My Fight To Get CRPS Type 2 Diagnosed

Right! Where did we get to? Ah yes, after the stitches were out.. Well I went back to the doctor that often that he referred me back to the surgeon that did the operation. And what a nightmare that was.. “I’m sorry that you are in so much pain, but there is nothing I have done wrong, I haven’t damaged anything in your foot to cause this discolouration, temperature change and pain”

Hmmm… so what do I do now? He referred me to a specialist in another town, so we waited for that appointment to come through – 3 months later!! The appointment arrived and we spent a whole day waiting (a very unorganised hospital) to be told at the end of the appointment that I have CRPS,  and his exact words were “You have what is called CRPS Type 2 (Complex Regional Pain Syndrome), go home and read up about it, but don’t read too much into it, as it will probably not affect you in the way it affects others”. Well gee thanks doctor! What a way to get diagnosed! Wish I could remember his name!

So we came home and were horrified by what we were reading… I had to stop reading the stories as my partner was afraid that I would read things and then start thinking I had them too (psychosomatic). So I left all the reading and research to my partner.. whilst I was beyond myself not knowing what to do. I had to give up work, and I had been offered to do a training course to aim towards being a manager. My life was a mess, I had nothing normal anymore, everyday was the same, pain, lack of sleep because of pain, depression because of pain and NO help from anyone!

We asked for a psychiatrist to see me, they told me if the pain went away the depression would go away!! Really? No shit Sherlock! Then they said they couldn’t help me… another brick wall.

During that time the pain was spreading from the op area to the whole of my big toe, then across the other toes.. walking from the bed to the bathroom was becoming a nightmare, my foot was turning itself over into an unnatural position.. which we later learnt was part of the CRPS too :/ Then the hair and skin on my foot started to change, they was ALOT thicker than the other foot, and i learnt very fast that nothing, and i mean nothing could touch my foot! Not even a cat hair, or a fine breeze.. so looking up on the internet again, yep! Thats another side effect of CRPS… oh geez whatever next?

Published in CRPS, Illness / Disability, RSD