Correcting the record – the general public do not believe doctors would force taper opioids and how forced tapers lead to suicide

The general, healthy, public - friend and family - do not believe that doctors would leave pain untreated, or would force taper medications and make pain WORSE.? Pain patients have zero support.

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No one believes us. Friends and family, healthy people with little exposure to the health system and the ways of doctors, simply do NOT believe that a doctor would behave in a way that is political rather than patient centred.

Friends and family who are healthy do NOT believe that doctors would deny a person with a painful progressive, incurable disease, access to opioid pain medications.

They do not believe that a doctor would, in fact, make a person’s pain worse. And take AWAY a treatment that is both safe and effective.?

They do NOT believe it. ?They WILL not.

I told a few people that I am being force tapered by my pain management doctor.

They made the usual responses.

The first response is always: “Well, just find a new doctor.”

As if this is easy to do. ?

AS if there are that many pain management doctors, you can just walk in, any time.?

AS if there are NOT 6-12 month waiting lists to see a pain management doctor privately, and double that (at least) if you can’t afford to go private, and you must use the public health system.

AS if ANY other doctor will see things differently.

They have all been told, by the government, the health departments, that thy must not prescribe more than 100MME daily.? MME stands for ‘morphine milligram equivalent” and it is based on garbage science.? So much garbage that its hard to call it ‘science’. I’m writing an article about that.?

MME is often called OMEDD in Australia.? Oral morphine equivalent daily dose. A few more syllables to say the same thing.?

If you are in severe pain, and have been for many years, 100MME is NOT a high dose. ?You will have developed tolerance, and this would be a very typical, low dose for someone in long term severe pain.?

Back in 2010 100MME would have been considered an average-to-low dose. Anything over 200MME would be considered medium to high-ish. But doses higher than that were not that uncommon.

And no, those patients did not overdose or become addicted. They lived their lives happily and successfully until they were force tapered after the 2016 CDC opioid prescribing guidelines were released. ??That’s what the evidence shows.

When I explain to my friends that I have seen all the pain doctors in town, and they are all the same, because they are following the same flawed guidelines, they are silent. I can see on their faces that they don’t understand. Or care. I then explain that the doctors have no other options to opioids, because I have done everything else. I still do everything else.

I have done the physiotherapy, the psychotherapy, the pain science education, the hydrotherapy, the meditations, the mindful living, the heathy diet, the daily exercise.? I have tried all the non-opioid pain medications. I have had multiple surgeries and procedures.? I take disease modifying medications to slow down progression of my incurable, painful diseases.

I am a positive person and I have a high pain tolerance. ?

The doctors KNOW that they have nothing more to offer me.

Only opioids. And they are not allowed to do that, so they taper me.

And the friend says: “Well, if the doctor thinks its dangerous, then it must be dangerous. “

And my favourite: “Well, you’re just going to have to find something else.”

How easy that is to say!

There IS nothing else.

Do you know what we have for severe pain?? Opioids. That’s it.? That’s what they are for, and opioids are very good are relieving severe pain.

Why in the world should I not be able to use a meditation for its purpose??

I get the eye roll. And they try to change the subject.

But I’m pissed.? So I say: “Its political. And we need people to understand and help us. “

Silence.

“This kind of pain can happen to anyone. “

Friend makes their excuses and leaves.

NO empathy at all.

None.

TOTAL disbelief.

Zero support.

Some even say: “All you talk about is PAIN”

And they’re sick of hearing about it.

Well, not only is this my life, its my work. My job.? They talk about their jobs constantly too.? Am I interested? Usually not really. But I listen and ask appropriate questions and let them vent about the person in the next cubicle who always brings fish or curry for lunch and eats it at her desk.?

Or how they’ve been passed over for promotion again.

Or how they want to resign but they can’t afford to.

AND HOW LUCKY I AM THAT I DON’T HAVE TO WORK.

Yeh, poverty is great. Let me tell you.

There is zero compassion, because they don’t believe the pain is that bad. They don’t believe doctor would refuse to treat pain if it really WERE that bad.?

They have supreme faith in doctors, and in the health system. Because they have never had to use the health system, and they have only seen one doctor, their GP, when they need a certificate for work.

And these friends are the last very few people who still remember I exist at all. Everyone else has moved on with their life.? They’re too busy to care. And I am too high maintenance. Too negative.? My problems don’t have solutions that you can tie up with a nice, neat bow.? My pain is intractable, my disease is incurable.? This is inherently depressing, and this is not a life that people want a ring side seat to.

Its too uncomfortable for them.

So they fervently believe that doctors would NOT abandon a person in pain. That idea is also too uncomfortable.

They believe that doctors will put the patient first, and always do what is best for the patient.

And yet they force-taper.

The science shows that tapering opioids leads to pain crisis, suicide attempts and completion, and death.

The science shows that no one should be force tapered, ever.

But doctors say they are not ‘force tapering’.

No one can make a doctor prescribe a medication they do not wish to prescribe. Of course.? The doctor has autonomy and agency. And doctors do NOT have to treat any patient.? They get to choose whom they want to treat and whom they do not want to treat.? Also contrary to what the healthy public believe.

Therefore, ?the doctor can say they are not comfortable prescribing this medication in this dosage.

The patient can now accept the taper or find another doctor.

See? The patient has a choice.?? The doctor believes this is ethical and this is NOT forced tapering.

But it is force tapering.

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?It leaves the patient no way to access the pain medicines.

It leaves the patient in terrible pain.

It leaves the patient alone and abandoned. And charged $180 for the privilege.

There is no punishment for patient abandonment.?? It is not considered negligent, although it clearly is.

The patient has no recourse.

It is impossible to find a pain management doctor who will prescribe over 100MME. And while GPs technically do not have to follow the pain management doctors recommendations, they could prescribe whatever opioid dose they want, no GP is going to do that.? It would not be a good career move.? GPs will not override what the pain management doctor has written, because it puts them at risk.

So the patient is screwed.

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No support from friends and family.

No support from doctors and the medical system.

Constantly being told the pain can’t be that bad. That the pain is just an output of the brain and can be changed if you weren’t too lazy or too stupid to ‘do the work’.

Constantly having your pathological pain being conflated with psychosocial factors that amplify pain.

Constantly being demeaned, dismissed, ignored, abandoned. And bullied.

Toe the line or the doctor will take your medications way.

Argue, and the doctor will take your medications away.

Refuse naloxone and the doctor will take you medications way.

Raise your voice or become emotional, and the doctor will take your medications away.

Constantly being maligned and treated like garbage. ?

Constantly being BLAMED, as if this pain is your own fault.

Constantly being made to feel like an annoyance, and inconvenience.

Constantly worrying…before every appointment, wondering will THIS be the appointment when I am force-tapered. When my doctor will join the ignorant masses and jump on the band wagon.

Is today the day when my doctor will abandon me, give me the ‘choice’ between tapering opioids, or losing access to care altogether?

Is today the day when my doctor decides to wilfully, or ignorantly, disregard the mountains of evidence that opioids are safe and effective for long term severe chronic secondary pain and initiate the taper?? ?

Is today the day when my doctor takes away what little semblance of a life I have left.

Is it any wonder that people who live with pain become anxious?

Is it any wonder that people who live with pain get depressed.

Imagine living with constant, severe pain.? Pain that feels like a knife is being inserted between your joints and twisted. Pain that feels like your feet have been doused in petrol and then lit on fire. ??Pain that feels like you are being slowly crushed in a vice grip.? Pain that feels like you are walking on shards of glass, and there are glass fragments inside every joint, sometimes ripping through your skin.? Pain that feels like thousands of biting fire ants, marching on the INSIDE of your body, biting and stinging as they go.?? Pain that feels like molten lava coursing through your veins, burning and obliterating every nerve it touches.? Pain that feels like your hands, hips, knees, are being repeatedly struck with a sledge hammer, again, again, again.? Pain like layers of skin being slowly stripped away with acid.? Pain like barbed wire wrapping your entire body, cutting deeper with every breath, growing ever tighter and tighter.

Yes, that kind of pain.

That, in itself, is enough to cause anxiety, depression, hopelessness.

Now, imagine you had a medication that kept that pain at bay.? Allowed you to life a largely functional life, and the severe pain was brought down to mild to moderate pain, for most of the day.? Imagine this medication allowed you to work, exercise, socialise and live a full life.

Now imagine that medication was taking away.

Imagine how it feels KNOWING a solution exists for this pain. But being denied access to it.

Imagine how frustrated, how powerless, that would make you feel. How anguished, how hopeless, how desperate, how desolate, how beaten down. How betrayed.? How exhausted…with the pain and with the lack of empathy. From everyone.

Now imagine the doctors’ reasons for taking away this medication are not based on science, not based on medicine, not based on facts. But are based on politics and another countries politics at that. ??

Imagine that you have no power, no agency, no voice, and no choice in any of it.

Imagine that you are completely subjugated, completely at the doctor’s mercy.? But the doctor has no mercy. No compassion.? No care. ?

And now, add that friends and family think you are lying, exaggerating that doctors would NOT do this.? That you MUST have done something wrong for a doctor to treat you this way.? And now add that friends and family do not believe you, cannot support you, and agree with the doctors, simply because the doctors must be right. ??Because they wouldn’t’ t do that. ?Because..blind faith.

The person in pain now has no support, not from their doctors, not from their friends and family.? Nothing. No one.

Can you use why force tapering leads to suicide and death?

It’s not JUST the pain.

Its being demeaned and dismissed. Being abandoned.? And being disbelieved and ganged up on.

Left all alone, in agonising pain, day after day, night after interminable night.

Being left.? To suffer.? Alone.

How long could you survive this way?

How long before it becomes too much?

How long before you take the only means to relieve the pain that is left to you?

How long?

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