Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)

CRPS Breaking News

2014-11-18
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CRPS BREAKING NEWS!

 

As most of you know CRPS / RSD can spread around the body and if you have read MY STORY then you will know that this dreadful chronic pain condition is in my left leg now.

 

Last week, I visited the brilliant vascular surgeon who I saw for my right leg and who also amputated that leg. The news was NOT good. We had already discussed the possibility of amputation if the left leg but only if it worsened, ulcerated or began smelling badly. Over the last month, the skin on the left CRPS/RSD leg began to die off, flake and looks so dehydrated it just cries out for moisture. But I cannot moisturise that leg because of the hypersensitivity and allodynia caused by the Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy.

 

So.. He has now said that I need an above knee amputation whenever I can’t deal with it any more or indeed if it ulcerates. So, in effect my left CRPS / RSD 1 leg will be having a brilliant last Christmas and New Year (as recommended by a fellow sufferer and supporter of Burning Nights – CRPS Support) and then sometime in the New Year I will be going under the knife yet again. All caused by this horrifying and life-changing condition – Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy CRPS/RSD. The rate of ‘decay’ of this CRPS left leg has gone so quickly and a lot quicker than the right leg had done. In only a matter of a few months my left CRPS Type II leg has gone through all the Stages of the condition whereas it took the right leg almost 2 1/2 years to do the same as the left leg. SEE GALLERY for PICTURES of RIGHT LEG through the different stages. (Please be advised and warned there are Graphic content pictures within the Gallery)

 

I have been through the operation once before and came through it with a few problems afterwards, but this time I have told myself that things have advanced a little more in knowledge in the medical world so things will be better this time! It has really hit me quite hard and also my husband, we have several crying sessions together and also separately. It means that  his care for me will be increased even more than what he does already. I just feel that at 35 years old I don’t want hoists and electric wheelchairs, basically anything that makes me ‘look’ even more disabled than I am already. Possibly it is the fear of the unknown. If anyone else has been through 2 amputations either of upper or lower limbs, I would love to hear from you about how you cope, how your family or partner copes, how life is, things like that. You can contact me through anyone of the Social Media channels or the CONTACT page

 

That’s the BREAKING NEWS today!

LET’S SPREAD AWARENESS of CRPS / RSD! Burning Nights logo

 

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About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!

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