Just to add to my initial post, the neurologist who diagnosed and treated me at the hospital recommended no more flue shots and to not get the second dose of shingrix.

I’ve seen multiple places to record the reaction, which I found confusing. where do people recommend that I do this?

Also, do people recommend going through the vaccine fund petition process? What kind of documentation is needed and what does the process involve? I’m still three weeks since onset, so I’m in no hurry to throw myself into anything new. I’ve got enough to deal with with my rehab, navigating HMO and hospital bureaucracies, etc.

Thanks @Jim-LA. I have no doubt that the nerves are a deep cause, since nerve damage is what GBS is all about. But treatments that focus on nerve-based pain, such as gabapentin, have no effect. The only thing that seems to help is Baclofen, which is not mentioned in many recent threads. Maybe more people get nerve pain than the leg muscle “freak-out fest” (my term) that I am experiencing. Apparently it’s not easy to figure out the best dosage for Baclofen, since everyone is different. It has a half-life of about 5 and a half hours, which matches my experience exactly. Baclofen also has the added advantage (for me) of causing drowsiness, although that could be a potential problem if you take it too late in the morning and have a demanding morning therapy schedule. I had a sit-down with my rehab doctor today, and we agreed on increasing the initial dosage and two optional supplementary doses overnight. I am also considering moving from the bed to a lounger to see whether that helps.

Apologies for being a bit long-winded. Thanks for your suggestions and for listening.