DeAnn We are unfortunately, in a situation where a number of the medical support teams have not come across or have any understanding of cpsp.
In the UK, a survey of the pain clinics, teams who should have visibility, their understanding was woeful.
The people we might talk to, expecting them to provide solutions for us, as they always have, can be out of their depth.
On the net, there are details about what it is, when it arises, some of the symptoms. That aspect seems fine.
There is nothing at all on what it is like after 12 months, 2 years. What is it like in real terms rather than theory. What percentage have it in mild form or severe. What does severe mean …..
Initially I thought, no info about it medium or long term. Does that mean no one survives beyond X months ? Clearly they do.
So if that information is not there, how do we expect the medical community to provide solutions? SA didn’t want to know. Who is going to promote the understanding of it ? No one it seems.
So itching, partial or more widespread numbness, twisting, pulling. You might as well be speaking a foreign language
