r/covidlonghaulers

I’ve tried nearly all of the treatments that have been popular in the LC community and support group I’m in. I’ve tried aspirin, beta blockers, fasting, keto, gluten/dairy free diet, low histamine diet, nicotine patches, IVIG (for 9 months), gabapentin, Lyrica, ketamine, antihistamines, LDN, ketotifen, GLP1s, ivermectin (yeah, I know), cromolyn, etc. probably forgetting a bunch.

You name it, I’ve tried it (unless it was too high risk).

I’m now incredibly discouraged and burned out. I continue to get sicker and sicker over the years - was mild for 2-3 years, then took a bivalent booster and that really accelerated my decline. I’ve been disabled/unable to work since 2023.

I know I shouldn’t feel this way and I’m happy for everyone who’s found relief but whenever I read about someone finding something that helped them, I can’t help but feel even more discouraged.

It’s like I’ve put all this effort and research and endured side effects (some really nasty ones with IVIG) and have nothing to show for it.

What else is there to do when nothing works?!

My question for fellow long haulers is the people that you know- spouses, immediate family, extended family, friends- for whom covid was nothing more than a few day cold or flu- what is their perspective on covid?

I ask because it seems like the world has completely forgotten about it- and therefore is. Also seems like the majority of anti-vaxxers don't just not trust the vaccine, but they act as if covid itself was harmless or even fake. There are so many of us on these long covid groups- and there has been for 6 years- and I think how is it that all of these people could have been affected by this virus this way yet the country as a whole has just moved on and doesn't care. You would think that almost every person in the country would know someone whose life became screwed up because of covid, whether that was short-term or long-term. So I'm very curious as to how these people who you know, who know someone who became and stayed sick from covid, feel about "things."

Posted my reason for asking and my personal experience in the comments.

!!! switching doctors from here, relaying what the ER told me, and hoping to figure out why my jaw ears and head are in never ending pain

I have a strange residual symptom and wondering if anyone else has dealt with this. Sometimes my throat will fill with mucus when I’m talking a lot or after quick movements. It’s almost like I start choking on my own spit. I’ll need to spit out the mucus or I’ll sit there struggling for a while, coughing like I’m a pack a day smoker.

It’s weird because it doesn’t happen during continuous workouts. It only seems to happen when I’m rushing or doing some quick movement (like 5 mins of quick cleaning). It happened when I was rushing through the airport recently and I was so embarrassed. Cough drops and water don’t really help - it’s a deeper feeling where I’m gasping for air/choking.

I've missed a lot of days in 2026 due to feeling ill (either flu-like symptoms or debilitating fatigue) and my job finally gave me a disciplinary warning via email today.

I work only 16 hrs a week and even that seems like too much. I work with autistic kids btw for context.

Should i just quit? I'm not working much and I don't want to be terminated. I understand their POV, but there's not much I can do when I don't choose to feel so tired every day. I rest sometimes in my bed for days at a time and it makes 0 difference. Fuck this illness.

Just needed to process. I've had this for three years now. I had about a year of remission, and then all my symptoms have come back in the last six weeks after getting a virus. Migraines, memory loss, SOB, exhaustion. I've been having asthma like symptoms so got a PFT and today had the methacholine challenge. Guess what? My lungs are normal. I've had lung tests, heart tests, and they're all fine.

I should be used to it by now, but it was just so disheartening. My doctor was actually great though- he immediately affirmed for me that the tests didn't show it as asthma because it is COVID related. He worked on one of the big COVID studies and has been very affirming, despite being honest that there's no known treatment or cure that works for us.

I'm just so tired of it. I'm 42 and was in great shape before this- starting my own business that's been very successful, and I was so active. Now, I might have 2-3 hours of being able to function somewhat normally a day.

that's all. I'd just gotten my hopes up and was disappointed again.

Has anyone gone and had good success with help? And who did you see/where did you go/what did they do? My neurologist is putting in a referral. I am mainly neuro with vision issues, facial nerve stuff, vestibular issues, jerks etc. I also have some assumption that I have some EDS stuff going on.

I just wonder if this is as common for young people as well, Ty

Has anyone recovered from this shit by raw dogging it? My doctors in Canada won’t prescribe LDN or LDA and I’ve only really tried antihistamines which I think dried the hell out of my eyes.

Bedbound for 7 months, every test comes back normal, in absolute hell and can’t even shower, lights blind me, floaters, flickering lights in vision, glares, starbursts, sounds ruin me.cant watch tv or play video games because PEM.

I really don’t know what to do anymore, I shouldn’t even be using my phone but I’m desperate. Neuro crashes are absolute HELL

I’m 63 and am on year 3 of LC. Life was moving at a slow, fatigued pace of all the usual complaints. About 2weeks ago the body pain started. I hurt all over. At first I blamed some crazy barometric gymnastics as storms moved in and out of the area. I noticed I was excessively fatigued after meals. It didn’t matter what I ate and as if the matter of digestion was taking all my energy. Then I felt like I was living in the bathroom.

Now I can hardly walk or sleep due to the body pain. Then I did something absolutely stupid but eye opening. My adult son a beer home for each of us to celebrate the 4th. I haven’t touched alcohol for years and it didn’t sound appealing but I didn’t want to knock his gift down. MISTAKE MISTAKE MISTAKE. Half way through that can I started feeling really ill in a way I can’t explain but it felt like hell inside my body. The chills hit mercilessly and my head started pounding. Low grade fever. I wrapped up in my afghan (90+ degrees outside) and waited it out. It all subsided after a few hours except for the fatigue and this damn pain.

I don’t know what’s happening. I have to vent because two solid weeks of sleepiness and the dread of having to move is also doing my head in. I should probably mention that I have a strong distaste of doctors since 2023 and I’m sure you know why.

(Had to switch doctors recently and on intake I to the PA I have LC. She got an openly stupefied expression: “What’s THAT??!” I wanted to cry at her skepticism. It’s exhausting and disheartening. So I’m laying here trying to find some comfort so I can sleep but as usual it’s not coming.

I’ll be undergoing a colonoscopy in a few days due to some crazy GI issues. I’m nervous about crashing or ruining my progress, especially since testing revealed a depletion of my good gut bacteria. Any experiences here?

Been sick with PEM, fatigue, brain fog, anxiety, since 2022. I’ve tried so many things, seen a couple different doctors. The latest has been treating me for about 4 months now and is recommending stem cells. They do it at their clinic in California near me, and I trust their sourcing and everything. They have been very trustworthy so far and have a very good reputation. But man it’s expensive. He said I could go international and probably get it for half the price, but obviously he said you can trust our treatment/ sourcing more.
Has anyone tried stem cell therapy? I feel like from what I’ve seen it’s not overwhelmingly effective in LC but like many of you, I’m desperate.

Hi all,

I hope everyone is doing as well as can be expected!

I recently got my SFN biopsy results back as positive. I’m now beginning the process of trying to get IVIG covered.

My pain is honestly not managed well - codeine is the only thing that works. I have to alternate between LDN and codeine so it gets a little complicated/not ideal.

I feel as if my pain is getting worse and spreading up the legs and arms and I am not sure what to do. I haven’t gotten a straightforward answer as to how I can slow things down? or at least not make things worse?

Is activity good or bad? Are there other things I can be doing to support nerve regrowth?

Curious if anyone who has an SFN diagnosis has an opinions.

much love

My immunoglobulin levels have been steadily dropping in the two years since being diagnosed with Long COVID. They are all now out of range on my latest labs, and my IgG1 levels in particular were flagged as "significant and selective". I am freaking out about crossing the rubicon into an autoimmune disease for which there is no known cure (and for which the gold standard treatment - IVIG - is almost impossible to get approved for in the country where I live - not to mention that it is not a cure, and very poorly tolerated by many). The specialists seem content to wait until the situation gets worse, but I would like to be as proactive as possible in preventing that from happening. Can anyone provide any guidance as to how to take matters into my own hands?

Would you describe your breathing issues as such?

I was reading that not being able to fully yawn is a sign of your nervous system being unable to relax (which aligns with what we've learned about CFS type LC)

Maybe drugs that "forces" you into a relax state?

I feel like I do so many things right and still deal with this stuff it doesn't confuse me a bit bc people around me eat so bad and are entirely fine.

Does anyone else ever get the feeling when you are explaining your symptoms to someone who is unsupportive, that you are making up your symptoms? Like i know 100 percent my symptoms are real, but it is almost like I get this feeling that I am over exaggerating or lying, even when I am not. I try to be as accurate as possible when explaining my symptoms to doctors but I still get this feeling a lot of the time. If it is a doctor or person who is genuinely supportive I do not feel this way at all.

My worst period was from November 2023 to July 2025. Up until then, it was disastrous. My main symptoms were:
- Joint pain: (neck, shoulder blades, shoulders, legs)
- Pain or burning in the nerves
- Sensation of having bugs crawling all over my body.
- Weakness in those areas where I felt movement or bugs inside me! (perceived weakness because I went to the neurologist and there was no real lack of strength)
- Vertigo.
- Dry eyes
- Very intense fatigue
- Unlike many, I could sleep all day!
- Numbness and tingling throughout my body
- Very heavy limbs.

These are the ones I remember, although I ended up writing down 35 different symptoms!
Many have gone away. I've gone back to doing light exercise, walking, working, almost a normal life! Almost! But I still have weakness in some parts of my body, not all over! One day it's in my calves and arms, another day it's my shoulder blades and buttocks! And I also have something strange: when I touch certain parts of my body, I feel a kind of nervous reaction that causes a burning sensation and makes me feel weak! I have a trigger point in my right buttock, and if I press on it, it causes strange reactions in my foot. The weird thing is that if I press on my left buttock, my right foot reacts too! The same thing happens in my neck; if I massage my trapezius muscle, it contracts in my leg! It's crazy!

I know! Every doctor I've seen tells me there's no nerve pathway causing this! But it happens! It's like everything on my right side—from my neck, cervical spine, lumbar region, iliac crest, buttocks, thigh, knee, and foot—is irritated!

This bothers me constantly! There's no rest, and the weakness terrifies me because when this started, it was overwhelming! Has anyone else experienced this or recovered from something like this?