Elation and desperation

This blog is about how my CRPS has been from 2009 up and till the present day.

It was the summer of 2009 and I was on a family holiday, we had been out for the day at a theme park. I love rides and rollercoaster’s, however they do cause a lot of pain but I can’t stop everything I enjoy. My pain was a lot worse due to been on the rides, we arrived back to where we were staying and all of a sudden I felt no pain at all, I shouted my family and they came running through and wondered what was wrong I told them I was in no pain, they looked at me and couldn’t believe what I was saying. I tried to touch my leg where my CRPS was, and I could touch it without hurting. It was amazing I just couldn’t believe what was happening. I went to bed and slept the whole night which was great and when I woke I didn’t know if I had dreamt my pain going completely or not, but I hadn’t. I just felt like shouting from the roof tops that I had no pain. The doctors had told me that it could go between the ages of 16 and 19 and I was 16 and it had gone it felt incredible. A week later we came back from holiday and I was still pain free, I still relied on my wheelchair because my legs were not strong enough to walk all the time.

I went to physio and tried to get movement back because I wanted to get going again, it was hard because of my legs been tired they would just give way from under me without warning and I would fall straight to the floor.  However I kept trying to do more and more walking.

3 weeks after the pain going, I started a child care course, it’s what I always wanted to do and was looking forward to learning new things and going out and getting experience of working with children. I made some good friends at college, although I found it hard for people to except me as a person and not just see the wheelchair.

It was all going well I had bought skinny jeans and boots that I could now wear because I could touch my leg. Suddenly it all started to change again. About 5 weeks after it going I started getting an aching pain in my leg, after a few days of having this feeling, all of a sudden I felt the burning pain again and it hurt to touch my leg. I realised that the pain was coming back. I was really emotional and I felt devastated and heartbroken. However it wasn’t straight forward the pain kept coming and going for about 4 more weeks. I felt like it was messing with my head, a few hours I would have pain and it be unbearable to touch and then a few hours later I would have no pain and could touch it, until it came back and didn’t go again. I could not understand how it could go for 9 weeks and then come back, I just felt so upset and confused by it all.

A few weeks after it coming back, 1 scar on my leg opened up, it was a scar from an operation that I had when I was 3 and it just opened up. I carried on at college and my tutors were really upstanding and helped me with coping with it coming back and supported me while I was at college. My family was amazing and supportive and it was a shock for them as well.

A few months went by and it was now 2010 and I still had the open sore, it had been getting infected and was getting bigger instead of getting smaller. I started trying dressings, which was difficult because everything I tried just caused intense pain. I then started to feel another scar opening up, it was horrible because no matter how much I wanted to, there was nothing I could do to stop it.

I now had two open sores, things seemed to be getting harder to cope with, my sores would bleed so much that I had to change the dressings at college and because of how much pain it causes it would affect my concentration. I didn’t want to let it stop me so I just got on with it and was still getting good grades on my assignments. Half of my course involved going on placements in a school, I enjoyed working with the children and learning new things, however I did find it difficult getting around in my wheelchair.

It was April of 2010 and my sores still had not healed, they had become infected and anything I tried to heal them just would not work. I was only getting 2 hours sleep per night and was in so much pain, but I was no longer getting relief from the pain because my painkillers stopped working due to the pain over powering them. I still went to college because I didn’t want it to control me, most days I don’t think I should have done but I was so determined to not let it win. I then was advised by my tutor to stop going to my placement because they could see I was starting to struggle with it.

Then it came round to May and I had taken some time off college and things took another turn for the worse. I went to get a drink and the next thing all I can remember is waking up on the floor, all confused and quite scared because I didn’t know what was happening. I rang my mum and she came rushing home from work and we thought that maybe I had fainted. The next day I went to the doctors and they explained that I had either fainted or had a fit, the doctor told my mum to watch if it happens again to determine whether I am fitting or fainting. It then happened again once I got home and my mum saw me and she thought I fainting and not fitting.  A couple of weeks later and I was still having fainting attacks, I was referred to have tests done to make sure there was nothing else causing this to happen. I had a 24 hour ECG, an echocardiogram scan and MRI. The results all came back ok and the fainting was put down to being caused my pain and severe lack of sleep because I was now only getting 1 hour sleep.

I was advised by college to stop the course I was doing because they felt that I was not well enough to complete it, I didn’t want to do this because I felt like I had failed if I did but I had to face realisation and put my health first. Although I did finish my first year of assignments at home and passed them all, and I got a C grade for my first year and I can continue the course when I am ready.

It was 2011 and I was still fainting and still had two open sores on my leg. I had been transferred to the pain team at a different hospital because I was previously at the children’s hospital. When I saw the pain team they discussed possible treatments and an operation called spinal chord stimulation was mentioned but the consultant wanted to discuss this with other colleagues because of my complex case.  

I was referred to a plastic surgeon to see about maybe having a skin graft on my leg to heal the sores. The plastic surgeon didn’t know if this was an option because of the CRPS and the sensitivity of it and whether I could cope with this.  A skin graft was ruled out as an option and so was something called skin culture. In September it was decided to try putting a viscopaste dressing on my leg and then putting it into plaster cast so that my leg was immobilised. This was painful beyond words, because of the weight of it on my CRPS and especially the removal of it once a week. However after  one week of having it on the front sore on my leg had healed over ever so slightly. I continued with this for a further 7 weeks but it didn’t seem to be healing the other sore on my leg. It was decided to stop this treatment. The sore that had healed was still healed when the plaster cast was removed, however after two days of coming out of the plaster cast this sore re-opened.

I went back to see the pain team and they re-discussed the spinal chord stimulation treatment, but explained that this would not be an option while I have open sores, due to the risk of infection. The spinal chord stimulation is a wire being placed up my spine, another wire brought round from my spine to my tummy and an implant placed just under the skin.  This is then turned on and controlled by me with a remote control.  If it works and there is always a possibility it won’t, it could possibly take up to fifty per cent of my pain away but could leave a tingling sensation, similar to pins and needles.

I am now currently seeing the dermatologist to try and get my sores healed so that I can have this procedure I am there most weeks to have the dressings changed. I have now had the sores for over 2 and a half years and hope that they will heal soon, so that I can hopefully get some pain relief with the spinal stimulation.

It hasn’t been easy to go through all this but I hold out hope, that one day I will be in less pain and will be able to for fill my ambitions and dreams. The main people that help me through every day are my mum and her partner and my brother, they are always there for me and just help me so much, I cannot thank them enough for what they have and do for me.