I thought I would look around on Facebook and try to find groups where people with CRPS could get together and help each other through this awful disease. I found quite a few and took my time to read what everyone was going through, what stages of the disease they was at, what type they had.

McGill Pain Scale CRPSI very quickly learned that CRPS not only had type 1 and 2, but it also had the subtype hot or cold, or even both!  And there was 3 stages of the disease (some pages claim there are 4) as I understand it now (2015) they don’t use the stages anymore as things just simply don’t happen in the order that was written. I also learned that this is the most painful disease on this planet, measuring 48/50 on the McGill Pain Scale  See Here.

So, I learned that I have CRPS type 2 Cold, yep you guessed it!! The HARDEST type of CRPS to treat!! I don’t do things by halves!!
I also learned that people talked about grieving for their ‘old self’ as that person was gone and would never be back. I had alot of problems doing this… I was sure the CRPS was not going to win!! How little did I know then! :-\

The person I once was is long gone, this me knows nothing but pain, stress, anger, frustration, hurt, depression, horrible suicidal thoughts and visions of extreme self-harming. What happened to me? A total change of personality too.. This isn’t me? Where am I? Will I ever find my way back? The simple answer is no… Never

The CRPS started just below my big toe after the operation, within 2 months it had started to spread across the other toes, within 4 months it had worked up to my ankle, within 8 months the whole left foot was affected, specialists and doctors had not seen it spread that fast and that aggressively! Within 1 year the whole left leg was being strangled by CRPS and had rendered me bedbound. Within 2 years my left elbow and shoulder were affected and my jaw.

I went to hospital at around 1 year and 5 months for an experimental Pomedranate Infusion, this was to help the Osteoblasts and Osteoplasts and would hopefully help me stop having the deep bone pain, sadly it didn’t work, one of the risks of having this infusion was my teeth would become week and possible jaw arthritis… Since I have had the infusion my teeth have been chipping, cracking and falling out. So its not something I would readily recommend to anyone.

So let’s fast forward a little, I am now coming up to year 3 (11 sept) and I have the whole left leg, left elbow and shoulder, jaw, right eye, right ear, right hip and stomach affected… And as I write this tonight I have another area that has been displaying the same traits as CRPS, so I will have to contact my GP who won’t have a clue how to deal with this part of my body.

Life … Life? Is that what it is… This existence is not one I would choose for even my worst enemy. I have to rely on other people for everything, all I can do for now is craft whilst I am physically able to, who knows how long that will last for? But its what is keeping me going, crafting to put a smile on other people’s faces… Even if I only manage to make 1 person a day smile then that’s a huge achievement for a day 🙂


Published in CRPS, Illness / Disability, RSD