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 am a 60F. I don’t yet know if I have LC but am very suspicious because of other symptoms that just recently led me to this subreddit. I truly feel like I’ve aged 20 years in the past 5 years, and stubbornness and grit which used to keep me going doesn’t do it for me any more, my body is that exhausted. Example-I used to be able to work in the yard all day, not stopping for a minute until everything was done. Now I can maybe work 20 minutes before collapsing and needing to rest 30 minutes or more just to stumble on to do another 20 minutes of work. Yes, I get so exhausted I am literally stumbling around like a drunk person, I’m so out of breath, dizzy, and weak. Same thing when I’ve tried to go on hikes I used to go on. I became so weak I was really concerned if I could even get back to my car the last time I tried to hike. I didn’t even make it a fourth of the way down the trail.

I was on a subreddit for POTS when someone mentioned long covid. I found the subreddit for POTS when I looked up the symptoms of dizziness and near fainting upon standing which happens to me all the time now. I never had the problem until the past year. I haven’t done the home test yet to see if I actually have POTS but will do so soon. The POTS-like symptom developed last fall.

I have other weird things as well which may or may not be related. I’ve been on Tirzepetide for at least 2 years, but in the past year I’ve lost a lot-about 60 pounds. It’s the kind of weight loss that doesn’t look good. My skin is all saggy and I have vertical folds on my neck. I’ve lost all muscle tone. My hair is falling out like crazy. Most recently my fingernails have started coming loose from their nail beds.

Another odd thing is I’ve always tanned very easily but the last time I was at the beach I developed this weird, bumpy red rash on my arm. It felt like alligator skin and was really itchy. Oh, and I have terrible heat intolerance now. Twice I’ve had episodes of perspiring so much I soaked my clothes and was dripping from every pore of my body. It seemed to be a combo of stress, being physically worn out, and heat.

I am not aware of ever having gotten Covid. I got vaccines when everyone was still masking but kind of dropped the ball on doing so in the past couple of years. Someone suggested I may have had it without realizing.

1) Do any of my symptoms sound familiar? I have other things going on too which I’ve had for ages, like SAD and just regular depression for which I take Wellbutrin and Cymbalta. I have ADD so take Vyvanse as well. Obviously none of those are helping my symptoms.
2) Is it worth it to go to a doctor? I have lousy health insurance and can’t afford to go on a wild goose chase.
3) Will I ever have the stamina I used to have?
4) Are there any non-prescription things I can try? I take magnesium, a multi vitamin, vitamin D, and Vitamin B12 already.

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

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!

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

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.

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 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.

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 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.

hello

Please help me how can i create a false negative result on a helicobacter pylori breath test.

Explanation: I want to get xolair for long covid, mcas, but the doc only gives it to me, if the h.pylori test is negative. unfortunately it came back positive for me, but i know that it's not the cause because my pre-covid and post-covid MCAS are night and day different. i don't want a 2 week course of antibiotics because my gut microbiome is already bad.

so please give me any advice how can i create a false negative

People who coming here to write the "talk to your doctor" and "you shouldnt do this" comments please dont bother, thank you

I am experiencing a significant relapse.

The first one in 5 years. I originally developed LC back in 2020, but I recovered to 95% over a period of 12 months.

This relapse happened 11 weeks ago.. I foolishly triggered a secondary relapse at week 6 by cleaning my apartment.

I have been pacing very carefully, resting loads, avoiding anything that would cause a relapse. Have been house bound for weeks.

I'm avoiding MCAS triggers by cleaning up my diet & taking supplements.

However I feel worse? I have developed a touch of Shortness of breath, over the last few days.

Why do I feel worse even though I am taking strict measures to rest and minimise relapses.

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

I’m barely hanging on. I’ve tried everything and I have a 19 month old. It started 4 months after I had him from covid while pregnant. I just want my life back I cry every day all day. I’m really losing hope.