Category Archives: Complex regional pain syndrome

07Oct/17
Royal Parks 1/2 Marathon

Why I run

Royal Parks 1/2 Marathon

Team shirts for Royal Parks 1/2 Marathon

Why I run

Recently I was chatting to a good friend who asked me why I run. I had to pause and think because naturally I don’t class myself as a runner. Instead, I am someone who goes running.

Whether I am a runner or not is not particularly important, however the purpose is. I used to go out regularly just to keep fit. 30-40 minutes would suffice, I would feel pretty good afterwards, but it was often a bind beforehand. Then the Royal Parks 1/2 Marathon 2016 was on the agenda so I had to get a bit more serious. Somehow it became more enjoyable. There was a goal and a reason. The reason was to raise awareness of the problem of chronic pain and to raise money for UP, understand pain.

Purpose and mine as an example

Having a purpose or a meaning is known to be a key ingredient for a healthy and happy life. You may or may not know what it is, so it’s a great idea to write it out. We all have a calling, or as Seth Godin says, a ‘caring’. We can have a number of these in relation to family, work and other activities in life.

My purpose, which you could also call my ‘why’ in Simon Sinek’s language, is to inspire as many people as I can, to live well and overcome pain. This is by directly working and coaching with people who suffer chronic pain to date, and delivering The Pain Coach Workshops to clinicians and therapists who choose to become inspirers, educators, enablers and encouragers.

Here is Richard Leider on purpose ~ TEDX talk

UP & CRPS UK London Marathon

Next came the opportunity to run the London Marathon 2017. I was selected to represent CRPS UK, joining together with UP, and realised the excitement of taking part in an incredible day. The experience of preparing for a marathon was something I can now look back upon with pride. Somehow you manage to fit in the regular and long runs. Undoubtedly this required the support of the people close by. The 20 mile plus efforts would consume a Saturday with the recovery on return usually consisting of walking like John Wayne accompanied by much grunting and groaning until the next day.

What has running done for me?

There have been a number of effects of long distance running beyond the obvious fitness. At a time when I was driving understand pain onwards, the regular and intense exercising helped me to focus. In part this was from organising my time, prioritising and concentrating on completing tasks. There was no choice, because I had to fit in the long runs, but now this has become a habit. We have finite time and so wise use is important to me.

The ability to focus comes into its own when you are some miles into the run and your thinking turns to stopping, the pain, and plenty of other reasons why continuing is a bad idea. To keep going and ‘just run’ as my good (running) friend advised me was gold. You can and do just keep going, suddenly inspired by something you choose to turn your attention to, fortifying the attitude I describe below, which we can take into other arenas of life.

The most significant opportunity was building upon the ‘you can’ approach to life. Building up the miles with an attitude of ‘I can do this’, keeping my attention on a picture of success that I clarified from the start and following principles that take me in that direction resulted in completing the marathon. Looking back now, this was a mindset that pervaded the UP ethos and how grown immeasurably since. The more you work that approach, the more the approach works.

you can

Undoubtedly, focusing on one’s strengths means that you get results together with the development of clarity and resilience to face challenges that crop up. This is no different with a pain challenge to overcome, which is why I encourage people to adopt the strengths approach. It works if you have a purpose, principles to follow and a picture of success to work towards based on living a healthy and happy life.

So this is why I run. Not to keep fit — that is a great side effect and not at all separate from the way we feel and think; we are whole unique individuals — but to nurture and build an approach to life that is about possibility and fulfilling potential.

approach to life: problems or possibilities?

Tomorrow I run the Royal Parks 1/2 Marathon in London. This was a great day last year and I am very excited to be doing it again. I am running to raise awareness of CRPS UK and understand pain and the work we are doing to address the No 1 global health burden ~ see below. Please support my work. Chronic pain affects each and everyone of us either because we suffer, know someone who suffers or pay towards the problem via taxes, insurance premiums and long NHS waits. This can change. This is our work at understand pain, this is my purpose.

04Sep/17
CRPS Conference Cork 2017

Notes from Day 1 CRPS Conference in Cork

Notes from Day 1 CRPS Conference in Cork

CRPS Conference Cork 2017

Welcome to my observations from Day 1 of the CRPS Conference in Cork last week. The notes from Day 2 will be with you shortly, but for now you can check out what went on in the room and beyond. I was there in a dual capacity: representing Understand Pain and keen to make connections with others who want to drive social change with regards pain, and as a trustee for CRPS UK.

‘no pain no gain’ — really??

There are always key moments in a day’s full programme, and there was one that stood out yesterday. More on that shortly.

We started with a walk through of the known predictors for CRPS by Dr. Andreas Goebel. Over the years, Dr. Goebel has become a well known figure in the world of CRPS, so it was good to see him kick off proceedings after an introduction from Dr Dominic Hegarty.

Risk Factors pre-trauma include age over 50 years, being female, suffering migraine, osteoporosis, asthma and taking ACE-inhibitors. Immediately post-trauma we should assess for the pain intensity (more pain, more risk), a lack of exercise, the fracture type, musculoskeletal co-morbidities and perhaps pre-existing PTSD (post traumatic stress disorder).

This is a key area for clinicians and our ability to recognise the likelihood that a person could develop CRPS. In honing the awareness and skills, this can only get better, which would translate into less suffering. Jumping ahead to the last part of the day, CRPS UK launched their new information leaflet that specifically targets the lack of knowledge and understanding.

CRPS UK Leaflet

CRPS UK New Leaflet

The morning rolled on as we were treated to performances from the CRPS pop-stars. A gig typically gets going with the headline act at the end of a day of progressively bigger bands taking the stage. We started with a ‘main event’ as Lorimer Moseley entered the room via a video link.

Lorimer’s urine

Having shown off about his white, urine coloured wine as he described it, Lorimer gave us a typically witty yet informative talk. Always entertaining, LM is equally sharp in his observations from data, thereby keeping a firm foot in science. Admirably, he emphasised one of the often neglected aspects of being human in these situations — bias. Our declarations when speaking set the scene and let the audience know who we are (a bit).

The focus of Lorimer’s excellent work is certainly the brain. He has a way of transmitting the information in such a digestible way that most presenters would pay for a few of his (brain) cells. Together with the ability to make the listener feel on a par, this makes for easy listening whilst looking at some dots on a graph. I would not make head nor tail of those dots, but LM makes it engaging and everyone comes away knowing what they mean as well as an insight into the rigours of doing science well.

If there was a criticism it would be about the focus on the brain rather than the person. However, it is up the the clinicians and therapists to gather the presented information from the different speakers and form a bigger picture. Regular readers will know that my beliefs (and there will be bias in these of course) sit with the whole person approach, which is why Tim’s (Beames) talk softened the blow of data by bringing the human element to the room.

Tim and I have emerged from a similar place and whilst we will have our unique take, our interests lie in the person and that person learning to reduce their suffering. We both know that people can do this with the right ‘know-how’.

“The whole person approach is a must”

GMI (graded motor imagery) has been a big mover in CRPS. Tim was keen to point out that this is not a method to use in isolation, which I am sure everyone would agree with. In the physio world, over the years, there has often been the search for the recipe, the one treatment mode that will help. Littered with ‘gurus’, physio education has suffered as a result. I think and hope we are moving beyond this now. Integrated education when we share platforms with different disciples must be a way forward. Certainly in the Pain Coach Programme I want a range of clinicians and therapists so that we can create super teams with a shared vision, a focus on our strengths and each person knowing why they do what they do as a minimum.

Shock of the day goes to Robert Van Dongen as he described an approach whereby the person with CRPS receives hands on manual therapy that looks agonising. I say ‘looks’ because he treated us to a video of a foot and ankle being massaged and moved with audio. The noises coming from the recipient suggest it was not pleasant. The folk on my table who have CRPS winced and looked away, I felt something in my foot. It was provocative viewing! But, this is what is happening so we should discuss the treatment philosophy and work out whether it does have any long-term benefits. I am not sure. I will not be adopting this mode readers may like to know.

“Watching someone have a painful experience triggers real emotions and sensations in me”

The patients receiving the therapy were clearly motivated to undertake the programme. The short term pain of the treatment out-weighed the ‘pain’ of trying something else. There was a reward somewhere — maybe the relief of the heightened pain easing off! A key point here with a motivated patient is that they are likely to do well with any functional programme because they have prioritised and committed to taking actions in line with getting better. Would these people do equally well with a standard programme?

The shock wore off and we settled into a solid and well thought out talk on the team approach from Candy McCabe. I am into ‘teams’ and in particular ‘super teams’ so I was very pleased to hear Candy speak about some of the important principles. Great teams do great work but this necessitates a good leader, a vision, a recognition of individual and team strengths, engagement, and compassionate communication at the very least.

Bring a touch of the real world to the end of the day, we heard from two clinicians who described their experiences. Together with Victoria from Burning Nights, these stories brought the day to a conclusion as we moved from data, science and theory to what actually happens and the phenomenon of the lived experience. At the end of the day, it is this lived experience that is important. A person suffering CRPS, do they need to know about chemicals, brains, nerves etc, or do they need to know that they can be ok and that they can get better? For me that’s a no-brainer.

Whilst I agree that people must understand their pain (of course I do!), this is a practical knowing. The Understand Pain & Pain Coach Workshops deliver the knowledge, skills and know how, with the last element a vital part of the make-up. Without know-how, we don’t know. Not knowing results in fear, worry, and a hit and miss approach versus a knowing that leads to confidence, control and an outlook of being well.

Through the day there was acknowledgement that this is a difficult condition to treat and address for the person and clinicians. Traditionally thinking, yes this is true. But as with anything, if we start by saying how hard it will be, we are pre-empting. We are creating a lens of ‘difficultness’ through which we push everything else.

There is a choice to be had. What would happen if we used the lens of possibility and opportunity? We are designed to change and have inherent mechanisms of getting better. The offerings of a whole person approach tap into our potential as amazing human beings as opposed to focusing on a body area, a brain, a particular treatment approach. The reality is that we are all unique (see blog here on WUPs) and hence there is no single way of dealing with a condition. And that is because we are not dealing with a condition, we are helping a human being overcome a challenge and how that manifests in them. The plea here then, is to stop trying to fit a round peg into a square hole. See things for what they are and address each person in the ‘personalised’ way that they need and deserve. I will write more on the ‘how’ of this subsequently.

So, with that all in mind, we move onwards into day 2……

04Apr/17
UP & CRPS UK London Marathon

Not long now

Not long now ~ with only a few weeks away before the London Marathon, I must admit that I am getting rather excited. It has been very worthwhile putting in all the miles with the aim of really enjoying the day.



One more long run to do this weekend and then I will be tailing off as advised by my team of trainers and co-runners. Yesterday a friend asked me about these 20+ milers and how you keep going. I never imagined that I would ever be running for 3-4 hours, and certainly never thought I would be popping out for a ‘quick 10 miles’. I have found that the time passes quickly once I get going but really focusing on what is going on around me, looking up, coaching myself to remain relaxed and feel inspired by the encouragement I receive.

Anyhow, the really important bit is raising money and awareness of two key projects tackling the number one global health burden: pain. The charity CRPS UK and the social enterprise UP | understand pain both envision a world of people understanding their own potential to live well and to overcome their pain.

THE PROBLEM OF PAIN

The costs of chronic pain to individuals and society are vast. Loss of earnings, loss of productivity, the expense of treatments that often don’t work and above all the immense suffering. This need not be the case if society really understood pain. By understanding pain, individuals would know where to put their efforts to get better from the outset of a pain problem, whatever the cause, and healthcare would deliver effective care.

The thinking on pain still largely resides in out-dated models. This means that individuals become reliant upon passive treatments, are subjected to endless unnecessary investigations and are exposed to the wrong messages about pain that keep expectations low and purport fears and worries that only increase suffering.

“Pain is poorly related to injury, tissue health, structures in the body, biomechanics or pathology

Our journey to understand pain began when two remarkable men created pain medicine. Pat Wall and Ron Melzack changed the landscape forever and have inspired a generation of scientists and clinicians to ask questions about pain and discover the answers: what is pain? What is pain for? What can we do about pain?

Our knowledge about pain has increased enormously but there is a long way to go before our current understanding is practiced day to day in society. This gap is a significant societal issue, and one that UP will bridge with the forthcoming education programmes and an online resource that is this very website. The UP site will be re-launched this year, packed with information that people can use to understand pain.

WE HAVE AMAZING POTENTIAL

Humans are incredible. We are designed to change, adapt and learn, so tapping into our natural resources is one of the most potent and enabling things we can do. Consider all the achievements of mankind, which largely boil down to a clear picture of success, an ability to focus upon a plan of action, taking action and learning along the way when facing challenges. Together with a dose of determination, courage and belief, we can achieve by always being the best that we can be: ‘I will be the best me today’ is not a bad mantra to have!

The challenge of pain is no different. The programmes that UP will run for people in pain and for clinicians are all based on how we can be successful, how we can chose the positive route, how we can achieve our best. This is by focusing on what we do well, how we do it and how we can do more of this whilst acknowledging and seeking to improve in other areas.

So this in my mind drives my desire to do my best in training and on the day on 23rd April. Having said that, I will be pleased to see some familiar faces in the crowd on the way round! Or even faces I don’t know who want to support our causes. Pain affects so many people across the globe for so many reasons. Together we can change this by changing the way society thinks about pain and our expectations. Let’s expect to do well and live well.

Please support us here by donating whatever you can and join us for a quiz night before the run on Thursday 20th April in Surbiton — see here.

Thanks!!

27Mar/17

Charity quiz night

Charity Quiz Night

On Thursday 20th April we are having a charity quiz night at Wags N Tails in Surbiton to raise money for CRPS UK and UP | understand painclick here for the event link — please come along and support us! 

Richmond is running the London Marathon this year to support CRPS UK and UP — please donate here

Chronic pain is the number one global health burden

Chronic pain costs us the most of all the health problems that exist. One only has to think of all the conditions that are painful and consider the expenditure on investigations and treatment. This is in addition to the loss of productivity. Some 20% of the population suffers chronic pain, including 1:5 children, which begins to provide insight into the immeasurable suffering. People from all corners of society are struggling to understand why they are in pain, do not know what they can do and feel isolated as their plight continues. This does not need to be the case.

UP | understand pain

At UP, we have a vision of a world where people understand pain and know what they can do to live well. This begins with changing the way society thinks about pain, truly understanding the facts, in which case they would know that there is a way forward. We are constantly changing and learning meaning that we have the resources and the potential to get better. People need to know how.

UP is to be re-launched this year as a social enterprise that will deliver the latest knowledge about pain and how it can be applied. The know-how is vital as are the skills of well-being and self-coaching. The programmes will be delivered to people suffering pain and to healthcare professionals who work with people in pain. This includes trainees who are the new generation of clinicians and therapists. We also plan to take our message to the policy makers to create changes ‘top down’.

CRPS UK

The CRPS UK charity supports people who have been diagnosed with complex regional pain syndrome (CRPS — sometimes called RSD) and their families. The most recent diagnostic guide is the Budapest Criteria.

CRPS is poorly recognised and understood. This means that diagnosis and the right treatment can be delayed, resulting in on-going suffering. The pain of CRPS can be unimaginable with the impact upon the person’s life being enormous.

We can and must do better with CRPS and all pain conditions. The right messages early on and the right actions taken by both the individual and clinicians will make a huge difference.

The work being done by both CRPS UK and UP will be instrumental in the forthcoming changes that must happen in society. Pain is a public health issue of the utmost importance — the costs and the suffering. Pain must be addressed in this way, which is what we are doing at UP. This massive problem affects us all and we can do so much to transform the issue.

Please support our work by coming to the charity quiz on Thursday 20th April or donate here.

 

18Feb/17

Why am I running the London Marathon?

Why am I running the London Marathon?

We are 10 weeks away from the London Marathon and I am getting excited about the day. The training is going well, and I am using others experience and knowledge as a yardstick, reaching 16 miles so far. A bit more nudging in March and I’ll be set to join the thousands of other runners, coursing round the great city of London.

So why am I doing this? The answer is simple. To raise awareness and money to address the biggest global health burden, chronic pain. It costs us the most economically but of course the amount of suffering worldwide is immeasurable. This must change and we can change it by shifting our thinking to be in line with what we know about pain. With an understanding of pain, individuals realise their potential to overcome their pain and live meaningful lives. This is achievable, and in this day and age we have the means to reach across the globe to give people the knowledge and skills. This is the story of UP | understand pain, which was co-founded by myself and Georgie as a pain awareness campaign. Now we have big plans to take the project to another level to achieve our aim of changing the way society thinks about pain.

Complex Regional Pain Syndrome (CRPS) can be a terribly disabling condition, characterised by intense pain. Many people have not heard of CRPS and within healthcare diagnosis is often delayed. This is a problem because like most conditions, early identification allows for treatment to begin. The treatment must be based upon the person’s understanding of the signs and symptoms, for there is an understandable fear that drives on-going protection. Therefore, as with any injury or pain problem, the early messages must be right and make sense.A person’s belief drives their behaviours and subsequent thinking, so a good working knowledge of pain is vital ~ understand pain to change pain.

CRPS UK gained a place in this year’s London Marathon, and having spoken twice at their conferences and being in regular contact, I ‘volunteered’ to be the runner. I was very excited to be chosen and gratefully accepted, which is now why I am out in the Lycra every other day (I will not be posting a picture of that!). CRPS UK is a charity dedicated to advancing the understanding of the condition and supporting people with CRPS. The people involved are doing incredible work to raise the profile and have achieved so much through their dedication. Please visit their website here.

You may be someone suffering chronic pain or know someone who is regularly in pain. Most of us do know someone and can see the effects upon their life. This is not just pain from backs and joints but pain related to cancer, heart disease, arthritis, irritable bowel syndrome, headaches, migraines, rheumatological diseases, pelvic pain and many other conditions that hurt. The work being done by CRPS UK and UP aims to change this and provide resources and training that gives individuals and society a way forward, to overcome pain and live well.

Please show your support here and donate generously

Thankyou!!

25Jan/17

CRPS ~ a condition of great suffering

CRPS ~ a condition of great suffering

HandsUndoubtedly CRPS is a condition of great suffering. The pain and array of symptoms that characterise complex regional pain syndrome present one of the greatest challenges to the person as they try to live their life. Having worked with many people diagnosed with CRPS (see Budapest Criteria here), I have seen great and courageous effort put into getting better and overcoming the problem. Overcoming a problem means that the condition is not defining the person, that they are much more than the condition and are widening their focus to engage in meaningful activities. There maybe pain at times, but they know what they can do to increasingly minimise the impact or transform the pain skilfully with different techniques. We are always changing and our body systems updating, which creates potential and opportunity. It is this we can work with to seek to overcome pain.

Suffering is simply defined as ‘the state of undergoing pain, distress, or hardship’ (Oxford Dictionary). A deeper definition by Cassell (1982) describes suffering as ‘a state of severe distress associated with events that threaten the intactness of the person and stated that suffering occurs when an impending destruction of the person is perceived; it continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner.’ One of the key elements of Cassell’s definition is the reference to the integrity of the person. In any condition, we must consider and refer to the person and not just a part of the person. No part of an individual can exist without the whole, and indeed it must be the person who suffers and not their arm, hand, leg or back. These are the locations in the body where we experience sensations, yet there are workings behind the scenes that are vitally part of this experience that we cannot see or indeed perceive on a day to day basis, for example the activity of the brain.

Pain after joint replacementAs clinicians we are focused on easing the suffering of the people who come to see us. Pain is one cause of suffering that is the sensation and qualities that we can interpret as ‘bad’ or a sign that something is wrong. The actual ‘what it is like’ to be in pain is not separate from the way in which we think about it. An individual well practiced in contemplative techniques may be able to differentiate and sit with the feeling of pain, concentrating on what it is like without becoming embroiled with the thoughts and emotions, and indeed this eases suffering immeasurably. This skill requires regular practice of mindfulness meditation, and in so doing, the person can be more observant of the pain, without the judgement that makes it ‘bad’ rather than it just being the pain itself. The second arrow idea helps to clarify this phenomena.

The first arrow, piercing the body, is the feeling of pain. The second arrow, landing in the same place, is when we cause further suffering by the way we choose to think about the pain with the subsequent feelings and emotions. The second arrow is arguably when most of the suffering occurs and is addressed with simple measures such as really understanding pain to reduce the fear and anxiety, both of which fuel pain, developing a working knowledge of pain that gives the person the skills to think in the right way and to choose the best action in that moment, gaining insight into the causes of one’s own suffering and choosing a different path for a different experience and steering a course towards the vision of a meaningful life. This last skill is primarily about being able to focus and maintain attention on a vision, this being the model of success, and address any distractions that usually emerge in the form of unhelpful thoughts.

The first arrow also needs attention as we must create the conditions for healing. There are a number of well known biological changes in CRPS and other chronic pain conditions, and these are addressed in different ways. Medication and interventions are sometimes chosen, but always needed are ways to navigate each moment, day to day, specific training to improve body sense, movement and tissue health, together with practices that promote the general health and well being of the person. The skills of well being are a fundamental part of the Pain Coach Programme simply because they create the right conditions for being well. As we become healthier and as the person feels better in themselves, which can happen in many different ways, the pain and suffering ease. This comes back to the absolute need to address the person, the whole person.

There is much greater understanding of CRPS and chronic pain now. We can cut through some of the complexity with explanations and ways forward. Understanding that pain can and does change like any experience, knowing what one can do in any given moment builds confidence and belief, and developing the skills of well being mean that it becomes easier to focus on the necessary training and strategies to create the conditions for health and gradually resume meaningful activities. A focus on ‘what I can do’, even if it is a small amount to begin with, and then building up the time/amount, alongside the training and day to day techniques takes the person forward in their chosen direction.

CRPS is a condition of great suffering but there are ways to ease suffering that can be learned and practiced, all on a basis of understanding pain and the condition. This builds confidence and belief and a sense that ‘I can’, which is developed together with training to move better, become fitter and feel well. We are designed to change, and we can make choices when we know that they exist. Clinicians are in a position to unpack the complexity of pain, and in so doing show people that they do have choices and how to harness their potential for getting better and living meaningful lives.

I am running the London Marathon this year (2017) for CRPS UK and UP | understand pain. Please support their work to change the problem of pain by donating here

The Pain Coach Programme to overcome chronic pain | t. 07518 445493

24Jan/17

Supporting CRPS UK Charity

Supporting CRPS UK Charity

In April I am running the London Marathon supporting CRPS UK Charity and UP. The aim is to raise awareness of the work being done to change the problem of pain and to raise money to support this work. I will be writing blogs about CRPS, pain, CRPS UK and UP, as well as posting links to important research over the next few months in the build up to the run.

You can support me by clicking here

What is CRPS? Complex Regional Pain Syndrome ~ For a simple guide, click here

From CRPS UK:

CRPS UK is a registered charity focused on helping people with Complex Regional Pain Syndrome (CRPS) to live the best lives they can. The charity was set up by four people who have CRPS to provide a support system to others with the condition. We aim to do this by providing a supportive environment in which people can find out about CRPS and get in touch with a community of people who know what they are going through via our very active closed Facebook group. This serves to allow people to speak with confidence and privacy about any concerns they may have, thus supplying a huge support network. We have already held successful conferences and regional meet ups. For many this is the first time they have met anyone else with the condition. These social opportunities help to break down the isolation often experienced with a chronic health condition.

Specialist treatment can be the key to lessening the impact of CRPS and helping people with CRPS to live rich and fulfilling lives. We are working with specialist treatment centres to provide a grant scheme for patients with CRPS who are experiencing financial difficulty, to help them to afford travel expenses to and from hospital. This will ensure that they can access the treatment they need. Currently this is only for travel costs for those receiving treatment at the RNHRD/RUH in Bath, but we aim to roll this out in the future to other units specialising in CRPS.

Going forward we also aim to improve diagnosis and treatment of CRPS. We will be promoting awareness and education about CRPS in healthcare professions, which should lead to more patients receiving timely diagnosis and intervention. This will be through the production of healthcare leaflets and presentations via direct contact.

Complex Regional Pain Syndrome (CRPS) is a rare neurological disorder, which causes chronic pain that cannot be controlled and can affect all areas of the body but most commonly occurs in the limbs. It is a debilitating and disabling inflammatory condition that can be caused by minor injury (sprain), broken/fractured bones, surgery or can appear spontaneously without known cause.

CRPS is believed to be the result of dysfunction in the central or peripheral nervous systems where the signals between the affected limb or body part and the brain are misinterpreted resulting in the following:

  • “burning” pain.
  • hypersensitivity of the skin.
  • changes in skin temperature: warmer or cooler compared to the opposite extremity.
  • changes in skin colour: often blotchy, purple, pale, or red.
  • changes in skin texture: shiny and thin, and sometimes excessively sweaty.
  • changes in nail and hair growth patterns.
  • swelling and stiffness in affected joints.
  • motor disability, with decreased ability to move the affected body part

CRPS can strike anyone at any age and affects both men and women, but statistics show it is more common in women.

Very little is known or understood about CRPS and there is no cure.

For further information, you can contact CRPS UK here

15May/16

Simple guide to CRPS

CRPSMany people have not heard of complex regional pain syndrome (CRPS), and many who have heard of CRPS do not understand the nature of the condition, so here is a simple guide to CRPS.

— What is CRPS? Types of CRPS and common confusions:

  • C – complex: CRPS is a complex condition in that it involves many body systems and a range of signs and symptoms must be present for the diagnosis (Budapest Criteria — see here).
  • R – regional: CRPS emerges in a region of the body, most commonly affecting a hand or a foot.
  • P – pain: CRPS is typically very painful — things that would normally hurt really hurt, and things that don’t normally hurt now also hurt. The pain can often be excruciating and incredibly disabling.
  • S – syndrome: a syndrome is simply a collection of signs and symptoms

There are two types of CRPS, Type 1 and Type 2:

  • Type 1 – CRPS evolves from an injury such as a sprain or a fracture. Sometimes the injury is innocuous with the resulting symptoms of CRPS being an over-response, especially the pain that is out of proportion to the injury.
  • Type 2 – CRPS evolves from a nerve injury

Common confusions

The pain

The pain of CRPS is vastly out of proportion to the seen injury. Pain does not have a reliable or direct relationship with pain in any circumstance; pain is simply not an accurate indicator of tissue damage. Believing that more pain equates to more damage results in wrong thinking and wrong management. People describe the pain of CRPS in many ways.

Pain is often the main focus and reason why the person seeks help. Drugs are frequently viewed as the way to control and ease pain and indeed medication can and does have a role. However, there are many other ways to change pain, including a range of strategies and techniques that steer the person back to meaningful living.

Pain is an ultimate example of a conscious experience that grabs our attention and compels action. Pain is all about protection and is related to the level of perceived threat. In CRPS there is a high threat value associated with the region being protected, both in terms of our biology in the dark and the way we think about the pain and problem; i.e./ we raise the threat value by the way we think about our pain and the meaning we give to the pain, which is why understanding the problem and knowing you can change it is the vital start point.

Pain is complex and involves all the body systems that detect possible threat and then protect us: nervous system, immune system, endocrine system, sensorimotor system, autonomic nervous system (fright or flight). Consider the way in which CRPS presents and you will begin to see how these systems are all playing a role. There is no pain system or pain signals. Pain is about perceived threat: reduce the threat by thinking in the right way and taking healthy action, and the pain changes.

How it looks

Of course you cannot see pain but you can see when the region is inflamed — red, swollen, shiny etc. Inflammation plays a significant role in CRPS as in some people there is an over-inflammatory response to injury. Inflammation is normal but the volume is pumped up in some people, perhaps due to genetics but it can also be due to prior learning. The body systems that protect us have learned earlier in life to respond in a particular way and each time we need them to work, the do but with a bit more volume. Some call this kindling or priming. Examples of prior and existing conditions include: previous injury in the area and the sensitivity has persisted, irritable bowel syndrome, pelvic pain, migraine. A further consideration is the state of the person and the context of the injury. A traumatic injury, such as a car accident, can trigger over-responses as can a more straight forward injury occurring at a time of stress or anxiety. Understanding the person and knowing their complete story is key to gathering insight into what has happened and how it has happened.

How it feels

The affected region commonly feels different. It can feel alien, like it is not attached, not part of self, look different to how it feels. This can be strange and worrying but is characteristic of CRPS (and many other painful problems). It is due to a change in the sense of the body that is in part created by representational maps in the brain. We have many of these representations that allow us to perform tasks every day — imagining what we will have for dinner, thinking about how we will take the penalty or mow the lawn for example. However, when we have pain and move differently, i.e. we are protecting ourselves, the maps change thereby giving us a different ‘sense of self’. People don’t usually volunteer this information for fear of disbelief, however it is such an important part of identifying the problem and deciding upon the approach needed to overcome CRPS. Envisioning a normal sense of self is important before deciding on the right course of action: the aim is to feel oneself again after all.

Summary

CRPS arises within a circumstance, often an injury (but this can be minor), but the context in which the injury is embedded and prior experience determine how our biology in the dark responds. Pain is in the face of perceived threat hence the need to reduce threat to change the pain. We do this in a range of ways begining with understanding and thinking the right way before taking action (a coaching, treatment & training programme) to overcome the problem in as much as the person feels themselves and leads a meaningful life.

** If you think you have CRPS or have any concerns, you should always seek the advice of a healthcare professional who understands your condition.

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08Feb/16

CRPS Research

CRPSKeep up to date with some of the recent CRPS research papers. You can click on the title link for the full text version. My comments are posted ‘RS’ in italics.

Pain exposure physical therapy (PEPT) compared to conventional treatment in complex regional pain syndrome type 1: a randomised controlled trial

abstract

To compare the effectiveness of pain exposure physical therapy (PEPT) with conventional treatment in patients with complex regional pain syndrome type 1 (CRPS-1) in a randomised controlled trial with a blinded assessor.

The study was conducted at a level 1 trauma centre in the Netherlands.

56 adult patients with CRPS-1 participated. Three patients were lost to follow-up

Patients received either PEPT in a maximum of five treatment sessions, or conventional treatment following the Dutch multidisciplinary guideline.

Outcomes were assessed at baseline and at 3, 6 and 9 months after randomisation. The primary outcome measure was the Impairment level Sum Score—Restricted Version (ISS-RV), consisting of visual analogue scale for pain (VAS-pain), McGill Pain Questionnaire, active range of motion (AROM) and skin temperature. Secondary outcome measures included Pain Disability Index (PDI); muscle strength; Short Form 36 (SF-36); disability of arm, shoulder and hand; Lower Limb Tasks Questionnaire (LLTQ); 10 m walk test; timed up-and-go test (TUG) and EuroQol-5D.

The intention-to-treat analysis showed a clinically relevant decrease in ISS-RV (6.7 points for PEPT and 6.2 points for conventional treatment), but the between-group difference was not significant (0.96, 95% CI −1.56 to 3.48). Participants allocated to PEPT experienced a greater improvement in AROM (between-group difference 0.51, 95% CI 0.07 to 0.94; p=0.02). The per protocol analysis showed larger and significant between-group effects on ISS-RV, VAS-pain, AROM, PDI, SF-36, LLTQ and TUG.

We cannot conclude that PEPT is superior to conventional treatment for patients with CRPS-1. Further high-quality research on the effects of PEPT is warranted given the potential effects as indicated by the per protocol analysis.

***

High-frequency repetitive sensory stimulation as intervention to improve sensory loss in patients with CRPS type 1

abstract

Achieving perceptual gains in healthy individuals or facilitating rehabilitation in patients is generally considered to require intense training to engage neuronal plasticity mechanisms. Recent work, however, suggested that beneficial outcome similar to training can be effectively acquired by a complementary approach in which the learning occurs in response to mere exposure to repetitive sensory stimulation (rSS). For example, high-frequency repetitive sensory stimulation (HF-rSS) enhances tactile performance and induces cortical reorganization in healthy subjects and patients after stroke. Patients with complex regional pain syndrome (CRPS) show impaired tactile performance associated with shrinkage of cortical maps. We here investigated the feasibility and efficacy of HF-rSS, and low-frequency rSS (LF-rSS) to enhance tactile performance and reduce pain intensity in 20 patients with CRPS type I. Intermittent high- or low-frequency electrical stimuli were applied for 45 min/day to all fingertips of the affected hand for 5 days. Main outcome measures were spatial two-point-discrimination thresholds and mechanical detection thresholds measured on the tip of the index finger bilaterally. Secondary endpoint was current pain intensity. All measures were assessed before and on day 5 after the last stimulation session. HF-rSS applied in 16 patients improved tactile discrimination on the affected hand significantly without changes contralaterally. Current pain intensity remained unchanged on average, but decreased in four patients by ≥30%. This limited pain relief might be due to the short stimulation period of 5 days only. In contrast, after LF-rSS, tactile discrimination was impaired in all four patients, while detection thresholds and pain were not affected. Our data suggest that HF-rSS could be used as a novel approach in CRPS treatment to improve sensory loss. Longer treatment periods might be required to induce consistent pain relief.

RS: This is an interesting finding. Stimulation that brings about changes in the cortical maps is not a new notion, and indeed is part of normal learning. We stimulate with movement and/or touch under day to day circumstances, and in fact that is what we need to employ moment to moment at home to overcome CRPS and other painful conditions. Most people will not have access to equipment but are able to use simple touch, two point discrimination and movement, all of which form a vital part of the training and self-coaching programme. Pain is a lived experience and the programme must become part of life and hence be as simple as possible, which it can.

***

Motor imagery and its effect on complex regional pain syndrome: an integrative review

abstract

The motor imagery (MI) has been proposed as a treatment in the complex regional pain syndrome type 1 (CRPS-1), since it seems to promote a brain reorganization effect on sensory-motor areas of pain perception. The aim of this paper is to investigate, through an integrative critical review, the influence of MI on the CRPS-1, correlating their evidence to clinical practice. Research in PEDro, Medline, Bireme and Google Scholar databases was conducted. Nine randomized controlled trials (level 2), 1 non-controlled clinical study (level 3), 1 case study (level 4), 1 systematic review (level 1), 2 review articles and 1 comment (level 5) were found. We can conclude that MI has shown effect in reducing pain and functionality that remains after 6 months of treatment. However, the difference between the MI strategies for CRPS-1 is unknown as well as the intensity of mental stress influences the painful response or effect of MI or other peripheral neuropathies.

RS: motor imagery does have an impact on our ability to move, and often rapidly so after a few repetitions. Using imagery and visualisation to assess mental representations, body sense and integrity alongside other simple tests gives an insight into the different hierarchical levels of contribution to the brain’s best guess about this moment for the individual. What we are experiencing now is our brain’s prediction (or best guess) when it has chosen from a number of hypotheses. Using imagery and visualisation, we can impact on the predictions as well as our own expecations that feed such predictions and our own conscious sense of what is to come. Pain is worse when we expect something to hurt, so what if we do not expect this and indeed anticipate something different, new and healthy?

***

Fear and reward circuit alterations in padeiatric CRPS

abstract

In chronic pain, a number of brain regions involved in emotion (e.g., amygdala, hippocampus, nucleus accumbens, insula, anterior cingulate, and prefrontal cortex) show significant functional and morphometric changes. One phenotypic manifestation of these changes is pain-related fear (PRF). PRF is associated with profoundly altered behavioral adaptations to chronic pain. For example, patients with a neuropathic pain condition known as complex regional pain syndrome (CRPS) often avoid use of and may even neglect the affected body area(s), thus maintaining and likely enhancing PRF. These changes form part of an overall maladaptation to chronic pain. To examine fear-related brain circuit alterations in humans, 20 pediatric patients with CRPS and 20 sex- and age-matched healthy controls underwent functional magnetic resonance imaging (fMRI) in response to a well-established fearful faces paradigm. Despite no significant differences on self-reported emotional valence and arousal between the two groups, CRPS patients displayed a diminished response to fearful faces in regions associated with emotional processing compared to healthy controls. Additionally, increased PRF levels were associated with decreased activity in a number of brain regions including the right amygdala, insula, putamen, and caudate. Blunted activation in patients suggests that (a) individuals with chronic pain may have deficits in cognitive-affective brain circuits that may represent an underlying vulnerability or consequence to the chronic pain state; and (b) fear of pain may contribute and/or maintain these brain alterations. Our results shed new light on altered affective circuits in patients with chronic pain and identify PRF as a potentially important treatment target.

Pain Coach ProgrammeRS: we know that fear provokes on-going and more protection as we are perceiving a threat. Pain is also about perceived threat that is being predicted by our brain’s best guess about a particular situation or context base on what has happened before. This is one of the reasons why pain can be so specifically associated with a particular movement, a place or a thought. Many are puzzled by the changeable nature of pain and how it can exists one minute and not the next. Understanding pain allows people to realise that this is exactly the lived experience, especially in youngsters who can appear to be moving normally and then be in agony. Their brains have predicted a need for protection and hence they are in pain. The perceived threat passes and the new prediction is ‘no threat’ and hence no pain. This is how it works and unfortunately many people are not believed as a consequence and a really important reason why society needs to understand pain. Fear of pain being eradicated results in positive change and is a key step towards overcoming pain, starting with a working knowledge. I use UBER-M as a self-coaching tool that I give to individuals: U (understand pain; working knowledge), B (breathing & mindfulness), E (exercises – specific and general), R (re-charge energy to engage); M (movement for health and expression); the question to ask is this: ‘Are these thoughts and actions taking me towards my vision of a healthy me?’

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19Nov/15

CRPS UK 2015

CRPS UK Conference 20154 years ago I came down to Bath to speak at the CRPS UK conference and so I was delighted to be asked to return and talk today. To take listeners beyond the theory, I asked Georgie and Jo to join me as a triple act, to illustrate and to enliven what I was saying by describing their lived experiences. Chatting to people afterwards, it appears that this gave an insight into the potential that everyone has for changing in a positive and constructive way; a way that is meaningful for them.

UP | understand painFor those who could not be there and for those who are there who would like a summary of my key points, this blog is for you.

The talk was entitled ‘Understand pain to change pain’, the message being that by understanding your pain, you think and act in such a way that you can go about overcoming your pain.

Establishing how we think about our pain is a key start point — how do you think about your pain? Why do you think it hurts? Why do you have persisting symptoms? These are some of the questions that need answering in order to move forward. Pain is a protective response to a perceived threat, and it is the person who does the ‘perceiving’ as well as embodying the experience of pain. We are the producer and the experiencer of our pain that is felt in the body, in a location that is deemed needy of protection in that moment. For reasons to be fully understood, our bodies can become very, very good at this response, and create many habits of thought and action that influence the likelihood of pain. Remember though, pain is a response to a perceived threat, so changing one’s perception begins to change the pain experience; reduce the threat, reduce the pain. Some may wonder why then, do they still feel pain despite having eradicated fear of the pain and other conscious threats? This is because there are many, many subconscious cues in the environment, in what we think and do, that can be perceived as being threatening. Whilst we cannot account for each and every variable, and how these change in combination with other variables, we can alter the perceived threat of the most obvious ones: movements, places, people, thoughts.

CRPSIt is the person who feels pain, not the body part. I may experience pain in my knee but it is not my knee that is in pain, I am. This may sound strange initially, but think about it for a minute. Who is thirsty? You or your mouth? Who is hungry? You or your stomach? Who is in pain? Your or your knee? Therefore, who needs treatment, training, coaching etc? You do, the person who feels pain and lives the pain. Any treatment programme must address the whole person and their lived life — this is them and their life in which the pain is embedded. It also has to make sense, engaging the person so that they continue to create the conditions for change.

To overcome pain we must firstly understand pain, much like a farmer would plough his field before sowing seeds–a vital start point. Having a working knowledge of your pain allows you to engage with your programme, focus on your vision of how you want your life to be and how you are going to get there whilst dealing with distractions. Distractions usually come in the form of negative thoughts, which deflate, demotivate and actually intensify pain responses by increasing the threat value. Understanding pain also helps to reduce and eradicate fear that also impacts on how you experience your pain. Fearful thoughts and avoidance both contribute to on-going pain and hence are necessarily addressed.

UP | understand painThere are many strategies, techniques and exercises that can be used, but for these to work, our thinking needs to be straight and based on a working knowledge. This is useable knowledge that can be considered at any given moment to ensure that the inner dialogue is based on truth and not on fearful opinion–think about what you tell yourself every day; what do you convince yourself? The Pain Coach Programme over-arches the specific strategies employed. The Pain Coach delivers the knowledge and skills to the person so that they become their own coach at any give moment, deciding on the best and healthiest course of action; towards the vision. A blend of the latest thinking in pain science with strengths-based coaching gives the person everything that they need to overcome their pain. What does overcoming pain mean? It means that you live your life in a meaningful way according to you, and that there are always opportunities to grow and develop.

UP | understand painI ran through some of the strategies that I use within the Pain Coach Programme including UBER-M, which is one that I give to people so that they may choose the wise and healthy option, taking them towards their goals; this as opposed to being distracted by negative (embodied) thoughts and unhealthy actions.

  • U–understand: a working knowledge of my problem; what do I know? what do I do now? This is about clarity, not fear
  • B–breathe: mindful practice and breathing to cultivate awareness of the bodily aspects of the pain experience and how thoughts manifest in the body, and then what you can do to change these habits
  • E–exercise: specific sensorimotor training and general activity
  • R–re-charge: we need enough energy to engage with life!
  • M–movement: to nourish the tissues and the body maps in the brain to have a sense of normal

Normal = no threat; no threat = no pain

Pain is all about perceived threat. Reduce the threat consciously by understanding and knowing what to do (that’s the easy bit!), and then go about reducing the perceived threat that occurs via habits and subconscious processing. This includes environmental cues, contextual cues and habits of thought; the so-called ‘autopilot’. Persisting pain is characterised by many habits, automatically learned responses and attentional biases. These must be addressed by constructing a programme that works with the person, not just their painful body part –> it is the person who is in pain, not their foot, arm, back etc. My back, to use an example, cannot feel pain. I feel pain. I experience pain, and I experience my pain in my back. There is an enormous difference in the underlying thinking and hence the approach. The whole person approach is vital for pain and any other condition having said that! If healthcare at large adopted this way of thinking, we would be far more successful with persisting conditions; this to the point where the suffering lessens and lessens. Reducing the impact results in a meaningful life, and this is achievable for all by developing understanding and then choosing wise actions.

My emphasis throughout the talk was on understanding pain to change pain. How can just understanding pain change pain, you may ask? Put simply, by understanding pain you are changing the way that you think about it, the meaning that you give to it and what you then do about it. If you do not understand your pain, like any problem, you cannot solve it, and the erroneous thoughts that one has can lead down a route of perpetuating fear, avoidance, beliefs that pain will not change. This route is one of on-going suffering. Understanding pain creates the way forward to overcoming pain; overcoming pain being the return to a meaningful life as defined by the person. When you know what you are dealing with and how to deal with it in any given moment, then you are creating the conditions for healthy change. This is the essence of Pain Coach, creating those conditions as often as possible, becoming aware of certain habits, learned behaviours and associations, compassionately correcting and moving onward with a selection of strategies. This is about getting back to life by living that life. Keeping that in the forefront of your thoughts, and letting go of distractions leads you towards your success. Let us be positive with good reason, because we are always changing, and with positive strategies.

For more information or to book an appointment, please call 07518 445493 or email [email protected]