Living with high impact chronic pain and pain management – when your GP is sick

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The general public has no idea how vulnerable people who rely on opioid pain relieving medicines are now that opioid hysteria has taken hold in Australia.  GPs have been sent letters, professional organisations are warning about the “dangers” of long term opioid prescribing, and these directives are not based on the evidence, not based on the science.

It’s blindly following the agenda the US started down five years ago with the CDCs 2016 opioid guidelines.  What happened in the US was chronic pain patients were force tapered, or cut off cold turkey, or forced to sign contracts stating they were addicts and go into addiction programs, and in many cases refused primary care.  The suicide rate amongst the chronic pain community sky rocketed. 

The same is now happening in Australia.  All of it.  Rather than seeing the mistakes the US made (many in the US are starting to realise what an horrible injustice this was and some doctors are trying to turn it around) Australia is following down the misguided path.

I switched GPs when my GP of eight years started force tapering me.  The GP I switched to promosed to prescribe my opioids for a few months while she “got to know me”.

The second month I saw her she started force tapering me.  I am beyond disappointed…I feel betrayed.  She lied to me.  How can we have a relationship based on trust when the first thing she did was betray the trust I put in her?

I discussed it with her, and explained how and why I use opioids. She demanded I return to my pain management specialist, which is an expensive and time consuming affair, but of course I did as she asked.   Not that I had a choice.  My pain doctor decided to try a new regimin – instead of 20mg targin 12 hoursly and 2-3 oxynorm 10mg for breakthrough pain daily we switched to 15mg of targin 8 hourly, because targin does not last 12 hours for me, it only lasts 8 hours or so. This is a well-known phenomena, documented in the literature. Every patient metabolises pain medication (all medications) at different rates.  I’m a fast metaboliser. 

The hope was that with round the clock pain relief from the slow release oxycodone (targin) I would hopefully need less breakthrough medication. 

Pain doctors always want to keep p[eole on slow release formulations because they believe that it is less likely to cause addiction.  The science is slowly showing that this is NOT true, and that addiction actually occurs more often with slow release forumulations.  So his entire treatment plan is based on outdated thinking.  But there;s nothing I can do about that…he’s the specialist, I’m the patient. IF I argue he will stop prescribing altogether.

See how vulnerable I am?  I am completely dependent on docrors prescribing appropriate pain relief to have any kind of functional life.  Therefore I am always polite, I will debate a treatment plan but I will never raise my voice, never get visibly upset, because these will all be red flags for addiction and opioid use disorder.

There is no winning here. The only way to behave is evenly and reasonably.  And go along with whatever treatment plan they decide.

Having been doing this pain management routine for many years now, around eight years I think, I am experienced enough to discuss what to do if the new regimen is worse not better.

My pain doctor said he would write to my GP and tell her that she may be more flexible with her prescribing, its not necessary for me to return to him every month to change my treatment plan, he said he would give her permission to return my dose to the previous regimen and increase if necessary. 

Given that assurance I readily agreed to trying the new plan.

Within a week I knew the new regimen wasn’t working.  !5mg is NOT enough to get on top of my pain.  I wake up feeling like I have been beaten up overnight.  Every morning the pain is severe, the first thing I’m aware of when I open my eyes.  Its not a nice way to live.  Lying still in bed causes me to seize up and increases my pain levels. Being still is the worst thing for my chronic pain.  

The first thing I do in the morning is take my pain medications and wait for the pain to reduce enough for me to start my day. To start moving. Once I start moving everything starts to improve. 

Motion is lotion and all those cliches.

But if the pain doesn’t reduce enough for me to get moving, the pain increases exponentially. If I cant  move I because more stiff, lose mobility, fatigue increases dramatically, evertying falls apart.

15mg of targin is not enough for me to get moving.  I need 20mg plus 10mg of oxynorm to start my day.

I have tried 20mg with 5mg, 15mg with 10mg, 15mg with 5mg.  NONE of these options are effective, which makes the entire regimen pointless. 

Undertreating pain is the same as NOT treating pain. What is the point of taking a medication at a dose that is not effective?  Complete waste of time.  I tried for a week to see if I would adapt.  Doctors always say “give it time” because they think that the pain is all in my head and that once I relax that the pain will magically go away.

While I agree that stress makes pain worse, stress pays very little part in my baseline pain.  I meditate. I use CBT strategies.  I have a lot of tools in my pain management toolbox but without opioids NONE of those tools are effective.

So after a week had gone by I made an appointment to see my GP. It was a week of hell and it was long enough. I’ve done this taper 4 times already, I know it won’t get better from here.

On the day of the appointment I receivd a call to say my GP is sick.  I couldn’t see another doctor because there’s no way another doctor will prescribe my current opioids, let alone look over my history and switch me back ot my previous regime. 

So I said I’d wait another week.  I wasn’t happy, but again, no other viable option.

Today was the day for my appintmnet .. It has been two weeks since I saw her last.  The phone rigns…she is still sick.

FUCK!

I have no choice but to see a completely new doctor. One who is very likely anti-opioids, because most doctors are now anti-opioids, having read the propaganda.  Easiest way to fix the problem for most doctors is to just refuse to prescribe opioids at all. 

Its derelict in their duty of care, and in my opinion, negligent, but that’s what they decide to do.

I am now in a terrible position.  Completely vulnerable to a doctor whom I’ve never met. 

All my records will be there in front of her, but there is nothing I can do if she decides to NOT prescribe.

When I sawy my regular GP last, she said see had not received any letter from mt pain management doctor.   SO I called my pain managnemt doctor to find out if the letter has been sent by now.  I was told it was sent a full ten days before I saw my GP. It SHOULD have been on file. 

Either she lied to me, or it had been misfiled or something. Hmmmm.

This morning when I took my morning meds, I realised I was down to my last dose.  Completely out.  I looked at the box and realise that at my last appointment she short scripted me.  Our agreement was that I would try to stick to no more than 4 5mg oxynorms daily.  I have been failing at that since she started this taper.  Its not enough for me to function. 

Instead of prescribe my usual 2.5 doses daily (which she has been doing for the last three months while she lectures me on reducing my dose) she only prescribed enough for 2 doses daily.

I have been off my rheumatoid arthritis medication for seven weeks.  I started rinvoq a week ago but its far too soon to know if it will be effective.  My pain levels have been much higher since I have been off my medications for RA ,and she is WELL AWARE of that. Yet she expects me to reduce my dose NOW.

This is completely unreasonable.  Magical thinking. But hey, it doesn’t hurt her. Its my life she’s ruining.

The last two weeks, on the lower dose, have been hell.  I haven’t been to the gym. I haven’t been able to jog around the pond…I was doing two laps of walk/jogging before I stopped my RA meds and before she reduced my pain medication doses.  Now I can barely walk TO the pond, let alone jog around it. 

I have explained ALL of this to her, and still she reduced my doses. She didn’t even have the decency to tell me that’s what she was doing. 

Given my increased pain, the 15mg of targin being ineffective, I’ve been taking 3 or 4 doses daily. And so I have run out of pain medications completely. 

I have none left. 

This is going to be a major red flag for this stranger doctor I’m seeing today.  Runing out of meds early is a MAJOR red flag.

Even though I’m being force tapered, even though I have documented reasons for my pain levels being higher.  There is no way she’s going to prescribe my old dose and allow me to get through the month.   No way.

She is going to look at me and see an addict because that’s what the marketing materials the health department has sent to GPs says.  Its’ easy for her to believe that and it will be a simple excuse for her to refuse to prescribe.

I’m screwed. 

It’s the Tuesday after Easter. I spent most of my Easter lying in bed or on the couch. I was barely functional. I took the extra pain medications to cope with terrible pain.  I took doses so that I could get groceries.  So that I could enjoy an easter breakfast with my kids. So that I could do an easter egg hunt for the kids. 

And my easter was still miserable.  I had to use extra immediate release oxycodone because the 15mg of targin is not enough to relieve my daily pain.  I had to take the extra doses to cope, to get through the last two weeks.

My doses are NOT excessive. They aren’t even high.

Added to my RA I have increased spinal pain. I had three levels of my spine fused just over a year ago.  My surgeon was very happy that I’d halved my pain medications thanks to his skilled surgery.  He thought this was an excellent results, particularly as I was going to gym 5 days a week and jogging again.  He was happy with my opioid use, he realised it was practical and functional and allowed me an active life.

A spinal fusion is not a cure for all pain. It reduced my pain radically but I will always have lumbar spine pain, and some days its severe. It used to be excruciating every single day…so what I’m living with now is a major improvement. The surgery was a success.  It was unrealistic to expect to be pain free. 

Three level spinal fusions are rare.  Some neurosurgeons will never perform them.  It was indicated in my case because of the degree of degeneration in my lumbar spine – sppndylolisthesis, spndylolosis, stenosis impinging on myultiple nerves causing incomplete cauda equina.  MY left leg is still partially paralysed, but I have more function than I used to.  My spine however is ontinuing to degenerate.  I bought a few years (no one knows how many years) with the spinal fusion.

But spinal fusion is NOT a cure.  It’s a treatment.  The level above my fusion will fail at some point and then permanent paralysis and permanent wheelchair use will be my only option.

So I make the most of my function now. I want to jog, go to gym, USE my body.  Its possible one day I won’t be able to do those things, so I appreciate them now, while I can. 

I also have peripheral neuropathy.  It has been much worse for the last eight months or so. I’ve been back to my neurologist and he prescribed medicinal cannabis.  My GP told me not to fill that script because she didn’t think it would help and it would just be adding another drug.  It was clear that she did not approve and I felt she might discharge me as a patient if I went ahead with it.

So I agreed to not start that script.  And still, she short scripted me. I did everything she asked and agreed to everything she suggested. And she insists on force tapering. 

This is not fair.

So today I am seeing a new doctor in four hours.  A new doctor who will see me as a difficult consult, an addict who is refusing to stick to their prescribed dose.

I must not get upset. I must not get angry. These are red flags.

I must not argue. This too is a red flag. 

I called my pain management doctor and asked if his letter had been sent to my GP, because my GP was questioning my treatment plan.  The receptionist said she’d sent the letter out four weeks ago. I asked for a copy…she wavered…I begged. She agreed.

So here I am.  Vulnerable. Relying on the kindness of a receptionist.  Powerless. Discriminated against on the basis of myths and outdated ideas of what “addiction” looks like. 

I hope that letter says what my pain management doctor told me it would say. My only hope is that letter convinces this brand newbie GP that its OK to prescribe me enough pain medication to get through the next two weeks.

In just over two weeks I have booked two nights in Sydney for the Chicklet’s birthday.  I promised her that.  If I don’t get my pain medications I will not be able to drive us to Sydney. I will not be able to go. As it is I will have to spend most of the time in the hotel, I won’t be able to participate in the birthday shopping spree, but at least I will be there.

If I don’t get my pain medications I will not be able to do the three hour drive.  The chicklet will not be able to drive herself.  The Waif can’t drive. 

The chicklet’s birthday will be ruined. Again. For the fourth year running.

All because doctors don’t like opioids. 

The letter just arrived in my inbox.

It does not advise my GP that she has flexibility in prescribing as he told me he would write.

He refers to me being on “high dose” opioids. Even at my previous dose I am NOT on high dose opioids.  I was taking a daily average amount of 70mg oxycodone.  This is equivalent to 100mg of morphine.

The “line” doctors want patients under is 90 milligram morphine equivalent (MME).  This dose was the dose that the CDC recommended back in 2016. Where THEY got that dose from no one seems to know. Its not based on science.

I am 10mg over that daily dose. That hardly makes my doses excessive. I can function on 100MME daily.  For 10MME they are destroying my life. 

This is not fair. This is not evidence based.  This is not individualised care, let alone quality care. 

And there’s nothing I can do.

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