Pattern predicts PEM crashes

Posted by donnastefan @donnastefan, May 25 2:32pm

Ever since I got COVID three years ago, I experience periodic "crashes." These start with a distinct feeling of exhaustion radiating from my chest throughout my body. It kind of feels like the flu coming on without the muscle aches or fever. I am then wiped out for 3-4 days feeling exhausted. I often have chest pain that kind of feels like I've been lifting weights and I get a congestion-like cough but no real congestion. I've struggled to figure out what is going on and had every kind of medical work up you can imagine (heart, lungs, blood, etc.). About a year ago I starting wearing a Garmin watch and logging when I had these crashes. I was hoping it might reveal something but I could never make sense of the data - until now. On a lark, I decided to download the Garmin data and put it in AI. It found that 3-4 days before these crashes, I have a day where my average heart rate is elevated and my average stress level is high. One day it was a family BBQ. Another was a day that I was travelling. I didn't feel anything out of the ordinary those days but sure enough, 3 to 4 days later I crashed. So I'm wondering if anyone else has seen this pattern? And if so, what steps did you take?

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sanDGuy | @sandguy | May 26 12:27am

Yes, with the help of technology, you seem to have self-diagnosed pretty accurately! Very cool, but no specific suggestions, sorry!

diverdown1 | @diverdown1 | May 26 9:32am

See if your doctor will do a cortisol test. It usually consists of taking a Dextamathasone 1 mg around 11 pm the night before and then getting blood work to test your cortisol level. Just a suggestion. Hang in there. PEM is brutal.

djg3012 | @djg3012 | May 27 8:09am

I have to work all my activities around these awful crashes. Friends do not understand why I cannot do things day after day, It can be Family Bar-B-Ques or any celebration and travel.--Not used to this !!

donnastefan | @donnastefan | May 27 8:54am

In reply to @djg3012 "I have to work all my activities around these awful crashes. Friends do not understand why..." + (show)

@djg3012 - I hear you. I used to hike 3-4 times a week with friends and now have to cancel all the time. It's hard to explain to people. I've had people tell me "you just need to work yourself back into shape and push a little." The trouble is that I've tried that approach and it just makes the PEM worse. Very frustrating.

Lucy | @welchllb | May 27 10:07am

I concur without the research you did. After almost 6 years, I have these random PEM crashes. I'll walk with my group for two weeks almost every day and then, all of a sudden, after a walk, I'll come home with breathing difficulties, exhausted, shaky, etc. It takes a few days to get my energy back. Seems like just a part of Long Covid life. Take care.

vostie | @vostie | May 28 9:41am

I also agree...without extreme pacing, my life would be miserable. As long as I do tasks in small steps and rest, I am fine. I do have to stop about 2pm and lay down until 430 pm but I don't have to nap and can get most simple housework done. For me, I do not find a coffee with friends draining but a large gathering will exhaust me.

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