u/longpastgone272

TLDR not having an obvious crash yet a week after getting back from the hospital very confused what’s going on?

OK, sorry I keep making posts but I need help. I’m so confused.i am severe. I got back from the hospital a little over a week ago. I keep switching back-and-forth between crash and adrenaline. Sleeping 13 hours and then being unable to sit still and unable to stop going on my phone all day. But even when I’m crashing, I feel no worse than before I went to the hospital.

This makes no sense?? part of me is wondering if I don’t really have MECFS after all somehow. Part of me is wondering if I’ve just been in rolling PEM for a very long time and so I have no idea what’s going on and how to parse crash from not crash. Very tempted to just let myself do everything I want to do since all that light sound and talking seemed to not cause the catastrophic crash I expected. Literally I was talking all day for three days. Before I went to the hospital one hour of talking caused baseline lowering crashes.

If I somehow don’t have MECFS or have some weird version of it where this isn’t an issue, I feel like I need to do things I need to do so badly. If I’m rollingPEM…. This is real bad. And I am very scared of what will happen since i’m still not crashing and can’t get off my phone. I will say there have been multiple times where huge over exertion over days weeks or months have caused crashes that were days weeks or months delayed . so there is that. but also times where it didn’t seem to ever come?? but again i think it might be cumulative and i didn’t really get away with it since t i’m pretty sure I’ve been enrolling PEM for over a year at this point.

And I’m only half diagnosed right now. Doctor said I meet all the criteria and she could already tell. I had it after 20 minutes of taking to me but didn’t officially diagnose. Somebody tell me that I don’t actually have MECFS and I can call my boyfriend 😩

fuck the hospital fuck adrenaline surges I should be resting to recover from the hospital, but instead, I am having adrenaline surges because I went to the hospital whhhhh I need to get the hell off my phone when I get off my phone. I just start moving around in bed. I like genuinely can’t. I hate everything. That was the biggest overexertion I have done since becoming severe. This is really bad. I need to rest. Adrenaline surgeons are the worst symptom. Always so bad right when you need to rest the most.what do i doooo

tldr extremely unpredictable pem.what’s going on
can’t tell if it’s adrenaline masking rolling PEM or something else sometimes big exertion small crash small exertion big crash?

am severe. in dark room 99% bedbound normally can’t use phone Pam is really unpredictable. They seem exact exertion can feel like it’s fine only 1-2 day pem and then I do the same thing another day. and my baseline decreases. This is doing the same exact exertion and I’m feeling just as up to it, i’m not talking about doing the same thing on a good and a bad day. Extreme exertions over multiple days can feel like it’s only a mild pem or like it’s never really hits. I have horrible, adrenaline surges. Feel like it might be adrenaline masking. But then it feels like I might get away with it. I get some level of Pam. but I’m adrenaline the whole time and then things just sort of calm down into a new and seemingly better or same baseline ?? just got back from hospital. First time leaving the house. in 8 months. So much extreme exertion. so much talking so much light sound.being touched . poked. 3 days of hospital. No I keep going on my phone. Can’t rest at all really can’t rest. I got back yesterday I slept last night, but I was on my phone all yesterday and today. Destroying my eyes. can’t calm down and rest. Is it possible I will get away with this? Am I ever getting away with it or am I just in constant rolling Pam? Or adrenaline masking. Woke up this morning feeling awful but nowhere near as awful as I feel like I should ? Maybe it hasn’t fully kicked in yet but there’s been times where I have lots of exertions over multiple days and it feels like it never fully kicks in and then something small like a month later makes me crash real bad and lose lots of baseline. I’m so confused. Does anybody else experience this unpredictable? pem. sorry for horrible formatting voice text can’t edit

improvement or super delayed crash??

TLDR: Severe ME/CFS. Crashed bad, then had an adrenaline surge starting 4 weeks ago, did a whole bunch of over exertions. Thyroid dose lowered 3 weeks ago. Now feel way better (4hrs phone use a day) but fear it's adrenaline/PTSD masking a delayed crash. PEM don't feel normal, so feeling confused.

I am severe. My baseline was basically doing nothing at all but listening to audio with brakes. I had to turn off the fire alarm and i felt sort of okay but not great and 2 weeks later I crashed bad and I couldn’t listen to audio for a week huge struggle to eat think etc.

Then seemingly in the middle of that crash I randomly woke up at 1 AM and and I was absolutely coursing with adrenaline and then a lot of things happened at once, I started flashback a lot cause of my PTSD and using my phone a lot to keep it under control , and I was crying a lot and talking to my mom about it, I had to see the doctor over Telehealth about my meds, basically I did a whole lot of stuff that was way out of my energy envelope and should’ve caused a crazy crash given my previous baseline. Then I got my thyroid meds adjusted (they were slightly high, not low).

it’s been about four weeks since I woke up in the middle of the night having adrenaline surges, and 3 weeks since I started the new thyroid dose. I have not been able to fully rest. There have been a few non-consecutive days where I was able to not use my phone all day, and some days where I am flashbacking a lot less than others. But I’m averaging about 4 hours a day of looking at my phone (absolutely can’t handle less cause the PTSD/adrenaline) plus listening to audio.

i FEEL significantly better than I did before that big crash. But I also don’t really trust it and feel like this might be adrenaline and PTSD driven?? it doesn’t feel like obvious adrenaline surge with jitters. But also, I feel like this has happened before. overdoing it at college was the beginning of my descent into severe, and when I first came home, I could not rest for the life of me for two months and there was a week during that period where I felt better than I had in years i even went swimming which is crazy. then i crashed BAD. the fire alarm situation was similar with a 2 week weird period.

i’m confused because this doesn’t seem to be what happens with most people? You’re only hear about three day delay. now that it’s been a month, and especially with the dose change, making me feel like it’s possible that getting on the right dose mitigated the crash, i realllyyy want to belive it’s real improvement and take a god damn shower like my mom thinks. but also small things don’t seem to be having normal crash reactions right now. i still feel the effects but like, not the way i usually do? not as bad or for as long, and not the same symptoms though to be fair those do change. I just feel really weird, in a way i am having trouble describing. what do y’all think? improvement or super delayed crash?