I have EM, not primary but assumed to be connected to my Peripheral Neuropathy.
I've never been to Mayo. I'm on gabapentin and B12 shots since it was discovered I was deficit.
It has helped but I still have flares. My face, ears and hands are the worst, I have Raynauds too.
I have be careful with showers, my diet.. like caffeine and sugar, wearing closed shoes, being in the sun, general temperature and humidity.
One medicine my neurologist said treats EM is Amitriptyline. Maybe that's been mentioned. I carry a handheld fan with me if I leave the house. Keep popsicles/frozen fruit cup, reusable ice packs and a pitcher of cold water to keep me cool. Always trying to prevent the flair, or at least downgrade it.
Cbd salves have helped with pain.
I feel for you, it's terrible. Anywhere I live there is a window AC permanently parked in my bedroom. Sleeping the worst, my body so finicky. I find a small wrapped ice pack under my neck helps. But I sleep at morgue temperatures so I keep an electric throw at my feet cause I can't wear socks to bed. Then that can wake me up, but it's always a toss up with EM.