Together with Pete of The Pain Toolkit, I have been talking pain. This is a simple way of getting across the key messages about pain in bite-sized videos.
The first chat was based on the 5 question challenge when Pete asked me how I ‘got into pain’, my story in other words, and then what I say to people who are seeking the quick fix, the future of how we will deal with pain and the role of social media. Today we dug down deeper into dispelling the myth of the quick fix as an option.
In brief, overcoming pain is one of life’s challenges. Embracing this as a problem to solve by living one’s best life delivers many possibilities. This turns the traditional thinking, which has not worked (otherwise chronic pain would not be the No1 global health burden), on its head; i.e. we get back to living by living, not waiting for something to happen, or relying on hopes. Instead we follow a route of mastery, creating lasting and positive change, achieving results and maintaining a consistent course towards a desired outcome. This IS the model of success and we can apply this here, in addressing pain.
So, there is no quick fix, instead a route forwards where we fill our lives with the good stuff! We use our natural resources and strengths, and become resourceful. Everything you need is right there, and once you release yourself from the old, limiting beliefs and conditioned thinking (I can’t…I won’t….tomorrow etc etc.), you can start taking steps towards success. Is this a pain-free life? Does it mean being ‘happy’ all the time?
Pain is part of life. The pain you may be feeling has persisted and is not indicative of a tissue issue or pathology in many cases. Instead it is an on-going protect state as more and more contexts and situations generalise as being a threat — even though they are not. We have to actively re-train this, gain control over our mind rather than the mind controlling us, because once we decide to commit to consistent practices that build health, wellness and joy, they shift us into a different state, or chemistry. That is how we overcome pain. The more we focus on treating pain, the worse the outcomes. The more we focus on the person living well, the better the outcomes — for what we focus upon governs how we feel and where we put our energy. What do you want? Where are you going to pout your energy? Into a life full of joy? Or a life full of pain?
It sounds easy when you put it like that! Of course it is a challenge and there are many ups and downs. But you do not have to let that get in the way of you deciding to commit to a new path, one that you follow to gain wins and success in all areas of your life — again, because you decided to. How often do you feel happy, just because you can? Now you can use that as a daily practice!
So, onwards we go, as this is the only direction of travel. We build our ability to change state into that of excitement, determination, joy, love, compassion and all the many other states .We can get into such high energy states by moving, breathing, visualising, connecting and many other simple day to day practices. It merely takes the decision to do so, the development of a routine and practice, or repetitions, just like strengthening a . muscle.
More answered questions to come! You can email us your questions (firstname.lastname@example.org) or come to twitter and tweet @painphysio
The next CRPS specific Pain Coach Workshop is coming up in Bath — link at the bottom for tickets (free). We had great feedback from the last workshop, but took note of people’s comments and extended the session. This one is longer so we can really tuck into some of the practices, and have the experience together.
The Workshop is by design a positive experience. We very much focus on what we can do and the choices we can make to lead the best life.
Together with specific practices that are important to address CRPS (and other painful problems), we will be looking at the skills that are known to be key for a healthy life. These skills are the best buffer for life’s challenges and hence play a foundation role in overcoming pain. And that is what we are seeking to do. Not ‘managing’ or ‘coping’, instead overcoming and moving to a new level.
The final part of the session is about how we can implement and integrate the practices into our life so that you can make a plan that you can follow in your world and reality.
A story of courage, perseverance and a ‘can-do’ attitude to life
My name is Helena, I am 20 years old and from London. I developed CRPS in my right leg as a result of a kayaking accident in 2013. My CRPS deteriorated very rapidly and suddenly in February 2016 leaving me in a wheelchair.
I missed kayaking a lot and I was bored of being stuck in the house. So I started researching Paralympic sports which is when I came across para or adaptive rowing. So in September I had a taster session at the Royal Docks, I enjoyed it so much that I was introduced to the Royal Dolphins and London Youth Rowing (LYR). The Royal Dolphins are a very small disability rowing group coached by LYR. Over the coming months my condition slowly started to improve and within a few of months of starting rowing I was waking unaided although still in pain.
The Royal Dolphins compete in the Great River Race every year and I was quickly asked if I wanted to join the crew for this years race. I was in two minds my head was saying no my heart was saying yes. After deliberating the idea I said yes.
So on the 9th of September I completed the Great River Race. The race is London’s river marathon and is 21.6miles down the Thames from Millwall Dock to Ham in Surrey.
We started at Greenwich pier where our boat (called a Cutter) was docked. The river was very rough and we were towed by our safety boat to near Millwall Dock, this is where we started our journey, passing a large ship which marked the start line. The bridge count began, there was 29 bridges between us and the finish.
The first big landmark was Tower Bridge and it was amazing to go under such a historic bridge. We rowed at a steady pace and soon enough we were going past the Houses of Parliament and Big Ben.
Battersea Bridge marked the halfway mark and by this point my CRPS leg was starting to complain. I kept moving my leg trying to get comfortable. I was determined that this was not going to stop me, there was no way I was letting my crew down. Knowing we were halfway the adrenaline started pumping through my body and I had a burst of energy.
This burst of energy got me all the way to Chiswick Bridge, we had been rained on and we were now starting to tire. My CRPS leg was going all kinds of colours, my foot was swelling slightly and my lower back was killing. We kept up the steady pace as we needed to get as close to Ham as we could before the tide changed.
Unfortunately the tide changed a few miles from the finish, the water all of a sudden felt heavy and we we were having to row harder to keep the boat moving. By this point the surroundings were very rural and there were not many people around.
There was a sigh of relief when we eventually went under Richmond Bridge, the last Bridge! We all came together and rowed the best we have ever done, over-taking several crews who had gone out too fast. We could hear the tannoy at the finish party and the gun went, we had finished!
It was the hardest but most amazing thing I have ever done. It has only just sunk in what I achieved. If you are a CRPS sufferer reading this, if you take one thing from it, let it be this, you can do anything with CRPS, you’ve just got to adapt!
You can follow Helena on Twitter here and her blog here.
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There can be a place for interventions in a rounded treatment programme for CRPS. However, like drugs, they do not give the individual the opportunity to learn about and transform their pain. Instead it is an attempt to change the symptoms without addressing the reasons. In other words, a short term, possible fix. It is understandable why someone would go for that option. The responsible clinician will ensure that the person continues to work upon their practices together with the interventions and drugs. ‘Is this what really happens?’ is the question.
Technology is advancing all the time and hence in society is perhaps an implicit expectation that a ‘machine’ will solve the problem. Clearly interventions have not solved this problem, the numbers of sufferers are ever-climbing. I am not sure that they ever will be more than an occasional contributor because the only way a person can really create a meaningful life is by doing just that.
You get back to living by living, not waiting for something to happen or for someone to do something to you. There maybe parameters to work to and practices to practice, but engaging with what you expect of you and your life is the way to gain success. Drugs and interventions may be useful along the way, but not as the main thrust. To offer such a way forward is not giving the person the opportunity to reach their full potential.
To offer drugs and interventions as the way forward is not giving the person the opportunity to reach their full potential. Only by understanding their pain will the person see their own potential to get better
We should be keeping an eye on the balance of funding for research. Is there the necessary funding for study of the condition versus funding for possible interventions and technology? Who is providing the funding? This was an interesting and relevant observation from one of the speakers.
What about the immune system?
The mid-morning session was of interest to me. I find the immune system fascinating as one of the important systems that play a role in protecting us. What goes on in the immune system in CRPS? Are we seeing an over-inflammatory response in people who suffer the condition? How have they been primed and how has their neuroimmune system learned to protect and heal over the years? Dr Andreas Goebel and Professor Frank Birklein delivered very good scientific talks on the topic, offering their insights into the relevance (see links to articles below).
There is a search for sub-types so that treatment can be tailored for these categories. The question is whether we can ever reduce the immeasurable number of variables that constitutes an individual with their unique story into a sub-type? Whilst studying the microbiology of inflammation in CRPS may deliver some important insights into parts of the condition, we must maintain a picture of the whole and remember the person. Chemicals, receptors, signalling pathways are all fascinating (I do love looking at them) but the patient can rightly say: ‘so what?’. There must always be relevance for the person: “What does this mean for me?”.
So what is the relevance? If we can understand these pathways and the role of inflammation, develop ways of determining their influence and how this manifests as the lived experience, we could possibly develop pharmacological treatments that help. Again, this does not replace the need for the person to learn about and transform their lived experience but it could help. It appears we have a long way to go. Additionally, is the fact that any agent that has an effect upon the immune system is likely to have other effects, often unwanted. Chatting to a rheumatologist, she made it very clear that extreme caution is needed in using an ‘auto-immune’ approach to treat CRPS because of the possible side-effects.
Here are some of the studies that are relevant and were referred to:
The posters presentations were punchy, which is exactly right. It is a skill in itself to keep to your allocated time, allowing all speakers to tell the audience about their work. With the advent of TED talks and this becoming the accepted way of presenting your point, it keeps the delegates on their toes and fresh for the information.
Janet Bultitude won the poster competition for her work on the spatial elements of CRPS.
The afternoon was completed with a discussion about amputation and whether this should be a treatment option for people with resistant CRPS. This could have been a highly emotive subject but in fact there was a very sensible and reasoned conversation. Examples were given when amputation was necessary, e.g. when the limb was gangrenous, including Victoria Abbot-Fleming from Burning Nights giving an account from her perspective as a double amputee. Just as Day 1 was rounded off with real experiences, this was true of the second.
With final comments and thanks from Dr Dominic Hegarty, the feel was certainly one of achievement. The conference met its expectations in the main, drawing an international crowd, a host of top names and talks that covered the ground. For me though, there was a missing ingredient: the actual people whom we have been discussing, those suffering CRPS. This is a consistent omission at conferences and one that I feel misses a great opportunity for important conversations.
At the SIP 2017 conference in Malta there was equal participation in all areas, including the working groups, by all delegates: patients, patient representatives, clinicians, policy makers, MEPs, scientists and charities. All contributed meaningfully so that the complete story was told with equal contribution. Opportunities and possibilities resulted in positive work being done at the conference, rolling onto action in Europe. Sadly, on return to the UK there was no change. No-one I spoke to had even heard of SIP let alone the work. We are embarrassingly behind.
Change is inevitable, but which way?
Undoubtedly, there is positive work being done in the UK but is it fragmented. Despite having organisations such at the British Pain Society and the Pain Coalition, again most people have never heard of them and have no idea what they do. When I say people, I mean those that need those organisations to function: patients and their families. There is little point in having societies and working groups if the beneficiaries are not receiving answers to their ‘so what?’. This must change. The change will occur in society and has started. This is the reason for UP, to drive such social change because this is where the problem of pain is embedded.
Returning to CRPS, one of the distinct points to come from the conference is indeed the complexity. With different research groups looking at different elements, of course we must draw it together to explain the 1st person experience: pain, altered body sense, altered perception, altered emotions, altered cognition, altered movement, sensitivity, the ‘what it is like to have this’, what it is like to look at my limb that is part of me but does not feel it and much more. In 2011 I wrote a blog entitled ‘It feels weird‘, one of the features of CRPS that is often described to me by patients. Frequently they would tell me that no-one had listened to this before and hence they were nervous about telling me until they understood that I wanted to hear about it!
We are complex. As I have already said elsewhere, there are innumerable variables that make each moment unique and within that our experience is unique and we are unique. You cannot wholly control for that reality. However, I believe that there is great hope and that includes using all of the work we have heard about over the past few days. There was frank honesty about what is known and what works as well as what hasn’t yet. Perhaps the complexity of existing is the reason why and we may not have answers anytime soon. But, and this is a BIG but, that does not mean that people cannot get better. They can, You can. We don’t fully understand consciousness yet but this does not stop us from experiencing and manipulating it. Pain is one of the best examples of a conscious experience together with love, and as we get to grips with this, we will understand pain more and more.
People can get better
Pain is one of the defining features of CRPS. To understand pain means that the person realises and actualise their potential. Pain is characteristic of the person and hence unique to them. To change pain, which we can, we have to change, which we can. Each person has great potential that is often untapped. We have opportunities and possibilities when we are open, learn and use practices to steer ourselves onward in a chosen direction. We begin by asking ourselves ‘what do I want?’. The answer to this is not ‘I don’t want pain’. Think about what you want, not what you don’t want. This is the beginning.
I would love to know how CRPS Cork will inform practice as from the following Monday morning. It is unlikely we will ever really know, but this is the real measure of success. How will this conference have an impact upon society and the people suffering CRPS? Now that would be an interesting question to answer.
what do we currently know about the causes of pain?
what can the person in pain do to overcome their pain?
Pain is one of the commonest reasons to seek help. And we are not only talking about back pain or neck pain, instead thinking about all the circumstances and conditions that feature pain. Digging deeper, whilst the pain is unpleasant by its very nature, it is the suffering that drives the act of going to the doctor. We can even take this a stage further and suggest that the causes of suffering result in consulting with the GP. For example, the person who cannot work, cannot play with their children, cannot play sports etc. It appears as if life’s choices have disappeared. By definition, suffering refers to the loss of sense of self, and indeed the person with persistent or chronic pain can feel such loss.
The existing understanding of pain has taken us a long way away from the biomedical model. The biopsychosocial model has gained some traction but the predominant approach continues to be driven by the search for an injury, a pathology or a structural explanation. For many years it has been known that pain and injury are not synonymous ~ the famous paper by Pat Wall was published in 1979:
“The period after injury is divided into the immediate, acute and chronic stages. In each stage it is shown that pain has only a weak connection to injury but a strong connection to the body state.”
Pain features when we are in a state of protect in the face of a perceived threat. The intensity of the pain relates to this state and not to the extent of tissue damage. Pain and injury are fundamentally different and hence any explanation or treatment for pain based upon the thinking that a ‘structure’ or biomechanics is to blame is at odds with our understanding of pain. In fact, it is this misunderstanding that contributes significantly to chronic pain being the number one global health burden. This can and must change, which is the raison d’être for UP | understand pain.
~ understand pain to change pain
This being the case, this workshop will be a brief look at this enormous societal issue, a public health concern of vast importance considering the massive costs and immeasurable suffering. Not only will we review current thinking and understanding, we will consider the role of the GP and practices that can be readily used.
understand pain yourself
know your role
how can you help the person understand their pain?
setting the person on the right course: what is their vision of success?
practices you can choose to use in clinic
This overview is based on the Pain Coach Programme. The programme delivers results for people who make the decision to commit to practices that bring about change in a desired direction. They understand that we are designed to change and that we have great potential to be harnessed and used to overcome pain and live a meaningful life.
1:1 Pain Coach Mentoring: for clinicians who choose to pursue understanding pain to a greater level together with the practice of Pain Coaching.
Persisting pain pervades all aspects of life, thinking, feeling and doing. Pain affects decision making, with tendencies to avoid or sometimes overdo and lead to a flare up. This is very individual, and each person will have their stories to tell about fears, worries, beliefs and what they did.
The Pain Coach Programme gives the person knowledge about their pain and skills to make moment to moment decisions about what is best to think and do at any given moment. In effect, the Pain Coach is coaching the person to become their own coach! The person is with themselves at all times, and therefore needs the knowledge in order to make the best choice. And this choice is all about taking an action that takes you towards your vision of where you wish to be. Where you wish to be is in the answer to the question ‘why do I want to get better?’
One of the strategies I coach people with persistent pain is called UBER-M. Cheesy perhaps, but easily remembered. One of the first things we do in the Pain Coach Programme is to help the person understand their pain, this to reduce fear and increase engagement with what needs to be done to overcome pain. You cannot solve a problem unless you understand it. But it is not just telling the person about their pain, it must be a working knowledge that can be applied: what do I know, what can I do now that is wise and healthy? This is the ‘U’. And below are the others:
U – understand your pain
B – breathe (mindfulness, relaxation)
E – exercises (general exercise, specific exercises & training)
R – recharge (we need to have enough energy to engage with the programme, with others, at work etc)
M – movement is congruent with health, but you need to develop confidence to move