Hey Suz,
I too am into my 4th year with this evil disorder and it has also spread to my hips. I cannot stand any massaging on my lege because touch is so painful. I am also at my wit's end with doctor's giving me pain meds and I am now looking into herbal remedies. I know a chiorpracter who is also a neuro-herbalist and she is going to try some herbs on me this weekend. One of the herbs that she is going to try is Kratom. I has the same properties as an opiate, but is use to get people off of narcotics while helping with pain. I am very excited about it and I am so hoping that this will work.