Some of you will know what complex regional pain syndrome is – others might not, so I’ll describe it for you.
Imagine your hand (or it could be a foot, an ear, or any part of the body really). If you couldn’t imagine your hand, but instead your brain told you not to even think about it, you could have CRPS (pronounced CRIPS). If that hand also felt hot or cold, swollen (even if it’s not swollen), if the skin was shiny, if hair and nail growth was different from the other hand, if even a breath of wind or the water when you wash your hands burned, if you felt you couldn’t bear moving your hand – then that’s pretty much what CRPS feels like, from what I’ve been told by patients.
CRPS develops after a very small injury (although it can develop after major ones too – but more likely to be detected), something like a sprain, or a scrape, or even a rose bush scratch, or a simple fracture. Fairly quickly afterwards the symptoms appear, and then it’s all on.
CRPS is difficult to manage because there are many different body systems thought to be involved. Some people think it’s inflammatory, some people think it’s your brain, some think it’s about your sympathetic nervous system going into overdrive, and it could possibly be all of these things.
What we do know is that none of our current treatments are very good. They’re a bit hit and miss, and many of the medical ones (drugs and injections and infusions) are both expensive and take up time and have some unpleasant side effects. Of the nonpharmacological ones, there are probably four that might offer some hope – but again, they’re a bit hit and miss. At least they don’t seem to have some of the nastier side effects, though.
The four to think about are:
- Graded motor imagery – this involves imagining your limb moving, and can involve learning to identify whether a picture of a hand (or the limb) is your left hand or your right hand. This uses the parts of your brain involved in knowing what your body feels like, and can help your brain settle down some of its sensitivity and so reduce your pain. It’s very time-intensive, you need to keep doing the exercises (imagined movements, recognising your limb) every hour every day. And even then you may not get a reduction in your pain. But for some people it does reduce the pain and improve the movements.
- Mirror therapy – everyone’s probably seen the House episode where he helps a guy with phantom pain by using a mirror to show him his OTHER leg. Well, it’s not quite as simple as that, but mirror therapy can be helpful for some people. Essentially you reflect your good limb in the mirror and fool your brain into thinking it’s your painful limb. With a bit of practice and gradually increasing the challenge (moving your limb and so on), some people can find they get good pain relief. Like most things it’s not foolproof. Some people can good results, some people do for a while and then it disappears, and some people experience no change at all. But at least it’s simple, doesn’t invade your body, and it’s pretty cheap. Lots of YouTube videos show you how to go about it.
- “Normal” hand therapy by an occupational therapist or physiotherapist – this usually involves doing a series of exercises and using various textures to desensitise your limb. Like GMI and mirror therapy it involves regular and frequent use of the techniques to get a result. And like both of these other approaches, it may help or it may not. It’s pretty inexpensive (especially the desensitisation process which is just different types of cloth and textures that you rub over your painful limb), and the exercises help you gain confidence to use your limb more normally – possibly that’s because you have someone like a therapist handy to help remind you that you’ll be safe.
- Graded exposure – this is a fairly uncommon approach to CRPS and doesn’t focus on reducing the pain, instead it focuses on reducing your fear of your pain increasing and getting out of hand (no pun intended!). You develop a hierarchy of activities you don’t like doing, and, beginning at the one you are least bothered about, you use mindfulness and relaxation to help you begin doing the things you don’t like doing. The aim is to help you gain confidence that you CAN manage pain increases, and still be OK, while also working on you using your limb. It’s probably best started with a therapist who can help you, because at first it’s pretty scary! But people I’ve worked with soon get quite confident about facing their fears and begin to choose things themselves and make very quick progress.
CRPS is a difficult pain problem to live with. It can be quite disfiguring for some, but not all. The good thing is that it’s becoming more easily identified early, giving you hope that someone will help you manage what can be a complicated pain problem. If you’ve managed to learn to live with your CRPS, drop me a line and let me know how you’ve done it! I’m sure other people would really like to know too.