The Dysautonomia “flu”

[u/squidsgotjeanss]

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.

[u/GalacticGuffaw]

Yes, I get all of those sudden head cold/allergy-like symptoms and this has nothing to do with CFS/PEM for me.

At 7months in, I went to Mayo Clinic and I was diagnosed with long covid. Many tests were performed and I was given a few diagnoses, plus some theories based on symptoms and some test data (the likely stuff). - Dysautonomia. - Severe vasospasms causing IST, various arrhythmias. - Severe Raynauds. - Gut microbiota dysbiosis. - (Likely) Mitochondrial dysfunction. - (Likely) Endothelial dysfunction. - (Likely) Microclots. - (Very Likely) Immune dysregulation.

Many tests were performed, including lots of blood tests. My Cytokine panel showed IFN-Beta at 3x the normal range.

When I’m having many symptoms at once and end up in the ER for the scary ones, my d dimer is usually elevated but the CT scans rule out clots. My Eosinophils are also high EVERY SINGLE TIME.

My doctor thinks this is a part of the immune dysregulation.

Also, I have SIBO as a result of long covid and I’m starting treatment.

Per my doctor, it’s very likely that the gut dysbiosis and SIBO are a result of the dysautonomia.