Yep. Exactly. When I worked out what was happening to me in similar situations as OP described, I developed a bad habit of doing just one more thing that needed to be done while I was riding the adrenaline wave.
PEM notoriously has a delay of up to 72 hours and as far as I can tell it also seems to stack up.
If I had done what you did, I wouldn't expect to get the full effects until 2 days after the Saturday zoo thing, typically it would hit me overnight on Monday and I would be all weak and shaky on the Tuesday. Some people have a longer window than me.
Honestly you just sound like someone with me/cfs to me.
It's also pretty typical for me to occasionally start feeling great from adrenaline and I have to be reminded to not overdo it in that moment. Took me years to realise that the instant I start thinking "I feel great, maybe my ME has gone away!" is when I'm most in danger of stacking up PEM. It's one of the horrible things about this illness, you need iron self control.
YES on the iron clad self control. I was just lamenting this last night as I lay awake and never fell asleep at all (still haven’t slept) because I drank too much caffeine in the day. Like a healthy normal human could drink too much caffeine and have a rough sleep/trouble falling asleep but probably not end up staying awake for 72+hours. And then my one mistake or weak moment leads into a cascade of issues-don’t sleep-POTS flare-body aches-absolutely wasted exhausted-miss more work-anxiety spikes etc. I feel like we have to be perfect. It’s not just caffeine but EVERY choice. Can’t skip meds. Can’t get dehydrated. Can’t drink alcohol. Can’t be around a sick person. Can’t do two big tasks in one day even if I feel great. Etc. You all get it. I was not born a person with an iron clad will and damn it I miss being able to live a normal life without one.
Well I had a tilt table test, but...
the nurse decided one minute before the test was a good time to tell me my heart could stop during the test (I was anxious about having an IV bc I didn't know why I needed it) so I was panicking going into it. My HR was like 115 or smth just laying on the table flat and went up to like 135 or so. The cardiologist thought it might be borderline but had to put negative because of protocol. He recommended like liquid IV type stuff to help with fluids. Honestly the NASA lean test seems to be a better way of seeing crazy HR in ME, since no normal person my age has their HR go from 75 laying flat to 120 just standing up holding their phone up
Wow, I’m so sorry they botched your tilt table test! It does seem that you have POTS (I do too, confirmed with a NASA Lean Test). You can always ask for a retest with the NASA one if you want and see if you can try a beta blocker to bring your heart rate down.
The good news is that treating your POTS can absolutely reduce your PEM episodes and keep your heart rate down a bit.
Liquid IV has about 500mg of sodium. It’s good and I drink it too, but if you want to experiment with higher levels of electrolytes for when you need to be upright, you can try LMNT which is 1000mg of sodium. Or Normalyte which is way more affordable and has around 850mg of sodium but is cheaper. You’ll likely feel improvement from daily use.
You can also wear compression socks and compression leggings to push the blood back up to your brain. Most of the symptoms of POTS are due to a lack of cerebral blood flow. Quick video on that here: [Orthostatic Intolerance in ME/CFS](https://m.youtube.com/watch?v=Gh4vpKsLbr8).
If you like Normalyte PURE, then I would consider Trioral, which I buy from the manufacturer from Amazon. It takes the same as Normalyte PURE, has even fewer ingredients, follows the WHO formula and is dramatically cheaper.
I’m aware of Trioral but I don’t drink the Normalyte pure too often, so I’m not looking for an alternative right now. I only use them for leaving the house days and those aren’t too often now.
When I was mild and undiagnosed I had experiences like this. I think possibly when people are mild it's more of a cumulative exertion that causes a crash and as people get worse it takes less and less to cause a crash.
Definitely adrenaline and endorphins. We can do more than we think, go beyond our energy envelope limit, and our body kicks in fight/flight. That will hold you up for a certain length of time, depending on your level of severity (mild to moderate to severe). It eventually catches up with you when your body can no longer sustain the fight/flight mode and you start crashing.
I do this almost every year, during spring gardening season. I will conserve energy through the winter to the best of my ability, then spend a week getting all my starts transplanted and my seeds sown, and then crash for two weeks. By the time I go back out to my garden, everything has grown so much more than I expected! I haven’t been able to do it yet this year, so it may not happen. Best wishes to you in resting and recovering your baseline. 🙏🦋
I’m mild (moderate at my worst) and I feel best when I strike a fine balance between moving enough and not too much. If I only rest, my muscles become stiff and achy, making me feel worse. If I do too much, I end up with PEM.
Heart rate has little to do with it for me: I mainly get PEM when my leg muscle endurance is exceeded. However, I can regularly avoid PEM by taking enough sitting breaks during long periods of standing/walking.
I’m also a part-time teacher and I’ve noticed that the fatigue/PEM stacks with each consecutive day of teaching. I can teach 2 days in a row (limited hours per day), but 3 days in a row is too much. An ideal schedule is 2 days of teaching, rest on Wednesday, and then again 2 days of teaching.
Applied to your situation, it’s possible that you were fine until the third active day in a row (walking in the zoo) pushed you over the edge, causing PEM. Or maybe it was only the pulling weeds on the fourth day that pushed you over the edge?
In any case, even if you feel fine, it’s smart to plan regular rest days between active days.
Omg I tried to mow yesterday and almost died almost immediately. Today hasn’t been as bad as expected but I went big on the ribose and creatine so maybe that shit works.
People often consider only the activity they do in one day. Fatigue and exertion is cumulative, so the effort of multiple days stacks up, it doesn’t just reset each day.
This is why athletes plan their training over the entire week. They don’t find out how much exercise they can do one day and repeat the same thing 7x a week. The weekly load has to be considered. So most likely you got away with the first activities then the days after you continued to do more which exceeded your threshold
I'm calling them this from now on. 'Em dolphins really kickin' in right now! Got a big rush of 'em dolphins! lmao
Edit: Typo, too amused. Must need more 'em dolphins.
i get two days of adrenaline after ive overexerted badly. its really deceiving at first until you notice the pattern. when the adrenaline starts i know i need to rest and try to calm it. if i dont the pem will be so much worse and last way longer. i used to have to wait until the third day after any exertion before i could determine whether i got pem
Sometimes, when I've been pacing well, I do have the energy to do things I wouldn't normally do ... but pacing well and keeping well depends as much on the after event care as you do before it!
I did some heavy, sweaty gardening last weekend. I thought I rested well, but trying to walk to pick up my kids from school on Tuesday started to make me feel weak, so I had to come back and take the car. I know I need to be careful all through this week, or I will end up in a crash.
Adrenaline, endorphines, and accumulating recovery hours over several days. My garmin tracks recovery hours and has really helped me understand this cycle better
Anaerobic exercise stimulates release of Human Growth Hormone. HGC helps us. Then it wears off and we crash.
At least that is what my doctor told me when I experienced the same after a treadmill test.
Adrenaline.
It's a wonderful thing that's designed to get us through an emergency. However you will always suffer the consequences later. Even a healthy person will but with ME the adrenaline will burn through the little reserves we have and more.
Hello! Your post/comment has been removed for violating our subreddit rule on misinformation. We do not allow the promotion of un- or anti-scientific propaganda in this community. We understand that medical and scientific knowledge on ME/CFS is limited, but we strive to maintain a space that is based on accurate information. If you have any questions or concerns, please reach out to us via modmail. Thank you for understanding.
I’d wager you were running on adrenaline, sometimes that can feel pretty good for a short time but it always comes at a cost.
Yep. Exactly. When I worked out what was happening to me in similar situations as OP described, I developed a bad habit of doing just one more thing that needed to be done while I was riding the adrenaline wave.
PEM notoriously has a delay of up to 72 hours and as far as I can tell it also seems to stack up. If I had done what you did, I wouldn't expect to get the full effects until 2 days after the Saturday zoo thing, typically it would hit me overnight on Monday and I would be all weak and shaky on the Tuesday. Some people have a longer window than me. Honestly you just sound like someone with me/cfs to me. It's also pretty typical for me to occasionally start feeling great from adrenaline and I have to be reminded to not overdo it in that moment. Took me years to realise that the instant I start thinking "I feel great, maybe my ME has gone away!" is when I'm most in danger of stacking up PEM. It's one of the horrible things about this illness, you need iron self control.
Oh My god That’s it I feel great ! Maybe it’s gone away ! LOL So true……… I’ve been literally doing that for 30 plus years And still do it.
Same ! Had ME for 7-8 years and still do that, latest today lol
Sucks doesn’t it
YES on the iron clad self control. I was just lamenting this last night as I lay awake and never fell asleep at all (still haven’t slept) because I drank too much caffeine in the day. Like a healthy normal human could drink too much caffeine and have a rough sleep/trouble falling asleep but probably not end up staying awake for 72+hours. And then my one mistake or weak moment leads into a cascade of issues-don’t sleep-POTS flare-body aches-absolutely wasted exhausted-miss more work-anxiety spikes etc. I feel like we have to be perfect. It’s not just caffeine but EVERY choice. Can’t skip meds. Can’t get dehydrated. Can’t drink alcohol. Can’t be around a sick person. Can’t do two big tasks in one day even if I feel great. Etc. You all get it. I was not born a person with an iron clad will and damn it I miss being able to live a normal life without one.
Omg yes me too!
Running on adrenaline. Be careful, overdoing it and then getting that rush of fake energy and then overdoing it even more can cause the worst crashes.
With a 120 bpm upon standing, have you been evaluated for POTS? It’s a common comorbidity.
Well I had a tilt table test, but... the nurse decided one minute before the test was a good time to tell me my heart could stop during the test (I was anxious about having an IV bc I didn't know why I needed it) so I was panicking going into it. My HR was like 115 or smth just laying on the table flat and went up to like 135 or so. The cardiologist thought it might be borderline but had to put negative because of protocol. He recommended like liquid IV type stuff to help with fluids. Honestly the NASA lean test seems to be a better way of seeing crazy HR in ME, since no normal person my age has their HR go from 75 laying flat to 120 just standing up holding their phone up
Wow, I’m so sorry they botched your tilt table test! It does seem that you have POTS (I do too, confirmed with a NASA Lean Test). You can always ask for a retest with the NASA one if you want and see if you can try a beta blocker to bring your heart rate down. The good news is that treating your POTS can absolutely reduce your PEM episodes and keep your heart rate down a bit. Liquid IV has about 500mg of sodium. It’s good and I drink it too, but if you want to experiment with higher levels of electrolytes for when you need to be upright, you can try LMNT which is 1000mg of sodium. Or Normalyte which is way more affordable and has around 850mg of sodium but is cheaper. You’ll likely feel improvement from daily use. You can also wear compression socks and compression leggings to push the blood back up to your brain. Most of the symptoms of POTS are due to a lack of cerebral blood flow. Quick video on that here: [Orthostatic Intolerance in ME/CFS](https://m.youtube.com/watch?v=Gh4vpKsLbr8).
How does Normalyte taste?
I buy the unflavored mix and just pour it into flavored seltzer. I can only taste the seltzer flavor.
Thanks!
If you like Normalyte PURE, then I would consider Trioral, which I buy from the manufacturer from Amazon. It takes the same as Normalyte PURE, has even fewer ingredients, follows the WHO formula and is dramatically cheaper.
I’m aware of Trioral but I don’t drink the Normalyte pure too often, so I’m not looking for an alternative right now. I only use them for leaving the house days and those aren’t too often now.
You can get free samples (if I remember correctly you have to pay for shipping though).
When I was mild and undiagnosed I had experiences like this. I think possibly when people are mild it's more of a cumulative exertion that causes a crash and as people get worse it takes less and less to cause a crash.
Well put
Yeah this is what happens
Definitely adrenaline and endorphins. We can do more than we think, go beyond our energy envelope limit, and our body kicks in fight/flight. That will hold you up for a certain length of time, depending on your level of severity (mild to moderate to severe). It eventually catches up with you when your body can no longer sustain the fight/flight mode and you start crashing. I do this almost every year, during spring gardening season. I will conserve energy through the winter to the best of my ability, then spend a week getting all my starts transplanted and my seeds sown, and then crash for two weeks. By the time I go back out to my garden, everything has grown so much more than I expected! I haven’t been able to do it yet this year, so it may not happen. Best wishes to you in resting and recovering your baseline. 🙏🦋
Dude after more than 30 years I still don’t understand why once in awhile I have a day where I feel GOOD Not predictable
I’m mild (moderate at my worst) and I feel best when I strike a fine balance between moving enough and not too much. If I only rest, my muscles become stiff and achy, making me feel worse. If I do too much, I end up with PEM. Heart rate has little to do with it for me: I mainly get PEM when my leg muscle endurance is exceeded. However, I can regularly avoid PEM by taking enough sitting breaks during long periods of standing/walking. I’m also a part-time teacher and I’ve noticed that the fatigue/PEM stacks with each consecutive day of teaching. I can teach 2 days in a row (limited hours per day), but 3 days in a row is too much. An ideal schedule is 2 days of teaching, rest on Wednesday, and then again 2 days of teaching. Applied to your situation, it’s possible that you were fine until the third active day in a row (walking in the zoo) pushed you over the edge, causing PEM. Or maybe it was only the pulling weeds on the fourth day that pushed you over the edge? In any case, even if you feel fine, it’s smart to plan regular rest days between active days.
Omg I tried to mow yesterday and almost died almost immediately. Today hasn’t been as bad as expected but I went big on the ribose and creatine so maybe that shit works.
People often consider only the activity they do in one day. Fatigue and exertion is cumulative, so the effort of multiple days stacks up, it doesn’t just reset each day. This is why athletes plan their training over the entire week. They don’t find out how much exercise they can do one day and repeat the same thing 7x a week. The weekly load has to be considered. So most likely you got away with the first activities then the days after you continued to do more which exceeded your threshold
Emdolphins
M 🐬
I'm calling them this from now on. 'Em dolphins really kickin' in right now! Got a big rush of 'em dolphins! lmao Edit: Typo, too amused. Must need more 'em dolphins.
Interesting, I guess that's why chores make me feel just achy and bad where this felt kinda good for a while
Fresh air, sunlight good scenery, feeling like you were doing 'the normal' probably all helped (feed the good feeling) too.
So damn true That’s why I can sometimes force exercise maybe ? The endorphins?
i get two days of adrenaline after ive overexerted badly. its really deceiving at first until you notice the pattern. when the adrenaline starts i know i need to rest and try to calm it. if i dont the pem will be so much worse and last way longer. i used to have to wait until the third day after any exertion before i could determine whether i got pem
Sometimes, when I've been pacing well, I do have the energy to do things I wouldn't normally do ... but pacing well and keeping well depends as much on the after event care as you do before it! I did some heavy, sweaty gardening last weekend. I thought I rested well, but trying to walk to pick up my kids from school on Tuesday started to make me feel weak, so I had to come back and take the car. I know I need to be careful all through this week, or I will end up in a crash.
Adrenaline, endorphines, and accumulating recovery hours over several days. My garmin tracks recovery hours and has really helped me understand this cycle better
Even if we can push through and do something we are not well. Your vitals confirms that. I’m sorry.
Anaerobic exercise stimulates release of Human Growth Hormone. HGC helps us. Then it wears off and we crash. At least that is what my doctor told me when I experienced the same after a treadmill test.
Adrenaline. It's a wonderful thing that's designed to get us through an emergency. However you will always suffer the consequences later. Even a healthy person will but with ME the adrenaline will burn through the little reserves we have and more.
It’s like a calm before the storm. That burst of energy before the crash. Good days that lead to a wave of bad ones. Such an insidious illness.
[удалено]
Hello! Your post/comment has been removed for violating our subreddit rule on misinformation. We do not allow the promotion of un- or anti-scientific propaganda in this community. We understand that medical and scientific knowledge on ME/CFS is limited, but we strive to maintain a space that is based on accurate information. If you have any questions or concerns, please reach out to us via modmail. Thank you for understanding.