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Post Exertional Malaise with Long Covid: How do you cope?

Posted by bettyjackson @bettyjackson, Dec 26, 2025

I have always been the family "Energizer Bunny". But this was my last family gathering I can host.
5yrs of fighting long covid, since Spring 2020. Always determined I could be regular self by grit. Christmas Day I couldn't even get dressed. I didn't care if PrimeRib got cooked or not.(Which I can't smell or taste anyway) I've jumped into almost every suggested idea on this site..... supplements, etc., Skeptical relatives still don't understand. I was @ Mayo LongCovid clinic 4yrs ago, my Primary Doc is sympathetic, but Standard_Of-Care simply doesn't work for this weirdo viral invasion. Only coping strategies offered.
The whole world, millions of people , affected, but still no cures???!!!

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

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fse1973ap | @fse1973ap | Jan 5 12:49pm
In reply to @krutsala12 "@db72 does anyone understand why Naltrexone is helpful for lc? How do you convince your doctor..." + (show)
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@db72 does anyone understand why Naltrexone is helpful for lc? How do you convince your doctor to prescribe when it is clearly formulated for addiction issues?

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@krutsala12

Here is the research to show your doctor, it is long known now that LDN helps. https://pmc.ncbi.nlm.nih.gov/articles/PMC10862402/

It is Low Dose Naltrexone that is helpful for LC (under 10mg), so not Naltrexone in the high doses that help with drug use.

"restoring TRPM3 ion channel function and reestablishing adequate Ca2+ influx necessary for homeostatic cellular processes."
https://www.frontiersin.org/journals/molecular-biosciences/articles/10.3389/fmolb.2025.1582967/full

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amyqk | @amyqk | Jan 6 12:20pm
In reply to @diverdown1 "It is extremely frustrating. I can completely relate. The PEM that goes along with this damn..." + (show)
Profile picture for diverdown1 @diverdown1

It is extremely frustrating. I can completely relate. The PEM that goes along with this damn virus is the worst. Another piece is the people that do not believe or understand it. I can have a good day, where I can function and then there are days where I am only able to lie on the couch. I was always very active and in the best shape of my life when I got hit with Long COVID. Going on 3 years and 5 months now. I take medication that helps me function, but even then, there are days when I am just unable to do much. Have you heard of the web publication the "Sick Times"? Also there is a website that I follow. I will put the links in this comment. Hang in there. You are not alone and even hearing that I feel alone sometimes, but I do get so much from this site from people like you.
https://thesicktimes.org/
https://recovercovid.org/

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@diverdown1 Thank you for those great resources! I was diagnosed with LC in the summer of 2024. I've found some medications help, but the constant source of frustration is not learning to pace myself!!! I felt great this past Sat and Sun., ran tons of errands and then I crashed on Monday -- could barely function. Today (Tues.) I'm a little better but I'm trying to run a business -- selling advertising and publishing a magazine -- and it's hard to work when my energy levels are so unpredictable!!! Does ANYONE on here have specific suggestions about pacing??? Ex: work for 2 hours, rest for 1, etc.? Or does this "damn virus" (as you stated above) affect all of us so differently? Is pacing totally trial and error? I'm open to ANY suggestions from ANYONE!

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Lucy | @welchllb | Jan 6 5:04pm
In reply to @vostie "@krutsala12 Naltrexone helps regulate the immune system at low doses and for me, it has taken..." + (show)
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@krutsala12 Naltrexone helps regulate the immune system at low doses and for me, it has taken away all of the pain caused by the LC inflammation...and gives you a little burst of energy about two hours after you take it. There is plenty of documentation for your doc on low dose naltrexone as it is being used for long COVID, chronic fatigue, myalgic encephalomyelitis, fibromyalgia, multiple sclerosis and Crohn's disease. ..to name just a few.

Here is a link to just one of multiple studies your doc can peruse:
https://pubmed.ncbi.nlm.nih.gov/38267326/

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@vostie
Oh my gosh, there are so many ways to address LC. Even though, LDN helped with energy at 4.5 mg taken in the morning, I still didn't feel quite right - weird dreams, woozy sometimes, etc. I'm willing to try anything right now. Next up L Proline and then, L-Arginine. Confused!!

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diverdown1 | @diverdown1 | Jan 7 7:14am
In reply to @amyqk "@diverdown1 Thank you for those great resources! I was diagnosed with LC in the summer of..." + (show)
Profile picture for amyqk @amyqk

@diverdown1 Thank you for those great resources! I was diagnosed with LC in the summer of 2024. I've found some medications help, but the constant source of frustration is not learning to pace myself!!! I felt great this past Sat and Sun., ran tons of errands and then I crashed on Monday -- could barely function. Today (Tues.) I'm a little better but I'm trying to run a business -- selling advertising and publishing a magazine -- and it's hard to work when my energy levels are so unpredictable!!! Does ANYONE on here have specific suggestions about pacing??? Ex: work for 2 hours, rest for 1, etc.? Or does this "damn virus" (as you stated above) affect all of us so differently? Is pacing totally trial and error? I'm open to ANY suggestions from ANYONE!

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@amyqk Unfortunately, I am not sure. I have no idea when it will hit me. For instance, I did quite a bit on Monday and figured I would feel awful yesterday. I did have some swelling in some of my joints Monday evening, and I took 800 mg of Ibuprofen in the evening. I felt okay yesterday, however this morning I woke up with the poisoned PEM feeling. I do not know if there is any way to tell...that is so frustrating. I know that if I drink a lot of water, I feel better. If I stay away from salt and sugar, I feel better, but the PEM and fatigue hit randomly. I hate it. I know your frustration. I had to quit my job in the Fall of 2022. I had started working on my M.S. in Social Work via online through the University of Tennessee before I got sick. My hope is that I can work remotely. I am sorry and share in your frustration. Hang in there!

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vostie | @vostie | Jan 7 10:29am

After 5 years of long covid, I just don't push myself any longer. I break daily tasks up - prep food for dinner at lunch time and then rest for 1-2 hours and then cook...don't wash my hair and body the same day and plan nothing on a day I have to go to an appointment, etc. If am am careful staying away from sugar, I can walk 2/3 of a mile first thing in the morning and have no PEM. Walking that far later in the day or evening will result in PEM.

I have lots of covid food allergies...so that can also make me feel awful but I know what those foods are and, if I choose to eat them, I know I will feel poorly.

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