Hi all,

This is a very interesting topic. In my 9 year journey I have been lucky enough to have had a Pain Management Doctor who has been looking after people with CRPS for nearly 20 years.
Unfortunatley I didn't get to see him for 18 months after my accident and surgery and by this time my pain had become Sympathetically Independent pain-----My brain had the memory of my pain firmly entrenched in it's depths.
His theory is that early intervention may stop the pain whilst it is still Sympathetically maintained--ie-before the brain remembers it.

I think we can often forget that even though the pain is felt in all parts of our body it is only because our brain is telling us it is still painful.

I do think there is a shortage of really well informed Pain Management teams worldwide and also a shortage of GP'S who are able to make a diagnosis and get treatment underway as quickly as possible. When I hear stories from people that the blocks have not worked and they have not even had "horner's syndrome" then I wonder whether the block has been done properly. I would never have a block that was not done under fluroscopy/image intensifying to check the anaesthetic has reached the target area and for me I would never have a block unless I was sedated to some extent as movement at a critical stage can also impact the result.

Alison, please be hopeful that in a year or two this time of your life will just be an unpleasant memory and you will be enjoying life just as all 12 year olds deserve to be. You do have the very best chance of getting better because of your age and your early diagnosis as long as you have a good and knowledgable Pain Team looking after you.
I have always been told by my team that blocks, mirror imagery and physio within 3 months is optimum but 6-12 months in some people will still respond well. Having said that I do know several people who have been "cured" or have permanent remission after several years of CRPS.
Take care and good luck to all
Tayla