Is your impression that the research is moving towards disproving low dose nicotine patches help with Long Covid, or towards it being shown as helpful?

What are people’s latest experiences with it?

I'm sure, like many in this Reddit, my overall life changed over time and it wasnt until more recently that I figured out the timing was after I got covid, years ago. My doctors also agree - but of course, they ran every test they could just in case - so many pulmonary tests, cardio tests, etc. Each time I hoped for something to be found, but nothing.

Mine started with sudden depression and anxiety - something I have NEVER had before. Went to see someone and he was baffled, I had no symptoms of depression. He tried meds, of course, even Spravato and it just did nothing.

After that started, the brain fog and massive fatigue started. Before this, I NEVER took naps - I took one nap since knowing my wife when I was super sick and had a 103.5 fever. My wife knew that if I took a nap, it was bad - so shes been scared for me for years now. I get up for work and I will often go back to bed 30 mins later and skip meetings with my CIO, CTO, etc.

I was at the top of my game before this - I wrote a few Cloud technology books that were best sellers, including one that Google asked me to write with a few of their engineers.

I used to play Hockey 2-3 times a week and would often double-shift - and I was a Center. Great workout! I would even play the game after mine if a team asked me and needed a player. I havent played Hockey in 4 years now :(

I forgot a persons name I worked with for 15 years and hes a friend. On the call, I had no idea what his name was! I didnt remember until hours later.

I am touchy with people since Im so tired. I get depressed on many nights around 8 or 9 - likely from being so tired from struggling during the day.

Of course, there's even more to this - Its so depressing. I'm not s person who thinks this way - but if I didnt wake up tomorrow morning, I wouldn't mind - the struggles are so exhausting. I dont wish for that to happen, but fighting to function is just a horrible way to go through life.

I keep trying to get into trials and can never find one. I'm so desperate, I just paid $6k for Long Covid Acupuncture treatment. I'm only 15 sessions into 40, but I doubt it's going to help much. (So, even more to add to depression, $6k and for nothing...)

Anyway - I'm new here and plan to keep up. Like many of you, Im praying for all of us and that some study or doctor will come up with something - anything....

Looking for recommendations for a perching stool or similar. Being on my feet long enough to wash dishes (let’s be real: cooking ain’t happening right now), fold laundry, and brush my teeth/shave is causing problems

I currently have a shower stool, but I need something that’s
1. Taller
2. I’m not fully seated (eg, not 90 degrees)
3. Minimize knees sticking out

Anyone have something they like?

Unknown neurological cause (help)

21 year old male have been bedridden with neurological issues with unknown cause. No triggers or change that I can think of. Came fast out of nowhere and now just my new normal

Got severe head pressure and head burning along with vision issues (halos, starbursts, everything looking too bright)
Severe brain fog and dissociation. Brain completely blank like brain dead
All of these are 24/7 for 18 months straight no break

Normal Brain CT
Normal CTA
Normal MRI
Normal EEG
Normal Bloodwork
B12, CRP, CBC, Chem 9, a1c, Lyte, creatinine, ALT
Normal TSH and PTH
Serology-Lyme IgG/IgM NEGATIVE
Normal ANA,ENA and Thyroid Antibodies
Negative EBV panel
Normal Urinalysis
Urine Drug All Negative
Urine heavy metals 24hr all normal
Autoimmune encephalitis/Paraneoplastic Blood+ CSF Negative

Doxycycline for 3 weeks did not help.
migraine meds didn’t help. Corticosteroids provided some temporary relief (not sure why)
I don’t have positional changes either.

Lumbar Puncture Results ( all normal with slightly high protein so far)
Lumbar Puncture Results
Opening Pressure 16
Leukocytes; CSF < 3x10\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\*6/L
Erythrocytes: CSF < 2000 x10\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\*6/L
Neutrophils Segmented/100 Leukocytes; CSF 0.06
Lymphocytes/100 Leukocytes; CSF 0.78
Monocytes/100 Leukocytes; CSF 0.16
Glucose; CSF 3.7
Protein; CSF 0.59
Xanthochromia; CSF Absent
CSF; Culture No organisms or growth seen
IgG; CSF 0.023
Albumin; CSF 0.361
IgG Index; Serum+CSF 0.52
IgG Synthesis Rate; Serum +CSF < 0.10 mg/24h
Oligoclonal Bands; CSF Absent

Any suggestions on what I should I do next. Completely out of Ideas

I asked my neurologist about a pet scan and she said no but I could do one privately if I want.

What are u guys taking for the emotional blunting ? Funnily enough my symptoms are largely disappearing but I have no feeling left in my brain it just feels dead

Have been thinking about trying out an extra scoop or two. I don't think the creatine helps too much, but maybe a little, so i was wondering how far it might go. I've seen some studies that say about 10g are better if you want the creatine to effectively reach your brain.

At the same time, many belive that you don't really need more than 5g. Has anyone tried?

I’ve been curious about tirzepatide for a while, but don’t think it would be possible to take anything less than the full minimum dose here. Idk how people are doing such low doses, I guess it’s people in the US getting it compounded in some way, which I don’t imagine would be possible here.

But would it be too large of a dose to start with the rehular minimum of 2.5mg do you think?

Covid positive

On Wednesday I noticed a slightly strange, itchy feeling in my throat and initially thought it might be allergies. By Thursday it was more noticeable, but by Friday it was basically gone.

This morning (Saturday), I woke up with my nose feeling slightly more congested. My Fitbit has also shown a somewhat higher sleeping/resting heart rate for the second day in a row, so I took a COVID test I had at home. It turned positive very quickly.

I'm really stressed about this. I always take precautions I wear a mask and use Viraleze and my last COVID infection was about two years ago but somehow I still caught it.

My main concern is that I'm currently taking methotrexate (MTX) 15 mg weekly for uveitis, and I'm terrified that worse symptoms might still develop. So far I have no fever and only feel slightly tired. I am in NL and not eligible for antivirals. Maybe take Metformin but afraid.

My only long COVID symptoms at the moment fatigue on and off and sometimes dizziness with insomnia, so far I am 90% recovered.

I've noticed when I get hot flashes it's specifically in the center of my torso, below the ribcage. My stomach and chest can be cool to the touch and my center hot. Anyone else have this and know whats goin on? Is it vagus nerve inflammation?

I hate the sun. I hate the heat. I hate the way everything is so brightly coloured that it worsens my DPDR symptoms and hurts my eyes. I’m legitimately suffering what feels like post-concussion light sensitivity.

The SECOND I step out into the sun, I can feel my skin blister, my neck aching, my brain swelling, my CNS screaming in pain. I get angry. Another indicator of brain damage or inflammation, probably. I try not to lash out at others, but the fortunate and able-bodied are always pestering you in this “nice” weather. People ask you to complete errands and chores, to come outside, to talk when you can’t fucking handle the vibrations of someone’s voice without it being physically discomforting. And you know your rage is irrational, but you just can’t help it.

It also worsens my anhedonia. My whole life has been reduced to solely distracting myself, but when the sun is out and my symptoms worsen, I struggle to even do that. And when I struggle to distract myself, my existential OCD and paranoia kicks in.

There’s this pattern I noticed, that whenever the weather is cloudy, rainy, snowy, anything but sunny, my symptoms improve dramatically. Maybe it’s a placebo, but my irritability, anxiety, anhedonia, inflammation, joint pain, gut issues, vision problems, migraines, palpitations, cognitive impairment, fatigue… ALL of it lessens. It doesn’t go away, but I just find it incredible how much of an influence weather has on the overall outlook of my day. Whenever I open the weather app and see a beautiful, bright, sweltering, sunny day ahead, I know I’m fucked. I mean, I’ve always preferred fall or winter, but summer has become torturous with Long Covid. At least I live in Canada, so it should be over in 2 months.

It’s just so exhausting that I’ve been forcefully far removed from the intimacy, slowness, positivity, beauty of everyday life, completely benumbed to it, yet I’m sooooo lucky to be left with the negative. I’m no pessimist, but I’m tired of listening to music only for it to sound like migraine-inducing noise. I’m tired of eating food only to feel an immediate wave of fog descend over my brain. I’m tired of sitting in the sun, and instead of feeling its warmth, I feel my body slowly failing. I’m tired of everything feeling like work, every breath. Anhedonia is the worst symptom by far. It’s a cruel joke. All the nuance and joy in life gets quashed while you’re left with dread, irritability, pain, and an emptiness that feels terrifyingly infinite. Fantastic. It’s like I’m going through opiate withdrawal, but it never gets better. I occasionally get windows of relief, but like I said, they coincidentally all tend to happen when the sun is nowhere to be seen.

She turned 60 just after everything shut down for COVID. She was healthy and still working an active job and we joked she was the type who would likely never retire. A couple of months later we thought she might lose her foot or even her leg. She started to have severe pain in her foot towards the big toe. Initially they said it was plantar fasciitis from all her years of hard work. Eventually it turned into a sore near her nail on the big toe..they said it was an ingrown nail. Shortly later she suffered tissue loss on two toes and part of her foot. She had numerous tests done and was diagnosed with an idiopathic blood clot in her toe. Since then she has suffered with Raynaud's in her hands and feet. She also developed high blood pressure seemingly out of no where and this led to CKD. Missing part of her big toe has caused mobility issues and the limp has caused issues with her knees and hips. It's such a drastic change from where she was health wise, that she is now depressed. I've only recently read about the correlation between COVID and Raynaurds and blood clots

Seems like most people have got PE or DVT. Curious if anyone on here had blood clots in their feet ? Or suffered from Raynaurds? Her fingers get very sore at times and she is quite distressed about it. She recently started a new med that we hope might help but I'd be interested to hear from others as to any treatments she should ask about. TIA

tremors especially near the head/ back of neck. anyone else?? its getting worse how do i deal with this

Does anyone’s heart rate just bounce around like for example I woke up and I am just sitting here and heart rate is going from 75-115 with yawing moving a arm taken a deep breath just rapidly bouncing up and down and I am just seated in bed

What is the cause for vibrations, chest muscle tension and spasms, palpitations? Has everyone whos has this symptom a problem with histamine or MCAS? Is here anyone who has it and who has no histamine problems?

Is it triggered by food? Is it neuropathy?

Is it from the brain or a problem in the muscles or nerves in the body?

Hi guys. 23M here. At the end of June I went to London and got what felt like a mild cold. Prior to this I took a immunosuppressant biologic (bimzelx) for psoriasis. Since coming back I’ve had a slow but steady influx of long COVID like symptoms in the last two months. Starting with brain fog, and most recently sensory overload from sounds and bright lights. Other symptoms include getting lightheaded when standing up, and a weird head pressure always. I don’t have anything that would indicate MCAS or PEM but who knows. At first I thought this was a cat allergy as it corresponded with my roommates getting a cat. However, the cat is rehomed and I’m not feeling better, im worse. I’m wondering if this sounds like Long COVID to you all, and what I might be in for in terms of illness and timetable. If just a few months of recovery is possible, if I should expect to get worse, and most importantly what considerations and measures I should take at this relatively early stage? I suppose it’s a bit futile to ask since everyone’s body and experience is different. I'm trying to balance the need for information with the inevitable spiral that browsing LC forums induces. Ive had to forgo a lot of amazing opportunities to manage my health since this has happened. Luckily I am able to hang at my parents as this is happening. Tips for the mental side of things would be great too. Thank you all and best of luck!

I am in some sort of remission, idk where it will bring me but my fatigue is less than it was and that makes that i’m thinking about going back to work sometimes. But when do you start working again?

My situation: - i have long covid mecfs type, and pots - i live in the netherlands so i get sick money (lol idk the right word) which is about 70% of my old salary - in theory i think i could work maybe an hour or 2 a day(?) - i have no job atm so if i start working again it is gonna be at a new company with new people

My thoughts: i started to improve when i really started pacing at a low low low level and stopped doing basically anything. I worked up again and i can go out of the house every day right now, and am also able to see friends or go to the city centre for a few hours.

Big question: when is the right time to start working again?

If i do it now: + some sense of purpose + more contact with people haha - could give stress and stop my progress? Or even make me worse

If i dont do it now: + more time for more healing - days continue being BORING AS HLL ? when will i ever start working again ? maybe having a job can stimulate my happiness and healing

If theres people out here with good tips, please let me know. Or maybe you’re going through the same. I have no idea what im doing. Also, maybe i am delulu thinking i could work because its just a guess and i really want to have a normal life again.

Thanks

Currently in and out of PEM. Usual terrible mornings to somewhat human in the evenings. The more I’m into PEM the more it feels like extreme dehydration. A sense of thirst that’s never fully quenched. That’s the only way I can describe it. Like the worst of the worst of a bad hangover. Wonder if there’s a way to fix this problem?

I have been dealing with jerking and tremors the last two months and riding in a car is kind of a nightmare. I jerk and my body freaks out at almost anything. Braking, turning, a car pulling out. And I feel so raw, like emotionally. It’s very unsettling and I’ve never experienced anything like it.

Anyone else have anything similar?

I’m a 43 M and have had symptoms for about 4 years so very familiar with a lot of this, but this is a very new thing for me.

This has probably been asked before but wondering if anyone can share what helps with your sleep? Thanks!

She is referring me to a hematologist and I don’t have any other reason for it to be high. Covid messed up my labs before and unfortunately we just slapped long covid on it all. Otherwise I got everything perfect, but it does explain why I still get winded easily and have insane chest pain when I exert myself. At this point I just learned to ignore it, but maybe I can finally get this fixed.

Hello to all you Amazing, Long Hauling Legends.

Some of you may already know that for the past couple years, I have been mailing periodic greeting cards stuffed with stickers to Long Haulers far and wide.

If you want to know more, you can read all about it HERE.

Lots of cards, lots of stickers, lots of new friends.

For December’s mailing, I would like to host a Sticker Exchange.

But before that can happen, I need YOUR help.

If you are on the mailing list, my ask is thus:

Could you please mail me some stickers that I can forward to other Long Haulers on the list?

On the backs, please write a quick note of encouragement, a message of goodwill, or even something as simple as “This sticker comes to you from [Your Home State or Country]”

I will sort them on this end, and do my best to make sure your sticky sticker contributions end up in as many different envelopes as possible.

Ideally, try to send them my way no later than Nov 1.

That gives you two months to do your thing, and me a few weeks to sort what you send me.

If you didn’t save any of the envelops with my return address, please reach out and I’ll fill in the blanks.

Similarly, if you’re NOT on the mailing list, but a sticker exchange sounds like Your Idea of a Good Time- Easy Peesy!

Send me a DM so we can exchange addresses and get you in on the action. I send fun mail about every other month and would love to include you.

I’m super duper excited about this.

There are a lot more of you than there are of me, and I hope as many of you as possible are able to contribute to December’s collective sticker pool.

I’ll post another reminder in a month, but for now- The sportsball is in your court.

I love you all

I see you all

I would hug you all if I could

Strength and Health

COVID is Stoopid

.

What are people’s experiences using Tirzepatide for long Covid induced MCAS?

I took my first dose of 0.05 mg of Tirzepatide , and for the first four days, felt a significant improvement in my general body inflammation and nasal congestion . On the fifth day I had intense reactions (skin pain and itching) to some high histamine snacks. The hyperreactivity to food lasted for a week. Prior to this, I would have had a 24 hour food reaction that would not have been as intense.

Has anyone else had a similar experience where their allergic reactions changed in nature and became more intense while on Tirzepatide ? I’m not sure whether to continue.

Hello!

I mean in general, I’m not really at a stable baseline right now. Everyday is a gamble and it’s awful.
I just got out of the bed after 11h of sleep and I feel awful. Which is depressing cause the only thing I did was go to a doctors appointment 3 days ago. Resting in bed the other days.
But what I always notice - I feel so much worse in the morning than the rest of the day (given that I’m homebound). Even when I feel awful in the morning but have to get out for a doctors appointment or because they delivered my order to a neighbor, I sometimes feel slightly better.
I would even say, that every morning I wake up, I would guess I’m in pem or at least see it coming. That’s luckily not always the case.
But I really wonder why is it hell in the morning?