Hi AzDi,

Yep, I agree with what everyone is saying. It's not you, it's them. Saying you have a touch of CRPS is like saying you have a touch of the plague... Such people have to be ignored in terms of what they think they know about what you're dealing with. Their knowledge of CRPS is about the same as my knowledge of the maching tolerances of the pistons in a Harrier Jump Jet engine.

My own experience is that the CRPS symptoms at the original site were very different to those at the sites of spread. I had all the colour madness, lots of swelling, huge temperature differences, crazy pains, shiny skin, weird hair, sensitivity, the lot. My next side of spread (foot) was similar, but hardly any swelling. When it spread up my leg, the main symptom was pain and sensitivity, and that odd sensation thing of either icy bones or hot skin. When it started in my arm, I again had little swelling or colour changes, mainly pain, aching, stabby pains, hot sensitivity, cold ice bones, weakness...

It's different in each site, and has changed in each site with time. What is left behind as the mainstay all the time is the pain (we all know about those), and the skin sensitivity, which ranges from hardly there to OMG-don't-come-near-me. The temperatures swing all the time from cold to hot and back again, often different in different areas, and never really predictable.

I've read a lot of research papers, and these things are known and the evidence and discussion is out there. Problem is that most medics haven't the time (or inclination) to read about it in any depth. Some are also still using sources that are hugely outdated. All you can do is the good old print run thing, and hand over some up-to-date info and ask if they could read it. And of course stick to your guns if they try to shout you down or give you inappropriate (or downright dangerous) treatment...it's so hard. I'm sure it wasn't meant to be this hard .

Your Social Security 'expert'....well....words fail me....almost . He clearly knows absolutely nothing about CRPS or he wouldn't suggest doing another surgery on the original CRPS site. Yeah, cause that's going to make it all better... I know some surgery is occasionally necessary, but the whole scenario in that appointment taken as a whole would be laughable if it wasn't about you AzDi, and wasn't about a distressing, painful and intolerable condition that these muppets get to make a judgement on. I mean wtf.

Sorry. Deep breath. I hope you are having a better day today, and I hope things get sorted for you soon. You deserve better than this, and you'll get there, but it takes time, like everything we have to fight for. Never give up, because we're right behind you

Take care of yourself, and don't let them make you doubt yourself AzDi.

Bram.