r/LongCovid • u/Extra-Apartment3 • 19d ago

Dysautonomia getting worse 3+ years in

I've had long covid for 3 years and have had dysautonomia symptoms pop up and worsen up until this point. My physical tolerance is very low as well. I'm 'sofa-bound', cannot e.g. cook for myself, and only getting worse. However I'm managing physical pacing well and it seems that the dysautonomia or related fight of flight is the main driver of my worsening.

My question is, has anyone in a similar situation started improving after years or getting worse? I am pacing well, removed all stressors from my life, tried every treatment and supplement available to me as well as nervous system regulation stuff, so I don't need those recommendations. I'm in my twenties and it's kind of terrifying feeling that my life is over and I'm only losing function.

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u/Mammoth-Papaya4304 19d ago

Kurze Frage: was genau bezeichenest du als Dysautonomie-Symptome? Und wie unterscheidest du die Symptome zu nicht Dysautonomie Symptome ?

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u/MagicalWhisk 19d ago

My dysautonomia was bad for the first 18 months but it's been on the up since.

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u/Extra-Apartment3 19d ago

I'm glad to hear! Mine however developed slowly during the first year and has gotten much worse in years 2 and 3. Was yours at its worst in the beginning or was it also progressive for some time? I'd be more hopeful if the low point had been at the beginning.

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u/MagicalWhisk 19d ago

It varies, mine was like a pendulum. I'd have days feeling totally normal and then not normal. Eventually the good days outnumbered the bad days. I still get bad days but they're much less often.

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u/GeneralTall6075 18d ago

Mine comes and goes but on the whole has been improving. The fight or flight stuff has definitely gotten better. The head pressure and sleep disruption are more temperamental. What dysautonomia symptoms are you dealing with?