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Complex regional pain syndrome medicalises limb pain

BMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g2631 (Published 28 April 2014) Cite this as: BMJ 2014;348:g2631

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Re: Complex regional pain syndrome medicalises limb pain

Bass makes a number of controversial claims about CRPS Type I and where these concern the effects on patients of diagnosis and treatment, and fundamental changes are suggested to address these effects, I suggest a response from the patient perspective is pertinent.

I have had CRPS Type I for nearly 13 years, have been running a support group at my local hospital for CRPS patients for more than 5 years and am involved as a patient researcher alongside highly respected scientists and clinicians in current international CRPS studies.

According to Bass's view, my fellow sufferers and I are likely to have been damaged by our medical teams, been given a label of CRPS, led to believe we have a disease, when in fact we simply have 'armache' and / or 'legache', and subsequently we have become disabled through our resultant introspection and focus on being 'sick' and as a result of the change in how the medical teams view us. Further, the fact we have become disabled indicates we were vulnerable candidates; pre-existing psychosocial factors caused the signs and symptoms. Had we been 'identified on a simple rating scale' as being 'at risk of developing chronic pain' and 'referred at an earlier stage for the appropriate intervention' it seems our suffering would have been prevented. All this is a shocking indictment of current medical care, – if correct!

It is highly significant that this does not accord well with the patient experience with which I am familiar, because much of Bass's view is based on the assumption that his portrayal is an accurate generalisation of the experience of the CRPS patient at and post diagnosis. Bass overlooks the pre-diagnosis period but it is here, too, that evidence may be found to dispute his claims regarding the effect of diagnosis on a patient, and to question the wisdom of his call to replace the label, CRPS, with non-disease, common symptom descriptors.

Several patients have spoken of the pre-diagnosis period as the worst, a 'limbo' period characterised by increasing desperation, with very real, exhausting and distressing symptoms, worsened by the humiliating effect of trivialisation of these by doctors clearly unable to imagine the patient's experience. Bass's suggestion of offering the term 'armache' or 'legache' to prevent the patient from believing they have a disease and are 'sick' is a classic example of such trivialisation. The terms miss the mark of experience by such a gulf that the patient not only feels utterly misunderstood, but often senses an implied label, not of a physical condition, but of some psychosomatic disorder.

Bass's further suggestion that instead of a diagnosis it might be more helpful to offer the patient an assessment of 'disproportionate pain', does seem to indicate appreciation that the pain is more severe than 'armache' or 'legache', but would, I fear, be perceived as indication that the doctor has no idea what the problem is as s/he merely echoes one aspect of the symptoms the patient has already described. Patients report the failure of a doctor to offer anything that helps them make sense of their symptoms and provide some form of treatment, as extremely frustrating.

In stark contrast to Bass's view that diagnosis marks the downward spiral into belief that we are sick, and disability becomes the inevitable outcome as our affected limbs are immobilised, it has been my experience that diagnosis with CRPS has been the key positive turning point. It has brought relief through being placed with support onto a purposeful track of active intervention instead of struggling aimlessly, and often alone, in a dark and distressing wilderness. Frequently our fears prior to diagnosis had been that we had a serious disease; we had had little hope as we struggled already to cope with disability. For us it was not the label of CRPS that brought about these things!

With the support of a specialist clinician who validated what had seemed so bizarre, a new hope was kindled alongside determination to work hard, with support and encouragement of dedicated therapists, towards agreed realistic goals. Limbs that unconsciously we had learnt to protect by immobilising, we were now being encouraged to move. We knew a bit more about what we were dealing with and we met other people who shared the diagnosis – a huge step forward to know others were also afflicted by this bizarre and indescribably painful condition that family, friends and the outside world were unable to understand.

It seems the only treatment Bass deems appropriate is psychological intervention. Where is the evidence that this alone is sufficient and effective? I value highly the contribution a suitably skilled clinical psychologist has been able to offer patients in our support group as they struggle to cope with their symptoms, but without access to other treatments, individually-selected by the specialist clinician, I fear that ongoing symptoms would lead to despair and in all likelihood, increasing physical disability.

I stated earlier that if Bass is correct in his views then it is shocking that CRPS diagnosis continues. But what if Bass's views are not correct, as the patient experience I describe suggests? Even more shocking would be the damage of Bass's views once seeded in the minds of doctors, junior or senior, reading his article. For the affected patient much is at stake, so on behalf of all those who currently fulfil the agreed criteria for CRPS diagnosis, or shall do in the future, I urge all who have read Bass's article to examine up-to-date, high quality, relevant evidence on which the UK guidelines [i] are based before forming a firm opinion that will dictate how they will respond to patients displaying signs and symptoms of CRPS. It is bad enough to endure the physical, emotional and social effects of the condition, without having to bear the additional insult of a doctor's trivialising judgement instead of the diagnosis that can open the door to emotional relief, appropriate support and treatment!

Reference:
[i] Goebel A, Barker CH, Turner-Stokes L et al. Complex regional pain syndrome in adults: UK guidelines for diagnosis, referral and management in primary and secondary care. London: RCP, 2012.

Competing interests: No competing interests

19 June 2014
Robyn E Connett
Patient Researcher
Royal Devon and Exeter Hospital
Barrack Road Exeter EX2 5DW