A Veteran’s Story in His Own Words

Policymakers have changed the way patients who have chronic pain are treated. The 2016 CDC Guideline for Prescribing Opioids for Chronic Pain has had a domino effect on policies throughout the country.

Unfortunately, veterans have been particularly affected. I have heard of many vets being told they no longer would be prescribed opioids or benzodiazepines. The stated reason for the dramatic shift in treatment is because of the number of vets who have developed an opioid use disorder, or overdosed and died from opioids and/or benzos.

However, what has not been recognized by most policymakers is that not treating a vets’ pain can also cause harm.

Kenneth McKenna is one of those vets who have been needlessly hurt by the change in policy. Here is an email Kenneth sent me this week. It has been only slightly edited for clarity. I am sharing it with his permission:

Kenneth McKenna

Kenneth McKenna’s Story

I sit here thinking back on when the rumors starting at my V.A. hospital where I’m both a patient and a volunteer. The first thing that happened out of the blue was my psychiatrist informed me  that I was going to immediately have to start tapering off any and all benzodiazepine medicines I was on. I had been on an anxiety med for PTSD and panic attacks, as well as medication for chronic insomnia. At the time, all I was told it was due to, “A change in policy.” At the time, I didn’t realize the CDC had decided (and maybe rightly so) that anyone on an opiate or opioid med could no longer take benzos at the same time due to the risk of respiratory failure.

 Now, right or wrong, it can be very confusing that it was considered a safe practice for decades.It made me ask myself, “Did they put me at risk all those years,” “Was I really at risk of respiratory failure for 14 years, and they just figured it out,” or “Is this just another bureaucratic snafu that must be followed at any and all cost?”

 I found out about the CDC (so called) guidelines that would forever change the way pain, chronic, acute, or even post op would be treated. I was told, because the CDC is the federal government, the VA has to accept the guidelines as rules to be strictly adhered to. And sitting here today, I am truly shocked at some of the barbaric displays of pain treatment and the lack thereof I’ve witnessed. I hear from other veterans (in-patient and out) about how they have had to learn to suffer through painful days and nights or take the copious amounts of the new go to drug, gabapentin. I have personal experience with gabapentin and can attest to the fact that it steals your memory and puts one in a “who-gives-a-damn” fog. Have we got to the point where it’s safer to use a seizure drug off-label to make zombies out of us to treat pain? Most people in pain just want to have a life where they can function as a contributing member of society like everyone else.

 When the talk began of all physicians cutting back on opioid meds or, in some cases, just stopping them, many people panicked. On a dark night, my best friend slipped out of the mobile home he and his mom shared (so he wouldn’t wake her or create a mess), put his 38-caliber pistol to his chest, and ended the beating of one of the kindest and most beautiful hearts I’ve ever known. His name was John or, as we called him, Jay. He had cancer at 15 years old and lost his arm. Back then, chemo was much more brutal than it is now. As the years went on, they had to remove his shoulder. He suffered from all kinds of pain, the worst of which was phantom limb pain which his doctors had no idea how to treat. When he heard about the CDC cracking down and realized that he was facing a life of pain that, at times, was already out of control, he made the decision to check out before it negatively impacted his life even more. John was the type of guy to stop and help a stranded motorist, a homeless person, or give back to life in anyway he could. He was warm, loving, and empathetic. He loved kids and animals, and was a valued family member. To say he’s missed doesn’t come close to describing the empty spot that lives in my heart and which will never be filled again.

 Fast forward to now, and I’m seeing first-hand another injustice coming to pass. I have a 79-year-old veteran I help take care of, as he has no family. About eight years ago, he underwent radical cancer surgery, chemo, and massive radiation on his neck. He has pain that is no doubt a lingering side effect of all the treatment — not to mention, at 79 years old, the body can rebel with aches and pains of its own making. I watch him try to function daily, and it’s an effort I don’t know if I’d have the courage and tenacity to endure. He has no appetite due to the radiation, has difficulty swallowing, needs a stomach tube to get added nutrition.

 When he asked for something for pain, he was told to take Tylenol. When he said it wasn’t working, he was put on 1600 mg of gabapentin. That’s when he loses himself and whatever cognitive function he has disappears. When he complains about the side effects of gabapentin, they say to taper slowly down. He gets extremely blurred vision, Parkinson’s-like twitches and body jerks, and general brain fog. I know it’s a risk factor to give opioids to an elderly person who might fall, but gabapentin is a bad substitute. All this man wants is a fair shake at living his remaining years without daily debilitating pain. For the record, he’s not a whiner and can take a fair amount of discomfort. We were in the VA emergency room Saturday as his stomach tube came out. As the ER nurse and physician tried to find the right size tube to insert, he became the guinea pig. Tube in, tube out. Wrong size; let’s try another. His discomfort was obviously elevated. When he asked if they could give him something for the pain, the all-too-common answer came back, “Oh, we don’t like to do that anymore, but I’ll check into it”. No answer, one way or the other, came back.

 The way pain is treated today is that anyone who complains of pain is treated like a leper. If I needed a surgical procedure, I’d be very reluctant as I’ve heard of very frightening experiences of the way post OP pain is treated now.

 “Just say no” didn’t work. This convoluted “Opioid War” is not working. I saw a television show where a heroin dealer reveling in how good sales were said, “Thanks, CDC and AMA.”

 The United States has virtually thrown gas on a fire, creating a worse heroin and fentanyl problem than we’ve ever had. If I live to an age where I have to suffer in pain and no effective treatment is available, I already know what choices are available to me.

 Let Your Voice Be Heard

I am sure that there are many veterans and non-veterans with similar stories. I wanted to share Kenneth’s story to encourage others to tell their story as well. Storytelling, not statistics, will be the only way to influence change.

 

 

5 Comments

  1. David James on February 2, 2020 at 1:36 am

    These crimes against pain sufferers are ALL right out of the “1692 Salem Massachusetts Manual of Pseudo-Puritanism and Witch Burning, Revised 2020”.

  2. Allison on February 4, 2020 at 8:59 pm

    Try and tell your story to Donald Trump who started this whole FAKE Epidemic . War on Drug’s.. !! And has NO Conscience or Empathy towards all those that Suffer with Pain.. He sent me a Letter because I have been Emailing the White House Daily. Then filled a ” Consensus ” on line.. and when it got to the OPIIOD CRISIS Part.. I let him have it. He think’s that you can go into the Hospital and become Addicted when prescribed opioids. He also Naively ” Believes that Doctor’s over Prescribing started this whole Crisis.. There might me some vitality but it’s NOT how this started. DEA has totally Deceived this President. This OPIOID Crisis is out of Control. Need’s to STOP !!

  3. Sue Enders on February 5, 2020 at 7:50 am

    The president and powers that be, cannot be so uninformed and naive to actually believe the propaganda they spew. Especially since it has been determined that most of their narrative is false and there have been plenty of articles about this failed “war on people” Oops, I mean “war on drugs”. Chronic pain patients are not now, and have NEVER been the problem. Street drugs are. Check out articles from Dr Josh Bloom @ACSH or Dr Red Lawhern; Face Facts for the truth. But it’s far easier to deceive the general public by having the DEA going after Dr’s and punishing patients, rather than dealing with the Sinaloan cartel or the Chinese Mafia that are responsible for most of the street drugs that are what younger people are STILL overdosing on in large numbers. I had 2 neighbors a few weeks ago who overdosed a total of 3 times with heroin and meth, and possibly illicit fentanyl. I keep Narcan for just such occasions and have already saved a few lives. Overwhelmingly, younger people are the ones overdosing on street drugs and older people in pain are being denied humane treatment because of it. Many of us have never failed a urine test and never overdosed or misused out pain meds. It’s like saying no one can drive because some people drive drunk. They tell us to take Tylenol or ibuprofen which is ludicrous and even hospitals are denying people proper pain relief.
    C’mon, the president of the US is possibly the most “informed” man on the planet with all his advisors and staff. Not to mention that he has probably recieved thousands (if not more) of emails about how badly the chronic pain community has been treated from so many chronic pain patients who are suffering, (well un- and under-treated to be factuaI). I don’t buy that he is misinformed or uninformed. This is a deliberate thing they are doing and as far as I’m concerned, this is a crime against humanity and every suicide leaves more blood on the hands of the tyrants making these primitive, ineffective, dangerous and draconian policies. We KNOW that prohibition does NOT work and just makes the problem worse. Far worse. It appears they didn’t learn from alcohol prohibition 100 years ago. Speaking of alcohol, about 88,000 people die a year from alcohol related deaths and in 2017, 47,600 people died from opioid related drugs, 3/4 of those deaths were from street drugs, NOT prescribed pain meds. Why isn’t there an “alcohol crisis” or an “alcohol epidemic” ??? This is easily found information, no the president is not misinformed. Since opioids have largely been taken out of circulation, meth use and abuse has skyrocketed and people are dying because of it. What our president SHOULD do is read about what Portugal has done to drastically curtail their overdose deaths. They practice harm reduction which has made a huge difference in their country. It is far past time to stop the genocide of innocent Americans who are suffering and dying for something they didn’t ask for and cannot help. We are NOT responsible for the street drug problem and shouldn’t be made to pay for it. None of us asked for our diseases, injuries, illnesses or accidents that caused us to have daily, never-ending pain. It was already hard to keep on top of and keep up with our activities of daily living (which our pain meds greatly helped with and gave us quality to our lives) we now have to somehow try to function with pain that most people will never know. Without adequate pain meds, many of us are left bedridden and unable to do anything we don’t absolutely have to do to survive. What kind of life is it, when you cannot even participate in your own life ????
    I hope the president and powers that be realize, that they are one bad accident, illness or injury away from having chronic pain they didn’t ask for. The number of pain patients who have ended their own lives to stop the suffering is already in the thousands. How many more have to die before it matters to someone ???????????

  4. Brad on February 8, 2020 at 8:41 am

    I intended to comment on the author’s remarks days ago. They are both horribly tragic and regrettably mundane. If the author or events he’s witnessed were unique presumably, there’d be media attention and legislation rushed through congress placing an emphasis on pain reduction as long as necessary, whereby every individual is treated as uniquely as the individual, discovery and resolution of causal events.Unfortunately, those underlying causes consistently have woefully hopeless research & exhaustive recording and redress.
    Unfortunate, these farcical statistical analysis performed by the new, added bureaucratic layer to medication dosing to include the CDC notably doctors who remain nameless but served to put the smack down on patients who didn’t comply(?) even if faulty testing, i.e. U.A. false-positives/negatives, clinicians w/o knowledge to comprehend results of such findings.
    I was surprised based on my physicians’ initial angry reaction to these guidelines and how quickly all parties in chain of custody fell properly into line w/initial CDC opioid… guidelines. Literally a week and it never stops. With each PM apt., there is an additional hoop in addition to cumulative ones I must jump through to get some pain medicine.
    It is obvious there is much wrong, having to do with one of those oldest of sins… greed. The provider falls in line, thus much less work or responsibility is on their shoulders. Oddly, far more delegation but the bottom line is protecting the practice against the near impossible lawsuit by a patient. I actually had a provider think nothing of it, when s/he came to realize a medication I’d been prescribed in 3 month fills for a decade, 3 yrs by the doctor in question it was felt my dose was too high. It wasn’t but the doctors comment gave me a clear indication of the line drawn in the sand. The hypothetical put to me was, “Could you imagine what would happen to the practice if you died from this dose?” Believe it or not I was stunned.
    Very quickly, I had a horrific hip injury at age 14, plagued w/deformity/weakness, etc. I saw MD’s who took x-rays, scratched their heads and walked away 4x until age 18. From 18-36yrs old, I had ~ 10 knee surgeries, mostly torn cartilage caused by… sitting down. Then low back, pelvic and hip. All these I learned to address largely on my own, I hated prescription medicine and seldom took it.
    During this same period 18-36, I had a profound spiritual change and found great joy in helping anybody in any circumstance. I had become a proficient street fighter, exceptional boxer, was very strong yet was granted a gentle and compassionate spirit no matter the cost to me. The salad years.
    I received an undergraduate degree and got a job performing pharma R&D. On average, I performed my experiment, my data was peer reviewed, QA reviewed, frequently twice, the client QA reviewed it and about 50% of time the FDA did so as well, calling me in for questions while they reviewed. Once, I got into a bit of trouble. I filed a form for non-compliance/out of spec result. The client didn’t like this and demanded I merely write something up that diminishes the failed results. I declined kindly stating I was required to follow my company’s SOPs not the client preferences. Soon enough, I found out this had occurred time and again and I was unique in sticking to my guns. Interestingly, my own manager, stealthily sought to throw me under the bus but this was averted.
    I write the previous paragraph, b/c one has to keep an open mind and heart seeking not to let financial considerations outweigh all others. Over the past 4-6 yrs., there has become a veritable echo chamber surrounding opioids for chronic pain primarily between years ’99–’12 wherein somebody extracts some raw data, presents it in the most damning perspective possible. Is sure to be published and liked by all but those presenting a realistic or accurate view of whatever is occurring. This isn’t science, it’s not medicine, it’s just wasted resources.
    At 36 yrs old, I had a bunch of bizarre symptoms, beginning and most consistently being sudden onset of a sort of paralysis from tailbone down, then up torso. In addition, sunburn sensation all over right side of face. Intensity was quite severe; duration was from hours to weeks on average.
    Workups consisted of lots of spinal fluid analysis, imaging but sadly very little in the way of my history or relevant exams. I’ve noted doctors examining me. They didn’t know what to do. At best these are activities for the assistant’s assistant never to be seen by those making real decisions. For several years I was placed on a remarkable quantity of medicine including opioids.
    A) It became ever more clear to me alone that the cause had to be found
    B) At one pt. before I began to investigate and subsequently reduce meds from as many as 15 -> ~6 and lower dosages this in and of itself was a quick solution until physicians found it becoming to potentially costly… 97 MME instead of a CDC guideline arbitrarily establishing 90 MME & they hadn’t/haven’t a clue how to establish various long 1/2 life in use for ~ 80 yrs
    C) During 3 extended hospital stays, opioids were blamed for any symptom I stated. When indicating the symptom existed prior to any medication the information has no impact on the running argument.
    D) In 17 yrs not a single failed drug test except when UA testing erred on initial sampling giving a false negative, clinic of 9 yrs merely went with findings. I was made to come in and submit another sample. At this opportunity I sought what had been results of original sample retest. All staff seemed oblivious and no confirmation was given. This is significant b/c each test requires submission of results so if one ends up w/6 samples, all with results of some sort they must be reported. Thus confirming/recording w/fewest repeat sample analysis the easier. Nevertheless, UA failed again in 3:5 UA’s several weeks. Instead of clinicians lining out incorrect data and writing in corrected, signing and dating. In some follow up office notes it was merely mentioned I appear to be taking scripts as described.
    E) 17 yrs of medical records are so error filled, so stacked w/BS, I consider the lot to be useless in assisting in any diagnostic/prognostic value ever.
    F) The patient should absolutely have the right and provider the desire for patient to review notes, add notes, etc. Once, the record is filed, any input by patient is almost useless not to mention frustrating and time consuming.
    G) Shortly after CDC went off mission statement, a bunch of Congressional heavy-hitters paid the director of DEA a visit to insist opioid production be cut. At the same time, it was common knowledge by DEA that all active and otherwise ingredients existed on the black market for manufacture of anyone’s guess at potency from China by way of Mexico. There also existed a plethora of pill presses for mass production of the black market opioids. All above-mentioned parties were substantially more interested in curtailing legit production of such medications than curbed far more dangerous, less controlled black-market sources.
    H) Finally, a word about marijuana for pain, glaucoma, etc. Whatever assists pain reduction ought to be tried within reason. That said, marijuana has long been considered a gateway drug to far more serious, life-threatening drugs. Of the ½ dozen friends I had who used frequently, all moved on to cocaine, acid, etc. and selling the aforementioned. 16, now 52, it is unlikely that most of these people will see the outside of prison not due marijuana but what followed. Marijuana will develop tolerances in individuals just like most other medications. Unless doctors are prepared for this issue generally opioid effects than this or antidepressants, antiseizure meds, etc.
    Over the past 17-18 yrs., I went from very fit, athletic, spiritual, loved people enough to help any I found in need to an extent greater than my ability. Helping others gave me a profound sense of purpose and joy. I was perceptive, confident and humble. I loved people and enjoyed humor at my expense. I was a quick study and others enjoyed being around me. I was blessed to meet my wife in the beginning of the nightmare that has grown so very much worse such that the worst part of any day is waking, presuming I went to sleep at all. Chronic pain is a big deal, a far worse one is the utter naivety of its unique underlying cause.
    I’m certain the “opioid-related overdose deaths” are so dissociative from that of the poor soul being prescribed them from a doctor that either records are being manipulated to give such an impression or statistical analysis is. I’ve read countless places and still it gains no traction how serious are the medical errors, likely 3rd leading cause of death in the country, no crisis, no epidemic, non-existent according to the powers that be. We are one of those groupings of people, “least”/or “simply not politically defensible”.
    Kind regards,

  5. Brad on February 8, 2020 at 8:45 am

    I intended to comment on the author’s remarks days ago. They are both horribly tragic and regrettably mundane. If the author or events he’s witnessed were unique presumably, they’d be tragic and made right straight away. Unfortunately, those suffering due underlying causes that had stunningly, woefully research infested in finding and redress.
    Unfortunate, these farcical statistical analysis performed by the new, added bureaucratic layer to medication dosing to include those especially concerned doctors who remain nameless but served to put the smack down on patients who didn’t comply even if faulty testing, i.e. U.A. false-positives/negatives, clinicians w/o knowledge to comprehend results of such findings.
    I was surprised based on my physicians’ initial angry reaction to these guidelines just how little time it took for all parties in chain of custody to fall properly into line w/initial CDC opioid… guidelines. Literally a week and it never stops. With each PM apt., there is an additional hoop in addition to cumulative ones I must jump through to get some pain medicine.
    It is obvious there is much wrong, having to do with one of those oldest of sins… greed. The provider falls in line, thus much less work or responsibility is on their shoulders. Oddly, far more delegation but the bottom line is protecting the practice against the near impossible lawsuit by a patient. I actually had a provider think nothing of it, when s/he came to realize a medication I’d been prescribed in 3 month fills for a decade, 3 yrs by the doctor in question it was felt my dose was too high. It wasn’t but the doctors comment gave me a clear indication of the line drawn in the sand. They said to me, “Could you imagine what would happen to the practice if you died from this dose?” Believe it or not I was stunned.
    Very quickly, I had a horrific hip injury at age 14, plagued w/deformity/weakness, etc. I saw MD’s who took x-rays, scratched their heads and walked away 4x until age 18. From 18-36yrs old, I had ~ 10 knee surgeries, mostly torn cartilage for… sitting down. Then low back, pelvic and hip. All these I learned to address largely on my own, I hated prescription medicine and seldom took it.
    During this same period 18-36, I had a profound spiritual change and found great joy in helping anybody in any circumstance. I had become a proficient street fighter, exceptional boxer, was very strong yet was granted a gentle and compassionate spirit no matter the cost to me. The salad years.
    I received an undergraduate degree and got a job performing pharma R&D. On average, I performed my experiment, my data was peer reviewed, QA reviewed, frequently twice, the client QA reviewed it and about 50% of time the FDA did so as well, calling me in for questions while they reviewed. Once, I got into a bit of trouble. I filed a form for non-compliance/out of spec result. The client didn’t like this and demanded I merely write something up that diminishes my failed results. I declined kindly stating I was required to follow my company’s SOPs not the client preferences. Soon enough, I found out this had occurred time and again and I was unique in sticking to my guns. Interestingly, my own manager, stealthily sought to throw me under the bus but this was averted.
    I write the previous paragraph, b/c one has to keep an open mind and heart seeking not to let financial considerations trump all. Over the past 4-6 yrs., there has become a veritable echo chamber surrounding opioids for chronic pain wherein somebody extracts some raw data, conclusion already surmised; now it’s merely an exercise in plugging in the raw data or stats to arrive at pre-drawn conclusion. This isn’t science, it’s not medicine, it’s just wasted resources.
    At 36 yrs old, I had a bunch of bizarre symptoms, beginning and most consistently being sudden onset of a sort of paralysis from tailbone down, then up torso. In addition, sunburn sensation all over right side of face. Intensity was quite severe; duration was from hours to weeks on average.
    Workups consisted of lots of spinal fluid analysis, imaging but sadly very little in the way of my history or relevant exams. I’ve noted doctors examining me. They don’t know what to do. At best these are activities for the assistant’s assistant never to be seen by those making real decisions. For several years I was placed on a remarkable amount of medicine including opioids.
    A) It became ever more clear to me alone that the cause had to be found
    B) At one pt. before I began to investigate and subsequently reduce meds from as many as 15 -> ~6 and lower dosages this in and of itself was a quick solution until physicians found it becoming to potentially costly.
    C) During 3 extended hospital stays, opioids were blamed for any symptom I stated. When indicating the symptom existed prior to medication, no effect on counter argument.
    D) In 17 yrs not a single failed drug test except when UA testing erred on initial sampling giving a false negative, clinic of 9 yrs merely went with findings. Same UA failed again in 3:5 UA’s several weeks. Instead of clinicians lining out incorrect data and writing in corrected, signing and dating. In some follow up office notes it was merely mentioned I appear to be taking scripts as described.
    E) 17 yrs of medical records are so error filled, so stacked w/BS, I consider the lot to be useless in assisting in any diagnostic/prognostic value ever.
    F) The patient should absolutely have the right and provider the desire for patient to review notes, add notes, etc. Once, the record is filed, any input by patient is almost useless not to mention frustrating and time consuming.
    G) Shortly after CDC went off mission statement, a bunch of Congressional heavy-hitters paid the director of DEA a visit to insist opioid production be cut. At the same time, it was common knowledge by DEA that all active and otherwise ingredients existed on the black market for manufacture of anyone’s guess at potency from China by way of Mexico. There also existed a plethora of pill presses for mass production of the black market opioids. All above-mentioned parties were substantially more interested in curtailing legit production of such medications than curbed far more dangerous, less controlled black-market sources.
    H) Finally, a word about marijuana for pain, glaucoma, etc. Whatever assists pain reduction ought to be tried within reason. That said, marijuana has long been considered a gateway drug to far more serious, life-threatening drugs. Of the ½ dozen friends I had who used frequently, all moved on to cocaine, acid, etc. and selling the aforementioned. 16, now 52, it is unlikely that most of these people will see the outside of prison not due marijuana but what followed. Marijuana will develop tolerances in individuals just like most other medications. Unless doctors are prepared for this issue generally opioid effects than this or antidepressants, antiseizure meds, etc.
    Over the past 17-18 yrs., I went from very fit, athletic, spiritual, loved people enough to help any I found in need to an extent greater than my ability. Helping others gave me a profound sense of purpose and joy. I was perceptive, confident and humble. I loved people and enjoyed humor at my expense. I was a quick study and others enjoyed being around me. I was blessed to meet my wife in the beginning of the nightmare that has grown so very much worse such that the worst part of any day is waking, presuming I went to sleep at all. Chronic pain is a big deal, a far worse one is the utter naivety of its unique underlying cause.
    I’m certain the “opioid-related overdose deaths” are so dissociative from that of the poor soul being prescribed them from a doctor that either records are being manipulated to give such an impression or statistical analysis is. I’ve read countless places and still it gains no traction how serious are the medical errors, likely 3rd leading cause of death in the country, no crisis, no epidemic, non-existent according to the powers that be. We are one of those groupings of people, “least/or not politically defensible”.
    Kind regards,

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