I know two people with long COVID who were helped by physical therapy, but PT set me back several months.
I want to be clear that I am not discouraging anyone from going to physical therapy (PT) for long COVID. I just want to share my experience so other people can look out for similar problems.
I was sent to a physical therapist who was trained to treat people with long COVID.
Before Physical Therapy
When I started PT, I was working (just barely) 4 hours a day, split between morning and late afternoon. That schedule was too intense for me, so I was planning to go on medical leave to give me more bandwidth for PT.
Every morning I was walking 2.5 miles. I was also able to fish for hours standing from the bank.
However, I had to take two naps a day, was going to sleep 2 hours earlier than normal each day, and didn’t feel that I could do any social engagements at all. I was also spending every weekend in bed.
I was clearly way outside my energy envelope, and I explained that to the therapist. I assumed once I stopped work, I would have more energy for PT.
During Physical Therapy
At my first appointment, I gave an extensive history. I was given tests that seemed very easy. I was seated in a chair, and asked to get up, walk around a cone, and sit back down. Then I did a sit-stand test. Finally I rode a recumbent bike for 6 minutes, increasing the resistance a couple of times.
My heart rate was not elevated significantly, but when I was riding the bike, I had a feeling in my head I call bobblehead which is a precurser to a crash. I left the appointment crashing and went home, drank electrolytes and got in bed. I think I was able to ward off a larger crash by that short rest.
The second appointment we started following the CHOP protocol. On the table I did hamstring stretch, quadricep stretch, bridges, straight leg raises (which aggravated my hip), and clamshells. Then I road the recumbent bike for another 6 minutes and crashed again.
Third time, same story. Same exercises minus the straight leg raises, even lighter resistance on the bike and crash.
Fourth visit I did the four stretches and instead of the bike did simple standing leg movements at the barre. Crash again.
At the same time I was doing this PT, we had the Christmas holidays and I had some significant family issues to deal with.
After the fourth visit, I knew I was tired because I went fishing for an hour and felt like I had been run over by a truck. The next day I went on a slow walk and had to turn around after 2 houses. I stopped PT at that point.
This all led to weeks of feeling bad. After about two months I was able to complete my normal 2.5 mile walk for the first time. After doing that about five times, I decided that a walk that long is outside my current energy envelope and had to scale back. It took about five months to get back to my previous energy level.
Surprise
This experience really surprised me. When I was doing the exercises during PT, I felt perfectly fine until I had the bobblehead feeling on the bike. Nothing felt difficult or strenuous.
There was something about the particular stretches, the bike, the length of the session, or something else that sent me through The Wall.
What Went Wrong?
I was aware that graded exercise is harmful to long COVID patients, but these exercises seemed like nothing.
This talk by Clayton Powers, DPT, who is associated with the Bateman Horne Center, seems to explain what happened to me. He described post-exertional malaise (PEM), which I was familiar with, but he said the CHOP protocol is harmful to patients with PEM because it is a form of graded exercise. My experience is consistent with that. Powers recommends just pacing daily living activities as a form of rehab.
Later I found a continuing medical education course hosted by Mount Sinai in New York in which Dr. Jenna Tosto-Mancuso describes their PT protocol. This protocol was similar to what I was given in PT, but much gentler. Six months after my initial PT experience I was able to follow this protocol at home and saw a significant improvement in my symptoms.
A long COVID physician I talked to about my PT experience said my activities should have four parts:
- Avoid crashing
- Avoid jumping or other high intensity exercises
- Avoid a lot of positional changes (like moving head up and down)
- Find an aerobic exercise that can be tolerated (see discussion below)
Well clearly we did not avoid crashing. Also, when I showed up, I was already doing at least 45 minutes of aerobic exercise every day. But there’s more than that.
The key with PEM is pacing and I found that showing up at scheduled appointments made pacing more difficult. I have to pace myself hour-by-hour. Before one of the appointments, I helped my son buy a warm coat he needed for his new job. Normally I would just go home and rest, but instead I dutifully headed to physical therapy, which was really not in my energy budget.
When I was recovering, I also learned that just going to the appointments is exertion. My wife can’t medically drive. She had to go to her own PT and I was feeling good, so I drove her instead of using Lyft. I drove there, sat in the waiting room, and drove home. On the drive home I was having brain fog, which is a sign I pushed myself too much. Simply driving to the appointment and not doing any exercises at all is a form of exertion that has to be accounted for in my daily pacing.
It’s also possible that the PT environment itself induced stress that I don’t have when walking or fishing. The clinic had five PTs who were all seeing 1-3 patients at once in a big room. In addition to being self-conscious about that, at least once another patient was coughing significantly. The patient said the exercises induced the cough and they put a mask on her, but that was unsettling for somebody trying to recover from COVID. Another time I arrived and the staff was greatly reduced and everyone there was now wearing a mask because, “something was going around.” I know that emotional stress can trigger my PEM, so I suspect the environment was also a factor.
In the Mt Sinai autonomic rehabilitation protocol, the first four weeks is just breathing exercises, which would be a great way to make sure a patient can get to the appointment without crashing. Once the exercises start, you do an exercise for 30 seconds and then rest for 2-3 minutes to make sure you get back to baseline. Those two strategies alone would have been much safer for me.
Aerobic Exercise
I have seen multiple references online, including the Dr. Powers video above, to avoiding aerobic exercise with long COVID patients. My experience is that when I am in a crashed state, I have to avoid aerobic exercise. However, once I get to the place where I am resting nearly all the time and feel good, then I need to very slowly initiate aerobic activity. For that activity I have to do something that seems ridiculously easy and then very, very slowly ramp up. I increase only in increments of about 10%, which I have to do for about 3 days in a row without significant symptoms before increasing. If I start to feel bad, then I drop back to a lower level of activity that I can tolerate. Read more
If I can get my body moving in a way that doesn’t trigger crashing, then I feel much better.
Conclusion
Physical therapy for long COVID needs to be approached cautiously.
When pacing, the travel and environmental triggers need to be taken into account.
Most of all, crashing has to be respected. Otherwise the patient can end up like me, taking months to recover.