I continue to remain 90-95% recovered from my Long COVID. But what did I recover from? I went back through my symptom journals, and here's a list of all the Long COVID symptoms I had at one point then recovered from:
Heart palpitations. Sometimes they would last literally all day, like 16 hours. And occur in different parts of my body (legs, neck). It really used to freak me out, to the point where I wouldn't even tell my doctors how bad it was.
Numbness, tinging and odd sensations in my hands and feet. Sometimes specific fingers would go numb for hours. With my feet, I'd feel like someone was touching them with their fingers, or if I had stepped on a bug.
Tendonitis in my right elbow and right hand. I've had tendonitis issues from weightlifting in the past, but typically, it would gradually resolve over time. But not Long COVID tendonitis - it would come and go. One day would be bad, the next fine, and the day after bad again
General dizziness and feeling lightheaded for hours. Not like POTS dizziness that gets triggered on standing. Just a general dizziness that might last the better part of a day
PEM-like energy crashes. All of a sudden I would feel like I'd been hit by bus and would need to lay down for several hours and try not to die.
Blurry vision. Things would look sort of color-shifted. Often occurred following exertion.
Weird TMJ pain and odd sensations in my jaw muscles. I've had TMJ issues since I was a teenager, but this was different.
Caffeine intolerance. Drinking more than half a cup of coffee would give me horrible chest pain, almost like an allergic reaction.
Feeling like my back had "blown out" and not being able to walk comfortably for several days every month because of terrible lower back pain. I think triggered by a muscle spasm. Had to spend a few months sitting with a heating bad most days.
One time I had a panic attack.
Pain in various parts of my body. Honestly, this was probably the worst of all my symptoms. Pain in my neck. Excruciating chest pain. Pain in my sides. Occasionally, I felt like my entire body was in pain, as if I had been struck by lightning. Would last hours
Muscle twitching and tics throughout my body. Almost every day a different muscle would twitch off and on for the entire day. Lasted several months.
If you lift weights, there's this thing called delayed-onset muscle soreness (DOMS) which is when your muscles ache bad a day or two after lifting weights. I would get that feeling occasionally in random muscles for no reason
I'd feel like I was going downhill on a rollercoaster (like where your stomach drops in your chest) sometimes just walking around my house
Bouts of nausea that didn't last too long, but would hit me for about an hour almost every day
One time the left side of my face went numb for several hours. Had to go to the ER for that. Think it was caused by a Pfizer COVID shot as it occurred a couple days after
Other pain symptoms I forgot: feeling like an elephant was sitting on my chest for hours. Stabbing pain in my upper back. Pain in my right shoulder that turned out to be a torn labrum. Burning pain in my toes. Burning pain I my abdomen.
Hearing in the left ear would frequently go out. Still sometimes occurs, and I think it did even before I ever got COVID, but there was a period where it was occurring every single day for minutes at a time
Episodes of air hunger. Would just be sitting at my desk and all of a sudden I would feel like I couldn't breath for 10 or 15 minutes. No matter how times it happened, I would always panic a bit when it did, which probably made it worse
I felt like someone was choking me or trying to strangle me. Probably inflammation in my neck
General feeling of fatigue in the background every day, all day. Like my battery was drained.
I was still able to exercise through most it, but I couldn't do as much exercise as before. I would always get oddly exhausted before the end of a workout I used to be able to handle without issue.
Think that's everything, but I may be missing things. Looking back, I think I've blocked out most of this from my memory. I only found it digging through old symptom journals.
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I went to the Stanford Chronic Fatigue Syndrome Clinic today. If you're in California, and you have Long COVID, and you're unable or unwilling to pay for a private doctor, it's probably your best option for finding treatment:
My expectations going in were low based on some of the reviews people left on the helpforlongcovid website, but I was pleasantly surprised. They prescribe several treatments, order blood work, and were willing to work with me to try to get other treatments I'm curious about
I would contrast this with Long COVID clinics I've been to, including Stanford, which only offers a couple treatments, doesn't really care about blood work, and the appointments basically consist of a long interview with not much offered, as if they are just collecting data
I don't have much sympathy for people who complain about the COVID lockdowns because my lockdown experience was worse than 90% of the people in this country. And yet, I would gladly relive the COVID lockdowns 10 times before I would live one year of being sick with Long COVID:
At the time, I lived in Seattle, which was one of the most locked-down and later lawless cities in the country. It's interesting to me that so many people don't remember this, but there was this thing called the CHAZ where protestors basically took over a few blocks of the city
My apartment was nearby, and so I was surrounded by constant civil unrest. Throughout the summer, there were roving street protests around my building: Cars were burned in front of my apartment. One time, police shot a canister of tear gas into the lobby
People have called me a conspiracy theorist for this, but I believe that COVID (and maybe even the COVID vaccine) damages the Achilles tendon and increases the odds of suffering an Achilles tendon rupture (ATR). There's no proof, but evidence continues to pile up:
This is fresh in the news since an ATR may have just determined the outcome of the NBA finals. Early in the game, the Pacers' star player Haliburton suffered an ATR. Because of that, he had to leave the game early, and without him his team lost the finals.
But Haliburton's injury wasn't the only ATR in the NBA playoffs this year. Several other players sustained them as well, making it the worst year for ATRs in the NBA's history.
We actually don't know if our civilization can survive infinite COVID reinfections. We're just sort of hoping that's the case and pretending the evidence to the contrary doesn't exist. It makes me wonder what the American Indians thought and said to each other back in the 1500s
I'm not such a doomer that I think anything that catastrophic will actually happen. But it's a novel virus. No one understands what Long COVID even is. The political and leadership class across the world is mostly in outright denial. We just don't know
It's interesting to remember that arguments like this were being made by major figures in China prior to their reopening. Then omicron came along and they sort of...forgot about it. But nothing has fundamentally changed. We don't have any new data to make us more optimistic
I've tried ~50 different interventions for Long COVID, and have talked to hundreds of other patients and read accounts online for years. If you haven't tried much, these are the things I'd look into. I'm going to rank these by the easiest to get up to the most challenging:
Easiest (OTC or supplements): creatine, NAC, glutathione, H1 and H2 blockers, nicotine patches, probiotics, nattokinase, CoQ 10, quercetin
Requires a doctor, but many PCPs will prescribe if you emphasize your specific symptoms and/or give them some case reports and research: SSRIs (yes, long COVID is not psychosomatic, but these do help some people), Ativan, metformin, modafinil, beta blockers
I haven't written about this really, because I didn't want to give the impression in any way that Long COVID is a good thing, but I do think it might have actually "fixed" a different long term health problem I had since I was a kid:
When I was a teenager, I was diagnosed by a neurologist with delayed sleep phase disorder. That basically means I am (or was) an extreme night owl. They told me I might grow out of it, but I never did. So, for most of my life, I found it impossible to go to bed before 1 or 2am
It didn't matter how hard I tried to go to bed early. I tried all the tricks: melatonin, a strict bed time, working out in the morning, restricting caffeine etc. Nothing really worked.