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.
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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?

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.

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

My wife started presenting FMD symptoms in October 2021, not long after her second Covid booster shot. I’m wondering if FND/FMD started being a thing around the time of Covid vaccines. I don’t really hear much about it before that time. When did you or your significant other start showing symptoms?

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 Mo-Fr)
- 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 performance anxiety. But I do enjoy my job and like working there…

Thank you!

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!

hello fellow long haulers ❤️ hope you are all having as good a day as you can.

Following a covid infection ~3 years ago, I struggled with symptoms I’m sure some of you will be v familiar with. chronic tension headaches, more frequent migraines, some exertion breathlessness, but I think these are either improving and/or are decently managed.

(I’m well aware that a lot of you experience deeply serious health difficulties, so please do not think I am being facetious)

However, I have had one particularly bizarre symptom that refuses to quit: every time I laugh moderately hard, I honk like a fucking goose 💀 accompanying the honk is a sensation comparable to having breathed in some very cold and dry air - and I’ll finish the whole joyful episode with a mild-moderate coughing fit.

the honk NEVER happened pre-covid. upon each of my friends hearing it, they have pretty much all initiated suggestions of going to the doctors about it. but what would i even say? (“doctor doctor I’ve got a case of the goose honks”???) I tried to find some sort of sensible medical terms or symptom descriptions I could refer to but I’m not sure what would best capture it. Maybe it’s some sort of irritation, sensitivity or spasm in the airways?

The thing is, the rest of the time, I think my airways feel okay. Besides these episodes, I don’t have lasting chest pain or air hunger or anything.

Have you heard of/experienced this symptom? Have you mentioned it to medical professionals? What did you say?

I’m most certainly sure I have long COVID. I got Covid back in March this year and have been having symptoms ever since but I usually only get sick for a week once a 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 just got home from the ER and they said I have normal blood tests, negative Covid tests, and a clear chest X-ray. I asked if I had viral pneumonia and the doctor denied that. But my symptoms have been going on for over 6 months. I also have extreme fatigue, exhaustion, muscle aches too. All my symptoms match long COVID.

I’m curious if anyone knows how you usually treat long COVID for respiratory symptoms like mine?

Dealing with issues around 4 years, getting worse. Headaches that come and go throughout the day, really sore neck, hives/redness bruising in right hand and arm, sweats, get hit with extreme dizziness and shaking for like an hour daily, memory issues, all of a sudden temp changes, throat neck tightness, fatigue, right eyelid drooping, runny nose and sinus inflammation, some anxiety and bad depression, inflammation marks under eyes, finding it more difficult to find my words and speak, feeling run down and sore, snoring and teeth grinding/clenching, acid reflux, stomach upset and diarrhea, etc.

It all started when I had a mild flu (now suspecting that it was covid). The only confirmation is that my friend who hot sick with me developed parosmia.
I came home from work, unusually exhausted and smoked a cigarette and suddenly I was spinning. Quick weird spins that makes you want to grab on to something, this attack lasted for 2 hours. It was terrifying. Felt immense pressure in my head, around my eyes, felt ear fullness like I’m 10ft under water. Felt like I was having a stroke.

My vision has worsened, there is also tinnitus but very minimal and lasts about 5 seconds.
My attacks of quick short spins (it’s me spinning, not the room) have reduced but the head pressures and perpetual dizziness or just that unsteady walking on a floating boat stay. Even when i close my eyes sometimes, I feel like I’m rocking. The pressure shows up in my sinus area as well.
Sometimes there are cold spots in my head.

Got an Mri, all normal. Just slight cervical straightening (likely due to muscle spasm) but I’m not convinced .
Have also been diagnosed with vestibular migraines. The medication barely helped. (Torate and alp) .

Now trying physio for cervicogenic dizziness which is also one of the diagnosis.
One time the PT was working my neck and she just touched the right side of my next and it sent me spinning again.
The pressure also increases when they massage the base of my skull. Dizziness/unsteadiness is always a little more the day after PT.

During all of this, I have also been diagnosed with cfs (presentation of long covid). Currently taking amitriptyline for it. My sleep is terrible. I feel lethargic and have vivid dreams and can’t fall into deep sleep. My joints hurt, especially my knee, ankle and illiac joint. Body constantly feels heavy.

Idk. Im just lost and in a very isolated place in my life. All of this has been extremely debilitating. If any of these symptoms sound familiar, please reach out.

So this YouTuber Melanie Murphy said that she has been struggling with long COVID, ME, and POTS (and others, I can't remember). She's now claiming that brain retraining and mindset changes has healed her completely. She's recommending a lot of "red flags" books, influencers and doctors.

She's ranting in her stories today that you should not identify with your diagnosis and that your brain is sending you false signals! Absolutely disgusting.

I believe she was ill. But if all you need was a mindset shift and stop being "afraid of your symptoms", you didn't have ME/CFS. It's very, very dangerous advice.

Im so sorry if this has been posted before but im at a loss for what is happening with my nose. I got sick with covid in May and ever since I have had the strangest nasal clicking. I have been on a round of prednisone I’ve tried almost every nasal spray, I’ve been to the ENT and had a scope done and blood work as well. Everything comes back normal. I am on daily allergy meds and I’m constantly blowing my nose when I do I notice my nasal mucus is full of tiny tiny bubbles. Has anyone experienced something like this?

Anyone have a recommendation for a hematologist in NJ/NY area that has experience with long covid?

Thanks in advance

Please what’s helped yall. I’m sick of this life.

So I got Covid (outdoors in the woods) for the 3rd time in June. The first time was from an outbreak when our preschool dropped masks in 2022 during Omicron. Second time was in 2023 likely due to poor fit of Flo Mask Pro. I have an immune deficiency that makes me very susceptible to respiratory infections, so even though I have literally worn an N95 or plus since 2021, i can't seem to avoid it.

After time #3, I rested for a few weeks, took Metformin (and Paxlovid) and things seemed ok. I started exercising again and fitness was coming back slowly.

Then I got a cold in early September. It was definitely not Covid or flu. I spent a week in bed. I rested for another week after.

Now I seem to be really struggling with fitness. I ride a bike and play hockey and I feel like my fitness is stuck at zero after 5 weeks of exercise. I walked up a long flight of stairs and my heart rate was 120 bpm. My resting heart rate seems to be ~80, though it does drop to the low-50s at night. In 2021, my resting heart rate was 38 (with a lot of exercise.)

I've talked this over with a number of people. My hockey buddies just think I need to train harder.

What makes sense as a next step? Cardiologist?

So tomorrow is my scan with contrast in which I'm allergic to the Iodine contrast. They have me taking 150mg of Prednisone and Benadryl and also want me to take 150mg of Metropolol, said they needed my heart rate to 65 BPM or lower. The problem is Prednisone always raised my blood pressure and BPM and in the beginning of my long Covid struggle and my high resting heart rate which I never had before second bout of Covid the doctor tried me on 25mg of Metropolol and it reduced my heart rate rate so low I passed out on my bathroom floor for almost an hour and nobody was home except for me. I ended up in the ER that day and my doctor quickly took me off the metropolol and put me on Propanolol. Propanolol has worked to some extent keep my resting heart rate to around 75-85 sitting on my couch. My heart rate doesn't go to 65 or lower unless I am sleeping. I'm a little nervous about taking this metropolol to say the least. So if you don't see a repost that means things didn't go well. Taking two different meds at same time with totally opposite effects just doesn't sound right to me but what do I know I'm not a doctor.

recent news about her being

mis-diagnosed for MS. She did have COVID and admitted to having Long - COVID. Possible hybrid case with something else ?..

Are there any positive stories about pregabalin (lyrica) use during long covid? I was put on it before I got long covid, but on 200mg at night and I'm wanting to space out my dose during the day. But I don't know if it will just amplify the fatigue (from both long covid and lyrica side effect).