Thanks for checking back in. I’m sorry it sounds like it wasn’t as fruitful as you hoped.

I was sort of prepared for that kind or response though; my expectations were low since I’ve had chronic pain for a very long time. I’ve learned not to really expect much concrete help from physicians, particularly neurologists.

I’ve mentioned this before in other chronic pain discussion, but I for the most leverage for fatigue out of appropriate physical therapy (meaning someone who is experienced with chronic pain and fatigue said understands PEM, central sensitization, and appropriate pacing), especially if they’re knowledgeable in pain neuroscience and/or a pain neuroscience program such as Curable (it’s an app, so easier to access and give it as an example).

I’m surprised you’re having a hard time getting an appointment with Asheeta. She had tons of availability for video visits when I checked and it wasn’t hard to schedule—I always schedule at the front desk. But maybe her patient load has grown. If that or calling doesn’t work, you could message Dr. Koralnik’s team in My Chart and say you’re trying to schedule with Asheeta but with no luck. I had to do that once and they had someone call me (because I needed an in person, which needs to be specially scheduled). All her return visits are by video visit.

If it’s helpful to anyone at all, I think I have a notes from my Johns Hopkins PT about paced exercise for chronic fatigue. She treats POTS and Long COVID.

Would love to hear your experience with amantadine if you decide to try it. Thanks again for sharing. It’s tough.