Thanks to an enquiry on my About page, I’ve been prompted to read a little about pain exposure therapy. This is a little-known approach to helping people with CRPS type I (the type that is NOT associated with a peripheral nerve injury. Type II is the same phenomenon but IS associated with an injury to the nerve.)
Graded exposure is an approach commonly adopted to help those people who are afraid of, or phobic about, a “thing”. Most of us will know about spider phobia treatment where people are progressively encouraged to stay with feelings of anxiety and distress while being shown and eventually handling a spider. Graded exposure has also been used to help people who are fearful of experiencing painful flare-ups and therefore avoid doing things – it’s been a successful approach especially for people who report high levels of pain catastrophising (or, as I like to put it, “freaking out” at fluctuations in pain). I’ve reported on graded exposure several times in my blog over the years, and use the approach myself with great success. BUT this approach requires some foundation skills for both the clinician AND the person living with pain.
Before I delve into the skills I think clinicians and people living with pain need, let me outline the treatment and it’s rationale.
The basis for this treatment is the idea that if pain is going to be present, and it no longer represents an indication of the state of the tissues, then avoiding movements is no longer necessary for tissue healing. At the same time, people generally don’t want to do things that flare pain up, and so they tend to avoid those movements. The issue is then much more about how to gradually get used to the fluctuations in pain (ie freak out less) while at the same time beginning to do things with the painful limb. Supporting this approach is some basic science that suggests the less we use an area of our body, the more distorted our brain’s representation of that area becomes.
So, after discussing basic information about pain and tissues, in pain exposure therapy, clinicians work together with the person living with pain to:
- begin doing movements that are usually avoided
- avoid responding to any behaviour that is usually associated with experiencing pain – things like grimacing, groaning, saying ouch, and rubbing the area
- provide progressively more demanding input to the painful area despite changes in reported pain
- encourage increased normal use of the area within daily life – eg holding onto bottles, cups, utensils, putting shoes and sox on, walking normally
In addition, clinicians use this type of therapy also prescribe many exercises to be carried out frequently through the day despite painful flareups. Sometimes clinicians will restrain the other unaffected limb so that the painful limb HAS to be used just to get things done.
Some of you reading this blog will be reminded of the work by Doidge in which a very similar approach is used during rehabilitation from stroke or traumatic brain injury – by using the limbs in a normal way, new neuronal pathways are developed, allowing the limb to eventually return to pretty much normal function.
Others of you will probably be saying “how cruel!” and “but Moseley and Butler say don’t do things that increase pain because – neurotags!”
Here’s my take on it.
Currently there exist very few, if any, randomised controlled trials of this approach for CRPS I. Actually, there are few RCTs for ANY form of CRPS and ANY treatment for CRPS.
This means we don’t have a great deal of evidence to go on when trying to decide the best approach for managing the functional problems experienced by people living with CRPS. We know that for some people mirror therapy is helpful, while there is less support for graded motor imagery (Bowering, O’Connel, Tabor, Catley et al, 2013). We know there are very few pharmaceuticals that provide any pain reduction for people living with CRPS. There is “low quality evidence that bisphosphonates, calcitonin or a daily course of intravenous ketamine may be effective for pain when compared with placebo” (O’Connell, Benedict, McAuley, Marston et al, 2013), but otherwise very little else has been shown to have any effect at all either on pain intensity or function.
We do know that physiotherapy and occupational therapy focusing on function rather than pain reduction may have some longterm positive effects (O’Connell, Benedict, McAuley, Marston et al, 2013), and we also know that graded exposure treatments for other types of pain problem, especially low back pain, have been effective (studied since 2001).
BUT here’s the thing. Unless the person living with chronic pain is comfortable with the idea that this approach directly confronts their fear of painful flare-ups, it’s just not going to float. Both the clinician and the person living with pain need to understand the underlying principles of this approach – and have some skills to deal with the very likely distress that will emerge when pain inevitably flares up.
What we should also know is that this approach does not try to reduce pain – although for many people, according to one study (Barnhoorn, Oostendorp, van Dongen et al, 2012) pain does reduce. Yet for others, pain increases – but people can do more.
Where do I stand on this?
I think it’s worth a try but only if the person conducting the therapy is VERY comfortable with the underlying principles of graded exposure as it’s used for phobia. AND has skills to manage their own discomfort at seeing someone else experiencing high levels of distress. To me this means having had some additional training in graded exposure for phobia, and lots of practice at using mindfulness and other forms of maintaining empathy despite seeing another person being distressed. It’s not easy to be empathic without either losing your own cool – or “giving in” to the distress of the person – and that just undoes the therapy.
It also means the person participating in the therapy, ie the patient, must be completely on board with it, and not just the person but also his/her healthcare team AND family. AND have some skills to deal with distress that comes with exacerbations of pain. This approach is not for the faint-hearted, or for anyone who feels coerced into participating in the treatment without feeling very confident that they can maintain their involvement.
Barnhoorn, K. J., van de Meent, H., van Dongen, R. T. M., Klomp, F. P., Groenewoud, H., Samwel, H., . . . Staal, J. B. (2015). Pain exposure physical therapy (pept) compared to conventional treatment in complex regional pain syndrome type 1: A randomised controlled trial. BMJ Open, 5(12), e008283. doi:10.1136/bmjopen-2015-008283
Barnhoorn, K. J., Oostendorp, R. A., van Dongen, R. T., Klomp, F. P., Samwel, H., van der Wilt, G. J., . . . Frolke, J. P. (2012). The effectiveness and cost evaluation of pain exposure physical therapy and conventional therapy in patients with complex regional pain syndrome type 1. Rationale and design of a randomized controlled trial. BMC Musculoskeletal Disorders, 13, 58.
Barnhoorn, K. J., Staal, J. B., van Dongen, R. T., Frolke, J. P., Klomp, F. P., van de Meent, H., . . . Nijhuis-van der Sanden, M. W. (2014). Are pain-related fears mediators for reducing disability and pain in patients with complex regional pain syndrome type 1? An explorative analysis on pain exposure physical therapy. PLoS ONE [Electronic Resource], 10(4), e0123008
Bowering, K. J., O’Connell, N. E., Tabor, A., Catley, M. J., Leake, H. B., Moseley, G. L., & Stanton, T. R. (2013). The effects of graded motor imagery and its components on chronic pain: A systematic review and meta-analysis. Journal of Pain, 14(1), 3-13
Ek, J. W., van Gijn, J. C., Samwel, H., van Egmond, J., Klomp, F. P., & van Dongen, R. T. (2009). Pain exposure physical therapy may be a safe and effective treatment for longstanding complex regional pain syndrome type 1: A case series. Clinical Rehabilitation, 23(12), 1059-1066.
O’Connell Neil, E., Wand Benedict, M., McAuley, J., Marston, L., & Moseley, G. L. (2013). Interventions for treating pain and disability in adults with complex regional pain syndrome- an overview of systematic reviews. Cochrane Database of Systematic Reviews, (4).
van de Meent, H., Oerlemans, M., Bruggeman, A., Klomp, F., van Dongen, R., Oostendorp, R., & Frolke, J. P. (2011). Safety of “pain exposure” physical therapy in patients with complex regional pain syndrome type 1. Pain, 152(6), 1431-1438.