I have MD but the Oncologist says my "Crash syndrome" doesn't correspond to the blood work. So I have to go back to the theory of long covid also. I have to have a substantial breakfast if I'm going to last more than a few hours. A crash consists of un-stableness and a MUST sit down and relax. So again --know your limits and work around them.

Listen to your “new normal” baseline. I was also doing the push yourself crash cycle for 1.5 years. It was through this support group that I learned the condition that fit with my symptoms -post exertional malaise. I wasn’t nuts! It’s a real thing. Before that I was just lost. And I did a lot of research, as much as I could and relearned what my body could do.
Combined with that I finally saw a hematologist. After 1.5 years of bloodwork, X-rays, cardiologist tests, mri scans for lung blood clots, getting a pulmonologist to be diagnosed for asthma for the first time, more blood work, emergency room visits… etc… yall know what I mean, I finally got some answers. What other doctors saw as a white blood cell count that was marginally elevated but within normal limits, the hematologist did more expansive bloodwork and found I wasn’t absorbing and storing iron. Put me on oral supplements, to see if they worked. It didn’t. So eventually got an iron infusion. LIFE CHANGING! It was like I came out of a groggy fog. Within a week I was able to do more - still pacing myself of course. But I did t have to take a nap on my office floor multiple times a day. And sleep all night.
The referral to the hematologist was on a whim by my pulmonologist. I just kept asking, “What else do you think? Who else might have answers?”. And she was like… “Well, your bloodwork is a little off with elevated white blood cell counts. I don’t think it’s anything but let them see if they can see more.”

And now I have returned to being a field biologist. I was able to accept a demanding field-based job. I would t have been able to take my dream job if I hadn’t received the infusion when I did.
Also - the infusion I got was fully covered- partially by my insurance and the rest by the drug company. They had a program to cover all out-of-pocket costs. And I got that just because I asked, after getting the initial quote, if there were any other options that might not take me out of work for as long and cost so much. And the doctor had their team find out.

This support group was a game changer for me: mentally and physically. I am not back to where I was, but I feel like I am able to move forward.

Next stop is a neurologist for addressing the internal vibrations….. the healing continues.

Wishing everyone well. Sending hugs to you as you fight for your health and a return to normalcy.

From NPR 1/24: A discovery in the muscles of long COVID patients may explain exercise troubles

Now research published this month in Nature Communications gives new weight to this assessment.

By taking biopsies from long COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.

Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy.

"We saw this immediately and it's very profound," says Braeden Charlton, one of the study's authors at Vrije University in Amsterdam.

The tissue samples from long COVID patients also revealed severe muscle damage, a disturbed immune response, and a buildup of microclots.
https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria
I have had long covid since 9/22. What you are experiencing is what I call "the roller coaster". If I have am feeling good and I have a required activity with physical exertion, I plan on a "crash" within the next 3 days, and it does hit.
My wife and I walked one mile per day before covid. Now I am slowly up to 1/4 mile once a week, and than I wait to see if I will be hit with PEM.
I have found 3 food items helpful: natto (for the microclots) with kimchi (for the immune system) and manuka honey (counters the PEM ).
It goes against our nature, and our obligations, to rest in order to get better, but you will not get better with over exertion.

I got Covid on Nov. 24, 2024. I am now 3 months out. Prior to getting Covid, I was at the gym 3 days a week, walking 2 miles, taking a TRX circuit class and stretching for 45 minutes. I just got back to feeling normal after years of dealing with Lyme disease and Bartonella.
I now just went to PT at the Post Covid Care Clinic run by Washington University in St. Louis this week. She tested me with a 6 minute walk and sit to stand X 5.
My scores were all very much under average for my age. My plan of care is to keep everything “light” exertion. So I am to walk or ride a stationary bike with no resistance for 10 minutes, if I can at a slow pace that is comfortable for me about 2-3 times a week.
After going to see her, I was mentally and physically exhausted. I crashed two days later.
So take it easy. DON’T push. It’s so very important to just do a little at a time and rest.
I was a marathon runner and triathlete when I was younger so push was my way of discipline. I have to retrain my brain to stop and go slowly. I’m not the person I was before Covid but I hope that I will slowly but surely recover.
I hope you will go slowly and feel the support of those here.

I have been back to work and daily activities for just a week since having Covid for the first time. Each time I try to do a light workout, I end up feeling exhausted and unwell. Following this thread in hopes of answers!

@axh11 - My wife and I both got Covid 1st time on Feb 2nd. She seemed OK in about 7 days. During Covid, I was worse, fever, lost smell and taste for 5 days and other issues. I'm still having same symptoms as you, sluggish and tired. I feel like I'm coming down with the "bug" and never do. If I do more than perhaps I should, I'm exhausted later in day and next day. Still have chest cough and heavy felling in sinuses. Hard to explain but as you say, feeling unwell best describes it.

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

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.

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!