Living with rheumatoid arthritis and chronic pain – follow up pain management Aug 2020

oxycodone opioid pain medications

Six weeks ago I saw my pain management doctor for review, which was necessary due to the new opioid regulations that came into effect in Australia in June 2, 2020.  These regs have been widely misapplied and used as a reason to force taper some chronic pain patients who are on long term opioid therapy.

I am one of those patients.

My pain management specialist spent less than two minutes with me, laid out a taper schedule and showed me the door.

The taper is unrealistic and unreasonable.  It expects my pain to somehow vanish as I lower my opioid doses.  My doctors are engaging in magical thinking, and that’s the last thing I want or need from my doctors.

My GP refused to discuss my concerns, my only choice was to return to my pain management doctor to essentially plead for optimal pain relief and quality of life.

Yesterday was that appointment.

Again, the appointment was short. Perhaps ten minutes this time. 

He asked how he could help and I told him I was concerned about the taper schedule that I’m on.  I said point blank, though very politely, that I don’t want to taper off my current doses, that I am doing well on this dose, and would like him to reconsider.

He had no recollection of who I am, or that he’d seen me six weeks ago, so he brought up my file, and asked me about the radiofrequency ablation I had with him around a year ago.  I told him it brought little relief and told him (again) about my spinal fusion. 

“Aaaaahhhh…” he says and asks (again) who performed it.  He then searches the file and finds my surgeon’s letter.

He asks if my pain has completely resolved, I tell him no.  That the nerve pain, the worst pain, has mostly resolved, but I still have considerable back pain.  He asks where my worst pain is, and I tell him still mostly my spinal pain, but I have RA joints flaring some days, I have peripheral neuropathy every day and I have abdominal pain attacks that are very severe.

He reads.

He asks (again) about physical therapy. I tell him about my physiotherapy and give him the name of my physiotherapist.  I tell him (again) of my gym workouts, and how hard I have worked to be strong enough to WALK into that gym, let alone workout.  I tell him that I now do four workouts per week, most weeks.  A spin class, two pump classes, and a yoga/pilates based class.  That in the six weeks that I have been doing these exercises my fitness and strength have improved incredibly, and I am working on my flexibility, which is very poor.

He looks at my doses and asks why I am taking so much immediate release oxynorm for breakthough. And I explain (again) that I take one in the morning, that targin on its own does not do enough, fast enough, to tame the pain that I wake up with every morning.  That I then take another an hour before my gym workout, or if I’m going out walking the dog instead  so that I have peak pain relief to workout.  That some days my gym workout will INCREASE my pain in the afternoon. This is to be expected and its short-term pain for long term gain.  But I take an oxynorm to ease that pain. And most days I take another before bed to reduce pain enough to sleep.

He tells me that targin should be enough.  I tell him that it’s not.

He tells me that my exercise routine is fantastic, and to keep it up.  That not enough people exercise, being afraid to exacerbate their pain condition. 

He asks me how my mood is, I tell him I have my down days but I’m not depressed. He asks if I’m seeing a psychologist, I tell him not right now, but I have in the past.  He asks about sleep, I tell him most nights I sleep 6-8 hours and take melatonin to help me sleep. He asks about my home life, I tell him I have three young adults living with my, my two children and my daughter’s best friend.  He asks if I’m working, I tell him I run a part time business and I do advocacy work.

These are the standard things we run though at every appointment.  He is attentive and listens and I feel heard. 

He asks why I take oxynorm and targin together in the mornings. I explain I need that to ‘get going’ for the day. He says the targin should be enough, as it has a component that acts straight away, and an extended release component. He asks if I’ve tried just taking targin, no oxynorm first thing. I tell him yes, and it doesn’t provide the enough relief and its harder for me to get up, get showered and dressed and do my morning stretches and range of motion exercises. 

He asks if I have tried 5mg of oxynorm instead of the 10mg I take now.  I tell him I have, but not for many years. 

He suggests I take a 5mg dose instead of 10mg and I see if that is enough to cover the breakthough.

He starts closing my file, wrapping up the appointment.  Three minutes have elapsed and most of it was running through the same history we run though every time. 

I tell him I will try, but ask him why I need to taper lower, because I am doing very well on my current doses.  My current routine is allowing me to live a relatively active life, and I am afraid of losing all my hard-won gains. I remind him I’ve done this twice before, and I don’t see how this time will be any different.  And it makes me feel like all my hard work in the gym was for nothing.

He says anything…he checks himself…opioids have a lot of negative side effects long term.

He says opioids are not effective long term for chronic pain.

(OH FFS!  How can he keep a straight face saying that to a person for whom opioids clearly ARE safe and effective long term?)

I say (again, super politely) “But they are effective for me. “

He says “it doesn’t MATTER” in a frustrated tone.  This appointment is heading downhill. He says long term its going cause so much damage in my system that it will make life miserable down the track. 

I tell him without opioids my life will be miserable NOW AND down the track. 

I ask him what those long-term side effects are.

He says suppression of my hormones (I have a pituitary tumour and I am not menopausal despite having had my ovaries removed.  My hormones are already pretty messed up.  So this is not really a big concern for me.  I have read up on this and its mostly sex hormones that are suppressed.  I’m in an age group where this matters about zero, and I take hormone therapy anyway.  So, in normal circumstances, I would be allowed to consider these side effects and decide whether I wanted to take that chance. Not with opioids, the decision is made for me.

“It thins out your bones”

I have a disease which is similar to osteopetrosis. My bones are seven times more dense than average.  Thinning my bones is NOT a problem for me.

“it suppresses your immune system”

I’m already on multiple immune suppressive medications.  I’m highly monitored.  With or without opioids I am immunocompromised.  Again, not a problem for me.

“It also causes a phenomenon cause opioid induced hyperalgesia”

I can’t help it, its out of my mouth before my brain could engage.  “that’s not even a proven thing” I say.

Now he IS annoyed and argues that its well proven. (It’s not. Prior to opioid hysteria it was controversial to say the least, with most considering that the few experiments that showed opioid induced hyperalgesia were actually measuring tolerance, not hyperalgesia.  And that IF opioid induced hyperalgesia exists, it is a very, very rare clinical entity.  And that’s if it exists at all.  At the very least much more research needs to be done.

abstract of the above study

“Although opioid-induced hyperalgesia (OIH) is mentioned as a potential cause of opioid dose escalation without adequate analgesia, true evidence in support of this notion is relatively limited. Most studies conducted in the context of acute and experimental pain, which seemingly demonstrated evidence for OIH, actually might have measured other phenomena such as acute opioid withdrawal or tolerance. “

But doctors have been told OIH is real, and they don’t check their facts, they just believe what they are told. 

So now he’s pretty pissed because I’m arguing with him. Still politely.  And he tells me that it is proven fact and I can take his advice or not.  He then moves onto

“there’s no evidence for long term efficacy of opioids”

And I say there aren’t any long-term studies.  I say absence of evidence is not the same as evidence of inefficacy.  Absence of evidence means the research needs to be done.  At this point, the science is unclear but the anecdotal evidence is not. 

He talks over the top of me and tells me that long term opioids WILL cause damage and this is well established.  Especially short acting opioids, which have a very high dependency potential.

I tell him I am dependent, but not addicted.  I am arguing my case because I don’t want to go back to living in 7-8 out of 10 pain, when I know that my opioids can bring me down to 4-6 out of 10 pain.  That I don’t think its fair that because some people get addicted, I am not allowed to have these medications.

He then tells me he wants to support me but he cannot just prescribe what I want or what I think is right.  He says there are strict rules and regulations that apply to him as well, he cannot get around them.  My face must have shown something, because he softened, and told me that I am doing all the right things, and he cannot fault me, and my hard work in the gym is admirable. 

“But we have to be mindful that opioids are not the long term solution”, and he’s sure my GP will be “jumping up and down” about so many short acting opioids onboard and the “health authorities” will be watching. And for now we can explain that because I had a very major surgery and I’m still recovering and rehabbing. But that long term, I have to be weaned off.  He said he knows that the “health authority” will refuse to authorise my opioids if there isn’t a plan in place to taper me off opioids.

He said we can leave things they way they are for three months, in which time I am to try to stick to taking a 5mg oxynorm instead of a 10mg.  At the end of the three months, I need to reduce by 5mg every week.

I ask him what happens if the as I reduce my doses I find I cannot manage the pain, and I can’t keep up my gym routine and life goes back to being miserable on the couch.  I ask if there is an acceptable dose of opioids that I would be allowed to take long term.

He says he will write to my GP and she will prescribe the 5mg capsules, and we will just see how it goes.  He stands to make it clear the appointment is over.

I thank him, and I leave. 

I recorded the consult, as I often do so that I don’t forget the instructions.  It has been just under nine minutes.

Bottom line?

He made it clear that the “health authorities” are monitoring closely and will cut me (and others, I’m sure) off their short acting opioids, and that slow acting opioids will be tapered.  The end goal is to taper all chronic non-cancer patients off opioids. 

This doctor used to be very open to prescribing opioids long term. His attitude has only changed since the new regulations came into effect. 

He trotted out all the reasons that opioids are unsafe long term. Problem being, most of these are not evidence based. They are largely myth, or theories that are not proven. For every study that cites problems, there is another study that counteracts it. 

The truth is there are no long-term studies.  Those studies need to be done, but no one wants to do them, because opioids have been demonised to the extent that everyone “knows” opioids are harmful. 

All the reasons against opioids remind me very much of all the reasons steroids are unsafe long term. But with steroids I was given the information and it was still ultimately my choice as to whether I would accept those risks and side effects. With opioids that decision is taken out of my hands.  Which flies in the face of “patient centred care”.

I have no power.  I am NOT at the centre of my own care.  I have no choices. 

And I’m pretty sure that everyone will be force tapered eventually.  I’ve tried to rally support and get a patient led organisation happening.  No one cares.  It’s frustrating beyond belief. The apathy. The self-absorption – “I’m still able to get my medications, so its not my problem” and the gaslighting “I’m still able to get my medications so you must have done something wrong.”

I am powerless. I am vulnerable.  I will follow his taper plan, I have no choice.  Perhaps his taper will allow me to get to a lower baseline dose. I have to go into this taper plan with a positive attitude, or I will be defeated before I start.

I have three more months, and I will work my ass off in the gym to get stronger.  I have to double down on my physio, because my only hope for pain relief is that improved core strength will reduce my lumbar spine pain.  As for my rheumatoid arthritis flares, I’ll just have to ride those out.  The peripheral neuropathy?  Ride out those bad days too. And the abdominal pain?  Those are very acute, short episodes of excruciating pain.  When they happen I’ll have to deal with it or present to the ED.  Hardly the best use of resources.

I’m starting a new pain journal, I will list how many days per month I am unable to work, go to gym, do domestic tasks, or socialise due to pain.  I’m going to print out a big chart, and make some pretty stickers, to try to have some fun with it. 

Attitude is important, and while I am not happy about this, (NOT happy at all!), anger and anxiety will not help.  My best shot is by tackling this in a positive way, working as hard as I can, following instructions and being a compliant patient, and documenting my progress and my pain. 

And hope for the best.



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