Well, it has come to that point where my musings about living with pain have become a more pressing need to share information on CRPS and chronic pain, not just because I keep coming up against brick walls, but because I am watching others go through the same.
Doctors who are not current in their knowledge of CRPS (“It’s just a label”, “It can’t be treated”, even “What is CRPS?”) and/or their treatment of chronic pain. Patients having to go from doctor to doctor until they (if they are lucky) find one that “fits”. People like myself looking for a UK CRPS support/information group who will support them and get their voices heard.
There are some fantastic CRPS/RSD groups in the US, Australia, Canada and the likes, and yet over here I have only found groups that have closed down. The groups abroad are willing and happy to support us but we have very little in the way of support and advocacy/education here in the UK.
So, after making sure I wasn’t going to be treading on toes and after a positive response to my contact with my MP regarding the UK situation for chronic pain sufferers, I have decided to take Rise Above Pain to the next level and evolve it into a UK group pushing for education on CRPS (and other conditions should I get the feedback/support from others) and fighting for our rights right here in Britain.
I am hoping to find UK sufferers/carers to help me get this off the ground – until then I will keep blogging away and set up a small forum for us to share our thoughts. Perhaps a Facebook page? Let me know what you think. From now on Rise Above Pain will get you heard.