Have you ever heard of Complex Regional Pain Syndrome (CRPS)? Probably not. It’s an all too often misunderstood medical condition that leaves those with CRPS in immense pain. The condition, at its most extreme, can result in the surgical removal of limbs and not least countless days, weeks and years of pain and medical supervision. Most frustratingly, for those living with CRPS this life-changing condition does not (yet) attract enough public, government and medical awareness. But one lady is hoping to change that – Victoria Abbott-Fleming.

A truly remarkable, courageous and accomplished woman, Victoria, aged 36, has written her own account of living with Complex Regional Pain Syndrome in her book Burning Nights and has established a support organisation and website with the same name. Victoria developed CRPS at 23 (resulting in an above knee amputation at only 27). Despite the life-changing impact of CRPS, she is one determined and passionate lady who is one a mission to spread the word about CRPS – setting up Burning Nights to help, support and inform sufferers and their loved ones. Please take a look at the website here: www.chronicpaincrps.com.

Her book, Burning Nights, not only tells her account of how her own CRPS developed and impacted her, but offers hope and insight to other sufferers. Victoria’s experience with CRPS is both illuminating and shocking – she has now had both her lower leg limbs amputated such is the extreme form of CRPS she lives with.

Here, in her own words, is Victoria’s story – from being a high-flying barrister whose career was cut short by CRPS, in to a champion for fellow sufferers. With the love and support of her husband, Victoria found within herself the courage to transcend this often devastating condition and live her life with dignity and hope. What amazing determination – Victoria is truly a woman who Shines!

Burning Nights – My Life living with Complex Regional Pain Syndrome – Victoria Abbott-Fleming

I grew up in the 1980s as an only child, my father an engineer and my mother a Head-Teacher at a special needs school. I went through early life enjoying school, sports and music, in fact delving into anything I thought I would enjoy! At primary school I was made Head Girl and took my role very seriously. My evenings were filled with school work, band practice or badminton classes and then weekends after school work was finished I went bike riding with my aunt and uncle or playing tennis at the local park with them. My childhood was a happy one.

I gained 9 GCSE’s then 4 A-Levels and became the first in my family to go to university where I studied a joint honours degree of Law and Spanish. Afterwards I went onto qualify as a barrister in 2002. I loved it but also knew it was a tough profession to get in especially for women, even though there were many more women in the job now; there was still very much a sense of being a man’s job.

While at University I fell in love with a handsome Army man, who on my 21st birthday in front of friends and family surprised me by getting down on 1 knee and romantically proposed! We made plans to marry when the time was right. But our lives were about to take a very different turn.

After University I got a job as a Head of Law at a Further Education College. I loved it! Passing over my legal knowledge that I had learnt over the time to youngsters at AS/A2 Level gave me a real buzz! The kids loved learning from me and I tried to make it as interesting as possible because teaching 16 year olds the meaning of Mens Rea or Actus Reus can be very challenging!! However I progressed from there and after my term was over I secured another teaching law position at a 6th Form College and it was there where my life changed course. It was November 2003 when I had a seemingly simple accident at work where I slipped down about 30 concrete stairs. 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.

My problems were severe burning, stabbing pain in my right leg, colour changes going from white to purple to black to bright red, stabbing like thousands of ice picks being pushed through bone and skin, massive swelling, hair growth, hair loss, feeling of rough sandpaper when things brushed against my skin, hypersensitivity, sense of burning like my leg was sat in boiling oil then changing like it was freezing in an ice block, the stiffness of my ankle made it very hard for me to bend to enable me to walk properly, lack of sleep because the burning pain would be worse at night, depression and fear of the future and the shiny stretched skin over the leg. I also had injuries to my wrists, shoulders and back.

I thought my fiancée would not want me anymore. I kept thinking ‘He won’t want me anymore. He didn’t marry me to be my carer at 25 years old! Why should he stay with a cripple?’ But I didn’t need to worry, he reassured me time after time that he not only loved me, but wanted to be with me and look after me. I love him so much.

Eventually I was diagnosed seven months later with Complex Regional Pain Syndrome (CRPS). I had never heard of it before. I had questions like how long have I got it for, is there a treatment, or cure… I went onto the internet that night and searched for answers, but there were none. I tried every treatment available at that time; medication including opiates, regional and spinal blocks, physiotherapy, mirror therapy, acupuncture, desensitisation, short term epidural, debridement…

After two and a half years of non-stop treatments that didn’t work, I began to get ulcers and skin breakdown from the constant massive swelling, which caused a bout of non-medical maggots. Yes I know, disgusting! Eventually it was decided that due to the extreme state of open ulcers that couldn’t be dressed due to hypersensitivity, constant weeping and smell, it was decided my leg needed to be amputated above the knee. The amputation took place on 13th September 2006. I was 27.

But 2006 wasn’t all bad, I did manage to get married to my handsome chap in Las Vegas which was very emotional but also fantastic. Finally I knew he loved me and it didn’t matter whether I had 1 or 2 legs or whether I had an illness that caused me to be depressed or angry. Unfortunately the stump needed revision surgery where they cut another 4 inches of bone off as I had osteomyelitis (infection of the bone) making my stump even shorter but it finally healed 18 months later. I thought that was it, the CRPS is gone, but no it wasn’t.

The hypersensitivity, burning, gnawing pain, vast colour changes etc. was still in my stump. I also had extra pain from phantom limb which is like having your foot, which is no longer there, clamped in a vice and squeezed very tight. Why wouldn’t this syndrome give me a break? I began getting bouts of pneumonia so was in and out of hospital like a yo-yo. The problem now was because of the amount of steroids given to me to treat the pneumonias my weight shot up.

In January 2014 I contracted Swine Flu while we were on holiday in New York. I was also diagnosed with five types of pneumonia in both lungs. I didn’t respond to treatment and after 48 hours my husband was told I had just 20% or less of survival. I was given a course of ECMO, where my blood was taken out, cleaned and oxygenated then put back in, similar to dialysis but using your own blood. I was put into an induced coma for 15 days to help keep me alive. I survived and after being brought out of the coma I had a tracheostomy to get me back to the UK. When I returned I found I couldn’t feel my only leg. I was diagnosed with Drop Foot and numbness/paralysis. I couldn’t believe it! My 1 and only piece of independence was gone.

Not thinking life would get worse, in March 2014 I was diagnosed with CRPS in my left leg as I was having the same symptoms again. After that appointment we decided to create an awareness and support website for other CRPS sufferers, so they have a forum to chat, rant or swap tips with others as well as regular blogs, monthly newsletters and up to date information and research about the condition. I named the site Burning Nights because the burning pain most of us feel tends to get worse at night when we begin relaxing and calming down after the day’s events. The website and social media sites finally went live in August.

At the end of November the skin started to break down and ulcerate just like it had done on the right leg. I couldn’t believe it, not again! Within just one week the front and side of my leg had completely opened up with ulcers and the weeping started AGAIN!

On 10 December I was taken into hospital as an emergency and the same surgeon who amputated my right leg 8 years before, was standing before me telling me I needed an above knee amputation because the leg wasn’t viable, otherwise it would kill me through infection or septicaemia. So, 2 days before my 36th birthday and 10 days before Christmas, on 15th December 2014 I had my second above-knee amputation. What a great birthday present that was, spending it in ICU!

That was three months ago and I’ve just been told I can’t have prosthetics so I’m confined permanently in a wheelchair. Even though I still have CRPS in both my stumps and I have phantom limb pain in both, I feel a little happier that I don’t have the weeping, smelling and ulcerating legs that was causing me to be so ill all the time.

Today, despite the chronic pain and the major life changes I have experienced, I remain committed to raising awareness about the CRPS and in supporting others impacted with it. If you or a loved one have CRPS, come and find out more at my website. You are not alone and in time, the condition will be much better understood.
Stay strong.

By Victoria Abbott-Fleming (April 2015)