Welcome! I know it says it usually starts in a limb but that doesn't mean it can't start elsewhere. Your sensitivity to clothes makes me think it is CRPS/RSD. I would try desensitization therapy ASAP as it has made the difference between wearing clothes and shoes and not for me. I may have missed it in your post but what are they doing to try to treat it now? Most of us wind up on a medication cocktail and I know mine helps. The biggest part that helps me is the butrans patch.