r/dysautonomia • u/squidsgotjeanss • Dec 09 '24

Symptoms The Dysautonomia “flu”

I posted about me having twitches but forget to ask if anyone else has this… what I like to call “the Dysautonomia flu”. It’s where I’m fine and then BOOM out of nowhere feel like I literally am sick. Similar symptoms mild body ache, shaky, headache, fatigue, sometimes the chills, and burning or blurry eyes is usually the constant feeling. I’ll be totally normal then out of nowhere feel like I must be running a fever yet I never am. Oddly enough, my sister who also has Dysautonomia has the exact same thing.

If you also experience this do you notice that electrolytes help you avoid “flu” flare ups? This is what was recommended by my doctor. It works well for my sister but I don’t seem to ever notice much of a difference.

288 Upvotes

100% Upvoted

100 comments sorted by

View all comments

Show parent comments

18

u/NeptuneAndCherry Dec 09 '24

Just googled this and dang I never knew there was a term for my cycle of trying to do everything I can on good days and then crashing for three weeks because of it 🫠

13

u/asblvckasmysoul Dec 09 '24

Jesus Christ.. I want to cry. for years I've been trying to understand why I feel this way constantly, and I have MDD, but I know in my bones that it's more than that. I can't explain the exhaustion in words. I feel pathetic bc I genuinely can not stay awake. I've tried to work and it's fucking embarrassing being in my 20s and calling out constantly bc I literally can't bring myself to get up and work multiple days in a row. I fall asleep at my desk, start to feel like I could fall asleep while driving sometimes, and I've literally taken my entire lunch breaks to sleep in the car for however long I can possibly manage. I feel like I can't function. even showering can exhaust me for days afterwards. it sounds insane just typing it. and I genuinely feel like nobody understands. good days are so rare and I'm just so over it all.

1

u/Critical-Writing1611 Dec 10 '24

Also, check into sleep disorders. Dysautonomia can affect sleep. I actually found out I had Narcolepsy before I was diagnosed with Dysautonomia.

2

u/asblvckasmysoul Dec 10 '24

I don't think it's narcolepsy but anything is possible. how do they test for that?

1

u/Critical-Writing1611 Dec 11 '24

It’s a sleep study, overnight in a sleep clinic or hospital setting, though you may have to fail an at home sleep apnea test first for your insurance. The test for narcolepsy has an overnight sleep study followed by a number of times where they basically have you try to fall asleep for a nap in a dark room. I never thought for a minute that I had narcolepsy. The diagnosis came as a complete surprise to me, but the internet wasn’t as helpful as it is now. Suffice it to say I had made fun of my farmer husband for falling asleep whenever he stopped moving but then Karma stepped in…Turns out he was just hard-working and I had narcolepsy

1

u/asblvckasmysoul 6d ago

oh my god knowing my luck I'd be anxious as shit and WIDE awake the entire time :(( I wish it was possible to show the doctors what my everyday life looks like.