An informal international network of CRPS patients

Elle and the Auto Gnome

When we find ourselves diagnosed with something we’ve never heard of and our doctor seems to be unable to clearly explain what on earth it is, what do we do? Many of us turn to the internet, but health information online is of variable quality, and even more so when research bounds onwards in new understandings whilst many websites are not updated with this new information.

So what do we do then? Who out there has heard of the condition and has some clue about symptoms, prognosis, the whys and wherefores? How many of us actually get to see a specialist in CRPS? I was diagnosed by a very good limb-reconstruction specialist, and I’ve seen some general pain management teams, but never a CRPS specialist.

Another reason we may look online is for someone, anyone, who understands what we are going through, who can reassure us that we’re okay, that’s…

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