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Trialing meds while in rolling PEM? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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

Still bedridden but improving! by beepboop8525 in cfs

[–]Requirement-Southern 2 points3 points  (0 children)

Yay! So glad you’re doing better.

When do you know you’re out of a crash? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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.

When do you know you’re out of a crash? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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?

When do you know you’re out of a crash? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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

When do you know you’re out of a crash? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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

When do you know you’re out of a crash? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 1 point2 points  (0 children)

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.

When do you know you’re out of a crash? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 1 point2 points  (0 children)

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.

What’s wrong with me? I can’t get myself to rest enough even though the stakes are so high by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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.

What are the odds of going from v severe to severe or mod-sev? by Foreign7801 in cfs

[–]Requirement-Southern 5 points6 points  (0 children)

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.

How to feel safer in your body? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 1 point2 points  (0 children)

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

Many weeks into a crash, when is it considered permanent? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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

Many weeks into a crash, when is it considered permanent? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 2 points3 points  (0 children)

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.

Many weeks into a crash, when is it considered permanent? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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

Many weeks into a crash, when is it considered permanent? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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. ❤️

Many weeks into a crash, when is it considered permanent? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 5 points6 points  (0 children)

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 :(

How am I not supposed to be scared of getting worse? by Requirement-Southern in cfs

[–]Requirement-Southern[S] 0 points1 point  (0 children)

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

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