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

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🌈

@ann728, the post by @rinadbq that @law59 refers to can be found here: https://connect.mayoclinic.org/comment/844407/

It is in this related discussion:
- Managing Post-Exertional Malaise (PEM): What can help? https://connect.mayoclinic.org/discussion/post-exertional-malaise/

Here are a few other PEM-related discussions that may interest you:
- NIH to Open Clinical Trials for Long COVID Post Exertional Malaise https://connect.mayoclinic.org/discussion/nih-to-open-clinical-trials-for-long-covid-post-exertional-malaise/
- PEM What is your reaction? A new study from the Netherlands https://connect.mayoclinic.org/discussion/pem-what-is-your-reaction-a-new-study-from-the-netherlands/
- Pacing- what approaches have you found helpful? https://connect.mayoclinic.org/discussion/pacing-what-approaches-have-you-found-helpful/

Use different keywords, like exercise, pacing, etc. in the group search to find more.

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/

To kayabbott —

Thank you for the link to the NIH article about PEM. I read it with interest, for 2 reasons:

1. PEM is my primary LC symptom, I’ve had it for a year, now.

2. In a clinical trial in 2024, I periodically completed some of the same questionnaires that are discussed in the article.

I was happy to learn that resistance training doesn’t trigger PEM, for you. I’ll try it (cautiously).

— friedrich

I have had long COVID for 3 years. PEM is the worst and it is a big symptom I have experienced. I wake up feeling poisoned and that is inflammation and PEM. I have taken Vyvanse (ADHD) medication for many years and it does help. I do not know how it helps, biologically, but when I wake up, I drink a full glass of water, mixed with Emergen-C, take my Vyvanse, Cymbalta (lowest dose 30 mg.) and Gabapentin. Within an hour or so of taking my medications and hydrating, I am able to do some things. The issue is that this is everyday. I know that if I do too much, I will pay for it the next day. I have to live in the day and do what I can and try and not think too much about tomorrow. That being said, it is always in the back of my mind. You would definitely want to make sure you have no heart issues if you are taking Vyvanse. I know that people also take Wellbutrin for ADHD, however I have no experience with it. I got so depressed and hopeless, that my psychiatrist suggested the Cymbalta. It is an SNRI (serotonin norepinephrine reuptake inhibitor). It has helped. Hang in there!

5 years into Long COVID and my PEM has improved after 3 months titrating up on Low Dose Naltrexone. It does give me insane insomnia if I take it later than noon and I do have more vivid dreams but not nightmares. I can now walk 2/3 to a mile every day weather allows. I still tire by early afternoon (I usually get up at 7-8 am) and lie down for a while but no longer have to sleep. I am hopeful the LDN will continue to help me have even more energy.

Here is what researchers believe LDN does:

1. LDN increases the secretion of naturally occurring Endorphins (“feel good, runner’s high”). Endorphins relieve pain, give a happy feeling and reduce inflammation.
2. LDN increases the release of Opioid Growth Factor which works powerfully to reduce inflammation, auto-immune responses and tumor cell growth.
3. LDN reduces inflammatory immune cell signaling (Toll like Receptor-4). When these immune “look out cells” get excited, they signal the immune system to get overly busy, which can cause or worsen auto-immune and inflammatory responses. These “look out cells” are located all over the body, including the gut and the brain.
4. LDN calms glial cells in the nervous system. Glial cells make up over 70% of the immune system and can either protect nerve pathways or cause inflammation of nerves. We want our glial cells to remain in a calm and protective mode!
5. LDN increases dopamine levels. Dopamine is a neurotransmitter that makes us feel happy and rewarded, gives us energy and helps our brain solve problems. When dopamine is low, we feel depressed.

5 years into Long COVID and my PEM has improved after 3 months titrating up on Low Dose Naltrexone. It does give me insane insomnia if I take it later than noon and I do have more vivid dreams but not nightmares. I can now walk 2/3 to a mile every day weather allows. I still tire by early afternoon (I usually get up at 7-8 am) and lie down for a while but no longer have to sleep. I am hopeful the LDN will continue to help me have even more energy.

Here is what researchers believe LDN does:

1. LDN increases the secretion of naturally occurring Endorphins (“feel good, runner’s high”). Endorphins relieve pain, give a happy feeling and reduce inflammation.
2. LDN increases the release of Opioid Growth Factor which works powerfully to reduce inflammation, auto-immune responses and tumor cell growth.
3. LDN reduces inflammatory immune cell signaling (Toll like Receptor-4). When these immune “look out cells” get excited, they signal the immune system to get overly busy, which can cause or worsen auto-immune and inflammatory responses. These “look out cells” are located all over the body, including the gut and the brain.
4. LDN calms glial cells in the nervous system. Glial cells make up over 70% of the immune system and can either protect nerve pathways or cause inflammation of nerves. We want our glial cells to remain in a calm and protective mode!
5. LDN increases dopamine levels. Dopamine is a neurotransmitter that makes us feel happy and rewarded, gives us energy and helps our brain solve problems. When dopamine is low, we feel depressed.