This makes me so angry, as the condition has a name yet Doctors refuse to acknowledge that it exists! Is there anything else that it could possibly be? Since they don't really understand it, they refuse to acknowledge anyone who has it. Could you go private, just for a consultation with a specialist, who could then discuss with you medication/pain treatment/alternative therapy which may help? Once you have the private consulation, you are then in the system, so anything he suggests for you, you can do back on the NHS. I have found specialists, when seen privately, do everything they can in their power to help you. The same person on NHS does the bare minimum.