Complex regional pain syndrome

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:

  1. 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.
  2. 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.
  3. “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.
  4. 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.

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6 thoughts on “Complex regional pain syndrome

  1. I have had crps in my right hand / arm and neck for over 4 1/2 yrs. My hand is constantly swollen 5 times its size and looks terrible. Finding clothes that fit comfortably without touching the affected area is very difficult. I live in constant pain that is not stopped by any medication. Weather affects it…even loud noises that vibrate through your body affects it. It is something that is very hard to explain to people and have them understand how it affects you. I also suffer severe depression due to having crps.
    I have chosen to try and live my life without being dependant on the strong medication as not only is it hard to focus on my children it surely can’t be good for the body long term. It is a struggle but luckily for me I am stubborn and won’t let it beat me.

    • You’re very courageous to keep going and to avoid strong medications. I don’t think the results from medications are very good anyway, and they keep your brain a bit fuzzy too. I’m not surprised you have moments of depression either – pain is an invader and it takes over as much as it can. I truly hope we can find good effective treatments for CRPS so people like you don’t have to look for ways to get around it all the time. Well done for keeping on going and for keeping your children as your focus – they need you, and they’ll see how much you put into looking after them, and yourself, and gain by that I think. Keep in touch!
      cheers
      Bronnie

  2. My eye caught your article. I presented at the pain society last year on these interventions you refer to and the use of video instead of imagining movements. Some startling good out comes… If you ever wanted to talk about it give me an email or call

    Matt

    • Hi Matt, I remember your presentation – I hope to replicate with some of our paraplegic clients, for a summer studentship. I think it might have some very useful benefits for post SCI neuropathic pain. I’ll let you know how it goes. Thanks for dropping by! cheers
      Bronnie

  3. I was just diagnosed formally today. I had an ankle ligament replacement (carbon fibre) 10 weeks ago, and case removal three weeks ago. Since cast removal things have got worse…..all the symptoms, spotted immediately by my physio …and validated by my husband who is a doctor…but I also saw my own GP today and have been prescribed Duloxetine (on top of the paracetomol, codeine, and naproxen I am already taking). Also referred to specialist pain team at hospital where my surgical consultant is based. I see my surgeon in mid August but doubt he will be able to do more. Now I need to know how to get on with management of this and fast…I have read about how it can become chronic so all advice greatfully accepted. Joy

    • Hi Joy, and thanks for taking the time to comment. It sounds like you’ve been in the wars, and I am sorry to hear you’ve been diagnosed with CRPS. There are a few things you can do early on in the management of CRPS. The first thing to do is to take some time to look at, and touch your ankle. This sounds weird, but one of the things your brain wants is to know that your foot still belongs to you. If you find that too difficult to do, it could be worth using a mirrorbox – or a mirror placed between your legs so you can see both your GOOD leg and the reflection of your GOOD leg. Just sitting there with the mirror reflecting your GOOD leg can fool your brain into thinking that everything is normal and your painful isn’t painful. If you can manage that, then you can think about doing some simple movements with your ankle – do them with both legs, but watch the reflection of your good leg in the mirror. This is again designed to fool your brain into thinking your leg is feeling fine. If any of these steps increases your pain, stop. Keep taking the medications, you’re on a good mixture although often it won’t change your pain intensity very much.
      I think your best bet is to keep in touch with your pain management team, making sure that you have a good physiotherapist and occupational therapist in particular. You might find it helpful to see a psychologist or social worker (or the OT or PT) to learn some coping strategies to maintain calm if your pain goes nuts. I think deep, slow breathing is a good start.
      Please let me know how things go for you, and remember, this advice is not intended to replace anything your healthcare team advise.

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