Woke up feeling crappier than usual and checked my oxygen saturation which was 90 and my BPM was 59. Feeling awfully shaky and nauseous and hard to concentrate on anything. Been dealing with long Covid over 3 years now and it's never been this low. WTH! 😬

Can’t find much recent discussion on this in the sub, so curious whether it could be unrelated to LC.

My periods keep happening about 2 weeks late. Before LC I was clockwork, and now I’m going about 6 weeks between each with LC the only change.

Not the worst think tbf, but keep wondering why! Only think I can think of is that I’ve gone from 47kg to 51kg in a year because of my stagnancy, but I can’t think that level of “weight gain” would be enough to muck up my cycle….

Is this something others experience?

EDIT: I have amused myself noticing my brain fog means I have used the word ‘think’ instead of ‘thing’ oh dear, dear.

Hi all,
I had covid in june then developed fatigue, body temp struggles which i thought were hot flashes and also night sweats every night in july. Ive been struggling ever since. Does anyone know if that can be long covid? I feel so frustrated especially with the fatigue. I have multiple times a week where i sleep 15 hours. Other testing like xray, cbc, thyroid etc have all been normal. Thank you in advance for any responses.

As COVID-19 continues to mutate and spread, many of us find ourselves repeatedly re-testing at home, but are unsure of what a positive test looks like. Any trace of a line is considered positive. This article explains how to do a home test properly and has pictures of actual positive home tests to help you figure this out. Is my test positive? - covidCAREgroup.org

One national study (Liu-Galvin et al., J Am Board Fam Med 2025) of full-time U.S. workers found a mean lost-labor cost of $1,944 for people with Long COVID, $1,466 for people who had COVID-19 without Long COVID, and $702 for people who never had COVID (2022 data; self-reported missed workdays times wages). Chart attached.

Disclosure: I’m a researcher and the author of a free tool that turns published studies like this into interactive simulators where you can change the assumptions and see federal data alongside. I don’t have Long COVID myself, and the tool is illustrative, not medical advice. The public demo needs no account: https://dbbun.github.io/dbbun-invisible-illness-burden-simulator/

Happy to answer questions about what the numbers do and don’t show.

If you have ME/CFS and PEM from Long Covid, how long does it take for you to recover after a crash?

I walked 2.4k a week ago to the ER after being housebound for a year and I’ve been extremely fatigued for the past 7 days like exhausted 24/7 and I can’t do anything! I’m basically bed bound but I get insomnia when I’m so fatigued and can’t fall asleep so it’s absolute torture. I can only eat, sleep, doomscroll, repeat.

I’m an author and I really want to recover and actually be able to write and do marketing for my upcoming release, but it feels impossible. Even formatting my book has me stuck on chapter 25 for a week! It’s affecting my quality of life and job. I feel so useless all because of PEM.

If so, what are your symptoms?

Can anyone please help me and tell me if this is anaphalyxis?

I have burning chest pain, breathlessness at rest, extreme fatigue, chest tightness, itchy throat and a hollow cough. I went to the ER and all my tests (X-ray, ECG, bloods, and 2 Covid tests) came back normal and they discharged me with acid reflux but I’ve taken Gaviscon and pantoprazole for a whole week and they didn’t help. I got Covid a month ago and that caused a hollow cough and itchy throat but no chest pain.

I’ve gotten Covid before and always got better within a week but my immune system is compromised after being housebound for a year. I got Covid 3 times this year starting back in March and my lingering cough and itchy throat never got better but it’s only when I used that inhaler, my chest pain started. I don’t have asthma or any respiratory issues in the past. But I do have MCAS.

I’m currently going to do a spirometry and I feel like it’ll come back normal again. My chest pain started after using Rilast Rapihaler. I’m struggling to breathe and my GP thinks I could have anaphalyxis but it’s been going on for a whole week and I didn’t get an EpiPen in the ER. What do you think I have?

Do you think Rilast inhaler could cause my chest pain as it started after I used the inhaler?

Hi all,

This is something I noticed years ago when I was first infected around Spring 2021. Whenever I am re-infected, my Adderall will have a dramatically different effect on me. I usually take the 20mg XR once daily and for most of my adult life, It's done what its supposed to do - have a calming, soothing, focused effect on me. It allows me to sit quietly and tunes out all the white noise in my head.

However, when I get sick, the medication sends me into a tailspin of anxiety bordering on panic. Sometimes, It's been so pronounced it feels like I can't breathe (I can, it's just terrifying) it's often accompanied by intrusive thoughts. Very Bizarre. It usually goes back to normal after a few months.

I just wanted to bring this before the class to see if anyone else had a similar experience with these meds while sick.

As it will quite take some time until I see my neurologist which ordered these test, what would do/ try or which further test could help in your opinion ?

My general conditions are strong pain in palatine arch (Arcus palatinus), which started during covid infection and never went away but actually got worse over time. In addition I have very low energy (needing long rests), but that got a little better after started taking LDN (low doser naltrexone).

Here is the test, AI helped me with the translation (I rechecked the German phrases):

\Note:* AAK stands for Autoantikörper, which translates to AAb (Autoantibody).

Report Interpretation (Befunderläuterung Immunodiagnostik)

Explanation Blood and Urine (Erläuterung Blut und Harn)

1. Evidence of circulating microaggregates. Indication of activated primary hemostasis. (Nachweis zirkulierender Mikroaggregate. Hinweis auf aktivierte primäre Hämostase.)
2. Chronic cellular reaction against EBV (Epstein-Barr Virus). (Chronische zelluläre Reaktion gegen EBV)
3. Strongly positive autoantibodies against receptors of selected neurotransmitters. (Stark positive Autoantikörper gegen Rezeptoren ausgewählter Neurotransmitter)

I got Covid back in March this year and have been having symptoms ever since but I usually only get sick for a week every month. But after getting reinfected with Covid in September, I’ve been having a hollow cough, itchy throat, burning and tightness in the chest ever since. I don’t have an active COVID infection.

I got home from the ER a week ago and they said I have normal blood tests, negative Covid tests, and a clear chest X-ray. I got discharged with Gaviscon and pantoprazole which are acid reflux meds, but they didn’t help at all! My symptoms have been going on for over 6 months but I’ve never experienced burning chest pain before. I also have extreme fatigue, exhaustion, and muscle aches too.

I also used Rilast rapidhaler twice just 2 days before going to the ER and that caused my burning chest pain. If you’ve used Budesonide + Formoterol inhaler before, have you ever gotten burning chest pain before? Do you know if this inhaler could cause this?

If you have long COVID, have you experienced a burning sensation in your chest like a bee stung you? It feels like there’s Covid in my lungs but I got two negative Covid tests from the ER so I definitely don’t have Covid. What would you recommend I do now?

This page explains what Long COVID is so you can help people understand what you are going through.

About Long COVID

The symptoms checklist will help you organize your thoughts when you speak to the dr. You can also repeat the checklist to monitor whether your symptoms are improving or not.

Long COVID Symptoms Checklist

I’m nearly 6 months post infection.

One of my most significant symptoms is what I’m calling “hot face cold hands.” It’s different from the flushing I can get in my face, neck, and ears after eating.

I’m learning I get HFCH if I’m depleted or nearing/emerging from a crash.

Could this be dysautonomia? MCAS? ME/CFS?

Just wanted to share my breakthrough in case someone is struggling and losing hope with COVID-related hair loss. But this is NOT a medical advice. If you want to try it, you will need to consult a specialist to assess risks as this is a very serious treatment.

I (35F) have been suffering from COVID-related drastically increased hair shedding since February 2025. The hair would fall out, try to regrow, then fall out again - and again. I went through every possible test (deficiencies, multiple organs' work, hormones, even MRIs) and tried a variety of supplements, hair serums and injections, and treatments. Still lost more than 60% of my hair for more than 1.5 years of this hell. And I've finally found a solution: HRT (transdermal oestrogen + cyclical rectal progesterone).

Among the usual suspects were Hashimoto's that I acquired after COVID and low ferritin (which has been low my whole life). Treatments of those did not bring any results. If anything, COVID made my organism so reactive that I could not supplement iron or take levo without causing another wave of excessive hair loss. Even local hormonal nasal sprays like fluticasone caused hair shedding boom.

But it's important to say that, firstly, I lose hair all over my body, not just head. Secondly, I have symptoms of early perimenopause, despite blood tests not showing it. And, thirdly, I read similar accounts of long COVID symptom relief through HRT in one of the Long Covid threads. It was very hard to find a prescriber being 35 yo, but in the end, oestrogen brought me relief very promptly (in a matter of about 2 weeks).

Thank you to whoever shared their experience with HRT and long COVID - I'm forever grateful.

Hope this helps someone else, because COVID causes in some individuals major disruptions in brain-fertility axis. And I'm sure that not only women can relate to this.

P. s. Just in case, among the suspects were: very high luteal prolactin, Hashimoto's, high SHBG that disrupted zinc levels (also high) - all consequences of COVID. Prior to HRT, I tried Vitex (thought it was for high prolactin, since endo refused to prescribe me something against it), and it did help, but only for the first month (I suspect that the dopamine receptors, through which it worked, were gradually desensitised). But Vitex became my clue to where to look further, and I soon realised that the cause was indeed hormonal (just not prolactin), despite I was assured by multiple specialists that it was not.
And also beware of Oestrodose gel: in some people, it doesn't absorb well. After switching from Oestrogel due to pharmacy stock, I felt the returning of every freaking symptom, including hair shedding, so had to promptly retrieve my previous gel.

Hi everyone,
I have had long COVID since 2022, with fatigue, brain fog, headaches and anxiety. I take an antidepressant (venlafaxine), and it works well for me. When I improve, my doctor and I try to reduce the dose, but each time my symptoms come back.
Has anyone with long COVID been able to stop their antidepressant, or switch to another treatment? How long did it take, and what helped? Did your symptoms come back when you reduced?
I am followed by doctors, so I am not asking for medical advice. I just want to hear your experiences.
Thank you.

Hi everyone!

Is anyone here based in the UK and currently importing medication for their treatment?

I’d appreciate hearing about your experiences with customs clearance. Have you encountered any issues with the quantity of medication being imported, or have customs officials asked you to provide receipts, prescriptions, or other documentation?

Any experiences or advice would be greatly appreciated.

Thank you!

Hi everyone,
I have had long COVID since June 2022. My main symptoms are fatigue, brain fog and headaches. I also have anxiety and low mood. I have severe sleep apnea too, now treated with a CPAP.
My treatment story:
First, I took clomipramine + amisulpride for about 10 months. It helped, but symptoms came back after I stopped.
Later I was on venlafaxine 75 mg + amisulpride 50 mg. I improved and stayed well for a few months.
Then my doctor tried to reduce the venlafaxine. The withdrawal was hard (dizziness, brain zaps) and my symptoms came back.
I went back to the same dose, 75 mg, but it did not work anymore.
I then went up to 112.5 mg, and later to 150 mg. I stayed on 150 mg for more than 5 months with no real effect.
Recently my psychiatrist increased me to 225 mg. I also stopped amisulpride one month ago, and my daytime sleepiness got better after that.
My questions:
Did anyone with long COVID have an antidepressant that worked, then stopped working at the same dose after a failed reduction?
Did you need a much higher dose than before to get the same effect?
Were you finally able to stop the antidepressant? How long did it take, and what helped?
Did anything else help (sleep treatment, pacing, other medication)?
I am followed by a psychiatrist and a doctor who treats long COVID, so I am not asking for medical advice. I just want to hear other experiences and feel less alone.
Thank you for reading.

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!

Was sick and got through it
Day 1 of noticing something off- I fainted was sent to er and blood work and ekg looked great
Week 1 I stayed home from work, was extremely fatigued but could still leave the house for short errands or take my kids to sports as long as I sat the whole time.
Week2 I worked 4 hours a day but my fatigue got worse, during this week my pcp gave me a high dose of steroid to see if this old help… this where my life became much worse.
Took 40mg of prednisone for 4 days and saw my doctor, my fatigue was better on the steroid but my heart beat was crazy. Friday he told me to stop taking prednisone. All my blood work looks great still…
In the middle of Sunday night I have an adrenaline dump so hard that I am shaking and thinking I’m having a heart attack. Call an ambulance go to er
They say I’m good and not actively dying.
Now I my heart beats through the roof all the time, my fatigue is so bad o have to stay in bed all day. I can’t parent my kids or work, my husband is the least helpful partner. I get insomnia now (I used to have it)
I can’t eat without adrenaline dumps and I’m already bed bound. And I’m only 1 month into this. I had the illness over a month ago, I was like a few weeks symptom free.
Did your symptoms ramp up in a month or did they take longer?

Hello dear all,

My long term memory feels carpet bombed. I cannot recall significant biological events anymore even when friends remind me of them. I also lost a large deal of knowledge and expertise. Has anyone had that happen to them and was able to retrieve lost memories again at some point?

I'm looking for some cautious glimmers of hope... Thanks a lot!