Trevor Barker (left) and David Butler (right) during the 2019 Pain Revolution Tour in Australia.
Foreword to the new miniseries by Lars Avemarie
I started the “Pain Expert series” back in 2014. The series has had entries with some of the most esteemed academics and researchers in the pain field, like Moseley, Louw, O’Sullivan, Marchand, Thacker, Nijs, Nachemson, and Professor Melzack. I have also tried to cast light on the clinicians that work at the forefront of this new field. Clinicians that show us the way by “leading by example”. These clinicians work on the implementation of this research into the pragmatic treatment of people with pain.
The idea of me starting the “The Pain Expert series” was me sharing my research notes on social media. I often take notes when reading articles, research, or viewing lectures.
Traveling worldwide (mostly Europe), teaching my course, and giving lectures to help clinicians bridge the gap between research and pain rehabilitation. It has made me realize something. The current pain research is, to a large degree, underutilized by clinicians. Clinicians can learn a lot from reading pain research and from listening to pain researchers.
To treat pain effectively, we need to know what pain is, and we need to understand what pain modulators there are, and the strength of the modulating factors. We need to make clinical reasoning based upon the current scientific consensus, and so far, not enough of this is being done!
Listening to Joletta Belton and Keith Meldrum’s talk at San Diego Pain Summit (free to view) this year made me realize something else. There is another group of people that we can learn a lot from, as clinicians. That is people who are experts in the lived experience of pain.
So the next installments of The Pain Expert series will be from experts in their own right; experts in the lived experience of pain.
Without further ado, here are Trevor Barker’s story and advice to us clinicians.
The Pain Expert series – The Lived Experience of Pain: Trevor Barker
In 2016 I boldly stepped out of my comfort zone to try a new approach to living with persistent pain. The short story is this approach worked. Today I’m living a life that was beyond my imagination after suffering pain for so long. Before I share some of the changes I made to managing pain that worked for me I’ll take time to share my story and how pain effected my life.
Persistent Pain is never only an ‘issue with tissues’, it’s a complex scenario where the importance of context and story really matter. What hurts for me and the intensity of my pain, is different to anyone else. Stepping on a small stone activates a danger alerting system in me that finds my leg buckling instantly with overwhelming pain. The second I check it out and discover it’s only a small stone- my pain dissipates and strength returns to my leg. And it’s only my left foot that has this immediate reaction. How come? To understand this you need to know I am diabetic and some years ago I cut my left foot and ignored it! It became infected, I was quite unwell. Whenever I get the slightest nudge or reminder on my left foot my whole system kicks in with the message somethings going on with your foot- don’t ignore!
Let’s step back in time to get a glimpse of life before I got into persistent pain, then look at how life was during 20 years of pain, what I did to try to manage life and then the best part, boldly trying something different and how that changed my life.
I grew up in a middle class family in the suburbs of Melbourne. Early on I learnt to not express my feelings, I learnt not be noticed, by pleasing others. To keep secrets. I learnt to not speak about stuff that frankly words don’t do justice to. I was subjected to abuse by a neighbour- severe enough to suppress memories. I do remember being sick most mornings for a year and my family thinking it was good that I quietly went off on my own. What was being laid down in my psyche was a pattern of not speaking about what was going on inside me- of deep feelings of shame and hurt, of holding in lots of confusion and anger. Pain on another level really.
Fast forward to doing an electrical apprenticeship where I injured my back. Two weeks of physiotherapy, anti- inflammatory medication and pain killers got me back to work. I didn’t report the injury. Of course true too my embedded psyche, I kept quiet!
Then in my early 30’s I injured my back working as an attendant carer. After rehab I went back to work and the next day re-injured it. More rehab- however this time I added another ingredient into the mix in response to pain. I added a few new tricks in order to protect myself. I started to avoid any activity that involved using my back. I was now on more pain killers, benzodiazepines were added, massage therapy, osteotherapy, myotherapy, physiotherapy, indeed any nameplate with therapy on it was tried! Avoiding any activity involving my back meant I laid down with a hot water bottle on my back for hours everyday. My go to management tools were all passive. They were all centred on a single focus of, ‘what’s wrong with my body and what can you do to fix it?’ When treatments failed I went to another ‘expert’ seeking a ‘proper’ diagnosis. It made sense to me. I was in pain something must be causing it and because I’m in more pain now everyone has failed to find that cause. This put me on a path of reinforcing more investigations and more doctors willing to fleece me of my hard earned dollars by offering treatments predisposed to fail because they focussed on one element of persistent pain.
At the same time as my ever increasing focus on ‘issues with my tissues’ continued, my mindset was being refined and narrowed in its focus. It was now not only focussed on discovering the cause of my pain it was focussed on and invested in the thought that I was broken. My body was stuffed. I was disabled. Today was the best day possible and tomorrow would be a little bit worse. At the height of my pain after trying every type of treatment apart from surgery, of being on high doses of opioids, of having falls, haemorrhoids (needing surgery) being continually lethargic and not ever getting sufficient sleep I hit a low point in my thinking. I began to see that what my doctor and specialists were offering was having the effect of more pain and less overall function. I was now lying down for most of the day and night, I was unemployed, and despite taking high levels of strong medication, I was in more pain than ever. I was feeling depressed and my outlook on any prospect for effective help whilst I viewed my situation though a medical lens, was bleak. ‘My body is stuffed’ type thinking was now engrained into my psyche. At the same time of debilitating pain, life was falling apart. My marriage was failing despite my best efforts. I had to face the distress of living in a toxic relationship and what this was doing to me. I avoided making the tough calls in order to manage, however it was becoming more apparent that as stress mounted pain increased, and it was well past the time to address the stresses in my life.
This low point in my thinking led me to developing a plan B. Plan A of following the medical route had clearly failed. I was just starting to realise that it wasn’t possible to rest more or take more medication with the outcome I was yearning for. That was a life, and one without debilitating pain.
Plan B involved selling everything up and going into a retirement village with a nursing home attached. I was 53. I picked out the place, made enquires, and discovered I was too young!
I then modified my home, started to look at in home support and then I talked to a friend. He lived with more pain than me and despite this he still had a life. I discovered he had completed a pain management program and he suggested I give it a go.
Fast forward 4 months and I was now walking through this programs doors to undertake their intake assessment process. Four hours of assessments, interviews and information. I remember thinking at the time ‘I’m no good, I can’t move, I can’t do anything they are asking, I’m stuffed.
This type of thinking demonstrates how challenging I was, showing up at a pain management program highly resisting their efforts to engage and me thinking, ‘I can’t do this’. ‘They don’t understand me’. ‘I’m beyond help’. I described myself as having a chronic condition called PMS. Poor me Syndrome.
Then the OT who was establishing my baseline physical capabilities (which I was in my mind failing on every measure) asked me to extend my arms sideways at shoulder height and hold them up for as long as I could. I smiled, ‘finally something I can do’, I muttered to myself. Up they went. 10 minutes latter without breaking a sweat he said, ‘well you are meant to hold them up until you drop, you’ve broken all records you can put them down now’. I share this to highlight the importance of context. How is it I could do this, when I could do nothing else? I play the flute and had done so for 40 years. This one task was the spark for a small change in my thinking. I was overdosing on PMS as my ‘normal’, and the door to thinking differently was cracked open a little when I started to experience the effect that moving and using my body- all be it just my arms! could make a difference to my abilities. The saying ‘use it or loose it’, comes to mind.
At this point I decided to give the program my best shot despite my thinking that what they had to offer would fail too. I saw that I’d given what my doctors had to offer my best effort and look where that got me- so I’d give this program my best effort if given a chance. I still had to get through the initial intake process.
Two days after doing the assessment they called me to offer a place as someone had dropped out in the next program that would start that weekend. On reflection working with challenging scenarios must be their norm and I’m pleased they saw past my initial reluctance to then quickly offer me a place in the program.
I arrived in pain, not being able to walk more than 200 m, reliant on medication, and overdosing on PMS.
I often get asked what one thing made a difference. I smile when asked this because some people are looking for a quick fix, that magic pill. Let me take some time to unpack what worked and my take on what clinicians can do to encourage and support sustained recovery.
Whilst I too was looking for that quick fix, which I now know isn’t realistic, the real skill in approaching someone living with persistent pain is to find a way to navigate the space between reality as it is (my PMS view) and what you know works over time. Crafting care that offers hope whilst change is progressing, is for my mind the real art of working in the persistent pain world.
The program I undertook at Albury Wodonga Persistent Pain Treatment Program takes a holistic approach based on whole of person focus. Based on a BPS evidence landscape they got me moving, they looked at my catastrophising and helped me calm down my stress. Mindfulness, education, warm water movement sessions, walking, gym, laughing, looking at my goals, help to reflect on my mindset and challenge this respectfully- all of this combined to start to shift my approach from a passive one, to an approach where I was actively involved in my own care.
The program is live in during the week, and you go home with a plan each weekend for 3 weeks. Lots of group work. By the end of the program I was off opioid medication and walking about 4 kms a day. I went home with a plan and I started to see that the opposite of what I had done for 20 years was what was really needed to help me regain control over my over sensitive pain systems.
12 months later I was off all pain medication and my normal pain levels had dropped from an 8 out of ten to a background noise of 2 out of ten. I had reengaged with friends and family, moved on from a toxic marriage with a far more positive outlook on life. A hopeful life and one where I was gaining in confidence to experience life after resetting my protectometer.
I hope this has given you a glimpse of what took me into pain and by turning this upside down I was able to begin on a different path towards recovery.
The final part of my story to date is found in the questions what aspects of the care you used matter most? and what thoughts do you have when talking to clinicians about what they can do to help those living with persistent pain?
Understanding that pain isn’t an accurate measure of tissue damage is a key point.
Context is vital. Taking time to hear my story before crafting a response that walks the line between contrasting what’s missing in my experience or mindset and beginning to introduce new approaches and concepts as my understanding grows. This shows respect for the importance of understanding that the more challenging a patients behaviour or mindset is, the more mindful I need to be of what might have put them in this highly protective place in the first place.
I experienced such care when 4 years after doing the program I had met a wonderful women and we were in the middle of planning our wedding. Suddenly my right leg began to hurt. To the point that I was unable to weight bear on it and unable to use it to activate the brake peddle in my car. I had to stop driving. Disaster!
I went to a local physio. I made an appointment and on entering the practice the receptionist welcomed me by name and a warm smile. She helped me feel welcome. She offered a drink. Then I started to fill out the intake form. Looking across to the reception desk I saw a large pinboard. The receptionist had researched all of the social groups in town. Brochures of card groups, gardening groups, walking groups, ect were listed. Volunteering opportunities where I could engage socially and make a difference. The care continued with me being understood as I was offered a calming responsive approach to my situation. I then talked to a friend who offered a question. Do you think you might be a little stressed with planning your wedding? Insightful!
What this example of going back to the local physiotherapist to look at my hurting leg shows is that a focus on creating safety, of hearing and respecting a patients story, of reducing your focus on ‘issues with tissues’ when persistent pain is the issue and increasing your use of psychological and social interventions is important. The care I received from this practice models to patients how all three legs of treating persistent pain matter.
From my perspective it’s widely accepted that persistent pain needs a three legged approach. In my case there isn’t much I can do about my tissues, and ramped up pain levels fit well with PMS, however it doesn’t fit well with having a life. I have come to appreciate that pain has a purpose, to tell us something is wrong and needs our attention now! However persistent pain is just that a pain. It really serves little value as I know my body and I don’t need reminding all the time that I have normal for my age wear and tear type issues. I’ve learnt that retraining my pain systems is possible. I can turn down the volume by reversing the strategies I was expert at which ramped up my stress. I’ll let you into my secret for doing this.
In 2019 I had the amazing experience of working with some of the best people in the world when it comes to pain science and education. I was involved in Pain Revolution with Dave Butler and Lorimer Moseley. Talk about learning from the best!
I used every moment of those 10 days to take in the key messages about applying pain science to the real world. Dave in particular talked a lot about Dim Sim therapy.
I’d started to use it in my life after hearing him talk about it in Albury in 2018. Then after spending those ten days talking in depth about it, I decided to apply dim sim therapy to everything.
I wrote about this in Pain Chats.
Basically Dim stand for Danger in me.
Sim stands for Safety in me.
The aim is to rewrite or ditch dims. In my case I rewrote the dim ‘don’t move or you will stuff your back’, to make it into a sim by understanding moving was good for me. My new Sim is I am strong, I am safe to move my back, this is good for me.
My passion is for all clinicians to examine how they can apply dim sim therapy to their practice, to their life. Reducing stresses (dims) and increasing Sims.
Of course my biggest Dim was a failed marriage, years of distress that i had to walk away from. After hearing Dave talk about how loving relationships are fabulous at releasing endorphins and a massive boost to our sim bin I started to explore the possibility of looking afresh at marriage. I was in no hurry, I was very cautious and then I met a wonderful women in Kay. In October we celebrate the first year of an incredible life together. We have both worked hard at welcome, calm, friends, family, love and acceptance.
I encourage clinicians offering care to those living with persistent pain to get comfortable with explaining pain, look carefully at your whole approach to care to ensure you are continually building safety, hearing the story behind the story, respecting the time it takes to recover, helping those around you become curious, encouraging change because staying put with the status quo with persistent pain, means more pain and less function.
The great hopeful news is that by reversing what got me into pain in the first place, facing my fears, ditching dims, creating a new normal filled with Sims, I have like so many learnt that our plasticity can be harnessed to aid our recovery.
In 2019 in the middle of the Pain Revolution Tour Lorimer Moseley said something that got my attention. I’m very aware he chooses his words carefully and thus quote is as close as I can recall.
He stood up and said ‘from all the research and science of what we know we can now say that recovery from persistent pain is a realistic treatment outcome!’
My passion is for all clinicians to make the most of what we now know works and put this into practice as a routine normal response to persistent pain. Once that happens people like me will be spared years of unnecessary pain.
I want to take the time to thank Trevor for sharing his remarkable story; I truly feel that his story can help us become better clinicians. Please share Trevor’s story; I think we could all learn from it!