Weeks of extreme PEM/crash: normal?

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I don't mean to start yet another thread on myself and my crash, but I was hoping to get some answers/hear about some experiences.


I had my worst crash ever almost 4 weeks ago now right at the end of my covid illness, and went from housebound to bedbound overnight, now barely getting to the toilet, using phone 5 min at a time every now and then, and eating meals at the foot of the bed etc. I can hardly tolerate speaking to my parents for 30 s at a time without a uncomfortable feeling welling up in my chest.

The PEM/crash has persisted, and actually got a bit worse around day 10 or so despite me doing as little as I could and resting as much as possible.. I've been taking pregnenolone and cumin the entire time to get through the day, and any time I've attempted to reduce the dose I've been hit with waves of crashing. Ie I get a weird feeling of a panic attack type of vibe, extreme wooziness, heart racing, some parasthesia etc. Not sure if they are actual panic attacks but they seem to only occur when I overdo it..

Is this normal, and is just a super intense crash / mass of PEM? Or should I go and get investigated for other things that could be making it this bad..?

I'm currently trying to lower my pregnenolone dose and use a little more cumin if needed to see if I can unearth any useful symptoms, or if I get too bad I plan on going to the ER.. But then I'm not sure what "too bad" is with ME either.

It all feels very overwhelming and is extremely difficult to deal with, especially over such an extended period.. Even when I first crashed to severe I had these type of symptoms for a few days (with 50 mg pregnenolone not 650-700 mg.. And no cumin) at a peak, and then it slowly calmed (with some small waves) over the following 2-3 months. This just feels really weird..
 
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Why get boosters with a vaccin that works and tested on the old Wuhan variant? These vaccins doesn't work for omicron, the dominant one now. Everybody gets omicron. I am happy you feel better after booster this is a very interesting observation. But a lot of ME patiënts get much worse after vaccination. Strange disease we have,
I think you replied to the wrong thread
 

Rvanson

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I had COVID-19, but my body seemed to have kicked it to the curb, I don't think spending 5 days in the hospital did a thing to kick it out, but my CFS/ME became worse, but getting better thankfully.

To me, cases like mine are all about the money they made, and I am not paying a single dime to the hospital, no matter what. I was NOT intubated or anything, but I couldn't sleep at all, They had some air-filter device in the room that was noisy as hell right near me. Had the doc not released me, I would have walked home in the hospital gown. No, I'm not joking at all.

And, No, I am not taking any mNRA shots that can give you blood clots. I am mNRA vaxxine free and always will be. No Covid shots for this old boy, who has been studying ALL the cases of immediate or shortly after deaths due to the injections. It is easy after all the years I have spent, searching for a cure for CFS/ME.
 
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So nobody has had very intense PEM/crash for weeks on end? I don't know if I'd be able to stand the symptoms without pregnenolone and cumin - is that normal?

Is it because I'm still doing too much..? I'm doing minimal but still go to the bathroom and eat etc, use phone a little. Do I just have to wait it out?

Maybe @Martin aka paused||M.E. You have some experience with bad crashes like this? Sorry to always tag and ask you.

I can't think of who else might have had this but anyone please tag them if you think of someone. Thank you!
 
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So nobody has had very intense PEM/crash for weeks on end? I don't know if I'd be able to stand the symptoms without pregnenolone and cumin - is that normal?

Is it because I'm still doing too much..? I'm doing minimal but still go to the bathroom and eat etc, use phone a little. Do I just have to wait it out?

Maybe @Martin aka paused||M.E. You have some experience with bad crashes like this? Sorry to always tag and ask you.

I can't think of who else might have had this but anyone please tag them if you think of someone. Thank you!
I can only repeat myself: Abilify, Pregabalin and Ativan are the only things that help