Tag Archives: CRPS


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.


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


Pain distraction

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


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


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


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


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

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Pain distraction

Ellen’s CRPS story

CRPSHere is Ellen’s CRPS story in her own words, kindly sharing her experience for you to read:

My 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.

UP | understand pain

CRPS UK 2015

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

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

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

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

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

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

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

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

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

Normal = no threat; no threat = no pain

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

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

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

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

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


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!


Intense pain after wrist fracture — predicting CRPS

A recent study concluded that “… excessive baseline pain in the week after wrist fracture greatly elevates the risk of developing CRPS. Clinicians can consider a rating of greater than 5/10 to the question “What is your average pain over the last 2 days?” to be a “red flag” for CRPS”.

Most of what we need to know as clinicians comes from what the patient says. I have written previously about the importance of the narrative and taking heed. It appears from this study that paying attention to the early levels of pain after a wrist fracture can indicate a risk for developing complex regional pain syndrome.

Pain is poorly understood, especially more complex and persisting pain. Raising the level of pain understanding is fundamental to its treatment and for sufferers to overcome their problems. In knowing that intense pain (more than 5/10) could be a sign that CRPS is developing, the right action can be taken early and thereby prevent the condition evolving uncontrollably.

Of course the intensity of pain is but one dimension and clinicians should observe other characteristics of protection to design a comprehensive rehabilitation programme — e.g. inflammatory signs, posturing, behaviours and language to name but a few; this in the name of tackling the problem of pain more efficiently and successfully.

CRPS clinic in London — call us now to start your comprehensive treatment and training programme 07518 445493




CRPS Research Update | October 2014 #CRPS

Welcome to the Complex Regional Pain Syndrome Research Update for October, a summary of the latest studies. 

If you are suffering with CRPS, I am here to show you how you can move forward — come and visit the CRPS clinic page here.

Spinal cord stimulation for complex regional pain syndrome type 1 with dystonia: a case report and discussion of the literature.
Voet C1, le Polain de Waroux B2, Forget P2, Deumens R3, Masquelier E4.

Complex Regional Pain Syndrome type 1 (CRPS-1) is a debilitating chronic pain disorder, the physiopathology of which can lead to dystonia associated with changes in the autonomic, central and peripheral nervous system. An interdisciplinary approach (pharmacological, interventional and psychological therapies in conjunction with a rehabilitation pathway) is central to progress towards pain reduction and restoration of function.
This case report aims to stimulate reflection and development of mechanism-based therapeutic strategies concerning CRPS associated with dystonia.
A 31 year old female CRPS-1 patient presented with dystonia of the right foot following ligamentoplasty for chronic ankle instability. She did not have a satisfactory response to the usual therapies. Multiple anesthetic blocks (popliteal, epidural and intrathecal) were not associated with significant anesthesia and analgesia. Mobilization of the foot by a physiotherapist was not possible. A multidisciplinary approach with psychological support, physiotherapy and spinal cord stimulation (SCS) brought pain relief, rehabilitation and improvement in the quality of life.
The present case report demonstrates the occurrence of multilevel (peripheral and central) pathological modifications in the nervous system of a CRPS-1 patient with dystonia. This conclusion is based on the patient’s pain being resistant to anesthetic blocks at different levels and the favourable, at least initially, response to SCS. The importance of the bio-psycho-social model is also suggested, permitting behavioural change

RS: With CRPS we absolutely need to consider ‘multilevel’ modifications and adaptations within the nervous system but also how all the other systems that have a role in protecting us are functioning. This often manifests as habitual thinking and activities that maintain protection. Realising these habits, automatic by the nature of being a habit, and making changes with specific training creates new patterns of activity that head towards health.


Longstanding Complex Regional Pain Syndrome is associated with activating autoantibodies against α-1a adrenoceptors.
Dubuis E1, Thompson V2, Leite MI3, Blaes F4, Maihöfner C5, Greensmith D6, Vincent A7, Shenker N8, Kuttikat A9, Leuwer M10, Goebel A11.

Complex Regional Pain Syndrome (CRPS) is a limb-confined post-traumatic pain syndrome with sympathetic features. The cause is unknown, but the results of a randomized crossover trial on low-dose IVIG treatment point to a possible autoimmune mechanism. We tested purified serum immunoglobulin G (IgG) from patients with longstanding CRPS for evidence of antibodies interacting with autonomic receptors on adult primary cardiomyocytes, comparing with control IgG from healthy and disease controls, and related the results to the clinical response to treatment with low-dose intravenous immunoglobulins (IvIG). We simultaneously recorded both single cell contractions and intracellular calcium handling in an electrical field. Ten of 18 CRPS preparations and only 1/57 control preparations (p<0.0001) increased the sensitivity of the myocytes to the electric field and this effect was abrogated by pre-incubation with alpha1a receptor blockers. By contrast, effects on baseline calcium were blocked by pre-incubation with atropine. Interestingly, serum-IgG preparations from all four CRPS patients who had responded to low-dose IVIG with meaningful pain relief were effective in these assays, although 4/8 of the non-responders were also active. To see if there were antibodies to the alpha1a receptor, CRPS-IgG was applied to alpha 1a receptor transfected rat1-fibroblast cells. The CRPS serum IgG induced calcium flux, and FACS showed that there was serum IgG binding to the cells. The results suggest that patients with longstanding CRPS have serum antibodies to alpha 1a receptors, and that measurement of these antibodies may be useful in the diagnosis and management of the patients.


A CRPS-IgG-transfer-trauma model reproducing inflammatory and positive sensory signs associated with complex regional pain syndrome.
Tékus V1, Hajna Z1, Borbély É1, Markovics A1, Bagoly T1, Szolcsányi J2, Thompson V3, Kemény Á1, Helyes Z2, Goebel A4.

The aetiology of complex regional pain syndrome (CRPS), a highly painful, usually post-traumatic condition affecting the limbs, is unknown, but recent results have suggested an autoimmune contribution. To confirm a role for pathogenic autoantibodies, we established a passive-transfer trauma model. Prior to undergoing incision of hind limb plantar skin and muscle, mice were injected either with serum IgG obtained from chronic CRPS patients or matched healthy volunteers, or with saline. Unilateral hind limb plantar skin and muscle incision was performed to induce typical, mild tissue injury. Mechanical hyperalgesia, paw swelling, heat and cold sensitivity, weight-bearing ability, locomotor activity, motor coordination, paw temperature, and body weight were investigated for 8days. After sacrifice, proinflammatory sensory neuropeptides and cytokines were measured in paw tissues. CRPS patient IgG treatment significantly increased hind limb mechanical hyperalgesia and oedema in the incised paw compared with IgG from healthy subjects or saline. Plantar incision induced a remarkable elevation of substance P immunoreactivity on day 8, which was significantly increased by CRPS-IgG. In this IgG-transfer-trauma model for CRPS, serum IgG from chronic CRPS patients induced clinical and laboratory features resembling the human disease. These results support the hypothesis that autoantibodies may contribute to the pathophysiology of CRPS, and that autoantibody-removing therapies may be effective treatments for long-standing CRPS.

RS – as ever we must consider the role of the immune system but in the light of other systems as no system works in isolation to the others. There is vast interaction between the immune system, nervous system, endocrine system and autonomic nervous system to the point where I believe we are a single system interpreting and responding. One response maybe pain as part of protection and our systems become very good at protecting us — this is not to suggest that our systems and ‘me’ are separate entities. Whole person is the only way we can sensibly think about this.

Local Anesthetic Sympathectomy Restores fMRI Cortical Maps in CRPS I after Upper Extremity Stellate Blockade: A Prospective Case Study.
Stude P, Enax-Krumova EK1, Lenz M, Lissek S, Nicolas V, Peters S, Westermann A, Tegenthoff M, Maier C.

Patients with complex regional pain syndrome type I (CRPS I) show a cortical reorganization with contralateral shrinkage of cortical maps in S1. The relevance of pain and disuse for the development and the maintenance of this shrinkage is unclear.
Aim of the study was to assess whether short-term pain relief induces changes in the cortical representation of the affected hand in patients with CRPS type I.
Case series analysis of prospectively collected data.
We enrolled a case series of 5 consecutive patients with CRPS type I (disease duration 3 – 36 months) of the non-dominant upper-limb and previously diagnosed sympathetically maintained pain (SMP) by reduction of the pain intensity of more than > 30% after prior diagnostic sympathetic block. We performed fMRI for analysis of the cortical representation of the affected hand immediately before as well as one hour after isolated sympathetic block of the stellate ganglion on the affected side.
Wilcoxon-Test, paired t-test, P < 0.05.
Pain decrease after isolated sympathetic block (pain intensity on the numerical rating scale (0 – 10) before block: 6.8 ± 1.9, afterwards: 3.8 ± 1.3) was accompanied by an increase in the blood oxygenation level dependent (BOLD) response of cortical representational maps only of the affected hand which had been reduced before the block, despite the fact that clinical and neurophysiological assessment revealed no changes in the sensorimotor function.
The interpretation of the present results is partly limited due to the small number of included patients and the missing control group with placebo injection.
The association between recovery of the cortical representation and pain relief supports the hypothesis that pain could be a relevant factor for changes of somatosensory cortical maps in CRPS, and that these are rapidly reversible

RS – we are either in pain or not in pain. If our focus is elsewhere and we are not experiencing pain, then we are not in pain. Whilst this may sound obvious, many people tell me that they are in pain all of the time. When I ask about times that they feel no pain, an oft given answer is that the pain is hidden at times when they do not feel it. Pain cannot hide. It is on-off, binary. At any given moment, we are either in pain or not in pain. Every moment changes and hence pain can change in a moment — referring to the rapidly reversible change in maps in this article; and why wouldn’t we have the ability to rapidly adapt? I believe we can change and it happens in a moment — our thinking, actions and experiences. Consider how we can be happy in a moment, and sad in a moment. Happiness is a feeling, pain is a feeling. Both have a purpose, to motivate us to do something or think in a particular way. There is a desperate need to change the globe’s thinking on pain, this being my main purpose. In doing so, we can alleviate a vast amount of suffering from pain, narrowing it down the pain that we need for survival and eliminating the pain that persists for no good reason.


CRPS – the narrative holds the clues |#CRPS

The story told by the patient with CRPS provides insight into their suffering, characterised and brought to life by their chosen language, body posturing, body language, and changing facial expressions. The priming for a condition frequently arises months or years before from an illness, a stressful event, a previous injury or painful event. The way in which the body systems respond to the prior challenge creates a learning experience so that when the body is faced with another similar threat, the responses swiftly kick in. In CRPS this can be with absolute gusto as the level of protection reaches the stratosphere in many cases.

One of the common problems in CRPS is an altered sense of the body, particularly where the condition manifests but this can extend to that whole side of the body. Careful testing of movement precision and sensation identifies these changes as does questioning about clumsiness and the feel of the body. The feel of the body has a substrate in at least the sensory cortex — neurons + immune cells and their neurotransmitters and cytokines.

On questioning, people will volunteer that the limb feels detached, as if it does not belong to them, the sense of size changes and that it does not do what they demand. This is vital information as this identifies a key feature of CRPS (and other pain problems) that must be addressed with understanding and specific training. It is highly unlikely that pain will improve until body sense and precision improves.

So, as a patient you should always explain this feeling, strange (and scary) as it may appear, and as a clinician you should always ask.

London CRPS clinic with Richmond Stace — call now to book your first appointment 07932 689081


Where do we tackle pain?

When someone tells you that they have a painful knee, it makes sense to have a look at the joint to see what has gone wrong. Perhaps an x-ray or a scan would help to determine the state of the cartilage, bone and surrounding soft tissue. An assessment of the range of motion, motor control and the responses to sensory testing reveal any functional limitations and adaptations. Is this enough to truly understand where pain really sits? Is it enough to decide where to intervene? In some cases yes is the answer, but not always!

Important that this kind of evaluation maybe, we must consider the significant pile of literature that points out pain is not an accurate indicator of tissue damage, as so eloquently concluded by Lorimer Moseley. One has only to think about phantom limb pain to realise that there is no need to have an arm, or a leg, or indeed any body part, for there to be pain in that location.

Phantom limb pain is the condition that illustrates the concept that pain is allocated a space. This space could be the knee as in our example above, any other body region or regions, or even outside of the body. A study by Lorimer Moseley also suggested that pain is felt in a space and not within the tissues. Subjects were asked to cross their arms, placing the affected hand into the space usually occupied by the unaffected hand. The effect? Pain relief. This is of course one study, however there was an impact that needs to be further investigated. Assuming that pain is allocated a space, this would explain why, when you position the hand in that of the non-painful side, both the pain and movement quality improve.

This is easily tested in the clinic with both hands and feet. The demonstration is a potent one for the individual as their limb experience can change. Seemingly there is an ease of the tension and guarding as well as the sensitivity. It can be profound, especially when someone has been suffering with a nasty pain such as in complex regional pain syndrome (CRPS) or neuropathic pain. The caveat is that this is not a cure, and it does not work every time, however in those that the effect is apparent, the ability to move more normally promotes healthy tissue and perception by the brain, especially if you are looking at the movement — extra sensory feedback via the visual system.

In summary, as best we know, pain is allocated a space. This can be a space that is occupied by a body region that why we feel pain in the tissues, the place where the pain emerges. The actual location of the pain is determined by the brain as it decides where we need to attend for protection. Recall that pain is a protective device involving a widespread network of neurons within the brain. There is no higher pain centre, but rather a network that monitors the sensory situation and responds as needed. On the basis that the sensory feedback suggests something dangerous is happening, the network will create an output that we experience in the body via a space that is deemed to need protection. Unfortunately, this output can occur without sensory input in some cases of persisting pain as the neuroimmune system becomes very sensitised and responsive to a range of stimuli including those that are not actually dangerous, hence why normal activities can hurt.

On this basis, when considering where to treat pain, we have to consider the space where the brain feels we need protecting. With the emergent property that is pain, the sensation is at the end of a process and it is therefore wise to target the entire biology from top to bottom and bottom to top. This means we need to address the higher centres, for example developing the individual’s understanding of their pain, reducing fears and using strategies for the brain maps of the body concurrent with using techniques within the space, i.e. the body area where the pain is felt.

For more about our comprehensive treatment and training programmes for persisting pain and injury, call us on 07932 689081 to make an appointment. Clinics in London & Surrey.