This may sound a bit random, but full body involvement of any symptom usually indicates that it is mediated by central processes- like the brain. With that in mind, have you had any studies of the brain? Either MRI or CT, looking for tumor or disease process in the brain or central nervous system.

My schooling is in neuroscience, and this sounds more like a motor disorder than a pain issue almost. But while doctors are trying to figure this out, and don't want you on meds, there is one great thing that you can start doing for yourself! The best thing that I have ever done for myself (and this is coming from a 25 yr old woman diagnosed at 12 after a gymnastics career who has had 15+ revision surgeries on her spinal cord stim and would do them all again in a heart beat!) is learning to meditate. I went through this class called MBSR- Mindfulness Based Stress Relief, and it was better than anything I had done previously.

It taught me how to learn to relate with the pain and illness and not partition myself off from it, but embrace it, because when I was trying to defeat it I was only trying to defeat a part of myself. The illness is part of us, and by accepting that we get stronger, not the illness or the pain. And meditation is a way to get close to the pain and the stress and the things that are tearing us apart. It's kind of like keeping your friends close but your enemies closer. You need to know it in order to get around it and not let it destroy your life. And meditation just keeps you peaceful and happier. Your emotions affect your pain levels a lot less. (And there's actually a neurological basis for this, which is so cool! You should see fMRI studies of the Dalai Llama!) Anything you can do to calm down the Sympathetic nervous system is a good thing, and meditation does just that! If you want book recommendations or things like that, just ask. But this really is something that you can do to make a difference in how this disorder, or ANY illness affects your life. And you can make it totally your own. If you're christian, you can work it into that. If you're muslim, jewish, buddhist- whatever- you can do it however you want. It has nothing to do with religion.

Hope this helps!
Lynn