Managing Post-Exertional Malaise (PEM): What can help?

I agree with the strength training. I continue to take exercise classes using light weights and resistance bands whereas walking is a real challenge. The class is done sitting, which is a bonus, followed by 15 minutes of balance training. Last week I couldn’t handle classes, so I didn’t go and tried to not feel guilty about it. Life as it is now.

This happened to me yesterday so it’s helpful to read your reply. I was talking with my family including grandkids as they were en route to an amusement. I was animated during the call and suffered for hours afterwards. Thank you for sharing your experience.

Check our this website. It's full of VERY helpful advice.
https://batemanhornecenter.org/merc/

Thank you for providing that link to the Bateman Horne Center website. I found a variety of useful information, especially about PEM and how to use Pacing to manage it

Thank you for your response. Do you have a recommendation for a particular product or brand? I read that the electrolytes are better than Gatorade because they have less sugar. Again, thank you.

It is inspiring and reassuring to read what others are experiencing and doing to manage LC. For context I am a retired 77 yr old. My wife died in 2021 and in 2022 I had a double lung transplant which was lifesaving although recovery is challenging. I first got covid when I was in the hospital, asymptomatic. Then was infected again in 2023 again asymptomatic. After the 2nd bout I started feeling tired all the time. and breathless with exertion. I also had significant orthostatic hypotension.
It took over a year and many tests and doctors to finally get a diagnosis. At least I could stop feeling guilty beating myself up about being lazy or just not trying hard enough. The most useful test I had was called I-CEPT which monitors your oxygen intake as well as the oxygen levels as the blood returns to your heart during exercise. This showed that although my new lungs were providing plenty of oxygenated blood my muscles (mitochondria) were not utilizing it, hence fatigue. The test also showed cardiac preload insufficiency meaning my vascular system was not squeezing enough blood back to my heart which caused dizziness, shortness of breath and fainting. All of this is consistent with how the COVID virus damages the autonomic nervous system
So I now take supplements to enhance the mitochondria efficiency. I wear compression socks, take midodrine, salt tablets and fluodrocortisone to increase my blood return to the heart. Next week I'm going to begin low dose naltrexone in the hope it will give me psychic boost as others have experienced.
I still just take it one hour at a time, doing both exercise and chores in 10-20 minute segments and then resting or sleeping. But like others, I'm determined not to let LC ruin the rest of my life, especially after getting new lungs. I have trips planned for my brother's retirement, visiting my daughter in Wisconsin and going on a 15 day cruise with my other daughter. Anticipation helps motivate me. Thanks to all of you for sharing your stories.

I appreciate all that you have been through and I especially appreciate your positive attitude for going forward. I am interested in the supplements that you are taking. Thanks for sharing.

Thank you for this plan to track symptoms and actually get things done. I used to be go go go, but my fibromyalgia put a stop to that about 15 years ago. Once I removed the stress (now ex husband) I was able to function better, but I still had a very stressful job. In December '24 I had a bad fall at home and ended up in the hospital for 2 weeks. Halfway through, I got COVID for the first time. I got all the vaccines as soon as they were available, so I definitely tried to protect myself. I had a relatively mild case, high fever and a lot of pain for one day, but the recovery from the accident took a while and I attributed lack of stamina to that. I ended up retiring two months sooner than I had planned, and was looking forward to doing things. HA. Two days in a row I did gardening and have been wiped out ever since with gastrointestinal symptoms and body aches all over. I am grappling with the possibility that I may have to really limit myself and boy, do I hate that. Glad to join a community that understands the struggle.

I am 5 years post COVID and still had the constant post exercise malaise until about three month into taking Low Dose Naltrexone. I have it formulated at a compounding pharmacy and started with 1.5 mg per day...I am now ramped up to 4.5 mg. I have to take it before 11 am or I have significant insomnia. It does give me quite vivid dreams but no nightmares...and as a side effect it somewhat relieves the pain I have from the wonderful chronic inflammation COVID gifted to me!

I can now walk about 3/4 of a mile with the dog again and not end up in bed the rest of the day...and I don't get short of breath.

I HATE that crash/overwhelming, incapacitating, leaden exhaustion more than anything! It has reduced my life to ~1/4 of what I used to be. It took 4 years to figure out what physical/emotional/cognitive things I can and can't tolerate and how much of each in a day or week. Tracking my activities and outcomes was the first step to understanding my current norm, then applying limitations and fine tuning my limits. And after that, well-life just happens and there are events that can't be controlled and all that goes out the window. Sometimes only my nose is just above water nd I can't catch up with life. Emotional therapy has helped coping with the feelings of loss, isolation, being misunderstood, and trying to stay on this side of hopelessness and being overwhelmed. Best to you as you navigate this!