Managing post exertional malaise

@athenaatkins

I would do a little bit each day.

You want to keep your body in motion. It doesn’t meet exert yourself.

But your husband is right in a small routine, ritual like with your dogs. You don’t want to cross over into lack of movement/joy which can bring on depressive like symptoms which is then hard to distinguish between real malaise and overall lack of body engagement.

This is why even after surgeries they encourage people to still be getting up and moving. Not so much for exercise but to keep depressive feelings away.

Thank you! I appreciate and agree with your insight. We will walk the dogs!

@athenaatkins Short story, I have suffered from LC since November '21 when I contracted it from my first (and last) booster. I have been through every test and Doctor in Charleston, SC figuratively speaking and went to Mayo Rochester's LC Clinic in August of '23. September '23 I was fully executing my 'Mayo plan' which on top of all the Doctor visits and testing there included 3 months of Nurse and PT coaching. With all due respect your husband is 100% wrong. Do not "push myself a bit". Before Mayo I did that on bad local Doctor advice and I was constantly in the crash cycle you describe. Mayo advocates "treating yourself like an injured athlete, you can't go back to the level of performance you were once at". You must find a level of activity that avoids the crash cycle, and be disciplined about it, because there will be days when you feel good and you will go 'woo hoo' and want to go do things beyond your capability and start the cycle all over again. Experiment with different activity levels where you do not crash and very slowly add to that level. Example, where I once was 45 minutes aerobic and resistance exercise 6X per week, I am now 10 minutes very low aerobic zone focused on leg strength, 10 sit-ups, 10 push ups, 10 squats. Very very very very slowly adding, 'feeling' for the boundary. Today I am better, not 100% better, but worst case I know how to manage LC and have a decent life going forward. I wish you well and I hope your husband isn't mad at me 🙂

I try to listen to what my body is telling me, unfortunately it doesn’t always communicate well 🙂

I do find I can walk a reasonable distance if I slow down and take breaks. Maybe go for the 15 min walk, but tell your husband that it’s going to take a half-hour, and have him carry a folding chair so you can sit if you need to?

I find it hard to take a break when I feel I “shouldn’t” need one. And it’s even harder if people around me think I shouldn’t need one. When have to walk with other people I tell them up front that I will be walking about half a normal speed, but that it’s fine if they want to go ahead, and I’ll catch up eventually. Then, when they start to get ahead of me I *do not* speed up.

Also, some people (including me) have found that taking Benadryl regularly helps with the exercise intolerance. I was taking 25mg four times a day for quite a while. Here is the initial report from the people who discovered this. You can also Google “Benadryl Long Covid” and you’ll get loads of results. https://www.sciencedirect.com/science/article/pii/S155541552100547X#!

There are also some ADHD medications that can help with fatigue. And there’s always caffeine!!!

LC is not like training for a 5K run, it is more like being run over by a train after a 5K walk. I got covid last March on a 7-day 350 bike tour. I normally bike ~7000 mi/year. The LC hit after covid, and I went from biking up to 80 mi/day to 5 mi on an exercise bike with a nap afterwards. My LC went away after 8 months. LC hits endurance and once you are depleted, the recovery is much slower than before. So, I would exercise in snippets (5 mi), rest for a while, then bike or walk a bit, and rest, and all at levels that would not trigger the LC fatigue (also termed PEM). On a happier note, LC doesn't seem to hit resistance training, so if your husband is fine with you lifting weights or other (nonaerobic) exercise then you can still keep your muscle mass and bone density until you are over LC. Make sure you get enough sleep and avoid stress; those hit LC as well. Food intolerances can be triggered too, so consider keeping a food log.

Sure agree with how you are managing to stay active! Self care and listening to your body, managing other people’s expectations and helpful advice. My experience mirrors what thousands of people post Covid infection report. I tried to do physical therapy twice as doctor thought it would help, and I was also thinking it would help. Instead that evening and next day or two after I would be exhausted, dizzy on the sofa, my joints more swollen and inflamed, wondering if I had the flu or a rebound of Covid. Now am dealing with two autoimmune diseases, Morphea scleroderma and PMR, that doctors feel was possibly triggered by Covid infection. I was in ER twice in the last two weeks with chest pain and heart arrhythmias. Doctor said he sees so many previously healthy and active people developing long term autoimmune problems after Covid. We know post polio, Epstein Barr, Lymes, Shingles are all the result of a viral infection, even many years ago, that can cause lifelong health issues. Covid appears to be following the same pattern.
I do some daily low impact exercises and stretching, gentle yoga, and rest as needed . No more pushing myself and ruining chance for more good days than bad.

Be over cautious. Do not listen to anybody (including yourself) who thinks pushing yourself a bit is good for you. It is easy to crash, and a crash can put you in bed for weeks.

I've had 7 serious relapses due to this along my journey. I was an endurance athlete before all of this so my inclination was to get back after hard workouts (mostly bicycling), after I would start to feel better. Now, I am getting the advice from my functional medicine doctor and another doctor that is in charge of a research study that I am participating in, to not push myself and to go very easy. They both say that walking should be the most exerting activity I should do.

Pushing yourself is absolutely the worst thing you can do. . . so is staying completely sedentary. You need to find the middle spot where you can do some activity without making symptoms worse. My daughter is struggling with this. She accidentally left her backpack in car 2 weeks ago and ran after the car to get it (about half a block). That short run caused such a crash that she hasn't been able to attend school since. Pushing yourself can lead to long-term worsening of symptoms!

My Stanford Clinic doctor said the goal is to avoid crashing because sometimes you crash and never completely recover. Hard to avoid crashing when your body does not let you know that you are doing too much. For me setting regular rest periods - at my worse 15 minutes rest for every 45 minutes up, - and limiting physical exercise to what I could do regularly without crashing, were both extremely helpful in staying within my limits.