--even pain specialists, would have heard of thalamic or central pain syndromes. That is because most of them are trained in relieving pain caused by neuromuscular or other mechanical problems are are not as familiar with the peculiar dysesthetic pain caused by damage to nerves themselves.
You should at least go to the doctors armed with info--and you can start at
www.centralpain.org, which is a very comprehensive site that explains this condition and has links to a lot of the medical literature about it.