·
This Chronic Pain disease is believed
to be the result of dysfunction in the central or peripheral nervous systems.
·
CRPS is a rare disease but can be very
disabling.
·
Often
it affects the extremities, hands, arms, legs or feet.
·
CRPS can be caused by an injury or
surgery.
·
Treatments to help control it may
include medication, nerve blocks, physiotherapy, Spinal cord stimulation or Intrathecal drug pumps.
I had never
heard of CRPS but within weeks of having it, I knew everything I needed to know
about it. I couldn’t believe how one part of my body could hurt so much all the
time, and how the slightest touch intensifies the pain. I feel pain 24/7, 365
days a year. When I was diagnosed the mixture of medication I was on seem to
help and seemed to keep my pain at a continuous level, but was still in a lot
of pain.
When I was
diagnosed the doctors told me that because I was a child there was a chance it
could go when I would stop growing between the ages of 16 and 19, but this wasn’t
guaranteed.
I had to
find ways to stop things touching my leg due to the hyper sensitivity. When
inside I roll my trouser leg upto my knee and I can only ware boot-cut or
flared jeans because they flare out in the right place so that I can adjust them
when I go outside so that it isn’t touching my leg. To keep the bed covers off
my leg, I have three cushion rolls placed in my bed. I seem to have developed
quick reactions to getting my leg out the way if anything/anyone comes to close
to my leg.
I went to
school every day and tried to just get on with day to day life the best I
could. Some days the pain was worse but I still went to school and did the best
that I could. I did physiotherapy everyday to try and keep my legs moving and
to not let my muscles get to weak, but I did use a wheelchair most of my school
days to help me get around.
Things that
make my pain worse are:
·
Vibrations
(from music, in the cinema etc.)
·
Touching
it
·
Cold
weather
·
Stress
·
Creams
on it
· Walking
The family that I Iived with when I was diagnosed I found
really supported me and helped me to understand what was happening and took me
to see doctors when I needed to and to get the help I needed. However I did
find that some people thought it was all in my head because they had never heard
of it and couldn’t understand it and because you can’t always physically see
it, this made me feel like I was going crazy because I knew it wasn’t and it
was hard to hear people thinking that but this disease is NOT psychological.
Most days I would wake up and I would hope that it had all
been a bad dream and that it wasn’t really happening to me. I couldn’t believe
how much my life had changed since I got CRPS. I was getting less sleep (about
4-5hours sleep a night), I wasn’t able to walk as much, and found it hard to
concentrate at school and on activities I enjoyed. I also felt like my
independence and confidence had been taken away from me because I found it hard
to walk and felt like the pain had taken part of me away.
I always try to stay positive and put on a brave face because
I feel like no matter how much it hurts and how I feel inside, if I look sad
and moan about it, it won’t make me feel any better or make my leg any better, so
I just try to get on with it and take each day as it comes.
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