This blog is personal and emotional and it is real. It is about me...
After attending the CPTA conference and listening to Lorimer Moseley discuss current scientific knowledge and experience with treating pain, I realised how much my personal journey has been guided by this work. The is one specific reason I wish to share this with you….. the journey and how much my thinking and knowledge has changed. Not often do we have the opportunity to share the entire journey of recovery with a patient and to see how each element comes in and out of play. So this is mine and hopefully it provides you with an example of how the Explain Pain education material and model is integrated into real life. I’m not a person who suffers from fibromyalgia, CRPS or phantom limb pain…. just a Physio….. who has struggled with chronic left hip pain since January 2013. Throughout the blog I will share ideas that Lorimer spoke about which resonated with me and ones that have been pivotal in my story.
My personal experience this year has been about learning strategies for active coping, effective pacing, finding the flare up line, goal setting, relearning movements and re-exposing my body to activity in a graded way.
Honestly, I’m nervous to share this… to admit that even though I love working with people in pain, that when it comes to myself I may have got it wrong. I may have thought things or done things that feed the perpetual cycle. I’m sure some readers will judge me and as an outsider it might seem obvious where I went wrong…. but put yourself in my shoes and be open minded about the fact that this is how it actually occurs. The raw and real life struggle and a journey to recovery where I now feel fitter, stronger and more empowered with tools and knowledge than ever before.
Listening to Lorimer
“When the model clicks, the clinical journey becomes fantastic.”
“I want to sit with them (patients) on their encounter with pain.”
These are two quotes that Lorimer began with and what inspired me to write this blog. Because after struggling through this mostly by myself and then getting to the point where the model clicks I have learnt so much about the journey to recovery and at times had to sit with myself as the patient and the therapist on this encounter with pain.
One horrible misconception that has occurred over time for many is that chronic pain is something that people have to learn to deal with and cope with as though it is permeant and ever lasting. Wouldn’t it be nice if we thought that working with chronic pain would lead to recovery? “Maybe for some, and maybe for many, we might consider the possibility that we can help people live well without pain” (Moseley & Butler., 2015, p.2).
Pain is an output of the brain designed to protect us. The brain is a wonderful protectometer which determines how safe we are and what the potential harm exists. There are four stages in the journey to recover from chronic pain.
- Identify and eliminate as many DIMS as you can (including mechanical aggs too).
- Identify and incorporate as many SIMS as you can (especially loving support).
- Get under the flare up line.
- Graded exposure to activity.
Lorimer spoke about DIMS and SIMS during his lectures and how they relate to pain. Danger in Me and Safety in Me. This was the first time I had heard these terms but can seen now that I already knew what they were just didn't know what to call them. Before I could heal I had to accept that maybe my translation of knowledge to my own injury was incorrect. Initially I was in denial about this but now I realise I was still learning and that mistakes are ok…. at least now I have learnt from them. DiMS and SiMs and the protectometer - what a fantastic representation of everything that occurs. There is an Explain Pain handbook that is for "people in pain, their friends, families and health professionals. It will help you map your recovery, implement active coping strategies, safely increase daily activities and find freedom from pain, all by using the power of knowledge and harnessing the remarkable bioplasticity that exists in every single one of us" (Explain Pain Handbook, 2015).
Where did it all begin?
The question is was there a moment in time? I think for me there was. January 2013 I was snow boarding in Jackson Hole, Wyoming. For those of you who’ve been there… you’ll nod in an unspoken agreement that this mountain tests even the best (which I’m not) and for those of you who haven’t… you need to tackle these slopes.
Deep powder and challenging terrain makes for an amazing place to test your skills. Snow boarding through deep powder requires a different stance and shift in body weight than on the groomed runs and one too many times I leant forward. Only to catch an edge and be thrown forward over my left leg while the board sticks and gets pulled backwards…. resulting in a forced hyperextension moment at the hip. Too many times this occurred before I got the hang of things and on one fall my hip felt like it cramped so badly at the front. After that every time I stood up from a chair for the next 8 months my leg would hurt to straighten out and put weight on. Once I was standing there was no further problem. So I just learnt to stand up on my right leg and slowly lower the left… taking off slowly into a walk and then I was on my way. By August 2013 I was sitting so much during my masters degree that my whole leg started to ache and this gnawing pain appeared in my shin.
1. Identify and eliminate as many DIMS as you can
What is a DiM? A DiM is a ‘danger in me’ message which relates to the things you do, people in your life, places you go, things you think and believe, things you say and things your hear, see, smell, taste and touch.
I’m going to be graphic with my descriptions because one thing I’ve learnt now is that my colourful vocabulary is dangerous and definitely doesn’t help. As you read through my story… see how many DiMS start to appear (I'll highlight a few too).
Coming back to the story...8 months later I decided to get an assessment and was referred for an MRI… turns out my hips are slightly dysplastic and I had a labral tear…. oh dear what those words have done to me…. an idea built up in my mind that now my hips (which previously were strong enough to snowboard, play competitive volleyball and make me an indestructible person ready to take on anything) are damaged and made me question if they would ever recover.
I did the rehab and it got a lot better but I also became an endurance coper. I continued to play hockey, swim and run just accepting that pain was a permanent part of the way it would be. Always pushing and running faster and harder and just ignoring that pain which initially started as a stiffness isolated to the front of my hip and slowly spread to my shin and then permanently resided in the lateral part of my hip and buttock. To the point that it hurt to stand on my leg and put my pants on, that I couldn’t sit without pain let alone stand back up and then I couldn’t sleep on my left hand side.
In November the next event occurred… my first encounter with severe back pain. It was the semifinal at hockey and there is no hiding I play hard and along the way developed some enemies in other teams. But its fun… running away from people… chasing people…. smacking balls at people and scoring goals. Then they purposely tripped me up and I went flying… thought I was pretty cool actually because I pulled out a roll and dive from volleyball… somersaulted and stood back up to get my stick and keep running. There was no pain but most likely an injury. How is this possible? As Lorimer explains the brain is crucial in determining how much protection we need and in this instance we really needed to win. I didn’t feel anything until the next day when I couldn’t stand up out of bed without holding onto the wall. My back literally felt like it couldn’t stand any weight and then there was the dragging of my right foot…. a painless foot drop, an inability to bend forward and backwards and a SLR of 10 degrees. Pain is about protection not damage.
Pain is the the outcome of [credible evidence of danger and need to protect] - [credible evidence of safety and ability to protect].
Over the course of 6 months that got better too. I swam a lot, started yoga (which was amazing) but never made it back to regular running and my SLR was only 50-60 deg at its best. Something else I thought might be permanent.
June 2014. My sister asked me to play hockey with her and considering that I really wasn’t in much pain and felt fit from swimming I decided to go. First game was amazing and so much fun. I loved it. No issues apart from my legs feeling like they got injected with lactic acid that turned into concrete (how good is that description). Then the next week I returned. Not feeling fully recovered but good enough to try again. Whistle blows and game begins. Ball is passed to me and I take one step forward aiming for a long hit down the field. As soon as my stick contacted that ball it felt like an explosion in my legs. Both quads and left glut being shot at the same time. Is it possible to contract a muscle that isn’t strong enough and make it tear itself???? Seriously thats what it felt like. My brain screamed danger and I felt so negatively about my stupid hip as though it was it's own fault… as though it wasn’t really part of me…. I didn’t like my stupid hip and I did little about helping it. I limp and limped and lifted and loaded and at the time I had pain for some part of every day…. not constant and it definitely followed a mechanical pattern of agg/ease but I didn’t have a single day where it didn’t hurt.
Then it unravelled further from there. I returned to playing volleyball after 5 years of being 'retired'. I went to train with my old club team and was so excited to see everyone again. It was the best experience and I loved the natural way my body just knew how to play…. jump jump jump and then my left hip pain got so bad that I could not longer put weight on it or lift any additional weight.
Repeat MRI - bone oedema, labral tear ISQ, everything else the same…. but my pain and function was so bad that the only thing I could blame was the bony oedema and the radiologist says that is a lot of bruising… "you really need to be carefully putting more weight through that hip".
Oh dear - how can I manage that. I’m a physio and lift things every day. I garden, I have a big house to clean and I love exercising. Its hopeless and I can’t modify things enough to make this better.
And now we are in December 2014 where I couldn’t weight bear without pain in my hip and shin. I couldn’t walk up and down stairs and couldn’t add additional weight without a sensation of giving way. I’m not saying that there wasn’t a structural problem or a peripheral nociceptive driver… but I was not helping myself. Was this the cause of my pain or the tipping point? Lorimer explained a story about the Bilby that make the bathtub overflow which is a similar analogy to the last straw that broke the camel's back. Don’t be tricked into attributing everything to that one moment without considering everything else that is going on in the persons life. This is a mistake I definitely made - being stuck in the path-anatomical model for pain, knowing and accepting the biopsychosocial model and yet not inserting my own story into that model.
All long the way I’ve known about pain management strategies - pacing, graded exposure to exercise, the explanation of chronic pain but for some reason my knowledge just never translated into helping me. I didn’t understand how to make it help myself but I see now in hindsight it was because I didn’t realise that my conceptualisation of the problem was wrong.
January 2015…. I’m no longer working and preparing to move overseas. Every day I went swimming or to yoga with the commitment to help my body heal. How quickly it did. January was the month of healing and feeling positive about my health. Every time I went to yoga the teacher asked for us to set 3 quiet intensions and mine were always “be confident to stand on your leg and know it is strong enough to hold you” “be grateful for you health” “love the body you have been given and nurture it”. These sound silly but they are a SiM and something I repeated over and over again. Every time I repeat these words I act to strength the neurotags in my brain associated with healing and this was the first step to recovery. Not activating the neurotags associated with pain…. using SIMS rather than DIMS.
2. Identify & incorporate as many SIMS as you can.
The key to moving onto the next step is to offset DiMS with SiMS.
February - the month of walking and learning to tackle stairs and hills. We moved to San Francisco and I found out I wasn’t going to be able to gain a license for PT. Totally devastating but equally empowering. My husband and I had many conversations trying to nut out what my identity really was. What do you need to do to feel at the end of the day that your life is purposeful and what makes you happy. I’d never been faced with this question before and I was always a physio. I would encourage you sometime to think about the answer for that question. What is your personal legend?
I want to feel like I am helping. That is me in a nutshell…. I love helping other people. So I started doing volunteer work teaching below-grade-average children how to read. It was so rewarding and it confirmed that helping comes in many forms. This blog is a way for me to feel like I am helping and that is what motivates me to write. The lessons continued from there...
Have a sense of ownership over your body.
Between January and March I decided to do something positive about my hip pain.
I still couldn’t walk for more than 10 minutes, go up and down stairs, walk up hills, run, lift, sleep on my LHS, perform an ASLR, bend forward and return painfree or sit with ER in my hip. I designed a weekly exercise program. Yoga, swimming, gradual re-exposure to walking and a small program of hip ER with theraband in 4PK, SLS with contralateral shoulder ER, SLS with opposite shoulder extension and SL squat with theraband row. These ones didn't flare me up. I did these at home and allowed time everyday to rest when I got tired. I didn’t fear the pain. I walked further every day. I continued with yoga as it helped me stretch, breathe, practice my balance and spend time dedicating my day to myself. I slept a lot. I started doing things that made me happy - playing piano, sitting in the sun and helping children read.
3. Get under the flare up line
In March I bought a bike because I just couldn’t walk as far as I needed every day without crossing the flare up line and this was the best decision ever. The more I rode the bike the more strength returned to my leg and my muscles started to bulk. My hip responded so well to the loading every day and suddenly the pain was there for less than one hour and mostly only when I got too tired.
I found the flare up line and I knew how to manage that. I decided every day (in that day) what the best exercise was for how I felt - swimming, running, walking, riding, tennis, yoga or pilates - yep these are all the things I like to do and am now able to do without any pain. There is a buffer zone that exists between the protect by pain line and the tissue tolerance line and in chronic pain that buffer grows. To recover you need to find that line and know that you are safe because that buffer is so big that hurting doesn’t mean you are harming yourself. In order to recovery we need to find ways of knowing this line, not boom-busting in and out of it, and to do this you need skills to cope. For me those skills were to use a spiky ball and to rest to ease my pain and then to plan how I was going to test that line the next day. Each day was an opportunity for growth and change and improvement.
I had to find the flare up line and reduce the buffer zone, to ask my body to respond, and to pressure it to change and grow.
I monitored my activity by purchasing an apple watch and measured how much I was doing each day as a way to re-exposuring my body to exercise in a graded way. This meant being happy to go for a shorter walk than normal or swimming some of the way. Finding how much of each thing I could tolerate well, enjoy, celebrate in completing without boom-busting all the time.
Another important philosophy that will help move you into the final stage is dealing with flare ups and graded exposure. As the handbook explains “Don’t flare up. Don’t freak out if you do”. Because flare ups are normal and a natural part of the process and freaking out is only distressing. This comes back to the realisation that I know longer feared my pain.
4. Graded exposure
"Graded exposure to activity will only work if you prevent the unwanted response. Aim to induce adaptable change not just make your body resilient" (Lorimer, CPTA Conference, 2105). This doesn’t just mean more load. Graded exposure is to repeat what you did in a more threatening environment, to increase load to add a cognitive element and to add a social load. For me this meant exercising in a group, taking on a harder classes, exercising with my friends and husband… and recognising that when I did these things they counted as a progression. Going for a run by myself or going for a run with my husband are two different loads and after it was finished I recognised and acknowledged that on that run I achieved something more that I had the previous time.
Since April the improvement has been exponential. I've been almost painfree for months now. Somedays I still have pain but nothing severe anymore.
I can heal, I am strong, I know my body, I love my body and exercising it and strengthening it makes me feel awesome.
When I get sore and tired my personal preference is to go to yoga and stretch my spine and use the spiky ball on the muscles around my hip. Everyone has their own strategies, these are mine. It’s only natural that with all this activity the muscles will be tired and maybe tight… but that is what you need to get better. Always asking the system to adapt.
I celebrate the wins as much as the losses. The pain has been so constant and sometimes the nagging along the side of my shin is exhausting. But really it shouldn’t become a conversation topic for every day because that is exhausting too. So I changed my mind. When my husband came home and asked "how was your day?" I said it was great. It really was. There is something to celebrate from every day and that is what I spoke about first. The sun, the weather, I learnt a new piano song, I wrote a blog I learnt so much about etc etc… and then he’d ask “how is your body?” and I’d tell him how I’d managed to go walking or swimming or what ever and what felt stronger today. Even saying that I walked to the top of the steep hill we live on without pain is something to celebrate. And together we share positive stories about our days. It’s not pretend, it’s not fake, it’s not exaggerated, it is choosing what focus you have on life and choosing how you view your day.
In August I ran my first 10km race, painfree, without issue… I’ve never run that far before. My leg feels great when I push off the floor and I feel the strength powering back out of it. Running up stairs and hills and having the confidence to use it. That feeling took a long time to come and has been my mantra for well over a year now. Love your body. Be grateful for your health. Feel confident to stand on that leg.
This is my story and I feel that I am out of this journey of chronic pain and on a new journey of exploration, adventure, and growing to be stronger. I am grateful for what I have learnt and this experience and these mistakes have taught me invaluable lessons. The Explain Pain book and the handbook helps describe so many of the parts of my journey. The DIMS and SIMS have been my most powerful tool.
These are my DIMS:
- My belief that my hip would never be strong again was awful.
- I was an endurance coper and just kept pushing through.
- Being strong is not the same as pushing through a boom-bust cycle.
- I felt like I couldn’t pace and that there was no time for it.
- My terminology and descriptions where powerful and negative. Being precise about the terminology about the biology of pain is an important step to explaining and understanding pain.
These are my SIMS:
- At the end of the day I won’t label it and I no longer think about blaming a structure.
- My thoughts are so different - I know I am strong, I know that I will heal, I know that I am my worst enemy with allowing negative thoughts to control my day. I know that I am my best friend and biggest inspirer when I set my mind to it.
- I no longer picture a future not being able to play volleyball again or hockey…. I look forward to the time when all those things come back.
- I purposely celebrate the small wins and good things in my life and I acknowledge that having small flare ups are part of the journey.
- I set realistic goals one month at a time and I focus on them because I’ve realised that I already achieved my long term goals and I am already better than I thought I could ever be. Goal setting and acknowledgement of achievements is a Safety in Me Message.
- I have accepted that colourful vocab, while it creates an interesting and entertaining story, is a powerful Danger In Me message.
- I pace my days, my weeks and I communicate this with significant others around me so they know what I’m doing and I don’t have to feel guilty or ashamed for not being “my normal”.
- I dedicate every swim to enjoying the power as I pull through the water and recently I’ve started really pushing off the wall.
- I dedicate every soul-cycle to just being present, knowing that I am strong and getting out of my own head.
- I dedicate every run or walk or stairs to loving the feeling of my lungs working for more air. The feeling of being puffed and tired and soaking up the fresh air and sunlight.
- I dedicate every tennis session to the enjoyment of sharing sport with my husband again and loving the rotational power that happens when you hit the sweet spot on the ball.
- I dedicate every Pilates session to practicing my hip strength, maintaining my SLR and hip mobility (which is now more than I’ve ever had) and to practicing movements that used to cause me pain.
- I know that I’m always changing, that sometimes I just get random pain and I don’t have to explain it.
- I know there are things that are bound to set me off and sitting in a low chair or in high heels with my legs crossed is one of them.
What would I do differently now?
- I would rest more in the acute phase.
- I should have taken a few days off when that hockey incident occurred rather than just limping around.
- I would focus on ensuring my sleep is good quality and that I get enough of it. Sleeping is my most powerful analgesic and when I’m tired my body is always more sensitive.
- I would set a plan.
- I would have asked for more help.
- I would have worked hard to recover rather than just expect things to occur with time.
As Lorimer explained so well in his lecture…. being loved and supported is so important and I have always had that. But maybe I just didn’t love and support myself enough, accept the help and guidance of others and to be happy, which for me is to help others. Thank you for reading this and I know that it may seem obvious from an outsiders perspective but when you are in the thick of it, not all things seem so clear. Hindsight is a beautiful thing. Mistakes teach us lessons we would have never learnt and sometimes making that mistake is the only way to learn that particular lesson.
“Our biology will adapt to any demand given - be the driver in your own journey - put demands on your body.” (Moseley, CTPA Conference, 2015).
It was a wonderful opportunity to spend a whole day listening to and learning from Lorimer. The handbook and Explain Pain books are fantastic resources if you want to know more and there is a plethora of research investigating the efficacy of this approach. My goal was to insert my personal story as a way of demonstrating how I found my way through these phases but then listening to Lorimer made me realised there is an actual pathway. I am so grateful that I have recovered and that what I know now reflects this model. To finish with the advice from Lorimer “have persistence, courage, patience and commitment. Stay motivated. Help others find their way back to a meaningful and fruitful life - to be loved and love in return”.
I am grateful. I am strong. I am confident and I am helping….. what SIMS will you share with yourself or others today? Sian
Moseley, G. L., & Butler, D. S. (2015). Fifteen Years of Explaining Pain: The Past, Present, and Future. The Journal of Pain, 16(9), 807-813.