Pain is often the main symptom in people with Complex Regional Pain Syndrome (CRPS). You can be protective of the sore area, or you may avoid using the limb. While this approach can be helpful in the first few days after the injury, it quickly becomes unhelpful as the days and weeks go by. Your limb may get stiffer and more painful and you are less able to move this affected body part - you may even feel like it does not belong to you.
The necessary and normal information that the brain receives when the body moves, is reduced when you stop moving your painful limb. Over time it becomes harder for you to recognise your body part and what it is doing and where it is in space. Moving that limb or body part does not feel normal or is not so easy and it may even feel like it belongs to someone else.
The good news is that the brain is “plastic” not hard-wired. This means that the brain can be taught how to move more normally and not to interpret normal movement and touch as painful and pain as a threat. With practice, the mind and body can re-synchronize and start to function more normally again.
Living with CRPS
When you have CRPS, the pain and other features are a lot more than might be expected for the original injury. Unfortunately, you might even be told "it’s all in your head"! We don’t yet fully understand the reasons why CRPS happens. Your pain and other features of CRPS can get worse if you are:
- under emotional stress
- if the temperature is cold
- you are in an unfamiliar environment.
Everyday touch, feel, and movements can be very painful and this can be distressing. Other body parts become more sensitive too (meaning that the pain can spread) and moving the body can become more difficult (not just the sore part but other parts too or maybe half your body or one whole limb).
The good news is that in many cases these changes can be reversible with careful re-training techniques. Re-training the mind/brain and body to interpret movement, touch and recognition of the body part more normally is an important part of this process.
How do you treat and manage CRPS?
Based on the existing evidence, it is difficult to draw firm conclusions as to which therapies should be offered to people with CRPS. Better quality research is necessary to reduce the uncertainty and increase the confidence in the recommendations that can be made. Here, we present what is current scientific consensus regarding management options.
Most people will also need to see a doctor and a trained health care professional. The aim here is to have the right advice and the right treatment at the right time and by the right team. This team might include:
- a GP who understands CRPS and can advise you regarding treatment options
- a physiotherapist skilled in CRPS management (ask if they have this training or can refer you to someone who does)
- you may also need to consult a clinical psychologist to help you with treatment and management techniques such as mindfulness training and strategies to cope with pain or low mood
- sometimes it can be valuable to see a pain medicine specialist (they can provide expert advice regarding pain modifying techniques and medications).
People with CRPS need good medical support and treatment. While this is not always possible, especially if you live in a rural or remote area, this website can help guide you in things that help improve your pain and function.
Recommended treatment combinations
Because pain involves the whole person, to get the best outcomes treatments and management usually require a combination of some of the following approaches:
- relaxation techniques; yoga; breathing
- mindfulness based relaxation
- activity and movement
- coping and managing your pain
- use of pain medicines and medical procedures.
What medications can help manage CRPS?
Medication can help but is not recommended as a standalone approach. Medication is guided by your clinical presentation and so it is important to discuss this with your doctor so you get the right medication.
Medications vary and may be prescribed to help reduce swelling, inflammation, pain, skin temperature problems or muscle stiffness and shaking. It is also worth remembering that the brain’s chemicals and network connections involved in the lived experience of pain share similar pathways to those for the experience of depression and anxiety, so medications to help with depression are often used in chronic pain, however in differing doses.
If you are experiencing low mood or anxiety, medication may help but it is also important to seek help for ways in which you can better cope and approach pain. Sometimes it may be recommended to have an intervention or procedure. These usually include either an intravenous regional block (using Guanethadine or another agent) or a sympathetic block. You can find out more information about medicines by reading our medicines and procedures training module.
What about physiotherapy and CRPS?
A Physiotherapist with skills in CRPS treatment and management is very important to your recovery. There are a number of things physiotherapists can help you with such as Graded Motor Imagery Program (GMI) and Mirror Therapy.
Graded Motor Imagery Program
The Graded Motor Imagery Program (GMI) was developed by Professor Lorimer Moseley and is based on research and clinical studies. What we know about CRPS is that normal inputs such as touch, stroking and movement are misinterpreted as painful. This ongoing “painful” interpretation is a big part of the problem. GMI helps you to re-train the brain to function more normally and this has been shown to help decrease pain and improve function. The GMI program takes a stepped approach on how you can re-train, how often and for how long training is recommended.
What does the GMI program involve?
Normally we have a mental map of where the body is in space and this allows us to function without having to constantly check where we put our hand to pick up a glass or which is the left or right hand.
This ability can be lost in CRPS making it hard to recognise which is the right or left side of the body. This altered function seems to be part of the reason that pain persists in CRPS.
The GMI program helps you to re-train the recognition of where the body is in space. For more information about GMI, go to the GMI website.
How does the GMI program work?
GMI uses two main tools including:
- flash cards - which are a random collection of pictures of hands and feet in different postures and positions and doing different tasks. They are used to help re-train the ability to recognise where the body or body part is in space
- a computer program called ‘Recognise’
- this tool uses the same pictures as in the flash cards and also assesses your accuracy (how many of the positions and postures you recognise correctly as left or right side) and the time it took for you to record your response
- this means that you can take a step-by-step approach to improving your recognition ability and this is usually associated with a decrease in pain and an improvement in your function.
You can see an example of Recognise below.
What else could I do at home?
You have a range of options that you can do at home to help you manage CRPS including:
- you could easily browse through a magazine and look at pictures of hands and feet and work out which is right and left
- when sitting on a bus or train, look at people around you and try and spot which are right and left hands or feet
- imagining movements or your CRPS limb by using certain postures or positions –Imagery is a great way of ‘exercising’ the mind/brain using a progressive approach
- this progressive approach reduces the chance of pain flares and helps you make better progress. You may find our Mindfulness and Pain module helpful.
What is Mirror Therapy?
You may of heard of Mirror Therapy. Watch the video below to get a better understanding of what Mirror Therapy is and what it involves.
In Mirror Therapy, your CRPS limb is placed inside a box with a mirror on one side. Your unaffected or “good” limb is placed near the mirror.
- This means you trick your brain! Here you see a reflection of your good limb, but it appears as if it were the opposite limb or the CRPS limb
- Moving the good limb tricks your brain into thinking it is the sore limb you are moving, but because it is your good limb, there is no pain!
- This trick or illusion helps to teach the brain that you can move the sore limb without pain
- This mirror therapy is simple, you can make your own mirror and take a step-by-step approach to improving your pain and function
- If you have access to a physiotherapist, ask the physiotherapist to demonstrate the approach and help you set out a step-by-step approach to avoid pain flare ups.
Why do I have trouble knowing where I am touched on my sore limb?
You may have noticed that if your painful area is touched by something or by someone, you are less able to identify where you were touched and what that object was. This ability is called touch acuity and is reduced when you have CRPS.
Training the brain to know what type of object (rough, smooth, round, square) is touching the painful limb and where the object is touching the limb helps to reduce the pain felt in the affected limb. Using a mirror, the ability for you to recognise the type of object and location of an object on the painful limb is greater if you look toward the body part being stimulated (this tricks you into thinking it is the painful limb being touched when looking at the mirror).
What if my mood is low or if I am not coping, distressed and anxious?
It is normal to have periods when you feel frustrated, low in mood, anxious and not coping. Remember to be kind to yourself, the pain is not your fault. You may benefit from utilising our pain management modules. You may need additional psychological support. If you feel you need additional support, it is important to contact your GP or health care professional for further assistance as soon as possible.
For more information about CRPS management visit the International Research Foundation for RSP / CRPS. You can find consumer summaries though Cochrane Summaries. Alternatively, if you need to speak to your GP or health care professional, please seek further assistance.