I have been dealing with this for over 10 years but was recently diagnosed. I am being treated with zanaflex and diazapam in high doses. The dose must be increased durring flare ups. This is a rare disorder and little is know about it. Baclofen was no help, flexeril, and other benzo's were ineffective as well. I am having appetite issue along with this. I have lost about 50 lbs in the past 6 months. I am not sure if this because of the meds or the disorder. Any advice would be appreicated.