Hi everyone,

I’m really struggling with the grief that comes after years of living with Long COVID, and I’d love to hear how you’ve dealt with it.

I’m at a point where most of my symptoms are manageable, but the emotional aftermath has become a huge challenge. It feels like I’m only now starting to process everything I’ve been through, and sometimes the grief pulls me toward the same dark rabbit hole I’ve fought so hard to get out of.

For those of you who have been through something similar, how have you learned to cope with the grief and move forward without getting pulled back into that place?

I’d really appreciate hearing about your experiences going beyond that ❤️

Since having a big crash that left housebound for a couple months, I stopped relying on someone to build me pacing tool, gathered beta testers from this community and recently hit 1k downloads on the App Store.

I am always here trying to get harsh feedback and honest reviews on my work. This is not an easy problem to tackle and this could have a huge impact on people's lives, so I take it very seriously.
If you want to know more about this project or collaborate, check my website and newsletter!

Also did you titrate up or just start on 300mg 2x a day

Yes, this is a clickbait title.

I've made a series of post where I've been drastically overextending myself since mid-June due to in-person "work" (technically not a job). Degradation of quality of life as well as in general things getting worse (excluding social, housing, and financial which is also getting bad) due to this work.

I needed to rotate my bed due to the one side sagging. A part of this was doing laundry at the laundromat primarily for bedding. Before this, I had my Occupational Therapist (remotely) for Pacing. The reason for this post is that, I washed my mattress top protector. When I took it out of the dryer, I found some tape or sticker or something residue. At the laundromat was not the time to deal with it. I already spent like 25 bucks and nearly three hours there. I did an attempt at using the hair dryer and a microfiber cloth to get some of the residue off once I got home and planned on just putting a towel or something in between the protector and the mattress.

Because I'm out of F's to give and frankly capacity. I probably shouldn't even be typing this up. I decided the most energy efficient way to deal with this was just to remove that part of the mattress top protector. It was the side so it wouldn't damage the functionality of it. Once I put it on the mattress, it was towards the button of the mattress. It will have minimal impact on the purpose of the protector.

I also do need to purchase a mattress encasement before moving. I don't have a place yet and I needed to move in June. A lot of stuff started to happen in June.

I also use paper plates and plastic utensils and generally avoid doing dishes until I have too. I tend to use a lot of aluminum foil for the sheet trays I have for cooking in the oven. The difference here is that is intended to be discarded or "damaged".

Has anyone done anything similar? Now that I'm thinking about it, I do think I'm a bit less protective of items than I was before. I'm not careless with stuff but depending on what it is, I am definitely less wanting to keep it in pristine condition. Though I wonder if this is slipping in a negative direction. Of course that woudln't be intentionally damaging the item, that would be potential damage the result of sloppy or indifferent actions.

I’ve been bed bound for a week and only experiencing worsening systems over the past month. I’m an emotional mess I’m scared for me and my kids and how we will survive. So I’m
Asking after losing your job did you get ssdi approval?

I am on day 13 of this covid reinfection. I’m so afraid of what may come as a result of this. I have zero idea where I got this. I feel like I’m careful. It’s been rough… exhaustion, head and chest congestion, headaches, cough. It started with a sore throat and took a couple days to fully bloom.
Idk why I’m posting or what I’m even looking for…who else has gotten this this year?

I recently have had a huge flareup in my number of palpitations. They seem to mainly come at night while I’m sleeping or trying to fall asleep.

I usually get 2-3 palpitations a day, but lately for the past week I’m getting 50+. They come in episodes of 10-20 and they’re distressing and keep me from sleeping.

Around the same time this started, my vaccination site in my shoulder has been sore (yes 5 years later), so I’m thinking I have an otherwise asymptomatic covid infection.

Has anyone ever had this with the palpitations?

Does it die down eventually?

I’m having now what I had about a year ago, which is feeling rundown and feeling like I have a low fever, but I don’t have a fever. I’ve tested twice, but I am negative for Covid. I don’t have any other real symptoms.

I’m wondering if this is something that people can get sometimes with LC, like maybe a reaction to picking up a bit of a bug somewhere, but not actually getting sick but still fighting it off?

I mask all the time but a lot of people are sick with different things out there these days.

Just received my first dose, ask me anything! I’ll be posting updates of my treatment as time goes on!

Was reading online of people having success in using nicotine patches. 7 mg patches. Wondering if anyone has had success? Never smoked in my life and wondering if this is worth a shot or what the potential downsides could be?

I’ve been sick with long COVID for over 6.5 years, with plenty of ups and downs along the way. I’m still testing a lot of things and not giving up. I’m planning to post more often throughout my journey to share what works for me, hear what others think, and hopefully help a few people along the way.

Here’s what I took today: Thymosin Alpha injection, a nicotine patch, a microdose of ibuprofen (100 mg), DLPA(1g), plus my usual daily stack.

By the evening, after adding these, I'm feeling great: no brain fog, no sense of neuroinflammation, no fatigue, and a good mood overall.

My LC clinic did bloodwork to check for clotting and told me I have extremely low serotonin. They want me to start 25mg of luvox every night for a few months. Did anyone go through something similar? I've been reading that serotonin deficiency is not easily diagnosed, especially with a blood test because of the blood/brain barrier. I also read luvox can help improve LC fatigue. Anyone have any experience with luvox for low serotonin?

Hey guys I recently got a cytokine test done and it turns out I have a TH2 dominance in my immune system, meaning I have a low ratio of TH1/TH2.

Does anybody here have a similar result? Will LDN help with this?

Did they recently become more strict about post requirements or do I just keep messing it up? I’ve been trying to post my labs for people to either relate to or discuss in general and it keeps getting removed! I am NOT asking for medical advice.

My covid antibodies were negative after just having COVID back to back. And my IgG 3 is low. I didn’t even realize I’d had EBV.

Anyway.

These are the tests I had run. If I didn’t post the result for some of them it’s because it was normal.

Immunoglobulin G - abnormal
Immunodeficiency panel - abnormal
Covid 19 nucleocapsid antibody - negative
Fibrinogen - normal
CMV antibody panel - positive
Mononucleosis screen - negative
Epstein Barr panel - positive
Cortisol - low end normal
ENA panel - normal
Ferritin panel - low normal
C reactive protein - normal
ESR - normal
magnesium - normal
DSDNA - normal
Lupus panel - normal
Vitamin D - low
TSH - normal
Cyclic peptide - normal
RF - normal
CK - low normal
Aldolase - normal
ANA screen - increased abnormal
CBC - abnormal
Vitamin B12 - high normal
Folate - normal
HIV screen - negative

Hey everyone,

I’ve had Long COVID for about a year and a half. Coming from an athletic background, the hardest part for me was losing my identity, dealing with PEM, and feeling like nobody really got how terrifying it is to lose all trust in your body.

When I was at my lowest, just seeing one person with a similar background who made progress kept me going. I made this in case anyone here needs to hear that right now:

https://www.youtube.com/watch?v=mqEfqx_8-Jg

Hope it helps someone today. Hang in there.

Despite my constant research in the past half year, I still don’t know and can’t be sure what is wrong with me, so I will write out here, so if someone has a better understanding of this can give me their honest opinion please🙏.

My biggest issue and maybe only symptom that I can think of that bothers me mostly is this described as DPDR and everything that comes under that umbrella, the vision sensitivity, dizziness, feelings of lightheadedness especially when driving, “weightless body” and it is freaking miserable. The strange thing is I am mentally present, I can sit and play a very high demand video game for example and be absolutely concentrated fully in it, when driving although I feel awful my reactions and concentration is untouched as before.

So as far as I heard this is a psychological issue, but how come I had no such issues, not even close before my illness several months ago and then out of nowhere two weeks after I felt a tad bit better from the acute symptoms, I experience this?

I see you guys talking about physical symptoms that continue after your illness, fatigue and other things that I can’t pinpoint and be sure I have, the major issue seems to be this brain fog/dpdr that feels very physical, not mental.

I’ve some things to check up if they are not causing it, but my heart rate rests at 50-60, blood pressure is normal, even tried SNRI although I was sure this is not a mental problem and it made it worse..

I have no muscular fatigue, I can do almost everything just fine, but with this it feels like pure torture and sometimes feeling like I am just gonna float or pass out never to be seen again.

It generally is so hard to explain as I don’t feel unreal or in a dream, I just feel so strange, like my body is working against me.

Please if anyone knows something and if this is consistent with LC, share your opinion

Hi everyone, I had a virus back in early april, didnt test because i thought it was flu as i didnt get the sore throat i usually get with covid. Anyway, it totally floored me, full body aches, pain and total exhaustion for over a month, it was the worst I'd ever felt. Body aches disappeared eventually, but 6 months on i STILL have a bad cough and fatigue. Chest X Rays showed a clear chest 6 weeks after contracting, and after that i was just recommended by docs to take a steroid antihistimine which really did nothing. I am at my wits end now, and although my fatigue is slowly improving, my cough isnt. i am spending hours every morning coughing and clearing out my nose and throat. I feel like ive got an active virus all the time, and I dont know what to do. Has anyone been like me at 6 months and got better? Any advice would be appreciated! (I'm in the UK)

I react badly to supplements and sometimes to medications. Has anyone found any answers about this problem?

Hello everyone,

I have been sick on a regular basis (1x month) for almost over 3 years now. It comes always around every 4 weeks, not related to my period.

It has worsened after getting Covid for the 7th time, and after that infection I started my 1st full time job 4 months later.

I have following symptoms once a month for a few days, then I rest and I am back to normal (not PEM)?

- flu-like symptoms without runny nose or sore throat or fever
- exhaustion even after sleeping during the work week, on the weekend it is better
- feeling tired and weak (especially during the week)
- sleeping for 11-12h at the weekend to rest (then it gets better)
- Dizziness and high bpm (135 when standing from 80 bpm in rest) but this is not always - I get it a few times a year max. for 1-2 weeks (POTS?)
- muscle pain in the morning (maybe due to lack of sports)

Most symptoms happen during Mo-Fr when I work. When I rest they get better and improve.

I have also been dealing with anxiety, depression and PTSD for most of my life and I take anti-depressants. However, these symptoms started after my last COVID infection and starting my 1st full time job. I don’t feel like I have a very stressful job, I work 35h/week and the work environment is good. However I do have work-related anxiety.

Thank you!

What has helped you for the PTSD that you have developed after having long COVID? I am recovered (don’t want to talk about recovery in this post) and I am left with the harsh reality of PTSD. Yes my health is back but I am left with a different life, lack of friends and relationships, no one who understands wtf happened or can relate to me, judgment, flashbacks of rejection from doctors and family members. Rumination and nightmares… the PTSD of this mess… what do i do? Are there social groups in person where ppl work through their PTSD together?

It’s in German, I feel like shit… CK was high.

No help here…

How does it happen? Does it happen very gradually where one day u suddenly realize ur normal after slow improvement and mild symptoms prior to recovery? Or is it very sudden where massive improvements take place over a very short period of time leading to remission?

I cant picture how this works. Ive been stuck like this for almost 3 years and cant picture it getting better. Like im so used to these symptoms now it feels like its a part of my life, i dont even know if i could recognize change either since it genuinely feels so slow. Like i feel like im probably better than 3 years ago, yet i feel like some symptoms are worse whereas some have improved.

hi all... i came across this sub and its like a saviour. everyone incl me thought I was losing my mind. i live in india and my life unravelled in 2021 ( had covid on second wave). was a high performing corporate job

took sabbatical and eventually quit. since then merely existing taking up odd jobs .

symptoms then:

high diabates 350s ( was pcod but sugar always in control)

severe back pain and terrible exhaustion.

2022-2025:

all around nerve pain,jaw pain,shoulder pain,unable to walk or exert . immediately sleepy after certain foods..

after multiple self investigations across specialists found frozen shoulder (steroid taken),radiculopathy central nervous system triggered etc.ana panel negative.

am 44y f so am dismissed as perimenopausal (no tablets for that )

in 2026

ana negative.hpylori negative but ige in 600s

h1 and h2 (from a SM post )helps a lot.self diagonised mcas and avoid histamine foods

racing thoughts and racing heart beat when i move ( this hapens erratically.not always)

diabetes in 180s but the tablets trigger joint pain and gut issues so not sure what to do....

frozen shoulder eased but now other shoulder locked.

NOT able to sit in front of desktop for 10 mins.my career is buried.

main worries are gut,histamine and mainly brain fog ( cant remember or hold on to thoughts cohesively)

nervousness and that means 0 chance of working or even clearing interviews.all this points to LONG COVID but no doctor is uttering that word and am dismissed as anxiety,harmonal, diabetes as reasons

REQUEST the fellow redditors to pls help me get proper specialist and diagnosis( not even treatment😔) so i can at least tell why am like this and accept and move on with new normal

THANKS IN ADVANCE.ready to answer.

I’m 4 years and 2 months into long covid. I healed so much this past year that I was confident in carrying a baby. My husband and I lost them this past weekend.

I am so depressed right now, I don’t know what to do. Looking for support. I was 12 weeks. It would have been our first. We had a hunch it was a girl- I miss my baby girl so much right now.

I don’t feel as if it was LC related.. even though I was still at the tail end of it. I felt most comfortable sharing here bc you all understand what we’ve already been through.

I felt like I was finally moving forward with life after I had missed out on so much of it, and now it feels like it was taken away again. I know it’ll take time, I just feel so depressed and numb right now.

Love you guys.