CRPS

Last week before the London Marathon

Richmond Stace | The Pain CoachLeave a comment

The London Marathon is next Sunday, 23rd April. This means a week of relaxing, putting my feet up, being fed grapes and generally letting everybody run around after me. Well, that’s the dream….

It’s an interesting time during the tapering. I feel that I should be doing more. My body behaves like a dog waiting at the door with lead in mouth, yet I know (from some excellent advice) that the opposite is what is needed right now. A few easy, short runs will be just fine, I keep telling myself.

It has been hard work but a thoroughly enjoyable test of one’s ability to keep going and maintain a training routine of 40+ miles a week. That’s a lot of time. Some may say ‘me time’. I am grateful for those close around me for allowing me to spend a good chunk of time out there and then putting up with my stretching, moving, twitching and generally fidgeting to ease the aches and pains. I have also probably become a bit ‘boring’ as I talk about the times I have run….

It is hard to avoid thinking about a time. Initially I was just aiming to finish but now I am eyeing four and a half hours. But who knows! I have never done this before so it is a leap into the unknown!

I doff my hat to all my fellow runners and wish them all well on their individual quests. By all accounts the London Marathon day is a great one and I am thankful for the chance to experience the crowds, the buzz and the bobbing heads of the sea of runners.

If you can come and support CRPS UK and UP, you’ll be a welcome voice from the crowd! You can also support our work by coming to our quiz on Thursday (20th April) (click here) or donate here

Happy Easter!

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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!

Richmond to run London Marathon 2017 for UP and CRPS UK

Richmond Stace | The Pain CoachLeave a comment

I am very excited to announce that I will be running the London Marathon this year jointly supporting UP and CRPS UK.

Please support us here by donating whatever you can spare to help reduce suffering

CRPS UK is a registered charity that is focused upon supporting people with complex regional pain syndrome (what is CRPS?). CRPS is often a terribly impacting condition characterised by intense pain and accompanying symptoms that reach into every aspect of the person’s life. Having received little attention, CRPS is gradually becoming more recognised, thanks in great part to the on-going work of the team at CRPS UK.

Georgie, my co-founder at UP, came to see me several years ago with CRPS and therefore at UP we were thrilled to team up with CRPS UK. CRPS has been a condition that I have studied for many years, and having worked with many people living the condition, personally I am honoured to represent CRPS UK and UP in this way, hoping to make a contribution by raising money to allow the work to go on.

Chronic pain is the number one global health burden. Think about all the conditions that hurt and cause pain. This is not just musculoskeletal pain, but all pain — cancer, gastrointestinal disorders, headaches, migraines, pelvic pain, heart disease, post-surgical pain, infections, inflammatory disorders! If pain was understood globally, by society, by individuals, we would know what we can focus upon to overcome the problems and live as best we can in a meaningful way. At the moment this is not the case. There is still a focus on the tissues and pathology as an explanation, but this is not the case. We have known for years that pain and injury are poorly related, and that there is much more to pain to know and work with to create the conditions for change.

This is what we aim to do at UP and CRPS UK. Pain is a public health problem affecting millions in many different ways: home life, relationships, social activities, work to name a few. People need to know the ways in which they can navigate these issues and move onward. The money you give will directly support projects and initiatives to reach this end where we hope to influence the policy makers and healthcare providers, but in essence to help the individual ease his or her suffering.

Thank you.

Richmond

 

Ellen’s CRPS story

Richmond Stace | The Pain CoachLeave a comment

IMG_3278My name is Ellen Williams and I have had CRPS for 5 years. My CRPS story began 6 months after I had an arthroscopy on my left knee after a sporting injury. Being told I was suffering from an incurable disorder, which is also invisible to everyone apart from me, was a rather daunting prospect at the age of 15. For the first 2 years I was told that I had a good chance of it disappearing, as I was young and fit enough to “fight” it like it was some sort of infection. 18 months of intensive physiotherapy, on a weekly basis helped to a certain extent but not enough to click my brain back. When the physical physiotherapy stopped working, I began asking questions. My doctor was the one to give me the news I did not want, telling me that now it was unlikely to go for a long time, if ever. As a 17 year old, hoping to go to university, beginning to think of what the future it felt like nothing mattered anymore because I was never going to be able to live the “normal” future I had been planning since I was 10. Needless to say this was the first time I had got very depressed during my battle with CRPS. However this is when I began to see Richmond. He gave me and my family the answers we needed but had never been given before, that yes I may have to live with this disorder for the rest of my life but that does not mean that life cannot be as good as it was always going to be. Learning to manage my disorder has had its difficulties along the way however every bad moment was worth it when I look back at how much I have managed to achieve since the first time I saw Richmond. My family has been there the whole time, through the tears, pain and happier times however I have always wondered about how hard it is for them. I struggle to see my mum unwell so I cannot imagine how she feels having to see me in agony and knowing there is nothing she can do to stop it. The one piece of information I would give to anyone with CRPS is that it is not just the person who suffers, so if you cannot try for yourself, maybe try for the ones who love you. Needless to say I am now 6 months away from finishing my degree and am doing what I love on a daily basis. I am happy. I never thought I would be able to say that 3 years ago and that does not mean I do not have bad days, some worse than others however my daily life is happy and is “normal” for me.

CRPS UK Conference November 2015

Richmond Stace | The Pain CoachLeave a comment
CRPS UK Conference 2015
CRPS UK Conference 2015

Here’s a quick reminder about the CRPS UK Conference that is coming up on 14th November in Bath, when there will be some fascinating talks from leaders in the field — see the flyer for details and booking.

I will be discussing practical elements of blending pain science and philosophical thought within a coaching model, a concept that I term ‘Pain Coach’, accompanied by Georgie from UP and Jo Moffitt who will both be sharing their experiences of CRPS. Our session aims to show you how we can go about changing pain and resuming a meaningful life with the right thinking and action, based on understanding pain.

The CRPS UK conference will be on the back of our next UP event, which is on Saturday at T5 London Heathrow, where an even bigger choir will be singing out all day to raise awareness of the problem of pain. We will be filming the event and putting out the footage so that you can enjoy the music — music being such an uplifter.

CRPS UK Conference | November 2015

Richmond Stace | The Pain CoachLeave a comment

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

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

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

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

Hope to see you there!