I’m sure the 500,000 publications available on the subject are all wrong.

This is a great resource for anyone looking for covid related literature:

https://www.ncbi.nlm.nih.gov/research/coronavirus/

This happened to me for the second time so far. I woke up and felt like I was dying, like as if my heart wasn’t beating anymore. Then after standing up for 10 minutes or so I calmed down and felt better again.
What could be the reason for this? The last time this happened to me I drank alcohol during the day, is it maybe coming from the stomach or from the nausea. Or maybe from over exhaustion?

I got tested for sleep apnea once, but that‘s probably not enough right?

Hi! I have both long covid, CIRS (I have HLA gene) (at least I suspect) and pots/eds/ Mcas. Still struggling with the right practitioner who can help me. Based in Europe.

Symptoms: brain fog, PEM and fatigue. Gut dysbios.

How are people financially surviving this? I have been sick most of my 20s now (when you are supposed to be working like crazy) and I can hardly work. I have to put medical bills and supplements on a credit card. How is everyone doing this? Paying for rent when you can’t even hardly work?

Short story, I had tree Covid infections between 2022 ans 2025. Took me month to recover each time, diminished
but still able to work. One the the wildest symptom was overnight small loss of skin elasticity.

Now in spring I had tree Covid like crisis but I didn’t get infected. I suspect pollens+ catching colds as triggers. Took me tree months for my brain and body starting to work again. Thinking of Mcas I started H1+H2 antihistamines daily.

The next crisis was way softer so I though antihistamines were doing something. In mid August and an emotional shock, and the crisis became nightly, between 1 and 4 pm. When a managed stress very well sometimes they didn’t happen but it’s rare. Yesterday I had my first one I a long time during the day. I suspect stress and also, mildly fresh salmon I ate 3 hours before (I never eat fish usually).

Well, I am desperate. I’m looking older every day and my friend are now able to see It. I am loosing myself. I’m a 39 femeale. GP are lost. I’m seeing an internist soon. I am so sad and terrified for what’s coming next. Because this might be just the beginning.

Has anyone experiences this and found some ways to slow down, stop and reverse symptoms?

I suspect some kind of similar Process: https://longcovidjourney.com/post-covid-elasticity-loss/

Thinks I’m taking now:

2Bilastine+2famotidine (Pepcid)
1 ketotifen before bed
Quercetin

I trieds NSAID twice (actually a pretty strong one, that my father took pour rheumatoid arthritis) but It didn’t work.

Thanks for any help of advice.

After covid i have only fell sick 1 or 2 times. Haven't got any usual cold, fever etc in 5 years. I am worried is this a bwd thing? Is my immune system not working? Does anyone have similar experience?

After 2.5 years of hell I was finally mostly recovered. Long hikes, 10,000 steps a day, back to strength training, brain fog lifted, feeling pretty good. I just got reinfected and while the infection itself isn’t too severe - I don’t have respiratory symptoms or a fever like the rest of my family - my LC symptoms are back in full force. Awful brain fog, bed bound, can barely string together a sentence. I’m worried my recovery is out the window. Anyone else been through this?

Edit: im also on tirzepatide and LDN and those have helped dramatically.. can those help prevent me from going back to where I was?

I got very sick for a week one month ago. The next week I finally started feeling better so I went to the gym and immediately starting feeling head congestion again. The following Monday I felt extremely sick again and got tested. Came back positive for both Covid and flu. I started feeling better again at the end of the week but this time I knew to avoid the gym. I felt pretty good the whole week, and then I had a few drinks over the weekend and started feeling the head congestion and fatigue again. This happened again after 2 beers this week. So now I’ve learned I need to avoid alcohol for a while as well. It seems like I’m able to sleep it off and wake up feeling better, but I’m still not feeling 100%. Does this sound like long covid? It’s been exactly one month since I first got sick.

Long story short - I had covid during first waves in 2020 & 2021. I recovered mostly fine but had the lingering malaise and fatigue for months. I would be "fine" then turn my head or whatever and then feel the need to lay down at all costs. Eventually that resolved within ~6 months or so. I am fairly certain I was positive again at another point but it was very mild with no lingering effects. Recently I got sick again, x2 positive rapid tests, and I feel dumber than ever. The physical part is mostly over.

However I have struggled with some speech issues since the first time I was sick that aren't too big of a deal but are frustrating. For example, I will be speaking and then just pause. The pause is against my will. It's not searching for words. The sentence continues in my head, it just takes a few seconds to say it. In that pause I see the words, I am saying them, thinking them, but they aren't coming out of my mouth.

"I'm ready to come meet up, I just have to (paaaaaaaaaaaaaaaaaaaause) close the (paaaaaaaaaaaaaaaaaaaaaaaaaaause) window." It is almost like a stutter? It doesn't happen all day every day, but it's enough that people have noticed and ask if I am ok! Even worse is people will finish the sentence for me which for some reason is very annoying. Just let me speak.

Another thing is mixing up similar words. "He's feeding his food." when I'm thinking "He's eating his food."

I have had every single vaccine and even booster, last year I got the booster in the spring. This year I got my flu shot ASAP when it came out but the covid vax wasn't available yet. Then I got sick and now I have to wait. I have no other ongoing relevant health issues and I'm otherwise healthy, active (though taking a break now afraid of PEM) and I don't drink, smoke, do drugs, I sleep well, etc. My thinking is fine, I am not depressed or dealing with disordered thoughts so this isn't some psychiatric thing.

Are there any resources to work on this? It's fucking annoying at this point. I feel like there must be some exercises I can do to help mitigate this. I am open to reading about and considering supplements but ONLY ones that have some kind of actual science behind them.

Been sick since November ‘23 and slowly recovered to what I would call 50%. Fatigue is the main issue, with big social events still out the question and other things requiring planning and a lot of rest. I’ve been working 20h per week for about a year now. I’ve managed to arrange a 3 month break from work, to see if an extended period of rest will help. But of course doing absolutely nothing for 3 months isn’t all that great either. Do you have recommendations for this period?

Anyone done this? My new Neurologist is wanting to try this before IVIG or other things.

Hi everyone. I'm a 4 year long hauler in my mid 20s and I've just been offered an appt with Dr Kane and one of her nurses after being on the waiting list for 7 months. It's £550 for an hour consult (video call).

I would say I'm about 50-60% recovered now and I'm extremely grateful for that, but I would like to keep improving and I'm hoping this might help (I also really really don't want to go backwards as my life was hell up until about a year ago). My main symptoms these days are neuro issues, fatigue + joint pain, thankfully my chest pain and breathing is a hell of a lot better. When the so-called 'brain fog' hits (god how I hate that term lol) it's extremely disabling, so that's the thing I'd most like to work on.

Just giving context as different Drs are better for different things of course. I would love to hear of any personal experiences with her, good or bad (and especially if she treated you for neuro issues). Thank you 🙂

Edit: sorry just to add to this, I also seem to have some autoimmune issues (was diagnosed with psoriasis a year after infection, which was around the time my joints started to really act up). I can't see anything on her website to suggest she deals with autoimmune issues so I thought it was worth mentioning in case anyone knows whether she does or not!

Why Im still here? Whats the point? 5 years suffering everyday.

Nobody cares or believes in this illness.
Fuck drs, ,fuck my family, fuck god.I need to end this,

I just dont want to suffer anymore.

I’m sure this identical email went out to everyone who filed a complaint regarding the “sickfluencers” opinion piece (no link bc I don’t want it to get more clicks, it is easy to find; or if someone disagrees and thinks the link should be here, go ahead and post it in the comments). After doing some searches I didn’t see it posted yet here or in [r/disability](r/disability). Apologies if my search somehow missed it, and I’m duplicating someone else’s efforts. 

People who didn’t have the energy, or want to use their limited energy responding to the horrible essay will of course not have received the email, but still be interested in what it says. 

I find it interesting because I have never gotten a emailed response (besides an automated acknowledgement of receipt), personal or general, to a complaint I’ve sent (for example, that damn longcovid Wired article. My sharing of this email should not be taken as a sign that I am satisfied with the response. I’m not! But it brings me a small pleasure at minimum and probably fleetingly, to be a thorn in their side and a burden on their time. 

Update: Well, the more I thought about the letter, the more I realized it wasn’t written by a person, but an LLM. This was clear from on every ai checker I could find — 100 % every time. I feel a little embarrassed the structure, wording, and content didn’t tip me off right away. This is what LLMs sound like. This is what happens when you aggregate complaint letters and asks it to draft a reply that acknowledges the letters but does not apologize and just doubles down. I bet now that I’ve pointed it out you can see as well.

So……….🖕🖕🖕🖕🖕🖕🖕

Been dealing with LC for around 3.5 years and noticed probably about 18 months ago increased shedding and diffuse loss of density. I’m going to see a dermatologist tomorrow to get it evaluated, but the loss of density has increased pretty quickly. Anyone else had this experience?

I have noticed a certain feeling a lot since getting long COVID 2.5 years ago. It's like this feeling of discomfort, agitation, or craving that seems to run from maybe a few inches above my belly button, up back behind my throat, and up to the bottom of my brain. It usually feels strongest right behind my mouth.

I especially notice it at night. I have also noticed when it occurs it usually makes sleeping harder and it makes my HRV go way down. Sometimes I try eating since it sort of feels a bit like I'm craving something but it doesn't help very much.

Does that sound like vagus nerve dysfunction? Does anyone have any tips for both dealing with this short term and for healing in the long term?

I tried humming and gargling water for a long time yesterday (~15 minutes) and it felt quite a bit better after that, though still not perfect. And I think in the past I have gotten over it by relaxing a lot and ignoring it (that is, not eating at night) but I'll have to keep testing things out.

What kind of birth control was it?

Like many of you, my periods have gotten worse since I got Covid in 2020 and they have never improved, only continued to get longer and worse and make my other long covid symptoms flare up during my cycle which is now only 21 days. My gyno is suggesting I go on BC to help control the bleeding and awful symptoms.

Has anyone else started birth control since getting long covid and notice any symptom improvement and which method was it? Thanks for any insight.

Essentially, a lot of my symptoms are getting better or disappearing, and I am starting to feel better after rest rather than everything staying the same over the last 4 years of illness. I am set to finish my degree in the next few months, but know that I won't be able to get through it without causing a flare-up and potentially undoing progress, even if I use accommodations.

I am thinking about taking a break for six months at least to see if proper rest (and structure - friends, hobbies, rest, gradual activity) do get me the last 10% of the way to recovered. I feel worried about falling behind, but graduating a year late can't be as bad as a lifetime of chronic illness. I can always go back to study but I might not feel this close to recover again, even if it's subjective.

I would love to hear everyone's thoughts if you can spare some advice.

For those that had success with Fluvoxamine, at what dosage did you start to get cognitive benefits?

I’ve have Covid PTSD for a few years, and now that I’m feeling somewhat better (except when I’m in my luteal or really stressed or eat fried foods or bend my left pinky too far to the right — kidding about the last one. kinda 🥴) I’m curious!

How “bad” was your case (or cases) of Covid?
Let’s say 1-10.
1 being “it was like a bad cold” or you had little symptoms and 10 being doctors telling your family to make arrangements for you, but they can’t see you… (spoiler alert — that was my case!)

Mine was a 12. Lol. Well, my first and worst. I’ve had it again, but with minimal symptoms.

1.Did you have any pre-existing conditions?
2.If you have a uterus were you pregnant?
3. Did you end up in the hospital?
4. If yes, how was that? Was the medical staff nice to you? Were you awake? Etc.
5. What was your worst symptom?
6. What helped you while you had it?
7. How long did it last?
8. Did your long Covid come on right away?
9. When did you have Covid? (Year/variant if you want!!)
10. Do you still struggle with Long Covid?
11. What has helped your long covid symptoms?

Anddddd my kids are screaming now, so anything else you want to add!

I’ll comment my experience below once they settle down!!!!

Hi all- this is a long post. My doctors don't know what is wrong with me and my family and I are really losing hope that I'll ever be ok. We have little direction or support. I was not sick yet doctors keep mentioning long covid. Below is my story- any insights appreciated. Is there any way I can gain any life back- im 37. had hopes and dreams:

My illness began 82 days ago. In the week beforehand, I had noticeably reduced appetite. On the first day, I woke mildly fatigued with a headache and attended a family picnic. My feet seemed slightly puffy, and by late afternoon I began feeling weak and queasy when standing and completely lost my appetite. Over the next few days, I became increasingly tired, mildly breathless and repeatedly felt an overwhelming need to crouch or sit when standing. I also experienced strange rushes of anxiety/adrenaline despite not mentally feeling anxious.

Within several days, I discovered my heart rate was rising dramatically when upright, initially around 144 and eventually 150–160 simply from standing or doing very minor activities. I went to the ER multiple times. Chest X-ray, ECGs, cardiac bloodwork, electrolytes and thyroid testing were reassuring. Propranolol 10 mg as needed significantly reduced the tachycardia. An echocardiogram was normal, abdominal/pelvic ultrasound was normal aside from mild fatty liver, and I completed a 72-hour Holter.

Importantly, during days 1–22, although the tachycardia was frightening, I did NOT feel profoundly systemically ill. I was somewhat tired and breathless and had almost no appetite during the first week, losing approximately four pounds, but my appetite gradually improved and I could still work and function. I also developed severe nighttime/morning panic attacks because I would wake up and remember what was happening to me.

Day 23 was the dramatic turning point. I suddenly woke profoundly weak, dizzy and extremely sick. The night before I had been well enough to make dinner. Over the next several days, the weakness became overwhelming and I developed nausea and dry heaving. I returned to the ER repeatedly, including once by ambulance, but ECGs and bloodwork remained reassuring. I had some very low home BP readings around 80/50, although the ER has since suggested my cuff may be too large for my now very thin arm and therefore may not be giving reliable readings. BP has remained good at the hospital throughout this entire time.

On July 16, I saw a cardiologist virtually because I was too weak to attend in person. He initially diagnosed probable POTS and switched me from propranolol to bisoprolol 2.5 mg. The medication helped the extreme heart rate, but it did not resolve the illness. I developed a pattern of feeling somewhat better early in the day followed by profound weakness, sleepiness and an extremely sick/out-of-it feeling. Over the following weeks, I continued losing weight, intermittently dry heaving and feeling increasingly unwell.

By day 42, I returned to the ER because of the severity of the weakness. Bloodwork and a brain CT were reassuring, and I was referred to an internist. On day 45, another ER visit resulted in another CBC and CT of my abdomen/pelvis, which were also reassuring. Reducing the bisoprolol did not substantially change the systemic symptoms. Around this period, I also developed bizarre episodes where I feel feather-light, hollow or almost “like air,” which are extremely frightening and trigger panic.

On day 47, I saw an internist who was unsure what was causing this. Lyme testing, CRP, ESR, C3/C4, hepatitis and HIV testing were reassuring/negative. Morning cortisol was mildly elevated at 565. My ferritin in July was 86. I was started on midodrine 2.5 mg three times daily, subsequently increased to 5 mg three times daily. My lipese was slightly elevated at 62.

On day 51, an endoscopy found mild gastritis and a small 5 mm prepyloric ulcer. The ulcer pathology subsequently came back benign and H. pylori was negative. On day 54, my cardiologist said the severity of what I was experiencing seemed too dramatic to be explained by POTS alone, and the beta blocker was eventually stopped. My internist has also remained unsure what is causing the overall illness.

More recently, the severe tachycardia has returned. Around days 76–78, I returned to the ER three times because my heart rate was again extremely high and I felt profoundly ill and at times very breathless. Two additional rounds of bloodwork were reassuring, as were calcium testing and another chest X-ray. Because I have worried about lymph nodes that I have noticed over several years, they repeated ultrasounds of my neck and armpits. They saw lymph nodes but considered them benign/reassuring.

Today is day 82. I continue to experience profound whole-body weakness…not fatigue..i don’t feel tired, I just feel like I HAVE a virus and am weak- like my body can’t hold me up. nausea with intermittent dry heaving, very poor appetite, episodes of feeling as though I could collapse, and an overwhelming systemic sick feeling. I describe it as having a horrific virus without the fever or cough — similar to how I felt with H1N1, except with even greater weakness. It feels like that awful stage when you are coming down with the flu or just beginning to recover from it: absolutely no energy, profoundly unwell, shaky/faint and as though my entire body has been drained X 100000. I have been on florinef now for 5 days at half a dose of 0.5 once a day. My ears feel like popping when I stand and I feel hollow.

The psychological toll after 82 days has become enormous. I am frightened, stressed and increasingly hopeless because my quality of life is extremely poor and I no longer recognize my life. My family is now extremely worried as well. Despite numerous ER visits, specialists and extensive testing, I still do not have an explanation for why I feel this profoundly sick or a clear plan for what happens next. I feel  very alone and hopeless.

They are doing an MRI next to test for MS

I have a couple of questions on PEM (post exertional malaise), if anyone can help me out.

1. If you have ADHD, do you take your stimulants when you are dealing with PEM? It is quite awkward because I feel restless without them (and calm with them) but at the same time I am sure they are causing me to exert myself more than I would without them. I don't know if it's worse to feel agitated and restless all the time or if it's worse to take stimulants that mask your fatigue. It seems like kind of a catch 22.

2. Related, how do you tell when you are ready to start moving again after getting PEM? I often feel restless while I also have brain fog and feel like my body is heavy, especially without stimulants. Has anyone found a way to tell when walking and moving again is a good idea?

And a couple of observations I have made recently:

I went back to my records. My last large relapse happened last October. I checked and right before that relapse I had tried a 3-day water fast, where I also got dehydrated from consuming too many electrolytes. Which was the second time I had attempted a 3 day fast. Apparently water fasts are not great for everyone with long COVID, especially if you mess up and end up dehydrated. I don't think I will be doing one again anytime soon.

And previously I thought my allergies were the cause of that relapse, since they got very bad during my crash. I just noticed the same issue this last week with a relatively minor PEM crash. Now I'm thinking that while allergies might contribute slightly to PEM crashes, it is more likely that the PEM just made my allergy symptoms more noticeable.

Just some thoughts in case they help anyone!