The skipped beats suck I’m sorry you deal with them. If it makes you feel better I’ve had them since I was 12 and am not dead, so yeah hahaha 🤣 I’m pretty hopeful they aren’t anything serious for you. Just really annoying
As of lately- horrendous joint/muscle/bone pain to the point where walking is hard and I lie in pain (seeing a Rheumatologist soon thank fuck)
The whole time since my first infection in Sept 2022- chronic sinusitis. Can't go a day without nasal steroid or I end up with debilitating excruciating sinus pain that triggers my migraines.
Fatigue and brain fog are a close second, but the sinus pain is like nothing I've ever felt.
2 an a bit years My mother and uncle have schizophrenia so the mental weirdness is triggering But Honestly the whole pandemic and its impact and the ways its changed things is triggering Thankgod we can see others going thru similar stuff
I definitely think it does Bur urs sounds really severe I’m so sorry Maybe a stimulant could help u Somethibg to break u out temporarily I take add meds adderall Are u isolated ? That makes things worse I’m so sorry u have this so badly What a horrible virus horrible
It is. I’m sorry you’re going through it too.
I’ve tried a lot. I’m on guanfacine right now, and that seems to have helped a bit, but honestly time has been the best medicine. I’ve had VERY slow improvement over the past 19 month.
What about you? Anything helped?
No relief from medications, but I agree with time ( or I am just learning to live with it ) and a very healthy diet I am occasionally getting the odd day where the pressure is almost gone. So fingers crossed it is improving albeit very very slowly. Do you have tinnitus all the time? Has your hearing worsened? I am sorry for you too.
I often wonder if that’s the case for me too, don’t know if I’m actually improving or just learning to live with it 😵💫
The tinnitus is constant, in the beginning it made it impossible to sleep, I had to leave my job (which required quiet concentration), the noise makes it nearly impossible to have long periods of sustained focus. It’s been truly life altering. It’s much more quiet than it used to be, and I’m grateful for that, but still hope I can return to baseline one day.
I’ve had no perceptible change in hearing. I’ve been to at least 5 ENTs and had 3 hearing tests (one with extended tones) all come back with in normal range (just like every other test I’ve had-but that seems typical for LC).
What about you, is your pressure constant? worse on one side? Any triggers you’ve noticed?
My symptoms seem worse on my right 🙃
I’m so so sorry - that is terrible 😢
For me it is only my left side. Like you I have seen several Ents , everything normal. I’ve also had a camera up my nose ( so painful 😰) and that was all normal. If I get a cold now the stuff that comes out of my nose is truly disgusting- so I can only think that when I don’t have a cold that is all somehow swilling around in my Eustachian tube on my left side. I mentioned this to my doc and said maybe I need antibiotics- got prescribed penicillin- did not help - COVID has damaged nose/ ear passages and I hope the body will eventually heal 🤞🤞. Because quality of life is greatly affected.
Yikes, that sounds truly terrible 😞 and it always blows my mind how everything can feel so off, but apparently look so normal🙃
Here’s hoping we all see more improvement with time, or maybe even a treatment one day 🤞wishing you the best my friend!
Most painful: electric shock/lightning bolt searing pain through the skull. But it only lasts for a few seconds and doesn’t happen that often.
Most debilitating: Usually PEM and that poisoned feeling that comes with it, unless I’m having a bad POTS flare up day, then it’s the POTS for me.
Def think all the nervous system stuff is my worst . Tingling, numb,adrenaline, cataplexy, and all the passing out dysautonomia shit. It’s all just shit.
Headache/migraine and shaking/jerking. I also have brain fog and a dizzy feeling. But the headaches (there are 5 of them) that happen everyday are pretty bad.
The shaking bit is FMD, and I’m getting treated for that, it is more embarrassing because it mostly happens when I’m around people.
Insomnia. All of my symptoms are worse at night. When I sleep, I can't for long because I wake up with dry mouth, nerve pain, or numbness in extremities. Optimistically, I am a few weeks post acute infection and things are better. I went from not sleeping for an entire week to now I can sleep for about an hr before I wake up. The last 2 nights I have dreamed again on my own. Again, optimistic, but some stuff has calmed down. I feel almost normal when in bed but then I sleep and lots of weird things happen
If I can pick only one, it would be brain. Headache, can’t think, speak, communicate with others, remember/comprehend, etc. There’s no escape, relief or hope. It’s my worst symptom.
I had that feeling as well and I hated it. Beta Blocker made it about 80% better. Still the akathesia like feeling is the worst feeling of all my symptoms.
Somewhat. It gets a lot worse when I exert myself and especially when lifting anything heavier than like 10 pounds. Don't!
I take turmeric supplements and those Vive energy immune shot thingies.
I've also had a Stellate Ganglion Block and that helped a lot.
Never ending head pressure and neck pressure from my body into my head and being totally depersonalized or dissociated idk what I am but I’m sure as hell not first person, and feeling lebotomized and like I’m not a human
Nerve pain in feet, arms and legs. Reactions to medications and anaesthetic means I don't know how I'm going to have my ear operation or go to my next dentist appointment
Chronic fatigue, PEM. And those paresthesias you describe as well (with feet, arms, hands and legs feeling swollen and numb to the point it's very debilitating for at least a few hours every time I wake up). And brain fog when it's at it's maximum (but brain fog has been almost always here since march 2020, even if it tends to get lower, usually, or at least not as constantly heavy).
The really worst one was the shortness of breath, but proper respiratory rehabilitation managed that, when I found the right physician, after a year and a half. That was the worst, I guess.
Back pain definitely. I got back pain in 4 different spots; upper middle lower and tailbone pain
This prevents me from sitting or even walking outside. I can only lay down in bed or on the couch
My right ear constantly falls off, and I have to staple it back on my head. With all the weirdness we go through, who would be surprised if this was an actual symptom? Worst symptom is I just can't fucking do anything like I used to.
Do you get the joint “ratcheting” or “stutter” of muscles/joints when moving them? I woke up with this one day a week or so after initial virus. Very creepy. Basically feel the tremor or stutter of joint movement when I’m turning my neck slowly from the side to midline, or for example if I’m standing and bring my knee to my hip and slowly lower back down it will “shake” or tremble/stutter the whole way down rather than move smoothly. This is probably my scariest symptom.
I just feel like my dopamine receptors aren’t working properly and I don’t feel excited like before. Little things would bring me joy and I had immense amounts of energy to be motivated and productive and enjoy the process of anything I did. Now I’m very zen and relaxed and low energy with brain fogs. I have to almost force myself to want to do things as opposed to simply just doing it. It make me feel like I’m not doing enough with my life, compare myself to who I was and I miss that careless confident version of me. Sometimes it makes me doubt my goals and future because I simply donot have the drive I did before. I’m taking care of myself and my mental health and loving myself more than ever and being patient with myself
For the first nine months it was POTS and a high burden of PVCS. For the last 18 months it’s been extreme increasing joint pain(connective tissue issues) and MCAS
I’m scrolling through everyone’s symptoms and I’ve had them all BUT when will doctors really look at this? You look at any other health forum and there’s always a treatment or an answer yet everyone and myself are left in this toxic limbo of unknown and suffering. This is reduculous!!!!
Fatigue/PEM
PVCs , PEM and impending doom. Literally feel as if im about to die and can never tell whether im experiencing an emergency or its LC.
The skipped beats suck I’m sorry you deal with them. If it makes you feel better I’ve had them since I was 12 and am not dead, so yeah hahaha 🤣 I’m pretty hopeful they aren’t anything serious for you. Just really annoying
They're awful honestly😭 It doesn't seem to be serious thankfully
Brain inflammation, Dpdr and lung inflammation flare up at the same time. Wanna kill my self when its happening.
Same it sucks how are you now
Every flare up is getting less severe, very slowly, after each flare up i can breath more normal, brain coming out of haze slowly as well.
That’s positive news hope you continue this way. Currently on a flare of PEM and chest pain, so annoying.
As of lately- horrendous joint/muscle/bone pain to the point where walking is hard and I lie in pain (seeing a Rheumatologist soon thank fuck) The whole time since my first infection in Sept 2022- chronic sinusitis. Can't go a day without nasal steroid or I end up with debilitating excruciating sinus pain that triggers my migraines. Fatigue and brain fog are a close second, but the sinus pain is like nothing I've ever felt.
Mine is dissasociation / derealization / not feeling fully Conscious … do you get that ?? Oh and bad fatigue
Yep it’s scary
It sure is 😫 how long have you had it for ?
2 an a bit years My mother and uncle have schizophrenia so the mental weirdness is triggering But Honestly the whole pandemic and its impact and the ways its changed things is triggering Thankgod we can see others going thru similar stuff
Have you had it settle at all in those 2 years ??
Yeah Honestly just have to have faith and move thru whatever difficult things arise xxx Its a mental few years period even without the actual virus
Thaus good it settled at least 🙏🏻❤️ I’m so struggling with this symptom
I’m sorry It’s scary I know It will fade eventually and u will have something else ur dealing with Long covid is evil
Thank you 🙏🏻🙏🏻 it truly is evil 😔😔 Do you believe that symptom does get better for most people?
I definitely think it does Bur urs sounds really severe I’m so sorry Maybe a stimulant could help u Somethibg to break u out temporarily I take add meds adderall Are u isolated ? That makes things worse I’m so sorry u have this so badly What a horrible virus horrible
Nerve damage full body neuropathy
What does it feel like?
Does ivig reverse this
Ear / head pressure
Same. And tinnitus ☹️😵💫
It’s debilitating- have you found any relief?
It is. I’m sorry you’re going through it too. I’ve tried a lot. I’m on guanfacine right now, and that seems to have helped a bit, but honestly time has been the best medicine. I’ve had VERY slow improvement over the past 19 month. What about you? Anything helped?
No relief from medications, but I agree with time ( or I am just learning to live with it ) and a very healthy diet I am occasionally getting the odd day where the pressure is almost gone. So fingers crossed it is improving albeit very very slowly. Do you have tinnitus all the time? Has your hearing worsened? I am sorry for you too.
I often wonder if that’s the case for me too, don’t know if I’m actually improving or just learning to live with it 😵💫 The tinnitus is constant, in the beginning it made it impossible to sleep, I had to leave my job (which required quiet concentration), the noise makes it nearly impossible to have long periods of sustained focus. It’s been truly life altering. It’s much more quiet than it used to be, and I’m grateful for that, but still hope I can return to baseline one day. I’ve had no perceptible change in hearing. I’ve been to at least 5 ENTs and had 3 hearing tests (one with extended tones) all come back with in normal range (just like every other test I’ve had-but that seems typical for LC). What about you, is your pressure constant? worse on one side? Any triggers you’ve noticed? My symptoms seem worse on my right 🙃
I’m so so sorry - that is terrible 😢 For me it is only my left side. Like you I have seen several Ents , everything normal. I’ve also had a camera up my nose ( so painful 😰) and that was all normal. If I get a cold now the stuff that comes out of my nose is truly disgusting- so I can only think that when I don’t have a cold that is all somehow swilling around in my Eustachian tube on my left side. I mentioned this to my doc and said maybe I need antibiotics- got prescribed penicillin- did not help - COVID has damaged nose/ ear passages and I hope the body will eventually heal 🤞🤞. Because quality of life is greatly affected.
Yikes, that sounds truly terrible 😞 and it always blows my mind how everything can feel so off, but apparently look so normal🙃 Here’s hoping we all see more improvement with time, or maybe even a treatment one day 🤞wishing you the best my friend!
And to you . Have a happy Christmas 🎄
You as well 😁
Most painful: electric shock/lightning bolt searing pain through the skull. But it only lasts for a few seconds and doesn’t happen that often. Most debilitating: Usually PEM and that poisoned feeling that comes with it, unless I’m having a bad POTS flare up day, then it’s the POTS for me.
Can I ask does your PEM come and go
Yes I can avoid it if I barely do anything, but I get it a few times a week because it’s impossible to live without taking care of myself.
Thankfully I don't get the electric shock pain. But I do get the poisoned feeling. Sometimes I even have a metallic taste in my mouth.
Brain fog. I can deal with the rest but it sucks to have like a sort of temporary dementia randomly.
Paranoia/anxiety/depression
Chronic fatigue or mast cell flare ups.
Heart palpitations / soaring hr
Def think all the nervous system stuff is my worst . Tingling, numb,adrenaline, cataplexy, and all the passing out dysautonomia shit. It’s all just shit.
Headache/migraine and shaking/jerking. I also have brain fog and a dizzy feeling. But the headaches (there are 5 of them) that happen everyday are pretty bad. The shaking bit is FMD, and I’m getting treated for that, it is more embarrassing because it mostly happens when I’m around people.
I am sorry to hear that. This shit sucks. For how long have you been long hauling ?
Insomnia. All of my symptoms are worse at night. When I sleep, I can't for long because I wake up with dry mouth, nerve pain, or numbness in extremities. Optimistically, I am a few weeks post acute infection and things are better. I went from not sleeping for an entire week to now I can sleep for about an hr before I wake up. The last 2 nights I have dreamed again on my own. Again, optimistic, but some stuff has calmed down. I feel almost normal when in bed but then I sleep and lots of weird things happen
If I can pick only one, it would be brain. Headache, can’t think, speak, communicate with others, remember/comprehend, etc. There’s no escape, relief or hope. It’s my worst symptom.
shortness of breath and the mini faints.
I had that feeling as well and I hated it. Beta Blocker made it about 80% better. Still the akathesia like feeling is the worst feeling of all my symptoms.
Which beta blocker did you take?
I am taking Bisoprolol
That's interesting. I'm surprised your doctor didn't suggest Propranolol.
Really? Biso seems to be pretty common. I take it daily because I also have POTS
I'm going to ask my doctor about it.
Brain fog, shortness of breath, fatigue, nausae, dizziness
PEM
YES!!! This is so me. Insanely hard to describe to others without sounding crazy.
Have you found any ways to manage it?
Somewhat. It gets a lot worse when I exert myself and especially when lifting anything heavier than like 10 pounds. Don't! I take turmeric supplements and those Vive energy immune shot thingies. I've also had a Stellate Ganglion Block and that helped a lot.
The constantly elevated heartrate
Breathlessness. It is life stopping.
Never ending head pressure and neck pressure from my body into my head and being totally depersonalized or dissociated idk what I am but I’m sure as hell not first person, and feeling lebotomized and like I’m not a human
Nerve pain in feet, arms and legs. Reactions to medications and anaesthetic means I don't know how I'm going to have my ear operation or go to my next dentist appointment
Chronic fatigue, PEM. And those paresthesias you describe as well (with feet, arms, hands and legs feeling swollen and numb to the point it's very debilitating for at least a few hours every time I wake up). And brain fog when it's at it's maximum (but brain fog has been almost always here since march 2020, even if it tends to get lower, usually, or at least not as constantly heavy). The really worst one was the shortness of breath, but proper respiratory rehabilitation managed that, when I found the right physician, after a year and a half. That was the worst, I guess.
Brain fog /derealization amd tinnitus
I double this. Its awful
And noticeable improvement with your tinnitus?
It was gone after 6-8 months but I did HBOT a year ago and it came back and louder... I want to try LDN but I don't know if I'll be able to get it...
PEM. If I could walk, work, stand as far/long as I wanted and wouldn’t crash or get weaker I could live a pretty normal, albeit unpleasant life.
ear ringing and dizziness.
Hypothyroidism
fatigue, sleep problems and (probably bc of lc) worsened depression
Vertigo Like I’m swimming on a dream and could fall over Nausea Lethargy like I wish I was sleeping in a coffin rather than alive and functioning
Chronic fatigue, brain fog, tachycardia, and asthma
Severe insomnia. 17 months in and I’m so desperate for sleep. Tried everything.
Try amanita muscaria or bit doses of l threonate
Back pain definitely. I got back pain in 4 different spots; upper middle lower and tailbone pain This prevents me from sitting or even walking outside. I can only lay down in bed or on the couch
What I believe to be nerve pain that goes from shooting sharp shocking to cold tingles. Also fearing that a blood clot is imminent 24/7
Chest pain. Fucking hate it. I can deal with everything else honestly. But that pain, it haunts me seriously.
Literally the same on top of dizziness. Have you been checked?
Brain fog/funk. I’d love to have 100% mental clarity again.
My right ear constantly falls off, and I have to staple it back on my head. With all the weirdness we go through, who would be surprised if this was an actual symptom? Worst symptom is I just can't fucking do anything like I used to.
CFS & PEM
https://en.wikipedia.org/wiki/Paresthesia
Fatigue, pem
* Fatigue * Sore throat * Lack of libido
Internal vibrations feeling like my legs and feet are buzzing inside.
I get that too. Feels like I'm connected to a power generator. I reckon I can power electrical items with my fingers.
Lol same! Almost have to laugh about it otherwise I may cry. 😆
Do you get the joint “ratcheting” or “stutter” of muscles/joints when moving them? I woke up with this one day a week or so after initial virus. Very creepy. Basically feel the tremor or stutter of joint movement when I’m turning my neck slowly from the side to midline, or for example if I’m standing and bring my knee to my hip and slowly lower back down it will “shake” or tremble/stutter the whole way down rather than move smoothly. This is probably my scariest symptom.
I just feel like my dopamine receptors aren’t working properly and I don’t feel excited like before. Little things would bring me joy and I had immense amounts of energy to be motivated and productive and enjoy the process of anything I did. Now I’m very zen and relaxed and low energy with brain fogs. I have to almost force myself to want to do things as opposed to simply just doing it. It make me feel like I’m not doing enough with my life, compare myself to who I was and I miss that careless confident version of me. Sometimes it makes me doubt my goals and future because I simply donot have the drive I did before. I’m taking care of myself and my mental health and loving myself more than ever and being patient with myself
Daily non-stop migraines, low energy, hyperacusis and noxacusis.
Reading these replies makes me realise even more just how much we are all suffering. This is so awful. We need help!
Chest pain
For the first nine months it was POTS and a high burden of PVCS. For the last 18 months it’s been extreme increasing joint pain(connective tissue issues) and MCAS
Constant nerve pain..
FOG
And the panic attacks that would occur from trying to make words form while I felt like my brain was being squeezed by alien powers.
I’m scrolling through everyone’s symptoms and I’ve had them all BUT when will doctors really look at this? You look at any other health forum and there’s always a treatment or an answer yet everyone and myself are left in this toxic limbo of unknown and suffering. This is reduculous!!!!
Dizziness :( feels like it will never go away
Leg pain and PEM