A patient's understanding of persistent pain - Living Well with Pain

• Updated on: 2020-11-13
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Written by Christine • 24/09/2018• 1:00 pm• HCP , HCP understanding pain • 12 Comments
A patient’s understanding of persistent pain
Ten years ago, my life was changed by a manual handling accident. I now live in persistent pain, but I still live a good and fulfilled life, just one that is different.  Before the accident, like everyone else, I experienced pain periodically, for example when I fell over, when I sprained my ankle or when I burnt myself on a hot pan.   I assumed that pain meant I had physically ‘hurt’ a part of myself and that when it ‘healed’ the pain would stop.  I didn’t put much thought into what pain was or what it was affected by.  I didn’t need to.
For the first four years after my accident I remained largely ignorant of what causes pain and the factors that contribute to the experience of pain, for example stress, difficult family relationships or trauma.  I was experiencing daily pain, and medical interventions were not sufficiently helping me.  I had experienced several episodes of physiotherapy care but despite this, and other medical input, I did not understand pain and what might be done to ease persistent pain.
Around four years after my accident I had an episode of care undertaken by Consultant Physiotherapist Matt Low, and it was through this that I started my journey of understanding pain.  I have written about that episode of care, which followed a Cognitive Functional Therapy approach, and for me was life changing, HERE .
As well as explanations from Matt, I started to learn about pain by reading ‘Explain Pain’ by Lorimer Moseley and David Butler.  Understanding more about pain was hugely important to me in terms of understanding my own condition and better managing it.  With Matt’s help my new understanding enabled me to put into practice better pain management, which I have written about HERE .
However, Explain Pain wasn’t enough for me to fully understand MY pain.  It was a good start, but I struggled to completely fit my own pain situation into the descriptions given.  I needed a better understanding.
My long journey to sufficiently understand MY pain has at times been rocky, and to be honest at times emotional.  I have struggled to fit MY experience of pain into the various models and explanations put forward and have only recently, again with the help of Matt, come to an understanding of pain that I think fits with MY experience of pain, and which therefore I can ‘buy into’ and move forward with.  I hope that this better understanding of pain will help me be able to further improve my life with pain. I think it will.
My pain
At this point I think it would be helpful to give a brief description of my pain situation. I hope this will help to start to explain why I have found it difficult to fit my pain experience in with some of the models and explanations of pain put forward.
My pain follows a manual handling accident ten years ago, in which a herniated disc damaged my sciatic nerve.  I underwent back surgery eighteen months later, but the nerve damage proved permanent.  I have been on a long journey of rehabilitation and ‘recovery’.  At the start I was basically unable to walk, sit and was in constant severe pain.  I have quite gradually improved over the years.
For many years following my accident I experienced significant back pain and significant neuropathic pain.  I currently experience mainly neuropathic pain with some back pain.  I think it is my experience of neuropathic pain that has made it particularly difficult for me to fit my personal pain experiences in with the pain explanations put forward by others.
Rather than writing a blow by blow account of my pain and how it currently affects me, I have created a MindMap below.  As it is the neuropathic pain which currently has the largest impact on my life, and which has caused me the most problems when understanding pain, I have only included that part of my pain.
Unfortunately, you can’t tell from the MindMap how much pain I have, or how often I get each of the symptoms.  I can’t yet think of an easy way to show this.
My difficulty with pain explanations
I need to start this section by saying that although I personally have some difficulties with some of the published explanations of pain, and some of the analogies used, this does not mean that they aren’t useful for other people.  Everyone’s experience of pain is different, as are their learning styles, and ways of thinking.  When I was teaching I often used to have to explain things in a totally different way to one child than another.
When you live in pain and you read something about how pain works you try to fit your personal pain experiences into what you are reading, or at least I do, and when you just can’t fit your experience in then this can lead to confusion, frustration and despair, or at least it has for me.
Several books, articles and videos explain that your brain makes pain when it concludes your body tissues are in ‘danger’ or under ‘threat’ and you need to do something about it.   I have found the concept of ‘danger’ or ‘threat’ to be too extreme for me.  I haven’t been able to reconcile this with my experience of pain. For example, when I am sitting down my sciatic nerve becomes irritated and will produce pain.  As far as I’m concerned, no part of me is in ‘danger’.  The concept of ‘danger’ just doesn’t make sense to me for most of my pain.
I fully understand that there are psycho-social factors related to the experience of pain, and to be honest this was probably the most important new learning for me when I started to learn about pain, but for me some of the explanations of pain seem to over-emphasise the psycho-social factors, and hardly mention bio factors, again causing me to have a mis-match between my pain experience and what I am reading.
I have a damaged sciatic nerve which is an important, and I think dominant, factor in my experience of pain.  Like everybody else, my psycho-social factors vary from day to day, and to some extent vary within each day, and I am sure affect my overall experience of pain.  However, when I think about, for example, the severe bolts of pain I experience when I am asleep, I find it difficult to rationalise that pain experience with explanations of pain that emphasise the psycho-social factors way above bio factors.  I know from experience that there is a strong link between the severe pain I experience during the night and the amount of sitting I have done during the day (and therefore physical irritation of the sciatic nerve) but only a weak link, if any, to my day to day psycho-social variance.  Having such a strong emphasis on psycho-social factors in explanations of pain, and often very little mention of bio factors just doesn’t make sense to me for my nerve pain situation. It creates a mis-match between my pain experience and what I am reading.
Another diffficulty I have had with common pain explanations is with the idea that ‘pain doesn’t equal damage’.  Although I have in loose terms found this idea helpful, I have had to re-formulate it in my mind to ‘pain doesn’t equal MORE damage’.  If my sciatic nerve had never been damaged, then I wouldn’t be experiencing sciatic nerve pain, and so of course to me my pain is directly linked to my nerve damage, and always will be.
I have also experienced difficulties with published explanations of pain when they have said that anyone can overcome pain and lead a pain free life.  I believe my sciatic nerve to be permanently damaged, and likely to cause me pain for life.  I may be able to manage that pain, and hopefully reduce it, but unless someone can convince me otherwise I don’t believe that improving my life in terms of psycho-social factors, or ‘turning down the pain volume control’ is going to enable me to live pain free.  Obviously, I hope I’m wrong in this belief, but this has caused another mismatch between my pain experience and what I have read.  This mismatch has caused me confusion, and on occasions distress.
I have desperately wanted to fit my experience of pain into the frequently put forward explanations of pain, but they just don’t work for me, certainly not in their entirety.
I have a strong personal need to understand my pain enough such that I can use that understanding to work out further ways forward with my pain, and, to put it bluntly, to stop being knocked sideways every time I read an explanation of pain that just doesn’t match my personal pain experience.  I have therefore looked, again with the help of Matt, at the more recent thinking behind pain.
MY understanding of MY pain, based on the Predictive Processing Model, the Mature Organism Model and Dispositionalism
My improved understanding of MY pain is based on the Predictive Processing Model, the Mature Organism Model and Dispositionalism.  I’m not a clinician, or a pain scientist, or a philosopher, and so I’m not intending to try to explain these models here. The following links can be used to reference the main articles that informed my thinking (combined with input from physiotherapist Matt Low).  I’ve also watched some YouTube videos of Mick Thacker and Matt Low presenting information about these topics and included those links.