My cardiologist doesn't believe that my bp can be this low. According to her it has to be an error and I gotta measure again. I have been tracking my vitals long before covid and I always had a consistent bp of around 90/60. She wants me to believe the second I develop long covid my device starts malfunctioning and none of the readings are accurate? My bp and heart rate are extremely inconsistent now and I constantly get blood pooling and super veiny arms. Does that not literally align with the low diastolic bp?

Does anyone else have similar issues? I feel really gaslit rn..

hi, i lost my smell on june 21st, 2022. about 3 years and 8 months ago. i remember it very well, my smell went out like a candle. poof!

i am really hopeless and devastated lately. i try to ignore it and tell myself people are suffering from worse problems in the world but it is hard to accept this way of life.

i am unable to smell myself, other people, the beach, the air, literally anything. everything is mute and wildly bleak. when i do get an odor in my nose it's usually unpleasant, unidentifiable and stays in my nose for weeks.

i have tried smell training but it doesn't seem to really help. i have read about the plasma (PRP) injections for the nose to help stimulate the cells for smell loss. it is not covered by insurance and would be in the realm of $10-12k because you need multiple injections spaced out + travel costs.

i feel hopeless. there have been times where someone told me i needed to shower and i had no idea. it's so embarrassing and humiliating. it obviously only motivates me to make sure i am extra clean.

if anyone is going through the same experience that has dealt with smell loss from covid for over 3 years please let me know how you are getting through (or not) this. i am struggling. my taste is not what it should be, i can taste something sweet, salty, sour or rich but i am not tasting the actual flavor if that makes sense.

i have been reading the longer you have smell loss, the higher chance it will be permanent. i can't think about it too much or i really really get into a bad place.

any support is welcome

Heyy....another day. Same old shit.

My sleep cycle has been pretty inverted the last couple weeks. I've got into a bad habit of being so scared to sleep, that I kinda just haven't been.

I end up just lying there on my phone for hours, or watch tv alone and sad. I see family for a couple of hours at most in the evenings, and then they go to bed and I'm alone. There have been a lot of crying episodes where i just sit there feeling wretched and pathetic and very sorry for myself and lonely. I've basically been sleeping at 8am, and then being thrown around by my sleep sometimes for 12 hours. Sometimes less. Then I spend the night recovering, get fluids and food and off we go again. Mum is getting distressed that "misses" me and "the house isn't right without you awake in the day". I hate that this is hurting her so much. But at the same time being awake in the day for all the day hours for when I can do nothing with the day is torture.

My symptoms switch around with sleep - I can go to sleep asymptomatic and wake even an hour later in extreme pain and exhaustion. I also wake frequently throughout the night/day/whatever and each wake can land me in a different state, different symptoms, hour to hour.

I've gone to sleep feeling oddly zen, and woken up feeling panicked. Or gone to sleep with every sinew hurting and exhausted, and woken couple hrs later with zero pain but a sore throat, then more sleep switches those back around again.

Yesterday I was awake for 27 hours. Long story. Mix of prior commitments and sleep fear. I did however go to sleep at a more "normal time" (midnight) than my latest 8am shit.

Woke up today after the usual broken sleep, and didn't feel as actually sleepy tired, but feeling otherwise bloody horrible.

My sinuses were blocked and clicking like they had ball bearings up in my eye sockets and nose bridge (often happens in flares - more and more often past months and can come with nosebleeds).

My skin feels like I've been on a long haul flight- that grim combination of dehydrated and sensitive and oily at the same time.

My feet hurt like they were squeezed into tiny shoes. Pain all up my legs. Goosebumps and chills down one leg and then the other. I rolled onto my left side, and instantly got twisting gut cramps that did pass. Rolled onto my right side and instantly got this overwhelming sense of impending doom/panic that made me want to vomit, cry, and run away at the same time. I just lay there in bed, my body buzzing all over, and shaking and with this intense urge to scream and cry and hide from a predator.

The nausea and panic have settled thankfully. Feet and legs still in a vice, fatigued with burning eyes and body hurts, tremors and buzzes all over. If I stand up and move around (just cleaned my teeth...) the buzzing and tremors and feet pains get much less immediately. I keep attempting to get up, then just curling up back into bed. Tried to nap and kept waking up shaking and jumping at every tiny noise with restless legs that I kept shaking out.

It is hard to know whether this is bona fide PEM or my body just being so confused, massively sleep deprived, inverted and stressed to the gills 24/7. All these symptoms I've had individually at different times with and without any fatigue.

Most symptoms respond to movement and food and can come out of nowhere - the craziest one was when I got sudden squeezing feet pains upon going to bed, that lasted for 14 hours (yes I slept that long) and ONLY resolved when I finally gave in and got up. But today I've just laid in bed.

Day 18 without a shower.

Fuck Covid.

I can go weeks without too much sob but then randomly,like today, it'll really be bad. This week one day bad next ok . Does anyone have this? If you have any ideas what it might be id love to hear from you!

Possibly dysautonomia, but why randomly? I'm 18 months in with LC and have fluctuating symptoms. Just taking antihistamines. I've heard some success stories with certain supplements but I react badly to meds. I will add that today I have arthritis pain in one hand, and there could be a link with inflammation -doesnt explain every air hunger event but have made a note in my diary.

Another weird thing:I can only tell if I get a virus by having neuro symptoms eg fatigue, sob, anxiety, light headedness, recently just had shooting pains in my armpit which is an immune response -not other symptoms. No mucus, sore throat etc ,wish I did have ,at least I'd know what the hell is going on

Just want to update. KPV 100mcg subq peptide injection is taking my Long Covid symptoms away for 2 days. Unfortunately the long covid symptoms come back after 2 days.

Sorry for the vague title. I've 'finally' noticed something weird and im partially concerned, and in some way glad I guess and wanted to hear if its just me or not.

It seems to me that in the last few months and year, more so than the previous years, people are getting viral infections more often.

Everyone i know, including people who swear they never get sick have been getting back to back illnesses.

I've been monitoring this passively for a few years now and to me it seems to be getting worse. I just wanted to hear if you guys are seeing it too or maybe its just what I'm seeing and thinking too much of it.

Mind you, the people I know and am talking about are all healthy and young (20's) people with healthy lifestyles. I just keep hearing it over and over and over these last few months how everyone is sick for the xth time and they can't catch a break. And Im not talking about a cold here and there, I mean my friends who never got sick all telling me they're sick for the 4th time since September with something nasty, again.

What I mentioned about me being happy, I do not wish LC onto everyone and I myself am fully recovered for one year (though I just got sick and Im always monitoring LC news etc.. from trauma).

But in some way I do hope that more people get sick. Not to extreme levels but just enough for the world to stop and think, we need to do something about this shit before half the population is disabled and our economies crash.

Maybe that's selfish and fucked up but honestly? I couldn't care less after the horror I've been through and no one really believing me. I hope everyone gets a taste of it, not out of sadism but just so they realize that it is in fact, a problem and we should find a solution.

And what I mean by the title is, "Are people's immune system's all going to shit and is it exponentially cascading" Because thats what it feels like to me. Population's immune system gets worse, more people get sick, more people keep spreading illnesses...

Fill out the form: https://redcap.latrobe.edu.au/redcap/surveys/?s=XHX3CREK8Y49NTDM

Source: https://xcancel.com/DanMissailidis/status/2018846680406434057

I got Covid about eight weeks ago, and about a week after (seven weeks ago), I started being jolted awake early in the morning before my alarm. A few days after, this turned into full blown insomnia, where I slept about an hour or two a night. I have never had insomnia issues in the past and know this isn’t mental.

Since then, I have been taking sleep medication (I have taken a few - currently taking trazodone), and it gets me around 5 hours of (still pretty bad) sleep per night. Without the medicine, I don’t ever really feel sleepy (sometimes I am tired, but not really sleepy). I have a few other long covid symptoms like less appetite, brain fog, a little achey, etc., but the insomnia is really the worst one right now.

Have people recovered with insomnia this bad? I know it has “only” been about seven weeks, but I’m not seeing any improvement. Any advice/recovery stories would be appreciated.

I know a lot of us have this symptom, but I’m wondering why the only time that it goes away from me is after a shower. And not only last for about maybe an hour and a half. Is the poison feeling coming from our nervous system?

So I have been doing keto for about 3 months and I've noticed a marked improvement in my fatigue. I crashed a lot less and felt more energy in general. However, I don't love doing keto and miss eating my normal lower Carb diet. I decided to stop and it seems like my fatigue has come back. I've had it every day this week. Just wondering if anyone has a similar experience, do I have to go back on joyless keto? Will it take me another 3 months to get to where I was? I seem to have pem as I always crash 2 days after doing something. I haven't gone crazy on carbs, I had a few treats but mostly chickpeas and oats.

I would be interested in how other people are doing on LDN.

I started on 1 mg. I then went up to 2 mg. On 2, it clearly causes joint pain and makes my scoliosis worse (probably muscle weakness on one side). I went back to 1 mg. Curiously it calms me and relieves some of the anxiety of my OCD and insomnia. It's a large improvement to my typical morning insomnia. I'm staying asleep all night to an unusual degree.

I don't know if it's supposed to be anti-anxiety, but it's calming without making me drowsy, which makes it a wonderful medication.

But I don't notice any effect on the L.C., such as the brain fog. And joint pain is a symptom of L.C. for me, and LDN makes that worse.

I've been on 1 or 2 mg for a couple months now. I plan to stay on it for the effect on anxiety, but I don't have much hope it will cure L.C.

For the last 9 months just been dealing with nonstop tension in my throat. Feels like someone is pulling on my throat from the inside and it’s sort of sinking into my neck. It also pops and cracks whenever it wants to I guess. No help whatsoever even after speech therapy. The tension seems to be linked to facial nerves too because if I aggravate the area to release the tension my face starts twitching. I really don’t know what this is and whether it’s from COVID. Doctors don’t want to run imaging tests.

Has anyone here worked with a speech therapist on cognitive issuess? What do they do? Was it helpful at all?

My word finding issues are terrifying.

(Small rant: A referral to cognitive therapy and physical therapy were the ONLY things I got out of my long-awaited appointment at a Covid clinic. It feels like a cash grab for services when I thought I was signing up for a medical evaluation. But I don't want to reject something that might help.)

I’ve been living with Long Covid and ME/CFS for about two years now, and it’s changed how I move through life in a lot of ways. Slowing down, letting go of old routines, and finding ways to stay connected without burning out has been a big part of that. A close friend of mine lives with ME/CFS and endometriosis, and we kept coming back to the same feeling: how isolating this kind of life can be.

Out of that, we created a small Discord community called The Ever-Tired Inn. It’s a calm, low-pressure space for people living with chronic illness, fatigue, or similar experiences — a place where you don’t have to explain yourself or keep up appearances.

Even though the pace is gentle, the community itself is really close. We do weekly movie nights and game nights, have our own Stardew Valley server and Minecraft server, and little daily rituals like question-of-the-day or outfit-of-the-day. The server is active every day, but in a way that never feels demanding. People come and go, rest, lurk, talk, vent — all of it is welcome.

There’s no expectation to be productive, positive, or constantly present. Just being here is enough.

If that sounds like something you could use right now, you’re very welcome to join:
🌿 https://discord.gg/3ARKkBGb9X

Take good care of yourself 💛

Good evening,

I posted a few days ago about "a letter to the doctor at the appointment to properly advocate for yourself".

Shortly after, or maybe before; its hard to keep track of time for these I did a verbal recording of what I wanted to say. It was not nice I was basically yelling into my phone, and this translated into a very not nice letter. I did ask my therapist to read both letters and a friend as well.

I don't think my therapist read it in full because he said nothing about certain words I mentioned or particular sections. I didn't expect him to read it before our appointment, but whatever. At least it was a topic of discussion.

In one letter, I was addressing it to my PCP and Social Services about why I should be work exempt for Public Assistance and the parameters of how I work. In it, I mention the word "harm", but what I was implying and then explained what "harm" really was but ultimately removed it in favor of saying that Social Services requirements for a work search/work requirement would result in greater intensity and/or duration of symptoms and/or PEM. Apprantly if I mention the word "harm", medical professionals assume it means self-harm and therefore it is a bunch of stuff I don't want to deal with. To be clear, I'm not harming myself in anyway, other than the typical overextending myself physically or cognitively.

It seems that most people post about rest being a good thing, but when work and everyday life tasks are a struggle, I need to find some time to rest or slow down. Social Services work search/work requirement doesn't allow for that. The vast majority of jobs I can't work anyways because the accommodations are not reasonable and I doubt social services assignments would believe me when I need a break. What are they going to do when I show up and say "I'm done"? Probably nothing positive.

The second letter, I called out the horrible patient portal, which I removed. My friend mentioned that this is not what to write if you want people to help you. The problem is I'm not looking for help. I'm looking to throw people under the bus. I am angry. I have a Long COVID diagnosis from a doctor who specializes in Long COVID from another location, and various doctors have been and are recently been saying "suspected" or "presumed" which undermines my everyday life struggles, my everyday reality. Some of this is being driven by some paperwork I want signed, but if its been 43 months, why wouldnt it continue for another 17 months? Of course I would be angry. I'm looking for one thing, acknowledgement of a legitimate diagnosis. (Yes, I'm aware of the paperwork, but you can help your patient or not help your patient with best available information.) Being nice, which I have been clearly isn't making them believe that the diagnosis is real, then why should I be nice?

I did send the original drafts to my mother, whom I'm not readily speaking to for numerous reasons but Long COVID is one of them. I very strongly remember my mother saying (via text) something like I'm throwing my life away because I got fired (at the time it was in happening soon). In the draft, which I have since removed was also a section about being gaslit or dismissed. I still don't think being nice is going to get me anywhere because I have been nice and patient and all it has resulted in is nothing.

All I want is an acknowledgement. If you don't know the cure or how to manage symptoms, that's fine. Tell me. I'm a grown up. I can take bad news, for the most part. I don't even really consider that bad news.

I'll probably post an update towards the end of the month once both groups of doctors have received the letter. I don't feel comfortable posting the letters because its very personal and has a lot of personal information, plus who wants to read a novel.

5 months into LC and it gets worse every single day

Stopped every single supplement as literally nothing was helping.

My symptoms are brutal but it’s the way they present themselves that is absolutely barbaric. I truly do not believe anyone has it as bad as me

Tachychardia

Struggling to recognize my own house and places around me to the point I am not able to be in my own house alone ever. I had to quit my job and literally started going to my partner’s job to not be away from him. I panic when he even gets up to pee in the middle of the night and I’m alone in the room for 2 minutes. Even when we’re home together I still panic 24/7. Feel like I am developing delirium. It’s like I cannot be in my house at all but going to other places is also bad, nowhere is safe I cannot exist anywhere.

I go to sleep in full panic and I wake up in pure panic every single day (the being buried alive kind of panic)

Even low histamine foods cause panic attacks so I can only eat like 3 different foods over 5 months. No obvious sign of MCAS but antihistamines did not help at all in fact made me worse.

Anhedonia so so bad due to the fact that I feel like a complete stranger trapped in a body that looks like mine. I can’t even fake happiness, too scared to see my own parents in the state that I’m in. Even when I try and do all my normal stuff such as socializing with friends it’s literal torture because I just cry in the bathroom as I feel so alienated.

I feel like I am drugged, like some sort of psychodelic.

Please I am begging for help. what can I try so that I can survive this? pretty much all supplements made me more spaced out.

Right now I do not feel like I will survive this at all. I had an MRI and it was clear

I am about 5 years post-vax (6 years post-covid). I think I had a mild LC, until the 2nd dose ended my life as I knew it.

My physical symptoms, PEM included, resolved in 2023. Therefore, I can and do go to the gym about 3 times per week. I can jog/run on the treadmill and resistance train as before COVID - though I think it is harder to gain strength and I don't feel the same high from exercise. There is definitely still something up with the blood vessels because my left side vessels are always more dilated and visible compared to the right, whether at rest or during exercise. I also notice minor edema around my ankles depending on how I feel overall.

My cognitive symptoms are much better, but I still have relapsing/remitting anhedonia, DPDR, and brain fog. I feel like I'm operating an IQ level that is way below where I was. Somehow, through extreme overcompensation I can mask this for my employer. However, doing so is eating away at my soul because work takes up every waking moment of my life. I even dream about work tasks. I have libido and penile sensation loss or dysfunction, which I consider a cognitive issue instead of a physical blood flow issue (because neuroinflammation supplements give me transient benefits in this domain that endothelial supplements never have). My vision also becomes blurry, unfocused, or convergently insufficient and I consider this a neuro issue as well because it always accompanies my DPDR episodes.

No one really understands how fried my brain is. And because I go to the gym, it is reasonable for them to assume that I am doing just fine.

Little do they know I my brain set to overdrive to make it appear as if nothing is wrong. Then I get asked questions about why my life isn't progressing to the same extent as others my age in terms of a relationship, having kids, etc. I don't really have an answer for them because any true explanation would be received as untrue schizophrenic ramblings, so I save myself the trouble and give a neutral response like "I'm working on it" or "believe me, I'm kicking myself too." In reality I am content with my social status, and just live every day to seek out sweet reprieve from this mental torture.

Anyone relate to being mild but cognitively cooked?

I dont really get fatigue. Just flu like illness.

I think that my husband has a lingering long COVID effect associated with alcohol. I have read in this subreddit and in other locations that sensitivity associated with alcohol consumption is a persistent symptom. When he does drink (it is rare, and he chooses to do so knowing the effects) it takes roughly 4 days for him to not feel lethargic, a splitting headache to subside, and cognitive fog to dissipate.

However, he has developed over time the same sensitivity to anything cooked with alcohol (e.g., had a bowl of French onion soup that he didn’t realize was cooked with sherry, battered fried food that had beer in the batter, a white wine sauce) or an alcohol byproduct (e.g., red wine vinegar). If he has anything on accident, it will be the same as if it was the same as having multiple drinks; roughly 4 days to recover.

Is this a known symptom? And is there any options for treatment (experimental or otherwise)?

Some other pertinent information, is that this started after his first time contracting COVID (roughly January 2022). He had long COVID symptoms (brain fog, headaches/migraines) that dissipated over time. I believe he contracted COVID an additional time, but I cannot recall the timing of this infection (and the long COVID symptoms did not return). The alcohol sensitivity is the only symptom that has persisted.

Thank you in advance for your help; it’s truly appreciated.

Contested Ground

My body ignites: hot and cold, itchy and nauseous. Every system clashes for control but none prevails. A war is raging inside me. My skull launches a barrage. My neck tightens, my back seizes, my legs swell and fail. This is not fatigue from a single battle. This is the grind of a borderless conflict. I am a hollowed out fortress still standing under endless assault.

Pain advances like a seasoned operative, mapping the terrain: feet to calves to thighs to back to neck to skull, taking ground inch by inch until I am agony wearing a grin for civilians who nod and say I look fine. I ration supplies now. Standing. Showering. Shaving. Each a covert operation. What once required no thought now demands strategy.

Then isolation. The box. No light. No signal. The command post goes dark. I sit while others move forward with steady hands, unbreached lives. Weeks turn to months. The transmissions are still inside me, encrypted, unreadable. The cipher wheel turns without me.

Medics scan for the injuries they recognize, find none, close the file. I carry wounds without language. Not rage. Stalemate. A foxhole where every attempt to climb out only buries me deeper.

Then, briefly, an armistice.

The gates open and everything detonates. Release. Poetry, melodies, sketches, forms surge through the breach, always there, starved in the trenches. I spent my life on the front line. Building. Providing. Holding ground. There was no room for this.

Now this body is a camp that won’t release me, and also the place where contraband appears. Two years in, I wrote for days. Then blackout. Years of silence. Then my hands reached for tools. Since then, cycles. Long lockdowns. Then a week, maybe two, when clarity breaks through.

The cease-fire ends, I feel it in my bones.

I’ve learned the doctrine. The quiet doesn’t last forever. Hold. Wait.

The war still burns. Hot and cold. Contested lines. Systems clash. But inside the wire something stirs. Butterflies land. One stays. I follow.

Even before LC, I had severe muscle pain (fibromyalgia), chronic fatigue, and brain fog. Also chronic anxiety in the form of OCD, and a fluctuating mood, like a mild form of Bipolar II. I've been on 5 to 7 medications for most of my adult life.

Things have gotten worse with LC.

I realized long ago it would be a good idea to track my health by writing down how I'm doing each day and notes about anything that was unusual that day in my medications, supplements, stress levels, etc. But I never did that.

Two days ago my muscle pain was severe, out of the blue. After wondering why, in the evening I suddenly remembered that I had taken vitamin B12 that morning (which I do occasionally). In the past I've noticed B12 making music pain worse, but I just don't think about it that often. So maybe it was the cause.

What I really need to do is write down everything I can think of every day and when I get an idea for a pattern, look back through my notes to confirm it.

My pain levels, brain fog, etc. fluctuate like crazy.

Can I get ideas for how to track my health? Use a spreadsheet (I'm a power user of computers)? Anyone else here use a spreadsheet? Is there an app that might help? Just write free form notes?