A day in the life of a clinical scientist

I know that many of you out there are ‘in the ‘hood’ with respect to writing and reviewing manuscripts. For the rest of you, here are some reviews we got on a paper concerning the development of CRPS.  I have had to remove some bits because they give away the journal and the study, which we will resubmit somewhere else. However, I think they are worth putting out there because they are very informative about the different viewpoints on CRPS that are held within the community. Also, both reviewers raise some interesting questions that I had not encountered before, or at least for a very long time. Our objective here is to provoke a conversation about CRPS, so we have finished it off with some questions, rather than answers.

On the first submission, we had 4 reviews. This is one more than usual – some journals use 2 reviewers. It is not unusual to get disparate views too – for this paper, Reviewer #1 was very positive, made a few helpful suggestions and asked for clarifications of some points. However, Reviewer 2 was not.

Here is an excerpt from Reviewer #2:

CRPS is an illness construction that cannot be reliably diagnosed or distinguished from other conditions (such as disuse after trauma) and for which there is no objective test or reference standard. Descriptive terms such as disproportionate pain and disability are therefore preferable.

I think that this conception does us a disservice. I think it’s more accurate to say that humans feel protective and prepare for the worst when they are in pain, particularly after an injury. The recovery process is counterintuitive and some people take longer to trust their arm and overcome the protective instincts than others. The duration and severity of pain, stiffness, swelling, and disability is determined by each individual’s shift in mindset from damaged vulnerable person to recovering capable person.

What your formulation suggests is that a subset of patients develop a physiological illness that is beyond their control, which we currently call CRPS. That the treatment will come from outside themselves and that they have little or no control over their health and wellbeing. There is no evidence for this and telling them this story will discourage them from developing the self-efficacy needed to recover. It will make them feel more passive and helpless when feeling passive and helpless is the very heart of the illness. This story reinforces catastrophic thinking and we need to stop telling it.

Here’s a better story to tell: …Catastrophic thinking is a normal aspect of human illness behavior and learning to separate thoughts from facts (in other words, you are injured and your wrist will be impaired, but you can depend on it and get your life back) greatly assists recovery. I would love your study and it would be better science and more in line with the weight of current best evidence if you approached it from this perspective.

Reviewer #3 also had a reservation, which related to the definition of CRPS and the potential importance of the presence or not of nerve lesion. Here is their review:

The problem lies in the definition of CRPS: I remain unsure, and unconvinced, since the reading of this manuscript, as to whether or not there were any (or even a majority) of patients that had CRPS Type 2: that is, whether or not there was a preponderance of patients that had “CRPS” because of an identifiable lesion of the peripheral nervous system such as SBRN compression, Guyon canal compression of the ulnar nerve or CTS. No physical examinations were done for these entities, and there has been retrospective work published that seems to indicate that operative nerve decompression does tend to provide measurable relief in these patients.

Interestingly, the journal obtained a fourth review because of the different viewpoints of Reviewer 1, 2 and 3. Reviewer #4 was also very positive and included this:

“I wouldn’t agree with Reviewers 3, point of view. The authors used accepted diagnostic criteria that are in the literature on this topic. I also find most of the criticisms of Reviewer 2 largely irrelevant. This review seems to be highly biased because the reviewer clearly has strong views on the topic.”

So, as you can see, one can get some pretty diverse opinions that require responses. Sometimes one’s responses to one reviewer gets another reviewer upset. That did not happen here, but our responses were not considered satisfactory by the two reviewers who were contacted – the other two reviewers presumably were not contacted because they were happy with the first submission. Reviewer 2 was very unhappy with our response that argued the case for a defined condition called CRPS:

Reviewer #2:

The authors are beholden to the concept of CRPS, which limits their ability to be objective and dispassionate, and to appreciate the work of our psychology colleagues in particular. Since the entire study is based around a diagnosis with no consensus reference standard, with wide and unwarranted variation, and the possibility that it is simply a social construction, it’s impossible to perform a scientific experiment.

Reviewer #3 was not satisfied with our view that although they might be different, the prediction of CRPS1 or 2 still followed the same rule. This is an interesting point – here is their review:

Based upon your response to my comment in the first review, you assert that even if there is a definable nerve lesion (or other definable lesion that is causing catastrophic pain), it is for all practical purposes, moot: the presence of catastrophic pain at presentation a priori condemns a patient to a poor result. I could NOT disagree more. It essentially absolves the surgeon of any diagnostic responsibility in terms of a patient with severe pain. What is the surgeon’s responsibility in this circumstance? Is the presence of catastrophic pain a ‘carte blanche’ for the treater to view the patient for evermore as a likely poor result? I find this line of reasoning not only unsupported by reason, but pejorative.

I paste these things here because I thought they might spark some sensible debate about CRPS, its diagnosis, or in fact its very existence. We have had some interesting discussions recently that raise doubts over much of our language of pain, including catastrophising, peripheral and central nervous system constructs. I think new issues are raised here that make us reflect on some pretty fundamental beliefs about CRPS. In this sense, the reviews are very helpful, albeit not for publication of this paper!

I am particularly interested in responses to Reviewer #2′s suggestion that CRPS is possibly a social construction and to recognise it as a condition fails to appreciate the work of our psychology colleagues. Anyone care to reflect on that?

Reviewer #3 asks some really novel questions that I had not considered before – does the suggestion that CRPS1 and CRPS2 might both relate to initial pain absolve the surgeon of diagnostic responsibility?

All sincere and constructive comments most welcome.

About Lorimer Moseley

Lorimer Moseley1 280x300 A day in the life of a clinical scientist Lorimer is NHMRC Senior Research Fellow with twenty years clinical experience working with people in pain. After spending some time as a Nuffield Medical Research Fellow at Oxford University he returned to Australia in 2009 to take up an NHMRC Senior Research Fellowship at Neuroscience Research Australia (NeuRA). In 2011, he was appointed Professor of Clinical Neurosciences & the Inaugural Chair in Physiotherapy at the University of South Australia, Adelaide. He runs the Body in Mind research groups. He is the only Clinical Scientist to have knocked over a water tank tower in Outback Australia.

Link to Lorimer’s published research hereDownloadable PDFs here.

Comments

  1. Very interesting. I think that it is a good point about not ‘trusting our instincts’. I remember that when I had a massage, I realised how ‘good’ it felt. And it ‘clicked’ that I could just trust myself. However, it’s vitally important that people know why they can trust themselves. Know things about how their ‘brain’ protects them below their consciousness. You have reflexes that stop you ‘damaging’ yourself.

    I know it’s separate, but that’s why a lot of your points are so good – how you explain what goes on in pain. In some ways our brains are separate to us, and it’s odd, but sometimes we need to be told to trust ourselves.

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  2. Matthew Lloyd says:

    Hi Lorimer,

    As a non-PT I am not familiar with the diagnostic criteria used for CRPS 1 or 2 and how the two are differentiated. I assume you had some level of diagnostic assessment in your subject selection, are you able to divulge that information?

    My biggest complaint with Reviewer 2′s arguments are that he seems to assume a false dichotomy – that the disease process must be either psychological or physiological, and to investigate one is to ignore the other. He also then assumes that teaching patients that their syndrome is (at least in part) physiological will result in feelings of hopelessness and impair recovery. However, when we attempt to address psychological factors in pain interventions our results are unsatisfactory, no? The exerpt you posted is at the very least not constructively worded.

    Reviewer 3′s question of the surgeon’s diagnostic responsibility seems to betray a correlation/causation mixup. Just because catastrophic thinking is correlated with poor long-term outcome does not mean that by using this as a diagnostic or therapeutic guide we therefore condemn the patient to a poor recovery. If we tell a person with cancer that they have a 25% chance of living for five years do we condemn them to die?

    It seems to me the regardless of the long-term prognosis the surgeon’s responsibility is the same – remove mechanical stressors that may be contributing to nociception. Just because their intervention may not be 100% of the “cure” does not absolve them of their duties.

    Let me know what you think of my comments!

    Matt

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  3. CRPS as a social construction, no. Pain as a social construction, yes. I think this reviewer is confusing the social construction of the experience of pain with the social construction of CRPS. As Matt said above – conceptualizing CRPS need not be either physiology or psychology.

    I’m surprised the comment that CRPS is a social construction would be viewed as a disservice to psychology. I believe this to be a flawed arguement – social constructivism, from a philosophical standpoint, has the perspective of subjectivism – that is, there is no truth. Many psychologists, especially in the area of pain suggest some beliefs are maladaptive and some are adaptive. By virtue of measuring and attempting to change catastrophic thinking, for example, implies that one believes there are ‘correct answers’ or truths. A social constructivist is also someone who likely does a lot of qualitative research – last time I checked, this form of research is not dominating the pain psychology literature.

    Is it worthwhile investigating and pursuing interventions that aim to address pathophysiology? Yes. Is it worthwhile addressing interventions that address thoughts and behaviour? Yes. Can you do both together? Of course! With the right framework of pain, biology, psychology and context can co-exist. I doubt Moseley et al. is advocating a purely biological approach to managing CRPS-related pain – and even if they were, I’m sure that would be prefaced by the fact that biology, psychology and context are not seperable (emergent property!) Biologizing CRPS does not mean the experience of pain is being subjected to reductionism, nor would it imply the cognitive and social aspects of the CRPS-related pain are dismissed.

    While CRPS may be better conceptualized as a syndrome (until more data clarifies this), a lack of clear diagnostic criteria does not make it socially constructed. How an individual experiences pain related to CRPS as a social construction is sensible.

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  4. CRPS often sets in after a minor injury or surgery. Patients complain of pain and physicians ignore the complaint. Then, to say to the patient, stop feeling vulnerable and start feeling capable, and still ignoring the pain, is blaming the patient for the pain they experience.

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  5. anne florence says:

    great info Lorimer ,how interesting is that ! pain specialist got lost…
    I would love to see the article ?

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  6. John Quintner says:

    I would have lots of questions for the reviewers, but most of them are unanswerable. All one can say here is that the reviewers see the world of pain through different frames of reference. As Matthew observes above, body/mind substance dualism pervades the content of these reviews. Back to the drawing boards, Lorimer?

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  7. As someone who has CRPS I find some of reviewer 2′s comments very narrow minded. So many people with CRPS often share that they’ve been told the CRPS is all in their head…
    Do social influences play a role in how well a person can manage life with CRPS, of course. With my psychologist and physiotherapist I’ve learnt to trust my effected limbs again. In fact I’ve even leant to trust them enough to do challenging, advanced bush walks (my CRPS is lower body) and I lead a relatively normal life again But has this social way of addressing things stopped the pain. NO, it’s still there but not as severe and I deal with it better. Has it made any difference to the sweating and stiffness and cramps I have from CRPS – NO, none at all. It is unchanged. The colour changes are still there too, although milder.
    My impression of reviewer 2s comments is that if you address the social issues the CRPS will lead to a full recovery… Clearly that isn’t the case in my situation. There is more to CRPS than just a psychological-social cause. (although these variables play a significant role in how someone manages the condition). Health professionals who blame the patient for their pain are doing their patients a huge disservice.

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  8. Michael Ward says:

    Sorry but this is more like going to the pub and listening while a mate unloads about a family argument – we are only getting half the story and little of the context. The most that I would say is that reviewer 2 should not be a reviewer as they are being a gatekeeper to a perspective. Perhaps they should ask for space to provide editorial comment instead. Then again maybe that particular journal sees its role differently and is aiming for a counterbalancing viewpoint – a bit like Phillip Morris and the link between smoking and cancer.

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  9. stuart miller says:

    Hi, a slightly different perspective than some but I fully appreciate Tanya’s perspective (first person narrative is very helpful)…I agree with the view ‘from the pub’ in that we only have part of the story – I’m missing some of Euro final so I’ll write quick. The challenges I identify from reviewer #2′s perspective (or any reductionist perspective) is that it tries to apply one viewpoint that requires an integrated perspective. I get a bit lost in the details but I think (as I’m sure most of you do) that an understanding of complex pain only comes from an integrated analysis of brain, body and environment – organic view. The challenge with reviewer #3′s perspective is that surgeons just like anyone, look at risk analysis in making their decisions on acceptable risk (acceptable space for a nerve to function vs risk of intrusive surgery) and the concept of ‘do no unnecessary harm’ (especially with more experienced surgeons who have worked with lots of challenging cases) usually trumps all. I like the perspective that most human thought is metaphorical so the application of relevant meaningful metaphors on what is happening with the individual patient is helpful. Reviewer 2 has a point in that self efficacy is critical but providing strategies on ways that people can get better themselves is important and then working with them and problem solving together or simply being present is also helpful in the early stages especially if the patient is stressed and ++ cortisol in their system and their frontal lobe is not functioning optimally (behavioral activation is necessary with lots of patients – one viewpoint). Also, very helpful that the practitioner working with the patient stays calm (true meaning of objective).The mountain figures in Explain Pain on graded progression (whether it’s GMI, graded aerobic activity with graded loading to joints, or graded functional activity that is meaningful to the patient) provide a nice picture as do the alteration of thresholds in input to and output of the brain with complex/ chronic pain and is usually well received by patients. Thresholds are usually a helpful metaphor for explanations (antigens and allergan load and symtom presentation as an example). The view of pain as a conscious perception of implied threat to the organism is extremely helpful especially with chronic pain and usually with CRPS but again the reception depends on the perception (making it meaningful and less threatening is key). Having successes are helpful and also having an understanding of the details of the ‘tools’ that the brain uses (how the hand or foot functions in ‘normal’ situations, patterns of movement under ‘threat’ or with altered cortical function, the nature of reflexes etc.) is also helpful. I think understanding ‘awareness’ is helpful and I think Edelman and Tononi’s dynamic core hypothesis or Varela’s resonant cell assemblies theories seem to be more helpful analogies/metaphors for awareness and I fully believe that ‘life is a great continuum in which differences between species are gradual and evolutionary’ so that most primates have similar awareness to most of us (just a matter of degree based on integration) and so on down the line. Finally, I think that the only way that we will improve understanding is through dialogue and I really appreciate the insights of others. Just one viewpoint. Thanks !
    Stu – back to Euro 2012

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  10. Steve Kamper says:

    I’ll preface anything I have to say with an admission that I know very little about CRPS, that being the case I’m happy to be shouted down or ignored (I’m much more certain BTW about how amazing Spain were in the Euro final!) For what it’s worth, it does seem to me though that much of the debate above surrounding the argument with Reviewer 2 could be similarly applied to whiplash injuries.

    I may have missed the point wrt the disagreement with Reviewer 3 but wonder if it could have been settled with some clarification regarding what a diagnosis of CRPS 1 vs. CRPS 2 is used for. It seems your (Loz) point of view is that, when the diagnosis of CRPS (1 or 2) is used for straight prediction (which is always a little difficult when not considered wrt management, but that’s for another day) then maybe the distinction is not important. However, if the diagnosis is used for directing management i.e. surgery or not, then perhaps it becomes very important.

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  11. stuart miller says:

    Couple comments and then questions (hope Moseley et al can respond). Even though the biology of CRPS is still being worked out, the present framework for reconceptualizing complex pain (Moseley et al) is so much better – I don’t see how it discounts the work of psychology. From a nature vs nurture argument, I think that the framework helps in guiding the therapist’s response to patiens with catastrophic pain. There are multiple subtle cues that the treating physician or therapist convey to the patient about their belief of what is happening to the patient and how ‘dangerous’ it is and I think it is only natural for the patient to challenge the physician/therapist’s perspective. Without a strong belief in the present framework and remaining objective (calm) success would be less likely. For me, the ‘paradigm shift’ with approach to patients with CRPS didn’t happen until I had ‘successes’ with patients with CRPS with catastrophic pain/presentation (my own behavioral activation). By successes, I mean a return to meaningful function (not necessarily complete pain elimination or absence of signs of vasomotor disturbance or trophic changes). Again, I trusted in the framework but I was ‘lucky’ to have some brilliant patients that were patient with me. I did use GMI in some cases as part of the treatment regimen but possibly there are still more ways to ‘reset’ or reaccess the system (great to have randomly controlled trials supporting GMI). A couple of these patients had had neurolyses (or decompression & repair of various structures) that were perceived to be the ‘source’ of their pain (hence my view of Reviewer’s #3′s comment about obvious nerve entrapment/involvement with CRPS type 2 and what the surgeon’s obligations are – you can always make them worse).
    Questions – In that we know that rapid functional reorganizaiton of the somatosensory cortex can happen within minutes and if the pain subsides we can see shift back but if the shift persists it is harder to treat (> 2 years not good even for GMI, yes ?) – are we able to observe areas in brain that are hypofunctioning (with decreased O2 blood flow ?) with fMRI, PET or MEG ? How do you monitor catecholamine levels in brain (ex. locuc ceruleus with NE) ? How does one monitor neurotransmitter balance ?
    Finally, what is the best way at present to monitor brain activity patterns to emotional disturbance ? The reason I am asking this last question is that with some of the Parkinson’s patients with severe anxiety who freeze with their movements, the framework of reducing threat to system and providing a novel strategy has been very helpful. The Parkinson’s patients almost universally say that it is fear that freezes them (fear of falling or fear of what is around the next corner) that shuts their movement patterns down. Understanding hypokinesia and reframing it is helpful (LSVT approach and exercise for diffuse brain health effects seems to be very effective). A little extra dopamine helps for short-term but not a long-term strategy for freezing (in my opinion). Thoughts ? I’m rambling – I’ll stop – thanks !

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  12. stuart miller says:

    I really appreciated the dialogue on CRPS and hope to collaborate. I admit to limited understanding. I just finished a course with Judy Colditz, a great hand therapist, who through very thorough understanding of hand anatomy has developed a framework for helping with pathological movement patterns with patients. I would argue that there are multiple ‘normal’ patterns of movement that vary based on the position of objects, size, unloaded, loaded etc. but the identification of sequential activation patterns of various muscles – wrist extensors first, EDC for MCP extension next and then activation of FDP as a ‘normal’ sequence (with a deep awareness of intrinsic function and potential for interosseous tightness) is extremely helpful as a framework for assisting patients with return to normal hand function in the presence of pathology. As well, Judy has provided treatment options that have revolutionized the approach to chronically stiff hands (casting motion to mobilize stiffness or active redirection of movement by constraint). When it comes to the activation patterns in the cortex, this is where the sequential activation patterns of premotor – motor with GMI are extremely helpful as a framework for treatment in the presence of pathology (specifically CRPS) as well as the overriding principle of pain as a conscious correlate of implied threat to the organism. Obviously, it is more complex than this but the framework is brilliant and should be recognized as such. The reviewers are reviewers and are just as subject to confirmation bias as everyone else. What is most important are the needs of the patients that we see (and a need for better understanding in my opinion). The idea of subsystems on subsystems (whether through functional medicine approach or other approaches) is extremely challenging to get your head around as to how it all relates. Someone had referenced ? Dr. Lyons work on subsystems but I wasn’t able to find this. Any help ? Thanks !

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  13. Cathie Livingstone says:

    To Lorimer Moseley and colleagues – keep looking for a physical explanation – In the last 150 years the physical causes of many diseases have been discovered, and the cause of CRPS will eventually be discovered too.
    The view that the patient is responsible because of their mindset as a “damaged vulnerable person” to quote reviewer 2 just delays the discovery of the real cause.
    As a patient who has now had CRPS twice, currently in my hand and 6 years ago in my foot, I object strongly to the view that CRPS is the result of catastrophic thinking. I did not think it was a catastrophe when I kicked my toe the first time, or when I broke my wrist the second time. It was also insulting to have it said that I was responsible for developing CRPS.
    The catastrophes occur when the medical profession fails to recognise, diagnose and treat CRPS BEFORE it has become an excruciating chronic disease . As a patient with a background in neuroscience, I was appalled at the psychobabble approach to explaining the pain associated with my physical injury. I was appalled when I was told there was no pathology despite evidence of an unusual cellular response to that injury, including the obvious PHYSICAL
    signs such as increased sweating, unusual hair growth and vasodilation/constriction, not to mention the massive oedema. Researches may be able to sort it out more quickly if they left their biases about why people experience pain behind. People experience pain because of the release of neurotransmitters. Now if anyone can work out why some people have an unusual cascade of neurotransmitters and develop CRPS (genetics?) and this cascade can be controlled, then the treatment of CRPS will be greatly improved.

    Exercise greatly improves CRPS, but a lack of exercise and favouring the injured limb is probably not the cause.
    Antibiotics cure syphilis, but a lack of antibiotics is not the cause.

    I think CRPS research is where research into melancholy depression was 50 years ago, or stomach ulcer research was 30 years ago. The genetics of melancholic depression is now becoming better understood. And the people who wrongly attributed the cause of stomach ulcers to “stress” rather than to an infection with Helicobacter had to leave their psychobabble explanations behind after the discovery of a real physical cause. And so it will be with CRPS.
    Keep researching with an open mind.
    And everyone will have better success treating this disease if you don’t insult the patients by implying they caused it.

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  14. In the spirit of responding to reviewers, here goes:

    Matthew: I assume you had some level of diagnostic assessment in your subject selection, are you able to divulge that information?
    Absolutely – we used the most common used research criteria, according to a suite of signs and symptoms – we have now put it up under Resources here

    Anne-Florence: It is indeed very interesting and we too would love to see the article…..published. It is currently under review elsewhere and we will keep you posted.

    John Q: Yet again a very challenging bunch of comments from you John. Now that I look for them, however, I see only one – I must be recalling a run of them you made on the neuroscience first person post – many of my thoughts are clearly better left for a face to face cab sav conversation.

    Michael: I am unsure if your mate is reviewer 2 or me. In either case, I think the editorial comment idea is a great one for such situations – the Editor clearly had wind that this reviewer held a very different paradigm to ours and was not commenting on the novelty or rigour of our work so much as the assumptions that filled in the background. I might suggest that to the Editor next time this happens.

    Steve: I agree – an absolute cracker of a final for Spain – they are surely one of the best teams in history now. On other far less important matters, I think your point is very astute and, in short, the distinction does not seem to change management, especially wrt (a groovy acronym I got from you) surgery.

    Stuart: Questions – In that we know that rapid functional reorganizaiton of the somatosensory cortex can happen within minutes and if the pain subsides we can see shift back but if the shift persists it is harder to treat (> 2 years not good even for GMI, yes ?) – are we able to observe areas in brain that are hypofunctioning (with decreased O2 blood flow ?) with fMRI, PET or MEG ? Yes. There is actually a very large literature on this and rather than redo it here, I would refer you to reviews – look up Apkarian, Tracy, Mantyh and you will get some good ones.
    How do you monitor catecholamine levels in brain (ex. locuc ceruleus with NE) ? How does one monitor neurotransmitter balance ? I don’t really know – I presume spectroscopy could do these. Any spectroscopy in pain experts out there?

    Cathie: Thanks for these insights and the encouragement. I agree that there are very clear and obvious physical signs in CRPS and it is disappointing for us all to hear of the psychobabble experience. In defence of the psychobabbler, those of us who spend a lot of time trying to understand CRPS still find it a complex and difficult to untangle condition. There is debate in the research and clinical community, a debate clearly captured by those reviews – some would still argue that CRPS does not actually exist, a position I imagine you find to be abominable. I greatly appreciate your encouragement to keep researching with an open mind – this is a very astute reminder to all of us I guess. In line with that, I think it is important to acknowledge that even altered expression of receptors and shifted immune profiles and cognitively mediated neural modulations are indeed physical. There is compelling evidence that changes in brain and spinal cord function are important in persistent CRPS, whether or not a tissue-based explanation is ever discovered. Finally, I think your final comment will have resonated across the world – ‘everyone will have better success treating this disease if you don’t insult the patients by implying they caused it’

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  15. Dualism rides again – I’m reminded yet again of the paper you and Mick Thacker wrote on the need to remind ourselves that pain is neither “in the brain” nor “in the body” but is instead an emergent biopsychosocial experience that differs depending on context. This is no easy concept to convey! And in any communication between people, there are TWO parties, both of whom have preconceptions and need to “code” and “decode” what is being communicated. It could be that the clinician actually uses quite accurate terminology and tries hard not to give the person with pain the impression that “pain is in your head” but because of lack of common terminology, or anxiety on the part of either person, or any number of other constraints, the message isn’t understood in the way it was intended.
    Catastrophising is often seen as pejorative by many people who have pain, yet it has been so consistently found to be associated with poor prognosis, high distress and high disability. To identify that someone tends to catastrophise doesn’t inevitably “blame the patient” although I will admit that some clinicians do so. Catastrophic thinking simply means a tendency to see the negative or think the worst – I think it’s probable it has adaptive value, or it would have been eliminated along our evolutionary path. It does suggest, however, a bias away from viewing a situation as manageable. It’s the job of all clinicians, whether psychologist, occupational therapist, physician, surgeon, physiotherapist or any other persuasion to help people with persistent pain develop confidence that he or she can cope and live a life worth living (whether or not the pain is reduced).

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  16. It is interesting to note the difficulties patients face in obtaining treatment, when there is so much divided opinions on whether CRPS exists, where it comes from and how to treat it. As a patient myself, living with it for 11 years now, I have be fortunate enough to be taught that it is a condition which I can have some control over. There are some things I cannot control, such as the cramping, the temperature, or sensory and motor loss; however I can control my endurance and my attitude towards it. I can retrain my body to do most of what it did so naturally before. I can also choose to not let it rule my life, I choose to not exist only as the pain.

    I believe that empowering the patient and teaching them about the very nature of chronic pain is so important in this journey, for that helplessness and despair of constant pain and disability becomes a loop with no escape otherwise. It feeds into itself and drives some of us to the point of suicide, particularly when we feel that the treating doctors/specialists aren’t listening to us. The helplessness also fosters the belief that the doctors – they only, are the “magical” ones who hold the answers, and our trust in them becomes broken when they fail us, just as our bodies have. As much as we hate to believe it, no one holds all the answers and that magical cure may not exist.

    It is important for the patient to feel some sense of control, that they can play an active role in their treatment rather than a passive one. Passivity becomes dependence, which means that it becomes harder to not only mobilise the affected limb/s, but the pain becomes an all consuming part of their lives. It is complex by nature, as we all are, therefore needs to have a holistic approach which looks not only at the body parts in pain, but also the emotional condition of the patient. Pain comes from the brain, which is not to say it’s “all in the head”. The physiological changes that occur throughout the body, are often neglected when attempts are made in the affected limb only. These often fail; and with each failed attempt, the patient feels even more powerless and the cycle continues.

    With some control, when the patient is listened to and trusted, comes that confidence that allows them to move beyond that catastrophising, into a new way of living with or without the pain – regardless of it. The potential is so great when there is that trust, not only between treating professionals and patient, but the patient with themselves. People are able to move beyond the pain and disability and become more than the helpless victim of it.

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