Tag Archives: CRPS UK

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.

22Jun/17
CRPS UK

Delighted to be a trustee for CRPS UK

delighted to be a trustee for CRPS UK

CRPS UK ~ a charity supporting people suffering Complex Regional Pain Syndrome (CRPS) and their carers

I am delighted to be a trustee for CRPS UK. In recent years I have spoken at the conferences and this year was invited to run the 2017 London Marathon for the charity.

CRPS is an example of a condition that can be excruciatingly painful. The Budapest Criteria lays out the necessary signs and symptoms, which is important in terms of a diagnosis and for research.

There are several issues that need urgent addressing and I will help CRPS with their endeavours.

As with other painful conditions, the first problem lies with the misunderstanding of pain. The predominant model remains biomedical, however this approach does not offer answers for persistent or chronic pain. The biomedical model relies on finding a pathology or structural basis to explain the pain. Pain is poorly related to tissue state because it is part of the way that the body protects itself. We have known this for many years, the famous lecture and paper being published in 1979.

“society does not understand pain despite it being the largest global health burden

Early diagnosis is important for CRPS as it guides treatment and prevents unnecessary suffering. This means that CRPS needs to be recognised by healthcare professionals. A common scenario is an incident resulting in the development of the condition, which is not recognised, thereby treated inefficiently, the symptoms worsen and so the cycle goes on. An important note is that poor treatment outcomes and low expectations affect the outcomes. However, the third point is that pain can and does change.

The predominant messages in society (and healthcare) are negative and suggest that the person has to merely cope or manage their pain. With the bar set so low and teeing up the person’s expectations at such a meagre height, no wonder there is minimal improvement. Why would you bother? This is all wrong and certainly not in line with what we really know about pain and people.

We have remarkable potential and need to know how to tap into it. What is getting in the way of recovery and getting better? What are the barriers to living? In exploring these by using our own amazing resources, we can achieve success and change. We are designed to change; you cannot not change! It is a matter of choosing a direction.

“what do you want in life? How does it look?

My Pain Coach Programme stemmed from understanding and believing in people’s ability to change, their resourcefulness (that they may not know they have because of negative messages to self and from others) and the latest pain sciences.

delighted to be a trustee for CRPS UK

Richmond Stace

Who am I?

For those who don’t know me and who are wondering why I have been asked to be a trustee for CRPS UK, here is a brief background. I am a physiotherapist with a background in pain neuroscience, rehabilitation and nursing. For many years I have worked with people suffering chronic and complex pain, giving them the understanding of pain that they can use to get better. In 2015 together with Georgie Standage, who came to see me with CRPS, we created UP | understand pain. Starting as an awareness campaign, UP was launched with a huge singing event.

delighted to be a trustee for CRPS UK

UP is now focusing on delivering the right messages about pain via the new website due to be available as a resource this year, and workshops for people who need to understand pain: sufferers, their families, clinicians, policymakers, patient representative group and other stakeholders.

I am very excited to be working with the team at CRPS UK, driving forward to change the way that the condition is recognised and treated. At the outset, people need to understand pain and know their role in getting better and their potential. Setting the scene from the beginning is vital and then using the right approaches so that the person can overcome their pain and live a meaningful life.

RS

 

 

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!!

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!!

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

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]