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Pierre Igot's avatar

Along with PVS (post-viral syndrome), there's the very real possibility that some chronic sufferers, like myself, suffer from PTS (post-treatment syndrome). I cannot *prove* that my own chronic condition is the result of a very ill-advised treatment with strong antibiotics and NSAIDs, but I have good reasons to believe it to be true. In both cases the immune system is thrown out of whack. The difference is the cause (nasty virus in one case, nasty medication in the other case).

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Eremolalos's avatar

Damn! I had something years ago that was almost exactly the same as what you are describing. You are absolutely right about "fatigue" being the wrong word. The best word I've found for the feeling I was stuck with for 3 years is "malaise." It's feeling *sick*. Malaise is often accompanied by fever, fatigue, headaches, nausea and whatnot, but it is not any of those things -- it's just a deeply unpleasant sick feeling, and you can have it in the absence of all the trimmings. I was lucky -- my syndrome just faded away after about 3 years.

I totally get it about how hard it is to come up with plans to try, and then implement them. Of course, you have excellent reasons to do that -- but you also feel crappy and low-energy, and the plans may look as bleak and gray as everything else. I think this blog is an excellent way to hold yourself accountable and get support.

OK, so I have 3 ideas of things worth trying. You may have tried some of them already.

-Find out what kind of flu was dominant when you had the illness that kicked off this syndrome, and get vaccinated for it. Maybe even get the extra-strength version for seniors. I'm suggesting this because a fair number of people with Long Covid felt better after getting a covid vaccination. This is analogous. Of course, it's also risky -- what if it makes you worse? Maybe don't try this one before trying safer options.

-Take a course of whatever antiviral med works best against flu or whatever you thought you had. Same logic as above: Some people with Long Covid say they were helped by Paxlovid. And if you're going to try this one, do it intensely -- like do 2 courses back-to-back.

-Both of the above require the cooperation of doctors. If you can't find someone who is willing to try this stuff, consider paying for a "boutique" doctor for a year. You'll have to ask around to find out which of the boutique docs are willing to prescribe off-label in the ways I'm suggesting.

-Sleep as much as you can. Use blackout curtains, earplugs, special mattresses, weighted blankets --anything that helps you sleep better. Do not use an alarm clock. Sleep until you wake up naturally. My reason for suggesting this is that I have had some success with using prolonged sleep to turn the corner on colds and the flu. Sometimes when I'm sick I do my best to sleep 12 or 14 hours, maybe using a dose of benedryl halfway through the night to prolong my sleep, I often wake up feeling mostly recovered. I'm not *sure* the mega-sleep theory is valid -- maybe 8 hours on those nights would have worked just as well. Also, I have always been very intolerant of sleep deprivation. If I'm a couple hours short on sleep, I really feel a LOT less good, so maybe sleep is more important for keeping me in good shape than it is for most people. Still, long luxurious sleep seems worth a try for you, and at least it's not a fatiguing treatment! Oh and about the alcohol -- it damages sleep architecture. So do benzos. I'm sure you know that. So what you need to get yourself is a series of long "architecturally sound" sleeps.

I'll come back with more ideas as I have them.

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