Long COVID

[fiery creations]

Please follow the rules. This is not a political post and shouldn't turn into one.

I was reading through old post and saw a poor guy on here that died of ALS but had an MD on the site reach out to him, so you never know. I'm not expecting medical advice but hoping for anecdotal evidence or similar experiences.

TLDR; I'm in my early 30's, was fairly athletic and healthy, and my life feels destroyed since COVID. After many tests and frustration long COVID seems to be the only explanation. Do you or anyone you know have a similar experience? How long did it last, and what helped?

Full version. About a year and a half ago I got floored by COVID. I slept for something like 20+ hours a day for nearly a week and barely ate. I " recovered" but had a wild random assortment of symptoms that were first diagnosed as a hepatic portal vein thrombosis, possible narcolepsy, sleep apnea, and then concerns about ALS and MS.

For reference, at the time I was into bodybuilding with a personal trainer, did BJJ, boxing, and Muay Thai. I was in school. I was pretty damn healthy and athletic.

It started with random strange fatigue where I suddenly couldn't bench 135. Then I got winded walking up a flight or two of stairs. Doctors said I was out of shape...despite the fact in the last month or two I just ran a 20k. They did an ultrasound and said I had a hepatic portal vein clot. It took nearly two months for a CT, by which time they didn't find anything.

The strangest part is how random it is. Some days I can go run several miles up the mountains like a champ. Other days, within 60 seconds I know it's over. My body feels like it's filled with concrete. I can't breathe. My legs feel like they are deteriorating and it's hard to even walk. I feel like I've had a stroke and can't even form a sentence. Near the beginning I ended up in the ED screaming with pain in my legs they said was rhabdo, but likely wasn't (CPK around 1000 for med folks).

After that, I started having narcolepsy like symptoms. Regardless of sleep I was passing out 5-10 times a day into a deep COVID like coma. I was stumbling in lab and breaking glassware. Obvious safety hazard. I was also falling asleep at stoplights. Waking up on my office floor. Not wanting to cause a serious accident or lose my license, I withdrew in my last semester before taking the MCAT and applying to med school. I did an overnight sleep study where they misdiagnosed me with sleep apnea. To make it worse, I didn't even get restful sleep. I was having hypersomnia combiner with insomnia. For months I tracked my sleep and it didn't matter if I got a week of good sleep. I passed out randomly. Also could not sleep for 2-3 days despite being so tired I was hallucinating.

Following this I was camping with my girlfriend when I got intense electric burning pain in my foot. Every 5-10 minutes after that for several days my foot would randomly kick out like my nerves were firing. The pain is so bad I once again I struggled to sleep intermittently for months including up until now. She had to sleep in another bed because even when I did sleep I'd randomly kick her as my foot jumped. Having a grandfather that died of ALS, I was concerned. I also had trouble with balance and had a couple of falls that made her (an ER nurse) think I may has MS.

Neurologist did some tests. CT showed only a couple lesions below the MS threshold. Nerve conduction test was pretty normal. The only thing left is a biopsy of my foot. I tried to get a referral to the long covid clinic but the VA shut it down, along with all future tests and treatment. Unless the biopsy shows something crazy.... I'm screwed. It's coming up on two years. I feel absolutely hopeless and don't know what to do. Most days I am in the house staring at my home gym wishing I didn't feel like I was on my deathbed and could just lift some weights.

The only way I can describe the day to day is that I feel like I have the worst hangover of my life. Like I've been drinking and doing drugs for days on end with no sleep. So bad that I quit drinking for the last month the make sure that had nothing to do with it. I quit all nicotine and eliminated almost all caffeine. I even deleted all social media to make sure it wasn't some type of dopamine thing. Absolutely no change...

My renter was an elderly man that I unfortunately passed my COVID to before a two week vacation. When I got back I took him to the ER for stroke like symptoms. He was randomly walking around the house naked and could not form a coherent thought. After a week in the ICU he was released and I had his family come take him home. He still has not recovered. I still talked to him and he can't even hold a conversation. This is a PhD guy with several published books that I had many in depth intelligent conversations with, even up to right before I left. I can't imagine dementia progressing that fast and they ruled out a stroke. It's like the COVID I gave him fried his brain. I feel terrible for him but I am also scared for myself because I feel like it had similar effects to me an destroyed my body and mind.

Has anyone had any experience with long COVID like this or know anyone that has? How long did it last and did anything improve it? Any advice at all? I feel like a prisoner in my own house... and I have the personality that constantly needs to move and accomplish things. Many days its hard to even read. So if some of you wonder why I'm doing "so much" it's because I'm losing my ****ing mind.

[Bushman]

I had long covid 2 years ago but didn’t experience near as much as you have. I will be 75 in September and still at times experience shortness of breath if I start out two fast doing something. Most of my other symptom were gone in about 6 to 8 months.

[Salt Must Flow]

fiery creations, have you had bloodwork done recently or within the past 2 years? If not, you probably should. I found I was super super LOW on vitamin D and that solved most all of the issues I was having. I couldn't exert any meaningful energy or I'd feel like I was out of breath and going to pass out. I had what you could call sleep apnea too. I'd wake up feeling like I was suffocating or some kind of anxiety attack. Vitamin D fixed me right up the very first day I took it!

I too considered it was alcohol, caffeine or something like that so I quit for a while. I just couldn't believe that lack of a simple vitamin was the actual cause.

[Oystercracker123]

If you haven’t had pulmonary function testing, that may help. Along with a pulmonary specialist with experience. The only reason I suggest it is my dad is looking at a lung transplant after having undiagnosed interstitial lung disease/pulmonary fibrosis for 30 plus years. By most accounts he should have been dead a while ago. If you really want to go down a rabbit hole, try googling the second ingredient of yellow label (rhyzopus oryzae) and “mucormycosis”.

[fiery creations]

fiery creations, have you had bloodwork done recently or within the past 2 years? If not, you probably should. I found I was super super LOW on vitamin D and that solved most all of the issues I was having. I couldn't exert any meaningful energy or I'd feel like I was out of breath and going to pass out. I had what you could call sleep apnea too. I'd wake up feeling like I was suffocating or some kind of anxiety attack. Vitamin D fixed me right up the very first day I took it!

I too considered it was alcohol, caffeine or something like that so I quit for a while. I just couldn't believe that lack of a simple vitamin was the actual cause.

I've had a lot of bloodwork done, but after going back through the last years worth of labs I don't see any vitamin tests. I doubt it's vitamin D since I take a multivitamin and eat lots of foods that contain it. But it's worth checking that and the other essential vitamins that apparently weren't checked. Thanks.

If you haven’t had pulmonary function testing, that may help. Along with a pulmonary specialist with experience. The only reason I suggest it is my dad is looking at a lung transplant after having undiagnosed interstitial lung disease/pulmonary fibrosis for 30 plus years. By most accounts he should have been dead a while ago. If you really want to go down a rabbit hole, try googling the second ingredient of yellow label (rhyzopus oryzae) and “mucormycosis”.

I actually have done one of those, although never while experiencing the crippling fatigue and shortness of breath. It's so random and appointments are so far out it's been hard to catch some things while they are happening.

Sorry about your dad.

[Oystercracker123]

No worries. He made it this far and hasn’t given up.

Throughout my own experiences and seeing some others go through some shit, what I’ve taken away is that there are a number of tests that CAN be done, but aren’t unless there is a problem or they’re specifically requested. Various genetic screening comes to mind. You mentioned fast onset dementia earlier, we had a family friend that found out he had Huntington’s. It can be fast, but isn’t always. He made it like 2-3 times longer than anticipated.

Where I’m going is unless a Dr. comes up with a diagnosis on their own or has a hunch, many times some tests may get overlooked (at least in my experience). Had a friend who had a stroke who found out afterwards they had a clotting disorder. That’s a hell of a way to learn news like that.

You can either “encourage” the dr to order the tests, specifically request them, or order genetic screening through various online vendors. I would caution that depending on the vendor, there can be serious privacy concerns.

Hopefully like salt mentioned it’s something as simple as supplementing vitamin d. Good luck.

[fiery creations]

No worries. He made it this far and hasn’t given up.

Throughout my own experiences and seeing some others go through some shit, what I’ve taken away is that there are a number of tests that CAN be done, but aren’t unless there is a problem or they’re specifically requested. Various genetic screening comes to mind. You mentioned fast onset dementia earlier, we had a family friend that found out he had Huntington’s. It can be fast, but isn’t always. He made it like 2-3 times longer than anticipated.

Where I’m going is unless a Dr. comes up with a diagnosis on their own or has a hunch, many times some tests may get overlooked (at least in my experience). Had a friend who had a stroke who found out afterwards they had a clotting disorder. That’s a hell of a way to learn news like that.

You can either “encourage” the dr to order the tests, specifically request them, or order genetic screening through various online vendors. I would caution that depending on the vendor, there can be serious privacy concerns.

Hopefully like salt mentioned it’s something as simple as supplementing vitamin d. Good luck.

I don’t even want to get started on the VA, but trust me I know what you’re talking about. Nearly all of the tests I’ve actually went through, I had to bring up and beg for.


At this point I’ve had two separate residents express concern and bring up genetic testing and some other stuff. As soon as they ran it by their attending physician they were shut down. It certainly feels like something that SHOULD be done, but they don’t want to pay for or something.


Do you happen to know of any specific genetic testing through the online vendors you mentioned that arent a scam? Not worried about privacy. The govt already has my dna and much more.

[Oystercracker123]

No, I can’t recommend any. I haven’t looked at them recently, I’ve had a dr that has been a little easier to work with than the system it seems like you’re in.

[NZChris]

In NZ, some tests, like Vitamin D, can be done without going to a Dr., but you have to pay for them yourself. The Vit D test is not expensive, I've just had one done.

[robotfunk]

My girlfriend has long Covid and could only work one hour a day. A few months ago she got all kinds of training and consults for it, and one of the things she started to do is take 2 or 3 20 minute naps per day, just closing the eyes, not actually falling asleep.

Another, experimental, treatment is the use of SSRI's, which are normally used as antidepressant. More and more research indicates it can help the disturbed bodily balance caused by long Covid. Our GP said sure, let's try it, and gave her an depression diagnosis to avoid any admin hassle. She improved (slowly) almost immediately and is now back to 2.5 hours of work per day. Google it.

[The Booze Pipe]

I read this and been thinking about it for a few days. It occurred to me that we have a friend with a similar story. She was a very active runner, RN, and all the things.
She now can hardly get out the front door most days. They did tests similar, that have been mentioned above. She was diagnosed with Pots disease! I cant tell you much more about it. But might be something to really look into.

[fiery creations]

Appreciate the replies and private messages sharing. Got a few more things to at least bring up and pester with them. (Not) surprisingly going back over labs I don’t see any tests for vitamins.

Given the crazy all over the map symptoms I don’t think it’s something like pots or a vitamin deficiency. But you never know. I just wish I could figure out literally anything that improved it. No correlation to any food, exercise, alcohol, etc.

[shadylane]

Long covid and other medical problems beat my ass over the last couple years.
Best advice I can give is to just keep on fighting, because getting old and/or sick isn't for sissies.
Maybe check with your Dr and see if it might be Lyme disease.

[fiery creations]

Well after two long years of doctors telling me I was fine, I switched to an internal medicine doctor who figured it out in one visit and diagnosed me with ME/CFS.

I have the worst personality for this, having always had the need to constantly move and do physical things. Apparently now lifting weights or doing anything strenuous could destroy me. From what I've read 25% of people end up bedbound or in a wheelchair at some point.

To make it worse, I developed a severe intolerance to alcohol, with just a few drinks making me violently ill. It really takes the fun out of making anything when you can't even try it.

Never just listen to doctors telling you that you're fine if you know something is terribly wrong. Apparently I could have been really messing myself up by trying to fight through it to lift weights and do hard physical labor. The post exertional fatigue or "crashing" can last days or weeks, so I was probably continually making it far worse.


Hindsight is 20/20, but now after reading a ton about it I cannot believe this was not considered sooner.

[Bushman]

Had to google it FC sorry about your condition. Looks like there is no cure.

[The Booze Pipe]

Well shit that's a major bummer! I looked it up to see what it is. No cure but there are many ways to manage it. So keep it up, try different doctors and healthcare professionals. You'll find your way!

There are lots of options like acupuncture, cold plunge tubs, saunas and hot tubs (I highly recommend a hot spring if at all accessible over the hot tub) that all have very good benefits!

[fiery creations]

Thanks. I normally don't bother with anything out of mainstream medicine, but given the impact it's had on my life and no apparent cure, I will be trying whatever I can. An acquaintance that I didn't know had it reached out and said 10-10 years later he felt about 90% better, so at least there's hope of improvement.

Gonna have quite the supply of aged stuff if and when I can drink again without puking my guts out.

[kiwi Bruce]

Had to google it FC sorry about your condition. Looks like there is no cure.

Particularly if booze can't help...what a total bummer!

[NZChris]

Get yourself checked for B1 level on the off-chance that you are one of the rare people that can't absorb it properly.