CRPS and why I set up Burning Nights CRPS Support
I qualified as a non-practising barrister and was Called to the Bar in 2002. Soon after starting lecturing, I suffered a seemingly simple accident at work in November 2003 where I slipped down about 30 concrete stairs. I suffered no broken bones only major soft tissue damage and possible nerve damage in my right leg. But my main problems had still not been diagnosed by the multitude of doctors I had started to see, where I was told that ‘it was in my head’ or the ‘pain can’t be that bad.’ However things very quickly turned complex.
My main problems were severe, constant burning and stabbing pain in my leg, colour changes, it felt as if I was being stabbed through the leg like thousands of ice picks, major swelling, my leg hair grew and then it started to fall out and not grow, my hair loss wasn’t only on my leg but also on my head, when things brushed against my leg it felt like sandpaper, I had hypersensitivity, the stiffness of my ankle made it very hard for me to bend to enable me to walk properly, I couldn’t sleep due to the constant burning pain and eventually I became very depressed. Why me? I kept asking myself. Eventually after 7 months I was diagnosed with Complex Regional Pain Syndrome (CRPS) in my right leg. I had never heard of it. I had plenty of questions though so I went onto the internet that night and searched for answers, but there were none.
I tried the majority of treatments available including medication, opioids, regional and spinal blocks, physiotherapy, mirror therapy, acupuncture, acupressure, desensitisation, short term epidural, debridement... even Chinese medicine! I just wanted the pain to stop. Eventually I was forced to give up working. After 2½ years of unsuccessful treatments, I began to get ulcers and skin breakdown from the constant swelling and soon after doctors decided that my leg needed to be amputated above the knee. I was just 27 years old and had my whole future ahead of me.
Unfortunately the stump needed revision surgery as I had osteomyelitis (infection of the bone) but it finally healed 18 months later. But the CRPS wasn’t gone. I still had the CRPS but no ulcers. I also had phantom limb pain as well.
That year wasn’t all bad; I got married to my long-term fiancée in Las Vegas which was very emotional but fantastic.
Following my 1st amputation, I suffered with several pneumonias and eventually contracted Swine Flu and 5 types of pneumonia in boy lungs while on holiday in January 2014. I didn't respond to treatment and after 48 hours my husband was told I had just 20% or less of survival and if I did survive I may have some brain damage. I was given a course of ECMO and put into an induced coma for 15 days to help keep me alive. I did survive but was extremely ill. I returned to the UK and not thinking life would get worse, in March 2014 once again diagnosed with CRPS in my only leg.
It was after that appointment my husband and I decided life was precious and short, so we created an awareness and support website for others affected by CRPS, so they would have a forum to chat with others as well as regular blogs and the latest information and research about the condition. I named it Burning Nights CRPS Support because for me the burning pain tends to worsen at night when I begin to relax and calm down. Unfortunately after 9 months I needed my left leg amputated above the knee, leaving me as a bilateral above knee amputee, confined to a wheelchair and unable to use prosthetics. I was just 35 years old. Despite the fact that I still have CRPS in both stumps and phantom limb pain, I feel a little happier I don't have the ulcerating legs that caused me to be so ill all the time.
Now I am the proud Founder and Chair of Burning Nights CRPS Support that is a registered UK charity dedicated to supporting everyone affected by CRPS as well as raising awareness amongst the healthcare, legal professionals and the public. So even though I live in severe agonising pain every day of my life, I have turned a 13½ year nightmare into a positive. Don’t let anyone tell you that you can’t achieve something because you can!
Story written by Victoria Abbott-Fleming
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