Living with chronic pain – and why is it so hard for me to get opioid pain medications

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I have been on opioid pain medications for many years, and my doses have gone up and they’ve gone down, depending on how severe my pain is.  After my spinal fusion, exactly a year ago, I initiated a taper, hoping to get off opioids completely.  Unfortunately, that wasn’t possible, but I did reduce my doses by half. I was happy with that. 

Sadly, my GP and pain management doctor were NOT happy with that, and they initiated a force taper and reduced my opioids to the point where my quality of life was reduced.  I now have to be very careful I don’t go over their mandated doses, regardless of how much pain I am in.  This means there are many days where I am forced to lie on the couch, rather than go to the gym and exercise, or work, or do the grocery shopping, or even go out and do something fun. 

Recently I had to stop some of my rheumatoid arthritis medications, the ones that are liver toxic (methotrexate and baricitinib) because my liver enzymes were very elevated. It has been four weeks now and my pain levels are much higher.  And I have used more pain medication than usual because of the increased pain.

I ran out early, and saw my GP.  She came down on me hard, and told me that was NOT OK, despite my having a very good explanation for why I went over my usual doses.  I am relatively new to her care, and she assured me she would manage my pain medications for a few months while she got to know me.  This was only the second time I’d seen her for opioids, (oxynorm and targin) and she red flagged me immediately.

Well, shit. 

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This was always a possibility, but I felt hugely let down. Betrayed even.  She wrote a script for a week’s worth and told me to come back for a “review” and to plan a taper schedule. 

Great. Back to square one, only with a new GP who doesn’t know my history. 

That appointment was this morning, I’ve just gotten home.  It went better than I expected, but she still wants me to taper. I have made an appointment with my pain management doctor for review, because she demanded it. Luckily I am over the medicare safety net now, and that appointment won’t cost me the usual $80-$100 out of pocket, probably more like $20-30.  It’s a waste of my time and energy, but it’s a hoop she demands I jump through.  Ok, fair enough. 

So why do I have such trouble getting opioids when other people are still ablet o get theirs?

I have talked to a lot of people, looking for similarities and differences to figure out what my doctors problems are.  Because they will only said “opioids are not safe” or “opioids are not effective for chronic pain” and other idiotic things like that.   But I’m pretty sure I’ve worked it out. 

They want me to take slow-release opioids only and not immediate release opioids

Years ago some bright spark hypothesized that slow release opioids were better for chronic pain and reduced the risk of addiction, because the steady-state blood levels of opioids didn’t cause the “rush” of immediate release opioids, followed by the “crash” when they wore off after four hours or so.  They believed that “rush” and “crash” cycle made addiction far more likely.  This theory was born in addiction medicine and may well be true in that patient population. But the chronic pain population is an entirely different patient group, and I can’t find any studies in chronic pain patients relating to slow-release opioids and addiction rates.  So its just that, a theory. An extrapolation from one patient group to another.  There is no proof.  But everyone believes it to be true it because it’s been repeated over and over, and they’ve based their opioid prescribing for chronic pain on this theory.

But I don’t use opioids that way.  I take my slow release when I get up, alone with an immediate release tablet. My pain is always worse in the mornings, and I need more than the slow release to get up and get going.  My immediate release opioids reach maximum benefit in one hour.  My slow-release opioids take several hours to get to maximum benefit.  Once the immediate release kicks in, I do my stretches, and start moving and loosening up my joints. 

Without the immediate release the pain doesn’t lift until maybe lunchtime.  With the immediate release it usually takes about an hour. So I’m often relatively mobile by 8am.  I get up and have a shower and make breakfast and tidy up, or whatever. I’m slow, sure, but I start DOING things, instead of just lying on the couch feeling shit.   I’d prefer to be up and active, if possible. And the way I take my medications, it IS possible.

I use opioid to increase my cardiovascular fitness

If it’s a good day, I usually go to gym or walk the dogs around lunchtime. If it’s a bad day, I take an extra dose of oxynorm an hour before I intend to exercise, so that my pain levels can be their lowest and I can work out harder.  This is how I achieved a “High” level of fitness, according to my apple watch fitness tracker.  Since my opioid pain medications were reduced in September 2020 my fitness levels dropped to “average”.  Obviously “high” fitness is better than “average”.  This is solid evidence that I used my opioid pain medications to improve my fitness levels and therefore my general health.   I’d say they should be applauding me, but no.  Apparently, I’m using my opioids “wrong”.  Sigh.

Slow release opioids do not last 12 hours for everyone

I usually take another dose at around 4pm.  Contrary to popular belief (and the marketing materials) slow-release oxycodone doesn’t last 12 hours for everyone.  It’s been well-documented that for some people it only lasts 8 hours. 

This pain management specialist has found it in their practice and provides studies to support that position:

https://www.practicalpainmanagement.com/treatments/pharmacological/opioids/experience-oxycontin-12-hour-dosing

Another study that states that 25% of patient require 8 hour dosing of extended release opioids.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5019471/

I’m one of those people whose opioids wear off after 8 hours.  I can feel that it’s wearing off.  If I let it wear off completely, say til 5 or 6pm, I’ll be in a truck-load of pain and it will be harder to get back under control.  So I don’t like to do that. I certainly don’t wait the full 12 hours, because that’s just a miserable (and pointless) experience. 

This is also “wrong”.  But is what works best for me.  Again, pain management needs to be individualised care!  People metabolise medications at different rates.  I do get woken up often around 4 or 5am, which is when the slow release has worn off again.  If I’m deeply asleep, I’ll sleep through the pain.  But sometimes I’ll be woken very early. 

I wake up with severe pain EVERY day. The only difference is whether that happens at 2am or 4am or 7am.  If its 2am and the pain is terrible, I will take another dose. 

So that’s a maximum of four doses of immediate release oxycodone daily.   MOST days, when I was on my rheumatoid arthritis medications, I took only two doses.  Some days I took three doses.  Very rarely I took four doses.  My usual prescription allows me to take three doses daily, and I used to wind up with extras left over, because there were many days when I only needed two doses.  BUT if a full body megaflare hit, I’d be ablet to use those extras to get through the flare, so I didn’t need to ask for more medication during bad flare months.  I managed my medications responsibly and I didn’t misuse my medication.  Before the age of opioid hysteria I was trusted to manage my opioid pain medications safely and appropriately.

But then my previous GP insisted on tapering me lower, and only allowing me 2.5 doses daily.  I objected, stated my case, explaining ALL of this.  She dismissed my arguments and told me the taper would continue whether I liked it or not. I found this offensive and changed GPs.

I’d like to be respected as an adult who has been taking these medications for many years, I understand them, their risks and benefits, their mode of action, and how they work in my body specifically. I’d like to be able to take the dose I need on any given day, based on my pain levels and my experience with these medications.  I am not an addict, I am not looking for a “high” I am looking for effective pain relief, and I’m not asking for ever-increasing doses. 

Pain management needs to be individualised to the patient.  I don’t see why I should be denied effective medications because I choose to take these medications in a way that suits my life goals and increases my quality of life.  While some people may do better on extended release medications alone, that is not the case for me. There’s no evidence that it decreases addiction rates.

And even if I could find that evidence, I am not addicted.  I show no signs of opioid use disorder (OUD).  I never go over my medication doses, unless there is a valid reason e.g. being unable to take my rheumatoid arthritis medications and I show no aberrant behaviours.  So the point is moot, as far as I’m concerned. 

My GP is concerned about the risk of overdose.  There’s not much I can do to convince her that the risk is very, very low apart from point to my eight years of opioid pain medication use. I have never taken more oxycodone than prescribed (I used to be prescribed up to four tablets daily).   There is a level of pain that even opioids won’t relieve, and I know that if I’ve taken four doses and I’m still inpain, there is no use taking more.  It won’t help and it is too risky.  I have a long history of responsible use, there is no reason to think that one day I might down the whole box, or accidentally take too much because I’m reckless or don’t understand the risks.  All I can do is assure her I respect the risks and understand them.  Its up to her to trust me. 

Ultimately she listened as I stated my case about my fitness, my lifestyle, the benefits.  She agreed to write me a script for this month, and was pleased that I have an appointment with my pain management doctor this month.  She said it shows I’m willing to work within the rules.  I am hoping my pain doc will listen to me, but I have had this conversation with him twice already.  I have to keep trying because its my quality AND quantity of life that’s at stake.

I am building trust with my GP.  She did listen to my arguments, and she did sympathise.  But the last thing she said to me was “I know this is very hard for you, and I know you’ve got pain and I know you’re not going to agree with you, but I want to taper this dose lower than it is now.”

Just when I thought I’d presented my case and at least had her reserving her judgement.  She is still staunch in her believe that my opioid use is problematic.  My pain management doctor appointment is in two weeks.  I will gather my evidence to present to him, and try again. 

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