CRPS Awareness Day 12- My Burning Nights Complex Pain Story
By Guest Blogger Victoria Abbott-Fleming
I grew up in the North West, UK as an only child and went through early life enjoying school, sports and music. At primary school I made Head Girl and became a Head of House and School Prefect at Secondary School. My childhood was a very happy one!
I became the first in my family to go to university and I eventually qualified as a Barrister and was Called to the Bar in 2002. I loved it but knew it was a tough profession to get in especially for women.
After University I got a job as Head of the Law Department at a college. I loved it! Passing over my legal knowledge that I had learnt over the time gave me a real buzz! Soon after starting lecturing in 2003, aged just 24 years I suffered what seemed a simple accident at work. However this very quickly turned complex.
I suffered no broken bones but suffered major soft tissue damage and possible nerve damage. 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.’
Eventually after 7 months and seeing huge number of different doctors and specialists, I was diagnosed with Complex Regional Pain Syndrome (CRPS) in my right leg. I had never heard of it and neither had my husband. I was numb with fear and worry; I just didn’t know what my future held for me.
The condition caused me to experience extreme burning pain, allodynia, temperature and wild colour changes. I had other typical signs and symptoms such as shiny skin, loss of hair, terrible brittle nails and major swelling which unfortunately resulted in me having painful ulcers and eventually total skin breakdown.
I started to fall into a deep dark hole of depression and even though I have a fabulous husband and my dog they couldn’t bring me out of it. I began seeing a counsellor, who did her best, but I couldn’t see any way ahead of me and yes I did consider suicide. I found it difficult to accept and contemplate how a minor fall down a flight of stairs at work could lead to something so life changing.
I tried the majority of treatments available at that time but after almost 3 years 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 including an excellent legal career. I didn’t know what I was going to do. It took me a long time to learn to accept my condition and amputation but when I did I felt that I had really achieved something and was determined that this condition wasn’t going to beat me.
However something else very positive did happen to me before my amputation took place in 2006 and that was my long term partner and I finally got married. We had been together since 1999 and with everything that had gone on, the last thing on our mind was marriage. But when I knew that I was going to become an amputee, I took the decision that I wanted to marry with 2 legs and not in a wheelchair. So we travelled to Las Vegas, USA and got married in a beautiful location over Lake Las Vegas and no, we didn’t have Elvis at our wedding!! It was a fabulous ceremony and for just one moment I didn’t think about the CRPS or the impending amputation. For just one moment the words “in sickness and in health” meant so much to both my husband and I.
Following my 1st amputation, I tried to rehabilitate onto prosthetics but it turned out impossible due to the CRPS remaining in my residual stump. I also had terrible phantom limb pain which was and still is like having the CRPS still in the lower part of my leg. I also suffered with several pneumonias and eventually contracted Swine Flu while on holiday in New York in January 2014. Was anything going to go right for me? I kept thinking that world was set against me.
I was put into an induced coma and my husband was told that I had less than 20% chance of survival and if I did survive I may have some brain damage. I did survive which was a sort of miracle but unfortunately after I returned to the UK I started with familiar symptoms in my left leg. Yes, the CRPS had spread to my left leg. I just couldn’t believe it. I kept thinking, why me? Why did this all have to happen to me? After only 9 months I needed my remaining leg amputated above the knee, leaving me totally confined to a wheelchair and unable to use prosthetics due to the severe pain and hypersensitivity from the CRPS. I was just 35.
It was during 2014 that I decided that no-one should go through what my husband and I had been through without any form of support in the UK. I wanted to help all those affected by this devastating and life-changing condition and more importantly to raise awareness of it. So I set up a UK charity, Burning Nights CRPS Support and we are dedicated to supporting everyone affected by CRPS as well as raising awareness amongst the healthcare, legal professionals and of course the public.
In terms of where I am now apart from the charity, I still live with a lot of excruciating pain as well as having other CRPS signs and symptoms such as tremors, temperature and colour changes as well as hair and nail problems. I have to take things slowly a lot of the time and have to factor in rest time and time for my husband. There are days when I don’t want to do anything or can’t do anything because of the pain or tremors but I enjoy raising awareness and reaching out with the knowledge I have gained to members of the public, legal and healthcare professionals and students. I don’t know what the future holds for me, so I take this one day or week at a time. But I know that I couldn’t do this without my caring and supportive husband.