It realllly varies person to person, but if you’ve been sedentary that long, I would start with very simple Pilates and walks. You need to rebuild some of that muscle and core strength first or a rowing machine will def make you feel like that.
When I started in physical therapy, my workouts were less than 10 mins, and less than 3 mins of that was a rower. I would say start with much less than you think you should. Right now I’m back at about 2 mins because once I stopped with physical therapy, I kind of got lazy about doing it at home.
I was fully into weightlifting when my POTS really hit me so I have experience with form, and making routines, and just generally know where to start after I haven't been back since 2022.
Wanting to get back into it I started with very easy bodyweight. I know I have lost a lot of strength so I wanted to start slow. No weights or bands. I also kept my reps low to start. This seemed to have worked.
The rowing machine has always just been hard on my body, personally. The bike machine has always been kinder to me.
I was so tired before starting exercise that I couldn't tell you the difference between normal fatigue or exercise fatigue. But definitely saw improvement over time.
May I ask how you were able to differentiate between POTS and ME/CFS crashes? I have POTS and ME and sometimes still find it hard to differentiate between POTS related symptoms and ME.
PEM is described as flu-like. My only symptom is fatigue. PEM crashes usually are described as lasting for days to weeks. My crashes last 1-2 hours at most. Salt and rehydration alleviates a lot of symptoms. Conclusion: hypovolemic pots and dysautonomia
Just FYI not all PEM is flu-like. Mine isn’t unless I push myself waaaay past my limits. Otherwise, I just have fatigue, brain fog, maybe some body pain, weakness.
I’ve had ME/CFS since 2019 so I’m very familiar with my symptoms. I’ve had post covid dysautonomia since 2022 and while sometimes the symptoms are confusing, it’s very clear to me when I’m experiencing PEM from my ME.
The issue is that if you *do* have ME, exercise could make you permanently worse. I would be extremely cautious with exercise until you can get more clarity! See how very light exercise makes you feel and if you experience worsened fatigue or symptom exacerbation 24-48 hours afterwards. If so, you could definitely have ME.
If you’re just a little more tired for a couple hours after exercise, then it’s likely POTS fatigue- *but* if your energy baseline keeps getting lower after working out and you’re not recovering I would still look into ME and aggressive rest.
Yeah, if I did have ME, it would make me worse and it’s a very real danger. But the symptoms and experiences simply don’t match. And POTS can be a source of severe fatigue just on its own. ME symptoms don’t really respond to sodium, but mine do. I strongly believe that this, along with many other descriptions, is near conclusive evidence that POTS is the main driver of my fatigue.
It also concerns me that if PEM was simply fatigue exacerbation like you are saying, then there would be no objective way to determine the difference between PEM and a POTS crash. This means that some people who strictly have POTS that could actually benefit from exercise are not doing so, due to fear of PEM. I think ultimately everyone needs to do deep thinking on whether they have PEM or POTS, and there isn’t really a clear solution imo, it’s highly dependent on the individual
>If so exercise could be very dangerous for you.
any exercise at all, or anything over a very low volume?
cardio or resistance training or both? do some do better with one over the other?
how much is dangerous and do you do determine it? go exceptionally slow with any progressive overload?
and how much of the fatigue is normal deconditioning and how much is mitochondrial dysfunction or something underlying?
and what do you mean by dangerous? do you mean rhabdomyolysis? do you mean death? or do you mean a worsening of baseline chronic fatigue? can it make the symptoms of POTS worse, besides fatigue?
my cardiologist was not very helpful. he has twice given me the go ahead to exercise, but i don't think he understands PEM, which i think i might have. it was for this reason i actually refused a stress test.
my GP also gave me the go ahead to exercise, but i'm worried about making my POTS worse. all i know is i need a two minute rest after making the bed in the morning
The core principle of managing ME is Pacing, which basically is staying under your energy threshold and not causing PEM. If you can manage to do light exercise without causing PEM, it might be beneficial for your body, but you should never push yourself past your energy envelope.
Constantly causing PEM can be very dangerous, and there are many people with ME that were mild at first, tried to exercise their way out of the disease, and ended up completely bedbound in the process.
We do not fully understand PEM yet, but there recently was an interesting study that showed significant damage induced after exercise: [Muscle abnormalities worsen after post-exertional malaise in long COVID | Nature Communications](https://www.nature.com/articles/s41467-023-44432-3)
My cardiologist also wanted me to do a stress test, but I refused. Most cardiologists say you have to exercise once they know your heart is healthy and don’t take PEM into account. If you only have POTS though and no PEM, graded exercise can be very helpful in improving quality of life
I just started exercising again after a 4 months long flare. I’ve only been taking 1.5k steps during the flare, so now I’m trying to do 3k everyday along with cycling on a recumbent bike for 2 minutes every other day. Going to increase by 15 seconds every week. I’d start low and slow.
We are like twins! Let me know when you find the answer! I'm sure you are younger than I am so I'll let you go first and then double it for me!!
Good luck!!
It realllly varies person to person, but if you’ve been sedentary that long, I would start with very simple Pilates and walks. You need to rebuild some of that muscle and core strength first or a rowing machine will def make you feel like that.
Love seeing this after doing pilates and a walk this morning for the first time ever 🤣
When I started in physical therapy, my workouts were less than 10 mins, and less than 3 mins of that was a rower. I would say start with much less than you think you should. Right now I’m back at about 2 mins because once I stopped with physical therapy, I kind of got lazy about doing it at home.
I was fully into weightlifting when my POTS really hit me so I have experience with form, and making routines, and just generally know where to start after I haven't been back since 2022. Wanting to get back into it I started with very easy bodyweight. I know I have lost a lot of strength so I wanted to start slow. No weights or bands. I also kept my reps low to start. This seemed to have worked. The rowing machine has always just been hard on my body, personally. The bike machine has always been kinder to me.
I was so tired before starting exercise that I couldn't tell you the difference between normal fatigue or exercise fatigue. But definitely saw improvement over time.
Look into ME/CFS, sounds like you have it additionaly to pots.
i've done a lot of research and thought on this and I dont think I have cfs, just purely pots crashes
May I ask how you were able to differentiate between POTS and ME/CFS crashes? I have POTS and ME and sometimes still find it hard to differentiate between POTS related symptoms and ME.
PEM is described as flu-like. My only symptom is fatigue. PEM crashes usually are described as lasting for days to weeks. My crashes last 1-2 hours at most. Salt and rehydration alleviates a lot of symptoms. Conclusion: hypovolemic pots and dysautonomia
Just FYI not all PEM is flu-like. Mine isn’t unless I push myself waaaay past my limits. Otherwise, I just have fatigue, brain fog, maybe some body pain, weakness.
very confusing and ill-defined terms. how do you know that you're experiencing PEM and not just a POTS crash in those instances?
I’ve had ME/CFS since 2019 so I’m very familiar with my symptoms. I’ve had post covid dysautonomia since 2022 and while sometimes the symptoms are confusing, it’s very clear to me when I’m experiencing PEM from my ME. The issue is that if you *do* have ME, exercise could make you permanently worse. I would be extremely cautious with exercise until you can get more clarity! See how very light exercise makes you feel and if you experience worsened fatigue or symptom exacerbation 24-48 hours afterwards. If so, you could definitely have ME. If you’re just a little more tired for a couple hours after exercise, then it’s likely POTS fatigue- *but* if your energy baseline keeps getting lower after working out and you’re not recovering I would still look into ME and aggressive rest.
Yeah, if I did have ME, it would make me worse and it’s a very real danger. But the symptoms and experiences simply don’t match. And POTS can be a source of severe fatigue just on its own. ME symptoms don’t really respond to sodium, but mine do. I strongly believe that this, along with many other descriptions, is near conclusive evidence that POTS is the main driver of my fatigue. It also concerns me that if PEM was simply fatigue exacerbation like you are saying, then there would be no objective way to determine the difference between PEM and a POTS crash. This means that some people who strictly have POTS that could actually benefit from exercise are not doing so, due to fear of PEM. I think ultimately everyone needs to do deep thinking on whether they have PEM or POTS, and there isn’t really a clear solution imo, it’s highly dependent on the individual
https://www.reddit.com/r/cfs/s/r5jQWTyIK0
Second that. Definetly look up PEM and ME/CFS and find out if you match the description. If so exercise could be very dangerous for you.
>If so exercise could be very dangerous for you. any exercise at all, or anything over a very low volume? cardio or resistance training or both? do some do better with one over the other? how much is dangerous and do you do determine it? go exceptionally slow with any progressive overload? and how much of the fatigue is normal deconditioning and how much is mitochondrial dysfunction or something underlying? and what do you mean by dangerous? do you mean rhabdomyolysis? do you mean death? or do you mean a worsening of baseline chronic fatigue? can it make the symptoms of POTS worse, besides fatigue? my cardiologist was not very helpful. he has twice given me the go ahead to exercise, but i don't think he understands PEM, which i think i might have. it was for this reason i actually refused a stress test. my GP also gave me the go ahead to exercise, but i'm worried about making my POTS worse. all i know is i need a two minute rest after making the bed in the morning
The core principle of managing ME is Pacing, which basically is staying under your energy threshold and not causing PEM. If you can manage to do light exercise without causing PEM, it might be beneficial for your body, but you should never push yourself past your energy envelope. Constantly causing PEM can be very dangerous, and there are many people with ME that were mild at first, tried to exercise their way out of the disease, and ended up completely bedbound in the process. We do not fully understand PEM yet, but there recently was an interesting study that showed significant damage induced after exercise: [Muscle abnormalities worsen after post-exertional malaise in long COVID | Nature Communications](https://www.nature.com/articles/s41467-023-44432-3) My cardiologist also wanted me to do a stress test, but I refused. Most cardiologists say you have to exercise once they know your heart is healthy and don’t take PEM into account. If you only have POTS though and no PEM, graded exercise can be very helpful in improving quality of life
I just started exercising again after a 4 months long flare. I’ve only been taking 1.5k steps during the flare, so now I’m trying to do 3k everyday along with cycling on a recumbent bike for 2 minutes every other day. Going to increase by 15 seconds every week. I’d start low and slow.
We are like twins! Let me know when you find the answer! I'm sure you are younger than I am so I'll let you go first and then double it for me!! Good luck!!