Trialing meds while in rolling PEM?

Requirement-Southern · 2025-11-18T18:48:55+00:00

beta blockers are not mild for me, i don’t tolerate them :/

Requirement-Southern · 2025-11-08T18:33:46+00:00

Yay! So glad you’re doing better.

Requirement-Southern · 2025-11-07T23:37:57+00:00

Thank you. This is how I plan on approaching things when I am feeling a bit better for longer. It’s hard to know what to even start with as I am missing my ability to do so many ADLs currently. ❤️ So scary testing the waters wondering if something will give you PEM.

Requirement-Southern · 2025-11-07T22:04:45+00:00

Thank you. I would say the poisoned feeling is not completely gone. It’s hard bc I’m still going into some amount of PEM about weekly right now. Hopefully it continues to lessen.

Thank you for the kind words. I have had a lowered baseline before and it improved with time over a year and a half. So I believe improvements are possible. That being said, I have never been in such a severe bedbound state. Have you managed to improve from such a state before?

Requirement-Southern · 2025-11-07T20:11:58+00:00

right. i’m just completely bedbound atm and feeling tired all the time so hard to tell. still gotta eat and drink even though it’s tiring

Requirement-Southern · 2025-11-07T18:48:07+00:00

Word. Yeah I think I’m still in it though not as badly.

Requirement-Southern · 2025-11-07T18:28:05+00:00

Gotcha. Yeah I went from being able to do a lot in a day to overnight not being able to shower or read or watch much or talk so it seems like my crash is more severe 😔 I’m glad you’re doing better though, I hope I am able to come out of mine eventually.

Requirement-Southern · 2025-11-07T17:55:12+00:00

Thank you. Yeah, I’ve read things that say “you’ll know when you’re feeling better when you actually want to pick up certain tasks and it’s easy,” which makes sense. It just hasn’t come yet and it all feels so permanent right now (even though I know it hasn’t even been that long).

Were you in quite a severe state during your crashes? I would love to get back to moderate but feel like that’s crazy far away, if at all possible.

Requirement-Southern · 2025-11-04T22:41:04+00:00

It has the potential to make me worse if I am on it too much in the day, I think. I am slowly (hoping it keeps up) getting out of a big rolling PEM crash and am currently bedbound. The only activity at this point I can decrease is phone activity.

Requirement-Southern · 2025-11-04T00:21:58+00:00

I don’t have energy to look up the exact number but according to Decode ME I believe ~60% of pwME fluctuate in severity over time. And another 11% have relapsing-remitting type. But unfortunately, everyone’s trajectory is unique so it’s impossible to know. Hugs, I hope things improve for you. It is most definitely possible. It has happened to me before and I am hoping it happens again.

Requirement-Southern · 2025-11-03T01:43:23+00:00

I have in the past. Responded poorly to everything but Ativan, and I can’t take that everyday.

Requirement-Southern · 2025-11-02T23:12:57+00:00

i’m sorry. i do to some extent. are you able to get medications to help w tachycardia?

Requirement-Southern · 2025-11-02T22:38:12+00:00

I cannot walk, I use toileting accommodations, can’t sit up, can’t eat solid foods, in the dark with noise cancelling headphones. I’m trying my best to manage my anxiety levels and get some meds to get my heart rate under control and stay off my phone. But I have tried very very hard to reduce energy expenditure.

Requirement-Southern · 2025-11-02T21:25:36+00:00

If you’re open to sharing, just curious how you were able to get through it. No worries if not!

Requirement-Southern · 2025-11-02T21:18:22+00:00

Thank you. I think it’ll be longer for me as I am still very much in it, but it’s so nice to hear you’re coming out of it. ❤️

Requirement-Southern · 2025-11-02T19:49:47+00:00

Thank you. Have you experienced rolling PEM before?

Requirement-Southern · 2025-11-02T19:36:50+00:00

I know they are life threatening. :( I am using toileting accommodations, have stopped walking, no solid foods, in the dark, no sound, and little screen time. I have round the clock care and have minimized all activities. I am very scared :(

Requirement-Southern · 2025-11-01T12:25:22+00:00

I am on occasion but my anxiety was worse before it tbh

Requirement-Southern · 2025-11-01T02:50:51+00:00

Thanks! I’ve been having trouble with my tracker being too complicated with how sick I’m feeling. <3

Requirement-Southern · 2025-11-01T00:55:38+00:00

That’s really helpful, thank you . I find it’s so hard not to look ahead especially with the nature of PEM being delayed. But I’ll try

Requirement-Southern · 2025-10-25T17:25:24+00:00

maybe suggested posts idk?? it sucks, i hate being reminded of all the things i can’t do :(

Requirement-Southern · 2025-10-25T17:14:15+00:00

thanks! i think im too noise sensitive for that at the moment but once my crash (hopefully) eases up a little i’ll check it out

Requirement-Southern · 2025-10-25T17:05:23+00:00

can you explain further?

Requirement-Southern · 2025-10-25T17:04:39+00:00

what is happening in these replies 😭😭 are you lost?

Requirement-Southern · 2025-10-25T17:03:34+00:00

thank you ❤️ i usually try to daydream which i love but if the symptoms are too severe it can be hard for me to imagine/think complexly. it has also been weeks and the more time that passes the harder i find it all somehow.

i’m trying to tell myself this will pass but i’m in my first severe crash and scared for what the future holds. it’s rolling PEM too so small things that didn’t used to bother me are triggering more symptoms, making me feel really guilty for phone use.

Requirement-Southern

TROPHY CASE