Living with RA (and other painful conditions) and my Pain Management Doctor

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Whelp today I had my long-awaited appointment with my pain management doctor.  Since June 1st, and the change in the regulations in Australia surrounding opioid therapy, my GP has been ‘handing off’ my pain management to the pain management specialist.  She has made it clear that she can only prescribe opioids IF he approves, and only at the dose that he approves. 

After my three-level spinal fusion, she has aggressively tapered my opioids to a point where they are no longer controlling my pain.  Pain is her secondary concern, however.  Her primary goal is to taper me off opioids, as per the Australian Government’s directive to all GPs. 

For a brief one-month period, I was taking a 20mg Targin morning and night, with oxynorm for breakthrough pain, and my pain was controlled.  I slept at night.  I was able to exercise during the day.  I was able to function at a higher level, e.g. I could do a spin class AND get groceries in the same day.  I was living, not existing.  Not possible when my pain is uncontrolled.

And then as I dropped to the lower dose, it all unravelled. 

I no longer sleep, I wake up every night somewhere between midnight and 3am, in terrible pain.  I then get up, come downstairs to the couch, I do some stretches, I take more pain medication, I do a few laps around the dining table.  And eventually, around 5am, I go back to sleep for another hour or two. 

It’s not a good schedule. I much preferred it when I went to bed at 9pm and I slept through until 5 or even 6am most days.  But without pain relief, sleep is impossible.  And without good sleep, everything else tends to slide.

Doctors know this. But they only acknowledge it when it suits them.  And it didn’t suit him to agree that it was pain that was waking me up.  He pointed to my melatonin prescription and told me I’ve had long term problems with sleep, and am I sure that its really pain that’s the problem?

Uh…yeah.  Pain IS the problem. I’m sure.  Completely sure.

But I’m getting ahead of myself.  Let’s go back to the beginning.

I walked into the appointment, stiff legged and slow.  He asked how I’d been. I said a lot has happened and explained my multilevel spinal fusion. I described it as a success, as I am now doing my physical therapy daily, but also doing spin classes and resistance training in the gym. 

He asked if I had back pain or pain down my legs as well. I told him the pain down my legs was the worst I’d ever experienced. And while I still have some pain now, it is much improved since the spinal fusion surgery.  I described the numb areas, and the areas where I have reduced sensation, and the areas the feel painful even with a light touch. 

He didn’t say much.

I told him since the surgery my GP has been tapering me off my opioids, and I am now at a dose that is too low to manage my pain.  I told him my doses, and he told me AGAIN that immediate release oxycodone was only for flares, not for daily use.  I told him I used them for specific situations, for example I used one tablet to get me going in the morning, and another to reduce the pain enough so that I can go to my gym classes. And, depending on the day, I might take one or two more in the afternoon and evening.  I explained that doing exercise classes increased my pain levels, but it was worthwhile for the multiple benefits it provides.

He didn’t say much again, so I kept talking.  I know that’s a technique that police interrogators use…keep quiet and force the other person to keep talking to fill the silence. Eventually they’ll incriminate themselves.  I was starting to feel like that was the goal here.

I told him I still have rheumatoid arthritis pain, and that on normal days, I usually took two oxynorm, and on flare days I often took more. 

I described the nerve pain, peripheral neuropathy,  and that it is creeping up my legs and arms, and getting more intense.  But it also comes and goes, it seems to flare and remit. 

I told him about a new pain I’ve been experiencing, only for the last week.  I feel like my muscles have been clenched for hours, and I can’t unclench them.  My legs and buttocks, and to a lessor extent, my arms, feel heavy and leaden, and rigid. Its hard to walk, and I feel like I can’t move my legs fast enough.  I’m constantly trying to stretch them out to relieve the stiff, fatigued, dull achy feeling.  It’s not severe, but it’s definitely uncomfortable and by the end of the day I’ve had enough.

He didn’t acknowledge anything I said or ask any questions about my pain, old or new.  Instead he asked “How’s your mood?”

I said fine, worse on days where pain is high but I am no longer depressed.

He asked if I am still working.  I told him no, COVID-19 has destroyed my part time business.

He asked who I live with, I told him my two kids plus my daughter’s best friend has moved in with us. 

He has asked ALL these questions before.  He should know these things.

And then he said he was going to authorise continued targin at 15mg for three months.  That in the first month I am to limit myself to THREE oxynorm for breakthrough pain.   The second month I must limit myself to TWO oxynorm for breakthrough pain. And the third month I can only have ONE oxynorm a day.

I said “regardless of my pain levels?”

He ignored me. 

He said that after that we would lower the targin to 10mg, and I may have three oxynorm again, then two and so on, and in this way we would taper me off my opioids.

I repeated that I’d just tried to do that with my GP, and I am now at a dose of medication that is TOO LOW to control my pain.  So how is it going to be any different? 

Silence.

I asked him if he could up the Targin to 20mg at least, to the dose that did control my pain previously.   He stopped, contemplated, and then agreed. 

And reiterated that the goal was to taper off the opioids and that I am to continue with the exercise, and meditation and mindfulness.  And to think of getting off opioids as a positive thing.

Getting off opioids would be a positive thing if I didn’t have daily, severe pain.  While he pain persists, having my opioids taken away cannot be a positive thing.

The “addiction” narrative that has been pushed by organisations like Pain Australia who are supposed to be advocating FOR people living with persistent pain, has been amplified to the point that even pain management doctors, who absolutely DO know that opioids are a valid, safe therapy for the right pain patient, even pain management doctors are treating dependence as if it were the same as addiction and ALL opioids are bad.  The government and Pain Australia are trying to remove opioids from the pain management toolbox, and it disgusts me deeply.  Because I (and many others) am now dependent on doctors, whom my GP openly told me have bigger issues to fight the government on, to prescribe opioids and go against the grain.  And risk being sanctioned, or having restrictions placed on their medical licence.

Very few GPs are going to do this. I was hoping that my pain management specialist would realise that I require opioid pain relief for quality of life, and because I am a compliant patient and I use opioids appropriately, and I also use many other pain relief modalities (exercise, physical therapy, psychology, mindfulness and meditation) that he would realise I am doing well on these medications, and continue to prescribe.

But no.  I am going to have to fight.  And I will, because its my quality of life that’s at stake. I don’t want to spend my life lying on a couch.  Opioids mean I don’t have to.

But I didn’t argue.  If I argue, I get labelled as “difficult” or “non-compliant” or worst – an addict!  Show signs of addiction and treatment will be terminated.

He said he would prescribe 10mg of Endep (amiltriptatline) which I refuse to take as it causes weight gain.  He said it wouldn’t cause weight gain. I said it would, and it did!  I was taking it four months ago for a few short weeks.  IN that time it stacked 6 kgs on me, 4kgs of which took the next three months to get back off.  And that was possible only after I stopped the amiltriptaline.

He repeated it would not cause weight gain.  He said he would write to my GP and she would arrange the scripts. And then:

“You need to go to your rheumatologist to control your arthritis pain and you need to go to your neurologist to control your nerve pain.”

Ha.  As simple as that.  Just go to those other doctors and tell them its their problem. Way to pass the buck!  He’s a PAIN specialist.  It’s HIS job to treat pain. You can bet if I told my rheumatologist that it was up to him to manage my pain he would tell me in no uncertain terms to get out of his office.  And go see my pain management physician.  Or my GP.  Basically anyone but him.  I have no doubt my neurologist would say same.

He then rose to give me the cue that the appointment was over.

From walking in to walking out, was less than five minutes.  Probably less than three minutes, if you timed it.

He didn’t listen to my symptoms. He certainly didn’t examine me, or check my range of motion, or the strength of my legs post-surgery.  He didn’t care that I have a new kind of pain, and increased neuropathy.  He didn’t care that my rheumatoid arthritis is flaring more lately and therefore I have needed more pain medication.  He didn’t care that my exercise regime does increase my pain levels, but the benefits make it far preferable to not exercising and having less pain.

None of it mattered.

Just as with my GP, the goal posts have shifted.  Pain management is NO LONGER about controlling my pain and improving my quality of life, its about tapering off opioids. 

He refused to engage on any issue I raised, didn’t answer questions, the most important one of all being “Why do I have to be tapered off an effective medication to be put on an ineffective medication that has unacceptable side effects?”

Why indeed.  Perhaps Pain Australia can answer that. 

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