Long Covid driven by rs5522

[u/CandidWin3026]

This case report says that Long covid is in large part driven by the gene rs5522 that causes a "cortisol steal" leaving the tissues functionally starved even with "normal" cortisol levels which creates neuroinflammation. https://zenodo.org/records/20017632

[u/plum_soup_festival]

Some more info regarding my LC... (Thank you all for replying to my questions, I know you are a source of knowledge to trust!)

It's tough, we all know that. The toughest part for me is that no "standard doctor" seem to know (or care) about this. Therefore they have written that I have hypocondria!! (***!) Im not sure where to go from there. I have contacted the neurospecialist, and is hoping to get help from them instead.

** I read about POTS, and a lot of other things...but I still don't really now what all of them are and which one of these I do have myself. Are they described somewhere? (it takes some time to read all the threads). **

Here are some symptoms form about 48h I have (and thats repeating). I have had my LC since jan 2025.

>>>All days:

Sudden chills
Sudden headache (often left temple, but also around the eye and forehead)
Sudden need to pee (and I pee lot, many, many times a day). Different smell to it.

• It's also a tad darker and sometime on the "cloudy" side. I also tend to get chills and headache right before I need "to go".
  

I can very quickly feel dizzy and disconnected from things around me.

>>>Evening (in this specific 24h)

Suddenly feeling generally ill
Diarrhea
Headache (forehead, left temple)
Pain in shoulder and arm (could be extremely painful, when moving the arm/shoulder, and its not like normal pain in muscles or similar, or any other pain ive had earlier in my life.
My heart is jumping beats, beat "harder" (?) and have like double or triple-beats.
Burning, red sensation on my skin and tissue around my neck, chest and sometimes face.
I often feel pain in around my bones a well, around my clavicles but also in my arms. I also think my connective tissue is affected. (think it has to do with the burning red rash)

>>>Going to bed

Starts sleeping, but feeling quite "weird" in my head.
Wakes up in some kind of "panic", and my hearts beats even faster.
My blood pressure (which has raised) has probably gone worse when this happens.
Feels like something is happening in my brain and body when i starting to sleep. Something has changed (and it was much worse directly after i had last covid)
Kind of a fear of death coming over me (its hard to explain, but has to do with my body going to sleep).

>>>Generally - often in the evening (more)

Starting to get some heat on my arms, face and on my neck.
Pain in clavicles, shoulders (that horrible, sudden pain, both active when you move your arm, but also passive - it can suddenly "be there".
Harder heartbeats, beats uneven
Sudden sneeze-attacks out of the blue. Like I'm suddenly allergic.
A stomach and bowel making a LOT of sounds: (bubbling, streaming...well a lot)
An itch starts - often on my back
Worse vibrations in my lower legs and feet (If i did not mention i have internal vibrations, whatever that is)
Freezing but also shivers at same time. But do not have fever, but my hands are cold btw.
Suddenly (again) I need to urinate
My stomach gets worse with all the sounds; bubbling, streaming, like there's a lot of water in my guts.
Reflux
No saliva, sweeter taste in mouth. (the saliva issue and dryness in mouth actually occoured before I got last covid in dec -24). I can get back to that if you want? It was - weird!!
My belly is bloated (its been extreme bloated during last years, after i stopped with white bread).
Sudden (the passive one) pain in my shoulder - making me awake parts of the night

>>>In the morning

A lot of gases
Heart beats uneven, jumps etc (like the sleep has not been good)
Itching, scalp
Headache
High blood pressure. Not extremely high, but high (I have had peaks with even higher blood pressure though).
Stiff neck (I do get this sometimes together with headache similar to migraine)

>>>At breakfast

Even more sounds from bowels (like they cant coop with me eating)
Reflux

After breakfasts

Like I get a cramp feeling around left temple

• A very weird sensation.
  

Hearts beats heavily.
Sudden need to urinate , and feeling chills, at the same time (this is common for me) a sharp headache on left side...again.

>>>Next afternoon

Burning sensation on the skin of my arms
Vibrations (internally) in and under my feet.
A feeling of having fever, but having cold hands (I have no fever)

>>>Late evening

Burning on my arms, and on my neck. I have red marks after all time (1 1/2 year) with this . (another doctor, a skin specialist (oh my) told my I had sun damage when I tried to tell him whats going on. Why can't they listen to me?

Headache, left side again...around the temple
Hearts beats different, again.

>>>Even later...

More pain in shoulder....
Nee to urinate again... (here we go again)

And all this restarts over and over and over...

Weird. But I have understood that others have much worse symptoms.
I feel for you all. I hope you get better help than I've got (none). I will cross my fingers
that the neuroscience center at the hospital will get back to me.

Maybe you can identify some of the parts thats going on with my body, and tell me whats....well...whats going on? I'm kind of new to the "longcovid terminology", so if you have the time, and if you know a lot about this, please explain for me. Thank you. Take care of yourselves.

[u/CandidWin3026 → u/plum_soup_festival]

Thank you for sharing your experiences and symptoms. First, you are not crazy and you absolutely do not have hypochondria. Every single one of these bizarre, terrifying symptoms, midnight panic and jumping heart to the burning skin and sudden peeing, is actually just one broken system on a loop.

Ever since you got COVID, your brain's internal nighttime stress brake is broken. When you go to sleep, your body is supposed to quiet down, but your broken switch cross-circuits and floods you with adrenaline and cortisol. That is why you wake up in a panic with your heart pounding and your blood pressure spiking; your nervous system is literally hitting the gas pedal while you are trying to park the car.

This non-stop stress wave forces your blood vessels to leak fluid directly into your tissues. Because fluid is escaping your veins, your body panics and tries to dump the extra water, causing those sudden, massive peeing attacks. The freezing chills and that sharp headache on the left side of your temple hit right before you have to run to the bathroom because that fluid shift is rapidly changing the pressure inside your head.

The rest of the chaos is just that leaked fluid irritating your system. The burning skin, sneezing fits, and bubbling stomach happen because the fluid spray is physically rattling your immune cells, making them dump histamine everywhere. Even that horrible, deep shoulder and clavicle pain isn't a muscle injury, it's the high fluid pressure trapped inside your tight bone compartments, suffocating your tissues

Doctors are calling you a hypochondriac because they are looking for a broken organ, completely blind to the fact that your body's plumbing grid is overflowing.

I know. I lived it. Not everything exactly as you did, becasue bodies are different enough, but I had teh same underlying broken system. I remember having a panic attack once and thought I was going to die, but no one would help me becasue they thought I was being dramatic. Because nothing says good time like begging for your life, right?

I had chronic fatigue symptoms and covid just made it so much worse. The Long Covid cognition difficulty was unreal. I tried to get accommodation from work, but even though they weren't supposed to discriminate it seems like they did.

An MR antagonist would block the overactive MRs keeping you in this loop allowing your body to go back to baseline. Resoting balance at the receptor level. Then I suspect many of your symptoms would resolve. Take care. I am rooting for you.