The FOUNDER of Burning Nights CRPS Support charity is Victoria Abbott-Fleming. Victoria is also the Chair of trustees for the charity and was recently awarded ‘Inspirational Woman of the Year 2016‘ by Aspire magazine. This is her inspirational story of life living with a poorly understood chronic neuropathic pain condition, Complex Regional Pain Syndrome (CRPS)….
My Story begins when I was born in the late 70’s. I grew up in the North West of England with my mother who was a Special Needs School Headteacher and my father was a research chemical engineer. I am unfortunate not to have any brothers or sisters, but have a wonderful and loving family.
I went through my early life enjoying school, sports and music, in fact delving into anything that 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 any 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.
After gaining good GCSE’s at school, I went on to gain my A-Levels, not the type we have now where you have AS and A2 level, it was a 2 year hard slog to gain those A-levels! You had to retain 2 years’ worth of work in order to gain your grades. I had got the grades that I needed to get into University and so I went to Wales to study Law and Spanish as a joint honours degree. I wanted to become a Barrister. I knew it was a very tough profession to get in especially as a woman, even though there were many more women in the job, there was still very much a sense of being a man’s job.
I loved University and being in a seaside town it was great especially when the weather was nice! I met a wonderful and gorgeous fella whilst there who adored and still adores me.
After the 4 year course (as part of the course the 3rd year was a year abroad in Spain) I continued my studies and completed the Bar Course which is the academic course for training Barristers (not the type that serve you coffee!) with an excellent grade. Deciding then to get some work experience before trying to get a Pupillage, this is the practical training for Barristers. Following finishing the Bar Course, I was Called to the Bar, which was a great honour as only 1% of the population actually do this. I was immensely proud of myself and so were my family and friends.
I then managed to secure a job lecturing in 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 and 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 college.
I had a minor accident at work and after 5 months I got a diagnosis of my problems. My problems were severe burning pain in my lower leg, the colour changes going from white to purple to black to bright red, the stabbing like thousands of ice picks being pushed into the bone and skin, massive swelling of the lower leg, the hair growth then loss of hair, the feeling of rough sandpaper when things brushed against the skin, hypersensitivity, sense of burning like my leg was sat in boiling oil or then changing like it was freezing in an ice block, the stiffness of my ankle that made it very hard for me to bend to enable me to walk properly, the 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 husband would not want me anymore. I kept thinking ‘He won’t want me any more. He didn’t marry me to be my carer at 25 years old! Why should he stay with a cripple?‘ Those thoughts kept ripping through my mind. But I didn’t need to worry, he reassured me time and time again that he not only loved me, but he wanted to be with me and look after me. I love him so much.
All of these things that I have just described to you, you may be saying to yourself, that’s what I’m like or that’s what I feel like. You may feel that the medical profession sometimes don’t believe your symptoms or try and fob you off by saying are you sure it’s not in your head? Or you look well are you sure you’re ill? I’ve encountered all of these things on my journey since the accident. Doctors who believe they can cure you or give you a new treatment again I’ve heard it all! The condition is called COMPLEX REGIONAL PAIN SYNDROME (CRPS for short, it’s easier!)
My first treatment was a regional sympathetic nerve block, which was tried 4 times and didn’t work because my leg was too cold and so the consultant couldn’t find a vein. Then it was DMSO 50% cream (chilli based cream) and Gabapentin with Amitriptyline (which was later changed), and so we went into the realms of trying pretty much most of the treatments out there at the time like spinal blocks, permanent epidural, opiates, pain patches, lidocaine patches, physiotherapy, desensitisation, acupuncture, acupressure, mirror therapy, counselling, psychologists, Spinal Cord Stimulator, Cognitive Behaviour Therapy, EMDR and various different medications including Ketamine which sent me nuts at first but I have it now for flare ups! The list goes on as I am sure most of you reading this will say the same, an endless round of treatments where some give you a little relief for a while but then you go back for more and eventually your body gets used to the medicine and doesn’t have any effect on you whatsoever. For me none of the treatments gave me relief from the excruciating pain I was having.
The problem I had was that my leg split with the swelling and caused massive open ulcers from the knee to the toes. I started using a wheelchair but felt embarrassed when I went out of the house because I felt people were staring at me and talking about me being so young and in a wheelchair and also not seeing anything wrong with me. When my husband and I went into shops the assistants would talk to my husband as if I wasn’t there, it got so annoying and also upsetting. Do you find that?? No matter whether you have CRPS / RSD or any chronic pain and you are in a wheelchair you will have no doubt encountered this.
It was during 2005 that we rescued our best friend and helper, Mr Geronimo Abbott-Fleming… Unfortunately to say, Geronimo has now passed away after having an inoperable and incurable cancerous tumour in his stomach. Geronimo was our dog! He was invaluable over the 11 years he was in our lives and was a major part of the family. He was always there to listen when I was upset, depressed, angry, hurt as well as the good times! Geronimo had to go through huge changes with me in that I had 2 legs when we first rescued him from Manchester Dogs Home, to where I am now as a double above knee amputee confined to a wheelchair. We couldn’t have gone through it all without hi, so thank you Geronimo you were an amazing best friend. Here’s some pictures of Mr G…..
But…… We now have a beautiful 10 month old puppy called Kipper who is all the way from Romania. Unfortunately it was suggested (without specifically saying so!) by some animal shelters that I couldn’t adopt a dog as I was in a wheelchair – crazy huh?! Kipper is so much like Geronimo in his looks that we are sure that he has been sent to us for a reason. Here’s a couple of pictures of our new puppy…
You can see some of the photos of my leg as it changed at the bottom of this page – PLEASE BE ADVISED THAT THE PHOTOS HAVE GRAPHIC CONTENT. I couldn’t have anything touching my leg not only because of the hypersensitivity but also the clothes would stick to my open ulcers and then I would have to try and prise the cloth off my leg. These were the worst moments of my life and I will never ever forget them as long as I live. The reason for the open ulcers was because I couldn’t have the strong binding over them due to the hypersensitivity and burning pain, so they had to be left.
Eventually it was decided amongst the medical professionals who were dealing with me to give me the choice of amputation above the knee, not because of the pain but because of the open ulcers that were beginning to constantly weep and smell. I felt so depressed and upset all the time. It took me 6 months to finally make the very hard decision but I did and my leg above the knee was amputated in 2006. I was 27 years old.
My husband had to go around places with me like that. He never once complained about the smell of the ulcers nor the constant changing of newborn nappies cut to fit into my toe post sandals or the sleeping on the sofa to be close by me when I had to resort to sleeping under the staircase in a hospital bed in our beautiful new home. I can’t think of the words I want to say to him to express my love, thankfulness and….
A prosthetic was bought through a private company after problems with the NHS consultants at the Disablement Services Centre (DSC for short) but after 4 attempts of trying to use it, I gave up. Not because I was weak or unwilling, this was far from the actual truth. The truth was that putting the silicone liner on obviously had to be skin tight and unfortunately the amputation although got rid of the severe ulcers didn’t get rid of the debilitating pain and hypersensitivity. As the liner was being pushed onto my painful stump, by my now husband, it pulled back on the bone and I screamed in pain. My poor husband hated having to do this because he felt he was inflicting pain on me unnecessarily. So I gave up and used my wheelchair wherever I went. I felt like an old lady, I had dark circles under my eyes from lack of sleep and thought the whole world was against me.
I couldn’t work because of the pain, the heavy amount of medication including opiates I was on and then there were the flare ups which were happening on a regular occurrence. The flare ups were like having extremely sharp contractions in my stump. They would come in waves then go for a matter of seconds then the sharp, burning pain would hit me again and this would go on over the day or night. The nights were the worst because I couldn’t sleep due to the pain and the burning sensation I had which appeared to worsen over the night. So I would get up in the morning not ready for the day and so tired not just physically but mentally as well.
Unfortunately the sad story does not end there AGAIN!
Following a serious illness in January 2014 where I nearly died and I had less than 20% chance survival. I am certainly alive but not at all well. My amazing, gorgeous and caring husband and I were travelling to New York for Christmas for a 2 week break. While there we both caught colds and I received antibiotics for it. However this wasn’t the end of it – I contracted Influenza A (Swine Flu) which then went into 5 different strains of pneumonia in both my lungs. My lungs collapsed and I was put into an induced coma to help me to breathe. The doctors at the hospital in New York couldn’t understand why I wasn’t responding to the heavy treatments they were giving me. So they did more checks and tests and found there was insufficient oxygen in my blood so I was given ECMO (Extracorporeal Membrane Oxygenation) which is only ever used if someone has less than 20 % chance of survival. I was on the therapy for 5 days which is the maximum for adults. This began to work – thank goodness! I was awakened out of the induced coma and to get me back to the UK I had a tracheostomy, which puts tubing through a small hole in the windpipe to aid my breathing and to allow me to fly back to England.
Upon return I was put into a small side room in the Intensive Care Unit at FAIRFIELD GENERAL HOSPITAL where during my 11 days there I got another pneumonia infection and had to be sedated again. Owing to the distance my poor husband had to travel we wanted to be moved closer to a hospital near my home, which finally happened and I was moved by emergency ambulance to the Intensive Care Unit at Stepping Hill Hospital. I received fabulous treatment by all the staff there just as I had done in Lenox Hill, New York and Fairfield General Hospital. I finally had my tracheostomy tubing taken out after 6 weeks and eventually made it home after 7 weeks in hospital. If Lenox Hill Hospital had not had an ECMO machine or it was in use then I would not have stood any chance of surviving.
So I THANK all the hospitals involved in my care during those weeks. You all do an amazing job! THANK YOU ALL!!
Upon return to the UK, I found that I had loss of feeling in my one and only foot and leg. Diagnosed with foot drop which is where there’s a weakness in my muscles in my foot, so I am unable to move my ankle, toes or lift it up or down. The doctors all said that the CRPS in my right stump should not go into my left leg; however this was wrong as I have now been diagnosed with the horrible, long term pain condition in my left leg including hypersensitivity in parts that I can feel. As feeling has come back in very limited areas, these are coming back as extremely hypersensitive. I have excruciating burning pain 24 hours a day 7 days a week as if my leg and foot was put in an acid bath, swelling, extreme colour changes, my toe nails have stopped growing, the hair on my head is falling out, my lower leg hair has stopped growing and the temperature on my leg on one day was measured at 18c and it was freezing cold to the touch with a purple and black mottled skin colouring. Another day after a doctor had been prodding and poking and looking at my foot drop, in the afternoon another doctor went to look at it and the leg was so swollen and bright red, she thought I had cellulitis and she wanted me to go to A & E straight away. My leg looked like the colours of the rainbow!
Now the pain specialists say they can’t help me anymore, I am “too complex a case, far too long down the line and too extreme“ and so I was facing the real possibility of an amputation of my one and only leg. I felt like screaming and just bursting into tears at any time, something which most of you reading this who have been diagnosed with CRPS will relate to.
In the middle of December I had to go into hospital fairly suddenly, as the skin on my CRPS left leg had started to break down very rapidly. I went into hospital on Wednesday 10th December 2014 as an emergency patient, as the leg on the skin on my left CRPS leg had irretrievably broken down. What I mean by this is that the skin on the left leg had gone from being extremely dry, withered and cracked due to the massive swelling that was present and had been present for several months to none existent skin and just a wet and soggy mess. As you may recall in one of our blogs, entitled ‘CRPS BREAKING NEWS’ I said that I had seen the surgeon who had 8 years ago amputated my right CRPS leg, and he had said that I was facing an above knee amputation if ulcers started appearing or if I couldn’t take the swelling, pain and lack of use. I thought that I would have 1 last great Christmas and New Year with my 1 leg getting used to the idea of becoming a bilateral above knee amputee before facing the surgery in the New Year. However the CRPS had other plans for me!
By the 8th December only a few days after the start of the skin breakdown, I was using the incontinence squares (inco sheets) on the floor to catch all the drips of goo that were literally running down my leg. Ulcers started appearing and the skin was fast flaking off revealing the soft slough underneath, so we rang the surgeon’s secretary who was really helpful and concerned to let her know that we didn’t think the leg would actually last until the New Year. She managed to speak to the surgeon who suggested we go to the hospital to A & E as there was no way to actually make a planned admission that quickly. After much anger, heated arguments and plenty of tears on Wednesday 10th December 2014 my husband took me into Manchester Royal Infirmary Accident & Emergency.
On Monday 15th December 2014, 2 days before my birthday and 10 days before Christmas Day, I had my 2nd above knee amputation under General Anaesthetic because of the horrid and excruciatingly painful condition Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy. I lost a fair amount of blood during surgery and the surgeon told me that usually amputations are done when there is bad flow of blood to the legs whereas in my case it wasn’t the blood flow that was the problem, it was the CRPS/RSD that had caused irretrievable skin breakdown and ulcers. I was given a few bags of blood to replace all the blood that I had lost during surgery. I spent a further 3 days including my birthday in ICU and HDU and then was sent back to the vascular ward where I remained until coming home on 23rd December 2014.
It was during 2014 when I was told that there was no other treatments to try and my leg needed to be amputated, that I began to think about spreading awareness of this horrific condition out to not only the general public but also to the healthcare professionals, this is why I started Burning Nights CRPS Support. Please visit OUR STORY to find out more about how Burning Nights all began.
Burning Nights CRPS Support gained charitable status on 13 April 2017 and is a fully registered charity with the UK Charities Commission. Our registration number is 1166522, which I am really thrilled about!
I am now a bilateral above knee amputee and am unable to use prosthetics. I attempted to wear prosthetics when my first leg was amputated and tried 4 times in all, but without success. I found that the hypersensitivity and pain from the CRPS prevented me from wearing them. So when I had my 2nd above knee amputation and after visiting the Disablement Services Centre (DSC), it could not be considered as I didn’t have a prosthetic for the 1st leg. I am hoping that 1 day there will be advancements in technology, they may be able to invent robotic legs that could be attached in some other way than a socket or osseointegration for CRPS sufferers – you just never know!
-> I am also available to do talks and seminars not only about my story with CRPS and being a bilateral above knee amputee but also on the topic of Complex Regional Pain Syndrome in terms of in-service CRPS awareness sessions. Please have a look at our seminars and media page to find out more.
I have recently been awarded Aspire Magazine’s Crystal Trophy ‘Inspirational Woman of the Year 2016.’ In December 2016 Burning Nights CRPS Support was also awarded “Charity of the Year 2016 by Aspire Magazine which I am so delighted about as we all have worked very hard over the last 12 months.
I want to THANK my husband especially for staying by my side through the hardest times 2 people can ever go through. He does have his sad days but mainly everyday he tries to help motivate me to do things like this awareness website and my autobiography, otherwise life would have been a very different place for me. THANK YOU MY ANGEL!
I hope everyone who reads my story will gain information and support and also realise you are not on your own with this debilitating condition.
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*GRAPHIC PICTURES WARNING*
The following pictures show the various stages of what my legs went through from the original accident to just prior to amputation. They are graphic in nature because of how the legs deteriorated.
**Please remember that what happened to me is the most aggressive form of CRPS and it does NOT happen to everyone.**
RIGHT CRPS LEG 2003-2006
LEFT CRPS LEG 9 months during 2014
So….. This is the inspirational story of the Burning Nights CRPS Support charity founder, Victoria Abbott-Fleming. If you would like to get in touch with Victoria, please either contact us via the Contact Page, send an email to Victoria or give us a ring on 01663 795055. Why not read how Burning Nights CRPS Support all began? Visit Our Story and find out!
Last Updated: 024/05/2017