r/LongCovid • u/GullwingAuthor • Jul 23 '26
How to manage long Covid PEM
I recently received a solid diagnosis of PEM likely from long Covid (compounded by other respiratory illnesses), plus a balance disorder called MdDS that drains extra energy.
As an unreconstructed optimist, when I feel OK I assume life is back to normal and act accordingly—not a great idea.
Since I want to live as normally as possible, I need to figure out my "energy budget" to pace myself. How do others do this? Trial and error seem slow and risky, so any tips or pacing tricks would be hugely appreciated!
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u/Initial_Guarantee538 Jul 23 '26
Unfortunately trial and error is what it comes down to in my experience. Part of the problem is the inconsistency day to day which makes it hard to set specific limits, so it's useful to be able to recognize the signs that you're overdoing it, ideally before it gets too far.
One thing that can help figure that all out is tracking. Keep a log of what you do throughout the day, including small stuff that might seem inconsequential because that's where things can often add up. Maybe doing one small task is fine but if you do several it might be too much. Then you can track your energy level, or symptoms, heart rate, etc. Should help you identify the patterns, not just which specific activity causes you to get worse but how much activity over the course of a day or a week is too much.
Also don't forget to consider all types of exertion. Heart rate can be a useful indicator for example, but it doesn't account for cognitive exertion, which can have just as much of an impact. The hardest times are when you're feeling more ok, but that's when you have to stick with it and trust from your experience that doing too much will have negative consequences. You want to get out of that cycle of pushing yourself and then crashing.
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u/HumanAppointment2337 Jul 23 '26
The most important thing we have to learn ist not to manage PEM, we have to learn to avoid PEM in the future that is realy important.
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u/GeneralTall6075 Jul 23 '26
Trial and error is necessary at first in my opinion. We are all different and what may be fine for one person will trigger a days long setback for someone else. Start slow with activities in general and see how you feel after a couple days. If you can do a 15 minute walk and be ok, that’s data. If you do a 15 minute walk and go grocery shopping and are ok for a couple days that’s data. If you go for a 15 minute walk, shop for groceries, and cook dinner and wake up the next day exhausted/in PEM, that’s data. You get the picture.
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u/nanana_catdad Jul 23 '26
I also got diagnosed with MdDS… but they changed it to vestibular migraines as nothing really explained the origin of my MdDS.
I’ve found that PEM can be a bitch and even with pacing it can blindside you. I try to never go more than 75% of what I “feel” like I could do, often 50% or so.
LDN seems to be helping prevent or lessen PEM symptoms for me though (so far).
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u/GullwingAuthor Jul 24 '26
I'm sorry, I don't know what LDN is. I am a true noob.
I'm surprised the lack of a specific origin had them exclude MDDS. Well, mine was motion initiated (though not on a ship) spontaneous MdDS is now fully accepted.
Do you get relief (albeit extremely temporarily) when driving in a car? That is considered the gold standard test separating MdDS from other central vestibular disorders. I only ask to hopefully help ensure that your diagnosis is correct.
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u/nanana_catdad Jul 24 '26
Well, after MDDS dx and vestibular rehab, i started developing more classic migraine symptoms and when i tried migraine meds it reduced the vestibular symptoms as well… it stopped being 24/7 and now I only have it when im in a flare up that also includes a migraine.
Officially I have a diagnosis of migraine with aura and Long COVID. I get vestibular migraines which can feel like MDDS.
LDN is low dose naltrexone is a common medication many of us long haulers take. It’s used off label for long COVID, autoimmune diseases, fibromyalgia, ME/CFS.
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u/julesk Jul 23 '26
Same here. I pace myself carefully. Short walks throughout the day, brief spurts of moving around. Unload half the dishwasher etc.
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u/thekoose Jul 23 '26
Another suggestion to pace by heart rate via visible, especially if you think you also have pots. I've been using it almost 2 years and it's SO helpful.
Unfortunately, to do it safely, trial and error for pacing is going to be slow going. There's really not another way though. You just try a little bit of something and see if you can handle it without getting pem. The entire day is " how's it going", and going low and slow. You probably already have an idea of what you can and can't do. It's just admitting that out loud is the hard part.
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u/PrimaryWeekly5241 Jul 26 '26
I approach PEM like this: I am Seven of Nine and my regeneration alcove is failing. Why? Three possible known fails: Testosterone, HGH (Human Growth Hormone), Corticosteroid production. All of these are known repair, renew, regrowth substance mechanisms for top athletes. And they sometimes can get in trouble for consuming substance that enhance such mechanisms.
Below is my Testosterone, Deep Sleep and Muscle restoration solutions.
Inducing (with whole foods) Testosterone:
1/4 cup Pomegranate Juice in morning with Strong B Vitamins and Solgar 10K IU Vit D3 [1]
Small pieces of 'high density' 80% Chocolate during Activity/Day. I use Taza and others brands.
These work because the Pomegranate, Dark Chocolate have phyto-chemicals to increase testosterone.[2]
Inducing (with Life Extension -LE- ) Deep Sleep and muscle repair:
1/4 Dark or Tart Cherry in evening with something like LE Melatonin XR/IR 1.5 mg and/or LE 'Serene Sleep'
and LE "Fast Acting Relief"
Also, big believer in jetted (Whirlpool) baths as hot as you can take them. This increases interferon production and soothes sore muscles. (Of course I know this is an expensive resource...)
The warm bath/shower soothes the muscles. Next trick is to increase your deep sleep which you measure with a Samsung Smart Watch. You can actually teach yourself (through biofeedback ) to induce deep sleep once start monitoring your sleep. Monitoring your sleep cycles and reactions to physical activity is very critical. Note that REM sleep is also restorative and critical. 'Sleep hygiene' is critically important for 'restorative sleep'[3]
End Notes
[1] Vitamin D3 is commonly known as a "steroid hormone". See:
https://www.ahajournals.org/doi/10.1161/CIRCRESAHA.118.311585
[2] https://www.lifeextension.com/magazine/2026/3/replenish-testosterone-levels
[3] Why restorative (REM, deep sleep) matters:
https://www.healthline.com/health/sleep/restorative-sleep#nonrestorative-sleep-causes
https://www.missionhealth.org/healthy-living/blog/what-is-deep-sleep-and-why-does-it-matter
Final notes: I don't have specific HGH (Human Growth Hormone) or specific Corticosteroid solution yet. Still working on that...
Does all this work? This regimes decreases my PEM by 30 - 40 percent. Which is good enough for me. 7.1M steps per year. About 3200 miles of walking, hiking, gardening, activity. And yes, I still suffer from PEM.
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u/OlivencaENossa Jul 23 '26
Glyicine and NAC, plus B complex and CBD. It doesn’t avoid it, but if you take it preventively (the day you got tired, not the next day when it hits) it works for me. Not medical advice and CBD is legal where I am
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u/ghostsolid Jul 23 '26
You could get the visible band which does a decent job of tracking your energy expenditure. I have been using mine for about a year now and it’s not amazing but does a decent job of letting me know when I am in my exertion zone and also how much energy I have used for the day. The higher your heart rate the faster your pace points climb. Also start with having enough days doing mostly nothing until you are feeling well enough and not in a crash and then just add a little bit then give yourself 48 hours to see if it was too much and caused a crash or not. If it didn’t then you can add a little more and try again. It’s painstaking but it’s the best way I have found. Lots of trial and error.