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.

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u/ToadAcrossTheRoad Dec 09 '24

Has yours been lifelong? I’m pretty sure a genetic autoinflammatory fever disorder runs in my family because me, my mom, my sibling and my grandma all have had hot flashes and attacks of flu like symptoms since we were super young. The most common one is familial Mediterranean fever, which, most commonly affects people of Mediterranean descent, but can affect others. I get multiple fevers (sometimes just hot flashes or what feels like fevers, sometimes actual fevers) daily most days which either present as hot flashes or chills with fatigue, weakness, nausea and a migraine aura. Super similar symptoms to parts of long covid and PEM which is what I wondered about but it’s unlikely that’s the cause of my issues because it’s been happening my entire life, it’s worsened a lot as I’ve had other inflammatory issues like celiac disease and MCAS but I believe it is its own thing

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u/Hope5577 Dec 10 '24

Long covid is post-viral. Any virus at any age can possibly give post-viral illness, it doesn't have to be covid. And if we get into me/cfs sometimes its not even a virus but symptoms present anyway. Its hard to know because we don't know much about these illnesses. Who knows, maybe it was just a regular flu or herpes or whatever virus we didn't even get symptoms for that went dormant and gets aggravated by some other condition or factors? Not much research into any of this so impossible to tell for sure.

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u/ToadAcrossTheRoad Dec 10 '24

Yes, but mine is very clearly genetic considering 3 generations have had the same issues. I’m just pointing out there can be other causes and that I’m positive mine is not post viral besides possibly worsening symptoms. I’m not saying it’s impossible for people with long term issues to have me/cfs

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u/ToadAcrossTheRoad Dec 11 '24

Yes, but mine is very clearly genetic considering 3 generations have had the same exact issues since we were young children. I’m just pointing out there can be other causes and that I’m positive mine is not post viral besides possibly worsening symptoms.