ME peeps... If you accidentally found something that, legally, made you feel wonderfully ME free and energised for an hour or two without major PEM, despite being potentially risky and having possible longer term side effects, would you try it again? - ThreadSky

talmandaniel.bsky.social • 78 days ago

ME peeps...
If you accidentally found something that, legally, made you feel wonderfully ME free and energised for an hour or two without major PEM, despite being potentially risky and having possible longer term side effects, would you try it again?

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andrewgiffordphoto.bsky.social•78 days ago

Hmmmm. Good Q.

For me coffee is like this, it's really helpful on the day I've drank some, but the next day is ten times worse than before as I've not slept and my CNS is shot, then mouth ulcers arrive, then PEM rolls in. Sigh.

talmandaniel.bsky.social•78 days ago

😔

oppklipt.bsky.social•78 days ago

I’m struggling with mouth ulcers too. They suuuuuuck. OralMedic is the bomb, they are the only thing that helps. A bitch to put on (it hurts), but they are gone the next day.

andrewgiffordphoto.bsky.social•78 days ago

Darnit, sounds like OralMedic is discontinued in UK. I use Aciclovir anti virals (stolen from my partner) and Oraldine mouthwash, but it's still a few days to fully heal.

oppklipt.bsky.social•78 days ago

They often struggle to make enough of them (they are almost always sold out), so they are remaking the formula I think and they’ll put it back on the market later.

Aciclovir, are we talking about different ulcers maybe? 🤔 I’m talking about canker sores 🫣

andrewgiffordphoto.bsky.social•78 days ago

I see, thanks! Yes, same - mouth ulcers; Aciclovir seems to help me with these, not sure how and perhaps indirectly but it definitely helps.

oppklipt.bsky.social•78 days ago

Huh, maybe those white ulcers are some kind of virus we haven’t discovered yet? Maybe that same virus is like herpes, always in our bodies causing ulcers from time to time. They still don’t know what those are, so it might be like that. Glad it helps! I once had 22 of those at the same time. Not fun

rebellionista.bsky.social•78 days ago

Probably. I’d need to be making an informed decision on the risks though. like with painkillers, they will hurt my liver. My life will be shorter, but less painful. I’m fine with that.

rebellionista.bsky.social•78 days ago

I have zero idea where that link came from 😳

oppklipt.bsky.social•78 days ago

It’s never a good idea to piss your pants if you’re cold is my experience. It depends on the side effects, are they bad - skip it.

fioname.bsky.social•53 days ago

Yikes, that's a tough one. Guess it depends on whether the minor PEM stayed at that level or escalated into a full-scale crash/permanently reduced baseline. Always a big gamble with this illness!

trixyb.bsky.social•78 days ago

Yes most probably but that said I'm in my 50s so if I where say in my younger years perhaps not .

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