r/LongCovid

Hi. I caught covid in 2024 then again in 2025. The first time I had it i experienced the worst rls (restless leg syndrome) it was constant for the first few days, my leg muscles became sore from constantly moving. Since then I developed a weird sensation when i walk. It’s a mixture of vertigo and a feeling of staggering. It seems to be worse when I’m stressed and in busy environments. I’ve never suffered with rls at all before i got covid and its been constant ever since. I’ve had every blood test there is, ecg, blood pressure tests and lastly an mri. All came back normal. I’ve recently noticed an increase in body jerks as well which seem to sound similar to myoclonus. I’ve tried all the obvious vitamins/supplements.magnesium, b12, vit d, iron and others and nothing helps. I’m wondering if anyone else has gone through something similar and if they have any advice? Thanks!

Things have gotten better, no doubt. But I still live with fairly severe cognitive dysfunction every day. Mostly in the form of a spacey, stoned/drunk feeling. Kind of like I'm disconnected from everything. Some days it's better than others. But most days I just push through a thick haze of disorientation, tinnitus, and perceptual issues (everything looks weird and flat, and I can't quite make out the details of the world).

At this stage, do I accept that I have brain damage and move on? Or should I hold hope things might one day improve? Has anyone had this set of symptoms and gotten better after two years? Hoping one day I can feel more present and embodied. Apart from everything else, it's just so utterly boring feeling like this all the time.

When I say I titrated meds slowly… I mean ridiculously slowly and I only figured out to do this after suffering for about 4 years.

I finally learned I needed to trick my body into accepting meds and it’s a damn good thing I figured this out around the time I trialed Ketotifen because it’s a game changer.

What you first need to understand is that at this point I was only eating about 6 foods with just salt and no other spices because everything - including the food I was still eating had my body freaking out. That’s how screwed my body was. Food, stress, air … everything was a trigger and the hell it triggered was insane.

I had 27 symptoms I’d counted at one time. 27 serious symptoms like ataxia preventing me from walking without assistance, and burning bladder syndrome - I was in diapers for this.

Diapers.

The mast cells in my bladder area were freaking out.

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Before learning to titrate my meds - in desperation, I took prednisolone for about 6 months (never more than 10 mg a day, usually 5) - just to avoid being bed bound - and at the lowest possible dose that was moderately effective for me which was normally 5 mg.

About 5 mg a day helped me tremendously to function, though far from ideally, but I knew I couldn’t keep it going long term due to the overall negative impact to my body.

So, I used the prednisolone to help me on-ramp the Ketotifen first. My thinking was to keep the prednisolone going to keep my body from rejecting the medication and to start with a medication that would stabilize my mast cells (Ketotifen).

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I started Ketotifen with one drop. I needed this to work and I’d learned that I’d need ketotifen to integrate into my system without freaking my system out.

One drop for one week.

Two drops for two weeks.

Three drops for three weeks.

All taken before bed.

The process was slooooow. And it’s the best thing I’ve ever done for my health. If I’d tried to rush it, my body would have freaked out and I’d be in the same cage of ailing health I was in for years.

Today I take 4-5 mL per day. It doesn’t make me sleepy. That is ONLY because I titrated painfully slowly - because let me tell ya - everything makes me sleepy.

I have what is called “drug hypersensitivity” and altered blood–brain barrier permeability – my blood brain barrier may be more “leaky” or permissive than usual. I also have an increased neurotoxicity susceptibility – meaning I experience neurological side effects at doses most people tolerate.

So when I tell you I titrated painfully slowly - it was my only hope.

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Once I got the ketotifen going at full dose (2 mg per day - and this took many months to reach 2 mg) - only then did I slowly reduce the prednisolone until I reluctantly stopped it entirely. I remember clearly being so afraid I’d have to jump right back on the prednisolone.

But to my astonishment, the ketotifen was working considerably well on its own - enough to keep me functioning moderately well without prednisolone’s support.

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Then I began trialing other meds and, through a number of trials that did cause a fair deal of suffering at times, I found the meds I’ve listed (Ketotifen, rupatadine, and pantoprazole) as working for me.

There was no fairy godmother.

I also learned to treat myself as a science experiment. With each drug trial, I would state my hypothesis and record everything I could observe daily.

I will forever take this approach to my health care because I can tell you one thing - doctors weren’t figuring this out for me. They were doing the opposite- telling me it was anxiety and depression. Denying the pain. Never following the thread of ataxia and burning bladder syndrome to its root cause. That was the worse part of it all - dealing with medical “professionals”. Over 4 years I probably saw about 50 doctors - taking long breaks in between to recover from the mental strain seeing them resulted in. My favorite doctors were in Greece. They too didn’t know what was going on, but they were compassionate - and compassion goes a long way when no one has answers and it’s all you’ve got.

It was actually my long time psychologist who suggested this was long covid and MCAS. Then, I learned through AI it was also POTS and EDS.

My psychologist suggested I attend a MCAS meeting - you can find those online - and that meeting changed my life. I saw how people were treating their illness so I went to a country where I could find the meds they were taking - Serbia. Ketotifen is about $3 a bottle there for 100 mL. They have rupatadine there and I don’t think that’s in the USA. So rupatadine is both an H1 antihistamine and a PAF receptor antagonist.

The PAF-blocking activity may contribute to its anti-inflammatory effects, although the clinical importance of this compared with H1 blockade is still being studied. This dual mechanism is one reason rupatadine is sometimes considered unique among second-generation antihistamines.

The pharmacies in Serbia aren’t strict about prescriptions so I was able to quickly trial meds and sort through which my body would (likely one-day) accept. This would have taken me years if I’d have had to see a doctor, get a prescription, find it blows up my system … over and over … it would have been years until I’d finally discovered what works for my system. Years and more money - oh, the cost of this illness has been EXTREME.

In Serbia, and keep in mind I’d already had this illness for four years so I’d learned a lot about my body and meds in that time, I could manage my own healthcare. That was key. I used AI to determine if something just needed a few weeks for my body to adjust, or if it was unlikely to ever accept the med. AI isn’t perfect, but it was very helpful as I questioned every reaction throughout my process.

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Also, I use AI to check AI. I don’t just trust what it spits out. I also ask it for links so I can see how it’s arriving at its conclusions.

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Also, I wasn’t trialing what is considered to be dangerous meds, and, on top of that, I started everything at the most ridiculously low doses. Like a speck of a pill for example and even that could be like throwing a grenade into my system at times. These are not scary meds I was trialing either - simple things like, for example, Pepcid AC from the USA completely screwed my system for about 3 weeks. Something so harmless - that would have been as harmless as a glass of water to my body when I was healthy years ago. SMH

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So - that’s how it came to be that I learned this technique of minute titrations.

That is how I learned to set up my own personal drug trials as science experiments.

That is how today I am going to go outside in 95 degree weather without totally unraveling, I will eat cherries without becoming ataxic and feeling this pressure in my skull and this infuriating feeling of ants crawling over and around my scalp, and I will go to the gym and lift heavy weights to bring my bone dexa numbers back up after having been malnourished for so many years - unable to eat a balanced diet.

That was a lot to share. I’ve held back on doing this until I could trust what I was doing would last and continue working. I hope this story helps someone. I hope they read it and it doesn’t take them 4 years and as much money as I’ve spent to figure out the strategy of tiny titrations and in treating their body as a science experiment.

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Also, I am very grateful to Redditors - the last piece in this part of my wellness journey. I learned a lot about the meds I was trialing through people here talking about their experiences. It truly has been a godsend. A huge THANK YOU to all who contribute on Reddit. You matter.

Be well.
❤️

Just wanted to throw some hope out there for others, as I know how horrifying my life and outlook were 18 months ago.

Long story short, I developed PEM type of long covid in March of 2025. Truly, it was a living hell. There was a day when my wife had to come home from work because I was slumped over on our couch basically unable to move- total weakness, fatigued muscles. Horror.

From there I experienced many more days of hell- mostly cyclical reruns of exertion, poisoned muscle ceiling, horrifying PEM for week plus, DOMS, reset. Over and over again. At one family dinner during a terrible PEM cycle, I almost went to the hospital, again slumping over in my chair. Just hell.

I am lucky in that people at my work had some idea of what I was going through and were fairly sympathetic. Nonetheless, it derailed my work life pretty hard. There was stretches I was off for 3 weeks in a row. Obviously my social life went to zero, and my wife had to do everything for us and the kids. It was terrible.

I did a very careful exercise routine, and by exercise I mean like just doing some normal life stuff. I would go through the PEM cycles and each time I would get a tiny bit more resilient.

Each time I got sick with a household cold virus, it would set back my progress and my exertional ceiling.

Then about 8-9 months in….. I got shingles. It was horrifying. Nonetheless, this seemed to in some ways reset my immune system or something. All of my flat warts I had on my arm for years cleared up after. And then once I reached decent recovery, I could tell there was some hope with the way I felt.

Well then, at about month 14 or so, it seems as though my body’s ability to run on aerobic respiration, oxidative phosphorylation, finally clicked. Like I jumped over the threshold or something. At this point, PEM from exertion just didn’t happen anymore. Just went away. Now, what I did still experience was almost like a spasming of my muscles if I used them in a high intensity short burst type of way (type 2 fast twitch fibers). That slowly got better over time. Also what I did experience very roughly was just very intense delayed onset muscle soreness (DOMS). For instance, a day cleaning the garage or trimming the yard would make me feel like I just did a whole day of intense body building at the gym. This also slowly got better.

I would say I am about 90% now, and will consider myself 95-100% once I reach the fitness levels I was at prior to my illness.

Famotidine and loratidine seemed to help me- I took these since I suspected mast cell activation syndrome (MCAS) was playing a role. Also, to help my muscles and mitochondria, I stay up on my vitamin C for anti inflammatory reasons, and also keep up on my protein through eating meat and protein shakes.

TL;DR: I had long covid for 18 months, I’m not 90% recovered after thinking I was doomed for life. AMA.

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

Ive had issues with sleep for years ever since 2022 after getting covid back in December 2021. I wake up feeling exhausted and dry mouthed for the past 4 months and was wondering if im suffering from inflammation. Iv had 3 blood tests and nothing had shown prior and only now am i getting assessed for sleep apnea. But i’d really want to know what supplements should i take to detox from covid and getting the shot since this is probably a question a doctor will never answer to because ive suffered for the past 4 years to this

I’ve been struggling with LC for a year now I literally got infected back in June had a pretty severe case I went on sick leave for two weeks once I tested negative I came back to work which was a huge mistake made things 100 times worse so yeah haven’t worked since then. I’ve applied for benefits for the first time in my life and I feel embarrassed like will they think I’m lying or won’t believe me, has anyone else struggled with same thing?

I’ve read good and bad things about this med.
Based on my symptom profile I think it has a good chance of helping.

Most of my symptoms are neurological + dysautonomia with flare ups that cause migraines, pins and needles, dizziness, and dreadful fatigue and brain fog. From some research it appears these are some of the symptoms that have been alleviated the most for those it works for.

Anyone else on LDN have any advice? Or anything you wish you knew before starting on it?

Question for anyone but especially for those in Europe. We recently had an horrible heatwave and the next one is coming in a day of ten or less.
Now my thing is this, during the heatwave I have taken everything slowly and didn’t do anything much. It was difficult and challenging but got through it. But now after I get heavy headaches and very sore muscles in my legs and hips. Hard to explain but it’s like my whole body is just sore and tired but I feel like I’m in an blender or something. Can get any grip on my symptoms and my normal way of getting through the day isn’t working. Does anyone else feel like this?

(I have asthma and lc to so it might not only costs by fibromyalgia, but probably most of it. The only thing I think is lc; I can’t really eat much food because I can’t stand any smell).

Reaction for all of you:
So many people respond to this so quickly. Thank you for sharing and I hope you find a way to the heat now and in the next heatwave(‘s). Wishing everyone well soon. And a virtual
hug from me too you all from The Netherlands.

I have pretty common Long COVID features with brain fog, fatigue, headaches and some mild-moderate autonomic heart rate stuff (well controlled on guanfacine). Overall in a very good place compared to a year ago. Tirzepatide has been a real game changer.

But I recently had a huge crash with no identifiable trigger. I am used to the fatigue, even when it is crushing. But I had a return of an old symptom- leg weakness. I have not had this in 2 years. Last time it progressively got worse following a misguided weightlifting session. This time it was 100% unprovoked.

The 1st time it happened it took about a month of high dose prednisone to go away following about 2 months of progression. Then another 8 months to get off the prednisone- fun. Started the pred as a last ditch effort to maintain the ability to walk. This time it went away with only 4 days of steroids, though it’s not 100% gone and I would benefit from steroids now. But on the balance, I prefer not to take them. I’ll revise that when I fall and break a hip.

Asking as I have not seen a post discussing this. I only know one Redditor who had something similar, but that persons is persistent, so probably (possibly) a different cause even though still in the post COVID shiz show category of new and interesting life experiences.

I have an appointment with my PCP to make a plan for getting a workup plan before steroids if this returns. Open to what others have seen.

I started tirzepatide three weeks ago at the suggestion of my LC specialist. I am currently at 3mg. I have lost 10 lbs but I am not noticing any improvement of symptoms. In fact I have been in a crash for most of that time.

How long did it take you to feel improvement? At what dose?

I know a lot of people and some of those people know i have this affliction with all these weird mysterious symptoms and flareups. Yet no one i know or any of their friends or family have come back saying they have the same or similar issues?

How is it just me in my entire circle?? Thats part of the reason people keep saying its all in my head. I dont blame them but i feel so isolated and helpless. Sure its comforting knowing you guys exist. But how many of us are there? Its like an elite exclusive club! A sick club.

My heads so foggy i have to reread and make sure im writing coherent sentences. Ok gnite yall feel better.

So I just found out a few months ago that I have long Covid. I am a 22F. I got covid back in June of 2022. My main problems include MCAS, POTS, and HSD. My POTS and HSD I believe I had to some degree as a kid, but nothing to interfere with my day-to-day life. It got significantly worse after I got Covid.

Anyway, my doctor said that he has seen people start to improve… men typically 2 to 3 years after their infection and then women typically five or more. I was wondering if anyone has started to improve health wise? If so, how long has it taken?

After almost five years of bouncing between specialists, I finally found a doctor who actually diagnosed me with Long COVID instead of telling me, “Everything looks normal.”

For context, I’ve seen cardiology, pulmonology, neurology, GI, etc. Most of my standard testing has been reassuring, but I still deal with fatigue, PEM, brain fog, air hunger, chest tightness, migraines/visual symptoms, and the usual roller coaster that so many of us know.

This doctor has an MD/DO (not a chiropractor or naturopath), accepts insurance, and also had Long COVID herself. She ordered some testing that most of my previous doctors never did, including a spike protein blood test, and based on everything she put together, her working diagnosis is Long COVID with ongoing immune dysregulation/inflammation.

Her plan is:
-Continue methylene blue (already started)
-Consider Thymosin Alpha-1
-Consider BPC-157
-Start bovine colostrum (Cowboy Colostrum) for gut healing
-Daily iron to get ferritin above 70
-One Brazil nut daily (my reverse T3 was high relative to T3)
-Avoid sesame (confirmed allergy)
-Recheck symptoms in 6 weeks and repeat labs in 3 months

I’m not posting because I think this is the answer. Honestly, after five years, I’ve learned nobody has all the answers. But this is the first doctor who’s actually given me a cohesive plan instead of another referral, and that alone feels like progress.

I'm reaching out to y'all because I'm curious if:
-anyone here tried Thymosin Alpha-1?
-BPC-157?
-colostrum?
-methylene blue?
-treating your Long COVID improve your cholesterol or other inflammatory markers?
-anything in this plan that you’d personally question or wish you’d known beforehand?

I’m planning to give this an honest shot, but before I dive in I’d love to hear from people who’ve actually been down a similar road.

Thanks in advance!

Hi! I’m not sure where else to ask this, but I need some help.

So I got Long Covid back in Jan 2024, and have been pushing myself to work (I work as an Auditor, doing inventory for different retail stores, with a ladder and hand scanner).
I’ve worked together with my boss to limit my work hours to 4 hours a shift, only working 3 days a week. Essentially just 12 hours a week. Working any amount of time is pushing myself, but past 12 hours is *really* pushing it.
In December, I had a one-on-one discussion with my boss about the new changes to productivity, with her telling me that I must count fast enough to reach my numbers, and if I don’t, I could face disciplinary action up to and including termination. I asked her if she would take my health conditions into consideration, and she told me “Don’t worry, we will take that into account. I’ll be working together with you on that”.

Recently my shifts unexpectedly have dropped to only 2 days a week, and I got an email from my boss basically saying “You will be given until August 14, 2026, to achieve your numbers.  Failure to make them by this deadline may result in disciplinary action up to and including termination.”

I don’t know how I should advocate for myself or what I should say in response to this. My performance is directly hindered by my health condition, not because I’m not skilled enough or just too lazy to make my numbers. Does anyone know what I should say or who I should talk to for some help…?

So idk what is causing this recent flare, but I’ve been experiencing leg weakness, internal buzzing sensations, anxiety is through the roof, swollen hands when I wake up, waking up out of my sleep in a panic, ear fullness, tinnitus, and visual snow. Please tell me I’m not alone in this, it’s been 3 going on almost 4 years in October since I’ve been dealing with this & im at the point of giving up. When will this end ? When I was pregnant with my youngest the symptoms subsided I thought I was free of this bullshit and I got no answers from why they went away while I was pregnant. Has this happened to anyone else??

On that note, calling exertion crashes Post Exertional Malaise is like saying a person with a severe peanut allergy having a reaction after eating peanuts is experiencing "meal-induced discomfort."

No wonder nobody takes it seriously.

(57M) was lifelong smoker until 2 years ago.(still smoke herb daily)

Got COVID January 2022, noticed about 6 months after infection that my smoker's hack (which is really a clearing of the throat and will produce a little bit of speudum) disappeared completely. I was still smoking same amount, but the hack just stopped, completely. At the time, mentioned this fact to a few people and no one seemed to find it odd except me.

Maybe about 2 months ago, I realize my hack, or clearing of the throat, has returned just as it was very many years ago.

AOE experience something like this, or heard of this? Anyone have a physiological explanation?

I am F23, was going to be getting engaged in later 2025 months, got sick in June 2025. May be getting engaged this August, but am unsure about if I should get married yet or not. Has anyone had a wedding while sick? I am worried I’ll regret getting married if I am unable to have the most amazing day that I dream of and going on a honeymoon. I want to get married next summer, but am unsure where I’ll be healthwise. I have made a lot of improvements since I got sick one year ago, but I am still far from my healthy self.

Do I just have a super long engagement and wait until 2028? How do I go about deciding since being sick is unpredictable with when I’ll be better?

Also, we want to have a wedding a few states away(destination wedding). I don’t know that I’d be happy with settling.