Comments on: The Brain in CRPS-More Barriers or New Opportunities

By: Bronnie Thompson

Bronnie Thompson — Mon, 04 Jan 2010 04:44:54 +0000

Hi there
I just had to respond to the ‘Information is to behaviour change…’ – it was Nick Kendall who introduced me to it and repeated it over & again in the 10 years we worked together! Something must have made the Kiwi’s adopt it methinks!
Anyway, I took a very quick look at the cigarette cessation literature, and one of the main reasons Motivational interviewing was introduced in addiction services was because of the spectacular failure of ‘information’ and ‘education’ – even kindly, detailed and personalised education/information – to change quit rates. (A recent paper to illustrate is: Etter, J.-F. (2007). Informing smokers on additives in cigarettes: A randomized trial. Patient Education and Counseling, 66(2), 188-191.)
The thing is, you and I probably have loads of things we ‘never get around to doing’ – and it’s not because of lack of understanding, it’s simply that other things are more important. Something that we do know increases reports of pain intensity and distress is lack of a sense of control and an expectation that to manage chronic pain requires the same set of behaviours as is applied to acute pain. So… I’m not at all surprised that people report reduced distress, increased self efficacy and even reduced disability after they’ve received ‘information’ or ‘education’. It’s certainly a component of pain management. BUT the words ‘education’ or ‘information’ can trivialise the process that is used by a sensitive and well-informed clinician. While you and I might go about helping someone understand their pain using things like guided exploration, mini-experiments and Socratic questioning (probably because the psychologists got to us early on!), to many clinicians, ‘education’ and ‘information’ are simply standardised bits of information-dumping. And this is what distresses me when those words are used – because unless the person reconceptualises their own role in managing their pain, this ‘information’ floats over the top and fails to make changes to behaviour. And I think you and I are coming from the same place when we say we want to see people use this approach as a platform from which to launch the comprehensive pain management programme.

BTW so far I see that rough 33% ‘improvement’ rate being applied to many different treatments – including standard Interdisciplinary Pain Management using a CBT approach. It does depend a lot on what you count as ‘improvement’ – reduced pain and improved gait pattern in clinic, may not translate into improved engagement in return to work or better relationships with others. At least, that’s been our outcome except for people with CRPS of less than 6 months duration. And we do see probably the most complex patients who present with not only CRPS but numerous other psychosocial and functional problems that complicate their disability.

I guess I’d love to see some guideline as to when to prioritise pain reduction as opposed to increased function – back to the ‘what works for whom and when’. And most importantly, how to integrate the motor imagery (etc) within other rehabilitation approaches such as vocational management and relationships etc.

I don’t think there is much argument that CRPS is an incredibly complex disorder, managing it isn’t going to be a case of simple question: simple answer, and that’s what makes both the tragedy for people with the problem, and the challenge and intrigue for researchers and clinicians alike.

I’m with you – let’s keep this discussion going, it’s great!
cheers
Bronnie

By: Lorimer

Lorimer — Mon, 04 Jan 2010 03:48:36 +0000

These are stellar contributions – great GREAT work! Some genuine insight and wisdom. I have a few responses. First, re education. My PhD supervisor, Prof Michael Nicholas at Uni Sydney, absolutely loves that saying – Education to behaviour change….. I am less convinced that education should be bundled up as one thing here. I reckon that it is the type of education that matters. I have done several RCT’s that show that teaching people about the biology of their pain directly changes behaviour – as measured by pain ratings on a straight leg raise and by functional measures. So, maybe Fordyce was right about that as far as telling people that smoking kills, or that one with pain should move despite pain, but i am not sure if the same lack of effect would occur if we sat down with a smoker and EXPLAINED it all to them in a memorable, interesting and intelligible way. clearly of course, we can’t JUST teach people things – i see it as the platform on which to launch the full training program.
Re what works for whom. This is critical and i share Bronnie’s reluctance to get carried away on a ‘new’ treatment. Those who have heard me speak on this stuff will know that i am very keen to emphasise that these data are early. I firmly believe we should test a treatment in an RCT before we conclude it works. We now have 3 RCTs that suggest graded motor imagery works for long term CRPS. What that really means is that for one person who would not respond to ongoing treatment to get 50% better with graded motor imagery, 3 patients need to do it. So, for Bronnie’s patients who are end of the line, it sort of works out to a 33% success rate. This, believe it or not, is excellent for chronic CRPS.
One thing I have learnt about these approaches is that we should consider it like we would stroke rehab. I say to patients that they are embarking on a long rehab program that will take weeks, and then months, to get real gains. For them to participate, they need, i believe, to understand. This is where the education bit comes in. I think we need to convince them that, in chronic CRPS, the problem is in the brain and we need to train the brain. etc etc. Relevant to this is my observation that most patients do not do enough training to make changes happen. We have audited patients and those who don’t succeed usually don’t train more than 20-30 mins a day. If they were stroke patients, we would not expect this to work.
Regardless of these observations, i am with Bronnie in saying that there is still so much we don’t know about CRPS and we are still a long way from knowing that we can fix it. Finally, i want to iterate how much i LOVE these contributions. Thanks.

By: Wednesday Round Up #96 « Neuroanthropology

Wednesday Round Up #96 « Neuroanthropology — Thu, 31 Dec 2009 00:33:41 +0000

[...] The Brain in CRPS – More Barriers or New Opportunities An engaging overview of what’s known about Complex Regional Pain Syndrome in terms of body [...]

By: Nickie

Nickie — Thu, 24 Dec 2009 21:25:17 +0000

This article is absolutely great! I’ve often noticed “weird stuff” with my body and CRPS, I am especially thinking of how we noticed that when I try to tell you where my leg is in space, I think it’s farther forward than it really is. I’d also noticed that it feels bigger to me, but looked smaller to the sighted people around me. It would be interesting to figure out how this applies when one can’t see.

It’s so exciting to see these studies and this information. I always learn a ton from your articles!

By: links for 2009-12-23 « Fantasising Zombies

links for 2009-12-23 « Fantasising Zombies — Thu, 24 Dec 2009 01:04:02 +0000

[...] The Brain in CRPS-More Barriers or New Opportunities States of mind:- [...]

By: Bronnie Thompson

Bronnie Thompson — Wed, 23 Dec 2009 23:07:27 +0000

It’s great to know that some people, like you, are helped with mirror therapy – and it’s always great to hear of people recovering. In my job and at the centre in which I work, sadly we don’t see that many probably because we are a tertiary treatment centre often thought of as ‘the last resort’. As with any treatment, it’s important to work out what works for whom and when. The problem with any treatment is that it can become that ‘one size fits all’ and for the people for whom it doesn’t work, it can feel like they’ve failed rather than a treatment simply not working in their situation.
We have found that while some people regain good function in therapy with this type of treatment, resumption of function including working, thinking of oneself as a person first rather than the pain, and returning to a ‘normal’ lifestyle doesn’t occur. Whether this is because their particular combination of problems is not simply about retraining the brain to resolve the CRPS (and actually requires other components to be added), or because as treatment providers we haven’t been astute enough to tailor the treatment to fit them, I don’t know. As ever, it really is still an hypothesis testing situation – we hypothesise that this problem is arising because of X,Y, Z and go about systematically testing each hypothesis. Until we have a much clearer idea of how and why and which mechanisms are involved, I think we need to be cautious about endorsing any single treatment modality. Call me conservative, but in pain management so often I’ve seen a ‘new wave’ of treatment come in with a hiss and a roar (and even some good science!) only to find out later that we need to be careful to work out what works for whom and when. I see a theme happening?!
cheers
Bronnie

By: jeisea

jeisea — Wed, 23 Dec 2009 11:39:49 +0000

Hope you don’t mind if I add abit here. Bronnie I had crps for over 10 years and was diagnosed with a whole body problem including dysautonomia involving cardiac symptoms etc. Over a long period I used mirror therapy to relieve one sided flare ups. This in time resulted in a gradual reduction in overall pain and symptoms. After many months I had a period of a few days with no major flare. This increased in time the more I used mirror therapy. Mirror therapy wasn’t all I did but it was the single thing that made a big difference and gave me some control over the management of symptoms. I’m in remission now. All crps symptoms and dysautonomia have gone. Dr Moseley’s description of distorted perception of size of affected body part is accurate in my case. I now perceive my body to be normal. Mirror therapy may not work for everyone. However it has worked for me with chronic, long term, previously considered intractable crps. The few times it hasn’t worked I realized in the end t was because just I wasn’t doing it the right.

By: Bronnie Thompson

Bronnie Thompson — Wed, 23 Dec 2009 07:32:21 +0000

Great writing as ever! I guess I wonder about a couple of things.
The first is your point about ‘educating’ patients. I think this is a misnomer – we’re not educating as much as helping people reconceptualise or reinterpret their situation. As Bill Fordyce is reputed to have said: ‘information is to behaviour change as spaghetti is to a brick’. Informing or educating people is insufficient – or we wouldn’t have people who were overweight, didn’t exercise or smoked! You hint at this when you describe it as ‘so that they ‘get it’ in the marrow of their bones’.
I wonder too whether describing the brain changes that occur when people are treated with motor imagery actually changes our clinical practice: after all for years and years we have carried out graded exposure for phobia, with many people using imagery (with hypnosis), virtual reality and gradually increasing tolerance or coping with their experience. Are we really only finally uncovering the underlying neural mechanisms as to how these processes ‘work’?
As a clinician working with people who have long-standing CRPS, who find themselves utterly disappointed when mirrorbox and brain training don’t work, I’m also worried about this approach being touted as a ‘one size fits all’. I have no doubt at all that it’s effective in sub-acute cases, and especially in cases without other psychosocial factors, but I do worry that it’s less effective in the more complex and long-standing cases – it will be great one day to know ‘what works for whom and when’.

Regarding the possible evolutionary rationale for CRPS? I don’t think there is one. I think it’s just possible that, like in every other body system we have, there are times the nervous system fails to function. Perhaps the main learning is that we’re made to move, and with good acute analgesia we can keep moving, and maybe we can reduce the incidence of this nasty disorder.