Managing post exertional malaise

@athenaatkins I should have mentioned a helpful detail. Do you have a Smart Watch like an Apple Watch? I use my Apple Watch to measure my active calories in the Health app. That allows me to put a number on the limit I am trying to stay under. "Active Energy" are all the calories you burn when you aren't completely sedentary which the app classifies as "Resting Energy".

I don't know the other technologies (Android and Google world for example), but I am certain other technologies will do the same thing.

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.

Hi Jessica,
Thank you for sharing your experience and what’s helped!

I too have been in a complete crash cycle for over a year now because I kept pushing myself with exercising and dieting that just kept making me swell and gain weight. Every doctor I talked to just kept shrugging at my increased body weight and pain, they said I probably had metabolic syndrome and to manage my diet and exercise more. (I already exercised a lot, I’d walk/hike 1-2 hours 4x/wk, and do yoga and gardening 3-4x/wk), then I added weight training and plyometrics and my body crashed HARD! Palpitations, racing heart nonstop 24/7, no sleep, constant flushing, like I was on adrenaline 24/7 for months, full body swelling, brain fog so bad I couldn’t play any type of game or follow conversations. It’s been over a year now and I’m praying I can get back to being able to just walk again.
Showering and getting dressed cause me to crash now… I’m severely limited.

But I’m learning. I have to see pacing, not as a way to level up, but as a way to NOT crash! I never looked at it that way before, I kept hoping I was better and then would try and live a normal life (exercising isn’t even an option for me, I’d like to do just normal stuff like showering and cooking and errands), but each normal day of living turns into a crash for days.

After reading more about PEM, I’m finally realizing I HAVE to NOT crash in order to recover. I lose hope sometimes when I’m back on the couch for days after being able to participate in life again. I think the hardest part is not knowing what I need to do to keep from crashing.

I’ve been taking Paxlovid off label which has helped me a lot! My brain fog is basically cleared, and my swelling has decreased by 60%, my crashes are still there, but I’m able to shower without crashing (unless I do too much cleaning or errands).

And now that I know I’m not supposed to try and level up, and that rest, rest, rest is the way to recovery, maybe I’ll stop crashing at all 🙏🏻.

It’s good to hear success stories like yours. It gives me hope that I too could have a life again!

Just curious what your hemoglobin and hematocrit were prior to blood transfusion? And what your hematologist ran for you that’s not part of normal CBC?

Thank you for sharing your journey and I’m so happy to hear you’re back to living and able to manage work!

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.

Thanks for this. I read that article and it is like a beacon! Seeing my MD this week in follow up. Long, frustrating road since long covid set in last spring.
Have you (or anyone in this thread) had muscle spasms? Been getting them in my back, severe.

For muscle cramps / spasms I use potassium and magnesium.

"Potassium is a nutrient that helps facilitate muscle contractions. It is a neuromuscular transmitter that provides communication between muscles and nerves. This communication breaks down when potassium levels are low, and muscles can “get stuck” in a contracted position that we feel as spasms or cramps. Historically, potassium has been associated with bananas. However, they are not the best nutrient source, providing just nine percent of your daily recommended intake. Instead, consider one of the following five foods listed below to help with muscle cramps:

Sweet potatoes
Melon
Cooked Spinach
Nuts
Beans"
https://www.wdhospital.org/wdh/services-and-specialties/orthopedic-care/blog/nutrition-tips-to-prevent-cramps#:~:text=Potassium%20is%20a%20nutrient%20that,feel%20as%20spasms%20or%20cramps.

I use "No Salt" for seasoning which is 100% potassium. It is in most groceries, made in Germany. There is also "light salt" that is 50-50 sodium / potassium.
I also take magnesium taurate daily. With those two, I have eliminated the cramps. Hope it can help you.

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.