High Impact chronic pain – pain management doctor appointment – October 2022

I saw my pain management doctor today.  I took a witness, because usually I’m in and out in unde five minutes…and he does NOTHING. He utters a few words, tells me there’s nothing else he can do and he shows me the door.

My instinct told me that he would not do this with a witness to his behaviour.  And that was true. He was forced to have a discussion with me.

And he was forced to admit why he will not prescribe the 20mgs of oxycontin extra per day that I am asking for.  The dose I was on prior to June 2020, when the new opioid prescribing guidelines came into effect. 

And he admitted that he would not prescribe over 120mg of oxycodone.  That this was OVER 100MME (miligrams of morphine euiqvalant and he could NOT presdibe that ampont.

I said “You used to prescribe that amount, and my function was much better. “

He said “then  you will always be asking for higher and higher doses”

And I told him this was very unlikely, given that I’d been on that dose for over six years, with out and increase. But, given that I have several progressive, degenerative diseases, that my pain is likely to increase, and that its not tolerance we’re talking about then, but disease progression.

He got really pissy at that.  His anger showed, and he forgot himself for a moment. He lectured me on the dangers of opioids and told me that they were NOT for chronic pain. That only in rare, exceptional circumstances were they prescribed for chronic pain and that I was lucky I was getting what I was getting.

I took this as a thinly veiled threat.  And then he seemed ot remember there was another rperson in the room, and his attitude changed in an instant. Back to his extremely polite, softly spoken persona. 

Whatever. I’ve seen it before.

He ended with “It doesn’t matter how much you complain to me I will not prescribe for you.  The government says that I cannot prescribed more than 100 millgrames of morphine daily.”

And there if was. What I had suspected, he admitted. I count this as a win, because at least he was forced to admit that he is NOT practicin medicing, he is practising politics.

He is also lying, because there is no government law that prevents him (or any doctor) from prescribing more than 100MME. In fact, the guidelines don’t even mention 100MME, let alone say that any dosage over this should not be prescribed.  It must be the US CDC opioid prescribing guidelines he’s thinking of.  But they obviously do NOT apply in Australia.

What the TGA website says in regard to opioid prescribing for chronic pain is:

Clinical need takes priority

The regulatory changes will not lead to a ban on prescribing opioids to any category of patient, if ongoing use is considered to be clinically appropriate. The changes will prompt prescribers to reflect on their opioid prescribing practice, to ensure that, when either initiating or continuing to prescribe an opioid, they have a discussion with their patient and consider whether they will benefit from opioid treatment and how the risks and harms are managed. Medication is only one potential component of a multi-modal plan of pain management, which also takes a person’s social and psychological background into consideration.

Opioids can be used as part of the management of chronic non-cancer pain in circumstances where other pharmacological and non-pharmacological treatment strategies have not been effective, and the impact of poorly controlled pain has been considered. However, there is a known risk of adverse effects and potential for harm and a lack of evidence on the effectiveness of long-term use of opioids for managing many chronic non-cancer pain conditions. Opioids may not offer any additional pain relief compared with non-opioid medications such as paracetamol or NSAIDs (such as ibuprofen), and the risk of harm is higher. The changes to opioid indications align with the latest scientific evidence regarding opioid prescribing and aim to reduce the risk associated with their use while ensuring adequate pain management.

Whether opioids are appropriate for a patient with non-cancer pain will continue to be a clinical decision for the individual prescriber. Prescribers are bound by professional standards and are accountable to an independent regulator. Information for clinicians on opioid analgesic tapering has been developed to assist prescribers in their clinical decision making process. These resources were developed in partnership with pain specialists and healthcare professional stakeholders with input from members of the Opioid Regulatory Communication Committee (ORCC). As opioids are no longer indicated for Chronic Non-Cancer Pain (CNCP) unless in exceptional circumstances, these resources should serve as a guide for cases where the prescriber and patient believe they can collaborate to achieve a reduction in opioid dose.

I googled the Opioid Regulatory Communications Committee. Of course, PainAustralia is a member.  Thanks so much for all your help, PainAustralia, the peak body for people living with pain is actively working against people living with chronic non-cancer pain, and harming the people they are supposed to be advocating FOR, not against.

Irony. Irony everywhere.

The opioid situation has caused me to lose faith in science, and I was very much a devotee of science. When in doubt, scienc.e But now I see that science is run by huands and humans can bastardise anything, including science.  Data is cherry-picked and selectively reported on and voila!  Suddenly the most effective medicine for pain that the world has ever seen is:

Somehow not effective for chronic pain and

Somehow makes pain worse and

Somehow everyone who takes ONE pill becomes an instant addict. And don’t forget overdoses!

The truth? The biggest problem with opioids is constipation. It’s the most common adverse event.  Its easily relieved with a laxiative, maybe even some dietary changes.

Its not serious. I put to you that if constipation from opioids makes you stop them, your pain was not severe enough for opioids to begin with.

Were op[ioids over prescribed?  In the US? Definitely. But the fear mongering and opio-phobia from the US has infected Australia and turned otherwise intelligent people into idiots who can’t read a scientific study and interpret the results.  The evidence is clear – opioids are SAFE and EFFECTIVE for select patients who live with severe chronic non-cancer pain. That is, High Impact Chronic Pain.

Anyway, I am evangelising. Again. You see in the last few years I have done a lot of advocacy work around chronic pain.  I mean a LOT of work.  I did a lot of reading and researching. I learned about the pharmacology of opioids. I read the studies, I learned about the pain neuroscience and nociceptors and how they differ from pain. I learned about pain neuroscience education and what a crock that is!  I learned about nociceptive pain and neuropathic pain.  Acute pain and chronic pain and cancer pain. So many ways that pain is classified and in in the end its all meaningless.

Bottom line?

So many people making lots of money out of people living with severe, daily pain. People who have progressive, painful diseases that happen to be incurable. These people are amongst the most vulnerable in our community. They are not dying, they are living in endless torture.  People who have injuries to nerves and/or the nervous system.  People living with pain that can be explained by medical science, but can’t be cured.  Some who are living with pain that can’t be explained by medical science, but it’s very real. So real that some have chosen suicide over life with constant, severe, pain.

For people like the above, opioids are often the only thing that alleviates some of the pain and creates a window of pain relief.  In that window, life is lived.  People can work, take care of their families, socialise and be active in their communities.  People can function…for a while. For as long as they have pain relief, they can function. Take that pain relief away, and the function falls. And you get people living in isolation and poverty.

Its not a hard concept. Very logical. But to understand the concept you have to believe that the pain is not that severe. 

No doctor who believed that their patient’s pain was severe, and unrelenting, could live with themselves if they failed to treat that pain.

And yet, this happens every day.  Doctors turn a blind eye, or blame ‘the Government’ and pretend that their hands are tied.

Their hands are not tied. I challenge you to find a regulation, law, or even a guideline that says doctors are not able to prescribe opioids at a dosage of more than 100 miligrams of morphine equivalent daily.

I have googled, I can’t find it.  It’s a myth. Its one that doctors use very happily. It take the responsiblitie off of them – I can’t do it, the government says I can’t!

And so they weasel out of the conversation.  They let their patients down and they are derelict in their duty of care. 

Either the doctor believes the pain is severe and intractable, which means they know the pain is unbearable but they are choosing to NOT treat it.  That makes them an asshole.

OR

the doctor doesn’t believe that the pain is severe and intractable…which makes them an asshole.

Either way, doctors are letting people living with severe, daily pain down. They are refusing to treat that pain, and watching as their patients suffer, and sometimes die.   And they don’t even have the gumption to tell their patients the truth – they are not prepared to inconvenience themselves to read the studies, learn the science and treat high impact chronic pain appropriately. Instead, they blame the government and even tell lies that their medical license could be suspended.

This is another thing I see on patient pain groups all the time.  And I’ve lost count of the times someone has told me their doctor has been threatened with losing their licence.  But when I ask for the doctors name, they have forgotten. And then it’s not their doctor, but their doctor’s colleague who was suspended from practice.  One time they did provide the doctors name…and that doctor is still practicing. I checked. 

So there is a lot of misinformation and disinformation on both sides.

That’s one reason I had to stop doing pain patient advocacy work for a while. I needed a break. Some of the people who are active in pain patient groups have been demanding, difficult, and not truthful with me.  The think I exist to pander to their needs.  They spin stories and they drag me into their drama and they are exhausting.

One woman sent me 3,000 word messages daily. Same thing, over and over. It was all about her.  I stopped reading. I told her I could not advocate for her personally.  She started sending abuse.

She’s the worst, but there are many like her.  exhausting, self-absrbed and entitled people.  ON the take, always looking to see what they can get.  Not what they can give.

I started a group, and it grew to well over 100 people.  In that group there is ONE person who is doing advocacy work.  ONE.  The rest are either lurkers or people actively trying to gain from my work.  They all want something. In a group that states clearly is NOT a support group and is for people who want to DO advocacy work and help ourselves and others.  Its NOT for bitching and complaining. Its for organising and strategizing and taking ACTION. 

One person. One person, aside from me. 

There’s a far bigger story to tell there, but not right now. 

So I needed a break. 

But now its time to take up the fight again.  I have ideas, I have plans. I will start doing the work again.

And we will make change. The doctors, the politicians, they are all wrong. Its not so much a conspiracy, but a campaign that relys on the inherent laziness and selfishness of most people.  People, including doctors, only read the headline. The journalists haven’t done their job either.  They are all part of the problem.  Opioids are not only safe and effective, they are life-saving medications and denying them is not only cruel and torturous but might even be negligent. Certainly there are cases in the US where doctors have been sued. Maybe litigation will scare doctors into doing the right thing.  Which is updating their knowledge and skills, get up to date on the science and stop being terrified of opioid propaganda.   Just read the science.  And use SCIENCE to base treatment guidelines upon.  Clearly I’m dreaming, but there ARE doctors who understand the truth about opioids.  We just have to get connected.

Anyhoo…back to the consult.  Ultimately, he offered me CBD oil. I took the script after he assured me that its legal to drive when taking CBD oil. I don’t drive often, but sometimes I DO need to.  I don’t want to give up my driver’s licence yet.

I will try it. I doubt it will help. But I will try.  Who knows? It might be life-chagning.

I have to return in 6 weeks to follow-up and see if its effective.  In the meantime, I’ll get back to work on advocating for the effective treatment of high impact chronic pain.