Why Are They Being So Cruel?

By Debbie Duke, Guest Columnist

I am 63 years old and have been on pain meds consistently since the age of 38.  I have systemic lupus and scleroderma, which fortunately is in remission.  I also suffer from gout, fibromuscular dysplasia, scoliosis, kidney pain and post-operative pain from breast cancer surgery.

My experience with pain management doctors in the beginning was very pleasant and I was getting relief from my agony. I was disabled but still functional due to pain medication. 

But recently things have changed.  After several years of using a pain pump, I decided to go back to oral medication to have more control.  The pump was not that effective for breakthrough pain and made me feel disconnected. After giving up on the pump, I changed doctors and the new one gave me the medication I had been before.

On my last visit, he said a new law requires patients on pain meds to have no more than the equivalency of 90mg of morphine.  Then he cut my dose in half.  I am now in agony and can see why people would turn to other ways of getting relief or decide to end it all. 

I love life and have many reasons to live. I care for a grandchild who had nearly been lost to foster care. Now, due to my inability to get around very well, I may not be able to continue taking care of her. 

DEBBIE DUKE

I can't bear to think of it. 

Why are they being so cruel to those of us who are law abiding, while the crooks get away with it?  When someone grabs grandma's meds from her purse or medicine cabinet, why is that grandma’s fault? 

Overdoses have been around for years and years. Who did we blame?  The one who stuck the needle in their arm, that's who.  Yes, we have a drug epidemic, but do something about the drugs coming across our borders. There has been enough squeezing of patients. Give them what works for them.  It sickens me to see patients treated unjustly turning to other ways to help themselves.

I'm truly afraid that everything in my life as I know it will end.  Thanks to irrational politicians who have taken away our right to be as free of pain as possible.

I think sometimes about what will be said in the future.  We'll be saying, “Remember the days when we were able to have pain relief and no one had to suffer?”

I know that people are dying, but to equate prescriptions with illegal drugs to make some political point is wrong. I wish those that are in pain could march down Pennsylvania Avenue. But we are too sick for that. 

Debbie Duke lives in Florida.

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.

The Hidden Costs of Patient Advocacy

By Barby Ingle, PNN Columnist

I have been advocating for chronic pain patients and the pain community since 2006. I started advocating because my chronic pain journey was long and hard, yet my story was by no means original. What happened to me was happening to far too many others. We were being ignored by the medical system and had lost our voices. 

I decided that it was time to get my voice back. 

I first started advocating for myself with my own providers, then started going to doctor’s appointments with other patients, followed by peer-to-peer mentoring of other patients and attending health events. Within a few years I was being asked to be the patient representative at many conferences. 

I didn’t start using social media until 2009. Doing so opened up a whole new set of ways to advocate. I began connecting with people all over the United States and the world. In 2010, I was invited to testify at a Defense Department hearing in Washington, DC and also at the Arizona legislature. 

I had patients attack me on social media for not being sick enough. Well, they haven’t seen me at my worst! What they saw was the branding and marketing image of me, which puts an emphasis on positivity. 

I recently watched an argument on social media over how much advocacy costs. There were two sides to the argument. On one side were those who think advocacy should be free and that it costs nothing. The other side was saying that money is needed to fund advocacy work and that people should donate to pain organizations who do it for them. 

If you asked me during my first 5 years of advocacy, I would have said it is free to be an advocate. But over the past 7 years I’ve learned that there are many hidden costs outside of the time you volunteer. 

As an advocate who makes phone calls, your monthly phone bill would be a minimum of $25 for each phone line per month, plus another $20 for unlimited long distance. For online advocacy, internet service fees would be about $45 monthly. That’s not counting the cost of a computer, printer, telephone, office space, supplies, newsletters, etc.

Whether you are going for in-person advocacy or mailing letters, you need to take the time to research the issues and work on prep materials. That may take 10 to 20 hours per issue. If you are lucky enough to be paid for your time ($15/hour is the proposed national minimum wage), that would be a minimum salary of $150. 

Traveling to your state capital could cost a tank of gas, plus your time. That is not much. But to go to meetings in Washington, DC – as dozens of advocates recently did to attend an FDA hearing -- you will need to pay for your flight, hotel, meals and ground transportation.  

When someone like myself is paying for most of these costs privately, it adds up to tens of thousands of dollars a year. Can you do it for less? Yes, but then you are getting less out of your advocacy work and it is going to be harder to make a difference. 

We do need individual patients to write letters, make phone calls and call for change. But to say that there is no cost involved is really not accurate at all. There are many other costs, like writing social media content, pamphlets, resource materials, business cards, etc. that should be taken into consideration.

Just recently Don't Punish Pain rallies were held across the country. The campaign is said to have begun with one woman and a stack of index cards, but that doesn’t factor in all the other costs of signs, banners, telephone calls, and posting on social media, or the hundreds of people who volunteered their time to organize and attend the rallies. 

Advocacy costs at all levels. Recently I heard from a patient who was on workers compensation, who lost her provider and medical care because she was so involved in advocacy they thought she had a job. 

There are millions of dollars involved in advocacy and the work takes time, effort, heart and care. Please know that I am glad for all advocates and the help that comes from any efforts they make. We are not thanked a lot. 

I send out big thank you notes to everyone who has sent an email, made a phone call, testified in person, attended a doctor’s appointment with another patient, and made a difference for even one other person. Whether you are paid for your advocacy work or not, it has value and it does at minimum cost us energy pennies! 

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.

Addiction to Rx Opioids Falling

By Pat Anson, Editor

A new report from health insurance giant Blue Cross Blue Shield highlights a little-known and rarely reported aspect of the opioid crisis: Addiction to opioid pain medication is declining, not increasing.

Blue Cross Blue Shield (BCBS) said 241,900 of its members were diagnosed with opioid use disorder (OUD) in 2017, a rate of 6.2 for every 1,000 BCBS members. The rate fell to 5.9 in 1,000 members in 2017, a decline of nearly 5 percent. The insurer said it was the first drop in the eight years BCBS has tracked diagnoses of OUD.

"We are encouraged by these findings, but we remain vigilant," said Trent Haywood, MD, senior vice president and chief medical officer for BCBS said in a statement.

"More work is needed to better evaluate the effectiveness of treatment options and ensure access to care for those suffering from opioid use disorder."

BCBS attributes much of the decline to a 29% drop in opioid prescriptions for its members since 2013.  A longtime critic of opioid prescribing hailed the findings as a sign of change.

"It means that there's light at the end of the tunnel," psychiatrist Andrew Kolodny, MD, the founder and executive director of Physicians for Responsible Opioid Prescribing (PROP) told BuzzFeed.

"Unfortunately though, the genie is out of the bottle," said Kolodny, a former medical director of the addiction treatment chain Phoenix House. "Millions of Americans are now struggling with opioid addiction. Unless we do a better job of increasing access to effective treatment, overdose deaths will remain at record high levels and we'll have to wait for this generation to die off before the crisis comes to an end."

Admissions for Addiction Treatment

The BCBS numbers should be taken with a grain of salt, since they include all types of opioid addiction, including those linked to heroin, illicit fentanyl and prescription opioids. A more accurate way to track addiction to opioid medication would be admissions to publicly-funded treatment facilities for “non-heroin opiates/synthetic abuse” – a category that excludes heroin, but includes hydrocodone, oxycodone, fentanyl and other painkillers.

A database maintained by the Substances Abuse and Mental Health Services Administration (SAMHSA) shows that treatment admissions for prescription opioids peaked in 2011 at 193,552 admissions and fell to 121,363 by 2015 – a significant decline of over 37 percent. It seems likely that admissions for painkiller abuse have fallen even further since 2015, as opioid prescriptions have continued to plummet, and more pain patients are abandoned or denied treatment.

The SAMHSA data also reveals another trend: While the number of people seeking treatment for painkiller, alcohol and marijuana abuse has declined, admissions to treatment facilities for heroin addiction have soared. In 2010, there were 270,564 admissions in which heroin was identified as the primary substance of abuse. By 2015, that number had grown to 401,743 admissions – an increase of nearly a third.

ADMISSIONS TO ADDICTION TREATMENT FACILITIES

SOURCE: SAMHSA

Admissions for heroin addiction now surpass those for other substances, yet much of the nation’s spending and law enforcement resources remain targeted on opioid prescriptions. Many public health officials also cling to the myth the heroin epidemic was triggered by opioid overprescribing, even though heroin admissions outnumber painkiller admissions by a 3 to 1 margin.

“Epidemiological data show that as widely prescribed opioids became less accessible due to supply side interventions, heroin use skyrocketed,“ psychiatrist Nora Volkow, MD, director of the National Institute on Drug Abuse, recently told OpioidWatch.  Volkow was an early supporter of the CDC opioid guideline, one of the first supply side interventions, a strategy that she now characterizes as "naive."

“Expecting that declines in rates of prescribed opioids could, by themselves, stem the tide of the opioid crisis is naïve and an oversimplification of the complex nature of the crisis," Volkow said. "Legitimate questions have been raised about whether some pain patients might now be undertreated, and whether tightened prescribing practices over the last few years has contributed to the surge in overdose deaths from heroin and especially fentanyl.”

A recent study by SAMHSA found that deaths linked to illicit fentanyl and other synthetic opioids surpassed overdoses involving pain medication in 2016.  The study also found that drugs used to treat depression and anxiety are involved in more overdoses than any other class of medication.

Living with a Beast

By Cathy Kean, Guest Columnist

I am living with a beast who is cold, heartless, unmerciful, uncaring and cruel. Always lurking around me, making my life so challenging, so exhausting, and so painful. Not only physically, but mentally, spiritually and emotionally.  

This beast has taken so much from me, I hardly remember how it was before it came into my life. Of course, I had challenges and difficult times. But I was functional and happy. And I could cope! I could manage! 

Now I have had to deal with this evil and vindictive beast.  I live day in and day out in my cave (my bedroom), lying in bed. I rarely venture out anymore.  I've become isolated and alone; so different from the life I used to live. 

I wish that I had swallowed and drunk up and absorbed the greatness and beauty of the life I had before, and not taken it for granted. What I wouldn't do or give to go back to that time! 

I mourn me. I miss me. I know my kids and my grandchildren miss me. The woman I used to be was energetic, vivacious, outgoing, industrious, loving and friendly. There wasn't a person that could walk by me without me engaging in some kind of banter.  I loved life so much more then!

Now I am attacked when I least expect it. I have no way of knowing how or when, because the beast is always present, always lurking around. It has hurt my family, my career, my outlook and my sense of self. I am followed everywhere.

When the beast is angry, my days are hell and my nights sleepless. It is behind me, beside me, everywhere, every day.  I truly cannot remember a time that I lived totally out of its grasp.

This fiend’s name is PAIN.

Pain is brutal, savage and barbaric at times. Pain cares little for family occasions, social events or holidays. Pain forces me to stay home, ensuring I don’t forget its brute presence for a second. The beast has been a silent witness to some of the most extraordinary and excruciatingly painful moments of my life.

There are so many who live with this insidious beast, just like I do. We do our best to keep on living, despite pain's germinating presence. You never become immune to the torturous, aching, stabbing, aching and suffering that pain brings, regardless of how long you live with it.

I am trying to learn that this is my new normal and I must continue with my life. I try to smile, laugh and engage, despite the struggle, strain and toil it causes. But I feel like I have been robbed!

I need to tell those who do not have chronic pain a little secret.

It hurts all day, every day, 24/7.

365 days a year.

It never stops.

It never ends.

You eat, it hurts.

You sleep, it hurts.

You just exist, it hurts.

You rest, it hurts.

You breathe, it hurts.

Every single aspect of every single day, it hurts.

And now without my essential tools (my medications) that gave me functionality, my quality of life has diminished 98% due to CDC guidelines. I truly don't know how much longer I can stay in this fight, this madness, this torment and this torture.

Constant and chronic pain isn’t something you can deal with for a long period of time. My organs are starting to shut down. I am blacking out constantly. I am having cardiac issues. I am in so much pain, I pray to God to take me!

I have begged my adult children to please not be angry with me if I take my life. I want to be here! I want to see my grandbabies grow up. I want to engage in life again!

I made a difference in peoples’ lives. I used to be a parent's last hope for true help and success when I had access to my medications. I was a special education advocate and I was good! I knew those feelings of desperation, not knowing where to turn or what to do for your child.

I just wish the government, our families, friends, and society would see us as human beings with value. Please be more compassionate, more loving and more accepting of our limitations.

No one would ask or want to live with this beast, this madness! I promise you!

Cathy Kean lives in California. She is a grandmother of 7 and mother of 4, who has chronic pain from lupus, fibromyalgia, Parkinson's disease, and stiff person syndrome. Cathy is a proud member of the Facebook group Chronic Illness Awareness and Advocacy Coalition.

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.

DEA Adopts Rule to Further Limit Opioid Production

Pat Anson, Editor

The U.S. Justice Department has finalized a new rule that will allow the Drug Enforcement Administration to reduce the amount of opioid pain medication a drug maker can produce if it finds the opioid is being diverted or misused.

The controversial change in the opioid production quota system was adopted despite warnings from patients, doctors and drug makers that it targets the wrong the problem and could worsen shortages of some pain medications.

The DEA maintains the rule change will “encourage vigilance” on the part of opioid manufacturers to prevent their drugs from being abused.

“These common-sense actions directly respond to the national opioid epidemic by allowing DEA to use drug diversion as a basis to evaluate whether a drug’s production should be reduced,” said DEA Acting Administrator Uttam Dhillon in a statement. “This also opens the door for increased communication and better information sharing between DEA and individual states, as we work together to address the opioid problem plaguing our country.”

The final rule greatly enhances the roles played by states and other federal agencies in setting opioid production quotas. It requires DEA to share proposed quotas with state attorneys general, who could object to a quota and demand a hearing.

The rule also allows DEA to consider “relevant information” from all 50 states, the Department of Health and Human Services, Food and Drug Administration, the Centers for Disease Control, and the Centers for Medicare and Medicaid Services, before setting a quota.

"DEA must make sure that we prevent diversion and abuse of prescription opioids. Today's new rule, by taking diversion of these opioids into account, will allow the DEA to be more responsive to the facts on the ground. More importantly, it will help us stop and even prevent diversion from taking place,” said Attorney General Jeff Sessions.

Sessions announced the proposed rule changes in April, and DEA received over 1,500 public comments during an unusually short comment period. A clear majority opposed the new rule.

“This does nothing to stop addiction or overdose deaths. Addicts will find a high anywhere and where they find it now is street drugs! Illicit drugs are what’s killing, not doctor prescribed opioids filled at a pharmacy. The reporting you all are using is inaccurate and false,” wrote Amy Vallejo.

“By creating quotas, and thereby shortages, you are committing torture,” said Kimberley Comfort, who lives with arachnoiditis, a chronic spinal disease. “There is no reason why people having surgeries, people who suffer from incurable diseases, should be left to suffer when we are a nation that has the ability to take care of its citizens. The DEA does not have a clear understanding of the so-called opioid crisis and therefore needs to cease and desist making opiates harder to get.”

“Again, we have the DEA making laws and quotas on something they should not be. Let them worry about the drugs coming in from China, Mexico etc. which are illegal,” said Sarah Yerxa. “By cutting the quotas all they are doing is sending needy pain patients to the streets, which will just raise the addiction... and overdose problem.”

Opioid Shortages

The DEA has already made substantial cuts in opioid production quotas, reducing them by 25 percent in 2017, followed by another 20 percent cut in 2018. This year’s cuts were ordered despite warnings from drug makers that reduced supplies of opioids “were insufficient to provide for the estimated medical, scientific, research and industrial needs of the United States.”

Many hospitals and hospices now face a chronic shortage of intravenous and injectable opioids, which are used to treat patients recovering from surgery or trauma. The shortage has been primarily blamed on manufacturing problems, although some critics say it has been worsened by the DEA production cuts.

“I believe Attorney General Jeff Sessions needs to sit down and talk to some of these physicians who are pain specialists and understand that what he’s doing is going to put the chronic pain patient, the post-operative patient, and the patient that comes to the emergency room in serious jeopardy,” Tony Mack, CEO and chairman of Virpax Pharmaceuticals, told PNN in an earlier interview.

“I think that Jeff Sessions is not educated well. I think he is picking on something that sounds good politically but doesn’t make sense socially. It’s socially irresponsible.”

In a public notice announcing the rule change, the DEA said it was not responsible for “perceived shortages” of injectable drugs and blamed the “manufacturer induced shortages” on “internal business decisions.”

The agency also deflected criticism that it was targeting the wrong problem. Recent studies indicate that overdoses involving illicit fentanyl, heroin and other street drugs now outnumber deaths linked to prescription opioids.   

“The DEA acknowledges that prescriptions for opioid drug products have decreased over the last several years due to the stepped up civil, criminal, and regulatory enforcement efforts of the agency. However, while there is a downward trend in prescribing, these Schedule II prescription opiates continue to have a high potential for abuse and dependence and require the annual assessment of quotas,” the DEA said.

The agency also claimed prescription opioids were “inextricably linked” to overdoses from heroin and illicit fentanyl, because many addicts start by taking pain medication from family medicine cabinets and then move on to street drugs.

The DEA statement defies some of its own analysis. Less than one percent of legally prescribed opioids are diverted, according to a 2017 DEA report, which also found that admissions for painkiller abuse to publicly funded addiction treatment facilities have declined significantly since 2011, the same year that opioid prescriptions began dropping.

6 Emotional Stages of Chronic Pain

By Ann Marie Gaudon, PNN Columnist

Emotions are part of our life experience and influence how we cope with challenging situations such as chronic pain.

Emotional responses to pain are not “bad” or “negative” because they are a natural response to life events. For example, depression is often seen as a sign of poor health, but it can also be a way of conserving bodily energy.

Emotions are never a sign of weakness. Emotions are adaptive responses which have helped us survive as a species.

Did you know there are normal emotional stages of injury and pain? Not everyone goes through every stage and it is not a linear process. Sometimes we bounce from stage to stage in no particular order.

Let’s look at these 6 emotional stages of chronic pain:

Denial

Denial is when we refuse to acknowledge how we feel and try to conceal the problem. When we’re in this stage our thoughts are likely: “It’s probably nothing serious” or “It will pass soon enough.”

Typical denial behaviour would be to ignore the pain, keep going as though you’re not in pain, failure to seek medical attention, and not following medical advice. Basically, you’re acting like nothing is going on in your body.

Denial is also culturally reinforced by beliefs that we should “suck it up, don’t complain and keep working.”

Fear and Anxiety

We feel fear and anxiety when the reality of something wrong hits home. You will likely be thinking quite repetitively during this stage. Typical thoughts would be: “Something is very wrong” or “What’s going to happen to me?” 

In this stage, your behaviour might be to rest and withdraw or avoid activities to protect yourself from further injury or pain. You will find yourself preoccupied with a lot of worry. You will likely begin to scan your environment and your body for threats to either, and it will be hard to commit to work or play.

Depression

Depression is the most common response to chronic pain and tends to come after fear and anxiety. Your thoughts would be normal in this stage if they were: “What’s the use?” or “Why bother with anything anymore?”

Realize none of this is enjoyable or desired; it is a normal response to chronic pain. Your behaviour would be to reduce participation in normal physical activities – even the enjoyable ones.  Social withdrawal would continue as a protective adaptation and you might experience problems with sleep.

Depression can impair your sense of self and you may grieve the loss of your identity. If you’re not an employee and parent anymore, then who are you? It is normal to withdraw in depression when your world shrinks in size.

Anger

Another emotional stage, and one I am quite familiar with, is anger. This defensive behaviour is the “fight” in the fight-flight-freeze response. It energizes you to resist the problems that come with chronic pain, and to ward off danger and restore safety. Normal angry thoughts about your pain would be: “It’s not fair” or “Why me?”

Behaviours in this stage can sometimes be troublesome, as they may become impulsive (acting or speaking quickly without thinking it through) or compulsive (repetitive behaviour not serving a purpose). You may overreact to smaller things and blow up at others. You might also engage in risky behaviour such as abusing alcohol or other substances to try to numb yourself.

The key is to express your anger in a healthy manner and hopefully transform it into affirmative action.  This is where you find the message in your anger and put it to work for you. I put my anger to work for me as I advocate for chronic pain patients on a regular basis.

Shame

Shame is not to be confused with guilt. Guilt says, “I’ve done something bad” while shame says, “I am bad.” Shame comes from how we see ourselves as damaged goods and can lead to feelings of self-loathing and disgust. You might think: “I’m worthless” or “I’m a complete failure.”

As a therapist, I find this to be a particularly powerful and difficult stage for clients, as shame often takes up all the space in the room. Behaviours in this stage would be continued social withdrawal, a decrease in assertiveness and self-confidence, and possibly self-destructive behaviours such as abusing alcohol or drugs.

Acceptance

The final emotional stage of coping with chronic pain is acceptance. Some patients reach this stage fairly quickly and others never reach it.

Let me be crystal clear about acceptance: It does not mean that you want this pain or that you like this pain and gladly accept it. Absolutely not. What it does mean is that you accept yourself without judgment, you live in the present moment, and you accept what is. Your thoughts will be along these lines: “This is not my fault” or “I can and will cope with this.”

Behaviours begin to change in this stage. You will be less focused on the past and have more realistic expectations of yourself. You will maintain appropriate levels of physical activity, use medications appropriately, reduce your emotional stress, and begin to experience feelings of peace rather than constantly beating yourself up.

Acceptance does not mean that you no longer feel any of the other emotions.  You may still experience feelings of denial, fear and anxiety, depression, anger and shame, but they will be less often and with less intensity.

Acceptance -- which includes hefty doses of self-compassion -- does not cure anyone’s physical pain, but it does facilitate better coping and reduced emotional stress. You do not accept pain because you want it or like it, but because it is here, you have it, and you respond to it in a kinder, gentler way.

The purpose of acceptance is to engage in activities that you feel have value. Within this purpose, acceptance becomes relevant and necessary. As a consequence, there is often less time spent struggling against and trying to avoid pain -- time freed up to engage in more valued pursuits.

It may take some time and support to acquire this tool, but once you have, it’s yours for life. Double entendre fully intended.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit 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.

Betrayed by My Doctors and My Government

By Jeff Watt, Guest Columnist

I was a nurse and that career gave my life purpose.  I felt like I was making a difference in my patients’ lives.  However, in October of 2014, the healthcare system that employed me destroyed me.

I was experiencing stiffness in my neck and had some red spots on my legs.  I also had a fever that broke the night before.  That was it. 

Unfortunately, because I went to the ER to figure out what was going on, they decided to do a spinal tap.  The physician attempted 3 times and failed, so another provider was called in, who did another two attempts before finally placing the needle. 

JEFF WATT

The next day, I got the most agonizing headache of my life.  When I went back to the ER, they found the reason was a spinal fluid leak caused by all the failed attempts to collect spinal fluid.

The treatment for spinal headaches is to do an epidural blood patch, which includes another spinal puncture.  The first blood patch was placed in the wrong place, so the headache returned.  It took a second blood patch, and then ANOTHER spinal puncture to have it placed correctly and to make the headache go away.

Shortly after, I started experiencing sharp shooting pains down my right leg, causing extreme constant pain and causing me to collapse, unable to bear my own weight. 

I returned to the ER and they sent me to see a neurologist, who did an MRI and a number of other tests, in the end diagnosing me with a condition called arachnoiditis.  This is a progressive disease caused by scar tissue in the arachnoid space of the spinal cord clumping together and pinching the nerves, 24/7.  Arachnoiditis is progressive, a condition that only worsens and is incurable.  It has been described as pain as bad as that of cancer, but without the release of death.

Over the last 3 years since my injury, I have lost my job, friendships, and the ability to do sports and activities with my wife.  I have experienced increased shooting pains and weakness in my right leg, loss of bladder and bowel function causing me to wear adult briefs, balance issues, sexual dysfunction issues, and the list goes on.

Numerous specialists couldn’t provide a treatment to alleviate my pain.  I tried medication after medication with the same result -- until I was prescribed extended relief morphine and oxycodone.  These medications controlled my pain enough that I was able to get out to do events, to help out at home doing laundry and dishes, and gave me back a quality of life that I didn’t have.

In the last 6 months, I have been forced to completely taper off of these medications because of a set of guidelines released by the CDC. 

The so-called opioid “epidemic” has made persistent pain patients like myself collateral damage in the government’s attempts to stop deaths from overdosing.  The CDC even admitted it mistakenly included legal prescription opioids in the same data as overdoses caused by illicit fentanyl from China and other synthetic opioids.

I now spend my days in severe unrelenting pain.  Alternative medications prescribed by my doctor have done nothing.  I feel as though I have been abandoned and betrayed by my doctors, and my government.  My doctor is supposed to help and do no harm, and my government is supposed to do what is in the best interest of the people they represent, including patients who are dependent on opioids to give them a quality of life.

If the government is truly concerned about people’s deaths, perhaps it should look into the increase in suicides by patients who suffer from persistent pain.  We deserve effective and compassionate treatment of our pain.

Jeff Watt lives in Oregon.

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.

Pain Patients Urge FDA to Fix CDC Guideline

By Pat Anson, Editor

Chronic pain patients are losing access to opioid medication, can’t find doctors willing to treat them, and are often treated as addicts, pain sufferers told FDA officials during an emotional public hearing Monday.

The Food and Drug Administration called the meeting to hear from pain patients about “challenges or barriers” they face in accessing treatment. Much of the testimony focused on the Centers for Disease Control and Prevention's 2016 prescribing guideline, which discourages opioids from being prescribed for chronic pain and has been widely adopted throughout the U.S. healthcare system.

“FDA, we are begging you. Correct the CDC’s egregious mistakes. Tell the country the truth about prescription opioids. They are safe and effective for 99% of us,” said Rose Bigham, who lives with chronic pain caused by Ankylosing Spondylitis, fibromyalgia and Crohn’s disease. “My new worst nightmare is being admitted to the hospital, being in agony and being denied pain relief.”

“CDC Guidelines have been a disaster for pain patients,” Rick Martin, a pharmacist disabled by chronic back pain, said in prepared testimony. “There is plenty of anecdotal evidence showing involuntary (opioid) tapering is rampant across the U.S.  Many, many stories of patients who are inhumanely suffering, some with suicidal ideation.

“The FDA needs to take action.  The FDA says it wants to know about challenges or barriers to accessing treatment. The challenge and the barrier is the CDC guideline. It should be immediately suspended.  It should be reviewed and modified with pain management physicians and patient input.”

“It seems to me we are asking for our right to have a normal life. I don’t feel like we should have to beg others for our right to live. It is not by another person’s hand to dictate how my life goes,” another pain sufferer said.

Dozens of pain patients and advocates attended the day-long hearing in Silver Springs, MD, including many who came from out-of-state at their own expense. Some fought back tears as they testified. Hundreds more watched the meeting online.

Many patients said they had tried non-opioid medications or alternative pain therapies, and found them ineffective or had side effects. One woman who took the FDA-approved medication Lyrica said it made her suicidal.

“I am a three-time suicide survivor because of medications you guys approve... and I have actually given up on FDA approved medications. I only take herbs in raw forms. Every one of those drugs that you approved for me to take led me to almost die,” said Kelly Devine. “Stop controlling everything any person wants to use to treat whatever form of whatever disease they are dealing with. Let people have the choice of what we put in our body."

“I don’t know if you are aware, but pain patients are being extorted into having dangerous invasive procedures," another patient warned. "It’s happening all over the country. Pain doctors are saying, ‘You want your meds, you have to go have an ESI (epidural steroid injection).’ Extorting patients into having procedures just to get meds is not right.”

‘Too Many Prescriptions for Opioids’

The FDA’s public hearing was a hopeful sign that at least one federal agency is starting to listen to patients about the worsening quality of pain care in the U.S. 

President Trump’s opioid commission held five public hearings in 2017 without ever inviting a pain patient to testify.  The CDC also ignored the pain community when it secretly drafted its opioid guideline, relying instead on the advice of addiction treatment specialists, anti-opioid activists and academics. And the DEA ignored warnings from patients that further cuts in opioid production quotas could lead to shortages of pain medication, which are now occuring at many hospitals.

Will the FDA seek changes in the CDC guideline? The early indications are not promising.

“Unfortunately, the fact remains that there are still too many prescriptions being written for opioids,” FDA commissioner Scott Gottlieb, MD, said in a lengthy statement apparently written before the hearing began.  “We don’t want to perpetuate practices that led to the misuse of these drugs, and the addiction crisis. At the same time, we don’t want to act in ways that are poorly targeted, and end up disadvantaging legitimate patients.”

Gottlieb said the FDA was encouraging medical professional societies to develop their own opioid guidelines for different medical conditions. But he stopped short of calling for changes in the CDC guideline itself, saying it provides "helpful guidance to prescribers.”

“The CDC guidelines reinforce the need to treat pain carefully and adopt opioids as a last resort medication for most conditions,” said Gottlieb, who did not attend the hearing but will be briefed on it, according to FDA staff.

Australian Study Finds Cannabis Does Little for Pain

By Roger Chriss, PNN Columnist

A controversial study recently published in The Lancet Public Health followed over 1,500 Australian adults with chronic non-cancer pain for four years – one of the longest studies of its kind. All used prescription opioids and about half tried using cannabis for pain, some occasionally and others daily or near daily.

Advocates of medical marijuana as a treatment for pain may be surprised by the findings.

In the Pain and Opioids IN Treatment (POINT) study, Gabrielle Campbell, PhD, and colleagues at the University of New South Wales found "no evidence that cannabis use improved patient outcomes.”

"At each assessment, participants who were using cannabis reported greater pain and anxiety, were coping less well with their pain, and reported that pain was interfering more in their life, compared to those not using cannabis," said Campbell, who was lead author of the study. "There was no clear evidence that cannabis led to reduced pain severity or pain interference or led participants to reduce their opioid use or dose."

These findings are not unique. Campbell was co-author of a recent review in the journal Pain that found that “evidence for effectiveness of cannabinoids in chronic non-cancer pain is limited.”  Cochrane reviews came to similar conclusions about cannabis for treating fibromyalgia and neuropathic pain.

In short, cannabis helps, but maybe not that much.

The POINT study would seem to contradict the 2017 National Academies of Sciences (NAS) report, which found “substantial evidence” that cannabis is an effective treatment for chronic pain, but in only five good-to-fair quality studies. Overall, the NAS report found that “cannabinoids demonstrate a modest effect on pain.”

About a third of the cannabis users in the POINT study reported reduced opioid use, but the prescription data showed that there was actually no difference.

The study also found that most cannabis users believed they were benefiting from cannabis, but there was no objective improvement in their pain scores.

“It is really difficult to disentangle the reasons for this,” Campbell told Cosmos. “One hypothesis is that it may improve sleep and subjective well-being.”

This is consistent with other findings that cannabis doesn’t reduce pain, but helps people feel better. The book “A New Leaf: The End of Cannabis Prohibition” states that “patients often say that cannabis mostly disassociates them from the pain, like it’s placed in another room instead of eliminated.”

Similar results were obtained in an Oxford study, which found that “an oral tablet of THC, the psychoactive ingredient in cannabis, tended to make the experience of pain more bearable, rather than actually reduce the intensity of the pain.”

Masking pain may seem like a good thing. But as Grant Brenner, MD, points out in Psychology Today, believing that there is a benefit when there isn't one is problematic. Making pain more bearable may improve mood and sleep, but it could also lead patients to underestimate the significance of a serious health issue. This problem applies to many forms of pain management and requires further research.

“The illusion that a drug is helping with a condition when it is not can get in the way of seeking effective treatment and obtaining real relief,” said Brenner. “Rather than helping with actual pain, difficulty from pain, and need for opioid medication, cannabis consumption may lead people to believe they are improving when in reality they are not.”

The POINT study found what many other studies have been finding about cannabis and chronic pain: Some people experience some benefits some of the time. But the study also has limitations. Participants had chronic pain severe enough to merit opioid therapy, so they may not be representative of people with chronic conditions in general. They also only had access to illicit cannabis that was not part of structured pain management program.

Still, as an editorial in The Age points out: "The findings do not mean medical cannabis does not merit a place in the treatment of various other ailments."

Cannabis and cannabis-derived pharmaceuticals like Epidiolex are proving useful for managing seizures, reducing chemotherapy side effects, and treating multiple sclerosis. There may yet be other uses to be discovered. For instance, cannabis may be effective for more rare disorders. And cannabis may be a viable add-on therapy or alternative for people who cannot tolerate or do not do well with conventional therapies.

The POINT study shows that cannabis is not a panacea for pain. Instead, cannabis is a drug, and we have to treat it with the respect we give any drug if we're going to learn how to use it effectively.

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.

A Pained Life: Being Your Own Advocate

By Carol Levy, PNN Columnist

I was reading an article about a woman with cancer.  She tells how harrowing a journey it has been and all she has been through.

To help herself and her doctors, she carries to each appointment a thick medical file with all her information: doctors notes, tests results, surgeries, treatments, procedures, medications and the outcomes of them all.

“Doctors see this and they respect me,” she says. “I've learned that you have to be super organized. You have to be your own advocate.”

Good for her.

When I see a new doctor, I hand the nurse or doctor a two page printout that details my medical history. It includes all of the illnesses and procedures I have had that warrant noting (using their correct medical names), outcomes for the surgeries related to my trigeminal neuralgia, and all the medications I have tried.

I am at a new doctors' office. The nurse comes out to greet me and I hand her my printout. She takes a quick look. “Who wrote this for you?” she asks.

“I did.” Who else would have written it?

She gives me a look that says, “Yeah sure.”

I recently saw a new pain specialist. He is a psychiatrist by training, but mainly sees patients to treat their pain, not as a therapist.

During our conversation I remark, “I think the pain is oculomotor,” referring to the third cranial nerve. I never think twice about using correct medical and anatomical terms when talking with a medical person. It gives us a common language.

And yet many doctors don't seem to like it. They ask, almost confrontationally: “Why do you talk like that?”

The psychiatrist’s training (I assume) made him more circumspect. “What is your background?” he asked. “You are very familiar with medical terminology and use it easily.”

He was the first doctor to ever ask it in that manner, the only one to ask anything about my background.

Had they asked, as he did, they would have learned I worked in hospitals for years as a candy striper and ER ward clerk. In those days I had pretensions towards medical school. The hospital where I worked was a teaching hospital and many of the residents loved to teach me, even allowing me to observe surgery. It would have been hard not to pick up the lingo.

So what is the difference? Why do doctors and nurses warmly welcome the information the cancer patient tenders via her thick file, while I am looked at askance?

And it is not just me. Time and again I hear from other pain patients or read in online support groups that a doctor or nurse wanted to know why a patient knew so much about their disorder and why they can speak intelligently about it.

I know why.  I think most of us do.  Because we are not children. We want to be seen and heard, to be partners in our medical care. We need to help the medical community understand: Ignorance is not bliss. And knowledge doesn't make us suspect.

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.

Remembering Pain Warrior Sherri Little

By Tina Petrova, Guest Columnist

July 7, 2018 marks the third anniversary of the death of Sherri Little, a California pain patient, warrior, advocate and my friend.

Sherri was a pretty, diminutive woman with sparkling eyes who was full of life, verve and laughter -- until multiple chronic pain conditions claimed her emaciated body and tired spirit at the age of 53.

Sherri committed suicide in a Los Angeles hotel room after a last desperate attempt to get medical treatment for her severe colitis pain (See “Sherri’s Story: A Final Plea for Help”).

I would like to say that insurers, hospitals and medical professionals have evolved in their capacity to diagnose and treat chronic pain and illness since Sherri’s death. Sadly, that is not the case.

Since Sherri’s passing and the slow death of compassion in pain medicine in North America, many others have succumbed to the ravages of chronic pain. Some by failure to be helped, some by their own hand.

When will this madness end? When will doctors stop being persecuted for upholding their Hippocratic Oath by offering patients some small dignity and reduced suffering?

SHERRI LITTLE

When will pain patients gain access to the alternative health modalities that their doctors recommend? When will insurers start to pay for them and governments mandate their coverage?

Pain Warriors

As a longtime pain patient and activist, I was moved to do something for Sherri, myself and others who live in pain. After 3 long years of developing a documentary on chronic pain that was to be called "Pandemic of Denial,” I partnered with award winning filmmaker Eugene Weis.

VISIONARY MEDIA

Together, we have synthesized hundreds of hours of research, production, interviews and footage -- molding our project into a compelling, heartbreaking and status-quo shattering feature film.

The newly renamed documentary “Pain Warriors” is dedicated to Sherri and all those we've lost to pain over the last three years. We are at long last nearing the finish line and anticipate a Fall 2018 release of the film.

Pain Warriors will be distributed by Indie Can Entertainment and we hope it will be available on many platforms of exhibition, including streaming channels, film festivals, cable TV and community screenings.

No one was able to stop Sherri’s tragic ending to the disease of chronic pain. We must now look to the future with commitment, focus and clarity, and renew our ambitions to educate and inform the global community about this seemingly benign illness.  Poorly treated pain and medical neglect are not often discussed in the media, yet they have torn apart many families, shattering lives and communities in their wake.

If your group, organization or support circle would like to sponsor a community screening of Pain Warriors in your city or you simply wish to be notified of future screenings in your area, please email us at: painwarriorsmovie@gmail.com. We will get back to everyone on the screening list by email this fall.

Please visit our website for details on the film. You can also follow us on Facebook by clicking here. And you can learn more about Sherri here.  Help us help you Give Pain A Voice!

Tina Petrova is an award-winning filmmaker and co-founder of Chronic Pain TV and Give Pain A Voice.  Her production company, Visionary Media, is the Executive Producer of Pain Warriors.

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, Please Sign My Pain Agreement

By Jennifer Hochgesang, Guest Columnist

Doctor, I have a pain condition. It cannot be measured or quantified. You have to rely on me - the person living in my body every day for my entire life - as an indicator of how I am doing and how the treatments and medications are working. I may not respond in ways you think I should.

If it was simply blood pressure, you could take it and judge where I am on your own. Unfortunately for both of us, my condition is not that simple. A rapid pulse and high blood pressure is an indication for me that I am in a lot of pain.

I am used to being in pain all day long every day. I have a good mask and I'm especially quiet when in pain. Please, write that down. I am gabbing a lot and feeling okay today, but when I am in great pain – I will be very, very quiet and still. I may even force a smile.

We are tricky creatures, chronic pain patients, and it takes time to understand us individually. You did not pick an easy job.

Do you see where I am going with this? Yes, we need to create a bond. I will share the signs of my body with you. Will you promise to listen? I would like that very much.

At the very least, let’s agree on my pain levels. When you ask me for a number, that number should mean the same thing to both of us. These numbers are very subjective, so let me help you.

A number 3 means that I feel discomfort, but I can get on with my day and even preoccupy myself with other things. A number 7 means I am barely able to talk because that is a trigger for my facial pain from trigeminal neuralgia. When that happens, I use sign language to communicate with my daughter.

If I give a number 10, I will be in the ER and will need the doctors there to listen to me because I know the only medication that will stop the flare. I have only reached 10 three times in my life, so you will need to know what it means when I have it. I won’t be able to talk. I’ve found that IV Dilantin is the best thing for my worst flares, but I’ve had doctors unwilling to give it.

If I’m at number 11, I will be unconscious and talking to a dream doctor so I will trust you have that part covered.

Like I said, you did not pick an easy job. But, neither did I. Please don’t forget that I did not choose this. Our appointments go by so quickly and sometimes there’s isn’t enough time to ask questions. I need a little extra time to talk about side effects or a possible procedure. Can we make sure that’s possible?

You will need to get to know me. I have trigeminal neuralgia and multiple sclerosis. I am a mother with a beautiful, wonderful, kind, smart and silly 7-year old daughter.

I am disabled by pain 24/7, but want to work with you to change that so I can care for my daughter and play with her; so I can call my friends and clean my basement; so I can do my four-month old bills; and wake up and actually smile genuinely and fearlessly one day.

I promise I will sign your pain contract and follow it faithfully, but you need to sign mine as well.

Jennifer Hochgesang lives in Illinois. Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

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.

I Am Not an Addict or a Criminal

By Emily Blankenship, Guest Columnist

I was healthy and rarely even took an aspirin until a bad car accident when I was 33 years old. I am now 60.

I have not had one day or moment without pain since the accident, but I’ve had many different doctors. All of them told me they will not prescribe pain meds strong enough to remove the pain completely. They would only give me something to lessen the pain so that I could function.

But I can't function! 

My life since the car accident has been one of horrible physical and emotional pain, lots of doctor visits, depression, and lots of pills. I now have fibromyalgia, diabetes, arthritis, and a long list of other medical conditions. I take 20 different pills and get 2 injections daily. 

I have been practically on my knees, crying and begging doctors for pain relief. I’ve also been in a hospital psych ward 5 or 6 times because I was suicidal. The doctors would still not help me.

They tell me to lose weight, walk for exercise, move more, try yoga, meditate, etc.  All of that is hard to do when you are in so much pain you can't get out of bed! 

I lost my regular life after the accident. Friends disappeared. I could not work. I can no longer do activities that I loved, like bowling, cross stitching and photography, because my hands shake too bad. I am isolated and depressed.

EMILY BLANKENSHIP

My current doctor recently cut down my pain meds from 6 pills a day down to 3 pills. And now I must have my blood drawn for drug tests before the doctor will write a prescription for a refill. Crazy!  I am NOT an addict and NOT a criminal. I just want relief.

My doctor will only write pain med prescriptions for a 28-day supply, even though there are 30 or 31 days in a month. I run out of pain pills the last week of every month. No one should have to live this way. I am also required to have a doctor’s appointment every 2 months to talk about my pain before he will renew my prescriptions.

My experiences have led me to believe that the doctors do not believe chronic pain patients when we tell them we are in pain. Winter is the worst time for me. My pain levels are generally 8 or 9 in winter, even when I’m on pain meds. Summer is my best time, the pain levels can drop to a 3 or 4.

Yet even if I log all my daily pain levels and show it to my doctors, they act like I was just having a bad day.  One doctor actually said that to my face! 

My last three doctors made me sign a pain contract stating that if I ever go to another doctor and try to get pain meds that I will be dropped as a patient.  Scary thought. I have never done anything like that and have no intention of doing that, but the fact I had to sign a contract made me feel like a criminal or an addict.

I am in control of my actions. I am not an addict who will do anything for pills.

Emily Blankenship lives in Oregon.

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.

Lyrica and Neurontin Ineffective for Low Back Pain

By Pat Anson, Editor

Lyrica, Neurontin and other anti-convulsant drugs are ineffective for treating low back pain and may even be harmful to patients, according to a new study published in the Canadian Medical Association Journal.

Prescriptions for anti-convulsant drugs have soared in recent years, as doctors seek “safer” alternatives to opioid pain medication.  Lyrica (pregabalin) and Neurontin (gabapentin) belong to a class of anti-convulsant nerve medications known as gabapentinoids. They are primarily used for treating nerve pain and fibromyalgia, but are increasingly being prescribed off-label to treat lower back and neck pain.

Australian researchers reviewed 9 placebo-controlled randomized trials and found high quality evidence that gabapentinoids did not reduce back pain or disability and often had side effects such as drowsiness, dizziness and nausea.

“The take-home message is that anti-convulsants are not effective and can lead to adverse effects in people with low back pain and radiating leg pain (eg, sciatica), so they should not be recommended to this patient population,” lead author Oliver Enke, MD, a researcher at the University of Sydney Medical School, told Helio Family Medicine.

Low back pain is the world’s leading cause of disability. Guidelines for treating low back pain usually recommend physical therapy, exercise and non-opioid pain relievers rather than stronger analgesics such as opioids or anti-convulsants.

A 2017 study published in PLOS Medicine also warned that pregabalin and gabapentin were ineffective for low back pain and have a “significant risk of adverse effects.” 

PNN readers often complain about side effects from Lyrica and Neurontin.

“I have used both medicines and neither help with lower back pain for me,” said Sheri. “I will say the mental confusion and memory loss on Lyrica is very real, but it takes a slight edge of pain away in my body as a whole from the fibromyalgia.”

“I can vouch that Lyrica does not help with back pain,” said Debra. “It helped with the nerve pain but I thought I was literally losing my mind. I couldn't remember simple words or synonyms for words.”

“I've been taking gabapentin for almost six months; it has helped my peripheral neuropathy, but I still suffer every day from arthritis in every joint of my body, including my lower back,” another reader wrote.

Lyrica and Neurontin are both made by Pfizer and are two of the company’s top selling drugs, generating billions of dollars in sales annually. Lyrica is approved by the FDA to treat diabetic nerve pain, fibromyalgia, post-herpetic neuralgia caused by shingles, and spinal cord injuries.

Neurontin is approved by the FDA to treat epilepsy and neuropathic pain caused by shingles, but is also widely prescribed off-label to treat depression, ADHD, migraine, fibromyalgia and bipolar disorder. According to one estimate, over 90% of Neurontin sales are for off-label uses. About 68 million prescriptions were written for gabapentin in the U.S. last year, compared to 44 million in in 2013.

There have been increasing reports of gabapentinoids being abused by drug addicts, who have learned they can use the medications to heighten the high from heroin, marijuana, cocaine and other substances. Gabapentin is not currently scheduled as a controlled substance by the DEA, while pregabalin is classified as a Schedule V controlled substance, meaning it has a low potential for addiction and abuse.  

OxyContin, Heroin and the Opioid Crisis

By Roger Chriss, PNN Columnist

The roles of heroin and OxyContin in the opioid crisis are frequently mischaracterized and misunderstood. Such is the case with a recent op/ed in The Washington Post.

“In the 1990s, when the industry began aggressively marketing prescription opioids such as OxyContin, heroin was a minimal presence in American life," wrote Keith Humphreys, PhD, a professor of psychiatry at Stanford University

This is an unfortunate and common error about the role of heroin in the opioid crisis. Humphreys is repeating what many politicians and policymakers have also claimed. It’s important to correct this error because otherwise we will misunderstand how to treat heroin addiction, what our options are for pain management, and how to create sound policies to address the opioid crisis.

In fact, the U.S. has long had a major problem with heroin. Mexican black tar heroin arrived decades before OxyContin, and opioid addiction is usually a result of recreational use starting during adolescence, with addiction due to medical care being uncommon.

According to the book “Dark Paradise” by historian David Courtwright, researchers estimated the number of heroin addicts in the U.S. during the 1990s at a half million or more, about the same level as in the mid-1970s. This is also close to the 626,000 heroin addicts that the National Institute of Drug Abuse estimates for 2016.

Fatal overdoses involving Mexican black tar heroin were increasing even before OxyContin was introduced by Purdue Pharma in 1996. Sam Quinones notes in “Dreamland” that Oregon’s Multnomah County had only 10 heroin overdose deaths in 1991, about the time Mexican drug dealers arrived in Portland, but by 1999 there were 111 heroin overdoses.

So the idea that “heroin was a minimal presence in American life” isn’t supported by data. Neither is the claim that heroin traffickers “set up shop in the areas of the United States with the highest prevalence of prescription opioid addiction.”

According to Quinones, the Mexican drug gang the “Xalisco Boys” went into communities that were not a part of the established drug trade and were not subject to turf wars or other forms of gang violence. They wanted to fly below the radar, to avoid detection by law enforcement, and deliberately avoided carrying guns, driving fancy cars, or living large.
So the Xalisco Boys went to smaller cities like Portland and rural communities like Appalachia that were specifically chosen because they were low risk. And they were there well before 1996 and the advent of OxyContin.

Humphreys makes an additional error with his claim that about 80 percent of Americans who became heroin addicts started out with prescription opioids, according to an assessment from the National Institutes of Health. The 80% statistic varies significantly with time and place. As I wrote in a previous column,  non-medical use of opioid medication was found in 50% of young adult heroin users in Ohio, in 86% of heroin users in New York and Los Angeles, and in 40%, 39%, and 70% of heroin users in San Diego, Seattle, and New York respectively.

It's also important to note that “prescription opioids” does not necessarily mean prescribed opioids. Many addicts don't have a prescription and steal, buy or borrow pain medication. The National Institute on Drug Abuse estimates that about 10 percent of patients legally prescribed opioids develop an opioid use disorder. And only about 5 percent of those who misuse their medication transition to heroin.

There is also a disturbing new trend in heroin use. A study in JAMA Psychiatry last year found that about one-third of heroin users had no prior experience with any opioid, prescription or otherwise. Heroin users often have extensive prior drug use with a variety of different substances, along with a history of severe childhood trauma or mental illness.

Humphreys’ claim that the “heroin-addicted were transfers from prescription opioids” ignores another route on the path to opioid addiction. In “Drug Dealer, MD,” Stanford psychiatrist Anna Lembke says some drug addicts switched from heroin to prescription opioids in the late 1990s and early 2000s because of the increased availability of the latter.

None of this is meant to exonerate OxyContin or Purdue Pharma. Barry Meier’s recent book “Pain Killer” does a good job of explaining the history of the company and why it is the focus of so many lawsuits. Purdue was fined over $600 million for the illegal marketing of OxyContin and important questions about the company’s actions remain to be answered.

Heroin addiction has been a major presence in American life for generations. The current opioid crisis may have been jump-started with prescription drugs, but heroin came long before OxyContin. It is better to view OxyContin as gasoline tossed on a smoldering fire, rather than blame OxyContin for heroin. The crisis is more complicated and pervasive than that.

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.