DO NOT exercise with long COVID

This is a clip taken from the Live-stream held on Physics Girl for the Open Medicine Foundation. Kyle was lucky enough to speak with Dr. David Putrino to learn more about the role that exercise plays in the bodies of people suffering from Long COVID.

Creator/Host: Dianna Cowern
Editor: Levi Butner

[racpa]

Took me 2 years to go to the gym, be good at my job, help out around the house, and not sit in a dark room. And I’m one of the lucky ones. Wishing some my good health on the Physics Girl.

[cerilious]

This is so important for people to understand. Don't push people if you don't fully understand what's ailing them!

[cmdrenfuego]

As someone with Chronic Fatigue Syndrome, this is very good advice for people with long COVID or ME/CFS. If you exercise and then crash, you must stop exercising. Every time you crash, you make it a little bit worse.

For those who aren't familiar with the term "crash": it's when you become so exhausted that you can't do anything besides rest. It typically lasts a few days, or maybe even weeks. The tricky thing is that crashes don't come on like tiredness from exercising where you are tired right away. Typically they happen a few hours to a day after you overdid it. For me, I would crash and then feel tired and rest a lot. Then I'd feel better and go back to exercising. And I would feel fine after exercising, tired, but just normal tired. But the next day I would be totally wiped out. And the cycle would repeat. I didn't realize what was happening until I saw a doctor who specializes in ME/CFS.

So what should you do? Rest, a lot. Then very carefully start figuring out your energy budget: that is how much you can do without crashing. Once you know that, stick to it as much as possible. The problem for people with long COVID and ME/CFS is that you can't go until you feel tired: by the time you feel tired you've already exceeded your energy budget and you'll likely crash. You need to learn how much you can do and what your warning signs are. For me, my warning sign was, paradoxically, feeling not tired. I would have a day where I would think "I'm feeling pretty good, not too tired" and the next day I'd crash. So I learned that as soon as I had the thought "today is a good day" that meant it was time to shutdown and rest.

Once you've restructured your life around your energy budget and you're not crashing much (<1 per month), you can consider raising your effort level as a test to see if you're doing better. For most long COVID/ME/CFS sufferers, this probably isn't what you think of as exercise. It's more like doing a short walk, or maybe a few minutes of extra chores around the house. For someone with as low an energy budget as Dianna that might mean sitting in a char a little longer or brushing your own teeth.

Hopefully, someday there will be a cure, but until then rest is the only proven option. Much love to Dianna. I hope you feel better (even if just a tiny bit) soon.

[travisborlkd]

Apologise for the comment the previous video. I was uninformed about these severe cases. Wishing you all the best!

[forecaster]

Imagine seeing someone so unwell they're unable to even talk and you go "yea you should go for a run"

[FloridaForForever]

Praying for you Diana. I have Lupus, MS & Stiff body syndrome...what you are saying IS the truth...every time I go for a 10-15 minute car ride to get to doctors and back, I am the same as your Dianna, for days, and I have had 5 spine surgeries, so now the doctors come visit me...all I can do now is the pc, sometimes I can sit n sew...my symptoms come ad go...I have figured out I pay for it if I have ANY salt, flour or sugar.

[rosebeach]

Please make a note that PEM doesn’t just affect people with Severe illness. Mild and moderate forms of CFS/ME are also greatly impacted by PEM.❤

[ssadie]

This is what I discovered going through my own journey. But how I would have loved to have this video to show professionals and my family. I was pushed to move and told to go to physical therapy, when I couldn’t even process sentences. They said I was just depressed and needed to go on more walks and go outside.
My doctor said exercise is always recommended- even after asking if she was familiar with CFS. This is powerful and important information. Thank you for sharing on your platform. You are making a difference❤

[jebjim]

I hope you continue to make progress. My eyes will tear up when I watch the next video with you, like it was before, talking normally about curious and cool science.

[EnCroissant]

Long COVID took my best friend from me. 30 years old. I'll always remember his mom's hug, and how she sounded when she was crying. Nothing in this world is more unjust than a parent losing a child.

[susanwindley]

As a rehab therapist in a residential rehab/skilled nursing setting (and as someone who has long covid myself) we saw this a lot during the height of Covid. We were told to focus on strengthening and reconditioning to bring patients back to their previous level of ability. With some it worked, with some patients, that absolutely backfired. Overdoing activity in therapy on one “good” day would knock them out for the next 2 days where they couldn’t do anything. I finally had to quit my job because I was getting weaker and weaker. I rested for over a year. I am finally able to work three half days a week. It takes me 2 days to recover in bed from that. Then I have 2 days I can run errands or do a few things around the house before I go back to work. On work days I stay in bed except for getting ready and working. It’s not what I thought my life would look like in my early 50s.

[jaredrandall]

I had long covid but not nearly this bad. Nearly two years of inability to exercise without paying for it with a week or longer recovery. Got through partly by sleeping whenever and for however long my body told me. Sending recovery energies for Diana 🕊️🙏💙

[weholmes]

Thank you for explaining this. And thank you for all you do to support her. Sending much love! ❤

[usernameONBEKEND]

I've learned so much about pem and long covid. Thank you Kyle, thank you Diana. A friend of mine has ME and I could share this with him. I wish you a speedy recovery, although I know it will take years but i keep hoping something is found soon. ❤

[lj]

TY for sharing this. Long covid has affected someone I know and there's so much confusion, misunderstanding, and inability to empathize. Worst was watching her not getting better in so many ways.

[hermancharlesserrano]

COVID fvcked me, for three weeks I was like an 90 y/o; it’s taken the year and a half since to get up to managing half my old exercise routine, and I simply can’t push myself hard because I feel like I can’t get enough air into my lungs.
Deniers are aholes, they have no clue! I hope Diana finds a path back to some version of OK ❤️

[norawheeler]

This is definitely true. My daughter had chronic fatigue for about 8 years 5th grade all through high school. When she would start the school year she could go for 4 days in a row and then within a month she could only make it about 2 days a week and then it would take her the entire next day to recover. She ended up not being able to attend high school. Being young she had a lot of things she was always active with and then she got older and gave up some of the more strenuous things she was attempting to do she did improve significantly and then she went back to being pretty close to normal now.

[IrinaGreenman]

This video is vitally important! I have lived with some degree of PEM for nearly 20 years now, and I have never until now had a quick and clear resource I could hand to people in order to explain my exercise limitations. I know I'm not the only one, because I'm not even the only one in my social circle anymore. This video may very well save lives. Kudos to you!

[rklein]

Since the universe isn't about me I just wanted to say there are millions of people who are thinking about you Diana and sending positive thoughts your way. Please get healthy, you can do it. 🎉

2 years post COVID. I do too much and then crash. I thought I could brute force it back to health. I really can't. It's torture because I'm such an active person..