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Why are people who live with severe, daily chronic pain not included in the conversation around pain management?

opioid pain killers

The title says it all. Why are those people who are living with daily, severe pain excluded from the conversation around pain management?  Why are we treated as problems with no solution, difficult, unpleasant and something to be swept under the rug?   With “patient centred care” being the new paradigm and the gold standard of care, in most diseases or conditions patients’ lived experience is included in the development of treatment guidelines and standards of care.  But not in chronic pain where those with the most severe disease are ignored and vilified and never consulted or even acknowledged. 

If a patient story is included in a webinar, seminar, or podcast, the patient is one of two stereotypes.

  1. The addict who used to take opioids but overcame their addiction and Hey Presto! their pain is gone too!  They no longer take any medications for pain.
  2. The person living with mild to moderate chronic pain. Occasional pain or intermittent pain, and usually not severe. Someone who catastrophised and was afraid of exercise.  Someone who became house bound due to a self-imposed prison of fear-based exercise avoidance and anxiety. Once they stopped being afraid of moving, of getting out of the house, they found that their pain didn’t get worse, but got better, and now they can do so much more.  And they no longer have chronic pain!  They no longer take any medications for pain.

Do you see a pattern forming?

And the person who is never included? The person suffering from degenerative disease, from inflammatory disease, from nerve disease or injury. These are kinds of pain that can be both severe, and constant. Life-limiting pain.  High Impact Chronic pain.  Disabling pain.

This is biological pain. Pathological pain. Structural pain.  There are many names for this type of pain, but none of them are acknowledged anymore.  Because now all chronic pain is deemed to be psychosocial, and all treatments offered for chronic pain are psychosocial.

Common sense says that psychosocial treatments will help psychosocial pain.  But how can psychosocial treatments help biological or structural pain?  It can’t. which is why so many people living with the most severe chronic pain conditions are suffering widely.

Biological pain generally requires a biological treatment:  procedures or surgeries to correct structural problems if they exist.  Where surgery or procedures are not appropriate or not effective, pain medications are necessary to reduce pain.

Of course, all pain has psychosocial components and those of us living with biological pain do address those psychosocial factors. Most of us figured out for ourselves that sitting around dwelling on pain doesn’t help, and that movement is essential to retaining physical function.  Most of us do as much as possible every day, we want to maximise our lives.  But painful, progressive diseases tend to progress and we often find that over time we are capable of less and less, and do become disabled and largely housebound.  The medical story says that we do this to ourselves by avoiding leaving the house.

For me, the truth is I generally cannot leave the house without help. If there is no help, as is often the case, I can’t leave the house.  That’s a physical thing, not a psychosocial one. I do not disable myself through fear or avoidance. I physically am not able to walk or drive a car most days because I am in severe pain.  No amount of mindfulness or positive thinking can change that, although I live very mindfully and generally have a very positive outlook.  These things help my pain, but only to a point.  

I exercise as much as I can.  I’ve found that those of us living with severe, daily pain generally DO exercise. We do move. We are housebound, not because we are afraid of causing ourselves pain, but because our pain is constant and severe. It is always there. If we leave the house, the pain comes with us.  On a good day we might be distracted from our pain for a limited period, and that’s amazing. And worth the rebound pain that we experience afterwards.  But we still need help to leave the house, and some of us don’t have that help. Some of us have been abandoned by pretty much everyone, because let’s face it, we are disabled, we are in pain and we are hard to be around for this reason. 

Some people don’t believe us, and therefore don’t want to be around us.  Some people do believe us but don’t want to face the reality of our lives and therefore don’t want to be around us.  In short, believe us or not, we’re a confronting population and we’re not much fun to be around or think about too hard.  In fact ‘too hard’ pretty much defines us.  From friends and family to medical professionals, we are always deemed ‘too hard’.

And therefore, our story is never told.  People like happy endings, but there isn’t a happy ending in severe, daily pain.  There are no podcasts interviewing people living with severe chronic pain, because that’s not entertaining or uplifting. And in our society rife with toxic positivity, that’s the most important thing.  The media doesn’t pick up our stories because there’s no click-bait title or ‘how to’ solution.  And medical professionals certainly do not want to talk to us, or about us, very much.  We are the dirty little secret of pain that no one wants to acknowledge: some people live with degenerative diseases and/or injuries that cause severe pain and this severe pain is very hard to treat. 

We are stigmatised because we require opioid pain medications to have any quality of life. To function at all. Opioids do not relieve all of the pain, but they generally give us a few functional hours a day. Some people are able to function almost normally thanks to their long-term opioid therapy. They take their medications exactly as prescribed and hold down jobs and high-level careers. They take care of their families, and they are active in their communities. 

Until their doctor takes their opioids away.  Then they live with severe, daily pain and become housebound. They lose every aspect of their life that makes it worth living. They become couchbound, confined to four walls and life with a screen as their only window to the world. 

For some of us opioids only give us partial pain control. For me personally, I get six upright hours aon a good day, but I use those hours to the full. I work part time, I exercise, I take care of my family.  I play with my dogs, I cook and clean and manage the mechanics of life.  Without my opioids I am disabled and require help with the most basic of tasks, showering, feeding myself, brushing my teeth.  I find it humiliating to require that much help.  Especially when there is a simple solution to my pain, that gives me some quality of life and the ability to care for myself and my family.  But I’m not allowed to have this solution because in the last few years opioids have gone very much out of fashion. They have been demonized, as have the patients who rely on them for quality of life.  The science has been buried and cherry-picked and the truth is buried far beneath tonnes of half-truths and twisted statistics while doctors and physiotherapists and pain neuroscientists build lucrative careers on the bodies of those living with severe, daily, chronic pain.

Even more frightening is that lately there have been a few media stories of chronic pain patients overseas who, having had their opioid therapy taken away, have applied for and received approval for medically assisted death. 

https://www.painnewsnetwork.org/stories/2022/7/28/waiting-and-wanting-to-die-in-canada?fbclid=IwAR3nCaxbeX_eOmYN3zExuH45sNjWS5DjfCNL3yrwUcQNN7OzzK4eaYcXy1w

The powers that be in their countries will not give them opioid pain relief, as its far too dangerous. But they will assist these people to die.  Problem solved. 

Reading this story is heart-breaking. And terrifying.  This is not the only case of ‘voluntary’ assisted dying.  And I find it hard to see it as ‘voluntary’.  This lady’s pain has been left untreated, she has been denied medications that help her pain and give her quality of life.  She has been worn down, beaten by a system that does not care about pain, no longer believes in its existence. Her story is a tragedy, and every medical professional, every organisation, ever person who is anti-opioid should be deeply ashamed.   THIS is where your anti-opioid advocacy winds up.  Death is now the only way out of pain for some of us.  Everyone has their limits. Everyone will reach a point where they can live with the pain no longer.  Just look at the suicide statistics.

A quick google scholar search reveals multiple studies that rank chronic pain as a significant risk factor for suicidality.  This study states that twice as many people who live with chronic pain complete suicide than people without chronic pain.  So living with chronic pain makes it twice as likely you will die by suicide.  That’s a significant risk.

https://www.sciencedirect.com/science/article/abs/pii/S0278584617304670

This study quantifies suicidal ideation as being prevalent in 24% of chronic pain patients. Those who have disabling pain and are unemployed are six times more likely to report suicidal ideation. That is, those who live with the most severe pain, those who’s pain limits their ability to work.  Makes sense. A lot of a person’s identity, meaning, and satisfaction in life comes from their work. When that is taken away, there is a huge hole that cannot be filled.  Additionally, many people see those who do not work as worthless, useless, drains on society.  Facing that stigma every day is not easy.

https://journals.lww.com/clinicalpain/Abstract/2014/05000/Predictors_of_Suicidal_Ideation_in_Chronic_Pain.1.aspx

Imagine suffering interminable, intractable pain. Most people don’t believe your pain can be that bad.  Your doctor tells you there’s nothing they can do, even though they used to prescribe a medication that relieved your pain to a degree. You used to work and have a social life, albeit limited. Now, they say they cannot prescribe these medications anymore.  Everywhere you turn for help, you are dismissed, demeaned, and denied.

How long could you keep living this way?  With all of this stigma, all of this emotional pain on top of the physical pain.  Not having a voice, being silenced, having no control, no agency, no power. 

I completely understand and support voluntary assisted dying. Living with constant, severe pain is incredibly difficult.  Its not a life.  If there is no hope for reprieve, no hope for relief, I understand from personal experience why people choose this option.  

The problem is that there IS a solution. Pain CAN be relieved. People do NOT have to die! 

People living with pain can do everything right but still be in pain. We are positive. We meditate. We live mindfully.  We do expect our pain to improve, and we also accept it might not, and that’s OK.  (Depends which brand of psychotherapy we’re engaging in as to which answer is correct). We move as much as our broken bodies will allow.  We’ve done multiple kinds of manual therapies – massage, acupuncture, chiropractic, osteopathy. We have spent thousands and thousands of dollars looking for effective treatments and paying for people to help. 

And we are still in severe, daily pain. Locked in our houses with no help, no support and the myth that we exaggerate our pain, that we could fix our pain if we weren’t so lazy, or so afraid to try self-management techniques.

We are the most maligned, most misunderstood and the most feared patient group ever to darken a GP’s door.  We are difficult. Demanding, and unwilling to magically fix ourselves, according to multiple podcasts, medical articles, medical studies, medical texts and doctors posts on forums.  We are the people that everyone wishes didn’t exist.

And looking at how many pain patients are being approved for voluntary assisted dying, maybe one of these days we won’t exist.

I, personally, as a pain patient advocate, have been invited on podcasts. I’ve been interviewed by the media.  I’ve applied to speak at conferences, on webinars.  The media always either drops my story or minimises my pain.  Reporters have an angle, and its rarely “Oh this person is in terrible pain!  We must help them!”.  That does not sell. That does not generate clicks. “Addiction!”  “Bad medicine!”  that gets clicks.

Podcasters have invited me on their show, and then researched me. And found that I am very much pro-opioid for those who need them. And then I’m uninvited. 

Just this past week, I was dumped from Chronic Pain Australia’s facebook live session, as the patient advocate, the person with lived experience of chronic pain.  I was invited to take part in the facebook live panel many months ago by staff at Chronic Pain Australia.  I was very honest about my views.  As National Pain Week approached and I heard nothing I realised I had been dumped.  The staff member who invited me to be on the panel did not even do me the courtesy of letting me know that I would no longer be reuqired.  She simply did not contact me again.  So little respect did she have for me.  The person whom they replaced me with is an employee of Chronic Pain Australia, who provided the story they were looking for.  The topic of opioids was never mentioned, and I was silenced. Once again. 

But I wont be silenced forever.  I will keep working to raise our voices.  We do exist. We live with severe, daily pain and we deserve to be treated with respect and have our pain treated with safe and effective medications, where appropriate.  We are the most vulnerable members of any society.  We have a voice.  We are talking as loudly as we can, and we’re tired of being talked over.  We get replaced on panels, webinars, in media articles and in podcasts by a completely different kind of person, completely different kind of patient. And our existence is never acknowledged, let alone our voices heard.

But we are banding together and that’s what pain patient advocacy is all about. A place for people with lived experience of high impact chronic pain to gather and support each other.  And use our skills and experience to force ourselves into the conversation. To pull out a seat at the table. To stand if necessary.

We are here. We exist. We need help. And we’re not going away.  We’re only going to get louder.

27 thoughts on “Why are people who live with severe, daily chronic pain not included in the conversation around pain management?”

  1. Excellent article and wish chronic pain would be addressed more frequently on tv. I have found chronic pain is taken more seriously and treated better in the Western part of the USA. Just my opinion

  2. So well stayed ….. I applaud you for articulating, so well, the unseen place we find ourselves in, it amazes me that, with millions of us caught in this living hell, no one with any real voice in media will acknowledge our situation and how simple it would be to stop our torture and allow us some quality of life once again. This is what happens when we’ll financed Zealots, Opportunists, and Profiteers work to manipulate he system to serve their own personal agendas.

  3. This is the best article I have ever read describing what it is like to be a chronic pain patient. I am 51 and have suffered from chronic pain since I was a teenager. For years, opioids took the edge off and I was able to get a masters degree in psychology. (I continue to work part time.)

    I still suffered a great deal and there were days and even weeks when I couldn’t leave my bed. Always pushed myself and at least the medication helped. Flash forward to about six years ago when they took me off of all opioids, including a 150 MCG fentanyl pain patch and Vicodin that I had been on for eight years. I ended up losing 40 pounds, and at 85 pounds was admitted to Johns Hopkins. They wanted me to go into their chronic pain program, which would teach me psychological ways to overcome my physical pain.

    I have lupus, fibromyalgia, migraines, neuropathy, and had my entire large intestine removed, arthritis and so on. I practice as a therapist and I know all the coping skills they would have presented to me. Heck, I could teach the damn class. Now my daughter is 21 and in constant agony and very suicidal.

    I told her the other night if assisted suicide were legal I would help her die. And then when I read the article about the woman in Canada I was mind boggled. What has happened in the world where we would rather kill people than treat their pain? Is the biggest indicator of the fact that we don’t matter. Just kill them instead of helping them. Imagine if we did that with cancer .

    Thank you for this eloquently written article that speaks volumes. If only we could get people to read it and internalize it.

    1. Agree absolutely 100%! The article explains very clearly what it is like to be in the shoes of an ‘invisible’ chronic pain patient, & how, despite striving to be the best we can with the limited energy & resources we have, the authorities & media still ignore, punish & stigmatise us, especially when it comes to the bias shown towards our mobility-restoring & life saving opioid pain medications.

      And when you talk about teaching the class, it certainly resonates, as when I attended my 1st public hospital pain clinic, after waiting in the system for 7 years to be seen, the basic & useless ‘pain info 101’ we were given during the lectures we had to endure, were something I could have done in my sleep!

    1. Thank you, everyone, for your comments. We’ll try to share this widely, but unfortunately we all know that mostly the media does not want to hear. Politicians don’t care until you can show you’re a large voting body. But we will keep trying.

  4. Every. Single. Word. Here in the USA, the CDC knows full well that 50 million+ of the 100 million+ pain patients that our Government agencies have identified through various calculations, live with “high impact” – i.e. disabling & incurable – PHYSICAL – BIOMEDICAL -pain. 50 MILLION+ human beings are being systematically singled out for torture, denial of vital medical care, and early, preventable deaths. We MUST start using the correct words for what is being done. Genocide and Applied Eugenics.

    Of course – those doing this to MILLIONS worldwide, in numerous countries, will NEVER admit the full horror of what they are WILLFULLY doing. But make no mistake. THEY. KNOW. EXACTLY. WHAT. THEY. ARE. DOING. This IS the “Genocide of Pain Patients.” This IS Applied Eugenics. We have been knowingly and WILLFULLY singled out for this heinous mass population-based “experiment.” So far, the general, able-bodied public isn’t batting an eye, and they are getting away with mass torture and mass murder of Pain Patients on a scale that has never been seen before in modern history.

    This is NOT an “oopsie,” not an “unintended” or “unforeseen” consequence. It is a PLANNED, PLOTTED, and DESIRED outcome. How do you get MILLIONS of “incurable” and “expensive” patients to VOLUNTARILY “choose” Government suicide as a viable “option?” DENY them vital, life-restoring, biomedical care. DESTROY any HOPE of them EVER regaining their former quality of life. Everyone has their breaking point…wait for the outcry and demand for euthanasia to grow. Then “mercifully” meet that “need.” The need for mass euthanasia that THEY created by DEMONIZING and DENYING the very vital, medical care we need to LIVE. How convenient that they only had to destroy access to a SINGLE class of medication – rx opioids – the ONLY treatment for millennia that has WORKED in the treatment of incurable, unavoidable, biomedical pain.

    This has STARTED with Pain Patients. We were an “easy” target – “easy” because we are universally loathed, mostly disabled and poor, and there was only ONE treatment that actually works for us long term. But make no mistake, this WILL NOT END with Pain Patients. We are merely the “first wave.” However, they’ve hit a MASSIVE and DIVERSE target – encompassing a myriad of conditions/diseases that have biomedical pain as a primary, incurable symptom. It cuts across ALL gender, age, and racial lines. It even transcends class – though the uber wealthy will NEVER suffer. They will ALWAYS have access to “concierge” doctors and pharmacies that cater to the upper class who can afford it. It’s like the “grand slam” of Genocide. It’s almost as if they got together to figure out, “what is the ONE unbearable symptom that ALL these patients experience universally? Biomedical PAIN.”

  5. Excellent article! Thank you & thank you for supporting VAD.
    I’m one of those who’s ‘choosing’ this & my pain should finally end next spring. Unfortunately I have to travel to Europe to do so, as I live in the US.
    I’ve been lucky enough to have had access to all the different tx options, the only ones I haven’t tried are the pump & EMDR.
    I can’t sleep in a bed, rarely sleep at all & live in a chair 22+ hrs a day. Pain has progressed to the point that even when not moving, it can be excruciating.
    I’m done.

  6. Greatest article that I have read since the CDC decided to regulate legal prescription medications and weaponize the practice of medicine. Never in my wildest dreams would I think that I can have assisted medical suicide but I can’t have access to opioids for pain relief and quality of life. No one is immune from pain. These anti-opioid biased ideologist take life for granted. That they can’t end up suffering severe chronic pain. Only one accident, surgery, traumatic injury and you yourself might become a chronic pain patient. No one asks for a lifetime of pain and suffering. Is unbelievable that American government prefers forced pain and suffering inhumanely and cruelly to the free people. Where has empathy and compassion gone to? I am a RN and a chronic pain patient. I suffer 24/7 every day. Surgery with complications resulted in chronic pain for me.

  7. By not making this shareable,You silence us.I have known since i was a toddler that i would be murdered for being disabled.I have been stabbed,strangled,spit on,beaten unconscious,eyegouged,genital tasered,poisoned,and triaged for surviving daily murder attempts by my own doctors for 22 years..

  8. The demonization of what medical practitioners of past generations referred to as “God’s medicine” — I’m talking about opiates of course — is, in my view, consistent with America’s Puritan past. Along with many other outcast religious groups, the Puritans self-exiled to America and could carry on their strange version of Christianity here.

    These sects tend (because they’re still around) to be Calvinist — pleasure-denying, self-identified sinners hoping that repentance for past actions will get them into heaven. At the top of the sin list is sex, of course, but not far down is intoxication.

    The temperance movement in this county got alcohol banned for 13 years. They demonized alcohol and by association those who partook of it. Because anybody who spoke out against them was labeled a trouble-maker and worse, the temperance fanatics controlled the national discourse about alcohol and got away with it because of a lack of courage among regular Americans who liked a beer, but when push came to shove, had to pretend to denounce it. When FDR lifted prohibition in 1933 the country celebrated. Human nature is a very strange thing.

    It’s not helpful that the mythology Americans believe regarding opiates is that they are deadly and addictive, brought to this country by the “yellow peril” who wanted to rob and manipulate upstanding American white people. After that crazy 19th century characterization of opiates came the 20th century, with heroin and the character assassination of anyone caught using any drug related to the poppy.

    Nobody will deny opiate addiction has caused much human tragedy. But the false logic — that if opiates are addictive, anyone who takes them must be an addict — leaves out a very large and non-criminal population, sufferers of chronic pain.

    Those whose agenda is the elimination of opiates in medicine as well as everywhere else in American life, tend to be those who profit by huckstering opiate substitutes or treatment solutions. They are the usual grifters, owners of expensive rehabilitation resorts, along with quacks who operate “pain management’ clinics, also expensive, selling worthless “new age” medications and offering time-wasting “wellness” seminars.

    They are the true enemy of the chronically afflicted, and somehow public sympathy has swung their way. By demonizing the drug, they transfer that characterization to the user of the drug, regardless of their intent.

    The hucksters are provided with the self-serving help of a willing media that knows “opiate addiction” and related words are hot buttons that draw viewers and readers, and advertisers. The message that is central to the hucksters’ their con is that all opiate users are pleasure seekers, immoral low-lifes trying to get high. Take that, pain sufferers!

    Why millions of Americans DO want to get high is a subject for another day, but nobody doubts America has a very serious illegal drug problem — exemplified by currently fashionable bootleg fentanyl.

    Equating chronic pain sufferers with drug addicts is completely false, and that can be determined by comparing those who have died from overdose: recreational drug users make up nearly 100 percent of that number, and chronic pain sufferers nearly none.

    Consider the OxyContin scandal of the 1990s, when an FDA official wrote the label on the bottle that claimed this slow release drugs was not considered to be addictive. (That official was later hired by Purdue Pharma for a high salary.) As it turned out, the Purdue marketing team got thousands of doctors and pharmacies on board, citing OcyContin as a cure-all, and got many more thousands of impoverished, uneducated Appalachians addicted. These people were living desperate lives and wanted to get high on SOMETHING, and Purdue Pharma was happy to oblige. But when thousands died, no one paused to consider the misery that must have been their lives. They were briskly assigned to the category of drug-seeking degenerates.

    Later, when anti-opiate crusaders were preaching about the evils of opiates and those who take them and using Appalachia as an example (carefully leaving our the government agencies whose ineptitude let the epidemic go on for years), they cite thousands of deaths from opiates — never mentioning that those who died were trying to get higher by taking larger doses. Patients who went to their ethical physicians during this period for treatment of severe pain and were prescribed opiates almost never overdosed. Their doctors monitored their intake, tapering their patients off as their pain receded. And most importantly, these patients were not looking to get high! Relief from their pain was their motivation for taking opiates, and in the rare instance a pain sufferer overdosed, it was by accident.

    Recently, HBO and PBS have run documentaries about the opioid scandals, first with Purdue in the 1990s, and now in the illegal marketplace, where more people than ever are dying from overdose. Not pain patients, mind, but addicts who buy synthetic fentanyl from drug dealers and are willing to risk death by overdose for the ultimate opiate high.

    On HBO look for “The Crime of the Century” about the Purdue scandal. The reality of that evil consortium of regulator (FDA), drug manufacturer (Purdue) and the villains who owned all the apparatus (the Sackler family, now billionaires) will shock even the most hardened social critic.

    On PBS, see “7 Days: The Opioid Crisis in Arkansas” and “Do No Harm: The Opioid Epidemic”.

    Integrity is a scarce commodity among the professions in today’s America. And so is courage. To my mind the most despicable of all the charlatans and opportunists who profit from what they condemn are the physicians who are fully aware of their patients’ intractable pain, yet lack the guts to write them appropriate opiate prescriptions out of fear of being arrested by the DEA. Where is the American Medical Association, which is supposed to look out for the welfare of physicians as well as ensure professional ethics are followed?

    It’s all a sordid story, and in the great tradition of this country, the scoundrels rake in billions (the Sacklers, CVS Pharmacies, Purdue) while the victims (chronic pain sufferers, and I can’t help but also add those innocent Appalachians who were knowingly addicted by Purdue) are derided and despised, condemned to the hellish fate that should, were there justice, befall those whose only important agenda is their own.

    Advocates for fair treatment of chronic pain sufferers, we are living in bad times for people of good will. There is no money to be made from our suffering, so why even acknowledge our existence? If we stand up to these bastards, be ready to be called everything under the sun, because we are a threat to their empire of lies.

  9. I applaud your article and speaking up for us! Thank You. You are spot on.
    For me? After 4 Cervical Spine Surgeries, 3 Blown Lumbar Discs L2-S-1, Fibromyalgia, Chronic Daily Migraine, Arthritis in my spine and joints of my body, I’m in ridiculous, severe pain.
    My former pain management doctor after 6 six years of injections to my spine, which stopped helping and were no longer “ cost effective “ due to my Medicare HMO SNP Insurance and I no longer want them as after researching they cause discs to become desiccated ( dried out) which mine are) she stripped me of my Norco opioid which didn’t completely take away my pain but it made me mobile and more active. I didn’t abuse. She gave me 1 one month to get myself off of them after six years. I did it.
    Ibuprofen doesn’t cut it.
    My newer Primary Care Doctor referred me to a different pain management doctor. I didn’t go right away. I waited. Building up my courage to even call for an apartment . When I did call I had to leave a message. Their message was “ if I qualify to see the doctor “.
    The doctor who is contracted with my insurance company and and I have authorization to see. Well, guess what? He refused my insurance.
    I told my Primary Care Doctor I won’t go through this again. I cannot do it. It’s too much. I’m very strong. I’m dependent on my Faith. But this is breaking me. But I refuse to give up. I’m a Pain Warrior. We fight. I do tell others my story if nothing just to be another voice.
    Thank You for reading.
    Gentle hugs and love 💜🥰

    1. You make such a good point about injections! Five years ago (here in Australia) I was told I could only have 2 injections per year, and no more than 8 over the course of my life. Because the side effects from these injections are terrible, ultimately they weaken the connective tissue and make pain worse. Along comes the ‘opioid crisis’, or rather ‘opioid hysteria’ (around five years behind the US here) and suddenly these injections are being pushed on everyone. I was even blackmailed “If you refuse the spinal injection, I cannot provide you alternative pain care”. My pain doc said he’d label me as ‘non-compliant’, another strategy in the pain docs bag’s of tricks to force patients into treatments that are lucrative for them, and ineffective at best and harmful at worst. Some pain doctors are looking after their own interests, not their patients.

      We’re based in Australia, so we don’t have the same issues you do with insurance in the US. But we DO have issues with GPs refusing to provide pain care, or even health care at all, to chronic pain patients who are on long term opioid therapy. Most people believe that doctors are duty bound to provide care, but this is not true. They can refuse and ‘sack’ a patient for no reason. And in 2020 this happened to many people, and many GP practices started displying sigs that said “NO OPIOIDS WILL BE PRESCRIBED”. Some even added ‘Under any circumstances”.

      You are a warrior and I am sorry for all you have endured. Telling your story DOES help. That’s one thing we can do, band together and tell our stories. Sending my thoughts and my promise that we will keep fighting.

  10. I’m nearly 64 years old and have been a chronic pain patient for over half my life. I’ve had 14 back surgeries and am fused with hardware from T-2 to my sacrum and out to both S-I joints. I can’t bend or twist my spine. I have to use a walker for balance. I cannot walk very far. I was a nurse and was injured at work three days before my 29th birthday.
    I had adequate pain care until 2014, when it was stripped away from me for no reason, other than the doctor I was seeing at the time was being investigated by the state…obviously I was on a quite high dose of morphine.
    I was moderately active, going out for walks, seeing friends, even volunteering three times a week, teaching people how to read.
    Now, that’s all gone. I stay in bed, lying only on my left side, most of the day. I miss going out and doing things.
    I do have help at home, although my best friend, also a chronic pain patient that lost her meds three years ago, passed away at the end of January. She had sudden onset renal failure, which led to total organ failure. She was 60 years old. An MRI of her brain showed a twenty percent shrinkage of her cerebral cortex. She was in an irreversible coma for two weeks, being kept alive by machines, before mercifully passing on. I miss her every day.
    This is nothing but genocide. The government wants to get rid of all of us. We cost too much.

    1. I’m so sorry, for all you’ve gone though, and what your friend went through, and her loss. Earlier on, I was very hesitant to use terms like ‘genocide’ but with all that I have learned, my research on the science, the politics, and all the stories I’ve heard, I’m afraid i have no choice but to agree. The really brutal part is that opioids are very cheap medications, very effective, and when taken as prescribed (as the vast majority of chronic pain patients do) very safe. We are not expensive to treat! But it does seem that the powers that be would rather grant us assisted suicide and let us die, than allow us humane, effective pain relief. And even when they aren’t physically causing death, they take our lives away just as surely when they take away our pain medications. Because they take away our ability to move, to interact with family, friends and the wider community. They take away our ability to enjoy our lives. Your description of spending your days lying on your left side….that’s not a life. It’s medically sanctioned torture, because a safe, effective treatment exists that granted, will not ‘cure’ your pain, but will return to you some quality of life. It’s devastating how common your story is. Sending you my promise that those of us who are lucky enough to still have some pain care are doing our best to fight this issue, and return safe, effetive pain management for ALL pain patients.

  11. The article hits everything that is associated with chronic pain patients and the providers who treat them or mistreat them.

  12. Here in the US the media stations are all owned by a few large corporations, just viewed then under various names so they only broadcast their own agenda, only ask their questions of their doctors etc. we will most likely never get a fair shake, or it will be a handing out of crumbs sadly… doesn’t mean we should give up by any means but REAL progress will be a long way off, too much MONEY is being made and these grubbers are not going to give it up to ease our pain, they just don’t care, and we can’t make them, that’s the reality of it. I looked and looked until I FINALLY found a doctor who WOULD work with me, it took nearly 3 years but it is what it is and I have the modicum of relief I can get to live the life I can live with the tools I’m given… there are people far worse off than I am and far better off so I’m going to be as happy as I can be in what ever circumstances I find myself in and grit my teeth on the days my pain is unbearable knowing it can’t last forever (at least that’s what my mother used to tell me)👍

  13. Thank you for so concisely describing the life of a chronic pain patient. I could not control my tears as you’ve given voice to the “ALL” of my experiences with moderate (on a good day) to severe daily pain. The insane thing is I used every NSAID and over the counter pain meds for years, to the point of giving myself chronic gastritis. While my GI physician instructs me to “never, EVER, take another NSAID in your life!”, other physicians tell me take the NSAID, just take two hours after taking Zantac. Really?! Before I ever talked with my AMA physicians about my pain (outside of Rheumatologist), I tried massage, chiropractic, Accupuncture, Accupressure, myocranial, Chinese medicine, Physical Therapists l, and ultimately trauma therapy. NOTHING alleviated my pain substantially. Oh, I’ve also had over 33 injections between my spine to coccyx and shoulders. Only the cervical ones helped (less than two months), as well as the ones to coccyx and shoulders. Short lived relief. In fact, Chiropractic caused more injury. Yet, these are the very things being pushed at chronic pain patients, along with handouts on opioid addition. I finally sought help for pain initially from Rheumatologist. He said if we found the right medicine the pain would be relieved. WRONG! Desperately I sought help from a Pain Physician who obtained multiple MRI’s a discovered a whole slew of degenerative diseases, Tarlov cysts in spine and sacrum, and almost all my discs from cervical through lumbar were either bulging or had ruptured. My shoulders need replacing due to RA, and severe osteoarthritis. As does left hip (right hip replaced 7 months ago), and both my knees as well. Top RA, OA, DJD, DDD, osteoporosis of spine and hips (even after treatment for two years…could be from all those injections in spine), Sjogrens Disease and Fibromyalgia. Next doctor who infers the pain is psychological will likely meet my fists. I’m so damn weary of it all. I believe in the Death with Dignity legislation. It should be a federal law. I’m damn sure not trusting Texas legislators to pass this act. They don’t believe I have a right to autonomy of my body in the first place. The anxiety and humiliation I’ve gone through with Pain Physician pushing injections yet allowing for some opioid treatment. I have nothing to hide peeing in a cup once a month, yet it’s humiliating that I must do so. I’ve not once been non-compliant. I can no longer rate my pain on a 1-10 scale, yet they insist I do. I use to toss out a number they thought acceptable around their motto if I get 65% relief, that is “good enough”. Little do they understand my 6.5 would be their 16 were they to FEEL it. I also have two chronic severe lung diseases. This is not living. I use to hike a lot, explored caves, and as a Hospice RN, I provided exceptional care to my patients and their families. Now here I am at only 69. On a good day I’m active in mornings, but as SOB and severe pain set in for duration of day, I just exist. Trying not to hurt. I’m close to being done with this nightmare made by politicians and businessman my applauded and support to physicians who still care. For those that have joined in throwing us under the bus, I only HOPE your karma allows you to become one of us.

  14. My 17-year-old son suffers from intractable pain syndrome. His life is 24/7 pain, but when he is ill—his “normal pain” of 8 becomes a 10, and we head for the hospital.

    I just read his latest ER report when they released him with no treatment because he appeared “mildly uncomfortable.” I guess he’s supposed to use the small amount of energy he has left to stage a hissy fit, scream, yell, and carry on? That’s not what chronic pain sufferers do. They take their pain silently, coolly. They save their energy. This is not a pain sprint, it’s a fricking pain marathon. Please, doctors! Understand the difference! Chronic pain is not acute pain—and PAIN IS REAL.

    He’s got a prescription for pain that keeps him barely functional. When he goes one degree past that, he’s in silent and perpetual agony.

    Yes, he has prayed for death. Who wouldn’t? He’s being tortured by a system that cares more about whether he will became addicted than whether he will have a life outside of this dark window of pain.

    STOP TORTURING US! He didn’t ask for this pain, he’s been through every f^#%ing “cognitive behavioral health” and “mindfulness” training in existence. He’s tried every tens unit, acupuncture, and alternative out there. Do you think we are stupid? Do you think he’s lazy? Do you think we haven’t considered EVERY POSSIBLE way out of this pain?

    Get real! My son needs opioid treatment, and he needs much more than he’s getting now. He wants to go to school, have a girlfriend, make a career—not sit and waste away.

    What the hell is going on? When did doctors and society become so cruel, so willing to collude with disease to take lives?

    Wake up and stop blaming my son for being ill. Maybe, when he gets the medication he needs, he will change the world.

  15. Thankyou for writing this as a 37 year old woman who could with opiods for my pain actually have a life is sitting here in bed with adhesive ulcers from lidocaine patches because they at least let me walk when paired with meds. I tell the doctor about the ulcers and they look at me like there is no solution or that 4kmg acetaminophen and 3200mg day Advil in addition to my other pain meds. Plus the need for pads that eat my skin is acceptable when a simple increase in opiods could fix so much.
    I am glad you call them out they think since we can’t march that we can’t resist.

  16. I completely applaud you for writing this article. It is so true and I wish people would understand. This whole practice of taking away pain medication from people who are in pain just because other people have died from using the same meds inappropriately is absolutely ridiculous. It’s like taking my car away because some stranger I never met killed someone with their car. We don’t do that…. why are drugs so demonized?

    But I must say, do not advocate for assisted suicide. Do not say you believe it’s ok to do it. Killing yourself is never ok,even if you are in pain. We should be fighting for our lives!! We should be fighting for treatment for pain so we don’t have to resort to suicide. If you advocate for suicide and get it excepted that will be what your option is. This is what the man is going to say to you “Oh, so you like suicide for pain? Well why don’t you just do that then, because opioids are not an option.”

  17. I’ve been living with chronic pain since lumbar back surgery in 2016. Now I have degenerative spine arthritis and severe hip pain in both hips with sciatica in right leg. I have also suffered from severe, debilitating migraines since Puberty.

    My last routine wellness exam, they REQUIRED me to take a urine drug test before I left. No notice, no option to opt out. I also had to sign a “pain contract”. With my regular PCP. I was incensed! Why are they treating me this way? I’ve been coming here for 20+ years. I have never had to take a drug test in my life! I felt like I had been raped. I didn’t understand. What I get does not even help me be pain free anyway. I don’t drink alcohol or do any other street or illegal drugs. All it showed was I was taking my hydrocodone as prescribed. But it made me mad, like I wasn’t believed. But what can I do about it.

    I am also seeing an orthopedic surgeon for this new hip pain. I am unable to exercise at all. I cannot take a full walking stride. I am at my wits end. I prayed for Covid pneumonia to take me when I was hospitalized in Jan. (Which they keep after me about taking the “vaccine” which I will not willingly do.)

    TBH, I feel dismissed, and belittled. I feel men of a certain age and also people of a different minority group have no problem receiving Rx pain meds. The pain clinic I was referred to burned nerves that relieved nothing and then told me there was nothing they can do except another surgery to implant a nerve stimulator. NO THANKS! I have read those things are not easily controlled once implanted.

    The original surgeon feels like I need nothing for pain yet I DO need a spinal fusion. Again NO THANKs. I went to 2 other doctors at Duke and Chapel Hill which strongly recommended that I NOT have that surgery, bc they have seen most patients are worse off afterwards.

    I am now 56, I led an extractive life with my husband biking, kayaking, hiking mountains and working out 6 days a week up until my back surgery.

    My husband continues to be active playing golf almost daily and fishing and kayaking on a whim.. I am jealous and resentful. I have gained50 lbs on my 5’3 frame and barely am able to walk now and am in constant pain. I cannot cook our traditional holiday meals for my 2 sons and their gf’s any longer. I am so depressed. The tears fall as I type this.

    My whole day has to be planned around how much pain I will be in if I do this or that. If I didn’t believe I would spend eternity in hell, I would have already ended this half life existence.

    I am not a feminist or a racist but I do feel women are taken as complainers and I know from people I talk to that other groups on govt medical care seem to be able to get pain meds without a lot of grief.

  18. Thank you so much for addressing this sad but true situation! I have watched my younger sister fight this fight for over 35 years! She is my hero. She has worked hard to have a half way normal life for herself and her family. She worked in bank bookkeeping until a few years ago and pushed herself to go when it seemed physically impossible. Now to see that the only pain relief she has had is being cut way down and possibly cut off is not only an injustice to her and others that struggle with similar things and their families. Thank you once again and please keep us posted.
    Sincerely,
    Libby Loyd

  19. I am Intractable pain and homebound. Doctors never want to see me. My newest Pain Doctor left the hospital and informed everyone but me where he was going and when. They gave me regulations Tylenol after surgery. I have fibromyalgia, Costochronditus., DDD and a few other things.

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