Any experience with Post-exertion Malaise (PEM) symptom of Long Covid?

Hello, I have the same. Long Covid with PEM. I tried to find either an OT or PT that could help, but to no avail. All of their suggestions were far too aggresive and I ended up worse after 6 weeks of PT than when I began. So I actually went on SciSpace AI and asked for a plan for each situation of this condition: when I have a flare up, when it calms a bit etc. How do I maintain some muscle and some stamina even though I can't exercise or do much. Also to show me a plan for going to work, which for me is a very physical job I've had to cut way back on. And honestly, I've recieved the best and most gentle plans and suggestions, better than the professionals I tried. This is an AI that looks at scientific research and compiles it into responses. I found it through my free Chat GPT site. I hope this helps.

Hi @ann728. Sure you will find great suggestions here to fit your individual needs. @rinadbq on feb 28, 2023 posted her reality and pacing techniques I saved and I think many found helpful and inspiring. Sorry I dont have area it was under🙃 Hopeful search by her username/date leads you to it. Quickest healing journey to you🌈

Thank you. Thank you. I immediately went on line for the reviews. I did not see a lot of new information but I will continue to return with new questions. A wonderful find. I’ll share with you a book that my social worker just recommended to me, Mind Your Body, a program to release chronic pain and anxiety by Nicole Sachs. Thanks to a comment here, I ordered Visible, an activity monitoring program for illness. I need help knowing how far to push without the crash. I was in bed for days with the last crash. Take care!

I have PET from ME/CFS that developed from having Long Covid. My doctor set me up with physical therapy to slowly and carefully build strength, acupuncture, ADHD medication for energy and brain fog, and a one-on, two-of approach to tackling tasks.

Thank you for your response. I am curious, how does the ADHD medication help with energy? I will definitely check into acupuncture. I am working diligently to figure out an activity level that allows me to manage my life without a crash. The last crash was tough….
Thank you again, you have offered great suggestions for me to consider with my physician.

With PEM, mostly pacing, getting enough sleep (including naps), eating well (covid can cause new food intolerances), and finding fun distractions from LC. I got covid in March of 2023, was vaxed 6 mo. before, but exposed to a high viral load. LC was mostly PEM and cardiovascular. I had to step back from aerobic exercise until the heart issues ended, about 8 mo. It is helpful to keep a journal, to see what level exertion causes you to bonk on that or the next day. Before, I biked +100 mi/week, now I take short rides and walks, with a lot of breaks to control my level of exertion. Resistance training doesn't cause PEM in me, so I lift weights and other strength building. One possibility with PEM is that the virus makes changes to the mitochondria, the energy centers of cells. https://pmc.ncbi.nlm.nih.gov/articles/PMC9383197/

Hello, Everyone -
As many of you already know, I am 83 years old and 4+ years post covid. I take *a lot* of supplements; something to support every system in my body and everything helps just a little bit. I, too, suffer from PEM and Fatigue when I don't rest enough.
One of the things I do is Yoga Nidra meditations 1 to 3 times a day. I use the free YouTube channel of Ally Boothroyd. And, believe it or not...I *do* get some energy from them.
I am adding NADH to my daily regime. I've ordered it and it should arrive today or tomorrow. It's supposed to help with energy and mitrochondrial support. It's the mitrochondria that provides our cells with energy so I'm always looking for ways to support it.
For more *really helpful* information of all types, I encourage you to visit the free YouTube channels of Gez Medinger (he's one of us and 5 years post covid) and the channel of the Bateman Horne Center where you will find a lot of medical information. "Broken Battery" is something you can send to your concerned friends and relatives to help them understand.
My best to all,
Pam

Thank you. Walking has always been my exercise-5 miles per day for 5 days per week for over 20 years. I tried walking last week…wonderful to be outside…bit over half mile and by afternoon, I was in bed with debilitating fatigue and there for three days. I am learning. I think I have three levels of fatigue. Started a journal this morning….sleep remains a problem for me even with meds. Beginning a pacing system as well. Thanks again, it so helpful to hear from others.

If your covid and LC are fairly recent, then much of the beginning is a waiting game until you body has healed enough that you can slowly ramp up exercises/pacing. If your insurance offers a sleep study, that can help retraining with sleep. LC is a nasty disease(s) and I hope you heal well. LC can have common symptoms with chronic fatigue syndrome, at least in the beginning.

I got a lot of help from Gez Medinger, a journalist who got Long Covid early in the pandemic and started reporting and creating YouTube videos about LC. He has great videos about PEM - search "Gez Medinger PEM" on YouTube and you'll find a whole bunch of videos.

He has worked with Dr. David Putrino at Mt. Sinai Hospital in New York, who's an expert on LC and especially on dealing with PEM and pacing. He has also written "The Long Covid Handbook," with Professor Danny Altmann, a professor of immunology at Imperial College London.

Gez seems to explore absolutely EVERYTHING to do with Long Covid - every symptom, every theory for what causes our symptoms, every possible treatment option (including medical, homeopathic, nutritional, alternative . . .), you name it. But his videos really helped me understand what PEM is and how to address it.