The Shape of Pain ~ a show about the pain of CRPS and relationships

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“One woman attempts to articulate her experience of physical pain. Pain with no apparent cause. Also, she’s met someone, and they want to make this work. Words and an original sound score combine to create an explosive dialogue about love and perception. An experiment in how we talk about pain – and if we ever do that in a way someone else can understand.” China Plate

To briefly set the scene, this is a one-woman show that attempts the most challenging of tasks, to communicate pain. For many years, I have listened to people as they try to describe their pain, providing an open forum for them to use their own words, descriptions and illustrations. Of course, none fully capture the lived experience and so we must acknowledge this limitation whilst absolutely validating what the person says. Carefully documenting the language, phrases and comparisons, we must treat the narrative with care and compassion, listening deeply and equally observing how the words are delivered—gestures, facial expressions and subtle posturing.

And so, The Shape of Pain seeks, in an experiential manner, to get over to the audience what it is like to be in pain of a chronic nature as a feature of complex regional pain syndrome (CRPS). For those who are unsure, CRPS can be a painful condition of an extreme nature. There are other signs and symptom as well, which out of necessity define it. There are many painful problems and we must be able to differentiate to deepen our understanding through enquiry. The Budapest Criteria set out to do just that.

For me, it was a remarkable performance by Hannah McPake, delivering the narrative with authentic emotion, seeking to engage the people in the room. I am not a theatre critic so I can only comment on the technical aspects as an amateur, so I will stop there. However, as a clinician with a purpose to drive social change with regards chronic pain, and as a member of the audience, I was somewhat torn between the two. Flitting in my (embodied) mind, just as when we were invited to explore our perception of the Necker cube, I was critically appraising the way pain was being described, then drawn to the sensory experience of being present and back again.

In a conversation afterwards with some of the people who had watched the play, there was a feeling that we had definitely had an experience. You are not simply sitting and watching. You are absorbed by force—the sounds, the stage, the lights, the performance, and the projection of the script on the panels, which to me represented the imprisonment that some perceive and describe as their sense of agency is seemingly squeezed from them. In the discussion group, we all appeared to subscribe to the idea of pain having a shape. Job done!

Knowing that people suffering with particular sensitivity, and that is not just those with CRPS, will react protectively as their brain predicts a possible danger, means that the play would likely be provocative of pain. This point is made clearly in the script, which you can purchase, and a reason for an actor playing the part because of the effects of the words. Many people have told me, usually when prompted, that watching someone move, thinking about movement, certain smells, sounds and other ‘stimuli’ bring on the pain. When you understand pain, you know why this happens and how very real it is, together with changes in the sense of size of the limb, perception of the world and the sense of self.

Chronic pain is the number one global health burden. There are huge financial costs for society to bear, and immeasurable suffering for individuals. With the numbers of people affected by what we can safely say is a public health issue of major concern, you would expect a play such as The Shape of Pain to be sold out in a sizeable theatre as society tries to gain a grip on the problem. The question at large is why, with the costs in the billions each year and the impact on social function, is there so little accurate and impacting coverage? Most articles describe pain in the wrong way, the ‘old way’, which is distinctly unhelpful at best, and at worst keeps people thinking the wrong way. At the moment I have no answer to that, but instead focus energies upon delivering the right messages and the latest understanding to those in need.

The Shape of Pain is a significant contributor to the narrative of the most impacting of pains. A main feature of the tale is relationships. That of the person embodying the pain with the pain, the person in pain with a loved partner, the person in pain with the audience, and all of these vice versa. Undoubtedly, with pain lurking and then dominating ‘me’, there is impact on relationships. We are social creatures and relationships are important for our health, whilst also being the source of great suffering if we are not careful and nurturing. It can be more challenging to nourish a relationship if you are suffering pain persistently, as the Shape demonstrates frankly, but equally one can gain strength.

I will not capture all the angles within this short blog. Yet I hope to transmit several key messages of hope whilst fully applauding the team behind this play. They have created a brilliant piece of intimate theatre in which you cannot fail to feel deeply engaged as you run from emotion to emotion until the rather disquieting, darkened end, which is wholly appropriate. However, in a selfish way, I am pleased that the venue is smallish and intimate, because you feel so much more ‘in the room’ with the character.

On hope, there has been great advance in our understanding of pain, primarily from the getting together of neuroscientists and philosophers. This has resulted in better questions, with new insights for answers that are most helpful in describing pain to people so that they can give meaning to their lived experience. From there, this understanding informs many practices and tools that can be used to manage the painful moments, and overall seek to improve one’s life with a clear direction and steps to take. We are designed to change, impermanence making life viable, with each moment unfolding as fresh and new. This in mind, we can choose an approach, establish our purpose and pursue it in the best way that we can.

Here are 5 facts about pain (there are many more):

  1. Pain (a subjective feeling state) and injury (objectively observable and measurable) are not the same and they are not well related
  2. Pain is part of the way we protect ourselves
  3. There is no pain centre in the brain. And there are no pain signals or pain chemicals. We have systems that have a role in protection and survival — e.g./ nervous system, sensorimotor system, immune system
  4. Pain is an inferred state that motivates us to take action to address a need in our body or our world
  5. Chronic pain does not ‘start’ at 3 months. The reasons why someone experiences on-going pain are more to do with prior life experiences of protection, genetics, early uncontrolled pain at the time of the incident and perhaps gender. There are and will be many more factors.

A brief summary of the modern approach to chronic pain

As I have said, the first step to successfully managing pain moments and carving a new way forward, is to understand your pain. This is how any programme should begin, with practical knowledge and ‘know-how’. To get results, we have to shift our thinking and approach as much as using the new and necessary practical tools and actions each day. This does not mean ‘you’ have to change as a person. Instead, you are encouraged to use your existing strengths and successful styles (you will have had many successes in life, overcoming challenges) to focus on your desired outcome and the steps to take.

There are specific exercises that need to be practiced in a dedicated manner, just like learning a musical instrument, general principles to follow to gradually engage with chosen and loved activities (getting into flow), and thinking tools to focus, create calm and build wellness, our greatest buffer to life’s ups and downs. The Pain Coach Programme contains all of these components together with many other tools and practices to draw upon to embody and live a meaningful life. There is not any single practice, instead an approach that embraces what we know about being a conscious human being.

Managing the painful moments with increasing skill transforms these episodes into opportunities to head in the chosen direction. Like learning to sail a boat, we learn a great deal when the waters get choppy, and we may even capsize! But then we can focus upon rolling the boat over again and setting sail towards that desired outcome. This may happen over and over, but we can choose an approach steeped in doing our very best as we seek to master ourselves. The principles of mastery certainly apply here. In facing these challenging moments as they arise, we create new habits, replacing those that do not work, but always in line with what we want to achieve. Stringing these together with the skills of being well and specific training, we can build a foundation of understanding, compassion (especially self), and know-how that can be built upon.

This is truly an exciting time as our learning gathers pace. My role and purpose is to be a conduit and distill the great work being done by many across the globe, into tangible and practical tools that each and every one of us can use to get the best results.

The Shape of Pain is on now at The Battersea Arts Centre (where I had some delicious potato wedges in the cafe!) until 10th March. If you are interested in pain or dramatic theatre or both, this is definitely worthwhile seeing. Note though, if you are a pain sufferer, it may be evocative for some of the reasons outlined above. In knowing this though, you may choose to go along for the ride.


For further information, contact me at painphysiolondon@gmail.com

CRPS specific Pain Coach Workshop for people with the condition and their carers

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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.

I hope to see you there!

Click here for details and tickets

Helena’s story

An excellent story of achievement from Helena

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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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CRPS Cork 2017 Day 2 Observations and onwards

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Cork 2017

Does technology do it? 

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).

“So what?”

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:

Complex regional pain syndrome: An optimistic perspective

Inflammation in cold complex regional pain syndrome

CRPS: evidence for warm & cold subtypes in large prospective clinical sample

A prospective, multisite, international validation of the CRPS Severity Score

Association of catastrophizing with interleukin-6 responses to acute pain ~ https://www.ncbi.nlm.nih.gov/m/pubmed/18778895/

Cutaneous immunopathology of long-standing complex regional pain syndrome

Treatment of Longstanding Complex Regional Pain Syndrome with Oral Steroids

Genome-Wide Expression Profiling of Complex Regional Pain Syndrome

Local anaesthetic sympathetic blockade for complex regional pain syndrome

Increased prevalence of posttraumatic stress disorder in CRPS

Autoimmunity contributes to nociceptive sensitization in a mouse model of CRPS


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.

SIP 2017 ~ chronic pain is a societal issue
SIP in Malta 2017

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.

Onwards.

CRPS 2017 Conference in Cork

CRPS UK charity for complex regional pain syndrome

Richmond is heading to Cork with the CRPS UK crew

I am looking forward to the CRPS Conference this week for a number of reasons. The primary reason and purpose is to connect with others who want to drive social change in terms of pain. I will be representing UP of course, and encouraging people to join our community as we forge forward with enterprising work to change the way society thinks about and addresses pain.

Pain is embedded within society and hence is a social problem. You could also call pain a public health problem, with both terms more accurately defining the nature of the issue. Pain is not a medical problem.

Conferences for particular conditions are often dominated by clinicians and scientists. Whilst these groups must be there, so should patient representative organisations, policy makers, MPs and others who must play a role in the much needed change. The best example of this in action was the recent SIP conference in Malta when every group was present to discuss how we can move onward and the next steps.

Sadly, I have neither seen nor heard any positive reverberations in the UK from this key meeting. All the work is going on in Europe. I hope the UK will wake up. I will certainly keep nudging until we do together with my friend and co-conspirator, Pete Moore. Coming soon, we have some short videos of recent conversations we had about pain ~ sign up to the UP website and you’ll receive notification.

The CRPS conference will be a chance to talk to researchers about their new findings. Naturally I can read their papers, but the chance to chat and connect is vital. We need much more interaction between those in healthcare and those doing the research. The science must be distilled into something that can be consumed by all, which is another of UP’s purposes.

I will be tweeting from Cork, so keep an eye on Twitter @painphysio and follow me if you don’t already. Blogs will appear here and on my ow site: Specialist Pain Physio and on Facebook

 

Ellen’s Running Blog ~ a great story!

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Ellen training for Royal Parks 1/2 Marathon 2017

This year the UP running team has Ellen taking part in the Royal Parks 1/2 Marathon raising awareness and money for Understand Pain and CRPS UK. Ellen has CRPS yet has made remarkable progress in her life. I was thrilled when she agreed to take part and join the #UPandrun team!

Here is Ellen’s first blog about training.

Running Blog Take 1

Bio About Myself

Hello Reader! My name is Ellen Williams and this blog is about showing people my unordinary life. I have never been good at writing about myself so I will just start with some key facts:

Name: Ellen Jade Williams

  • Age: 22
  • Hair Colour: Blonde
  • Eye Colour: Green (with flecks of yellow in the middle)
  • Favourite Food: Strawberries
  • Favourite Animal: HORSES
  • Hobbies: Horse Riding (although having your own horses makes it more of a lifestyle than a hobby)
  • Occupation: Yard Manager (my own yard), Yard hand, Office Workers (for my parents business)
  • 3 Qualities: shy, smiley & sensitive
  • Any unusual points: I have CRPS (Complex Regional Pain Syndrome) in the left side of my lower body.

My CRPS story is long and I do not want to bore you so again I shall give you the key facts. In April 2010 I went to South Africa with my school for a Sports Tour. It was the best holiday of my life but unfortunately I came home injured after some swelling appeared during one of my matches. I was told it was just some soft tissue bruising so I had a few weeks off then I carried on. The pain got worse and by the end of June I’d lost mobility in my left knee.

Finally I went to see a consultant who had me booked in for surgery 3 days later. I had a routine arthroscopy in my left knee, which found a piece of bone stuck in my knee joint which had also damaged some of the cartilage. That was sorted and I began to heal, just a little slower than normal.

By the December, I had deteriorated drastically and was back on crutches unable to do physio. January and February 2011 was full of pain, doctor appointments across the South of England, scans and uncertainty. 3rd March 2011, my consultant told my parents and I that I had this neurological disorder, which was incurable and may stay with me for the rest of my life. Confusion and sadness do not even begin to describe the feeling of that day.

I did physical physio for about two years to try and “flip the switch back”, as people describe it. This got me so far but it began to inhibit me more that it was helping me so I had to stop. After getting through my A levels and receiving more disappointing news from doctors, that there was nothing else they could do, my mum realised that I needed something else, something different! Which is where Richmond steps in. I have been seeing Richmond for over 4 years now and I could never write down in words how much I’ve learnt and improved in that time.

In the last 18 months I have finished university, moved back home and started full time work, which took its toll. After having it confirmed that the CRPS had spread into my left ankle I had back injections in January of this year. These once again, completely changed my life and as cliché as it sounds I feel like I have been given a second chance and I am determined not to waste this time as we are not sure how long it will last.

So when Richmond asked me if I would run the Royal Parks Half Marathon, I thought why not. It may not be easy but one quality I possess is determination. Determination to prove others wrong but also to prove to myself that I am “normal” but in my own way! Both my Dad and I are running jointly for UP and CRPS UK, which are two very important organisations for me so I hope this will show people that everyone has demons but how good your life is depends on how you decide to live your life. Please donate and spread the word of CRPS!

30th July 2017

After having some time off due to weather, birthday celebrations and pain I suddenly felt in the mood for a run, even after 6 hours of poo picking fields and mucking out stables! Although I was in the mood for a run, that does not mean I was not also nervous. I hadn’t been out for about a month and suffering such a big flare up the weekend before was always going to add more nerves.

A lot of my other runs I have put a point where I would turn around however today I didn’t. The issue with my disorder is that, people think I’m joking when I say “It has a mind of its own” but I’m really not! My CRPS and I may share a brain but we definitely do not think the same so I know I may think “I’ll aim for this point but will try to push further” but my CRPS will think “Right you said your going to that point, so I will give you pain if you go past it”. This is why today I decided to just run, whether I made it 1 mile or 10 miles it didn’t matter as long as I enjoyed the run.

After the first 10 minutes of agony (which always happens, like the CRPS is trying its hardest to stop me) I settled into my normal running beat and through the deep breathing, even managed to put a smile onto my bright red face!

31st July 2017

I felt so good about my run yesterday until I got out of bed this morning and realised that my hamstrings were as tight as a brand new elastic band! What made the pain worse was knowing that I was going to see the personal trainer tonight and that when I told him, he would make me stretch them out properly, which is more painful than just walking! This is the fourth time I’ve seen the personal trainer but it is already starting to make me enjoy being in a gym again.

After my diagnosis, I was told my best chance of “defeating” the CRPS was to do physical physio to break the on going loop that was theoretically happening in my head. I will always be grateful for my 18 months of physical physio because without

it I doubt I would be able to walk without pain, most days, right now however I should never have been told this method would “defeat” the CRPS. Living with CRPS is complicated and confusing as one minute you will look completely healthy but the next you can be on the floor unable to move but that does not mean it cannot be managed.

Although I am good at managing my CRPS now, self-consciousness about it is still something I struggle with. Even though it is a invisible disorder, I face a daily struggle of thinking everyone is staring at me because of it. This was made worse during my physical physio sessions when I really did have people staring at me because I was crying in pain. The more it happened the more uncomfortable I became in the gym, to the point where I didn’t step foot into a gym between stopping my physical physio and starting with the personal trainer, which is roughly about 4 years.

I was frightened about going back into the gym bit there are many differences between the two experiences. Firstly, in the new gym it is just the personal trainer and myself, which means I don’t need to worry about anyone “staring” because there is no one to stare. Secondly, now I am not trying to break a loop, I am trying to better myself as well as I can so if I do struggle with something, I can stop and try again at a later date and it doesn’t matter. Lastly, compared with 4 years ago I am able to deal and understand my pain a lot better, which means overall I can enjoy the experience more as the pain is not as bad.

Four years ago I never thought I would walk out of a gym, feeling good about myself again, but I do now and it gets better each time even if the hamstring pain gets worse!

1st August 2017

Well they say that things come in threes! Today it was the day for physio and I honestly do not know how I walked today because between the run and gym the last two days my leg muscles are screaming everytime I walk. My physio sessions are my time to show off any improvement I’ve made within a few weeks, no matter how small or silly it might seem to others (yes, I did actually jump up and down for joy the day I told my physio I could walk down the stairs normally again!) I’ve been seeing Richmond for 4 years now, but I continue to go because each time I do go I learn more about my disorder and how to manage it. The sessions also give me confidence to try things that I find difficult or painful again for example an exercise I had to stop doing last night at gym because my knee did not like the movement.

When I was doing the kettle bell swings last night, my knee felt like it was grinding together. So when the personal trainer commented on how well the knee was dealing with the movement I quickly replied “No it isn’t!” It frustrates me when I come across something that is difficult because I know there is nothing wrong with my knee but the pain is still real. I talk it through with Richmond and we come up with a few methods to help lessen the threat of the exercise, which means hopefully I should be able to carry out a kettle bell swing in a few weeks!

5th August 2017

So today rather than being physical myself, my family and I travelled up to London to watch the World Athletics Championships. It was amazing being back there again after the hype of 2012! We were lucky enough to see both Katarina Johnson-Thompson (my favourite athlete!!) and also Mr Usain Bolt himself! We had different seats for the morning and evening sessions however that did not seem to matter because where ever we were Katarina was near us, which made me extremely happy!

Watching her high jump was hard as her clear upset at coming out of her main event so early was obvious but that did not stop her. Watching her then win her 200m race was incredible and relatable. Anyone with chronic pain will know what it is like to face defeat in things that we were once good at but just because you’ve been defeated that day does not mean you’ll face that same defeat again the next day. Dealing with chronic pain daily could make it so easy to give up but if you do not pick yourself up and try again you will never know if you can do it again. You may be defeated once or 10 times but to show the strength to carry on that will show everyone that you will never be completely defeated by chronic pain.

I had to do this myself today when my pain dramatically increased while sitting in the seats. Big events like that is something I often struggle with now due to the small amount of room around the seats and the uncomfortableness of the seats but what also did not help today was the sun shining that was beaming down on my knee making it warm up and become sensitive.

I am used to the staring, slow walking and general irritance of my condition however I still worry about it affecting my family. I know my family love me no matter what but I am sure they still have the thoughts of “Oh for goodness sake, not again” when they have to deal with me like that. My mum having to help me to the bathroom. My brother having to let me grip onto his shoulders so that I can get up the stairs. My dad having to act as my crutch on the way to the car.

People often say to me “how can you keep going through the pain” but I think that is obvious isn’t it? If my family can deal with me like that, surely the least the deserve is for me to try. I have previously said before that the one piece of advice I would give to a new CRPS sufferer is that even if you feel you cannot try for yourself, try for your family because they will find it as hard as you are, if not harder! This advice is still valid to this day and is what I will live by for the rest of my life.

7th August 2017

So after the pain of Saturday and working on my feet all day yesterday, it was no surprise that I was still suffering with some pain throughout today. It was mainly within the top of my back and in my ankle, which makes walking and just general

movement of my upper body difficult. Luckily I work in an office on a Monday, so my work was not affected but I wanted to go for a run.

I went back and forth as to whether I should go or not because of the pain as the last thing I wanted was to make the pain last another day bur I got home with the thought of all I can do is try, whether I do 30 seconds or 30 minutes that was going to be my best because I was still trying! Well I went out and carried on running until I felt I couldn’t run any further.

I ran 1.1 miles, which when thinking about my half marathon in 2 months, isn’t much but it showed me I could run through the pain as due to being distracted, the pain after the run was not as bad as before my run! Although a small run, for me tonight was a big achievement which makes me more determined and excited for October!

10th August 2017

So Thursday’s are my day for my weekly personal training session. I was slightly nervous it may not go too well as ironically my personally trainer had a knee surgery on his left knee last week, which meant he was bandaged up and limping. Your probably thinking “Well why would that bother you?” but a complication of my disorder is that it has an over protection trait towards the left hand side of my body. This means if my brain perceives a left knee to be indanger, it will give me pain in my left knee because it wants me to stop what I am doing because I am “in danger”. The left knee that is in danger does not have to be my own, which means if I see someone with injuries to their left leg, my brain will take that as a danger and so I receive pain myself!

So when i saw the huge bandage on my personal trainers left leg, I spent the first 10 minutes avoiding any eye contact with anywhere to do with his leg. However I was slightly surprised when I did not feel anything at all when I walked in and originally saw his leg. This is a first for me, so I carried on!

The session was hard, but in a good way! It was mainly about building up the core muscles and my cardio fitness. He worked me hard but I kept up with everything I told him to do, which impressed us both! I am so glad I have started going back to the gym because it makes me feel so good when I can see the results each week!

CRPS Diagnosis

CRPS Diagnosis

Complex Regional Pain Syndrome (CRPS) is a collection of signs and symptoms that define this particular condition. A syndrome according to the Oxford Dictionaries, is a ‘group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms’. Therefore, we can clump together any set of symptoms and give it a name, which is really what has happened over the years in medicine. The important point is that when we use the term, we should all know what we are talking about and know what we should look for to make a diagnosis. In other words, a set of guidelines.

The Budapest Criteria delivers guidelines for CRPS, which you can read about in this paper by Harden et al. (2013). The clinical criteria (see below) acknowledge the sensory, vasomotor, sudomotor/oedema and motor/trophic categories that really highlight the complexity of CRPS. Pain is often the primary concern, with people describing their incredible suffering in a range of graphic ways. However, it is not just the pain that causes suffering but the way in which the life of the person changes together with their sense of who they are and their sense of agency seemingly lost. One of the roles of the clinician is certainly to help restore that sense of who I am, a construct that is built from many of life’s ‘components’.

Budapest Criteria

1. Continuing pain, which is disproportionate to any inciting event

2. Must report at least one symptom in three of the four following categories

  • Sensory: Reports of hyperalgesia and/or allodynia
  • Vasomotor: Reports of temperature asymmetry and/or skin color changes and/or skin color asymmetry
  • Sudomotor/Edema: Reports of edema and/or sweating changes and/or sweating asymmetry
  • Motor/Trophic: Reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)

3. Must display at least one sign at time of evaluation in two or more of the following categories

  • Sensory: Evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure and/or joint movement)
  • Vasomotor: Evidence of temperature asymmetry and/or skin color changes and/or asymmetry
  • Sudomotor/Edema: Evidence of edema and/or sweating changes and/or sweating asymmetry
  • Motor/Trophic: Evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)

4. There is no other diagnosis that better explains the signs and symptoms

Importance of diagnosis

A diagnosis made in the same way, based on the same criteria means that clinicians, researchers and patients alike are all discussing the same condition. This may seem pedantic but in fact it is vital for creating a way forward. Clinicians mus know what they are treating, patients must know what they are being treated for and researchers must know what they are researching. Sounds obvious but let’s not take it for granted. So the Budapest Criteria has pointed all those with an interest in the same direction. Consequently we can focus on creating better and better treatments.

As with any painful condition, the start point must be understanding the pain itself. The following questions arise that we must be try to answer:

  • why am I in pain?
  • why this much pain?
  • why is it persisting?
  • what influences my pain?
  • what do I, the bearer of the pain, need to do to get better?
  • what will you do, the clinician or therapist, to help me get better?
  • how long will it take?

New thinking, new science, new models of pain over the past 10 years has advanced our knowledge enormously. Understanding how we change, how our body systems update, how we can make choices as individuals, and the practices we can use to change our pain experience to name but a few, create great hope as we tap into our amazing strengths and resources as human beings. Detailing the treatment approaches is for another series of blogs, but here the key point is that the first step in overcoming pain is to understand it. It is the misunderstanding of pain that causes erroneous thinking and action, which we can and must address across society — pain is a public health issue. Chronic pain is one of the largest global health burdens (Vos et al. 2012). It costs us the most alongside depression, and I believe that this need not be the case if and when we change how we think about pain, based on current and emerging knowledge.

“The first step to overcoming pain is to understand it”

upandrunThis is the reason for UP | understand pain, which we started in 2015 with the aim of changing the way people think and then approach their pain, realising their potential and knowing what they can do. We are about to launch the new website that is packed with practical information for the globe to access online. Alongside this we have plans to create a social enterprise that will purport the same messages, coming from the great thinkers and clinicians who are shaping a new era in changing pain.

In April I will be running the London Marathon to raise awareness of the work of both UP and CRPS UK. You can support the work that both are doing to change pain by donating here

Thank you!

CRPS UK Conference | November 2015

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I was very pleased to be asked to speak at the CRPS UK Conference this year (see flyer for information). A few years ago I went to the conference and gave a talk about some of the latest approaches to treating CRPS, and since then there has been further progression in both thought and action. I will be looking at these developments as well as sharing the stage with Georgie who will be telling her story.

Those familiar with the UP mission will know that we are delivering messages about pain based on fact and science, illustrated by people’s lived experiences that demonstrate how individuals can move forward and live meaningful lives by understanding their pain and knowing what they can do at any given moment.

One of the problems with treatment and ‘sessions’ with healthcare professionals is that the actual face to face is limited in comparison to the rest of the time. Hence the individual must develop their knowledge and skills so that at any moment they can make a clear decision about the best course of action in terms of how they think and what they do. Arising as a solution to this problem, I developed Pain Coach, which is not only about coaching the individual in pain but also guiding them to become their own coach. This is a blend of the latest neuroscience, thinking in pain and a strengths based coaching model — we all have strengths and values that we have used in our lives, and we can use these for success with our painful problems as well.

The CRPS UK conference will be off the back of the UP event at Heathrow in October, so we shall be full of beans! UP uses singing and music to deliver our messages, but I leave that to Georgie and her choirs — I will not be subjecting you to my tones!

Hope to see you there!