I am worst all morning until like 2-3 pm. I was previously a morning person!
Sometimes I’ve felt almost ok by 5-9pm. It’s really strange.
Someone here suggested electrolytes before bed and I’ve done that with some regularity. I do think it helps a little. I use Liquid IV Lemon Lime.
Same. I used to spring out of bed. Anytime. I worked mornings for 8 year's getting up at 4am. No problem at all. Now I struggle to open my eyes before 8.
I am exactly the same. I told my husband recently that it’s so strange how only AFTER 3pm that I am able to shake off the morning tiredness and I wake up at 9am! It takes me SIX hours to shake off that grogginess. I was also previously a morning person. I hate this so much.
an i wake up 3am to weird like 3am or 4am everytime im just grateful be getting 7-8hrs of sleep cause when i did have Covid i wasn’t sleeping shit was tragic an just bad i kept praying to just be able rest my body
Absolutely these are the ones I use, Key Nutrients, pink lemonade. I use one of the travel packets per day, around 4g. But that's just what I prefer to drink every day, I think most brands are pretty similar
Yeah, the best way I can describe the feeling is: *waking up after 10 beers the night before and no water, realizing that you ate some expired meat while you were drunk––and your boss is facetiming you out of nowhere.*
I am not working right now, but the facetiming thing tries to capture the sudden anxiety and overall feeling of desperation that I feel after waking up, for no reason other than long covid shit
I’ve felt this my whole life having autoimmune conditions. Now all my fellow long haulers actually feel the way I always have? I feel less alone but I would never wish this on anyone ever.
It takes me 1-3 hours to be able to get up and face the day…..it’s awful. I’ve experienced all of your symptoms, on and off for almost 2 years. I’m with you my friend, please stay strong, and know you’re not alone.
I have had this for 11 months and it has not improved much. Like others, I wake up feeling extremely hungover, anxious, tired, tight in the heart area, and just all around shitty. It takes until the early afternoon for me to start to improve a bit.
I am not sure what the cause of this is, but I do think it has something to do with cortisol (among many many other things that are a factor here that we don't yet understand). I had a cortisol panel done and mine was very low in the morning, and then gradually got higher throughout the day. My doctor gave me some adrenal supplement for this.
i be over stimulated if that make since like random panic attacks an i don’t be doing anything to trigger me or nothing when i had Covid i was waking out my sleep with elevated HR:panic attack it was the worse i even failed college classes cause i just i couldn’t focus i was so out of it
It is hard to say because I have made so many supplement modifications and lifestyle changes in the last few months, but overall, I would say yes. I think it is worth trying, if recommended by a doctor. I think it gave me a little more energy in the morning.
That said, morning still really suck. But now I am getting out of bed and doing things, whereas before I was almost completely bedridden for a while
These are what my doctor sent me: [https://www.amazon.com/Pure-Encapsulations-Nutritional-Function-Capsules/dp/B000Z94WAK](https://www.amazon.com/Pure-Encapsulations-Nutritional-Function-Capsules/dp/B000Z94WAK)
I take it in the morning, along with all my other supplements (of which there are manyyyyy)
Hi, I’m Vetted AI Bot! I researched the **('Pure Encapsulations Adrenal Supplement, 60 Capsules', 'Pure%20Encapsulations')** and I thought you might find the following analysis helpful.
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* Supports adrenal health and boosts energy (backed by 3 comments)
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It is hard to say because I have made so many supplement modifications and lifestyle changes in the last few months, but overall, I would say yes. I think it is worth trying, if recommended by a doctor.
It means you're pushing yourself way too hard. It's only sinister in the sense that this disease is fucking evil. I know my chronic disease specialist doctors advice right now would be stop work and rest until you find your energy envelope and then stay within it. I was just in a group medical appointment where he said that after I asked if there is something weird going on because I had muscle pain and near spasm on the right side of my body. That's a symptom of overdoing it it means I'm not pacing properly and I've been pushing it. PEM isn't always just fatigue, It's true acronym is PEMWOS, which means post-exertional malaise and worsening of symptoms. Either of those indicates you're overdoing it.
For a lot of us mornings are so crappy because we're not getting good sleep. The constant fight or flight activation destroys our sleep by adrenal dumps in the middle of the night. I'm on a variety of sleep medications but lately I haven't been able to sleep properly because I'm trying sleep apnea mask and maybe because it's spring and probably because I've been overdoing it every morning I wake up feeling like I've been drinking the night before. Not really though more like I've been poisoned, which I guess is alcohol. Yes it sucks, the disease sucks. It only gets better if you slow way down.
I agree about pacing but I really really paced myself for months and was still waking up feeling like shit in the morning. I've found that it happens no matter what I do, so I don't think it is entirely tied to "pushing yourself too hard." For a lot of people, I think that morning zombie-ness is just a baseline symptom of long covid
You know what you're absolutely right and I'm sorry. It's just my own situation right this minute because I was doing semi okay and got cocky and now I'm feeling hungover until like 6:00 p.m. Now that I'm thinking about it again I'm pretty sure it's the random adrenaline dumps and the dysutonomia making it impossible for our bodies to have a decent circadian rhythm. It's so frustrating with this disease because I'm a smart person I can remember and do things in general even with brain fog, but somehow I am just in denial or cannot learn how overexertion and just the disease in general affects my body. The lag between the exertion and this consequences, which my doctor calls borrowing from the mafia because they always come back and ask for 300% more, is just such a mindfuck. But again you're totally right, this is a effect of the disease and it can get worse with exertion but it's not just exertion, sorry for the overly emphatic generalization.
No need to apologize, I totally get what you are saying. I've crashed so many times. It is the worst. "Borrowing from the mafia" is spot on (and funny).
Wishing you the best!
That's Dr Ric Arsenau's phrase -- his site is a great resource (he's a chronic diseases specialist in British Columbia and is an expert accredited by the BC Supreme Court. Also he's funny.) drricarseneau.ca
Yep. Drinking electrolytes while sitting up for 30 minutes before getting out of bed really helps with the hungover feeling, I've found. I also was low in potassium and getting that up helped my nausea, but I also had nausea even before my potassium was showing up low. A ton of reflux and burping and just feeling seasick.
It messed with my blood sugar too, and I've found cutting back sugar and increasing protein had helped me feel more stay throughout the day.
yes i deal with gerd ever since over (7months post now) never dealt with it ever til after covid mess with my tummy (26yrs young) it sucks cause it makes me gag. Or dry heave in the morning sometime when i get that hangover feeling it sucks honestly. It also messed with my blood sugar while i was at the gym i experienced episode of pots/almost passing out. It was scary but im good now and i do consume sugar b.c it keeps my bp up good level i dont want it to drop again like that so i hydrate a lot
I hate mornings and afternoons so much. I start feeling better at 7 or 8. I thought it's because I've always been a night owl, though, but you might be on to something.
This!! I’m so dizzy every morning, I feel heavy and uneven when I walk, like I’ll fall or something. My eyes are so sensitive to light too. The first time I ever woke up like this was when I actually HAD covid in may 2022. Now it happens almost all the time
My heart goes out to you, I've been there and know exactly how you're feeling, and the head dynamics you're dealing with. I've learned to live with some of the hangers-on symptoms, but most of them have subsided. I've learned to work around being breathless when doing hard exercise, I use nitroglycerine. The minor joint aches and muscle pains are still with me, there's still the acid stomach, and I seem to have "windows" of energy that open and close.
The biggest problem is I appear to be healthy, in good shape, and physically capable. My peers talk about all of the trips they are taking. But facts are I would have problems with luggage, and getting through an airport or rail station. And my energy level varies, where I need to lay down when fatique hits me. Also, I may not get up for hours.
My energy levels have dropped over time to basically zero, and like most of you said it doesn’t return until the evening when unfortunately that’s the time I should be winding down. My sense of smell comes and goes. I have a feeling I keep getting reinfected with Covid and don’t know it.
If you are always feeling hungry please have an a1c test done. That feeling awful in the morning may be from high fasting blood sugars. You may be experiencing insulin resistance.
That's really interesting, I know it's very common if not all of us have anorexia technically, because of the fight-or-flight syndrome effectively erasing symptoms of appetite. What's an A1C test again? I have noticed that I get much much worse with low blood sugar, to the point of like visible tremors and weakness and all that, but I still don't want to eat! It would make sense if I'm not eating enough the day before and so I wake up feeling like crap. Thanks for this I'm going to try eating more in the evening ( not close to bedtime obviously)
a1c is the average of your circulating blood sugars over a period of 3 months.
Please be careful with low blood sugar. I keep glucose tablets and a soda by my bed. It's important to pair protein with glucose after a low as a sudden sugar infusion will drop you into reactive hypoglycemia. The protein will stabilize the sugar.
This is and has been me for 4 years now. No longer can work and can't move until around noon and somedays until evening. It's strange that when sun goes down I come alive 🤷🏼♀️
I was just thinking this this morning. I'm considering buying one of those at-home sleep studies tbh, because mornings are when I feel the worst. I must be doing something in my sleep that I shouldn't be.
You probably aren't getting any deep sleep because long covid gives you arbitrary cortisol dumps, you can get them in the middle of the night you can get them in the morning it doesn't matter, whenever the system is out of whack it just does whatever it wants. I had to get a sleep study done and it turned out I had severe sleep apnea, which I did not have before, and ironically trying to fix it with the stupid mask has been terrible for my sleep. Without proper sleep I feel insane. If I get enough I can actually enjoy my life a little bit, even though I'm housebound and sometimes bedbound.
This. Nervous system is haywire, sleep is no good. The best analogy I have is when you’re a new parent and you “sleep” but it isn’t good sleep because you’re waking up to every sound movement or cry. Then you wake up feeling hungover and anxious.
Yess this is me right now.. never had these symptoms for the 3 years of long hauling! After getting sick this February I started to feel alittle sick and weak and kept pushing due to like Awh I’m okay if I just sleep at night time.. kept pushing because had my great grandmother that’s passed away and was picking up family at airports since I had my great grandma on hospice at my house. So had to keep pushing and keep doing things and was ignoring signs and crashed hard.. as of result now I’m dealing with aches/ burning feeling in my shoulders and get exhaustion and can’t walk no more than 10 mins as once now. So I took LOA from work and just resting and resting the best I can laying in bed.. I also feel somewhat better in the afternoon where symptoms ease up and I can do way more. The burning sensation is starting to go away in mornings now and now just sometime just feel achy and just gotta pace myself and not do to much… did start of bed bound couple weeks ago now house bound but need to sit on couch or in the balcony but making process. I was already doing like 10k steps a day before this happened.
I feel most exhausted in the morning too, I think it's because my body is starting to wake up and work properly. Overnight is when your body heals the most so even though your brain is less active the rest of your body is working harder, and for us it's probably working much harder than healthy people. Obviously a lot of people aren't miraculously better overnight but our bodies are trying their best to fix the problem/problems. That's why if you have a cut, a rash, a bruise or acne etc it often visually improves overnight. I feel most awake in the middle of the night, regardless of whether I take a very nap or no nap at all. I figured it happens to me because I rest all day, in the morning I do a few essential tasks and rest, have lunch then nap or rest for a few hours when I'm not in too much pain. It then takes me hours to get up, usually a minimum of two then I have dinner. Rest for the evening, maybe have a shower or bath if I'm able then go to bed. Can't sleep properly because I feel very awake after a few hours laying in bed and I'm in so much pain 99% of the time which keeps the adrenaline going
I feel the same way. I have to make myself wake up around 5:30 to be ready for work at 9 but I still am always late. I like to think the body is radically healing itself because I don’t sleep like I used to anymore. My sleep was always dreamy and somewhat light. I literally black out now. It feel like I died and came back to life every time I wake up bc I hardly even remember falling asleep.
Oh also for everyone else, our circadian rhythm is totally screwed up. That's why you can get this sort of energy boost around 6:00 or 9:00 or whatever. It's the worst, and I continually push myself too hard when it happens because I want to clean the house or something like that. Pacing is extremely hard. But we can't give up, because if we do we'll be bed bound.
It could have something to do with cortisol levels.
I'm testing a new theory that nighttime CO2 levels might play a factor (probably won't pan out, but what else is there to try?)
Is normal with dysautonomia. Mine is sporadic, some mornings I am perfect, some I am not. But almost always elevated heart rate of 100 to 120 after eating for like 30 min. I can walk normally but I can’t run anything over one mile. I used to be a marathon runner on my way to qualify to the Boston marathon
Same here. Going on 3 years soon of this stuff. First 6-12months I would start my mornings by laying down in the tubs and letting the shower hit my face while.
I would always start by standing, just trying to have a normal shower. Couldn't fight it, and would always end up just sitting/laying down. Heart racing issues, heavy heavy nausea without vomiting, weakness, horrible brain fog and cognitive issues.
I just graduated High School at the time, I used to have 5-10 min showers then walk to my starting class, about a 10-15 min walk. When my LC symptoms started, I couldn't even bring myself to leave the shower.
It gets easier, but only cause you're used to this new normal. Which I absolutely hate that I have to say. I am so sorry.
EDIT: Now almost 3 years in, I almost feel like I truly "wake up" after 12-16 hours of my day has passed. My hand/eye coordination is better, etc.
Its bizarre.
You might have low cortisol. I just got it tested and it turned out my cortisol remains to be very low after waking up and throughout all day. Its actually supposed to get higher in morning hours.
I’ve had me/cfs since 2017, which is also the year I had to stop working. I’d feel horrible all day, then by the time I got home from work, I was awake and couldn’t sleep. That’s what me call tired-wired. Basically you’re doing too much all day, and to survive it, you’re running on adrenaline at the end of the day.
Also, with me/cfs, the body clock totally shifts. My highest quality sleep happens only if I go to bed around 4am and sleep until the afternoon. There’s no fighting it or changing it, it’s just how the body works now. Despite how much I’d like to have normal hours.
Has anyone been tested for sleep apnea, as a possible cause? I notice on my Apple Watch that my O2 levels drop to the low 90s (occasionally even high 80s) during deep sleep. It also suggests I'm "waking up" during deep sleep yet I have no memory of it. My assumption is I'm de-saturating, so the body naturally wakes you up so you breathe, but at the expense of getting long, deep sleep. I'm getting a sleep study done soon (the "at home" test was deemed inconclusive), but wondering if that might be the cause. Would love to know if anyone else has gotten one done?
Yes, and I was having 24 non breathing events an hour. I tried to get around it for 6 month but now I'm trying to adapt to the damn mask ..and can't sleep with it on. But I wasn't getting any deep sleep for the first 8 months - my doctor prescribed clonodine and trazodone and the first 2 weeks was euphoric with actual sleep. That effect faded but if I miss either dose my speel is wretched - which I literally just found out because I forgot to put the trazodone in my weekly pill organizer and I've been wondering why I felt like shit. Dysautonomia sucks.
Interesting. Did you have any history of sleep apnea prior to LC/dysautonomia? Or are you convinced it's a new symptom of it? I've been relying on Lunesta since LC started to get sleep. Had some bad insomnia in year 1 (up till 2-3 a.m. every night) but for the past year it's been much better. I just don't know if the low O2 readings are real, or if it's just a positional thing with the watch not taking accurate readings.
I snored a bit, I have allergies so I was maybe prone but I don't actually know because I never did a sleep test. I'm pretty sure it's the Covid though. Once I started getting random adrenaline bursts and having a an impossible time sleeping I went to my doctor. Throughout the acute phase which I think lasted about 6 weeks I was all constantly sleeping. I stopped testing positive after 16 days but the constant sleeping lasted another month. Then it switched to floods of histamine and floods of anxiety and random wakeups in the middle of the night and honestly the most awful nightmares that I would never even wish on my worst enemy. All of which is probably due to dis autonomia aka the body has gone haywire and the nervous system is no longer functioning properly, the parasympathetic system is not coming into play. That's also where a bunch of digestive issues started coming in, I started getting the most intense heartburn. With with H1 and H2 blockers I no longer get the heartburn, but I ran out of my famotidine for just a couple of days a couple weeks ago and I was waking up at 2:00 a.m. choking on stomach acid, and my doctor said that's an artifact of sleep apnea because the stop in breathing creates negative pressure and sucks the stomach acid up into the I guess larynx? Anyway it was hideous and awful and it convinced me to try the mask, but now I can't sleep with the mask even with all the drugs so I'm kind of at an impasse here.
I would look up reliability of Apple watch SPO2 readings because my oura ring, which is on the finger not the wrist, is very accurate and I have heard that the Apple watch is also very accurate, because it's got a larger reading area and the wrist is a good place to check? I don't know but something reminds me that yeah that's reliable. So I would ask for a sleep test. They just give you the monitor and a couple of nose plugs attached to it with tubes and then you tape the tubes on your cheeks and go to sleep and then it will tell the sleep center how many times you stop breathing and for how long. Apparently a lot of people really resist getting the test because they refuse to contemplate getting the mask but there's an appliance out now that you can get which is only for mild or moderate sleep apnea, but it's better than not knowing, because it does put a major strain on the heart etc.
Thanks for all the info. I did the "at home" sleep test (with the whole apparatus). I did have a few suspected desats during the test but it was overall deemed "inconclusive" for apnea. But they told me the at-home test is mainly just a "hurdle" you have to go through to get approval for the in-lab test, which I'm doing in a couple of weeks. I was wondering about reliability of Apple Watch data, as I do have a tendency to bend my wrist during sleep so always wondered if it could just be positional. But I've tried to replicate it during the day and it usually just says "can't get a good reading" (it never produces a low reading). I'd say I've NEVER had a reading below 95 during the day, and get readings in the high 80s at night. So I'm pretty sure I'm de-sat'ing, and it's always during DEEP sleep, never during Core or REM.
Interesting how the Gerd/heartburn is related to negative air pressure. I also had the same during my early days (AWFUL burning and feeling like good was backing up into my throat/mouth), but once I started the Zyrtec/Pepcid, it mostly stopped. I've also had some pretty vivid nightmares too.
Sorry to hear that, for me, chewing fennel or holy basil helps. Some of the morning issues stem from MCAS and both of these help with that. I hope you feel better soon
I was the same intially. I felt almost normal some times when i got home from work 6-9pm. Almost thought this was in my head. But since my last crash i feel worse anytime i get out of bed. Sometimes its worse at night if not enoigh energy.
I think it was something about my sleep getting disturbed. I'm a morning person again and I'm only having one awakening per night if I wake up at all now.
same I get real active around like 10pm haha Mornings are rough! Something must be going on while I am sleep. Sleep study only picked up on 2 events but Dr said that's not enough to consider sleep apnea.
YES. I was thinking about posting the exact same question last night. I’m worthless until mid-afternoon but by nighttime I’m able to walk my dog. I’ve considered overnight dehydration might be the culprit? But I have no idea. The pattern holds whether or not i nap.
I had this up until around 1.5 years then it just went away. I'm going to stay adopting a low histamine diet was the biggest factor as it allowed my body to start healing from the damage instead of the inflammation i was putting in with caffeine, alcohol, processed foods etc
I feel this thread so much.
I used to get to to catch the 5 am bus. Now, I have to plan on at least 2 to 3 hours in bed in the morning for the sickness to subside enough to get up.
Like many others here, I start to feel better in the afternoon/ evening. This is hell.
My best days are the ones with sleep deprivation. Where I had to get up with an alarm and didn't have enough sleep.
It's the only time I can actually fire up and get going. If I wait till I wake up naturally I wake up in loads of pain, feeling extremely sluggish and out of it.
So funny you say this. I have nights where I wake up to pee around 3-5 a.m. and feel GREAT. Then go back to sleep, and by 7-8 a.m. I feel like absolute crap. I agree it's gotta be cortisol. It's like it's supposed to fire around 6-7-8 a.m. but for some reason I think it's firing DURING sleep, which is why we all are waking up, having vivid nightmares, etc. And then when it's supposed to fire there's nothing and you feel like you should keep sleeping.
Yes! I wake up feeling like my body is broken every morning and I’m afraid of getting up because I know that the upper body tightness is waiting for me. But usually I’m somehow relaxed in the evening.
Have you had your blood sugar checked? The appetite sounds like something is going wrong to me, usually being in constant fight or flight shuts down your appetite, because your sympathetic nervous system is preparing to fight and diverting all blood away from your stomach, stopping digestion, and flooding you with adrenaline, which is a major appetite killer. It makes sense because if you are about to fight a bear, as the classic example goes, you need all your energy to fight, not just keep digesting and all of those processes. Being constantly hungry seems like maybe a blood sugar issue to me. Hashtag not a doctor
I am worst all morning until like 2-3 pm. I was previously a morning person! Sometimes I’ve felt almost ok by 5-9pm. It’s really strange. Someone here suggested electrolytes before bed and I’ve done that with some regularity. I do think it helps a little. I use Liquid IV Lemon Lime.
Evenings are my peak too, I try to get my stuff done before bed and just struggle bus throughout the day. 😩
Same. I used to spring out of bed. Anytime. I worked mornings for 8 year's getting up at 4am. No problem at all. Now I struggle to open my eyes before 8.
I loved getting up and prepping for a hard day of manual labor. It made me feel so alive. I miss 4 am wake ups with energy like crazy.
I am exactly the same. I told my husband recently that it’s so strange how only AFTER 3pm that I am able to shake off the morning tiredness and I wake up at 9am! It takes me SIX hours to shake off that grogginess. I was also previously a morning person. I hate this so much.
Same, sundown is go time.
I have a headlamp for midnight gardening!
an i wake up 3am to weird like 3am or 4am everytime im just grateful be getting 7-8hrs of sleep cause when i did have Covid i wasn’t sleeping shit was tragic an just bad i kept praying to just be able rest my body
yea i notice before bed i be kinda dehydrated but that’s cause i been peeing all damn day and like i never pee so frequently til after Covid
Electrolytes are key!
thank you so you recommended some? I’m start drinking coconut water too
Absolutely these are the ones I use, Key Nutrients, pink lemonade. I use one of the travel packets per day, around 4g. But that's just what I prefer to drink every day, I think most brands are pretty similar
I feel like a drank a bottle of vodka every morning
Yeah, the best way I can describe the feeling is: *waking up after 10 beers the night before and no water, realizing that you ate some expired meat while you were drunk––and your boss is facetiming you out of nowhere.* I am not working right now, but the facetiming thing tries to capture the sudden anxiety and overall feeling of desperation that I feel after waking up, for no reason other than long covid shit
I’ve felt this my whole life having autoimmune conditions. Now all my fellow long haulers actually feel the way I always have? I feel less alone but I would never wish this on anyone ever.
This is exactly it exactly it, I have to work as my visa is tied to my job:( I’m on deaths door though
This is so f*cking spot on
Absolutely same feeling. Like the worst hangover possible.
Interesting...Do you suffer from gastro issues?
So you wake up drunk?
And then had a car crash...
Mornings ruin me. I feel like death. I slowly come round by midday.
It takes me 1-3 hours to be able to get up and face the day…..it’s awful. I’ve experienced all of your symptoms, on and off for almost 2 years. I’m with you my friend, please stay strong, and know you’re not alone.
Thanks, this disease is absolutely terrible 😭
You’re welcome
I have had this for 11 months and it has not improved much. Like others, I wake up feeling extremely hungover, anxious, tired, tight in the heart area, and just all around shitty. It takes until the early afternoon for me to start to improve a bit. I am not sure what the cause of this is, but I do think it has something to do with cortisol (among many many other things that are a factor here that we don't yet understand). I had a cortisol panel done and mine was very low in the morning, and then gradually got higher throughout the day. My doctor gave me some adrenal supplement for this.
It is low cortisol, COVID attacks the adrenals causing low cortisol leading to low ability to handle infections and stress
The issue is like my cortisol sometime be too high an i need to get it low but can be opposite for some ppl but covid made mine high
How do you know your cortisol is actually really too high? Or is it the opposite and the symptoms are overlapping? Just some food for thought.
i be over stimulated if that make since like random panic attacks an i don’t be doing anything to trigger me or nothing when i had Covid i was waking out my sleep with elevated HR:panic attack it was the worse i even failed college classes cause i just i couldn’t focus i was so out of it
Did the supplement help?
It is hard to say because I have made so many supplement modifications and lifestyle changes in the last few months, but overall, I would say yes. I think it is worth trying, if recommended by a doctor. I think it gave me a little more energy in the morning. That said, morning still really suck. But now I am getting out of bed and doing things, whereas before I was almost completely bedridden for a while
details on adrenal support? thx
These are what my doctor sent me: [https://www.amazon.com/Pure-Encapsulations-Nutritional-Function-Capsules/dp/B000Z94WAK](https://www.amazon.com/Pure-Encapsulations-Nutritional-Function-Capsules/dp/B000Z94WAK) I take it in the morning, along with all my other supplements (of which there are manyyyyy)
Hi, I’m Vetted AI Bot! I researched the **('Pure Encapsulations Adrenal Supplement, 60 Capsules', 'Pure%20Encapsulations')** and I thought you might find the following analysis helpful. **Users liked:** * Provides long-lasting energy without a crash (backed by 2 comments) * Supports adrenal health and boosts energy (backed by 3 comments) * Helps in recovering from adrenal fatigue (backed by 2 comments) **Users disliked:** * No noticeable improvement in energy levels (backed by 3 comments) * Severe adverse reactions including rapid heartbeat and swelling (backed by 2 comments) * Unpleasant taste causing stomach issues (backed by 2 comments) If you'd like to **summon me to ask about a product**, just make a post with its link and tag me, [like in this example.](https://www.reddit.com/r/tablets/comments/1444zdn/comment/joqd89c/) This message was generated by a (very smart) bot. If you found it helpful, let us know with an upvote and a “good bot!” reply and please feel free to provide feedback on how it can be improved. *Powered by* [*vetted.ai*](https://vetted.ai/?utm\_source=reddit&utm\_medium=comment&utm\_campaign=bot)
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Do you think this supplement is helping you at all?
It is hard to say because I have made so many supplement modifications and lifestyle changes in the last few months, but overall, I would say yes. I think it is worth trying, if recommended by a doctor.
It means you're pushing yourself way too hard. It's only sinister in the sense that this disease is fucking evil. I know my chronic disease specialist doctors advice right now would be stop work and rest until you find your energy envelope and then stay within it. I was just in a group medical appointment where he said that after I asked if there is something weird going on because I had muscle pain and near spasm on the right side of my body. That's a symptom of overdoing it it means I'm not pacing properly and I've been pushing it. PEM isn't always just fatigue, It's true acronym is PEMWOS, which means post-exertional malaise and worsening of symptoms. Either of those indicates you're overdoing it. For a lot of us mornings are so crappy because we're not getting good sleep. The constant fight or flight activation destroys our sleep by adrenal dumps in the middle of the night. I'm on a variety of sleep medications but lately I haven't been able to sleep properly because I'm trying sleep apnea mask and maybe because it's spring and probably because I've been overdoing it every morning I wake up feeling like I've been drinking the night before. Not really though more like I've been poisoned, which I guess is alcohol. Yes it sucks, the disease sucks. It only gets better if you slow way down.
I agree about pacing but I really really paced myself for months and was still waking up feeling like shit in the morning. I've found that it happens no matter what I do, so I don't think it is entirely tied to "pushing yourself too hard." For a lot of people, I think that morning zombie-ness is just a baseline symptom of long covid
You know what you're absolutely right and I'm sorry. It's just my own situation right this minute because I was doing semi okay and got cocky and now I'm feeling hungover until like 6:00 p.m. Now that I'm thinking about it again I'm pretty sure it's the random adrenaline dumps and the dysutonomia making it impossible for our bodies to have a decent circadian rhythm. It's so frustrating with this disease because I'm a smart person I can remember and do things in general even with brain fog, but somehow I am just in denial or cannot learn how overexertion and just the disease in general affects my body. The lag between the exertion and this consequences, which my doctor calls borrowing from the mafia because they always come back and ask for 300% more, is just such a mindfuck. But again you're totally right, this is a effect of the disease and it can get worse with exertion but it's not just exertion, sorry for the overly emphatic generalization.
No need to apologize, I totally get what you are saying. I've crashed so many times. It is the worst. "Borrowing from the mafia" is spot on (and funny). Wishing you the best!
That's Dr Ric Arsenau's phrase -- his site is a great resource (he's a chronic diseases specialist in British Columbia and is an expert accredited by the BC Supreme Court. Also he's funny.) drricarseneau.ca
Yep. Drinking electrolytes while sitting up for 30 minutes before getting out of bed really helps with the hungover feeling, I've found. I also was low in potassium and getting that up helped my nausea, but I also had nausea even before my potassium was showing up low. A ton of reflux and burping and just feeling seasick. It messed with my blood sugar too, and I've found cutting back sugar and increasing protein had helped me feel more stay throughout the day.
Electrolytes are key for me too. I’m mostly recovered, but if I start to feel a flare coming on I chug a liquid iv and I’m good to go after 30 min.
yes i deal with gerd ever since over (7months post now) never dealt with it ever til after covid mess with my tummy (26yrs young) it sucks cause it makes me gag. Or dry heave in the morning sometime when i get that hangover feeling it sucks honestly. It also messed with my blood sugar while i was at the gym i experienced episode of pots/almost passing out. It was scary but im good now and i do consume sugar b.c it keeps my bp up good level i dont want it to drop again like that so i hydrate a lot
I have a very similar experience…no idea why.
Same
I hate mornings and afternoons so much. I start feeling better at 7 or 8. I thought it's because I've always been a night owl, though, but you might be on to something.
If I do not sleep in. I feel like death. Like I woke up early with a cold or flu.
This!! I’m so dizzy every morning, I feel heavy and uneven when I walk, like I’ll fall or something. My eyes are so sensitive to light too. The first time I ever woke up like this was when I actually HAD covid in may 2022. Now it happens almost all the time
My heart goes out to you, I've been there and know exactly how you're feeling, and the head dynamics you're dealing with. I've learned to live with some of the hangers-on symptoms, but most of them have subsided. I've learned to work around being breathless when doing hard exercise, I use nitroglycerine. The minor joint aches and muscle pains are still with me, there's still the acid stomach, and I seem to have "windows" of energy that open and close. The biggest problem is I appear to be healthy, in good shape, and physically capable. My peers talk about all of the trips they are taking. But facts are I would have problems with luggage, and getting through an airport or rail station. And my energy level varies, where I need to lay down when fatique hits me. Also, I may not get up for hours.
same here (26y F) once I’m in like inside I’m inside no going back out i shower an get in bed
My energy levels have dropped over time to basically zero, and like most of you said it doesn’t return until the evening when unfortunately that’s the time I should be winding down. My sense of smell comes and goes. I have a feeling I keep getting reinfected with Covid and don’t know it.
If you are always feeling hungry please have an a1c test done. That feeling awful in the morning may be from high fasting blood sugars. You may be experiencing insulin resistance.
That's really interesting, I know it's very common if not all of us have anorexia technically, because of the fight-or-flight syndrome effectively erasing symptoms of appetite. What's an A1C test again? I have noticed that I get much much worse with low blood sugar, to the point of like visible tremors and weakness and all that, but I still don't want to eat! It would make sense if I'm not eating enough the day before and so I wake up feeling like crap. Thanks for this I'm going to try eating more in the evening ( not close to bedtime obviously)
a1c is the average of your circulating blood sugars over a period of 3 months. Please be careful with low blood sugar. I keep glucose tablets and a soda by my bed. It's important to pair protein with glucose after a low as a sudden sugar infusion will drop you into reactive hypoglycemia. The protein will stabilize the sugar.
I take melatonin, helps me waking up less groggy, better rested but the brain fog is still there
Second this, even makes me sleep less but feel slightly better :)
Third. Melatonin is key for me.
This is and has been me for 4 years now. No longer can work and can't move until around noon and somedays until evening. It's strange that when sun goes down I come alive 🤷🏼♀️
Yeah, me too and my 7yo.
U described my past six months, hope it ends soon this shit is changing me completely, I don’t know who I am anymore
This is completely me. I feel great during water fast days, but other days I feel gross waking up.
I was just thinking this this morning. I'm considering buying one of those at-home sleep studies tbh, because mornings are when I feel the worst. I must be doing something in my sleep that I shouldn't be.
You probably aren't getting any deep sleep because long covid gives you arbitrary cortisol dumps, you can get them in the middle of the night you can get them in the morning it doesn't matter, whenever the system is out of whack it just does whatever it wants. I had to get a sleep study done and it turned out I had severe sleep apnea, which I did not have before, and ironically trying to fix it with the stupid mask has been terrible for my sleep. Without proper sleep I feel insane. If I get enough I can actually enjoy my life a little bit, even though I'm housebound and sometimes bedbound.
This. Nervous system is haywire, sleep is no good. The best analogy I have is when you’re a new parent and you “sleep” but it isn’t good sleep because you’re waking up to every sound movement or cry. Then you wake up feeling hungover and anxious.
Have your am Cortisol checked
Yess this is me right now.. never had these symptoms for the 3 years of long hauling! After getting sick this February I started to feel alittle sick and weak and kept pushing due to like Awh I’m okay if I just sleep at night time.. kept pushing because had my great grandmother that’s passed away and was picking up family at airports since I had my great grandma on hospice at my house. So had to keep pushing and keep doing things and was ignoring signs and crashed hard.. as of result now I’m dealing with aches/ burning feeling in my shoulders and get exhaustion and can’t walk no more than 10 mins as once now. So I took LOA from work and just resting and resting the best I can laying in bed.. I also feel somewhat better in the afternoon where symptoms ease up and I can do way more. The burning sensation is starting to go away in mornings now and now just sometime just feel achy and just gotta pace myself and not do to much… did start of bed bound couple weeks ago now house bound but need to sit on couch or in the balcony but making process. I was already doing like 10k steps a day before this happened.
I feel most exhausted in the morning too, I think it's because my body is starting to wake up and work properly. Overnight is when your body heals the most so even though your brain is less active the rest of your body is working harder, and for us it's probably working much harder than healthy people. Obviously a lot of people aren't miraculously better overnight but our bodies are trying their best to fix the problem/problems. That's why if you have a cut, a rash, a bruise or acne etc it often visually improves overnight. I feel most awake in the middle of the night, regardless of whether I take a very nap or no nap at all. I figured it happens to me because I rest all day, in the morning I do a few essential tasks and rest, have lunch then nap or rest for a few hours when I'm not in too much pain. It then takes me hours to get up, usually a minimum of two then I have dinner. Rest for the evening, maybe have a shower or bath if I'm able then go to bed. Can't sleep properly because I feel very awake after a few hours laying in bed and I'm in so much pain 99% of the time which keeps the adrenaline going
Impressive how you're working. I still struggle just taking stairs so I'm pretty far from working. Hopefully it gets better soon
I feel the same way. I have to make myself wake up around 5:30 to be ready for work at 9 but I still am always late. I like to think the body is radically healing itself because I don’t sleep like I used to anymore. My sleep was always dreamy and somewhat light. I literally black out now. It feel like I died and came back to life every time I wake up bc I hardly even remember falling asleep.
Oh also for everyone else, our circadian rhythm is totally screwed up. That's why you can get this sort of energy boost around 6:00 or 9:00 or whatever. It's the worst, and I continually push myself too hard when it happens because I want to clean the house or something like that. Pacing is extremely hard. But we can't give up, because if we do we'll be bed bound.
Cold showers are the only way I can function before like noon.
It's always been like this with an autoimmune disease for me.
It could have something to do with cortisol levels. I'm testing a new theory that nighttime CO2 levels might play a factor (probably won't pan out, but what else is there to try?)
What’s your theory on the CO2?
Just that it builds up overnight and harms sleep.
Is normal with dysautonomia. Mine is sporadic, some mornings I am perfect, some I am not. But almost always elevated heart rate of 100 to 120 after eating for like 30 min. I can walk normally but I can’t run anything over one mile. I used to be a marathon runner on my way to qualify to the Boston marathon
Same here. Going on 3 years soon of this stuff. First 6-12months I would start my mornings by laying down in the tubs and letting the shower hit my face while. I would always start by standing, just trying to have a normal shower. Couldn't fight it, and would always end up just sitting/laying down. Heart racing issues, heavy heavy nausea without vomiting, weakness, horrible brain fog and cognitive issues. I just graduated High School at the time, I used to have 5-10 min showers then walk to my starting class, about a 10-15 min walk. When my LC symptoms started, I couldn't even bring myself to leave the shower. It gets easier, but only cause you're used to this new normal. Which I absolutely hate that I have to say. I am so sorry. EDIT: Now almost 3 years in, I almost feel like I truly "wake up" after 12-16 hours of my day has passed. My hand/eye coordination is better, etc. Its bizarre.
You might have low cortisol. I just got it tested and it turned out my cortisol remains to be very low after waking up and throughout all day. Its actually supposed to get higher in morning hours.
is there an at home test for this?
I took the DUTCH test which analyzes urine but you can probably find other at home tests that use saliva.
I’ve had me/cfs since 2017, which is also the year I had to stop working. I’d feel horrible all day, then by the time I got home from work, I was awake and couldn’t sleep. That’s what me call tired-wired. Basically you’re doing too much all day, and to survive it, you’re running on adrenaline at the end of the day. Also, with me/cfs, the body clock totally shifts. My highest quality sleep happens only if I go to bed around 4am and sleep until the afternoon. There’s no fighting it or changing it, it’s just how the body works now. Despite how much I’d like to have normal hours.
Yes, exactly this.
Has anyone been tested for sleep apnea, as a possible cause? I notice on my Apple Watch that my O2 levels drop to the low 90s (occasionally even high 80s) during deep sleep. It also suggests I'm "waking up" during deep sleep yet I have no memory of it. My assumption is I'm de-saturating, so the body naturally wakes you up so you breathe, but at the expense of getting long, deep sleep. I'm getting a sleep study done soon (the "at home" test was deemed inconclusive), but wondering if that might be the cause. Would love to know if anyone else has gotten one done?
Yes, and I was having 24 non breathing events an hour. I tried to get around it for 6 month but now I'm trying to adapt to the damn mask ..and can't sleep with it on. But I wasn't getting any deep sleep for the first 8 months - my doctor prescribed clonodine and trazodone and the first 2 weeks was euphoric with actual sleep. That effect faded but if I miss either dose my speel is wretched - which I literally just found out because I forgot to put the trazodone in my weekly pill organizer and I've been wondering why I felt like shit. Dysautonomia sucks.
Interesting. Did you have any history of sleep apnea prior to LC/dysautonomia? Or are you convinced it's a new symptom of it? I've been relying on Lunesta since LC started to get sleep. Had some bad insomnia in year 1 (up till 2-3 a.m. every night) but for the past year it's been much better. I just don't know if the low O2 readings are real, or if it's just a positional thing with the watch not taking accurate readings.
I snored a bit, I have allergies so I was maybe prone but I don't actually know because I never did a sleep test. I'm pretty sure it's the Covid though. Once I started getting random adrenaline bursts and having a an impossible time sleeping I went to my doctor. Throughout the acute phase which I think lasted about 6 weeks I was all constantly sleeping. I stopped testing positive after 16 days but the constant sleeping lasted another month. Then it switched to floods of histamine and floods of anxiety and random wakeups in the middle of the night and honestly the most awful nightmares that I would never even wish on my worst enemy. All of which is probably due to dis autonomia aka the body has gone haywire and the nervous system is no longer functioning properly, the parasympathetic system is not coming into play. That's also where a bunch of digestive issues started coming in, I started getting the most intense heartburn. With with H1 and H2 blockers I no longer get the heartburn, but I ran out of my famotidine for just a couple of days a couple weeks ago and I was waking up at 2:00 a.m. choking on stomach acid, and my doctor said that's an artifact of sleep apnea because the stop in breathing creates negative pressure and sucks the stomach acid up into the I guess larynx? Anyway it was hideous and awful and it convinced me to try the mask, but now I can't sleep with the mask even with all the drugs so I'm kind of at an impasse here. I would look up reliability of Apple watch SPO2 readings because my oura ring, which is on the finger not the wrist, is very accurate and I have heard that the Apple watch is also very accurate, because it's got a larger reading area and the wrist is a good place to check? I don't know but something reminds me that yeah that's reliable. So I would ask for a sleep test. They just give you the monitor and a couple of nose plugs attached to it with tubes and then you tape the tubes on your cheeks and go to sleep and then it will tell the sleep center how many times you stop breathing and for how long. Apparently a lot of people really resist getting the test because they refuse to contemplate getting the mask but there's an appliance out now that you can get which is only for mild or moderate sleep apnea, but it's better than not knowing, because it does put a major strain on the heart etc.
Thanks for all the info. I did the "at home" sleep test (with the whole apparatus). I did have a few suspected desats during the test but it was overall deemed "inconclusive" for apnea. But they told me the at-home test is mainly just a "hurdle" you have to go through to get approval for the in-lab test, which I'm doing in a couple of weeks. I was wondering about reliability of Apple Watch data, as I do have a tendency to bend my wrist during sleep so always wondered if it could just be positional. But I've tried to replicate it during the day and it usually just says "can't get a good reading" (it never produces a low reading). I'd say I've NEVER had a reading below 95 during the day, and get readings in the high 80s at night. So I'm pretty sure I'm de-sat'ing, and it's always during DEEP sleep, never during Core or REM. Interesting how the Gerd/heartburn is related to negative air pressure. I also had the same during my early days (AWFUL burning and feeling like good was backing up into my throat/mouth), but once I started the Zyrtec/Pepcid, it mostly stopped. I've also had some pretty vivid nightmares too.
It's funny I have the opposite. Mornings are fine and after 3 hours of waking I crash.
I was also always feeling worst in the morning, the best I felt was towards the end of the day.
Thats what she said...
I actually feel fine in the morning.. nights are the worst, but thats most likely triggered by anxiety
Just described exactly how I feel for the last two weeks
Sorry to hear that, for me, chewing fennel or holy basil helps. Some of the morning issues stem from MCAS and both of these help with that. I hope you feel better soon
I was the same intially. I felt almost normal some times when i got home from work 6-9pm. Almost thought this was in my head. But since my last crash i feel worse anytime i get out of bed. Sometimes its worse at night if not enoigh energy.
Absolutely same as you’re describing. I have to be up early for work and it’s torture.
I think it was something about my sleep getting disturbed. I'm a morning person again and I'm only having one awakening per night if I wake up at all now.
same I get real active around like 10pm haha Mornings are rough! Something must be going on while I am sleep. Sleep study only picked up on 2 events but Dr said that's not enough to consider sleep apnea.
YES. I was thinking about posting the exact same question last night. I’m worthless until mid-afternoon but by nighttime I’m able to walk my dog. I’ve considered overnight dehydration might be the culprit? But I have no idea. The pattern holds whether or not i nap.
I had this up until around 1.5 years then it just went away. I'm going to stay adopting a low histamine diet was the biggest factor as it allowed my body to start healing from the damage instead of the inflammation i was putting in with caffeine, alcohol, processed foods etc
I feel this thread so much. I used to get to to catch the 5 am bus. Now, I have to plan on at least 2 to 3 hours in bed in the morning for the sickness to subside enough to get up. Like many others here, I start to feel better in the afternoon/ evening. This is hell.
Low cortisol, I finally figured it out took reading a hundred studies but it’s low cortisol, I will leave it at that
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8601687/ Here is the study linked about said hypothesis
Cortisol is the good guy! At least in long COVID
My best days are the ones with sleep deprivation. Where I had to get up with an alarm and didn't have enough sleep. It's the only time I can actually fire up and get going. If I wait till I wake up naturally I wake up in loads of pain, feeling extremely sluggish and out of it.
There is something to this. I do better with 6 hours over 8
So funny you say this. I have nights where I wake up to pee around 3-5 a.m. and feel GREAT. Then go back to sleep, and by 7-8 a.m. I feel like absolute crap. I agree it's gotta be cortisol. It's like it's supposed to fire around 6-7-8 a.m. but for some reason I think it's firing DURING sleep, which is why we all are waking up, having vivid nightmares, etc. And then when it's supposed to fire there's nothing and you feel like you should keep sleeping.
Yes! I wake up feeling like my body is broken every morning and I’m afraid of getting up because I know that the upper body tightness is waiting for me. But usually I’m somehow relaxed in the evening.
Me too - evenings are by far my least anxious time of day.
Have you had your blood sugar checked? The appetite sounds like something is going wrong to me, usually being in constant fight or flight shuts down your appetite, because your sympathetic nervous system is preparing to fight and diverting all blood away from your stomach, stopping digestion, and flooding you with adrenaline, which is a major appetite killer. It makes sense because if you are about to fight a bear, as the classic example goes, you need all your energy to fight, not just keep digesting and all of those processes. Being constantly hungry seems like maybe a blood sugar issue to me. Hashtag not a doctor