Tag Archives: complex regional pain syndrome

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.

 

30Jan/17

CRPS Diagnosis

CRPS Diagnosis

CRPSComplex 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!

 

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.

Pain Coach Programme for CRPS and persisting pain | t. 07518 445493

 

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?’

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

UP | understand painUP | Understand Pain — join us on Twitter @upandsing

 

12Aug/15

I’ve been diagnosed with CRPS

Budapest | Moyan Brenn http://bit.ly/1EnHXWp

Budapest | Moyan Brenn http://bit.ly/1EnHXWp

I’ve been diagnosed with CRPS. This is a common way that the conversation begins with people who contact me, often scared witless by what they have found out online or by what they have been told. Others are confused and do not really understand what CRPS means, except they know it hurts like hell and has turned their life upside down.

Before reading any further, have a look at this link that outlines the latest criteria named after the place where it was recently established: The Budapest Criteria 

Complex Regional Pain Syndrome, also known as RSD (the old term — reflex sympathetic dystrophy), like any ‘syndrome’ is a collection of signs and symptoms that are gathered together and given a name. However, CRPS is complex (biologically), it is regional (usually affecting a limb), it is painful (one of the worst), and as I said, a syndrome. There you have it, CRPS.

Many people like to have a diagnosis, a label and a peg on which they can hang their hat. A diagnosis is useful if everyone then understands the implications and the treatment is standardised thereafter with effect. This is not the case with CRPS as few really seem to understand the condition.

Depending on where you go, you will be in receipt of treatment that varies according to the profession you see. Medically you are often offered drugs and interventions that can work to relieve some of the symptoms. As with any pain though, despite relief that everyone hopes for, drugs do not teach you how to restore normal living. For this you need to work with someone who understands the complexity of pain and CRPS and who can guide you to think in the right way so that you focus upon the right actions to move forward.

Here are some tips:

1. Read the classification and ensure that you are indeed suffering CRPS (there is type 1 and 2, which differentiate those with the condition from a non-nerve injury and a nerve injury that trigger the complex and painful responses)

2. Work with someone who genuinely understands CRPS, can educate, guide and motivate you through a comprehensive programme — that person must also know that pain can and does change!

3. Understand that medication has a role but you have a bigger role. There in only one person who can transform pain, and that is you. You just need to know how.

4. Do not nurture fear by reading about other’s difficulties online. We all suffer fear, anger and other negative emotions, but they are not helpful if they persist. You can learn the skill of deciding how to think, perceive and act using the strengths that you already possess in overcoming your pain.

5. You are NOT complex regional pain syndrome. Do not let this or any other conditions define you. You are ________ ________ (fill your name here) who is a son, brother, wife, husband, father, mother, employee, sport lover, art critic….again, fill in yourself and remember it.

6. Focus on what you can do; focus on your strengths and focus on overcoming the pain and CRPS.

The Pain Coach Programme focuses on your strengths that you will use to overcome your pain, including resilience, motivation, empathy, compassion, concentration and many others. Developing and growing your inner drive, you will learn skills and develop your knowledge so that you in effect become your own coach moment-to-moment, choosing to take each opportunity to transform and change pain on your return to a meaningful life.

t. 07518 445493

15Feb/15

CRPS | Georgie’s Story

Georgie suffers with complex regional pain syndrome (CRPS), which is a condition that can feature the most severe and extraordinary pain and symptoms. Soon after starting to work together, Georgie told me that she wanted to raise the awareness of CRPS and chronic pain. For some months we played with ideas, culminating in ‘UP’ — Understanding Pain.

UP has a mission. This is to raise awareness that chronic pain is the largest global health burden and that one of the biggest problems is the lack of understanding of pain. This leads to poor communication about chronic pain, low expectations with regards to overcoming pain, and poor treatment of chronic pain. Our aim is to change this thinking by raising the level of understanding so that people can see that there is a way forward. All too often the label of chronic pain is associated with isolation, hopelessness, disbelief and being discarded with regards to recovery. If only healthcare at large, policy makers, private health insurers and sufferers were aware of the facts about chronic pain based on rigorous research and pain science, than we can go about changing this situation.

This is our purpose:

  • Facts about pain so that everyone understands
  • Practical and effective ways of overcoming pain and living a meaningful life.

Here is Georgie’s story:

‘I suffer from CRPS – Complex Regional Pain Syndrome. CRPS is a chronic systemic disease causing severe pain which scores 42 out of 50 on the McGill pain scale. CRPS has many symptoms including skin colour changes and temperature changes from hot to cold, burning pain, stabbing like pains, numbness, pins and needles to name but a few. It can often start in one limb following an injury or surgery, some cases with no known injury and the disease can spread to other limbs and in some cases throughout the whole body. CRPS has a major impact on day to day life, it is debilitating and has a negative impact physiologically for the patient, their family and friends around them.

My story

When I was young, I was always very athletic. I came first in sprinting, loved horse riding and I was very good at gymnastics. I also had an artistic streak, studying piano, singing and gained honors in grade 8 organ. What I didn’t realise then was that I had hypermobility. This is not necessarily a bad thing as for gymnasts/dancers and musicians/ singers this means you are more flexible, which can be an advantage. But it can sometimes trigger other underlying possible conditions. I was not aware of my hypermobility until recently and it now explains so much about my life.

Once I left school, it took me a while to know what I wanted to do, I was an office junior, a travel agent, and then I went to Australia for what was supposed to be 12 months on a working travel visa. I travelled from Perth to Sydney by bus taking plenty of stops until I got to Melbourne. One day I woke up in my hostel room and I was unable to see properly. I got myself to hospital and they just told me I wasn’t eating properly which was common in travellers. I then took a 4 day bus to Sydney during this time my sight deteriorated. I then went to hospital in Melbourne and I was told I had Bilateral Papillitis a swelling of the optic nerve and they were not sure what damage it may do to my sight. I am not sure if this is related to my condition but I am not ruling that out. I spent so many hours listening to music and this saw me through my time there, I made a huge life decision and decided to become a singer…what did I have to lose? I wanted to live life to the full. I quickly returned home after being in the hospital for 2 weeks. The cause was never found after a few MRI scans, CAT Scans, Lumber Punches. However the symptoms reduced over 6 months on their own.

I found a college and became a professional singer. Of course, this is not the easiest path but I loved every minute of it. However from around 2002 I started to fall regularly as my ankle would give way, I would recover from one fall then months later have another fall from the weakness in the joint. In 2005 I had a fall that changed my life forever. I had fractured my metatarsal bone and badly sprained my ankle. I spent 4 weeks on crutches and started to realize something was really not right at all. My foot was freezing cold, it was black and purple in color and was highly sensitive to touch. I had drop foot and could not move my foot at all. The pain was unbearable burning, stabbing, shooting pains, pins and needles, numbness. I went back to the hospital who immediately knew something wasn’t right and after some 12 weeks in physio and after more scans I was informed that I had CRPS – Complex Regional Pain Syndrome. The first thing my physio said was don’t read anything on the internet it will just scare you, it will be a long journey and there is no guarantee of a good outcome. I had some treatment in the Surrey hospital undergoing a 
Guanethidine Block under sedation. Then my treatment was moved to St Mary’s in Paddington under the care of Dr Jenner.

I had many Guanethidine Blocks every 2 weeks nearly, but these were so traumatic for me that after a year I was unable to take any more treatment – my body was too week and after the last procedure the doctors found it too difficult to wake me up. I was on a cocktail of tablets to ease the pain. But I had no life left. I couldn’t work, I was on crutches or wheelchair bound for 3 years and my life felt completely hopeless. Depression started to set in, it felt like the darkest and most lonely place. Many of my friends were unable to understand and completely unable to help me, I lost a few friends along the way. CRPS is completely isolating, its an evil disease and its not called “The Suicide disease” for nothing as many people give up the fight. If pain is all you feel what else is there? But I had so much to live for and I am a fighter. I loved music and in those times of darkness it saw me though.

One day I started to write music again I don’t even know what inspired me, I just picked up my pen and started to write. I thought I had lost all of my passion, but there it was again still inside somewhere and I’m so glad I found it again. I wrote every day and I still do to this day. The music, singing and writing kept me occupied and in some brief moments made me forget the pain as my mind was busy creating. The music gave me hope back, if I could bring back passion, what else could I achieve? So I decided I was going to work at trying to walk to my kitchen and back to the sofa – now in actual fact this is only a few steps these days, but back then it took me a really long time, shuffling and holding on to everything I could find to hold me up, hopping, but I made it there. Now all I had to do was get back to the sofa with a cup of tea, this I hadn’t quite thought through and by the time I made it back to the sofa most of the tea was on the floor. I suffered a flare up after this attempt but I decided not to give up and little by little I found a way to make this small journey. Once I had achieved this, I started to make longer journeys to the bathroom and I even attempted the stairs. Going out without crutches was really scary, after 6 months I thought now is my time to try. Every week my friend Pete would pick me up for a jazz gig. He knocked on the door and I was stood there without my crutches, he asked me “Where’s your crutches” and I said “look…” I walked myself to his car (only a few feet away) with no aids. He started to cry. He said he couldn’t believe it and he was so proud of me. Pete is such a loyal and close friend he was there for me in some of my darkest times. From there I decided I had to try more and I wanted to find more to do in music. I saw an ad for Rock Choir leaders and I went for an audition, I tried to hide my limp and I got the job! (although, now that I know the Rock Choir team, I shouldn’t have been so worried about my limp). It was one of the happiest days of my life and I have never looked back.

When I started Rock Choir 5 years ago I ran 6 choirs. Before I started the job I was never sure how my body would cope – but it did and slowly I got used to my schedule and I loved every second of it, from training to rehearsals and shows. The adrenaline for me was the best part of it as it helped cover the pain I had and the music was so uplifting it always made me happy and lifted my spirits, I had never been happier. I was writing more than ever and started my own original band The Big Bads! Then just over a year ago my CRPS spread up my leg and into my arm and hand. This was devastating as it made it so much harder to play piano and do the one thing I love so much, conducting my choirs and getting to all my rehearsals and writing. I quickly realized that I would have to give up my morning choirs so that my body could recover and so that the CRPS would not spread to other limbs. I found it so hard to adapt and I felt so very low. It felt like all that I had fought so hard to have back could just be taken from me again.
I went back to my consultant who put me in touch with Richmond Stace, a specialist pain physiotherapist, to help me overcome the spread of the condition. He explained the condition so that I understood my role and what I could achieve, and taught me techniques including mindfulness, breathing, motor imagery and specific exercises. We talk about how I will get through some of my conducting, right down to visualizing and practicing the moves before I see my choir. I use nourishing techniques and try to remember to pace myself and move every so often into a different position. We talk though the schedule I have coming up and how best to manage it and every time I start to have a flare up we nip it in the bud before it develops. This year will be the first year in 10 years that I have not had a major flare up that has lasted longer than a couple of weeks!

I can see a future now; a future that means I can deal with the condition I have and co- exist with it. I would like to help others now to regain their lives from pain. I know how hard it is, but if I told you it was possible would you try too? I don’t want people to give up. There has to be a better way and if we can help more people find their path through the pain by understanding their symptoms, using music and techniques that work such as mindfulness, imagery, graded exercise, then that would make me even happier!