Covid for me too except nervous system flavor so approximately zero doctors had any clue what was going on, or why suddenly speaking/hearing speech made me want to cry, why light and sound (any volume) were extremely painful and overwhelming, and why I *couldnt* sustain sleep for weeks.
It’s truly a monster virus. I’m sorry you had this experience , fellow traveler.
Nurse here: it was a looong while before we found out that COVID is not a lung disease as everyone thought at the beginning, it's vascular so it can attack pretty much ANY part of your body. COVID is, as we say in Brazil, a filha da puta disease. Took so many people. I don't desire on my worst enemy what we went through in the frontline.
I have a friend who used to work in a hospital during covid, but she wasn't medical staff. She said she'd pass through the ICU and listen to the nursing staff complain about having to wear masks while they had formerly fairly healthy people on ventilators. She got vaccinated asap and lost respect for that hospital and most nurses. I don't understand how anyone who spent their time in the trenches would be anti masking or vaccines.
Unfortunately many healthcare professionals are STILL anti mask, as they won't wear a respirator during work to prevent themselves or others from getting sick. It's truly sad
I concur. Last time I had it I was convinced I was having a heart attack. Felt like someone had a ratchet strap around my chest and was pulling it tighter and tighter.
Covid sent my body berserk back in 2022. They couldn’t figure out what was wrong with me. They called it post covid arthritis . Most pain I have ever been in. And mind you I’ve been cut open and had a human pulled out of me and then my tubes tied and stapled back together all in 1 sitting . The pain was worse than that ! But come to find out it was autoimmune flare . Come to find out the arthritis I had as a child that “went away” was actually autoimmune rheumatoid arthritis and mixed connective tissue disease . So I guess I was in remission for almost 40 years and covid bought it back with a vengeance 🤦🏾♀️
Woah, yes! It causes rheumatoid arthritis in my body too! And unfortunately the vaccines trigger it too. I'm super supportive of vaccines, but after spending 36 hours at an unrelenting 8/9 on the pain scale (and I have a high pain tolerance) I'm just way too scared to risk it again.
Covid kicks my ass but signing up for guaranteed pain isn't the way either. It's sad but I've definitely altered my lifestyle to be more of a hermit.
The Covid vaccine didn’t bother me but now that Covid has screened me up I’m scared 😭 I want to go to nursing school and I’m afraid of doing the titer in case I need the live MMR vaccines. My doctor said that I would have to come off of my immuno suppressant four weeks prior to taking the vaccines at four weeks after I would have to stay off so that’s two months. I will probably be incapacitated. I read online that nursing schools may give you an exception, but once you do clinicals, the hospital will not.😭
I had a family member get Covid. They were in there late 70s. After getting Covid, they started hallucinating and becoming angry which I’ve never seen this person angry EVER. They were the happiest person. They thought the nurses were trying to kill them. Come to find out, Covid “activated” their autoimmune disease that never had a symptom of in their life and their immune system thought their brain was an enemy and was destroying it.
Oh my goodness that is crazy wow . I know autoimmune diseases cause us to attack ourselves but I never even thought of the brain . Did they ever bounce back from that ? New fear unlocked 😭
I’m ok but the flares suck. Skin goes crazy , joints go crazy . Never seen anything like it. I’m on immunosuppressants now so for the most part I’m doin pretty good.
I’ve been lucky to be able to rest a LOT in the months since contracting it most recently (7mo ago) but I’m not back to baseline yet. I think it was a gnarly combo platter of dysautonomia/orthostatic intolerance and vestibular / migraine issues. I spent weeks in extreme sensory deprivation and near isolation — truly the most terrifying thing I’ve ever lived through.
I’m not OP but I have all my Covid shots + boosters and I got Covid three times, the second time was the worse and the doctors straight up told me if I wasn’t vaccinated I would’ve 100000% died.
I got the vaccinex2 and got Covid twice as well. The first time little to no symptoms, the second I had Pancreatitis and couple with Covid I was in ICU for 4 days barely able to walk and oxygen level monitors going off, even though I felt okay other than that and the pain from the pancreatitis.
It really was. It was wild to see how different everyone’s symptoms were and I can’t imagine how much more catastrophic it would’ve been if the vaccines were readily available.
I had what I call 'the OG covid'... straight from China. I was sick for a few months. Lost my sense of taste and smell until I think my second vaccine... might've come back shortly after my first but it was absolutely after the vaccine. Was nice for fruit not to taste like rotten metal. I know metal can't really 'rot' but that's the best description of what my favorite fruit dishes tasted like.
Also had the OG Covid. I'm in Washington state, where the first case was reported in the country, but we got sick months before that. It was November of 2019. Went through my town like wildfire. My doc confirmed it later, said they had TONS of atypical pneumonia that wasn't influenza A or B. Anyway, we all had different symptoms- my middle school aged son had stomach issues, I had the wheezing and coughing and my husband was feverish and actually fainted twice. It took a good three months before I could climb a flight of stairs without coughing, and I am really fit. I remember laying in bed one night when it was at it's worst and feeling like I wasn't getting enough oxygen and thinking "This is how people die". None of us ever went in to the clinic, though. Didn't think they'd be able to help since it was viral. I've had it at least three times since then, and I am vaccinated. It was never as bad as that first time.
So, after you got COVID, you got a vaccine and got your sense of smell and taste back??
Which vaccine?s? did you get?
A relative of mine has lost nearly all sense of smell, but I don’t think they’ve gotten any vaccines. They might be inclined to if it might bring the scents back.
Me? Yes I’ve vaccinated and for the most part kept up with boosters. Infections shortly after vaccination were actually worse during infection (higher fever, more exhaustion) but had fewer lingering issues (not zero). Infections further from vaccination were milder but seemed to leave me with more prolonged post acute sequelae.
I think some of it is the strain, some of it is vaccination status, and some of it is just how much you have brewing in the background when it hits you.
It hasn’t changed how I view vaccines in general but it has made me a little afraid of the COVID vaccine. It’s terrifying and traumatic to have a constellation of medical issues that doctors truly do not know how to react to or manage. But I am hopeful that the vaccine will be less terrible than another infection, and I think the newly approved formula is a slightly smaller dose which may help how people tolerate it.
Did you vaccinate, did it change how you view vaccines?
Omg I got this suite of symptoms too (though not nearly so bad as you, I was never hospitalized). I have my fitbit record still from that time - the first week of infection, I managed just four hours of total sleep for the entire week. The next week, I managed 7 for the week.
It wasn't until just last year that I was able to sleep more than 3-4 hours at a stretch. It turned by brain and body to sludge.
I'm glad I ran across your comment, you're the first person I've heard of who's shared the severe insomnia symptom.
My son got post-viral cerebellar ataxia from his 2nd covid infection. It was terrible, he couldn't walk well and had some pretty serious neurological deficits. He had his limbs back under control after 6 months but the nystagmus, fatigue, and cognitive problems persisted for a couple of years.
I'm grateful we all survived (my FIL died of covid) but man we didn't come out the same.
Good god that sounds terrible — four hours in a WEEK?!? There are lots more of us with the insomnia piece — if you ever want to check the long covid subreddits, you’ll find lots of stories of similar. I wasn’t ever admitted to the hospital, just in and out of the ER to be told “everything looks fine” and offered anti-anxiety meds that did not work as intended lol.
I cannot imagine getting only 4hr of sleep all week. When I first got sick I knew it was Covid because of the insomnia — I woke up at 4a and was wide awake. The vaccine has done similar to me. My sleep slowly deteriorated over the weeks that followed, and I was waking up jolting awake with night sweats and heart racing. I was usually able to cobble together 2-4hr per night, though, even at the worst of it though it was heavily disturbed. But for me that lasted several weeks.
I’m 7mo out now and sleep is consolidating better now, but it’s taken a number of avenues to calm my nervous system (daily rest periods, eye masks, a balanced low histamine diet and eating every 4hr while awake, electrolytes and extra water, magnesium, increasing my ferritin levels, and a new glasses prescription oddly enough) to help get me here.
In retrospect I think it was a combination of simmering migraine (likely with a vestibular component) and dysautonomia/orthostatic intolerance for me.
Have you had it again since then? I am very afraid of reinfection after all this. I’m sorry to hear about your son — that had to have been very scary for both of you. Hoping for continued healing for both of you.
It was so weird, I'd never had a respiratory disease that gave me insomnia. I was fully expecting to do what I normally do when sick - be totally exhausted by the smallest effort and sleep most of the day. Instead I was totally exhausted by the smallest effort but entirely unable to sleep. My other major symptom was racing heart rate (up to 160) which continued for several months before fully resolving. I didn't go to the hospital or doctor - one son was at summer camp and the other was slated for an international trip 10 days after my symptoms began. I isolated in the guest room and did not emerge for 10 days. My son had the time of his life living off of door dash and my stash of frozen bagels, gaming to his heart's content, living large. He'd leave offerings of water and food outside the door which I wouldn't open until he was in the other part of the house. It was a strange 10 days.
My son at summer camp came home wirh covid. That case was mild, it was the next that took him out (and yes, so scary, ataxia didn't emerge until 1 month post infection and it had all the hallmarks of a brain tumor. Covid complications were a blessing in comparison).
Strangely, my other son, the jet setting gaming bagel eater, has never contracted covid which he boasts of frequently :)
That was my first infection, summer of 2021. The insomnia persisted until summer 2025 but now I am pretty good - 6-7 solid hours a night.
I know everyone is different but I hope my experience is somewhat reassuring. I have had boosters since with no exacerbation and, more importantly, 2 more covid infections. The first was very minor with mild cold like symptoms, the second was nearly entirely gastrointestinal. It didn't worsen my insomnia and there was no recurrence of tachycardia.
Sounds like you're doing really well for 7 months out and on an upward trajectory! I pray that, should you be reinfected, you have an easy as time as I did. I understand the fear, covid is a bizarre and unpredictable disease.
When i had it, i told my fiance that this thing almost feels like it was made by a scientist to seriously fuck you up, it does all of the worse things so well.
I also developed photophobia as a consequence of covid, but I was lucky it only lasted around 2-3 weeks. it was so demoralizing to hear teachers not believe me that it hurt if I didn't wear sunglasses, a hood over my head and squinted in class! I was even sent to an ophthalmologist who obviously found no physical damage in my eyes. on top of that, I was embarrased by the technicians in the corner who commented on the meds I was taking. I was taking some for my anxiety and ocd, but they can also be used for schizophrenia and that's the part they were awkwardly whispering about💔
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u/PsychologicalFox3357 10h ago
Covid for me too except nervous system flavor so approximately zero doctors had any clue what was going on, or why suddenly speaking/hearing speech made me want to cry, why light and sound (any volume) were extremely painful and overwhelming, and why I *couldnt* sustain sleep for weeks.
It’s truly a monster virus. I’m sorry you had this experience , fellow traveler.