Living with RA (and other painful diseases) and pain management in the age of opioid hysteria

multilevel spinal fusion

Four weeks ago I saw my GP for my opioid scripts (Targin and oxynorm) and she was determined to taper me off my opioid pain medications.  I had been reviewed by a pain management specialist, but I wasn’t sure what his letter would say.  I had managed to convince both of them to give me one more month of 20mg of targin (morning and night), rather than tapering me down to 15mg. 

I am very much against being tapered below 20mg because I have already twice dropped below that dose and each time the result is the same:

  • Unable to sleep more than 4 hours a night, waking due to pain.
  • Unable to do my physical therapy or attend my gym classes.
  • Unable to do my  usual 1.5km walk with my dog, something I love to do.
  • Unable to do more than one thing a day…e.g. grocery shop or do the washing.  NOT both on the same day.

At the 20mg dose I can do all of those things and keep my part time busines running, do some health advocacy work, and take care of my family of three young adults and two dogs.

In short, my life is much better at 20mg than it is at 15mg.

Since the new opioid prescribing guidelines were introduced on the 2nd of June, tapering people off opioids has been the goal.  I’m luckier than some, who have been force tapered or even cut off cold turkey, left with no healthcare provider if they argue.

Doctors do not want to prescribe opioids anymore because the government is applying pressure and doctors fear their medical licenses will be restricted.

Anyway, that’s the history.

Today was this month’s opioid script appointment, the appointment at which my GP had said she wanted to reduce me to 15mg.  I was well armed with proof that I am doing better at 20mg: my apple watch which shows that I am meeting my standing and moving goals every day, and my exercise goals at least four days a week.  I was ready to explain to her that my sleeping is better, my function is better and of course my pain levels are much improved.  But I was anxious because ultimately if she and my pain management doctor decide to force taper me, I have no choice and no power in this equation.

She opened with the instructions from my pain management doctor – he wants me to reduce my oxynorm for breakthrough pain, and only take targin which is a slow release medication.

I explained that I use my breakthrough meds to my strategic advantage. They serve a purpose and I take them very mindfully and purposefully.

She cut me off and told me that immediate release oxycodone is not recommended for chronic pain and that I should only be taking oxynorm for breakthrough pain on very rare occasions. 

I explained (again) that I take a targin (slow release)in the morning, along with an oxynorm (immediate release) to get me going in the morning, to reduce my pain fast and allow me to do my morning stretches and light range of motion exercises.  To literally help me get moving.  Which we all know is essential with rheumatoid arthritis, and the hardest thing early in the morning.  Then, I often take another oxynorm around an hour before my lunchtime gym class, so that my pain is at its lowest so that I can exercise to my best advantage. 

Some days that exercise class puts me in more pain, and I take a third oxynorm mid-afternoon.  Some days I take another before bed, to reduce the pain enough so that I can sleep. 

I never take more than four oxynorm a day, if I need more than four I accept that it’s a knock-down day and I need to rest in bed and wait the pain out.

I never take an oxynorm without thinking. I never take an oxynorm unless there is a purpose – sleep, exercise, an appointment I have to attend.  I never take an oxynorm for any reason other than to reduce my pain. 

I never self-medicate emotional pain or depression or anxiety with oxycodone.  I don’t get any kind of ‘high’ from my pain medications.

I presented a very logical case…and she didn’t listen.

She said the letter says that this month I may have up to three oxynorm per day.  That next month I will be allowed two oxynorm daily, the month after one, the month after that NONE.  The month after THAT my Targin will be reduced to 15mg, and I will be allowed four oxynorm again, to cope with the drop. And after that we will continue to taper down, month by month, until I am off all opioid medications.  All very clinical and scientific and cold.

I couldn’t help it I said “It doesn’t work like that!”

It was out of my mouth before I knew it.  I was so frustrated!  Pain medicine doctors read some theory that another pain medicine specialist has designed, that has NO basis in the real world, or how pain patients actually use their medications, and it becomes the standard.  Yes, that schedule makes perfect sense as a taper to prevent possible withdrawal symptoms.  It makes absolutely NO sense in the context of pain management!

Does my pain management doctor think my pain is just going to magically evaporate as he reduces my opioid pain medications?  Does he think my pain isn’t real?  Or does he think I just have to ‘learn to live with it’ as so many others have been told. 

His ‘plan’ is about reducing my opioid medication in a slow and safe way.  It does NOT address the reason I started taking opioids in the first place – I am in PAIN. That pain is severe and disabling without opioid pain medication at a dose that addresses it.  If my pain were intractable and untreatable I would have to learn to live with it. BUT knowing that there is a medication that controls my pain at least to the point where I can live a life of basic function, if not normal function, and then have that medication DENIED is unbearable.  It’s cruelty.  It’s torture.

It’s also incredibly ignorant.  It’s fear based not evidence based.  The government has NO place in the consult room. Pain management should be between the GP and the patient, bringing in a pain management specialist where appropriate.

I use my medication to reduce my pain and improve my function.  Pain medication is tool, like many other tools that I use (physiotherapy, exercise, hydrotherapy, meditiation).  I have been using my pain medication this way for around six years. I am having no negative side-effects.  The medication is pure benefit for me, no downsides except the government intervention.

She scowled a little, and repeated that it was his plan and she needed to follow his directions.  She then called for the authority and had a long conversation with the person on the other end. I couldn’t hear them, but it was clearly an adversarial conversation.  She managed to get the authority, but there had been some debate.

I asked her about it, she said that because a few months ago I had increased my oxynorm use, they were scrutinising my file.  They had me flagged as using too much pain medication, more than was authorised.  Red flag for an addict.

I almost shouted “Yes, because I had three levels of my lumbar spine FUSED!”,

Which is well accepted as one of the most painful surgeries and most painful (and slow) recoveries of any surgical procedure.  Of course I temporarily increased my oxycodone dose.  Did they not also see how I quickly reduced that dose again, and have tapered to much lower than before the surgery?

She said they don’t look at that, they are no longer only looking at the previous month but now looking at the preceding six months and looking for indicators of opioid use disorder.  Any increased use and they red flag the patient who is using more than the usual prescription. No investigation, no chance to explain why that might be the case.  Just a red flag.  An algorithm.  Fabulous.

So I have a black mark against me because I had an extremely painful eight hour surgery with a 12 month recovery period, to reduce my spinal pain.  I was doing exactly what they recommend – try to treat the root cause of the pain and not just rely on opioids.  And I got red flagged for it!

My GP was able to get the script, but she said for my own sake, I better not go over the three oxynorm per day or ask for a higher dose of any opioid, or come for my script even a day early.

She acknowledged that this wasn’t fair, and that I had good reason for using more pain medication in the six weeks after my spinal fusion.  She said she understood, and we’d just see what happens next month.  She would explain the reasons if they queried my use again.

I know she was on my side, about this at least, but the pressure from the government is creating tension between us.  She has been my GP for many years, and neither one of us need the government applying pressure or telling her how to practice medicine.

She asked again which pain was the worst pain. I told her my lumbar spine pain is still the worst day to day pain.  And added that some days I still have bad rheumatoid arthritis flares, and on those days I usually take my four oxynorm.  I also have peripheral neuropathy that ranges from mild to intense pain, depending on the day.

My rheumatoid arthritis is better controlled that it has ever been.  I have flares, but only have bad RA pain 1-2 days a week.  And this is decreasing.  Baricitinib is doing an incredible job of controlling my RA, I’m also on low dose of methotrexate (10mg) which is largely to prevent my body from making antibodies to the baricitinib.

I saw my rheumatologist last week, and it was awesome to have a quick appointment.  My rheumatology appointments are usually miserable affairs where my rheumatologist is frustrated at my latest failure, or my poor survey results, and he has even suggested that my RA diagnosis is bogus and that I have some sort of psychosomatic pain condition.  Patient blaming.  The doctor version of victim blaming.

Last time I was on baricitinib, it sent my liver enzymes up to 20 times normal.  I had an MRI of my liver which showed inflammation, I had hepatitis for a few months, and it resolved after a few months off the medication.  This time my liver is doing fine, which everyone is happily shocked by.

No one expected that.  BUT my kidneys function is poorer, I have stage 2 kidney disease. Which is nothing to be alarmed about, but I do need to be aware of my kidney health.  My cholesterol is also high now, just one point under the treatable range.  She wanted to prescribe a statin, but I asked her for three months to try and lower my cholesterol with diet and exercise.  She agreed, we’ll see what the numbers are like in three months.  The kidney function and the cholesterol are side effects of the baricitinib.

Point is, there is nothing more I can do for my rheumatoid arthritis inflammation and pain.  I can’t increase my methotrexate lest it cause my liver enzymes to rise.  I am already taking hydroxychloroquine and still a small amount of corticosteroid.  There are no more options.

My degenerative spinal disease is related to my rare bone disease, and my spine will continue to deteriorate. The spinal fusion has bought me a few years and I am doing all I can to improve my core strength and posture, to try and slow down the inevitable degeneration.  The average recovery time from my multilevel spinal fusion is 12 months and I’m at the six-month mark now.  Its very possible I will get a little more pain relief as my core strength improves.   Its going to take a lot of hard work in the gym to do that though, and the pain is going to get worse before it gets better. I’ve just started pilates based work to strengthen my core, and it causes PAIN all in caps after each session. It is HARD work.  It HURTS.  But it’s the work I need to do.

And I need my pain medications so that I can do this gym work.  It’s very simple logic, but medical professionals still have the impression that people who take opioids are addicted, are lazy and just want to take the ‘easy’ way out, and don’t want to treat their disease.

NONE of that is true.  Certainly not of me.  I work incredibly hard for every ounce of function.  And I have a lot of character flaws, but ‘lazy’ isn’t one of them. 

So bottom line?  Despite toeing the line and doing everything right, I am still on a forced taper.  This is against my will, although I didn’t dare argue too hard, because I need to maintain a good relationship with my GP.

I feel confident I can keep to three oxynorm daily this month, therefore I am not arguing right now.  I very much doubt I can keep to two oxynorm daily, as will be next months quota.  So sometime next month I will have a problem. 

I will of course try to keep to two oxynorm per day, but I will likely wind up presenting for pain medications early. Which as we all know is one of the red flags for addiction.

Except its NOT when a patient is on a forced taper and is only trying to live their best life.

As I said to my GP, its not about pain relief anymore, its about tapering people off opioids at all costs.  So all my excess upright hours will be devoted to pain patient advocacy.  There are many people who are worse off than me, but none of this is fair, nor appropriate. 

I am anxious about what the future holds, because my GP is following my pain specialist’s plan and I know from experience she will not deviate.  So my choices are make another $200 appointment to plead my case with my pain doc, or hope that I can talk my GP around. 

And I’ve just remembered that she didn’t even ASK about the amitryptaline that she insisted I start at my last appointment. I took it a few days but the side effects were horrific for me, and so stopped it.  I refuse to take it again. 

I want the medication that works best for me, that gives me quality of life and at a dose that is appropriate, effective and safe.  This battle is far from won, but it is deferred for another month, with the spectre of being disabled by pain again still looming. 



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