My name is Neen Monty.
I started this website to bring attention to what has happened and is still happening to chronic pain patients in Australia. More specifically, people who live with high impact chronic pain and rely on long term opioid therapy who are being force-tapered off their safe and effective pain medications to their great harm.
While there are government organisations and not for profits that advocate for pain and chronic pain, none of these organisations are fighting for those living with the most severe pain, those who rely on long term opioid therapy. Opioids have become verboten, and people who are on long term opioid therapy have become persona non grata. Severe chronic pain is being dismissed as something that either does not exist or can be changed with psychological therapies, reassurance, education and exercise. There is a vast misunderstanding of what chronic pain actually IS, and zero understanding of how many different types of chronic pain there are. And why that matters.
Every person with chronic pain is unique and their pain is unique. There is NO ‘one size fits all’ treatment for chronic pain, but that is what is happening in Australia. Public pain clinics do not triage pain causes or severity and herd all people into group pain education courses. Some public clinics demand that a person must taper off their opioid pain medications before being seen. Waiting lists are often in excess of a year in the public system, often much more, and the private system is unaffordable for people who are disabled by pain and unable to work. Safe, effective pain treatments are out of reach because opioids have been demonised, and the very existence of severe, chronic pain has been denied.
The gold standard treatment for chronic pain is multidisciplinary pain management, but the most effective pain medication known to man has been removed from many pain clinic’s treatment offerings. Some practices have signs up in their waiting rooms stating that opioids will not be prescribed. Many pain clinic’s websites state clearly that they will NOT prescribe opioids. Instead, they offer ‘addiction treatment’!
Chronic pain has been conflated with mental illness.
Severe, daily pain has been conflated with discomfort and mild pain.
Long term opioid therapy has been conflated with addiction or opioid use disorder.
And people living with progressive, painful diseases are left to suffer alone. Many become suicidal and can see only one way out of pain.
This is 100% unnecessary. It is immoral and unconscionable. The disability that comes with severe pain is often unnecessary because this pain can be treated. Not to mention that there are few things worse than living with constant, severe pain.
People who have been on stable doses of opioid pain medications for years, or even decades, are being force tapered off and sent to pain science education courses and/or psychologists. Sent to physiotherapy when they can barely walk. And offered anti-epileptics or anti-depressants which are ineffective, inappropriate, and are often far more dangerous than opioids.
This is the state of pain management in Australia in 2023.
What can one person do? I started a group, it’s a small group. And this website. To try and make change. To draw attention to the science, the real science. I know, it seems ridiculous, a small group of people, most of whom are disabled and live in poverty, trying to change the the world of pain. But I hold onto this:
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”Margaret Mead
Its a big job. And progress is slow.
Because I live with severe, daily pain and so does everyone else who is doing this work.
Because I rely on long-term opioid therapy to treat that pain, caused by progressive, incurable disease.
Because I have been force-tapered to a dose that no longer controls my pain and my life has been curtailed. My life has been restricted. Unnecessarily. I have a whole life left unlived because doctors refuse to treat my pain.
I have several goals:
That everyone should KNOW the difference between Chronic Primary Pain vs Chronic Secondary Pain
The most commonly definition of ‘chronic pain’ is ‘pain that persists beyond the normal healing time’.
This is the definition of Chronic Primary Pain, not ALL chronic pain. Chronic Primary Pain is where no structural cause for the pain can be found. This kind of pain is not severe, and not dangerous. Opioids should not be prescribed for this kind of pain.
However, most severe chronic pain is Chronic Secondary Pain, which is chronic pain caused by a disease process, injury, inflammation, or nerve damage. Cancer is chronic secondary pain, as is arthritis, spinal cord injury pain, adhesive arachnoiditis, and many, many more diseases.
Chronic Secondary Pain requires a very different treatment approach to Chronic Primary Pain, but in Australia in 2023, ALL pain is being treated as if it were chronic primary pain.
This means that people who live with serious, progressive, degenerative, painful, incurable diseases are not getting appropriate or effective pain management. Many doctors are force-tapering all people on long term opioid therapy, and people living with severe, daily pain are being abandoned.
See the who’s defition in ICD-11 of chronic pain
There should be NO distinction between ‘chronic cancer pain’ and ‘chronic non-cancer pain’
It is time to ditch the artificial distinction between ‘chronic cancer related pain; and ‘chronic non-cancer related pain’. This was always a false dichotomy – why should one very serious and painful disease be treated safely and appropriately with opioid pain medications, but ALL other serious and very painful diseases NOT be treated with opioids?
The idea is presumably that people with cancer are terminal and therefore it doesn’t matter if they get addicted. But cancer is now very often a chronic disease, and the price of remission is often chronic secondary pain.
Cancer survivors are prescribed opioid pain medications safely but people living with other painful diseases are denied pain management with opioids. Although this too, is starting to change. There are reports of people living with active cancer, terminal diagnoses, being unable to access their opioid pain medications due to opio-phobia!
Cancer is simply Chronic Secondary Pain. This entire classification, this distinction between cancer and non-cancer pain, is a distinction that is predicated on the false belief that opioids are incredibly dangerous and always lead to addiction and overdose. This is a myth, a trope, and demonstrably untrue.
Which leads me to my next goal:
Opioids are safe and effective for the treatment of chronic secondary pain
The catch-cry on opioids has always been ‘there is no evidence that opioids are effective for chronic pain”. This was deliberately deceptive because absence of evidence is NOT evidence of absence.
Additionally, there was evidence, but it was ignored. Now, in 2023, there is a literal mountain of evidence to show that, in well-screened and well-monitored patients, opioids are safe and effective for the long-term treatment of chronic pain.
In Australia opioids are a treatment of last resort, for severe pain not responsive to other treatments. This is as it should be. Every state now has prescription monitoring systems, to prevent doctor shopping and over prescription of opioids (and other medications).
These systems and precautions are enough. GPs have the skills and training to manage severe chronic pain with opioid pain medications, when needed. Thankfully, most people will never experience severe, daily pain, and will never need long term opioid therapy. Those of us who do, are a minority of a minority.
But we matter. Our pain matters. Our lives matter.
Our pain is generally very treatable, with safe and effective medications. We should not be forced to live with unbearable pain when a safe, effective, affordable treatment is available.
Anecdotally, thousands of people have safely been on long term opioid therapy for years, even decades, and have not become addicted or experienced harmful side effects.
Most importantly, there is a huge body of high-quality research that shows that addiction and overdose are rare in chronic pain patients. Yet this research is not being reported on, in the media or in medical/scientific circles. And this evidence was ignored in the most recent Australian Deprescribing Guidelines.
Conversely, tapering opioids, particularly forced tapering, is associated with a significantly increased risk of suicide, overdose and death. It is safer to maintain people on their long-term opioid therapy. But this message is glossed over and the default position of the latest Australian Deprescribing Guidelines is to deprescribe, by force if necessary.
We do NOT have an opioid crisis in Australia nor are we heading for one
The US has an opioid crisis, Australia does not. And never will. Our health system is very different to the US. Opioids have always been well monitored and have always been a treatment of last resort. The addiction and overdose statistics clearly show this.
For example, in 2020, 28 people died due to opioids. Yes, that’s right 28. Infact, according to the Australian Institute of Health and Welfare “benzodiazepines continue to be the largest contributor to drug induced deaths”.
The majority of drug related deaths are due to polypharmacy. That is, multiple medications. Ironically, doctors contribute to polypharmacy deaths by prescribing antidepressants and anticonvulsants, many of which are contraindicated, in an effort to be ‘opioid sparing’.
These combinations of medications are far more dangerous than prescribing an opioid alone.
The truth about ‘the science’
I started my advocacy work because I could not understand how ‘the science’ disagreed so violently with both my own experience and that of most people I know who are living with severe chronic pain.
Through a lot of investigation and hard work I’ve discovered many things. Including:
- That researchers misrepresent their own results and write conclusions that their own data do not support.
- The media, popular, scientific and medical, do NOT report on the studies that show opioids are safe and effective, instead choosing to publish tropes and cherry-picked data for click-bait headlines.
- No one reads the sources. I have read multiple studies’ references, and I very commonly find the referenced study does NOT support the statement being made. But no one checks. There is NO oversight in science, no fact checking. People selectively report the data that suits their narrative, and no one checks for accuracy.
It’s a house of cards, and once you pull one card out, the whole structure falls apart.
You cannot EXPLAIN PAIN away
Explain Pain is the flagship treatment model that has become a pseudo textbook, in Australia at least, for physiotherapists treating pain. When people are referred to physiotherapy, they are now far more likely to be given a lecture, sorry pain science education, instead of exercise therapy. Because physios have been taught that the mere act of explaining how pain works will reduce pain.
This is not now, nor was it ever, true. Nor is there any science or evidence to back this assertion. What there IS is an entire for-profit industry built on this very wrong premise.
Pain science education is an appropriate treatment for primary pain. Even so, it does not reduce pain, in and of itself. It is nothing more and nothing less than one strategy to get people to engage with rehabilitation and physiotherapy. There are many other strategies.
Explain Pain is completely ineffective in severe secondary pain. You cannot treat secondary pain without ALSO addressing the structural problem or disease state that is causing the pain.
The first, and most important step in treating pain is determining what the prevailing causes and influences on the person’s pain are.
In Explain Pain, Drs Butler and Moseley skip over this first and most important step and start with the assumption that all chronic pain is primary pain. But they do not clarify this.
The other things they neglect to mention are:
- Explain Pain was only ever designed to treat chronic primary pain, NOT secondary pain. And even in primary pain, it has a low success rate. You can only diagnose chronic primary pain when you have done a thorough medical workup and excluded any and all structural causes for the pain. Primary pain is a diagnosis of exclusion.
- In ALL studies using Explain Pain, or pain science education, as a treatment, ALL people with chronic secondary pain, that is structural pain, were excluded. Yet they tell the world that this treatment is the best treatment for ALL chronic pain. The result is that people who have severe secondary pain are being given useless treatment that does not address their pain. Very often, people are force tapered off safe ,effective long term opioid therapy, and given pain science education as an alternative!
- ALL the participants in the studies had mild/moderate pain. An average of a ‘4’ or ‘5’ out of ‘10’. Yet they apply this ‘treatment’ to severe pain. Is a ‘4’ out of ‘10’ even pain? Not to me. I’d call a ‘4’ discomfort, not pain. I can work, do a couple of hours in the gym or go for a 5km jog at a ‘4’ or a ‘5’ out of ’10’.
- Explain Pain was only ever designed to treat mild/moderate pain. NOT severe pain. You do NOT treat a broken leg the same way you treat a stubbed toe. And you do NOT treat mild pain the same way you treat severe pain.
This is why it is imperative that all health care professionals know the difference between primary and secondary pain, and how the treatments differ. Currently, physios, psychologists, nurses, pharmacists are treating people with severe, secondary pain with therapies designed for mild/moderate chronic primary pain, leaving people with secondary pain in agony.
Put the ‘Bio’ back in the Biopsychosocial Model
All pain is biopsychosocial. Obviously. But the prevailing theories and treatments of chronic pain have forgotten the ‘bio’ in the biopsychosocial model. Structural chronic pain (chronic secondary pain) is ‘bio’ pain. Psychosocial aspects are thoughts, beliefs, and behaviours around pain. Social aspects include access to health care, housing, quality food, etc.
Successful treatment must address the causes of pain.
You cannot treat ‘bio’ causes of pain with education and psychological treatments, you must also address the underlying structural/physical/biological causes.
Equally, you cannot treat ‘psychosocial’ pain with opioids.
You must know the difference.
All pain is biopsychosocial, but sometimes the predominant driver of chronic pain is disease process, with very little psychosocial factors influencing that pain.
Pain is an output of the brain, but the inputs are just as important. Be they bio, psycho, or social, each factor influencing pain needs to be addressed for successful pain treatment. This is why multidisciplinary care is the gold standard treatment.
Pain is unique to each person. Pain severity is not directly related to the amount of tissue damage. Everyone who’s ever had a paper cut knows that. Pain is influenced by many factors, including your emotions, beliefs, past experiences and more. Two people can have exactly the same injury, but one person may be disabled and the other will be carry on as normal. That’s why each person needs to be thoroughly assessed and most of all listened to.
Instead, many highly educated and intelligent people have been brainwashed into believing that chronic pain is never related to ongoing tissue damage.
Pain patients are stigmatized for claiming our pain is severe and asking for strong pain relief.
We are demonized and accused of drug seeking for asking for a safe, effective treatment.
And we are abandoned and left without healthcare, because of a campaign of misinformation.
This campaign was deliberate and based on flawed US policy and low-quality science, and mostly, NO science at all. All it takes is a few hours of digging into ‘the evidence, and you realise.
All medications have risks and benefits, but with opioids, the risks have been wildly inflated and the benefits falsely diminished. This has been a concerted strategy, a campaign of disinformation, and now there is a mountain of evidence to show that opioids are safe and effective. And tapering opioids is dangerous, leading to overdose, suicidal ideation, and death.
But no one is publishing the evidence. So I’m publishing it here.
Everything you’ve been told about chronic pain and opioids is wrong. And this site is here to demonstrate that.
A few more myths I’m busting and a few more thoughts to finish:
- ‘Addiction’ and ‘dependence’ are not interchangeable terms.
- The lie that opioids are no better than nsaids for pain was based on one flawed study, and has been thoroughly discredited, but the myth persists. See the sections about ‘the science’ above.
- There is NO place for dose ceilings in pain management. There is no science behind 100MME, it was pulled out of the air, with no evidence behind it.
- Opioid induced hyperalgesia (OIH) is not a recognized clinical entity. Most pain researchers and pain doctors see it as a laboratory phenomenon. And even if it did occur clinically, OIH can be successfully treated with opioid rotation. Tapering off all opioids is not required.
- While some people do experience very unpleasant withdrawal symptoms, this is not true for everyone. ‘Withdrawal’ symptoms have been elevated to being the worst pain a person can experience and avoiding these symptoms is give as the reason why people don’t want to taper off opioids. This is untrue. People do not want to taper off opioids because their pain returns. When people taper off opioids, the most common outcome is increased pain. This is NOT withdrawal, it is the return of pain related to their underlying pain condition that opioids were successfully treating.
- It is a lie that opioids can be discontinued with no increase in pain. This was based on one flawed study and has been thoroughly discredited…see ‘the science’ above.
- Most people do NOT experience euphoria when they consume opioids. Opioids do NOT get most people ‘high’. This is a myth.
- Opioids are a treatment for severe pain, be that pain chronic or acute. Opioids are most often the ONLY treatment that is effective for severe pain. Withholding this treatment is not practicing evidence-based medicine. It is not practicing medicine at all. It is practicing politics and myth building.
- Australia does not now, nor is it heading for, and ‘opioid crisis’ similar to that in the US. What we ARE heading for is a crisis of untreated and undertreated pain and an epidemic of pain patient suicides. Just as happened in the US.
- Australia is blindly copying disastrous US policy with the most recent Deprescribing Guidelines, even while the US reverses course and the CDC admits its wrongs. The CDC has repealed its disastrous 2016 opioid prescribing guidelines and put out press releases stating the guidelines were misinterpreted and misapplied. They replaced these guidelines in 2022 have made opioids for chronic pain more accessible. They have removed all dose ceilings, and restrictions on durations. The CDC has also admitted that it inflated the overdose and death statistics, and the opioid epidemic was never about prescription opioids. The US opioid crisis is most certainly about illicit opioids, not prescription opioids and not pain patients.
There are worse things than living with constant severe pain, but not many. And knowing that a safe, effective treatment exists that reduces pain and improves function and quality of life is available, but you are being denied that treatment due to myth and misinformation, is pure torture.
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