I want to talk about the hot button topic of exercise and #LongCovid. I had an interaction with a doctor recently and when I said I had long covid, she said I should be on a graded exercise program to "start healing." The thing is, I have been getting better. 1/
In the last 2 months, I've been able to do some VERY light movement and it isn't sending me into a crash (yay!). I think doctors and the public see me doing a bit of exercise, and they think that's why I'm improving. And yes, it is certainly helping me 2/
build back some of strength that I'd lost being stuck in bed for so long. But, until I had a basic level of health, all exercise did was send my body into a full on crash, and I mean stretching for less than a minute would put me in bed for a day or two. 3/
It wasn't the exercise that started my healing process. It was some level of healing that started my ability to exercise. Without that baseline of health, exercise actually did harm to my body. There's very strong evidence that mitochondrial function is impaired 4/
in Long Covid (and other post-viral illnesses). Using any form of energy can literally deplete our body's energy stores forcing our system into emergency mode, reducing our energy expenditure to basic functions. This is why I literally couldn't even think, let alone move, 5/
when I crashed. And let me tell you, I tried! I spent weeks desperately trying to exercise my way out of Long Covid. All it did was set me back months. I did every protocol and I was determined. Turns out you can't exercise yourself out of mitochondrial dysfunction. 6/
My body's cellular storage of energy was gone and I had to rest to recover. This is why blanket graded exercise programs for Long Covid (or ME/CFS) are a terrible idea. Doctors need to make sure we are at that baseline before we try to exert ourselves 7/
even the slightest bit or it will set us back rather than lead to improvement. I do think it can be difficult to know when it's the right time to try, but at the bare minimum doctors need to listen when we say that any activity makes things worse. 8/
Now that I'm able to move more, the exercise is absolutely helping my body. But please, if you are starting the #LongCovid journey, listen to your body and do not push yourselves to exercise if it makes you feel worse. If any doctor tells you that exercise is the answer, 9/
run away because they are not up to date on the latest Long Covid and ME/CFS research. Radical rest allowed my body time to heal to get to the place where I can now actually use exercise to improve my health, 10/
but I wasn't in that place a few month ago. I'm thankful for #NEISvoid and #MECFS twitter (and my wonderful neurologist) for helping me understand what I needed.
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Since so many people asked for details about treatment in my last #LongCovid thread, I thought I'd do a detailed thread on it. I'll start by saying that this was with guidance from my doctors. I know medical care is inaccessible to many but please be cautious.
Things that have helped me the most:
- d-ribose was the first thing that allowed me to get out of bed for more than a few minutes. I credit this with turning the corner from bed bound to "just" home bound.
- CoQ10 gave me some more energy and clarity.
- NADH is the third supplement that has made a real difference in my energy levels.
- B1 and B12 plus a multivitamin
- DHA
- D+K vitamins
- Floradix for anemia
On my 2 year Covid anniversary, a thread about my experience with #LongCovid and what I've learned about post-viral illnesses like #MECFS. This is me just before I caught Covid 3/20. I'd just hiked 10 miles and was having a blast. I was celebrating publishing my 3rd book. 1/
At the time I was in great shape, hiking and running regularly, working on my next book, being a very active mom, contemplating going back to do some university teaching. About a month after that photos was taken, I thought I had allergies. I felt a little tired. 2/
I knew Covid was coming but, as far as I knew, it wasn't really in the states yet. But then, a week later, I had trouble breathing and my doctor confirmed that I had Covid. I was one of the very first cases in the US. Yay me! 3/