Exercise recommendations for long COVID are very confusing. Moving my body helps, but if I do too much, I crash.
Graded Exercise Therapy
Graded exercise therapy for long COVID patients is harmful.
“Graded exercise therapy (GET) is a form of physical therapy for the treatment of chronic fatigue syndrome (CFS) where physical activity is gradually increased over time, regardless of how the patient is feeling and ignoring any increased symptoms or new symptoms.” reference
I think of GET like a training program for a marathon. With no knowledge of the runner, you can specify a training program to gradually increase distance until the runner can complete a marathon. For healthy people building endurance, this can work, but for people with post-exertional malaise (PEM), it is very harmful.
The U.S. ME/CFS Clinician Coalition published a paper in Mayo Clinic Proceedings that makes a strong statement against GET under the heading “Outdated Standard of Care.”
In the past, CBT and GET were studied and recommended for ME/CFS on the basis of the disease theory that “the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviors (avoidance [of activity]),” leading to considerable deconditioning.53, 108 However, GET and CBT studies have been widely criticized for their methodology, inadequate tracking of harms, and a disease theory that conflicts with the evidence of multisystem biologic impairment.4, 108, 109, 110
Also, the US Centers for Disease Control and Prevention no longer recommend GET for ME/CFS, which has post-exertional malaise, just like long COVID. (reference)
Pacing
Pacing is the alternative to GET.
The U.S. ME/CFS Clinician Coalition published treatment recommendations that describe pacing briefly. On page 8 under “Post-exertional Malaise (PEM) and Fatigue” it says
Pacing of physical and cognitive activity to conserve energy and minimize post- exertional malaise (1). Once the patient has achieved a stable baseline using pacing, then very carefully selected and individualized increases in activity can be undertaken. The type of activity must be tailored for the patient’s level of severity and to ensure the activity does not trigger post-exertional malaise
The (1) refers to the most comprehensive pacing instructions I have found, https://www.cfsselfhelp.org/pacing-tutorial.
I want to emphasize that they recommend first establishing a “stable baseline” and then adding activity. The goal is to move, but not crash.
Orthostatic Intolerance
We have established that GET is bad and pacing is good, but then we get to the conundrum of orthostatic intolerance, which many long COVID patients have. The classic treatment for POTS is the Levine or CHOP protocols, which are a form of graded exercise.
In the U.S. ME/CFS Clinician Coalition treatment recommendations, page 8, under “Orthostatic Intolerance,” they recommend
Consistent, carefully tailored exercise, as long as the patient can do so without triggering PEM. May need to do exercise lying down, seated, or in water.
To resolve the exercise conundrum, Mount Sinai in New York developed a long COVID protocol for treating dysautonomia, which Dr. Jenna Tosto-Mancuso describes in this video: Part 4: Autonomic Rehabilitation | Long COVID Rehabilitation. I believe the Mt Sinai protocol is safe because it has a lot of safeguards in place to prevent PEM.
Also note that bed rest can cause orthostatic intolerance, so once at baseline, moving without triggering PEM is important.
My Experience
I have been very gradually exerting myself more, listening to my body along the way.
If I am recovering from a crash or trying to get out of a crash cycle, then I rest as much as I possibly can. This rest has a cost. It’s like putting a broken arm in a cast. The cast helps the bone heal, but the muscles will become weak. (reference)
Once I reach baseline (plus more extra rest), I start adding back activities. Consistent activities really help. That allowed me to very, very slowly increase the activities in measured increments over time. The three I used were
- shoulder exercises – I have exercises that help with a bad shoulder. Resting makes my shoulder worse, so these exercises I considered the highest priority.
- walking – I walk the same route there and back every day. This allowed me to start off at just two houses down and back and progress very, very slowly over many months to my full walk of 2.5 miles round trip.
- fishing – If I have energy, then I fish from the bank of a small pond. I use a timer to keep myself from staying too long.
Every day I track my activity and symptoms so I can detect declines and back off my activities when necessary.
I do not “push myself.” I often felt like I could do more and I have to restrain myself. If I am too tired at the end of the day, I know I did too much and do less in subsequent days.
My long COVID doctor told me to do as much as I can without crashing, so that’s what I did using those three activities. I was on medical leave and the remainder of my day was spent resting. I did almost no chores at home. The consistency really helped me get right up to the PEM wall.
If I have another activity or appointment, then I either skip or scale back my walk. I found that my total energy expenditure for a day is fixed. I can’t simply fit one more thing in.
This strategy did not work with disability insurance. The insurance company used my daily walks as evidence that I should be working. The idea that I was exerting myself up to my limit every day seemed lost of them.
Late in my recovery I also did the exercises described in the Mount Sinai autonomic rehabilitation video mentioned above. As I did the supine exercises, I found that it took less and less time to recover between exercises. Note that in the Mt Sinai protocol, aerobic exercise like walking is the very last step. I didn’t know better, so I did it first. Read more
Sometimes I would try doing a little more (or a life event would happen) and I would experience a setback. When that happened, I would rest until I thought I was fully recovered, then rest a little bit more. This might take a week or more. Once I was fully rested, I would start adding activities back.
I want to emphasize that I do not try to push through any symptoms. In other physical training I have done, I can push myself and build muscle and endurance. In this case that did not help at all. I have to be completely willing to scale back my exertion, even if previously I could do more.
Fear and Anxiety
Long COVID drastically impacted my life. I haven’t been able to work for months. I have missed many friend and family events. I did activities I thought were perfectly fine that sent me to bed for days or longer. It seems perfectly natural this could cause anxiety. If I do X, will I crash?
My doctor told me, and I have heard from other sources, that crashes are harmful and that repeated crashing can lead to permanent setbacks.
On top of all that, even modest research into post-exertional malaise will turn up stories of people who did too much and then became bed bound, sometimes for years. Remember that the people left on online forums are the sickest of the sick. Hardly anybody who recovers wants to continue participating in long COVID discussions.
The fear and anxiety this situation induces is real, but I don’t consider it an anxiety disorder (and my counselor agrees). Also, it’s important to get my body moving within my limits. Below is my experience dealing with all this.
First off, using my body helps with anxiety. Movement is a great stress relief, so if I can be active without crashing, that really helps.
Initially I used heart rate monitoring, but eventually I found it more harmful than helpful. On two notable days, I did almost the exact same activities, but my heart rate monitor said I did twice as much exertion on the second day. That fact alone was not helpful and just induced anxiety. In the long run it was better to just set an alarm so I only fish for 30 minutes instead of worrying about my heart rate. Read more
After more than ten months, I noticed that I was no longer experiencing PEM. It’s like a switch flipped. I could do more, but with it came a huge dose of anxiety from all the sources mentioned above. I was used to listening very carefully to my body for signs that I might be over doing it, but once the switch flipped, anxiety was causing weird sensations that could be interpreted as crash predictors.
I use little experiments to determine “is this a crash warning or anxiety?” I would not say I am “pushing myself,” but instead I say, “I’m going to ignore this signal and just try to do a little more.” By a “little more,” I mean enough to test myself, but hopefully not enough to cause a big crash. I have tried this many times previously and it resulted in crashes, but recently I have found that I can do much more. My theory is that my body has finally healed, but now my brain needs to catch up with my body.
Conclusion
I think moving within my energy envelope is important. I do not push myself and if I experience symptoms, then I back off.
The strategies above have helped. I still haven’t returned to work, but I think I’m just weeks away from that. If I experience a major setback or learn something important, I’ll update this page.
I think the most important thing is to listen to my body.