UP

Why am I running the London Marathon?

Richmond Stace | The Pain CoachLeave a comment
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16.3 miles

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!!

CRPS Diagnosis

Richmond Stace | The Pain CoachLeave a comment
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!

We have done the run!

Richmond Stace | The Pain CoachLeave a comment

up-maraThe Royal Parks 1/2 marathon today (9th October 2016) ~ we have done the run!

Team UP completed the run around the Parks and London today to raise awareness for UP and money to launch our campaign. It was a great success!

The Team: Richmond Stace, Jonathan Vickers, Peter Brown, Chris Mutch & Ann Dunmall

On a beautiful morning, we completed the course in good time. Ann even sang in the Rock Choir performance on the main stage!! Awesome!

We were very well supported by Jo, Lucy, Lucy H, Georgie, Mark and of course the volunteers and staff. A big thanks to Sally!

This success means that we will do it again. And again. The #upandrun will now be one of the ways in which we continue to raise awareness through exposure and conversations with people and other charities. UP will support runners in the UK and beyond by funding their place and supplying a running shirt while the runner raises money for UP. So if you want to run for us, get in touch ~ upandsing@gmail.com

You can still support us here: upandrun

And now for the feet to go up!

UP supports research into pain

Richmond Stace | The Pain CoachLeave a comment

cropped-screen-shot-2015-10-21-at-08-20-53.pngOne of our main objectives is to raise money to support vital research that will make a significant difference to the way in which pain is understood and treated. Such research is underway here in the UK. This is both exciting and necessary in moving forward our thinking so that we can have a significant impact on the global problem of pain.

Mick Thacker has been an enormous influence upon my work and beyond, and in fact I blame him entirely for my obsession with understanding pain! I still recall the lecture he gave when I had my ‘aha’ moment, realising that there was a way forward. Not looking back since, there have been incredible steps forward to where we are now. Mick has had a huge impact upon so many people over the years and this continues. We have a lot to be thankful for and I am grateful for the opportunity to support the work he describes below. I believe that this research is by far our best opportunity to truly understand pain.

‘We propose an interdisciplinary programme of research that focuses on a new approach to pain based on the Predictive Processing Framework (PP) set out by Profs Andy Clark, Jakob Hohwy, Anil Seth and Karl Friston. The main feature of this proposition is that pain arises from circular influences that link the body (including a brain) with the world. This approach sees pain as an action-orientated perception that attempts to both identify and alleviate/limit the potential causes of actual, potential or ‘imagined’ danger to the self. We believe that this approach will extend well beyond the current bio-psychosocial model.

Working closely with philosophers and neuroscientists we will reframe our current understanding of pain using models of PP and will marry empirical based experiments into nociception with current philosophical perspectives. We plan to use these newly acquired perspectives to propose and plan a series of empirical studies that examine pain from the perspective of PP. The direction of these studies are likely to employ many different approaches across the (cognitive) neurosciences including human psychophysics and neuroimaging as well as the development of modelling paradigms involving artificial neural networks and related techniques allowing us to fully understand and evaluate pain and it’s impact on the person.’

Mick Thacker PhD. MSc. Grad Dip Phys. Grad Dip MNMSD. HPC. FCSP.
Senior Consultant AHP (Pain) Guy’s & St Thomas’ NHS Foundation Trust &
Centre for Human and Aerospace Physiological Sciences. King’s College London.
Pain Section, Neuroimaging. Institute of Psychiatry. Kings College London.
Adjunct Senior Research Fellow, School of Health Sciences. University of South Australia.

Some strong words about pain

Richmond Stace | The Pain CoachLeave a comment

Here are some strong words about pain because this is what drives the UP | understand pain campaign. Chronic pain is the number one global health burden — it costs us the most and then consider the personal cost and suffering endured by each individual. We are not just talking about musculoskeletal pain (e.g., back pain, neck pain, osteoarthritis etc.) but all pain: headaches, migraines, pelvic pain, irritable bowel syndrome, cancer related pain, pain related to conditions such as diabetes, heart disease, lung disease and all the other situations in which we hurt and can continue to suffer.

Traditionally the search for the reasons for pain consisted of looking for a pathology, an injury or other structural explanation in the body. The biomedical model needs something to find, something to see with the naked eye or on a scan. Pain can never be seen.

Pain is the ultimate example of a conscious experience, and conscious experiences are built by the individual based on a number of factors that are biological, psychological and sociological. Typically it is the biology that is focused upon with some psychology, which means that the biopsychosocial model purported for some years now, is not really used except in name.

The reality is that you cannot separate these dimensions. How is psychology not biological or sociological? How is biology not psychological? It makes no sense to divide what is a lived experience, a first person experience that embraces the unification of thoughts, perceptions and actions. Fortunately for society, there is a model that is most likely to be able to reflect this unification and the research needed to test the model is going to be supported by the UP campaign (charity-to-be).

As society has evolved so has our pain. Chronic pain is a societal phenomenon — on certain parts of the world, back pain did not exist until the concept was introduced by modern healthcare. That is a societal issue, not a medical issue. And by this regard, society needs a shift to support a new understanding of pain to relieve that very society of this on-going pain problem. This is not a medical problem. As time moves away from the initiation of the pain experience, it shifts rapidly towards the need for a sociopsychological model — what does the person in pain need to understand? What do they need to do? How do they engage with their family? How do they engage with their work? How do they communicate their pain? What actions do they need to take day to day to get better?

This is a public health problem that needs addressing as such. It is not dramatic to say that world leaders and policy makers need to be having conversations about the health problem that costs the globe the most and taking action now. It is absurd that the main reason for seeking help, the vehicle taking people to healthcare is frequently pain. How much formal training do healthcare professionals receive?

The passion behind UP | understand pain emerges from the absolute need for an enforced change from the bottom up. Society needs to be instrumental in the change for its own good and so this is where UP is taking the campaign. To the people. The voice of the people to enforce the necessary change.

This weekend UP has a team at The Royal Parks 1/2 Marathon, raising funds that will be the foundation for all that is described above. So join us and spread the word as we raise the profile of this problem into the consciousness of society for action to be taken now.

Join us on Twitter @upandsing using #upandrun

What research is UP supporting?

Richmond Stace | The Pain CoachLeave a comment

Pain being hugely complex and one of the greatest examples of a conscious experience means that we have many questions to answer. This includes an understanding of pain biology, pain psychology and the social dimension. Whilst all are important, it is the unification of these that is the lived experience, the phenomena of pain. This is what we must ultimately understand so that we can have a true working knowledge of what is going on and what we can do about it.

Hence we need a model that can deliver this depth of understanding and a basis for action. We are fortunate in that such work is going on as we speak, and it is this work that UP will be supporting. The yield will be the practical application of our knowledge about pain so that individuals can really know what they can do to move forward and overcome their pain. Such knowledge will also inform healthcare practice from the outset when a person presents with a pain problem — those initial messages are vital; they must be right as they often set the scene.

Chronic pain is the number one global health burden, which means that millions are suffering. This can change. This must change. This is the reason for UP.

Please support us in our mission and come and see us at The Royal Parks run on Sunday 9th October: http://www.justgiving.com/crowdfunding/understandpain

We are on twitter @upandsing and our hashtag for the run is #upandrun

RS

Why are we running in The Royal Parks 1/2 marathon?

Richmond Stace | The Pain CoachLeave a comment

DSC_0179Not long to go now! The day’s events look great fun, so do please come and see us so we can tell you (once we have our breath back!) what UP is all about and why we are raising money.

In short, UP is all about changing how people and society thinks about pain by delivering the right messages based on the latest science of pain. The widest reach comes via the internet and so we are working on a great website resource for all those who need to understand pain — people suffering, those affected by chronic pain and those delivering the care. We are also raising money to support contemporary research into pain, in particular the use of a practical model that explains pain and provides a way forward for people on a day to day basis.

Chronic pain is the largest global health burden, and most people don’t even know that!

Please come and support us! There are 5 of us running ably supported by Jo and Georgie. Georgie will also be performing with Rock Choir on the main stage.

Follow us on Twitter @upandsing where the hashtag will be #upandrun

If you would like to donate to the campaign, please click here and know that you are contributing towards a new movement to reduce global suffering.

Hope to see you there! Look out for the logo: cropped-screen-shot-2015-10-21-at-08-20-53.png

UP for Hyde Park half marathon

Richmond Stace | The Pain CoachLeave a comment

On 9th October an UP team will be running the Hyde Park half marathon, raising awareness for the understand pain campaign. Following three successful singing events at Heathrow, we are moving forward by applying to become a charity. This will create a structure that enables us to fundraise so that we can support our work in delivering the right messages about pain, empowering individuals and educating health professionals globally.

The overarching aim of UP is to reduce the suffering endured by millions across the globe. A shift in thinking so that pain is understood will enable change in the right direction, whereby we live in a world where pain is not feared but instead addressed in the right way. This means we use the right language and communication with people, focus on their needs, listen to their story, respect their experience and create a way forward with the person. Not only does UP promote change in the right direction by understanding pain, but also how we can go about this in a compassionate fashion.

Here are our immediate plans:

  1. to create a brilliant website full of high quality content that will help individuals and society to understand pain and what can be done.
  2. to promote individual’s understanding of their pain and what influences their pain so that they can be empowered to overcome their problems and lead a meaningful life.
  3. to raise money to support a research project that will further our understanding of pain so that treatment can improve.

Much more to come!

The team are really looking forward to the half marathon, which will be a lot of fun. I think that there maybe a few surprises in the crowd to look out for and a few competitions on the day. Keep following us and share with friends, colleagues and family. We need your support so that we can spread the word and reach as far and as widely as we can!

#upandsing T5 Heathrow Sat 25th June

Richmond Stace | The Pain CoachLeave a comment

Tomorrow is the 3rd #upandsing event at London Heathrow T5, so if you are working or passing through, come and see the show! There will be hundreds of singers once again, entertaining the passengers and staff at Terminal 5 from 1030 in the morning until 4pm. It’s a marathon sing song! And what better way to be uplifted than with music and singing.

The last two events in 2015 were both great fun days as well as opportunities to deliver the UP | understand pain messages. Chronic pain is one of the largest health burdens. The personal suffering and cost to society is enormous, yet many people do not realise this fact. Recent figures suggest over 40% of the population suffer pain beyond 3 months, a timeline that is deemed to be chronic. Whilst there is much more to it than a timeline, this figure demonstrates the enormity of the issue that needs addressing urgently.

One of the main contributing factors to this vast problem is the misunderstanding of pain in society. The UP campaign seeks to address this aspect by providing the latest information and thinking about pain. One of the reasons for raising money is to develop this website into a great resource for people across the world to access freely and learn both about pain but also what they can do to change their pain. Further, we are in the process of designing the best structure to apply for charity status so that we can fundraise to support important research and studies into pain so that understanding and treatment continues to advance.

Pain touches so many people across society. Pain is indiscriminate. It does not receive the attention or funding in proportion to the scale of the issue. So many conditions involve painful experiences and so many people experience pain without any serious condition, together making for the seismic impact that it has across the globe.

Please share and spread the word! Follow us on twitter @upandsing and see us on Facebook (a new page has been created today!). You will see picture and videos uploaded from tomorrow’s event, so you can share these with friends and colleagues, knowing that pain can and does change when you understand it and know what you can do.