Erin, I am so sorry you are in such pain. It is boggling my mind. There has to be something they can do for you. Have you discussed this with an internist? What about a nerve biopsy? I know, invasive and painful.

It's so odd. Is the pain all over the place? Like how the flu or a high fever feels? If you press on your muscles, do they hurt? I have to wonder what the mechanism is if Fentanyl isn't even working. Has anyone tried Lidocaine patches to test to see if it is nerve-related? It's not a 100% test but may give your neuro a clue. You can't overuse them with MG, it would be dangerous. But maybe a "test" on one area to see. Ask your neuro about that.

Someone should be able to figure this out for you. Pain needs to be taken care of. It is EXHAUSTING. I know people who live with chronic pain and they are amazing, in my view. It's so very hard.

I wish I could do more. I wondered why you were a bit quiet lately. Does anything help? Again, I'm very sorry you're hurting.

Annie