll be at Marie’s tonight around 7. Come join us for dinner.” 

Who has ever gone to see a doctor and gotten invited to dinner?  But that’s what he and Miriam do.  It’s another way they engage with families, and demonstrate their interest and care for patients.  They like to get to know their patients as people, not just names on a medical chart.

The informal group dinners bring other benefits.  For some, it is the first time they will meet others who share the agony of intractable pain or share the same illness. You may go to dinner wondering if you will enjoy an evening with strangers, and leave feeling like you have found a new extended family. 

Dr. Tennant always has some new diagnostic test or research study up his sleeve.  Recently, he asked patients to participate in a new DNA study of genetic indicators not previously studied in rare diseases that involve chronic pain.   Every new test and diagnostic tool reveals important information – hormone panels, nerve conduction studies, blood tests for inflammatory biomarkers, and MRI images that may reveal the presence of adhesive arachnoiditis.  

All of these diagnostic research efforts produce new insights.  For example, in a study of over 100 intractable pain patients who require relatively high opioid doses, Dr. Tennant found that 91% of them had genetic defects that impacted their ability to metabolize medications, suggesting why they need higher doses for effective pain relief. 

Another example is the growing understanding of the impact of pain on hormone levels.  Severe chronic pain initially elevates hormones, but if uncontrolled for too long, hormone levels become depleted.  Hormone levels that are too high or too low are biomarkers of uncontrolled pain, and indicate that higher doses of pain medications or hormone replacement may be necessary.  Ongoing clinical research is a key element of Dr. Tennant’s approach to pain care. 

In my visits with Louis to numerous pain doctors prior to finding Dr. Tennant, almost all of them said, “The goal is to get you off those pain medications.” 

I was shocked when I first heard Dr. Tennant say, “The goal is to relieve your pain.” 

Dr. Tennant has the expertise to “see” a patient’s pain and to ask the right questions. His discerning eye can distinguish between intractable pain patients and the few who come to the clinic seeking drugs for the wrong reasons. 

Dr. Tennant understands that most patients have already tried and failed at many different pain treatments.  When that is the case, he tries to determine what will work. The goal is to relieve pain so that the patient has a chance at meaningful improvement of function and quality of life.  There is no demeaning treatment, there are no words said that convey doubt or suspicion, there are no looks that say, “You must be a drug seeker.”  Dr. Tennant’s clinic is one of very few medical facilities I have visited where there was no evidence of stigma toward pain patients. 

An important piece of Dr. Tennant’s philosophy is that if you effectively treat the pain, improvements in function and quality of life will follow.  Dr. Tennant prescribes medication as needed to enable patients to effectively manage their pain, which in turn helps to stabilize their overall condition, while the underlying causes are identified and treatments are attempted.  If a patient’s pain remains undertreated, the likelihood of successfully treating the underlying causes is greatly reduced.

Transforming Pain Care

The Institute of Medicine’s 2011 report, Relieving Pain in America, called for “a cultural transformation in the way pain is understood, assessed, and treated.”  The characteristics I would seek in such a transformation of pain care are visible every day in Dr. Tennant’s clinic.  I wish that other doctors who treat chronic pain could get outside the bounds of their particular specialties and professional societies to view their patients differently. 

As Dr. Tennant’s research has moved forward, he has found that the majority of chronic pain patients who go to his clinic have 4 or 5 rare disease conditions:  adhesive arachnoiditis, post-viral autoimmune disease, Reflex Sympathetic Dystrophy (also called Complex Regional Pain Syndrome), and connective tissue disorders such as Ehlers-Danlos Syndrome.  All of these conditions are often accompanied by very severe, constant pain. 

In the last few years, Dr. Tennant has made great advances in identifying and treating the underlying causes of intractable pain.  He credits two recent scientific advances for enabling him to treat the causes rather than just the symptoms of pain. First, we now know that microglial cells within the central nervous system, once activated by a painful injury, disease or trauma, cause inflammation inside the brain and spinal cord.  This neuro-inflammation causes chronic pain to centralize in the spinal cord and brain, resulting in severe pain that is constant. 

Second, we now know that nerve cells may regrow, a process called neurogenesis.  Certain neuro-hormones in the brain and spinal cord can promote neurogenesis when neuro-inflammation is reduced.  Dr. Tennant’s approach is to reduce neuro-inflammation while simultaneously promoting neurogenesis.  His protocols for treatment of neuro-inflammation are in their early stage, but they are already providing disease regression, enhanced pain relief, less suffering, and, for some patients, reduction in the use of opioids. 

It is a true privilege to work as a volunteer in Dr. Tennant’s clinic.  When I asked him in 2014 if I could be a volunteer, I had two specific reasons:  to learn more so I could fight back against our insurance provider (who had suddenly decided to reduce the reimbursement for my husband’s pain medications), and to educate myself so that I could become an effective advocate for chronic pain patients.  We lost the battle with the insurance company, but I have certainly received an education that very few people have a chance to experience. 

Dr. Tennant’s methods and approaches are not proprietary -- he's eager to share them. There are many good doctors out there who could learn to do what he does, instead of focusing solely on the treatment of pain as a symptom. It doesn’t require a fancy clinic, lots of money, and corporate or university infrastructures.  What it takes is a doctor who is truly committed to relieving pain and practicing the art of healing. 

It is possible to manage pain with medicine instead of injecting the spine, inserting stimulators and pumps, or using other invasive procedures.  Instead of treating pain with these modalities, treat and relieve the pain with medication, stabilize the patient, and search for the underlying causes so that they can be addressed. 

At age 76, Dr. Tennant could have retired and given up his practice many years ago. Why does he put up with the many challenges of operating a pain clinic?  Because he truly cares about helping people who are suffering.

Kristen Ogden has advocated for her husband, a long-term intractable pain patient, for over 20 years.  She is the co-founder of Families for Intractable Pain Relief, an advocacy group for pain patients and their loved ones.

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.

Leaving Pain Untreated is Torture

By Janice Reynolds, Guest Columnist

One thing we need to keep in mind when discussing the so-called opioid epidemic is that people in acute pain are being persecuted and harmed, as well as those with persistent (chronic) pain. In fact, much of the witch hunt may have started with acute pain.

It has long been known that when acute pain is left untreated or undertreated it can lead to persistent pain, as well as a multitude of harmful side effects from pain.  I know my persistent post-craniotomy pain was at least partially caused by poor pain treatment after my surgery. Eight years later, I can still vividly recall the second night post-op, when the pain was horrendous. I cried and really wanted to die.

People in pain have always experienced prejudice and bias.  The current situation has allowed bigots to speak and act with impunity.  As with anything, you tell a lie often enough and it must be true.

Anyone who has worked in medicine has heard a physician, nurse, pharmacist, physical therapist, etc. make derogatory statements, refuse to prescribe appropriate medication, express opiophobia, and sometimes even hatred for people in pain.  Sometimes it can even be family members. 

I have two favorite stories that I’ll share. And believe me, after over 20 years as an advocate for people in pain, I have a lot of stories.

As a new nurse, I once had a patient admitted with severe abdominal pain and headaches. The doctor would only give her Tylenol.  He would go off duty, and I would call the covering physician and get morphine ordered.  The doctor would come in the next morning and discontinue the morphine, leaving her with nothing but Tylenol. 

The patient was diagnosed with cancer, and the doctor claimed her pain was just a reaction to her diagnosis (and some nurses bought into that!). 

I finally couldn’t take it anymore and told the family they could request another doctor (I could have lost my license for coming between a doctor and his patient). I suggested an oncologist, who was also a palliative care doctor, who I knew as compassionate and good at pain management.

The oncologist took over and got her comfortable. She died two weeks after the admission for acute pain.

The second story was in the midst of the AIDS epidemic. I had a patient who was dying (she had been a prostitute and IV drug user).  When I attempted to get more morphine for her because she was literally writhing in pain, the doctor refused, saying, “She should have considered her lifestyle choices before.”

In 2001, when the Joint Commission of Accreditation of Healthcare Organizations (JCAHO) came out with the first standards for pain assessment, we were ecstatic.  We were going to make pain visible and more people would get better treatment. 

Unfortunately, that is not how it worked out.  The anti-opioid activists were vocal about how the standards would push doctors to prescribe opioids, enable drug seeking, and so on.  Some even blamed the pharmaceutical industry, even though it had absolutely nothing to do with the standards. They were written by a professor of pharmacology and a nurse practitioner experienced in pain.

Fifteen years later, so many of these myths were still circulating that the Joint Commission felt compelled to come out with a statement refuting them.

Many actions now being taken affect acute pain care the most, such as removing pain questions from patient satisfaction surveys and poor treatment in hospital emergency rooms.  A hospital in New Jersey won praise and international attention for sharply reducing the use of opioids, until it was found to be in the bottom 3% of hospitals nationwide for quality of care.

Now they want to prevent opioids from being ordered for so called “minor” procedures and to limit the amount of opioids or number of days they can be prescribed for acute pain. And although pain care for cancer patients and the terminally ill is still touted as sacred, it isn’t as good as it should be and is losing ground.

You would think because pain can affect anyone at anytime that there would be more compassion. Yet we have politicians saying, “Yes, children need their pain relieved, however with the opioid epidemic they shouldn’t be receiving these powerful drugs” or “We need to be able to objectively measure pain.”

Torture, for the most part, relies on pain.  I realize there is water boarding and psychological torture, however inflicting pain is the method used throughout history. Politicians and the media are against torture, yet they do not see the mistreatment of pain as torture. It is actually torture of the worst kind, perpetuated by those who profess to have your best interests at heart.

A quote I always used in my classes and presentations comes from The Culture of Pain by David B. Morris:

“Failure to relieve pain comes perilously close to inflicting it.”

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country on pain management and is co-author of several articles in peer reviewed medical journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them.

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.

Senate Bill Would Protect Marijuana Use in Legal States

By Ellen Lenox Smith, Columnist

A group of bipartisan U.S. senators has announced plans to reintroduce a bill that would allow state medical cannabis laws to supersede the current federal prohibition. The bill would also greatly expand opportunities for medical and scientific research of medical marijuana.

The Compassionate Access, Research Expansion and Respect States Act – also known as the CARERS Act – is being sponsored by Senators Kirsten Gillibrand (D-NY), Cory Booker (D-NJ), Al Franken (D-Minn.), Rand Paul (R-KY), Lisa Murkowski (R -Alaska), and Senator Mike Lee (R -Utah). The House version is sponsored by Reps. Steve Cohen (D-Tenn.) and Don Young (R-Alaska). 

"The fact is our marijuana laws in America are broken," Sen. Booker said at a press conference. "They are savagely broken, and the jagged pieces are hurting American people."

The CARERS Act was originally introduced in 2015, but did not move forward. Back then, the bill only had three sponsors: Sen. Booker, Sen. Gillibrand and Sen Paul.

A big change from 2015 is that a new administration now occupies the White House and there are fears the Justice Department could once again start enforcing federal marijuana laws in states where it is legal.

Some in Congress do not want the feds messing around again with legal cannabis.

“The people have been pretty clear that this is something they don’t want the federal government to interfere with,” said Rep. Earl Blumenauer (D-Oregon).

If passed, the CARERS Act would leave in place laws legalizing medical marijuana in 30 states, the District of Columbia, Puerto Rico and Guam, and protect their citizens from federal prosecution. The bill would also allow veterans to access legal cannabis in those states. Currently, there are federal regulations that bar doctors in Veterans Affairs hospitals from prescribing cannabis to their patients. Veterans caught with marijuana in the system are also being denied access to opioid pain medication.

While running for president, President Trump said marijuana laws should be decided at the state level, but then he tapped Jeff Sessions to be his Attorney General. It is clearly known through his words and actions that Sessions does not believe marijuana should be considered a legitimate medicine, despite the beneficial impact noted by medical professionals across the globe.

In fact, Sessions sent a letter to Congressional leaders back in May, asking them to undo a provision in federal law that bars the Justice Department from going after legal marijuana businesses.

"I believe it would be unwise for Congress to restrict the discretion of the Department to fund particular prosecutions, particularly in the midst of an historic drug epidemic and potentially long-term uptick in violent crime," Sessions wrote. "The Department must be in a position to use all laws available to combat the transnational drug organizations and dangerous drug traffickers who threaten American lives."

But supporters of the CARERS Act feel Sessions' thinking is very wrong, especially when it comes to people gripped with chronic pain or conditions such as epilepsy.

Clinical studies have found that cannabidiol, or CBD as it's commonly known, can reduce epileptic seizures in children and young adults as much as 45 percent. The CARERS Act would take CBD off the list of controlled substances, thus allowing children in states where medical cannabis isn't legal to access the life changing oil.

"I dare him (Sessions) to sit down with families and listen to their stories and then pursue a policy like he's advocating for now," says Sen. Booker.

An uphill battle is expected, but the effort is picking up steam. Many red states have now passed some form of legal cannabis.

"I believe things are changing and they're changing fast," Sen. Gillibrand told Rolling Stone. "I think we will get the support we need."

Let’s write and/or call our Senators and ask them to not only support, but also co-sponsor the CARERS Act. To reach their D.C. offices, you can contact the Capitol switchboard at 202-224-3121. To send an email, check this website for their email addresses.

You can also go to this link set up by Americans for Safe Access to contact your Senator.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their 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.