My 17yr old daughter has complex regional pain syndrome for the second time, what are the coping mechanisms for complex regional pain syndrome?

From your description, there is ongoing pain from injury to ligaments and a question of CRPS. Pure CRPS is mediated by the Sympathetic Nervous System, which is part of the Autonomic Nervous System. If there is pain from damage, it may respond to anti inflammatory medications and standard pain killers. On the other hand, if there is CRPS present, the treatment becomes far more complex and can range from neuropathic agents and corticosteriods. The latest studies tend to indicate that there are also perceptual abnormalities as well. Strategies to correct this include using a mirror box. It seems that if the hand is percieved as “normal” by the brain, the pain lessens. There are also psychological strategies that will lessen the impact of the pain. Maintaining normal activity also contributes to lowering the level of the pain. Negative moods and poor sleep have a negative impact on pain and if present, should be addressed.

Hi,

Following on from Dr Leow's comments re CRPS.

I find it relevant that your daughter has had CRPS symptoms following injuries to the right side of her body. Our body displays a concept called laterality - meaning affecting one side of our body.

As Dr Leow reported, medical studies show that perceptual abnormalities are part of the explaination as to why CRPS symptoms continue and aggravated with simple movements.

I recently attended a conference that discussed CRPS. A good term was brought up regarding CRPS  - an expectation and reality mismatch. This means that with CRPS, the brain expects that a certain movement result in a specific response, however the response provided is not was expected - hence the mismatch.

As Dr Leow alluded to, mirror box therapy and graded motor imagery are helpful with CRPS. If the brain can percieve that the body part is normal, the symptoms gradually subside. For your daughter, the following therapy concept with a trained professional might be useful:

• not moving the right hand at all
  
• seeing a mirror image of the left hand (brain visualises this as the right hand)
  
• moves the left hand (brain visualises the right hand as moving even though it is not)
  
• graduate the complexity of the left hand movement to challenge the right hand perceptions
  

I have had CRPS for over 15 years now with two periods of horrendous pain.  It is totally manageable if you can find a physio who has had experience with it.  The mirror image is an old method which I found unhelpful.  Desensititsing, ice packs and exercise got me out a wheelchair.  
Tens machines are invaluable and are reasonably priced these days.  They send different pulses around the area of pain and the brain becomes confused by the mixed signals, ultimately stopping the pain.  When it flares up again during periods of stress or when I've overdone exercise, the Tens machine used all day stops it completely and there is no sign of it the next day now.  When first using it, as with exercise, do very little to begin with.  
My local pain clinic was worse than useless.  The Royal North Shore Hospital in Sydney has the best clinic and could probably point you in the right direction.  There is also an excellent book called “Manage Your Pain” which I refer to when I need a hand to hold.  Curently Pilates keeps me afloat though not all Pilates instructors are as sensitive and able to get round the difficulties.  Large classes are a waste of time, it has to be one on one.

Good luck. 
 
 

Thank you to the CRPS sufferers who have shared their personal experience with this condition.

Over a number of years, I have successfully treated this condition without the use of a TENS machine so the I don't consider it fundamental to the treatment process, rather adjunctive.  As has been mentioned, there are a number of therapeutic interventions that can be utiliised - mirror box therapy is just one.  Others include graded activity, densensitisation, cognitive restructuring, and relaxation techniques and aquatic therapy as non invasive treatments.  Further, there are sugical and pharmocological interventions. The RSD

The best approach is one that is based on individual assessment of your specific situation and will use a combination of these so it is ideal to find a therapist (occupational therapist, physiotherapist, or other) who has experience is these methodologies as well as experience in this condition.  Because occupational therapists are trained in physical and cognitive therapies, they can offer a broad approach to this condition.   

No one treatment method that suits all; it is a very individual approach and my suggestion is, as has been mentioned, you find a therapist with experience in successfully treating this condition.

I hope your daughter finds relief.

In spite of having had crps for many years now, with two serious setbacks, I  now lead a completely normal life.  It has been a very long, hard journey but there is so much research now particularly with the neuroplasticity of the brain that there is hope for a permanent pain free solution.  Check out "The Brain's Way of Healing" by Norman Doidge which will give some examples of what is being discovered about the brain and ways around various problems such as pain. Being told to practice positive thinking simply made me feel more depressed and inadequate as it is pretty impossible to feel positive when in screaming pain.  However, acceptance of the situation and working your way out of it is empowering.  Remedial Pilates on machines where there are no more than 3 in a class is one aspect I would highly recommend provided you find someone with top grade qualifications from one of the two (?) Pilates schools in Aus.  The Pilates method requires very little apparent effort to begin with but gradually builds up the strength and flexibility of the whole body with the additional benefit of the brain becoming a little less agitated each time.  There will be small setbacks from time to time but exercise is absolutely essential.  A good physio with a background in Pilates is also very helpful particularly if he/she can work in conjunction with your Pilates instructor.  Getting out is also vital to get as much distraction as possible.  I began bushwalking on rough tracks beginning with 2 minutes at first and built it up over a VERY long period, increasing in weeny increments ONLY when I felt good so as not to set off the pain again. For some reason I found the rough surface of the bush worked better than a flat footpath or shopping centre.  This now makes sense after reading Norman Doidge's book.  You have to creep up on this nasty condition so it isn't aware of being beaten!  Friends collected me and I played recorder in a group or simply had lunch.  Pain was definitely less during these activities so distraction is good to keep the mood up naturally without having to try to think "positively" when you are feeling anything but positive.