In Crisis There Is Opportunity

In Crisis There Is Opportunity

I just read Kerry Smith’s story: A Missed Opportunity .

Kerry, hello and welcome. Thank you for writing that story.

How many of our readers could have written that story?

My readers and friends in pain, it is time to speak up.

 

Kurt W.G. Matthies

Kurt W.G. Matthies

Some of you know me as a writer for the National Pain Report. How many of you know my story?

I hid my disease from the world for 25 years for the sake of my career. Opioids are “narcotics” (so is cocaine, surprisingly), and everyone knows that people who use narcotics are of a certain ilk.

Do you know that word, ilk? The word ilk carries a specific negative connotation. So do the people who live with daily intractable pain.

To most Americans, we are of that ilk.

 

We are untreated or under treated at best, and have to rely on medication we neither desire nor enjoy, to do the things in life most people take for granted — wash our clothes, shop for and cook a meal, care for children or parents, or even sleep for more than 2 hours without being awakened by pain.

My training is in computer engineering. I hold degrees in electrical engineering and computer science, but I’m also a writer, and have awards from the Society for Technical Communication. I wrote the MacUser column, Power Programming, in the late 1980s. I’ve been published by other technical journals, and by Microsoft Press.

During the final phase of my career, I worked as an expert consultant for attorneys pursuing patent litigation. When that work stopped, it was not for lack of success or productivity. I helped win every case in which I consulted.

I have a knack for finding cases of software infringement in a haystack of documents, email, the odd design note, computer code, etc., but my strength lies in explaining the complex world of a computer algorithm so that your average jury would understand how it could be stolen.

Today, I try to apply this gift to explain pain, pain management, and related subjects to readers of the National Pain Report.

I was never told why my services were no longer needed — but I suspect that someone in a law firm that extended across half the world and employed over 1,000 attorneys discovered my little secret:

I use “narcotics” on a daily basis. I have done so since the early 1980s.

 

My doctors who write the prescriptions call them opioid analgesics. Most people call them pain pills. I’ve even read that one doctor calls them “Heroin Pills.” But to most Americans, they’re narcotics.

Hell, by then I couldn’t work anyway. My spine disease had progressed to a point where the demands of work could no longer be met — I was done.

So here I sit, writing what I can to support people like me who live with daily pain along with the men and women practitioners who still have the courage to treat us, because they know that they have a moral and ethical obligation to do so.

I’m slow. I’m not as productive as I once was. I can’t hold more than one or two things in my mind anymore, because pain occupies a large portion of my consciousness.

I’m not asking for your sympathy… I’m asking for your cooperation.

 

America needs to know what it’s doing to us. Your friends, family, neighbors, the people with whom you speak every day, all need to know the truth about chronic pain and invisible illness, what we need to function in this world, and how our resources are dwindling.

Without your help, the prescription of opioid analgesics — pain medicine — may be outlawed for the treatment of all chronic conditions.

These fools are even talking about limiting opioids to people who have had major surgery, or have terminal cancers.

Please — become alert to the problems we face.

I’m not asking you to blow your job — we all need to put food on the table and pay our rent.

But do what you can.

Do it for me. Do it for Kerry. Do it for yourself.

Forgive me Nike — Just Do It.

Tell the world how important pain medication is to you, how you don’t get enough anymore, and how unmanageable your life has become — not because you’re addicted — but because you’re consumed by pain that could be treated with adequate opioids using evidence-based medical science.

Thank you.

@kwgmatthies

@NatPainReport

#ChronicPain

#opioids

#opiophobia

#60Minutes

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Authored by: Kurt W.G. Matthies

There are 15 comments for this article
  1. Scott michaels at 1:00 am

    Everybody must erite to60 minutes and tell them your story and demand equal time. Our numbers are mch greater then the,abusers out there. We need to be heardandthey lumped us in with junkies looking for a high. Millions of us will suffer because of a few sddicts that blamed their heroin addiction on pain pills. Ive been on pain meds for 7 years. Never did heroin. I know enough addicts to know nobody started with pills.alcohol and pot are the 1st things people use. When the booze doesnt work anymore they move on. We are looking 4 pain relief. They are looking to escape life by getting loaded. When the pills dont work or they are taken away by the governmrnt, addicts look for heroin, pain patients live in misery until they cant take it anymore. Most of us are too old and in too much pain to walk the cold dark streets for a fix. Could you imagineyour grandparents walking or wheeling thru a gang infestedarea asking for heroin. Sounds like a movie of the week.
    JUST WRITE 60MINUTES PEOPLE AND ASK EVERYBOFY U KNOW TO DO THE SAME. #A MILLION LETTERS TO 60 MINUTES

  2. BL at 8:24 pm

    Mary Asbury, you can go in and talk to the Pharmacy Manager and ask them if they can fill all of your meds when you bring in your prescriptions. Also be sure that the same person is on duty the day that you take your prescription in that you talk to. You can also ask your pain mangement dr is you can amend your pain contract and use another pharmacy if the pharmacy you’ve been using refuses to fill all of your prescriptions BEFORE you to another pharmacy. Many drs are refusing to write prescriptions that exceed the FDA Guidelines for 120 mg Morphine/Morphine Equivelent Daily and many pharmacys are also refusing to fill prescriptions if the exceed the daily limit. There is also a strong possibility that the 120 mg will be reduced to 90 mg in the near future.

    As far as Medicaid goes, many states are making cuts where pain management is concerned due to costs as well as they meds that they will pay for. Some state Medicaid programs pay so little now that it is impossible to find a pain dr that will accept a new patient with Medicaid. And pcp’s usually won’t handle chronic pain patients although they can write prescriptions for them if they chose to. A lot of this is due to politicians in D.C. that want to know what type of disciplinary actions state Medicaid programs have taken against Medicaid Providers that are high prescribers of pain meds and certain other meds. Another aspect is that stats heve shown that those on Medicaid are more likely to abuse illegal drugs as well as legal prescriptions.

    Grassley Probes High-Volume Medicaid Prescribers-
    http://www.medpagetoday.com/PublicHealthPolicy/Medicaid/30857?utm_medium=email&utm_campaign=DailyHeadlines&utm_source=

  3. Holly at 1:00 pm

    I worked 3 jobs, saved, and bought a home for my children and myself in a nice, quiet, small Ohio town. I then worked one full time job and attended college part time as a single Mom. I tended to my home, my yard, my kids, had my family over for Easter and Thanksgiving dinners, took my kids to church, their ball games and practice, bowling, scouts, etc. AND took opioids. For years. I always had them in my cupboard, and took them when I needed them. That was before the incessant scrutiny and automatic suspicion of anyone who says the dreaded “pain” word. Neither my kids nor their friends ever touched them. Ever. Why? Because there was never the incessant FOCUS on them like there is now in the media! I now have much, much worse conditions, no kids around (they and their friends became college educated, joined the military, and are tax-paying, contributing members of society, etc.) and I am now denied…Even.Just.One.Pill. For severe daily pain, for conditions for which there is no cure. Ohio and America is forcing me to suffer for their hysteria and illogical blame game. If I never became addicted by taking them only when necessary for decades, why is it assumed that I am now automatically addicted or drug seeking?! I am now in WORSE, exhausting pain, unable to tend to basic ADLs, and, thanks to being untreated for the past 3 years, I’ve developed high blood pressure! My story, however, does not fit the current agenda vilifying anyone who takes an opiate medication for pain. I, and the millions of my fellow pain patients.certainly don’t appreciate the derogatory names and accusations thrust upon us. We are not “addicts” or “drug seekers”. We are patients. We need and take pain medication; they are not “heroin pills”. We have conditions, not “addictions”. There are about 100 million more Americans like me who deserve respect, consideration, and a seat at the table, not devoured in your zeal for a scape-goat.

  4. Mary Asbury at 6:46 am

    I am just a regular person on narcotic pain killers and I would like to comment on something that has been happening to me recently.
    One of the drug stores that I have been going to for years is refusing to fill one of my pain medicines because they say that I am on on too many controlled substances. I am on three.
    I discussed this with my pain doctor the last time I had an appointment.
    He said that more and more pharmacies are doing that.
    My problem with that is when I signed on to the pain clinic I signed that I would go to one drug store only.
    Well I am afraid that if I get caught going to another drug store and having one prescription filled at one drug store and the others at another drug store that it will red flag me.
    My doctor is aware of what is going on because I told him.
    I just wanted to know if that is something else that we have to worry about.
    I am on Medicaid and every month when I go to get my prescription filled I am on edge until that prescription is filled.
    It is too bad the government had such control over our lives

  5. pam at 4:43 am

    Not sure where my comment went from earlier, but I am furious over this discriminations against legit chronic intractable pain patients. Doctors are turning their backs on us in fear of the DEA. What kind of country are we living in that is intentionally influcting pain and suffering onto the chronically ill!?!? Its like the hitler days only our very own government are the terrorists targeting chronic pain patients, FORCING THEM TO LIVE A LIFE OF AGONY! Ill do whatever I can to help. I am at my breaking point. my email is pammy1965@optonline.net. I really think we need to get to the steps of the white house/congress. Protest loudly and get the dea and our government to back off, Ive contacted multiple tv channels, newspapers, the senators to get my voice/story heard. NOONE IS LISTENING!!!

  6. Pam at 3:06 am

    Thank you for speaking up for the true legit chronic pain sufferers! I too suffer from debilitating conditions that cause me chrinic intractable pain, it will never go away just continue to get worse. .it makes me furious what is being done to us! Ive signed the petition2congress first do no harm page multiple times (please sign it people, just google it) Ive contacted my governor, of which i was told to call someone else, Ive called both my senators Booker & Menendez, spoke to their aides who told me someone would call me back, noone has and i called everyday for ten days now, it goes right to voicemail. I am so sick and tired of the neglect, abuse , mistreatment and discrimination those of us receive because we suffer from chronic pain! The labeling us as addicts, pill seekers is a travesty! I tried everything my body coukd take. Had two failed spinal fusions that left me with severe nerve damage down my legs into my feet, ive had years of physical therapy, epidurals, steriod injections, nerve blocks, all other meds besides opiods, NOTHING WORKED! I finally resorted to opiod therapy and was given a quality of life back. I was on the same dose for years with success, never painfree, but my pain was managed and i got thru the day. Until last March when my dr cut my doses back to ineffective ones that leave me in agony. He has given me scripts for all kinds of crap that dont work. Im on perm. disability, a single mom, I dont have money to waste. Two weeks ago I pleaded with my dr to please put me back on the dose that worked, that I am physically, emotionally and mentally exhausted. I told him if he cant do four times a day, i would try three. For the first time in three years of being with him he made me feel like something I AM NOT! He said that i was bargainng to get the pills, i told him dont you dare make me feel that way when you know i am a legit patient. I really wanted to say FU to him and hit him over the back with a baseball bat.. He then mumbled under his breath something about my conditions dont warrant meds…really!?!? He was very frustrated with me, pounding his keyboard, I told him dont even bother writing scripts for all the other crap that dont work..and i said to. him do you think i enjoy living like this!?!? It is a living hell what the legit patients are being FORCED TO LIVE BY OUR GOVERNMENT AND THE DEA!! My dr did put me on the correct mg of oxycodone but only for three times a day. I am not making it on three times a day. This is inhumane and I cant take it anymore. I really do believe we chronic painers need to take our asses down to the foot of the white house/congress. We need to be heard loud! Obviousky the petition2congress first do no harm is falling on deaf ears and blind eyes. I dont doubt for a second that there are probably some in congress or the DEA, their loved ones, that suffer with chronic pain. I bet they have opiods in their cabinets as these barbaric restrictions dont apply to the terrorists running this country. I feel like ive been dumped in a nazi concentration camp left to die a slow painful death. I use to say i wish my pain on noone. Not anymore! I want each and every one of them in our government/dea/cdc to feel what i feel. .i want them to know what its like to get two hours sleep and awakened by the excrucuating pain, to feel like their back is being run over by a steam truck roller, crushing every inch of their spine, to have their hips scraped along the concrete, to have the electric shock sensations. piercing, burning, down their legs with their knees on fire, the middle of their spine to feel like its being hit with a baseball bat, their brain to feel like its squeezing thru their skull. I beg God to take me every day. This is not living, its existing as i watch the world go on without me, My kids watch their mom cry in agony every day. I am so sick and tired of paying the very high price with my health and life because of the avtions some asshole CHOSE to make! I am not responsible for someone who CHOSE to abuse pills, to drink alcohol or illicit street drugs, and yet I am the one being punished for it, we all are and it needs to stop! HOW IS IT EVEN LEGAL THAT THE SCUM RUNNING THIS COUNTRY CAN DECIDE WHAT IS RIGHT FOR OUR BODIES!?!? I am on board for whatever needs to be done! How many more suicides is it going to take!? But then again, they look at suicides as a drug overdose, another addict, when in reality they were suicides due to inadequate pain care, people being stripped of their meds, taking their quality of life! SHAME THE HELL ON OUR GOVERNMENT FOR INTENTIONALLY FORCING PEOPLE TO SUFFER WHEN THEY SHOULD NOT HAVE TOO! CHRONIC PAIN PATIENTS MATTER AND WE NEED TO STAND UP TO THESE TERRORISTS ! THEY INTENTIONALLY INFLICT HARM, PAIN AND SUFFERING ONTO THE CHRONICALLY ILL! GENOCIDE THRU SUICIDE IS RUNNING LIKE WILDFIRE THRUOUT THIS COUNTRY THANKS TO THE DEA AND OUR GOVERNMENT!!

  7. Jeremy Goodwin, MS, MD at 8:12 pm

    As an ex university medical Center chief of pain medicine in adults and children as well as babies, I am horrified at the POLITICAL angle that drives this Spanish Inquisition-like attack on pain medicine as a field, not to mention the lack of scientific rigor in failing to separate sub populations who die of an overdose. Some are sufferers of persistent, intractable pain; some have deliberately or accidentally taken too much, others have been prescribed too much, yet more are under-treated and desperate, or mixtures of agents have been taken at unsafe doses. Everyone is being lumped together!

    As many die each year of ibuprofen overdose as they do of opioids with or without other agents.

    The movement is embraced by most because paints in chronic pain ARE THE ORPHANS OF MEDICINE. No one really wants to spend the time to validate and to talk, such an important part of CARING as against merely CURING ( or trying to, especially that which may Only be ‘managed’.

    Those who know better are afraid of the vindictive medical boards and lay low. They do themselves and millions of patients harm in their cowardice.

    The 60 minutes and most published reports and symposia are biased and founded on poor science and much bigoted politics and philosophy. It frustrates me no end and I don’t even suffer intractable pain or headache.

    And yes, pain kills! And it does not matter whence it originates. Even emotional pain kills. We must get a grip and find the middle road that eliminates transgressions on both sides, clinicians and patients both, a problem mostly due to poor education and terrible communication that needs to begin and to be honed in medical school and all or nearly all residency programs and fellowships!

  8. Jeremy Goodwin, MS, MD at 7:55 pm

    Hi Kurt,
    I read your article and of course , we have spent hours on the phone discussing the topic and related ones.

    You mentioned cocaine being a narcotic. Please let me clarify.

    Clinicians generally use narcotic as a synonym for natural ( opiate) opium poppy extracts ( such as morphine, opium and codeine, etc.,) while synthetic or semi synthetic ‘opium-like’ derivatives and medications are usually referred to as opioids. This is to avoid the stigma associated with the police term ‘narcotics’ as it pertains to street drugs.

    In some states ANY controlled substance that is legally made by the industrial complex and then marketed as medication, such as Valium aka diazepam, and its relatives, amphetamine and its own extended family of stimulants, along with opioids, etc.,–that now generally includes opiates for the sake of simplicity–are LEGALLY classified as narcotics. In that setting it isn’t really a clinical term.

    In other words, clarify which definition is being used. Pharmacists tend use both definitions because they buy and sell, fill Rx’s and also report sales and inventory to the State.

  9. Tyro at 4:18 pm

    Thank you for speaking up. Far too many people mistake treatment seeking behavior (pseudoaddiction) with true addiction. Without painkillers my baseline pain level is comparable to acute appendicitis or shingles. (I speak from experience.) I am not addicted to my meds, am very careful and always use them responsibly, but live in fear of circumstances beyond my control cutting me off. I would suicide in short order.

  10. Kim Miller at 3:53 pm

    Kurt, I felt like I knew your story already because I have one that resembles it in so many ways. I did not want to leave my job I worked 30 years at attaining. I was in the prime of what I did, but I could no longer think due to the impact of pain. I elected to retire early, and now I’m just miserable in a different place.

    I don’t kid myself, I know I was at a point where I could not handle the stress anymore. When 2012 came and they decided I would do EVEN BETTER if I had no pain medication, I had already been retired for 4 years. It would have been the end for me then if I hadn’t already left.

    Now, every day it seems, “they” are deciding we would all be better off curled up in a ball, shoved over in a corner somewhere, just definitely without those killer pills I’ve been on since the mid nineties. If they’re SO deadly, why am I still here?

    Thank you for all you do for the pain community. I hope you’re doing alright, relatively speaking. We’re all getting older and this atmosphere of sitting on the edge of your seat waiting for your pain relief to disappear is about as stressful as it can be. Second only to the last 2 times they made it disappear, that is.

  11. Kristine at 12:22 pm

    I’m just writing this shorty because I forgot to check the follow-up box, so I’ll do it now.

  12. Kristine at 12:21 pm

    Dear Kurt:
    I thought I was reading about myself for a minute. I am the former owner of a marketing communications agency that specialized in the computer industry, and in the late 80’s I was placing ads in MacUser for my clients and writing articles for many business and computer publications. I was an international award-winning writer and designer, and I was absolutely on fire! But then I began to get sick. Skipping the long story, I am now 62 and have been on “narcotics” for many years. It is due to ME/CFS, RA, Degenerative Disk Disease and undiagnosed Lupus. I have been making comments all over the Internet after articles like yours to encourage our people to do the same – enlighten and educate. We need doctors, pharmacists, patients, writers, editors, producers — you name it — to speak out NOW. I have appointed myself a researcher in this endeavor and have been gathering information for some time. It is hard for me to write a full-sized, accredited article these days (as you know all too well), but I want to be a part of making our community heard. I have some contacts already and hope you will contact me also so that we can, together, all make a difference. I believe I might be able to ask someone like Mickey Kennedy to help us. Thank you for writing this article.

    Kristine
    30yearfreelance@gmail.com

  13. Scott michaels at 9:55 am

    You are in a position to do the most for us. I too suffer daily, i though chose not to have the surgeries due to the many surgeries i would have to endure and the fact that i would still be in terrible pain. I decided to try everything available to me before surgery and i did. The final thing i tried was the opioid pain medicine. Now afet 7 years i am still doing 10 times better then without.
    Please go to facebook and wrtie your stories on CNN AND 60 MINUTES WEBSITES AND ASK ALL YOUR FOLLOWERS TO DO THE SAME SOCIAL MEDIA IS OUR ONLY HOPE FOR PEOPLE TO HEAR US. MAYBE YOU CAN GET THOSE SHOWS TO ALLOW OUR SIDE TO BE HEARD. I HAVE ALREADY DONE THIS TO NOW AVAIL. BUT AS YOU KNOW POLITICIANS WONT FIGHT THE PEOPLE IF WERE IN GREAT NUMBERS.