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Have you ever had an illness that most people don't understand?

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  • My experience with post-covid symptoms was really nasty and the doctors couldn't diagnose me. I actually wrote a big lemmy essay on it like seven months after it all started. I'm not sure how to do cross-instance comment linking, but here is the lemmy.ml link.

    • Thank you. Long Covid is exactly what prompted me to create this post. I've been having symptoms for 15 weeks (insomnia, brain fog, exhaustion). My primary care doctor was useless.

      I've since discovered a lot of literature on my own that has validated my experience: that it's typical for general doctors to have no clue, they're still working on finding good biomarkers for the condition (it's not easy to test for), and I've learned a bunch about PEM (post-exertional malaise) and self-pacing / energy-management techniques to prevent the push-crash cycle that people with Long Covid experience.

      • Did you take an antiviral like Paxlovid when you had COVID? Apparently they're supposed to reduce likelihood/symptoms of long COVID, but there's not a large amount of published research about it yet.

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