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.
