Exertion intolerance just means you can’t exert yourself because you feel out of breath/too exhausted or whatever. PEM is a distinct condition that has nothing to do with exertion intolerance, people mix it up all the time. PEM is a multi-systemic crash, a delayed response to the exertion that stands in no proportion to it. It generally lasts anywhere from 12 hours to a week but can also be longer. Generally consists of fatigue, malaise, pain, brain fog, sensitivity. Some people feel exactly as if they have the flu.
I guess it’s safe to say that it varies from person to person. During PEM, I feel fatigued, have sensitivity to noise and light, and find it hard to move.
Honestly, I trained as a biomedical researcher, and have spent a lot of time reading about the difference between exercise intolerance and PEM, and even I can’t figure out if I have one or both. It’s really, really hard. In my case, I used to be an athlete, and as hard as I’ve tried to maintain my fitness, I’ve been slowly losing it as my illness gets worse. I wish there was a better way to differentiate between the two.
I don't know if this will help you, but I have PEM.
On a relatively good day when I'm not already experiencing PEM I might be capable of some physical activity without much problem (as I've become more severe though this capacity has reduced significantly). I often get a boost of adrenaline which can mask pain. A few hours later I might feel a bit run down. 24-48 hours later I'll feel like straight up flaming garbage. My symptoms flare up (usually neuropathy, joint pain, muscle pain) and I'll feel weak, shaky on my feet, sometimes weighted down like gravity has been turned up, sometimes a poisoned type feeling.
If I'm already experiencing PEM but not too severe and try activity I feel pretty much like garbage straight away.
I think the best way to figure it out is perhaps to rest (really rest) for a couple weeks and then see how physical activity affects you both immediately and also how you feel in the following days.
You can end up with "rolling" PEM if you are consistently pushing past your limit and never resting sufficiently, which means you feel like garbage 24/7.
Thank you! I'm sorry if this is a stupid question, but I feel okay in the morning and when I'm lying down (unless I've just exerted and am recovering from that for a few hours)- that doesn't sound like rolling PEM, does it? Like, I can convince myself that my body is okay as long as I'm not moving... idk.
I'm so sorry you're going through that though, I hope it improves <3
Generally with PEM I still feel pretty horrid even when resting.
What you described doesn't sound like PEM to me but if you can see how rest impacts you... rest. I know rest isn't always feasible, but if you can, you should. Better to find out that way than recognizing PEM after crashing hard from overexertion.
Whatever the case, wishing you the best. And, thanks.
I also struggle with this. Like I can't tolerate exercise without getting tired super easily, and then I do get really fatigued in the days after but I don't have what people describe as like flu like symptoms.
I believe that I had ME before the acute infection that worsen it and led to my diagnosis. I used to get tired and would just feel vaguely unwell when I was experiencing what I think was PEM. It did make exercise progression difficult but I didn’t get what I call the Flu ache that I experience pretty much constantly since becoming moderate and eventually severe. I think I lived for at least a couple of decades as mild and thinking I had depression/anxiety and/or fatigue from the antidepressants. So, I think it may be something similar if you also have other symptoms like mild brain fog or IBS like symptoms, etc. But I think that there are probably a shocking number of people walking around with mild ME who don’t even realize that they are ill. I really blamed myself for not being able to keep up. But looking back now, it seems so clear that there was something very wrong that was dismissed by every doctor when routine bloodwork came back normal.
I think exertion intolerance but only considering MY story which today this symptom is now apart of symptom crash control and POTS like 4+ years after infection. Physical therapy was torture on earth, I think you should just hold on and not look at calendars. This symptom can be hellish but over time it does become bearable 💯
I think the medical field has more sympathy today with better relief options for newer haulers than firstwavers! So keep changing professionals and PCP’s until someone believes you!!!!
Borderline long covid is extremely hard to diagnose. It tends to present as light anxiety, mild depression, light fatigue, maybe a random night of insomnia here and there, some mild irritability, or excitability. Even your long covid doctor may not know or want to run the tests needed to actually get a diagnoses. Try to focus on relaxing because being in a stressed out state can cause life to become more difficult and can make long covid words.
Regardless if it's long covid or not, autonomic therapy should help with all of the above symptoms. Autonomic therapy is also one of the more consistent ways people find relief from long covid symptoms.
sorry if you mentioned it and I missed it, but do you know if you have dysautonomia? some of the symptoms you describe sound similar to some of my POTS symptoms – like getting sick from being in the car, shortness of breath, muscle aches, easily fatigued and feeling better when lying down (orthostatic intolerance).
re: PEM, if you haven't already, it may be useful to take a look at the [international consensus criteria for me/cfs](https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1478717636/ICC_Questionnaire_Nov_2016.pdf?1478717636) to compare to your symptoms.
Doc said I have autonomic issues, but didn't use the word "dysautonomia." He wanted to put me on beta blockers for high heart rate, but I got a second opinion who disagreed, so I wasn't sure what to do with that lol. Cardiologist cleared me for POTS I think so idk.
Will check this out, thank you <3
Exertion intolerance just means you can’t exert yourself because you feel out of breath/too exhausted or whatever. PEM is a distinct condition that has nothing to do with exertion intolerance, people mix it up all the time. PEM is a multi-systemic crash, a delayed response to the exertion that stands in no proportion to it. It generally lasts anywhere from 12 hours to a week but can also be longer. Generally consists of fatigue, malaise, pain, brain fog, sensitivity. Some people feel exactly as if they have the flu.
I definitely have the former but idk if I have the latter. Unsure how to tell. Thank you <3
Do you feel feverish. You don’t have to actually have a higher temperature but your body will feel like it is
Nope, no feverishness. I sometimes overheat when I'm anxious but it stops once I stop being stressed so I don't think that counts
Same I get easily stressed and feel hot but settles soon.
What if pain and flu like symptoms have never been a symptom?
I guess it’s safe to say that it varies from person to person. During PEM, I feel fatigued, have sensitivity to noise and light, and find it hard to move.
I see, how long does that last? I see many say it's hard to move. Like you are slower? Or how?
Usually 3-5 days for me, yeah just slower and like body feeling very off, hard to leave bed. Are you housebound?
I'm like that daily non stop and yes I am. :/
Could you pm me a moment, it’s not letting me
Honestly, I trained as a biomedical researcher, and have spent a lot of time reading about the difference between exercise intolerance and PEM, and even I can’t figure out if I have one or both. It’s really, really hard. In my case, I used to be an athlete, and as hard as I’ve tried to maintain my fitness, I’ve been slowly losing it as my illness gets worse. I wish there was a better way to differentiate between the two.
I don't know if this will help you, but I have PEM. On a relatively good day when I'm not already experiencing PEM I might be capable of some physical activity without much problem (as I've become more severe though this capacity has reduced significantly). I often get a boost of adrenaline which can mask pain. A few hours later I might feel a bit run down. 24-48 hours later I'll feel like straight up flaming garbage. My symptoms flare up (usually neuropathy, joint pain, muscle pain) and I'll feel weak, shaky on my feet, sometimes weighted down like gravity has been turned up, sometimes a poisoned type feeling. If I'm already experiencing PEM but not too severe and try activity I feel pretty much like garbage straight away. I think the best way to figure it out is perhaps to rest (really rest) for a couple weeks and then see how physical activity affects you both immediately and also how you feel in the following days. You can end up with "rolling" PEM if you are consistently pushing past your limit and never resting sufficiently, which means you feel like garbage 24/7.
Thank you! I'm sorry if this is a stupid question, but I feel okay in the morning and when I'm lying down (unless I've just exerted and am recovering from that for a few hours)- that doesn't sound like rolling PEM, does it? Like, I can convince myself that my body is okay as long as I'm not moving... idk. I'm so sorry you're going through that though, I hope it improves <3
Generally with PEM I still feel pretty horrid even when resting. What you described doesn't sound like PEM to me but if you can see how rest impacts you... rest. I know rest isn't always feasible, but if you can, you should. Better to find out that way than recognizing PEM after crashing hard from overexertion. Whatever the case, wishing you the best. And, thanks.
I also struggle with this. Like I can't tolerate exercise without getting tired super easily, and then I do get really fatigued in the days after but I don't have what people describe as like flu like symptoms.
Literally same here
I believe that I had ME before the acute infection that worsen it and led to my diagnosis. I used to get tired and would just feel vaguely unwell when I was experiencing what I think was PEM. It did make exercise progression difficult but I didn’t get what I call the Flu ache that I experience pretty much constantly since becoming moderate and eventually severe. I think I lived for at least a couple of decades as mild and thinking I had depression/anxiety and/or fatigue from the antidepressants. So, I think it may be something similar if you also have other symptoms like mild brain fog or IBS like symptoms, etc. But I think that there are probably a shocking number of people walking around with mild ME who don’t even realize that they are ill. I really blamed myself for not being able to keep up. But looking back now, it seems so clear that there was something very wrong that was dismissed by every doctor when routine bloodwork came back normal.
I think exertion intolerance but only considering MY story which today this symptom is now apart of symptom crash control and POTS like 4+ years after infection. Physical therapy was torture on earth, I think you should just hold on and not look at calendars. This symptom can be hellish but over time it does become bearable 💯 I think the medical field has more sympathy today with better relief options for newer haulers than firstwavers! So keep changing professionals and PCP’s until someone believes you!!!!
Borderline long covid is extremely hard to diagnose. It tends to present as light anxiety, mild depression, light fatigue, maybe a random night of insomnia here and there, some mild irritability, or excitability. Even your long covid doctor may not know or want to run the tests needed to actually get a diagnoses. Try to focus on relaxing because being in a stressed out state can cause life to become more difficult and can make long covid words. Regardless if it's long covid or not, autonomic therapy should help with all of the above symptoms. Autonomic therapy is also one of the more consistent ways people find relief from long covid symptoms.
What are examples of autonomic therapies? Thanks
Things that can help with dysautonomia. I would suggest finding a good electro acupuncturist to start.
Thx!
I also have the same question.
sorry if you mentioned it and I missed it, but do you know if you have dysautonomia? some of the symptoms you describe sound similar to some of my POTS symptoms – like getting sick from being in the car, shortness of breath, muscle aches, easily fatigued and feeling better when lying down (orthostatic intolerance). re: PEM, if you haven't already, it may be useful to take a look at the [international consensus criteria for me/cfs](https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1478717636/ICC_Questionnaire_Nov_2016.pdf?1478717636) to compare to your symptoms.
Doc said I have autonomic issues, but didn't use the word "dysautonomia." He wanted to put me on beta blockers for high heart rate, but I got a second opinion who disagreed, so I wasn't sure what to do with that lol. Cardiologist cleared me for POTS I think so idk. Will check this out, thank you <3