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

Posted by sammy47 @sammy47, Apr 16, 2023

What can help Post Exertional Malaise crashes that is common with Long Covid same as with ME/CFS?

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denise | @trnrmom1 | May 11, 2025

i'm right there with what you just wrote and at 78 yrs. of age it's difficult to accept that we're no longer who we were because of covid as well as our age. covid has been a life changer and i spend a lot of time in my head as well as researching what might help. some moments are better than others in trying to accept the new/yet old me, esp. when i look good on the outside and i've given up trying to explain myself and health issues to others who usually don't understand....incl. drs.

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bmekdeci | @bmekdeci | May 11, 2025

I was diagnosed with chronic encephalopathy and immune deficiency in 1984 by two immunologists. This diagnosis later morphed in the ME/CFS. My earliest symptoms were horrible headaches; head ringing and reactions to all kinds of meds, chemicals and foods. I also had a lot of infections and reactions to the antibiotics used for them. The doctors put me on an orphan drug from Germany which was a type of anticoagulant and transfer factor. When these doctors retired I went to see Dr. Paul Cheney, who was the "guru" of CFS at the time. He constantly tried new treatments and eventually developed something called cell-signaling gels which are somewhat like stem cells, but in cream form. Using his gels, I was able to lead a relatively normal life as long as I paced myself carefully balancing working; traveling, a little golf and painting. Just before Dr. Cheney passed away two years ago, he recommended that I use a product called Nexavir made by the Nexco company. It is an old antiviral that used to be called Kutapressin. It is now available in cream form and available without a prescription. The company rep said they are having luck with it in Long Covid as well as ME/CFS. I got Covid twice in 2022-23 and had subsequent heart, blood pressure and balance problems on top of ME/CFS. I believe the Nexavir has helped me crawl out of this pit of misery, but it is not
a cure, just a very useful treatment. My heart and bp problems are much better and I am working on balance which seems to be improving also.

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diverdown1 | @diverdown1 | May 12, 2025
In reply to @rinadbq "I HATE that crash/overwhelming, incapacitating, leaden exhaustion more than anything! It has reduced my life to..." + (show)
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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!

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I, too have found help through therapy. I am going to start tracking what I can and can not tolerate. Thank you for the post.

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law59 | @law59 | May 12, 2025
In reply to @rinadbq "I HATE that crash/overwhelming, incapacitating, leaden exhaustion more than anything! It has reduced my life to..." + (show)
Profile picture for RMS @rinadbq

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!

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Hi @rinadbq. Once again your perfect word of “hate” in the way our lives are so changed is more appreciated than words can say! Truly hope you the quickest healing possible with all you have helped and continue to do for so many🌈

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sandtoes | @sandtoes | May 12 11:19am
In reply to @rinadbq "I have been experiencing this for >2 years and have found that pacing myself is the..." + (show)
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I have been experiencing this for >2 years and have found that pacing myself is the only way to prevent/lessen the degree of crashes. PT,OT,SLP was the biggest help in identifying why I can feel so great, charge forward in my life, then am in excruciating pain with overwhelming & incapacitating exhaustion for 2 days after.

I started with a simple spiral/composition notebook & wrote down everything I did in a day on one page:

Sleep: could I fall asleep, stay asleep, up frequently? Do I feel rested on waking? Did I get hit with exhaustion at 10am and have to go back to bed. Do I need to nap during the day? When did I start feeling tired during the day. What time I went to bed.
Cognitive/Brain work/Thinking: making plans for the week, managing personal finances, work emails, grocery list, planning-social events, travel, train schedules, driving directions, legal work, packing & travel, appointments, reading, puzzles
Physical work: grocery shop, errands, gardening, gym, walking, laundry, meal prep/cooking/clean up, cleaning up the home, wash/dry/set my hair, PT, walking the dog.
'Crash' episodes: what time of day, how long, what it felt like

Next to each activity I mark whether it is Cognitive or Physical, and time spent doing that activity.
On the facing page of the notebook, identify specific symptoms you had during the activity: breathing was harder, coughing, had to stop the activity, fast heart rate, dizzy, off balance, exhaustion, muscle pain, headache, nausea, difficulty concentrating, memory, vision changes, depression or anxiety.
I could then see where my energy was being used. I am now at a limit of 2 hours of physical work and 2-3 hours of cognitive in a day. I know I will crash when I go beyond this.
I do simple meal prep/cooking in one day along with laundry but no thinking work so Im not cooking every day. I count that as a workout. I shower, do my hair, pick out clothing & accessories the day before an outing and do nothing the day of so I have energy to enjoy. My house is not immaculate, just picked up. I get groceries delivered. Only 2 appointments in a day. I use a timer on my phone to help pacing my activity.
My long-haul symptoms have not improved-my time management and pacing has, and that has made all the difference in the world. Of course I still have crashes, but the more I stay in my own limits, the less frequent and less severe they are.

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@rinadbq Thank you for all your input here. I had been pacing pretty well for the last couple of years in much the same way as you. A few weeks ago, we drove across the country to visit our daughter. Had to "push through" many days to get here. Also went up in altitude 5200 feet. Three days in, I had the biggest crash I ever had. Was walking out of the bedroom and it was like someone sucker punched me on the side of my face. Hit the door with my face and went down fast and hard on the floor. ER for the day. Extreme nausea and vertigo. 5 days of being out of it in a dark room. I'm now 2 weeks out and just now moving around without holding on to walls.....DON"T PUSH THROUGH. If you are suffering from long covid and especially long covid with meniere's , please look up PEM and PEM with meniere's. We are still facing that 4 day drive home and when we get back, I'm back to pacing the way I was doing it. Take care folks. Be kind and patient with yourselves.

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