Managing post exertional malaise

It is good to get tested to make sure you don't have cardiovascular or other covid-linked problems. I caught covid last March on a 7-day 350 mi bike ride and was sick for about a week. The long covid (LC) hit after that, and the main symptom was post-exertional malaise (PEM). So, I went from biking up to 80 mi/day to 5 mi on a exercise bike followed by a nap. Overall, I went from 100% to 30%. PEM is a waiting game, you can exercise/rest, but only to the extent that it doesn't trigger PEM because it can take hours or days for PEM to subside. If you are feeling "like your own self" one day, don't push it because the PEM crash is in the background. Resistance (weights) is easier than aerobic exercise. PEM is triggered by exertion, stress, not enough sleep, and who knows what else. Consider keeping a food log; covid can trigger food intolerances in some people (for me, it was celiac after having H1N1 years ago). My LC did go away, but it took 8 months.

This link is not a peer-reviewed paper, but has useful info: https://www.yalemedicine.org/news/long-covid-symptoms. These CDC guidelines are for doctors, so info more for what they should look for. https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-conditions.html

Do NOT try to exercise right now! Google "post exertional malaise." At the moment, pushing yourself could lead to long-term worsening of symptoms. Rest as much as you can for the next month or two, then gradually increase activity and see if you can tolerate it without feeling worse the following day.

You are absolutely right. For last few weeks, if I do a little too much one day, I can feel it the next day. I guess I need to nudge the throttle forward a little at a time, can't rush this. Your suggestion makes good sense.

Thank you all for sharing your experiences! I appreciate your support and advice. I had been pacing myself fairly well since I had the crash that prompted me to reach out to this community, but I am back in another (albeit milder) crash that started yesterday. I think this time it was triggered by driving - I was in the car for about 2 hours driving back/forth to appointments. I really find driving to be very exhausting because it’s just constant focus.

It’s really frustrating to accept that this is my life now, and really scary to not know how long it will last. Up until yesterday, I was feeling pretty good. Pacing myself for sure, but also functioning fairly well within those constraints. I had even convinced myself that I was improving and would be back to normal soon. The crash this week has made me realize that I am not out of the woods, that I am still vulnerable, and it scares me.

I was a cereal breakfast person but after 2 covids I crash near 4-5 hours to last 6-7 I have to have a substantial Bft and a nap and a snack midmorning to get to 1PM. If i'm planning on going shopping I have to skip BP meds till I get back.
So goes the battle for 3 yrs. However I'm 86

My exercise routine in the morning is entirely floor-based. I've never experienced a sudden flare-up. It consists of 20 minutes of stretching, ten push-ups, and a brisk cold shower. Surprisingly, even minimal activities like cleaning the house or moving lightweight items can trigger flu-like symptoms that last from two to six hours. I make sure to pace myself. I've also been prescribed a low dose of LDN, which I'll start taking soon. I'm hopeful that LDN will restore some of my energy, allowing me to gently lift weights and engage in extended cardio sessions. Quick cold showers or immersing my head in cold water provide relief. Initially, I began this practice to alleviate my anxiety before the onset of my fatigue symptoms. I believe that my PEM is a result of severe trauma and stress.

There has begun a national clinical trial on treating PEM with a program of “Pacing” — where it’s determined what amount of activity is tolerable for each person. Then that person wears an activity monitor and is coached toward very gradually increasing it.

The clinical trial has only a few study sites now, but more will be added.

Look up “Pacing” related to PEM online.

May you experience a steady recovery!

At the risk of being redundant, I crashed after doing a 20 minute walk video. This was my first, and I need help. What do you do all day while recovering?
My crash is a feeling of weakness, deeper fatigue. I am able to do the same things but I just feel like moving slower. Any suggestions would be so appreciated.

I was a Research Coordinator for Human Subjects medical research. So, one thing I do is research the topic of Long Covid online.

And, I’m participating in the RECOVER-VITAL national clinical trial for treatment of Long Covid. That involves responding to 3 weekly online questionnaires, and making periodic in-person visits to the local study site.

I also research other health-related topics online.

driving is a big deal for me. I haven't driven more than 1 1/2 hours since November 2020. We don't realize how much 'brain work' is involved. If I am going to do something taxing I plan nothing the day before and after. Normally I cross out 2 days a week for recovery; no appointments, errands, detailed/complicated brain work. It's what I need to be able to function the other 5 days a week. If I don't feel well I cancel my plans for the day.
It's a yo-yo life and taken 3.5 years to find my balance and where my boundaries are. There are far less things I really HAVE to do than I thought-sometimes I WANT so much to do something that it feels like a need, but it really isn't. Prioritizing, pacing and pivoting are my key words. Your balance is not the same as anyone else's. The longest I have gone without a crash is 4 weeks-I just keep forgetting to manage myself and revert to pre-covid expectations.
PT, OT, Speech made a big difference in figuring out how to do things differently.