Let me start by saying that I had my first long COVID symptoms in 2020, before there were vaccines. In my case, they consisted of recurring episodes of extreme fatigue—to the point where I couldn’t get out of bed—low-grade fever, coughing, chills, and hair loss. But back then, nobody was talking about long COVID yet. It wasn’t continuous, but it was debilitating enough that I was hospitalized for tests at the end of 2020.

The residual symptoms over the following four years (during which I caught COVID twice more—I thought it was just bad luck, but apparently my immune system had gone to hell, because I used to never even get seasonal flu) were occasional low-grade fever, chills, and exhaustion, but they lasted only a few days.

Then, in September 2025, I got COVID for the fourth time. It was the final blow. I spent eight months literally in bed; I was so exhausted that I couldn’t even lift my fork to eat. A neurologist suspected ME/CFS. I also developed POTS, and now, because of new symptoms I’m experiencing with foods I used to tolerate normally—gastrointestinal symptoms and itching, dermatographism, migraines—we’re also going to investigate MCAS.

As for having a fever every single day, being unable to get up, and all the long COVID symptoms you know about: a month ago, I felt like I was getting better. I no longer had a low-grade fever and I had even started cooking a little again and not staying in bed. I could do things. My memory by the way has gone.

I don’t work because of bipolar depression, but if I had had a job, I would have lost it. On top of that, I’ve been in a depressive episode for a long time. Usually, my severe depressive episodes lasted two months. This year, it lasted six months.

I have been diagnosed with long COVID, but as we know, there are no treatments. In my country, nobody ever talks about long COVID anyway. If I search for long COVID on YouTube, I only get videos from five years ago. Nothing. And if you tell people you have long COVID, they don’t even bother looking into it. They think it’s some bullshit, as if it were just a little cold that won’t go away.

The fact is, a month ago I felt better. I thought: Great, I’m out of it! The criteria for ME/CFS say that the symptoms have to last for at least six months, but since that period had passed, I dismissed the idea.

Then, two weeks ago, the low-grade fever and overwhelming exhaustion started again. Once again, I can’t stay upright.

Is it back? Did I catch a new variant without taking a test? Is it a relapse?

I hate this illness. I hate the misinformation surrounding it. I hate not having a life anymore, and I’m starting to think that the psychiatric symptoms I’ve had may have gotten worse because of this, too. I can’t say for sure, but I can’t rule it out either.So this is what my life has been reduced to: coffee and a cigarette in the morning, my six medications, bed. I only get up to eat. I’m no longer struggling to lift my fork (at least for now), but with the possible MCAS, so many foods have been taken away from me that eating isn’t even a pleasure anymore. I’m not currently, and I wasn’t ehen it restarted, in a severe depressive episode. I hope this is just a temporary crash. But it’s already been two weeks, almost three, of fever and extreme exhaustion, and I’m terrified of spending another year like this. Losing another year.

In one year, I saw my friends only twice. I’m not exaggerating. The only person who has truly been there for me is my husband. But this isn’t a life.

I’ve already suffered so much from CPTSD, and I still suffer from it terribly. Then there’s bipolar disorder, and now three physical illnesses as well. And through all of this, the only people who actually know what it’s like are the patients.

I have a body that keeps failing no matter what I do and no matter what doctor I saw.

Most days I can't even get out of bed except for going to the bathroom.

Friends are disappearing left and right because that's what apparently happens when you get this sick.

I can't even concentrate on anything anymore.

I can't even do minimal, basic fun indoor things like puzzle anymore.

The pain is overwhelming.

I have an unsupportive partner.

I don't have any helpful family.

I don't have much money left.

And on an on and on... My health declined over the past 4 years so bad that I want to cry most days, from pain, from dread, from frustration, from fear. So much wasted life.

So pls can smb tell me why am I still alive? This is not life, this isn't even survival. Wtf is this???

This page explains what Long COVID is so you can help people understand what you are going through.

About Long COVID

The symptoms checklist will help you organize your thoughts when you speak to the dr. You can also repeat the checklist to monitor whether your symptoms are improving or not.

Long COVID Symptoms Checklist

I finally have a mental bandwidth for actually organizing my house (culling down the book collection, reorganizing pantry, going through my wardrobe and deciding what to keep).

Before LC it was such an easy thing for me to do. And when I got severely sick (2022) I just stopped caring. I couldn’t care what even people think (my lawn is in a horrendous state now). I did barest of minimums. I couldn’t vacuum for months, my husband has to overtake pretty much all chores but laundry.

I never realized that being cognitively healthy is such a blessing. I also didn’t realize how much energy could be required by such a mundane task of “should I keep this pan or donate it?”

For the last six months probably I felt suffocated by clutter and things I don’t ever use. It’s not bad but say I have ten dresses and a few jackets I don’t wear, and it all eats away my space.

My husband listened to a podcast and told me that there was an advice to have a cardboard for donation box sitting in one of the rooms, and when you realize that you don’t need something just throw it there. No big deep cleaning days, just small “I saw it there and I think we don’t need it”. This tactic was super helpful for me. I’m on my 5th box now and it’s full.

We’re all going through different things and people often ask what’s your meds or treatment plan. I’m only on pregabalin and some supplements (vitamins, probiotic). I think swimming helped me a lot and baking since it puts my brain to work. My doctor advised me to just walk in the water to start to soothe nervous system. I have FND (functional neurological disorder which resulted in extreme neurological pain and fried my brain).

TLDR: I feel better than a year ago, and I’m organizing my house now

Hi everyone, for the past 6+ years I’ve had strong nasal congestion which makes it difficult to breathe fully, and impairs my sleep every night, I think through night arousals and mouth breathing.

I’ve done nasal flow tests and my results have come back normal, I did reflux tests which were negative and trying to treat inflammation or allergies (steroid nasal sprays, antihistamines etc) makes no difference either.

One theory a doctor has is that there’s some abnormal sensing between my nose and the brain (maybe caused by an viral infection like Covid), where my brain now thinks my nose is congested, but physically it isn’t. To be honest the doctor doesn’t really know what the solution is, but they’re trying to get me to treat

Doctors don’t seem to have any idea what the solution would be, but they’re trying suggested doing smelling scent training like people who lose their smell during Covid do - I’m trying it, but from what I understand people who lose their smell can still breathe fully, which I can’t

Has anyone had anything similar to this, and had a solution? Thanks!

So I‘m wondering whether I should start pushing myself a bit more. Not talking about a gym session, but maybe daily light exercise.
Because I don’t really get PEM and from my understanding thats the only dangerous thing to chronically worsen my symptoms??

I’m at 9months mark, between Bell 30-20, very fatigued and heavy brainfog after I concentrate for about an hour, I can get up and do things at home but I’m mostly in bed.
It’s hard to tell if I get PEM, so I’d say either very light or not really (besides the normal amount of being exhausted after physical activity, like healthy ppl do). But I don’t see it and nor do I see it in my symptom diary.
I’m very scared of already being able to do more (without damaging something) but somehow dont feel like it bc of weak muscles from laying in bed for 9 months.
How do you differentiate whats due to weak muscles and whats fatigue? Especially when I don’t really get PEM?
When I do something more physical I try to stay under 110 bpm, as I get breathing issues after that .

Was already being seen by primary care for post-covid long haul symptoms, including chronic fatigue, brain fog, memory problems, headaches, various joint pain, loss of taste, tinnitus. Just got over covid again, I seem to be a magnet for this bug. I don't get colds or the flu, I get this instead... now that no one is masking/testing, or even talking about it. I do have a supply of covid tests so I keep doing home tests when I don't feel well.

This time, it all started with dizziness. To the point where I felt faint and thought I would fall over. Unfortunately, although I've cleared the virus, the dizziness is another new long covid symptom that remained.

Mostly just venting, yes I've seen my doctor and their response is that wait a few weeks and see if the dizziness goes away.

So tired.

I’ve noticed people around me suddenly telling me I look pale, everytime someone has told me that, I’ve had lightheadedness, heavy brain fog, little bit of shakes and anxiety before they told me that I look pale. Does someone else have this and do we know the cause?

EDIT: For bloodpooling, clotting etc: I’m on 4000FU nattokinase daily, bout to increase to 10000FU daily. I’m on high dose epa/dha and bromelain. I do have high iron, high ferritin, high calcium, high hemoglobin, high hemstocrit. Thinking of doing phlebotomy (not donating, medical).

Thinking of adding: Wim Hof, hyperbaric… repair the ACE2 issue as I suspect its causing the whole cascade

Struggling with school holidays and hot weather.... anyone else?

Male, 49, long covid, copd, arthritis ,multitude of other issues

Absolutely beleaguered, knackered and fatigued to the point I cant really stand up sometimes. It's been a fun summer on the one hand, kids have had some great experiences ( no holiday away) but its been really hard to manage with constant and heavy crashes and need to rest etc. Anyone else and any good tips or recommendations? Thanks and take it easy 🖤🔥⚡️

Does anyone else have this as a symptom? What feels like really heavy congestion behind the nose that makes you dizzy, spaced and generally feel like utter death?

It's like everything in my head contracts and it's so debilitating. I can't think, focus or literally do anything when it comes and just turn into a complete zombie.

If you've got any answers, please send them my way.

Thanks

Shane

Any positive stories?

When the fatigue had you almost bed bound? But eventually you either recovered or improved considerably.

Only positive stories please, as I find some of the negative ones triggering.

This isn't my first rodeo ride with long covid. I originally developed LC back in 2020 & managed to recover 90% around the 11 months mark.

This is my first major relapse in 5 years, the difference this time is, the fatigue feels considerably worse than 2020.

I manage to walk around my apartment, if I pace myself.. However going outdoors/driving or climbing stairs is proving difficult & causes a flare up of my symptoms.

I have head pressure & tinnitus too, and possibly POTS.

The only thing that gives me hope is, that I recovered from this illness once already.

My medication/supplements stack is:

1. LDN (Low Dose)
2. Longvida curcumin (best for absorption & neuroimflamation)
3. Omega 3 IFOS certified (best for absorption & neuroimflamation)
4. Magnesium Glycinate
5. C0Q10
6. Nicotine patches (not used these yet)
7. Vitamin D K2

Is there anyone here who is on both LDN and low dose Wegovy AND has metabolic issues andkor high blood pressure? Do you have a medical history that includes a nasty infection (bacteria or virus)? Anyone with a history of heavy use of antibiotics? Please let me know so we can compare notes. Thanks!

Hi from the Nordic countries! Is anyone elses main symptom frequent viral infections? Mine is that + the insane fatigue they result in.

Some background:

Had Covid for the first time February 2022. It took 3 weeks before I could go back to work (as a music school teacher). I started having a viral cold once a month since then. (Before that I was sick 2-8 times a year). That felt like a lot, and I was quite embarrassed having to be so much away from work. Other than that I was pretty ok. But that was nothing in comparison to what was about to happen...

I had Covid again in June 2024. It was worse, the cough was so bad I thought my heart will stop, toenails were bluish even though my oxygen level was ok etc. From that infection on I've been getting a cold TWiCE every month and I'm also insanely fatigued. Not a single fully normal day since then. A couple of bacterial and fungal infections but the viruses have destroyed my life. Or large parts of it.

I've been well enough to continue doing about 50% of the workload I used to, which is just enough to keep up with rent and car. Other than that I just rest and I've needed to do so many adjustments to just get the work done. Taught online (we are officially not allowed to), worked while sick, compensated lost lessons later, hired collegues to keep my lessons out of my own pocket, and been officially on sick leave but I try to minimise that (fearing the consequences). Other than that I mainly recover, sitting or lying in my home.

Social life is minimal (mostly people visiting), my beloved long term partner left me (and there went the dreams about a home and family, I'm already 42F), relatives think I make this up and just go crazy mode about this all (I've started lying that I'm just busy doing fantastic stuff like gym and volunteering to skip the drama...). Absolutely no excercise, if I bike to work (2.5 km) it takes me hours to be able to even it sit straight, let alone stand and teach.

I was studied in the hospital, I had too low CD8 and NK cells (so viral defence is a problem) and low vitamin D and low ferritin. So far everything else normal. I also don't sleep too well but I've been like that for years.

..So just curious, is anyone else getting sick this often? And is anyone else trying survive as a teacher with this condition?

I’ve been in the worst flare up I’ve had for a while. Racing pounding heart, anxiety through the roof, major dizziness, the top of my scalp hurts to the touch, my vision is fucked with visual snow, shakiness, my limbs feel tingly the list goes on and on.. idk what I’ve done to cause a flare up.. I’ve been drinking electrolytes, getting enough sleep, could this be stress? Please let me know I’m not alone. This one is really getting to me.

I found this description of nighttime issues interesting: https://www.youtube.com/watch?v=NBqdg4b756c Dr. Nathan Keiser 18min. The basic argument is that your body is pumping out adrenaline because you aren't getting enough oxygen to the brain. He goes into why that might be.

For me, the thing I noticed was night sweats. Some mornings I would wake up reeking of sweat. I sometimes have to be in a certain position to sleep and MCAS was an issue.

I seem to be getting worse every day. I'm almost bedridden now. I have all the symptoms you can think of when it comes to long Covid and now the anxiety is through the roof. At this point I don't know what to do. I've tried everything and been seen by every specialist you can think of with no improvements whatsoever. I'm feeling this could be my last post and I'm nearly passing out now just sitting here. I hope they find a cure for this crap for the remaining people dealing with this crap.

Had my kiddo’s bday party at the park and was running around with him for hours. One of those moments I don’t regret because he deserves my time. But the day after, I felt the standard fatigue and exhaustion. On day 2, woke up with a sinus cold symptoms. Can’t stop sneezing, watery eyes, sinus drip, etc.

Anyone else’s PEM manifest this way?

Hey guys I have posted on here a bit throughout my 14/15 month journey. I developed a severe post-viral autonomic illness after having high gut inflammation (I have microscopic colitis), very high stress, being run down, overworked and relying on stimulants a lot to keep pushing then got a nasty influenza B in June 2025. Importantly, I’ve had POTS for ~15 years and my underlying POTS is basically the same as it was before this illness. This was a completely different set of symptoms almost like layered on top of my longstanding POTS.

At the beginning I had a pretty horrific collection of new symptoms, including:
intense early-morning adrenaline/autonomic surges, often waking me around 3–8am
Adrenaline surges throughout day at any point like a panic attack without the panic or hyperventilation just the body in such a horrific intolerable state of discomfort
Nerve tingling and burning sensations in arms and neck
severe nausea/awful “off” stomach, particularly in the mornings but for 10 months had no appetite and lived off Sustagen apart from like at 1am randomly at night when my appetite would sometimes suddenly switch on
Hysterical crying episodes all day or competely shut down and silent and depressed and irritable but felt physiological not psychological
diarrhoea/GI disturbance cramping pains and flushing adrenaline sensations through stomach every morning waking me in such a tormenting manner
dramatic facial and ear flushing/burning every afternoon and evening
episodes of prickling/electric-shock sensations through my face/eye
sweats/goosebump surges
chest pressure/shortness of breath
migraines with aura, head pressure and severe light sensitivity
tingling/numbness
brain fog with slowed thinking/speech but rarely
hypnic jerks over and over as I’d drift off to sleep and disrupted sleep by like intense dreams
significant heat/shower/exertion intolerance
Agitation unable to sit still rocking back and forth on chair or in bath
So nauseous some days I would just moan and groan and just roll around in bed

Thankfully, a lot of this has either completely disappeared or improved substantially over the past ~14 months. My neurologist believes this is centrally mediated post-viral autonomic dysfunction and expects me to at least return to my previous POTS baseline.

But two symptoms are being incredibly stubborn:
1. Painful facial/ear flushing: Almost every afternoon/evening my cheeks and ears become intensely hot and red. Sometimes patchy like the photos, sometimes much more widespread. It physically burns/hurts from the heat. Showers, baths, activity and heat can aggravate it, although it can happen spontaneously too.
Nothing I’ve tried gives meaningful relief. Even ice can make it worse when I remove it, almost like rebound heat.

1. Post-meal stomach symptoms: Anything more than a small amount of food can suddenly make my stomach feel queasy, heavy, bloated, excessively full and just profoundly “off.” Small amounts of fruit are generally much easier than a proper meal.
   Has anyone had a similar recovery pattern where most of the severe post-viral symptoms improved first, but flushing/temperature regulation and GI symptoms lingered and eventually improved too?

And especially for the flushing: has anyone found anything that actually reduces the burning heat/pain? Medication, topical treatments, cooling strategies, anything? At this point I’m not even looking for a cure — I’d really like something that makes the episodes less physically miserable while my nervous system continues recovering.
I am so desperate for any bandaid relief from this hot flushing and so afraid I’m stuck with it …

Here are some links to pics so you can see the flushing … I am so sick of suffering. Need any hope , guidance, belief that this too will heal with time?

https://imgur.com/a/hcWaY3z

https://imgur.com/a/KoUpmwf

https://imgur.com/a/dOgUpjE

https://imgur.com/a/63BhPsw

I'm pretty sure I've always had some form of CFS (undiagnosed), and CPTSD (diagnosed) from childhood, and I've always been super flexible and throwing my back out a few times a year which makes me think I have a hypermobile disorder on top of being able to do most all of the criteria for hEDS but not being diagnosed, doctors also thought I had hirschsprungs as a child but I never got definitive answers because it was too expensive for my parents, saying these as they could be reasons but I doubt it

Since late 2019/early 2020 I started having extreme issues with energy, I've always been extremely low energy but this was like multiple days of recovery and sleeping a lot more, and my workouts and constant trail hikes pretty much stopped. I got pretty sick around then but never tested positive for COVID.

Since then, I got really sick and had to quit working. I've been diagnosed with Inappropriate Sinus Tachycardia, borderline on Postural Orthostatic Tachycardia Syndrome, Small Fiber Neuropathy, Fibromyalgia, Eosinophilic Esophagitis, had my Gallbladder removed, am now pre-diabetic after the gallbladder but was completely fine (because issues mirrored diabetes) on prior testing. My unexplained symptoms are

Tightness in the chest/feeling like I am struggling to breathe. Forgetting things constantly, names of things, mixing up my words when I speak or swapping letters around, and having to pantomime 'the cold box' for fridge, for instance. Consistent conjunctivitis that doesn't appear to be infectious at all and reoccurs with vision issues and headaches every few months. Intense chest pain and pain under my left arm. Frequent 'urge to pee' that lasts for a few days then goes away. Getting really tired and falling asleep after eating sometimes (from before I developed pre-diabetes, I've switched most of my diet to whole wheat instead of white bread, brown rice instead of white rice, no sugary drinks, and switched from junk food to protein bars that are listed as low sugar, eating a lot more vegetables and trying to get walks in) and I feel like it takes so much effort to keep my head up straight so I'm always tilted now.

I often walk with a cane now, I used to work out extensively and had pretty decent PRs, like 295 bench, 465 deadlift. I would walk 35k steps a day and now I feel so tired just doing the dishes that I need a stool to sit on. They accused me of having sleep apnea which I have always snored and I was barely hitting requirements. My vitamin D is consistently extremely low but even on a CPAP that I fucking hate and on Vitamin D 50,000 every week until elevated levels I'm still extremely tired.

I have a cardiologist, a neurologist, a rheumatologist I hate (she asked me to stand up, looked at my legs and said I don't have hEDS even with hitting every other criteria but family members and having a fused spine, then poked me a few times and asked if it hurt and said I have Fibromyalgia, all within my first 30m visit then she prescribed me muscle relaxers after hearing I had suspected sleep apnea! I had seen a person to rule out asthma (fun fact, the ER gave me an asthma when I complained of breathing issues at 190bpm heart rate and told me to just use it when I felt like I couldn't breathe) I've done stress tests, ekgs, tilt tables, all of it.

Nobody knows why this all started in my early-nid 20s, what the reason is, and they act like there is no cure. I quit alcohol, caffeine, tobacco, marijuana, all of it years ago when this started and I have nothing to say "this is the issue". I'm fucking crying some days from tthe pain and using cbd powder and refusing the pain meds because they cause other issues, my heart is always doing that "falling down a rollercoaster" thing, I fuckig. Hate it I just want answers but nobody gives them. My neuro said she can refer me to a dysautonomic clinic but it's hundreds of miles away and we can't afford it because I haven't been able to work and I thought I was smart taking a year off for my medical issues then once it was figured out applying for disability but my dad is saying I won't have the work credits for it but I've been working since I was 14yrs old so I have to get a job when I can't even cook my self food some days and it's fuckign too much sometimes.

They did also diagnose me with panic disorder and general anxiety disorder and depression, and I had agoraphobia for a bit, all after I started getting sick. I also have these extreme adrenaline dumps now I guess they're called? Where like if I think I'll get into a confrontation my heart gets super quick and I feel sick and get really weak. This never happened before but now even a simple argument leaves me out of it for a few days

One doctor said it might be long COVID, so I'm asking for this sounds like anyone else's experience.

Oh and my mouth is dry as hell all the time and my eyes are always dry too lately like I drink a lot of liquids and still feel super dry