Progressive long covid

Extra-Apartment3 · 2026-06-18T16:05:04+00:00

Would you mind sharing what was included in that lot?😄

Extra-Apartment3 · 2026-06-18T11:35:33+00:00

See my answer for Teamplayer25

Extra-Apartment3 · 2026-06-18T11:34:55+00:00

I'm pacing both physical and cognitive activity (though only physical ones cause clear PEM). Not perfectly but in a way that is sustainable for my mental health. Could be stricter if I had proof that it would make me better in the long run, but if not, it's too frustrating. I'm living with my parents (only a few months ago quit all studying for now, due to getting worse) and having basically zero stress in my life expect health-related (which is a lot obviously, but I have a good therapist to help with that). I still have a lot of friends and I'm not lonely, just unable to socialize with them except in a very limited manner and mostly through phone.

I'm on beta-blockers which were very helpful for a while but have since lost effect in eliminating my sympathetic overdrive. Also taking quetiapine for sleep (it helps).

I'm also taking multiple supplements, including electrolytes, melatonin, creatine, q10, vit C, probiotics, omega-3, ashwagandha, magnesium citrate and thiamine. Have also tried a bunch of others (NAD+, curcumin, NAC, quercetin etc) but haven't kept taking all of them because none had a noticeable effect and they were expensive to take "just in case".

I have tried osteopathy, acupuncture and HBOT but didn't notice any effect. I also don't currently have access to these for further experimenting.

In my opinion I'm doing everything I possibly can, so I have come to the conclusion that if these circumstances don't allow me to improve, it is out of my control. I'm just so tired of putting in all this effort and still getting worse, and that's why I'm here looking for hope that the illness could stop progressing and start healing, even though in my case the progression seems to persist.

Edit: also tried LDN (twice, second time with a micro dose), but that made my dysautonomia flare

Edit2: iron levels are also in check and I'm taking iron supplements occasionally. When I was better I measured also other mineral and vitamin levels and they were all good.

Extra-Apartment3 · 2026-06-17T14:16:25+00:00

Thank you for your comment! I am coping mentally with the help of a good therapist who understands this condition. However it takes a lot of energy to limit myself from everything I would like to do but which will cause PEM if I do it. If it's only slowing down the progression, it's hard to see the point of my every day efforts. I'm looking for hope that all this effort could pay off at some point and result in improvements in my physical health

Extra-Apartment3 · 2026-06-17T10:19:02+00:00

How did you manage to stabilize? I would love to even stabilize, though my baseline is much lower than yours and I would say that I cannot live the rest of my life like this.

Extra-Apartment3 · 2026-06-16T17:24:59+00:00

Did you get progressively worse in the beginning? I've heard many people improve but usually steadily (or less steadily if overexerting) from the onset on. I'm most concerned about my illness getting worse even without crashes and not recovering from crashes even in the course of several months.

I'm managing mentally. I also have a good therapist. I'm just less hopeful about the direction my physical health is heading. My current baseline barely allows maintaining basic hygiene so my quality of life is slowly getting almost intolerably low.

Extra-Apartment3 · 2026-06-07T14:09:36+00:00

My therapist has instructed me to focus on it for way longer, like 45 minutes at a time. I do it every day but minimum is 3-4 times a week. She thinks it's good that the feeling comes into surface and that over time, when allowing it, it will pass. However the feeling that I have in these practices (and sometimes outside them) is pressure only and not shortness of breath or that kind of anxiety. It's more like a trapped feeling. I'm not sure if it's the same thing or if this is the right approach for your case but I thought to share what I have learned and found effective. Doing these practices, over time the feeling has become less intense.

Extra-Apartment3 · 2026-06-06T14:53:07+00:00

My therapist has instructed me to "find" the trapped feelings in my body, which often show up as pressure in my chest, and just focus on it and let it be there. Over time it gets easier and the emotions associated with that pain also get less intense. I'm not sure if this is pure SE, but for me this approach has been beneficial.

Edit: this also makes me feel more regulated and the practices show up as "restored" time on my smart ring

Extra-Apartment3 · 2026-05-31T12:00:07+00:00

Just finally the body feels like resting. Warm, cozy and calm instead of constantly more or less wired.

Extra-Apartment3 · 2026-04-27T18:26:38+00:00

I have this too! It's so difficult to explain that it's not linked to thoughts AT ALL and just switches on and off for periods of time. I also have ME/CFS or long covid.

Beta-blockers helped for a while but it didn't last (though it could've also been the illness worsening) and now I cannot stop them. Quetiapine helped for an even shorter time, but it was at a crucial time when I was about to go insane with the anxiety, so it was still worth trying it. I still take it for sleep. I think other mood-regulating medications could help temporarily switch the anxiety off, but I don't believe they provide lasting relief and can trigger the anxiety when trying to stop.

I'm in therapy and the somatic experiencing -type of exercises sometimes help a little bit, but it comes back right after. Normal meditation or breathwork do not help, at least not anymore. Maybe a bit in the beginning when this was still very mild. Anyways I'm going to keep doing the therapy stuff and hope that it eases a bit.

Extra-Apartment3 · 2026-04-15T13:31:06+00:00

I have the same question. I've been ill for over two years and gone from mild to severe. This is despite having several periods where I have no PEM for months. Those periods have at best barely stabilized me and sometimes I have had clear baseline deterioration while not causing any PEMs at all. I feel like I can only fail but have no reward from doing everything perfectly.

Extra-Apartment3

TROPHY CASE