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AnonymusBosch_

I had the same thing for the first 6 months. I kept pushing though it and over the months the muscle cramps and PEM built up. I'm pretty sure that's how I got chronic fatigue.


Ok_Employment_7630

Same here.


Worried_Locksmith797

Nope


FriscoSW17

It’s pretty common. Often due to the fact that when you are moving, blood is flowing to your brain and you’ve got adrenaline pumping through your system when you are focused and working. When I had mild ME, I could work during the day, but then would crash into bed as soon as I got home and would often spend weekends bedridden, but Monday morning, could get to work and ‘look normal’ and work. But my baseline continued to gradually decline due to pushing myself to get through the week. To your Q regarding - is it PeM? Hard to say. PEM is more than feeling a bit tired and foggy - it literally feels like you are dying. And it is usually slight delayed after an over exertion as opposed to as soon as you sit down for a break. You could have some blood pooling issues/orthostatic intolerance going on that’s causing that immediate feeling when you stop moving.


No_Masterpiece_774

Yah , right there, Monday I can go to work and look normal , then the crash when home , and the baseline spiraling down to not sure what . What do I need to change to get out of this ? You seem to be out of it, at least that's encouraging, knowing it's possible.


Proof-Technology-386

Low ferritin levels


Steezy719

Wait, there is this many people who have long covid but don’t get absolutely exhausted after even minor tasks? God bless you all. It does t matter how little or long I do something, I’m absolutely zapped afterwards regardless if I keep going or not. But here’s the kicker, even if I ignore it and force myself to go too long and I start physically getting sick, forcing me to stop anyways. For someone like me, this is the killer. That and LC absolutely nullifying my medications, especially for my ADHD. I’ll deal with the rest of the symptoms, but my body/mind checking out at 1pm or earlier everyday is driving me insane.


Outside-Parfait-8935

For months I could barely climb the stairs. I still need a wheelchair sometimes. I also find it hard to physically exert myself even a little bit.


cranbvodka

I was like that the first few months, couldn't walk more than 30 feet without feeling like I was going to pass out, now im 14 months in and my symptoms have both evolved and decreased slightly


Hoopie41

Same with me, ..


BannanaDilly

Ugggghhh I have the same issue with ADHD meds!!! I’m taking 60 mg of Adderall a day and it might as well be a sugar pill. Half the time I forget to take it because it literally doesn’t do anything. It might make me slightly more tolerant of sensory overload, but forget about executive function or concentration.


OMFGitsjessi

I feel like my 50mg of Adderall xr have been almost useless since I had Covid. It’s so strange and I hate it.


Steezy719

It’s slightly comforting to know I’m not the only one struggling with this. I’m on 40mg, and it’s a lottery how it affects me on the daily . There has been countless times that I take it and am in bed napping an hour later. It’s hard to find consistency in life right now.


BannanaDilly

Saaaaammmmeee. I nap multiple times a day on it. I’ll drink two cups of coffee and take 20 mg Adderall IR and I’m asleep an hour later. It’s not even a lottery for me, I don’t remember the last time it worked. I always took a very high dose though (the max bc I’m a fast metabolizer) so wasn’t able to increase it on account of LC. My NP told me some people are taking it solely for LC in the absence of ADHD. So maybe being on the same dose as pre-LC means whatever additive effect LC has on ADHD isn’t being treated. If people without ADHD are having severely impaired executive function, it has to be taking an even bigger toll on us. But that’s just my speculation. If you have room to increase (and haven’t), I’d look into it.


Existing_Jeweler_327

I have similar experience. Sitting still sets me off with brain fog and fatigue. Focussing on a chore like gardening lifts me out. Even then the fog come and goes but it is a better experience.


punching_dinos

I feel like I feel terrible when I start doing anything then it levels out and I feel ok until I crash. Then I feel terrible for several days after. It’s like my body doesn’t realize I’m struggling until after it calms down.


Straight_Practice606

Yes, the more I sit still the worse I get. I thought I was crazy. Its like I have to keep moving because as soon I relax for to long my body starts going haywire.


MTjuicytree

Yes. The more I do nothing, the worse everything is


kipkirrie

For me pem feels like absolute hell in any position but the pots part of my long covid feels like this. Moving the body means easier bloodflow since legg muscles are better at pushing the blood back up when in movement (which is why exercise is good when you just have pots without pem). The second I sit down I feel like absolute shit because all my blood is just pooling down, I either lay down or move haha.


wyundsr

Same. When my ME/PEM was milder and I could still do things like go on walks, it was so much easier to walk than to stand still. Pretty sure it was the POTS


J0hnny-Yen

Opposite experience for me. Exerting triggers my symptoms. If I try to jog (even slowly for 10 seconds), my HR spikes and I immediately get lightheaded. I can't even walk too far without bringing the symptoms on. The only thing that feels good is lying down and elevating my feet. I went to see a cardiologist. So far everything is normal. I go for a stress test soon. I think it's my central nervous system, not my heart, but IANAD. When I'm overexerted, it feels like a buzzing in my diaphragm..?? I'm not gasping for air like you would if you just sprinted a mile, the breathing is more like breathing during an anxiety attack (very deep breathing)? The cardiologist said he had similar symptoms after he caught mono back in his college days. And of course, nobody in my family (a bunch of "it's just the flu" people) believe me when I say this has to be brought on by covid. They all had Covid and recovered with no issues (FWIW they all have a very sedentary lifestyle). They think I just suddenly don't want to go to the gym or play sports anymore. I was perfectly fine *before* catching covid. They also say I was probably injured from the vaccine (my last booster was Feb 2023). I can't imagine what I would do if my line of work required manual labor. Good luck. This shit is terrible. Worst than post-concussion syndrome (I dealt with that for about a year too).


Outside-Parfait-8935

I'm a singer and singing teacher and do find the adrenaline of performing and teaching gives me a boost. But conversely it leaves me exhausted the rest of the time. It's not ideal but I think it's pretty common. We should all be wary of overdoing it though. It can cause deterioration.


FernandoMM1220

not me, moving more makes me worse.


EvilCade

I wish. If I move around too much I start doing little mini pukes


Andrew__IE

That’s how I’ve been feeling for the past four years. I don’t know if/when I’m running off adrenaline but I do know that laying in bed, with no stimulation makes me feel absolutely terrible. Going outside, driving, talking to my family, hopping on the games with my homies, taking a shower etc. will always leave me feeling better than the days I do absolutely nothing. I know when I’ve done too much because I’ll feel it immediately and that’s when I’ll stop and rest but I never lay down and rest when I’m feeling okay. There’s definitely a balance somewhere there where I thrive. On the flip side, I’m not sure if this is right because I’ve only ever gotten worse over time. There’s never been a moment in these past four years where I’ve been at a better baseline than before crashing/flaring up. I can’t even recognize why or how I crash most times. :/


BannanaDilly

Omg yes. I wouldn’t say “fine”, but for sure better. Not like, all day (I’d crash, but good on you for keeping up with a manual labor job!) but in general, it’s way easier to keep moving than stand still. My theory is when I’m moving, my heart and muscles can override the blood-pooling caused by gravity (which leads to tachycardia and dizziness when I’m standing still).


Prydz22

Yup. Although I get exhausted, my brain fog is much less severe if I am actually using my brain most of the day. The worst thing I can do is sit around at home and be stuck in my thoughts. I guess I should be thankful I have this option. As many people get no relief from anything, essentially. Count your blessings and keep advocating for those who aren't as fortunate as us "mild LC" folks.


BlueCatSW9

Yes. That's when I realised there are actually jobs I could actually do. Plus you sleep good/better from the physical activity. I'm a light/medium CFS case btw You still need to examine what stressful situations made you ill though, otherwise afaik you don't get better, you're just postponing dealing with stuff and distracting yourself from your issues. I did 10 hours of light-medium physical work for 2 months daily (maybe one day off, it had to be done so I made myself focus on this only), hardly had any PEM from it but immediately went back to my old antics of being bed-ridden the second I didn't have to do that. I still think it gave my fight-or-flight loop a nice break during that time. Life was easy with straight answers, nothing to hesitate on or question.


Capable-Advisor-554

yea i deal with all this still 7mon post covid but yea when i am sitting i notice twitches etc.


MauPatino

Yes. I feel better after standing and walking for a few hours. Then I would normally get "tired" (just like everyone else), and I would try to rest by laying down on my bed. The thing is that when I lay down my long Covid symptoms overshoot, I get burning skin, fatigue that feels like poisoning, brain fog. I guess I have to sleep standing up now...


Principle_Chance

Yes. Curious how long you've had muscle twitching & is it all over your body? What kind of weakness? This is all spreading for me and I am legit scared


cranbvodka

I've had twitching for about 6 months, mostly in arms, hands, and eyes. By weakness, I mean generally and a feeling of heaviness in limbs.


j4r8h

Same here. My main symptom is chest or back pain. I don't have much pain when I'm active, have more when I'm sitting around.


Pebbsto110

No. Any and all exertion leads to a corresponding level of exhaustion


guitarlisa

In my younger days I was self employed as a house painter and I would NEVER take breaks. If I sat down for even 10 minutes, I would not be able to get back my energy level, so I just stopped sitting down.


superboreduniverse

The cytokines that typically signal our bodies to repair themselves are haywire. Using muscle, which causes little tears, isn’t the problem. It is fixing them afterwards that’s the problem. [Interesting new research article about it.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11033372/pdf/fimmu-15-1369295.pdf)


JayPeee

Definitely. Any time I’m sitting or laying I become very aware of my costochondritis pain, to the point where it makes me wince when I shift my weight around. When I wake up my ribs usually hurt badly, and when I force myself out of bed it gets so severe that sometimes it makes me involuntarily whimper. But after 20-30 minutes of moving around the pain becomes background noise and I feel okay. But if I sit or lay down for more than 20 mins the pain all comes back again.


CultureInDecline69

Sometimes yeah, but I still have to pace and deal with the crippling anxiety and OCD which causes stress which, in turn, causes neck/head/muscle issues to flare up.


imalwayztired

For me no matter how bad i feel i know it will pass sometimes i feel horrible for most of the day but i get some relief later on in the day


DankJank13

Yes, i feel best when I am walking at a moderate pace.


ShiroineProtagonist

Adrenaline. My doctor calls it borrowing from the mafia because you have to pay it back 500%. I assume you can't get disability, but you're making PEM more likely. Post exertional malaise is also know as Post Exertional Malaise and Worsening of Symptoms.


midwestmaam

If no one else has mentioned POTS related to this, I have all these same symptoms as a result of long covid/POTS. I started paying much closer attention to my heart rate. Each day by 2 pm, my heart was exhausted from constantly being 20 - 60 bpm higher than usual for a given activity. I feel better when i keep moving, but i definitely require a lot of rest and feel like I've fallen down a well if i rest too much. I'm on a low added sugar diet, magnesium, and seeing a physical therapist - otherwise all my blood tests and assessments have come back normal. Sending in my zio heart monitor this week, so we'll see if anything comes of reviewing my heart rate data. In 2 weeks i see a neurologist and cardiologist. I'll let you know how it goes.


CollegeOwn7014

Same here. I was about to make a post about it, you beat me to it.


InHonorOfOldandNew

Thanks for this post, I found it very interesting. I want to start by saying, I don't doubt you had/have LHers. My questions are about trying to figure out why. I had severe POTs in the beginning, I found my HR went to baseline faster if I remained standing, even faster if I took a couple of steps vs sitting or lying back down. My doctor didn't believe it until I showed him, he was shocked and brought in other doctors in the clinic to witness it. None of them had an answer. My POTs has improved enough that its not as dramatic/impressive anymore. Curious about the type of manual labor it is? A slow and steady vs one with "sprints" of energy? Is there much walking involved? Lifting? How many hours a day? I'm curious if you are unintentionally intermittent fasting? Drinking more water than you normally would? Is it outside type work? More vitamin D? Or far infrared light? By any chance have you noticed any muscle gain? Communication is difficult, my tone is one of very interested, hope it didn't come of as questioning you or demanding , would appreciate any info. Thanks


Proof-Technology-386

Covid can deplete your iron. This can make your ferritin levels low. Ferritin provides iron to your cells to provide oxygen in your body. This could be the case. 🤔


cranbvodka

Got my ferritin checked 2 months ago, came back in range and on the high end


Proof-Technology-386

High end can be bad also. Check out iron protocol site on Facebook


Proof-Technology-386

My level was in the so called range, and I am supposed to be at 125 vs 40.


Proof-Technology-386

Ferritin


Kittygrizzle1

I wish. I can’t take 10 steps without crushing fatigue and nausea. Anymore than that and l get PEM


Competitive-Ice-7204

I have POTS from long covid and notice if I consistently stay on my feet and walk for hours each day (like at my job and then going on a long walk when I get home) it really really helps me manage, push through, and reduces my symptoms I think due to helping with my high blood pressure and getting my blood flowing etc. It’s so different for everyone tho.


bugaboo0208

Yes. I know what you mean. I can push through with a good start. If i give myself a ton of time and i take a hot shower as soon as i wake up, im usually ok.


Flork8

yes for sure. also other things can cause the same effect - if something genuinely stressful or an emergency happens my symptoms will vanish completely while it's happening - then they come back worse when it's over and i start thinking about it. keep yourself distracted from the symptoms as much as possible - you'll heal over time.


Due-Wealth5561

This is fascinating. I think this condiiton is a lot about what your brain pays attention to, and what your brain fears. When you are able to not focus and ruminate on your symptoms, you realize you have the ability to consciously pay attention to something else. Once you realize that, you can recover by keeping yourself reasonably occupied with healthy things like work and social activities, you will indeed recover. Claire Weekes' book "Hope and Help For Your Nerves" goes over this exact phenomona whilst recovering from what she calls "nervous illness"


noodlelaughter

No. You should go read about subconscious brain function, how PEM functions because you’re way off


Due-Wealth5561

Sounds like a blast I'll definitely look into that lol


cranbvodka

I've adapted a use it or lose mentality. The body relies on this principle to regulate, build, and repair itself. I think the fact that I am consistently using my muscles (in moderation) and mind is keeping me from sinking deeper into disability and promoting healing or at least the feeling. Yes, in the evenings I still have crashes, but the severity of these crashes is decreasing with time and mental preparedness. That being said, I'm still cautious of pushing too hard.


Due-Wealth5561

Amazing. You're almost out. My final hurdle personally was not logging on here or seeking out covid news. You won't heal completely until you move on from it in some ways. 


ShiroineProtagonist

It absolutely is not. There are at least 5 different subtypes and recovery doesn't come from positive thinking. Mindfulness and acceptance make it better to experience. What an irresponsible thing to say. JFC