As I explained in my
last blog, I am currently waiting to have the Spinal Cord Stimulation operation,
but due to the open sore on my leg, I have to wait for it to heal. I have still
got one sore that will not heal. I am currently on long term antibiotics and I
have my sore constantly dressed. These dressings are incredibly painful because
of the hypersensitivity caused by the CRPS. I recently had to reduce the amount
of dressings due to them becoming a problem when my leg swells. I have tried so
many dressings and have only found one that is the most bearable and which my
leg does not react to, and this dressing is called Mepilex. I have had this
sore for nearly 3 years and I find it really frustrating that there is a
treatment that may help but I cannot have it until my sore heals. Doctors have explained that dressings they
would normally use on non-healing wounds are not really an option because of
the pain they would cause, also the doctors have mentioned using creams on
non-healing sores, and this too, isn’t possible because my leg reacts to any
creams. It goes bright red and burns really intensely which causes a lot more
pain and results in my whole body tensing up.
I have recently just
been back to the dermatologist and re-questioned him about anything they could
try that they haven’t already. I understand that I am a very complex case but
need to find something to help my sore heel so that I can have the Spinal Cord
Stimulator operation, which I have been waiting for. My dermatologist explained
that we are in a difficult situation with finding something to help, however he
re-suggested having a skin graft. When I first went to the hospital about
getting help to get my sore heeled, it was to see a plastic surgeon, but at the
time he didn’t want to do a skin graft. Now the dermatologist is sending me
back to see the plastic surgeon to see if this could help and whether he would
try it. I am willing to go to see the plastic surgeon but want to know all the
facts and everything about the skin graft before I would go ahead with it.
I started going to
hydrotherapy a few months ago to see if it would help me to get some mobility
back. I found it extremely painful and it caused me a lot more suffering after
the sessions; however I found that I could move more in water than I could on
land. I attended about 7 sessions and my progress started to slip away and it
only seemed to be causing me more pain.t. So I, my mum and my hydro therapist
came to the decision of taking a break from it for now and maybe go again once
I have had the Spinal Cord stimulator, because I think then it will be a great
help and I would gain a lot from it.
Sleep deprivation is
a major problem at the moment, I only manage to get 30 minutes – 1 hour sleep
per night, the rest of the night I spend resting as I do find resting helps me
to feel less tired. Lack of sleep is due to the amount of pain I suffer from
and unfortunately there is no pain relief that helps control my main pain
levels, because I need the stronger medication but this makes me really poorly.
Over the years of
having CRPS, I have found ways to help cope with the pain and how the pain can
make me feel from day to day. I find listening to music extremely helpful;
especially listening to JLS because they are my favourite band. Also I have set
up an awareness page on twitter (@crpsawareness), my aim is to raise more
awareness and to help those that suffer with CRPS too. I find it helpful
because I feel that I am doing something positive out of a negative. By talking
to people who also suffer with CRPS through my awareness page makes me realise
I am not alone with this disease and I find it helpful talking to them. The main thing that helps me keep strong is my
family and friends, they are amazing and are there for me and support me
through everything. My mum is the one who comes to every hospital appointment
with me and changes my dressings on my leg, I realise this can’t be easy for
her or any of my family to go through, it’s not just me going through all this,
it effects my family as well.
