I have been one of the most ardent defenders of the right to have opioids or as far as any medicine goes, all options on the table to deal with our chronic pain. I have written articles in our local paper, contacted state and national governmental representatives, and told anyone who would listen that to interfere in the patient/doctor relationship when it comes to care is purely immoral.
Yet today, I write this blog post to say that I am working to get off of as much opioid use as possible. I have now reduced my opioid usage down by over three-fourths and it has been nothing short of hell. I have felt like a freaking drug addict and my body has responded that way as well. I am sweating and having some willies, shakes left over from this slow, doctor assisted, reduction. But I am thinking that it is totally worth it.
I still have pain issues. My lumbar and cervical spine is not well and if I do anything other than get up out of bed and walk to my easy chair, I am toast. If I walk out in my shop and attempt to carve, after a while, I am done for the day. My legs are unsteady and I am afraid I am heading towards a wheelchair because when I get up in the morning, it is really difficult to gain balance. Same thing at any point during the day but I swear , me, Tom Selleck look alike, Magnum PI, in a wheel chair? I just can’t think of it. That is beside the point because I am now rethinking our use of opioids versus the care you and I receive.
If indeed it is the best pain medicine for folks who need them, they should be allowed to get them. I have fought as hard as anyone to make sure they are accessible. Yet now, after changing pain management clinics and now reducing the very pain med I have fought to have access for, I wonder if our fight for opioid treatment is flawed. Media and government are stuck on the negative dynamics of pain, ie, opioids and their side effects, while we, individuals, people in pain, are forgotten, lost in an argument that we cannot win.
The emphasis on chronic pain has been on opioids and not on our treatment and now, after all I have gone through, I wonder if that shouldn’t be where we need to be raising our voices.
I think that we should demand that doctors and providers change the way we are treated rather than demand a particular form of treatment. I am reading a book right now called the Wounded Storyteller by Arthur Frank and it is an excellent read. You may be interested in his book simply because of how it talks about the change that happens to people when they become ill and how their stories of existence and being changes as well. It is as if our identity is stolen right in front of us and we are left with trying to describe this painful life we live in. It is our very own life story and I am not sure that the rating scale of pain from 1-10 that we all take gets at it.
It has me wondering if we should stop all of our complaining about only slice of our treatment (opioids) and start expecting doctors to hear our stories in order to develop a comprehensive approach to our pain management.
Many of them simply don’t listen and I wonder whether or not they have been trained to listen. I do believe that if that part was changed and if we felt we were heard then it may change some things about how we are treated for the source of our pain.
Let me give you an example of what I mean.
So I go to my general doctor who does blood work on me as ordered from my new pain management doctor. The blood work is to discover my B12, Iron, and vitamin d levels. When my general doc gets the result, his response, briefly may I add, was that everything is within the margins as they should be. But when my pain management doc saw them, he said the levels are unacceptable.
Sure enough, after I read the research done on vitamin deficiency, the pain management doc was correct; my levels were not only low but deficient. My pain management doc listened to me as I talked about the increase in palpitations, the labored breathing, the sleep apnea, the complete package of issues that are side effects to opioids and the previous strategy for my pain management at the other clinic. The appointment with him lasted longer than a few minutes, with him doing an in depth probe into what was going on which included a weaning off of opioids in order to see what was at work in my pain filled system.
He shared with me the studies on opioid usage creating more pain in my body. He checked my reflexes and talked about what deficiency in B12 would do to my lack of reflexes in my feet. He asked my wife how I slept and then promptly ordered a sleep study. He ordered an MRI of my neck and before I left did a series of trigger point injections in my neck and back that felt like I had laid down in a bed of scorpions. And we looked at a picture he had taken of me on my first visit, when I was taking high levels of opioids against where I am one month later and the picture was astonishing.
Then he went on a rail against pain management clinics that are owned by politicians who were looking at the bottom line and the kickbacks rather than our care and the need for full blown medical marijuana. He then thumbed his nose at the insurance industry and prescribed me marinol, a synthetic THC that after one month is beginning to help me tremendously.
It has been hell reducing my opioid usage. Pain flares have gone off everywhere in my body for 3 weeks, 3 hellish weeks. But I am now more present. My breathing has gotten better. My heart has stopped palpitating now. I have issues in my spine that are going to require attention.
How do we get the doctors to listen to us, to really listen to us rather than throwing pills at us? I believe if we figure that out then we can change the balance to a more patient-centric experience which may result in less pain.
That would be a conversation worth having, wouldn’t it?
Editor’s Note: Kerry Smith is a former minister, a professional artist, and has suffered with chronic pain for 14 years. He has lectured and written on the topic of chronic pain for several years. Here’s a link to his art studio website.