My name is Hannah Moore, I’m 18 years old and live in North Dorset in the UK. I just wanted to thank CRPS UK for allowing me to share my story to spread awareness. So, here’s my CRPS story:
I was a perfectly healthy 16 year-old, I was just starting my final year at school, and I was really sporty. I had a black belt in karate and had competed at a national level. My CRPS story all began in 2012 when I had ingrown toenails that were infected in both of my big toes. In the September I had the left one done because it was worse and all was well, a few weeks later it was back to normal. In the October I went back to have the right one done. I could tell straight away it was different, as the local anaesthetic was injected, I got a searing pain up my leg and throughout my whole body. I was in tears and at the time that was a rare sight. It was always more painful than the one I had done previously and I kept going back and they kept redressing it saying that it wasn’t infected and it will be better soon. But unfortunately, this was just the beginning of my troubles. Really and truly I don’t think I have come to terms with it and I’m not sure I ever will.
When I went back for a review only about a month later, I had x-rays and was told that they were fine and then I was told I had CRPS and that I would be referred on to a pain specialist and to go to a physiotherapist. This was all done privately through health insurance. Though many doctor have recently told me it can’t be CRPS until it has been over 3 months but I’m not sure what is right. So I think it was November when I started seeing the physiotherapists, who did try to understand but weren’t really used to dealing with CRPS patients. They always used to try and grab my foot and manipulate it, which obviously didn’t really help the situation just made me cry and scream. As I learnt to walk slight better, being only able to walk on the outside of my foot, they kept telling me it was working even though I don’t think that’s down to the physiotherapy. Anyway as things carried on, after making progress originally, things just weren’t getting any better but at least they weren’t getting any worse. I saw the pain specialist who also confirmed the diagnosis of CRPS. I was told the best chance of recovery was after having a nerve block, well at 16 if you are told there’s a chance you could be like you were and like all of your friends again of course you’re going to say yes. I went in to have this nerve block and it’s only then they realised how bad it had got, it was almost impossible for them to find a vein in my foot because all of the blood vessels had constricted (gotten smaller). I’m not too sure what happened or went wrong but I felt terrible after really shaky and twitchy, however this is the only memory I have of this event for about 3 days.
After all of this trouble privately we went to the NHS looking for help. I was in my last year at school and needed to be able to concentrate which I really couldn’t because of the pain. I went to my GP looking for an answer, he tried to refer me to several pain centres however many were not interested because I was not 18 and many of the paediatric pain centres weren’t interested because I was over 16. If there was one thing I could change about the NHS that would be it, between the ages of 16-18 there is no real clear definition about who you should be seeing. By this time I had a small ulcer up my leg that was not healing, luckily it was not on the area affected by CRPS so I could cover it with dressings. The only place that would accept my GP’s referral was a paediatrician at my local hospital. When I went to see him, he was not really sure about CRPS at all. The only thing he helped with he managed to figure the reason the ulcer wasn’t healing was because of infection which he managed to cure with antibiotics. I had an MRI to make sure the infection hadn’t spread and it hadn’t which was good news. I was only saw once every 6 months, maybe I saw him 3 times. He sent me to another physiotherapist who I saw several times a week for about 3 months or so. I had acupuncture and mirror therapy as well as just normal exercises to do. She always said I didn’t do the exercises and I didn’t want to get better but that couldn’t be further from the truth! I would always do the exercises because there is nothing I want more than to be able to do anything I wanted. After this she discharged me saying there was nothing else she could do. I wasn’t too bothered at the time because despite the pain I managed to carry on getting 14.5 A*-C grade GCSE’s and getting my place at college to do a Specialised Chef’s Scholarship.
Life carried on, I had a job working as a chef which was tough but it always has and always will be my one passion in life and the love for what I do is what kept me pushing on. I started college in September and it’s such a great opportunity and experience! Even though I could still only walk on the outside of my foot I could still do a good job and get stuff done. Then after a term at college we went up to London to work at 5* hotels which was almost unbelievable, walking in on your first day thinking that this is where you work and you live in the capital. I just couldn’t stop smiling even through all of the early starts and long days.
The doctor I had been seeing referred me to a hospital in London when I moved because it was easier and they agreed to see me despite still only being 17. I went to see them and started trying Gabapentin but didn’t really seem to help. I was also told I should see the specialist pain physiotherapist there. I started seeing her and we were trying to increase movement in my foot, I always tried so hard several times a day, every day but there wasn’t much improvement. She suggested hydrotherapy but since having CRPS I find it hard getting my foot wet, whether that be putting my foot in water or putting the water on my foot I still found it agonising, so we never really got that far. I was also referred to the specialist pain psychologist which I found quite useful. I had two weeks off from work in the August, so I decided to go back home to see my family for that time. I had such a great time but towards the end of my time at home, a small black dot appeared on the top of my foot. Luckily I was due to see my consultant a few days later and I was told if it got worse to call them and go back.
As time went on and I got back to work, this tiny black dot started to collapse inwards upon itself. Obviously I called and went back the next day and they agreed it was an ulcer and to dress it was the best option. Maybe it’s just me, however even though it was a solution to heal it, it just wasn’t possible. Many people don’t understand this saying I don’t want to get better or something but that’s ridiculous of course I do! That’s all I want – to be better, to be me. So we tried so many ways of trying to put the dressing on, anaesthetic creams, Entonox, about 10 types of dressings but it wasn’t possible. Since my CRPS started I have always managed to put my socks and shoes on, of course with a lot of pain but I still managed to do it. Rather unwisely I tried to carry on, but the ulcer just kept getting bigger and bigger and because I couldn’t wash off any of the blood it really wasn’t a pretty sight. Then I could no longer continue to do my job so I was signed off sick, and this was so hard for me to take because it is what I used to keep me going. I went to see various different people and had various tests done to try and find a cause or just anything to help but nothing was really found. I was always told to go to A&E if I felt unwell, with a high temperature, hot or cold sweats, all signs of infection. About a month after the ulcer go really bad I went along to A&E with all of those kind of symptoms. Though they said it’s a good job I went I do really regret it. When I got there everyone was try to touch my foot or clean it or whatever no matter how many times I told them “Please don’t touch my foot I have CRPS!” I really did feel scared because nobody seemed to understand. I was put on IV antibiotics and had to go to the acute assessment unit (AAU). So I hardly slept that’s night typical hospitals but then in the morning there was worse to come. When the morning staff came on I was actually sleeping and they came over and started touching my foot, I was screaming but that didn’t make any difference. I kept saying that no meant no but that didn’t make any difference. Anyway in the afternoon the doctors came and went then I asked when I could go. I was told that the doctors wanted me to stay another night. I’m not afraid to admit I discharged myself that night the only reason they wanted me to stay was to clean my foot. They refused to bring the self-discharge papers until 10pm in the hope I’d stay. But I went home with no antibiotics, but I was seeing my consultant two days later I just had to get away from there.
Things just kept getting worse so a date for surgery was set, 7th October, two days after my 18th birthday. Not exactly ideal but had to be done. The surgery went well I had an epidural for a few days afterwards, my whole foot was cleaned and flaps of skin and a skin graft were used to cover the area of the ulcer. I was discharged about a week later with no further complications. I was told to soak it in water and although I couldn’t do this previously I did manage a few times with great struggle but I couldn’t face it being how bad it was before. About a week later, the graft started to fail, I was so upset. I felt like things had gone in the right direction, maybe I got my hopes up too much, I’m not sure. Once the graft had started to fail, it fell off quick and the gap it left started to open up in a similar way to the one before.
On 11th November I went back to have another operation to try and help heal the hole left by the graft. Again more flaps of skin moved round but on a much bigger scale. Again afterwards I had an epidural, I have to say it was the most pleasant sensation I ever remember. ABSOLUTELY NO PAIN! Though I had to have about 3 epidurals put in because they kept coming out which wasn’t so nice. I also had one tunnelled under my back so it could stay in longer. Though when I woke from this sedation I was in agony, eventually I was settled with ketamine. They placed another normal epidural in, this one was working much better. A few days went past and but then my back got so pain I could hardly move, I had blood test done and it showed signs of infection. So despite getting good pain relief, they decided they just couldn’t risk leaving it in any longer.
My friends visited that evening and gave me some encouragement. Then my pain doctor came and said he had to take it out. My friends left and he did. The pain in my foot came back quite suddenly so I was given various pain killers however my left leg was numb and had pins and needles. I told him and he rushed off to talk to other people, he came back and said I would have to go in an ambulance with blue lights and sirens to another hospital to have an MRI to check I hadn’t got an epidural abscess. I was pretty scared but he stayed at the hospital with me until 11pm when I went to have the scan. Luckily it was good news. No abscess! So I returned to the hospital. Not much really happened for a while I just felt horrendous and was on a PCA of fentanyl and then morphine. I was having ketamine every day for about three weeks. I was bed bound for about 4 weeks, just my iPad and phone to keep me company with occasional visits from my amazing friends and family. One of the most frustrating things was being able to see Winter Wonderland out of the window I was hoping I’d be out in time to go but unfortunately not. Then came the news that part of the wound was opening again. So I had a general anaesthetic to take the stitches out and dress that area. Again I woke up screaming, I find it so embarrassing but it feels like I’m crying before I’m even aware of it. The rest of the wound had healed nicely so it was decided to put a small skin graft over the area in the hope it was heal it quicker and more effectively. I was so nervous of the graft because of what had happened the last time, it was three weeks until college started and I wanted to be there more than anything! I had found all of this had caused me to have depression, PTSD and GAD (generalised anxiety disorder). The thing that scared me the most whilst I was in hospital was all the crash calls, when I became unconscious. When I woke up I was terrified, sometimes I just have flashbacks of that happening, I hate it! My friends said they had noticed a difference in me but I never really did myself. I had spent 4 ½ weeks inside, in hospital and one day it really hit me that I had to do something about it. So when my friend came to visit, I asked if I could go outside with her. It was so lovely, seeing the Christmas trees and the cold air on my face. I couldn’t stay outside long because I wasn’t attached to the PCA delivering pain relief but it was long enough for me to realise I had to get back to college. We went to Starbucks and got a hot chocolate to take back to my room. We had a good girly chat; that day made me so happy. Before I had been reluctant to do any physiotherapy but on the Monday after going outside I made myself do it through the pain. I walked for the first time in 5 weeks. It was so incredibly painful but I did it. The day after I had my first shower in 5 weeks. I really felt like I was making progress and I was so determined to go home for Christmas. I was weaned off the ketamine and then on the Thursday, I was allowed to go home! I was discharged taking about 30 -40 meds a day and the graft wasn’t quite healed so I had to be so careful but I was just over the moon, I remember singing Christmas songs all the way home… I moved back from London and we had Christmas at home. Every day I was trying to do a bit more and I was getting stronger and stronger.
Then, finally came the big day, moving to Bournemouth to go back to college. This was such a big thing, I felt like I was back living with all my best friends and doing the thing we all love. I didn’t do all the lessons at first but I gradually built up to doing all the lessons the same as everyone else. I wore open shoes to allow the graft to be open to the air as much as I could, my feet would get so swollen and go black, blue, purple and red. It was worth all the pain just to be doing the thing I love. The graft had fully healed and everybody was amazed at how good it looked including me.
However, a few weeks before half term, I noticed another black dot appear on my foot. It looked identical to the one before. I was so devastated I felt like my whole world was falling apart, I cried about it for a long time because I just couldn’t face going through it all again. At the time I was living with friends and they were so supportive and reassuring when it all got too much. I went back to see my consultant at first I never mentioned it as it was just a check-up, but eventually I couldn’t hide it anymore I was due to go back to working full time in about 6 weeks and I knew I couldn’t do it like this so I just started crying (I never used to cry, seem to all the time now). I said about the black dot and he saw, the plastic surgeons again suggested dressing which I tried again as part of the skin that was operated on previously had no sensation, but still no joy. I kept going to college, everyday my foot getting worse but I couldn’t face not doing what I love again. I had to eventually, it was decided after half term I would go and live at home for the year. The college have been amazing with me and said that I can delay my course a year and go back in January 2016 with the people in the year below, I’m just hoping for some progress by then. I kept going up to London every week to see various people. My pain consultant sent me to see a dermatologist who tried to suggest I had been ‘picking’ or ‘cutting’ pieces out of my foot. I have never self-harmed, I was really disgusted when she said this. I went there looking for help for something that wasn’t my fault and I get accused of that. Anyway all off the people that have seen me had a meeting and decided the best way forward was to place my CRPS foot in a cast and try and manage it that way. This means that I have to go up to the hospital every week to have it changed under general anaesthetic. That pretty much bring us up to the present day. I have had my foot in plaster for 16 weeks and 16 procedures on my foot. So the good news the ulcer that appeared in February has now healed. The bad news I have another wound on my foot which the surgeon tried to tell me I caused?! My foot was in a closed cast up to my knee… I really don’t understand why I have been accused of self-harming. I know I don’t but I don’t understand why I have to try and prove my innocence to everyone else. I just want a way of stopping the ulcers and the additional pain they bring as well as relieving some of my CRPS symptoms.
It has been hard to write my CRPS story, brings back many tears but in a way slightly therapeutic. I hope that by writing my story it will help to encourage others to tell their story and spread the word about CRPS and help raise awareness of the condition. I also hope it will help comfort those who have had similar experiences with CRPS and let them know they are not alone.
Thanks for reading my story!