Rheumatoid Arthritis, degenerative disease and the opioid crisis

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I take opioid pain relief every day.  Oxycodone to be exact, Targin (oxycodone and naloxone, currently 10mg morning and night) which is slow release, and oxynorm (10mg immediate release oxycodone) 3 – 6 times daily, depending on the day.

Some days pain is worse than other days, but every day I have pain that warrants opioid pain relief.  It is moderate to severe pain, pain that is non-responsive to non-opioid analgesia, as the boffins put it.

Without opioids, my life is honestly a misery of pain and fatigue.  I can’t drive a car safely, I can’t leave the house.  I can barely get to the bathroom by myself.  I can’t exercise, I can’t do physiotherapy, I can’t concentrate, I can’t care for my kids.  I have lived without opioid pain relief in the past, and my life was honestly not worth living.  A life filled with daily, severe, unrelieved pain is not a life that anyone wants.

Unfortunately there are a lot of people who don’t believe that pain can be that severe, and can occur daily at that severity.  There are also people who don’t believe that opioids are effective for chronic pain.  There are very few studies showing that opioids are safe and effective, so those who want opioids to be denied to chronic pain patients twist that fact to say that “There are no studies showing that opioids reduce pain long term.”  They invent lies like “opioids increase pain long term”.  These statements are both untrue and inaccurate, but the media and various doctors’ groups have created a groundswell of support for these ignorant and untrue statements.  They have conflated illegal opioid use with medicinal opioids prescribed for long term pain relief, and the average punter doesn’t know the difference.  What’s worse, the average GP is either ignorant of the true facts and scientific studies, or too afraid to prescribe opioids because they are afraid that they will lose their medical licence.

All of this means that I get treated poorly by most doctors, and some doctors refuse to treat me at all. I am viewed as an addict, a weak person who should just exercise more, use meditation and mindfulness techniques, not focus on my pain so much, and if none of that works, well, I just should deal with it and shut up.

I’m far from the only one.  Things have been getting steadily worse in this country (Australia), gradually (blindly) following the horrific situation in the US, where pain patients have been forced off opioids, denied pain relief, denied treatment at all.  There are many stories of suicides, because life no longer holds any pleasure, life is nothing but pain. Endless, interminable, untreatable pain, which doctors ignore, because they fear reprisals. 

But back to me.  I am 12 weeks post a three level spinal fusion, one of the most painful surgeries and recoveries one can have.  At the two week mark my pain levels were lower than they were before the surgery.  Prior to surgery, I felt like I had a knife in my back, 24/7.  Literally stabbing and twisting all day long. There was no way to alleviate that pain, no position that relieved it completely.  Lying flat on my back was the best, but clearly not a position conducive to having any kind of life. 

Opioids took the edge of the pain and allowed me to do physiotherapy and other exercise.  Ultimately I had to have the surgery, and life has been infinitely better, since the 2 week post op mark.

The plan for after the surgery has been to taper off my opioid pain medications. The plan in my head was to get to the lowest dose of opioid where I can still function and live life.   But as the weeks have gone on, it is clear that my GPs plan has been to get me off my opioid pain medications.  Period. 

No one wants to take opioids every day.  Taking opioids every day means you’re experiencing severe pain every day. NO one wants that life.  But because the powers that be, the CDC, various medical organisations and the media have created the “opioid crisis”, even intelligent, highly trained doctors believe that opioids are ineffective for chronic pain, and all people who take daily opioids are addicted and want to continue to take opioids to feed that addiction.  NOT for pain relief.

This is obviously utter bullshit, but most doctors don’t have time to read every study out there. They too, read the headlines.  The government has been monitoring doctors who prescribe opioids, and sending letters if they consider the doctors has been over prescribing.  Because of this many doctors and practises have signs up stating that opioids will not be prescribed under any circumstances.  It has become pure insanity. And patients are suffering. Patients who are already amongst the most vulnerable people in society.

Anyway, off my hobby horse, and back to the point.  My GP has been prescribing opioids for me for many years, six maybe seven.  Over the last year, her attitude has changed, and she has made it clear that she is not a fan of opioids, but will continue to prescribe.  After the spinal fusion, I went to see her for a tapering schedule. As we discussed it, she made it clear that her goal was to get me completely off opioids. I told her I was keen for that too, which I was.  I was hopeful.  I imagined a life of not being dependent on opioids. I imagined one less medication to take every day.  It was a good mental picture.

Because the pain from my spine was so severe, I barely felt my rheumatoid arthritis back then.  You can only feel the worst pain that you have.  Now that the spinal pain has been reduced to a “4” or “5”, my rheumatoid arthritis pain is often more painful.  Often a “7” and sometimes an “8”.  I honestly had no idea how painful my rheumatoid was anymore…I had been living with much worse pain for so long, I didn’t know.

But.  Now that my spinal pain is reduced to mild/moderate, my RA is now the most painful pain.  My hands, feet, hips, shoulders, knees, elbows, jaw, and even ribs hurt daily.  It isn’t sharp, tearing pain like the spinal pain was, it’s a deep ache.  It hurts to move.  It hurts to not move.  The ache is always there, and its exhausting. 

Last month my GP tapered me down to 10mg of targin, morning and night. I had been on 40mg of targin morning and night prior to the spinal fusion.  Getting down to 10mg of targin was exciting.

Unfortunately my pain is no longer controlled.  The schedule that we agreed to means dropping 10mg of targin every four weeks.  The last four weeks of 10mg of targin have been hard.  My quality of life has dropped considerably. My pain levels have risen steadily.  And my activity levels and function have dropped radically.  Doing my physio exercises is much more painful, but I can do them still. There are only nine exercises.  But I have stopped doing all other exercise. Walking is painful, it feels like walking on marbles on a good day, hot coals on a bad day.  I’m exhausted constantly.  I need to lie down much more, rest.  But sleep is impossible without medication, pain wakes me at 3am every night.  I am back to where I was, in that pain is the last thing I feel at night and the first thing I’m aware of when I open my eyes.  It’s a miserable way to live.

And for a while, I didn’t have to live that way.  For a blissful few weeks, my pain levels were controlled more often than not. I still had megaflare days, knockdown days where I barely got out of bed.  I’ve accepted those will always happen. And I had days where I over did it, too much work or exercise, and pain a heavy pain price for the next few days. Also acceptable to me, there’s a reason for that pain. It had a function. 

And now for the last three weeks my pain has been out of control again.  And tomorrow I have to talk to my GP about it.  Four weeks are up and I am supposed to taper down to 5mg of targin, by her schedule. 

So its going to be an interesting appointment.  I had wanted to taper off opioids completely if it was possible.  I was truly bummed three weeks ago when I realised I’d hit the floor.  The lowest dose of opioid pain medication that would control my pain. And that dose was 20mg, morning and night, with 2 or 3 breakthrough doses. 

That’s a much higher dose than my GP wants to accept.  She believes that opioids are not appropriate to manage chronic pain.  I honestly don’t know what is going to happen tomorrow.  I don’t know if she will continue to prescribe 20mg of targin, or even if she’ll continue to prescrive 10mg of targin. She may well prescribe 5mg only, and I just have to accept that.

If that’s the case, I’m in deep trouble.  My life won’t be worth living again.

Tomorrow I am going to walk in there, and ask her a question:

Do you want to get me to the lowest effective dose of opioid medication, or do you want me to taper off at all costs?  What is more important to you, tapering your patient off opioids, or your patients quality of life?

Because tapering me off opioids just reduces my quality of life.  That’s the bottom line.  I don’t want to spend my life in bed. I don’t want to have to lie under a heated throw my entire life, and probably self-medicate with alcohol or pot.

Surely that wouldn’t be a good outcome, in anyone’s terms.

But tomorrow, I will find out.  I’ve read other people’s stories, heart breaking stories, of their doctors refusing them opioids.  I’ve written articles, I’ve talked to media, I’ve attended conferences, I’ve advocated strongly that there IS a place for opioid pain relief for chronic pain. I am passionate about the cause, but I did this knowing I was ‘safe’ – I had doctors who understood my medical needs, my levels of pain and the opioids were both safe and effective for me.

Tomorrow I might find myself one of those people who’s pain medications have been taken away.

3 COMMENTS

  1. Good luck for the apt Neen. I am on di-hydrocodeine 3 times a day at 60mg. The worst days I take 4 doses but I keep those to an absolute worst day need. I am in the UK and I dread the day our government follow the States in this ridiculous, unfounded train of thought.
    If they had to spend one day in the pain we do as chronic pain patients they’d change their thinking in a heartbeat.
    I watched the Netflix show entitled The Pharmacist which I believe goes a long way in telling the true story of why they have such issues with opiods and it comes down to the doctors who prescribe them for acute pain and fail to follow up on those patients.They are the crux of the issue and those who sell on the black market are the rest of the problem. Not those of us who simply want to be able to function daily and have some quality of life.

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