Pushed Beyond Hope

Warning: This is a very angry essay about how the campaign against opioids could push someone to suicide.

I used to think I was the only one wrestling with these thoughts until I lately discovered other like-minded folks. I wasn’t sure whether to post it, but then I saw a question on the Inspire.com Pain and Pain Management forum about this very idea, and this is my answer:

Pushed Beyond Hope

Over the last few months, the accumulation of forces against opioid prescribing has pushed me over an edge, pushed me past my sense of self-preservation and into a fundamental shift of my expectations of life.  

I’ve come to realize that if the increasingly anti-opioid, anti-pain-relief, and anti-factual campaign succeeds, I will not die of old age. I may get lucky and suffer a fatal accident or disease before then, but if I don’t, I’ll have to take matters into my own hands.

There is simply no way I can live another 20-some years in my deteriorating, increasingly painful body. Opioids have kept me afloat so far, but I can see that the movement to deny these medications to pain patients will eventually claim me as its victim too.  

I’m already broke. I invested most of my savings in an extensive, expensive, decade-long medical search to find the cause of my increasing chronic pain, assuming that my pain could then be cured. Thousands of dollars later, I learned that this would not be the case.

So I followed every lead and tried every non-opioid treatment suggested by any doctor I was seeing. I further drained my savings just to discover that my intractable pain only responds to opioid medication.

I was decimated by this discovery. I do not want to take opioids. I do not want to be dependent upon pills and our broken medical system to save my life.

My pain comes from the known connective tissue defects arising from Ehlers-Danlos Syndrome. Because this is a genetic flaw, there is no possible cure or remedy for the pain from having defective tissues throughout the body.

With this incurable and untreatable diagnosis, I realize my symptoms will only increase as I age. Fortunately, my doctor has been prescribing me opioids to control the inescapable pain and this has allowed me to retain a relatively decent quality of life and functionality.

However, my access to pain relievers is increasingly threatened by the current campaign to restrict opioid use only to cancer patients and a short post-surgical period. There is no differentiation made between addicts, abusers, and pain patients; all long-term opioid use is viewed as unnecessary and even abusive.

Sadly, there is no scientific evidence for the effectiveness of long-term opioid therapy for chronic pain and, due to ethical issues in pain research, there may never be. Yet the anti-opioid campaign twists this into a statement implying such research has already been done.

The anti-opioid zealots state that, “There is no evidence that opioids are effective long term”, ignoring that the opposite is true as well: “There is no evidence that opioids are NOT effective long term”. The malicious intent of stating only the first half of the conclusion is clear.

Though my pain has worsened over the last couple of years, I don’t dare ask my doctor for an increase in pain medication. I fear any change could trigger outside scrutiny, which could result in an arbitrary decision by some bureaucrat to deny me these medications entirely.

The crusade against opioids is known to disregard a personal doctor’s years of judgment, assessment, and treatment of their patient’s pain. There are no reasonable exceptions or limitations to the simplistic goal of preventing all long-term opioid use.

The anti-opioid campaign has no understanding, no sympathy, and absolutely no mercy for suffering pain patients. I fear it is only a matter of time before I am cut off and left to suffer untreated pain for the rest of my life.

Without the pain relief of opioids, the rest of my life will be dominated by endless torment, and I cannot imagine allowing my pain to run rampant “forever”. The increasingly strident calls for a complete halt of opioid prescribing for chronic pain will be my doom.

13 thoughts on “Pushed Beyond Hope

  1. BirdLoverInMichigan

    How can anyone deny opioids or any other drug or treatment to a person with obvious or self-reported pain?

    All I can say is, God Sees All and Waits.

    Liked by 1 person

    Reply
    1. Zyp Czyk Post author

      That’s exactly what I don’t understand.

      I can only assume that such “doctors” (and I use the term loosely) are suffering from some terrible intellectual misconceptions and misunderstandings, combined with an utter lack of compassion and humility, fueled by a huge ego blind to its own fallibility and incapable of admitting any lack or flaw.

      We must remember “Never attribute to malice that which can adequately be explained by stupidity” :-)

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  2. Kurt W.G. Matthies

    For many in this debate, the concept of Primum Non Nocere is upside down.

    Primum non nocere is Latin for “First, do no harm”, which is supposed to be the fundamental tenant of medicine, according to Hippocrates. Actually, the so-called Hippocratic Oath does not include this tenant.

    Legally, this phrase represents the principle of Non-Malfeasance, which involves the evaluation of risk against benefit. In medicine, if a treatment is likely to do more harm than good, it is better not to treat.

    Denial of opioids for pain management is based on the assumption that this class of medication does more harm than good. Noted pain experts claimed the other day that “there is no evidence of benefit” in treating LBP with opioids.

    Some of us begged to differ, and noted science writer Maia Salavitz provided the source that proved benefit in the use of opioids. Zyp Czyk here has provided dozens of examples of demonstrated benefit.

    I offered my own medical records, but I am a sample set of one (n = 1), and statistically speaking, I’m a nobody.

    But many people in pain benefit from opioid analgesics. There is peer reviewed data that demonstrates this benefit, and miles of clinical data that will also stand as proof.

    Yet, some continue to deny truth.

    We had a problem like this in the 15th century. The controversy then involved the motions of the planets around the star we call the Sun. Copernicus, Galileo, Tycho Brahe, and Kepler all helped demonstrate the real motions of the planets around the Sun, but the Holy See and the mighty Roman Catholic church excommunicated scientists for contradicting their point of view in those days.

    Today, certain state medical boards, politicians, and organizations like PROP are attempting a similar power play on people in pain and the doctors who treat them with opioids.

    You can’t help but wonder … in a few hundred years, what will history show about today’s heated debate regarding the compassionate, effective treatment of chronic pain with opioid analgesics?

    Liked by 2 people

    Reply
    1. Zyp Czyk Post author

      I guess I posted this to specifically state what harm there is in choosing not to treat pain.

      It’s morally reprehensible and downright shameful of these crusaders to impose their *opinions* on our *experiences*.

      I have not heard of a single one of the opio-phobes having chronic pain themselves. Considering the statistical improbability of there being zero chronic pain sufferers in such a large group by chance, it’s clear that group’s opinions are only representative of pain-free people.

      They they are completely ignorant and biased about the experience of pain and don’t even know it!

      So smug and self-satisfied, they really believe they know what they’re talking about. They just don’t have a clue… and won’t until they experience chronic pain themselves.

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  3. Katerina

    Thankfully I am not in this situation as I don’t live in America. I think pain should be made available for chronic pain suffers.

    They are redirecting the argument by arguing they can do no harm due to ethical reasons, yet MANY non narcotic medications have brutal and/or worse side than any narcotic.

    Take Humira for example, this is one hard medication in which you have to decide if the good out weigh the bad and that’s exactly how narcotics should be treated.

    They are also redirecting the issue by looking at the people who abuse narcotics instead of looking at the shady medical professionals who are abusing their position and doling out medications for financial gain.

    I could go on and on with my own examples of doctors judging or accusing me of abusing narcotics. One doctor even gave me a shot of Narcan ( look it up ) to prove his point that he thought I was using drugs for recreational reasons during an ER visit. I was there for something not even closely related to over dosing! I didn’t know what he was giving me because I trusted him. One of the most horrible and terrifying experiences at my many trips to the ER. He also informed my parents I was abusing narcotics! It took months for me to convince my mom that there’s a difference between tolerance and addiction. My own GP was outraged. This is just one example, and I’m sure others have similar or even worse stories.

    To the people in charge I suggest they live in my body for 1 week and then tell me what I do or do not feel. Somehow I think their opinion might change.

    Great post by the way! If they only knew….😓

    Liked by 2 people

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  4. Payne Hertz

    No need to apologize for being angry…or fearful…or however else you feel. There is no emotion or reaction you can express that most of us out here haven’t felt. I am sure most of us have contemplated suicide and I have myself gone out and bought balloon kits with pure helium as they have recently started adding air to them which renders them useless for suicide. I want to have a backup plan just in case. An easy death is another right that is denied us.

    You live with the Sword of Damocles dangling over your head, waiting for it to drop, as does everyone with pain in this country. If you focus on this it will drive you mad. You have to live for the day while you prepare for the future. “Sufficient unto the day is the evil thereof.” Worrying about what might happen is natural, but the thing you fear may never come to pass. It is quite possible, even likely, that you will never lose your meds. Don’t let this fear destroy you.

    It’s funny I took a drive to Schoharie, New York today. It is a cute little town and not far from where I live so I like to drive there and hang around. This town is subject to frequent flooding, as is the whole Schoharie valley. During Hurricane Irene it was severely damaged by a “500-year” flood that destroyed many houses and historic buildings, swept away one of the oldest covered bridges in America and killed thousands of livestock. In the center of town there is a mark on the side of a building showing where the floodwaters reached 5 feet, but other parts of the town would have been under 30 feet or more of water.

    I wondered why in the hell anyone would ever move to such a place, no matter how beautiful, knowing they were just one major storm away from being under water. How could they live their lives and do anything knowing that flooding is inevitable and could destroy everything they worked for? Why even bother to do anything?

    I think this is part of what makes this town appeal to me. Like all us walking wounded it has no right to be here, yet here it stands, until nature knocks it down again.

    Liked by 1 person

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  5. Unhinged

    I have been this hopeless from pain. I cannot imagine going back there. Unfortuneately, I fear I WILL lose all hope again if opioids are no longer available for people like us.

    I identify with the endless search for an accurate diagnosis, and the hope of finding eventual relief from disabling, life stealing, constant pain. For me, it was many years of surgeries, injuries, dislocations, and seemingly unrelated medical problems. After my Pubic Symphysis separated for the second time during pregnancy, I was left with agonizing Sacroiliiac Pain that changed my life. After seeing numerous specialists who all had different theories about my pain & the cause… I endured years of misdiagnosis including both Lupus, and Ankylosing Spondylitis. ( my blood work showed Lupus anticoagulant antibodies, positive ANA, inflammatory markers, and tested positive for the HLA-B27 marker almost always seen in Ankylosing Spondylitis patients). Apparently, on MRI (my third), my SI joint damage mimicked A.S. Previously, I spent thousands of dollars on Physical Therapy, Acupuncture, message… Nothing gave me any lasting relief. Then came the years of Cortisone injections in my SI joints, hips, Lumbar spine & shoulders. I tried numerous NSAIDS (some at dangerously high daily doses), multiple non-opioid med trials, then Humira & Methotrexate. The ONLY thing that offered any relief was Opioids. I was NOT going that route, I was going to feel better, and not take “those drugs”. I was a Mom, a wife, and helping care for my two elderly parents.

    I also felt ashamed, embarrassed, defeated, alone, hopeless, and terrified about what was happening to me. I tried desperately NOT to allow my constant, disabling, debilitating pain ruin my life. I couldn’t sit, stand, lay, walk, bend without AGONY. Years prior, I had endured TWO major bilateral shoulder surgeries (Open Bankart repairs with 3 Metal anchors in each), for repeated, painful, torturous shoulder dislocations. EVERYTHING hurt! Neck, back, shoulders, hips, knees, feet, jaw, ankles, wrists. It was my Left Sacroiliiac joint that became my undoing. I would look in the mirror, and turn… Just to make sure there wasn’t REALLY a hatchet in my back. Doctors didn’t get it. They minimized my pain, and I felt like the biggest loser on earth that I couldn’t just toughen up and DEAL with it. My pain screamed at me ALL DAY AND NIGHT. My brain changed. I changed. I wanted OUT!

    So… With two sweet little children, a kind & loving husband, wonderful friends & family… I made a very serious suicide attempt. I had three blood transfusions, spent 9 days in a hospital, and was shipped off to a Psych hospital. It was horrendous. I was told that I talked too much about physical pain & not enough about “emotional pain”. I said, ” do you think they MIGHT be connected???” The best part of that horrible time, was that after I got out, I saw a new Rheumatologist. She looked at my history, my blood work, my tests, MRIs, x-Rays, etc… & said she didn’t think I had Lupus, or Ankylosing Spondylitis & that she wanted me to go see a Geneticist. The geneticist specialized in genetic connective tissue disorders. She diagnosed me with Ehlers-danlos Syndrome, told me she believed how much pain I was in, that I wasn’t crazy, and also… That there is NO cure.

    Luckily, I had a wonderful, longtime, brilliant, kind, compassionate doctor that I had seen since my teens for depression. He learned about Ehlers-danlos Syndrome, and also knew how much pain I had endured. We both knew that I would die if I continued to live with untreated & undertreated pain. He treated my pain aggressively & adequately with opioids (& antidepressants which I had always taken). He knows I am trustworthy, honest, compliant, and not addicted. He knows my Pharmacist. They BOTH know that I take and store my medication safely. I have never felt “high” on opioids, but I have felt pain relief. That constant connection in my brain that screamed at me all day & night… Has been broken. I can concentrate, sleep, read, sit, function, shower, get dressed, and LIVE with some HOPE, despite having a painful, incurable, and debilitating condition. My life isn’t perfect, but I have a life & am not consumed by constant chronic & acute pain flares.

    I have taken up all this space here because no one hears THESE stories about Opioids. People don’t realize they can restore life, and hope, and end constant suffering. That opioids (for some people) are live saving, and not just causing overdoses, addictions, and death. Unless you have lived with this kind of pain, most people don’t understand how bad it can get, and how much it can ruin your life.

    I don’t wonder if I’ll become suicidal if Opioids are no longer available to me, I KNOW I will. That is terrifying to me…

    Liked by 2 people

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    1. Zyp Czyk Post author

      I’ve come to believe that the people taking charge of opioid prescribing aren’t interested in our anecdotal reports of successful opioid treatment.

      Instead, they keep repeating the same of old line about how “there’s no evidence that opioids are effective long term”. I wonder how many of them even understand that there’s NO evidence because NO long term studies have been done.

      The unquestioning acceptance and repetition of such clearly biased statements, even by people who should know better (like other docs, pharmacists, nurses, etc), is a big part of this problem.

      Unfortunately, science doesn’t accept anecdotal reports as evidence. For most things, this makes sense, but when we’re dealing with something that’s unethical to experiment with, anecdotal accounts may be all we can get.

      I’d like to see the headline:
      “No evidence that opioids are not effective long term!”

      Like

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      1. Unhinged

        Yes, Zyp! And how about the fact that WE ARE the evidence! For those of us who benefit from opioids & haven’t overdosed, have mostly managed to stay out of Emerengency Rooms, and have saved our insurance company thousands and thousands of dollars by avoiding “interventional pain procedures”, etc… How do we explain THAT? Do they think our pain just decreased on its own? Intractable pain that wouldn’t budge, despite thousands and thousands of dollars in non-opioid treatments? I’d love to compare how much my insurance company spent on me BEFORE I started taking adequate, daily dosages of opioids, vs. what they’ve shelled out since. That’s pretty good evidence!

        Liked by 1 person

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  6. Pingback: Book: The Painful Truth: What Chronic Pain is Really Like | EDS Info (Ehlers-Danlos Syndrome)

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