Physical therapy protocol for long Covid

@debbiedsf
LC, CFS for six years. Wake up 3 to 4 times a night. Exhausted when I get out of bed.

Neurologist requested Sleep Study.
I failed the at home sleep study, so I was scheduled for in person hospital sleep study.

Sleep APNA - obstructive, central and mixed. Oxygen level drops to low of 77% - while I was on connected to the sleep machine. I’m also wondering if it might be lower without the sleep machine. Note: while I'm awake 93-97%.

Best wishes,
🍀

Just started with PT program with a group that says they have experience in fibromyalgia. I felt my recovery had plateaued and I was ready for PT and the symptoms of LC and fibromyalgia are close enough. Will see how it goes 🤞🏼🙏

My program is less about pacing as it is slow easy exercises, starting with breathing, then push ups against the wall, getting up and down from the chair and finally standing leg lifts (very slow in place marching lifting your knee up to your waist). it’s a 15 minute program. I understand even this is too much for many. I couldn’t have done it 18 months ago, but I also haven’t been experiencing PEM like I used to. 🙏🏻🤞🏻🤞🏻

Apologies up front for the late and lengthy reply. I started this reply a couple weeks ago, kept it as a draft as I wanted to get few PT sessions under my belt before I replied. Well, my wife told me it was time to break up with my physical therapist. I chose this location (had high marks in the area) as they said they dealt with fibromyalgia and since some of the symptoms are similar, they might be a good fit. The first negative sign was when I called for an appointment and asked who dealt with fibromyalgia and was told anyone could. Well, the therapist, a nice young guy who probably would be fine if I was recovering from surgery or an injury was hell bent on “graded exercise”, the core concept of PT, which most every study suggests is not usually recommended. He’d start me off with breathing exercises (most of which I was already doing at home) but would then go into muscle conditioning for 30 minutes. Went into a minor crash the next day following my first strength session. I had even sent him links to various studies (Mayo, Yale Medicine, UCLA, etc) including one from the American Physical Therapy Association which began with the statement “this is different from everything we ever learned”. He didn’t seem to put much stock in the studies, saying there was a lot of conflicting information out there. It was when he told me at my last appointment of a small study he “heard about” in China where they’d had some success with graded exercise I realized he was married to what he learned in school and had no clue how to address Long Covid or for that matter, even try to do some real research. He just seemed happy to be vindicated (though he didn’t actually show me the study). That was when my wife suggested it was break-up time. Honestly, I felt like I was doing better and improving more on my own prior to PT.

I wish I could tell you prior to PT, I had an actual recovery program of sorts, but that would probably be an overstatement. Like many I threw a lot of spaghetti against the wall; acupuncture, massage, therapy, chiropractor (still see him, though not sure it helps LC). Early on, most of my routine consisted of very short walks and a lot of resting. I bought an Apple Watch in part to track my steps because it was something to track as well as to monitor my sleep. Overtime my walks increased and my rest breaks, decreased, though often I would overdo it, walk too far and then pay for it with PEM. Up until about six months ago, I rarely drove much myself, instead relying on Uber. Without any real help from anyone else, I just slowly increased my walks and overall activity (helping with housework, very light yard work and overtime decreased structured rests, instead just going upstairs sitting in my office and reading or watching videos for a while. I feel like I have come a long way, but I also felt like my recovery had plateaued, which is why I decided to try physical therapy and see if I could continue on improving. I had been experiencing very little PEM, until the PT session. One note, my walks now have to be more deliberate and actually feel like “rehab” as my walking partner (13 year old rescue dog) passed away a few weeks ago. On some days I was over 8000 steps for the day and now I seem to be averaging 5000-6000.

One of my biggest changes that I truly believe helped in my recovery came from advice from one of my grown daughters. For the longest time I kept a meticulous journal of the days activities; how long I slept, what I ate, number of steps, precise symptoms, meditation (that may have been a plus) etc. and spent hours on the internet researching all the sites most here have visited. My daughter suggested that I stop journaling and doom scrolling and just get out and live my new normal. This made a huge difference for me. While I still check into this site every morning and look at a few entries that really relate to me, I have stopped documenting every aspect of this condition. I have good days and days where I have to just rest (not so much “bad days”. Back to my own “program” which frankly, is much more aligned with what you shared.

Anyway, that’s my update on “my” experience with PT and personal journey to date (24 months in). A LOT more than you probably expected or wanted 😉.

Apologies up front for the late and lengthy reply. I started this reply a couple weeks ago, kept it as a draft as I wanted to get few PT sessions under my belt before I replied. Well, my wife told me it was time to break up with my physical therapist. I chose this location (had high marks in the area) as they said they dealt with fibromyalgia and since some of the symptoms are similar, they might be a good fit. The first negative sign was when I called for an appointment and asked who dealt with fibromyalgia and was told anyone could. Well, the therapist, a nice young guy who probably would be fine if I was recovering from surgery or an injury was hell bent on “graded exercise”, the core concept of PT, which most every study suggests is not usually recommended. He’d start me off with breathing exercises (most of which I was already doing at home) but would then go into muscle conditioning for 30 minutes. Went into a minor crash the next day following my first strength session. I had even sent him links to various studies (Mayo, Yale Medicine, UCLA, etc) including one from the American Physical Therapy Association which began with the statement “this is different from everything we ever learned”. He didn’t seem to put much stock in the studies, saying there was a lot of conflicting information out there. It was when he told me at my last appointment of a small study he “heard about” in China where they’d had some success with graded exercise I realized he was married to what he learned in school and had no clue how to address Long Covid or for that matter, even try to do some real research. He just seemed happy to be vindicated (though he didn’t actually show me the study). That was when my wife suggested it was break-up time. Honestly, I felt like I was doing better and improving more on my own prior to PT.

I wish I could tell you prior to PT, I had an actual recovery program of sorts, but that would probably be an overstatement. Like many I threw a lot of spaghetti against the wall; acupuncture, massage, therapy, chiropractor (still see him, though not sure it helps LC). Early on, most of my routine consisted of very short walks and a lot of resting. I bought an Apple Watch in part to track my steps because it was something to track as well as to monitor my sleep. Overtime my walks increased and my rest breaks, decreased, though often I would overdo it, walk too far and then pay for it with PEM. Up until about six months ago, I rarely drove much myself, instead relying on Uber. Without any real help from anyone else, I just slowly increased my walks and overall activity (helping with housework, very light yard work and overtime decreased structured rests, instead just going upstairs sitting in my office and reading or watching videos for a while. I feel like I have come a long way, but I also felt like my recovery had plateaued, which is why I decided to try physical therapy and see if I could continue on improving. I had been experiencing very little PEM, until the PT session. One note, my walks now have to be more deliberate and actually feel like “rehab” as my walking partner (13 year old rescue dog) passed away a few weeks ago. On some days I was over 8000 steps for the day and now I seem to be averaging 5000-6000.

One of my biggest changes that I truly believe helped in my recovery came from advice from one of my grown daughters. For the longest time I kept a meticulous journal of the days activities; how long I slept, what I ate, number of steps, precise symptoms, meditation (that may have been a plus) etc. and spent hours on the internet researching all the sites most here have visited. My daughter suggested that I stop journaling and doom scrolling and just get out and live my new normal. This made a huge difference for me. While I still check into this site every morning and look at a few entries that really relate to me, I have stopped documenting every aspect of this condition. I have good days and days where I have to just rest (not so much “bad days”. Back to my own “program” which frankly, is much more aligned with what you shared.

Anyway, that’s my update on “my” experience with PT and personal journey to date (24 months in). A LOT more than you probably expected or wanted 😉.