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Does anybody's CFS get better in the late evening?

Posted , 20 users are following.

jackson666
jackson666

So I'm 19 years old have have been dealing with horrible brain fog and fatigue for a couple years now. It's basically ruined my life. I can't do basic activities during the today without wanting to lay down. My brain and eyes feel like there made out of lead. And my body feels like a wet rag.

I was just curious because almost all my symptoms seemed to disappear around 8pm on the dot sometimes. I don't know if it's because endorphins are releasing or what but I feel much benter late in the evening until I go to bed. It makes not want to go to bed because I feel alive.

Does anyone else have this?

Thanks

1 like, 16 replies

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  • sarah53670
    sarah53670 jackson666

    Posted

    I posted here previously. I don't know whether it's linked to feeling better in the evening or not, but I was recently diagnosed with Orthostatic Cerebral Hypoperfusion Syndrome (OCHOS). You can find papers about it on PubMed.

    My case responds to steroids, although I only found that out by chance when I took steroids for a rash. So that means it is auto-immune, although there's not really anywhere to go on that. And there are other auto-immune diseases that have been shown to follow a daily cycle.

    Luckily I also respond to calcium-channel blockers. They stop the arteries to the head from wrongly constricting and restore normal blood flow. (Not everyone with OCHOS improves on CCBS, but many do.)

    I suggest you ask to be evaluated for orthostatic intolerance and cerebral hypoperfusion.

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