Maybe one day there will be enough research into ME CFS and other post viral syndrome so we can have better therapeutics than just being recommended to: "don't do anything with you life!" 🙄
This is exactly it - the best I can hope for is to lessen symptoms somewhat, and in order to achieve this only marginally better outcome I need to live in such a way that I may as well be in a coma, or dead.
@@FionaEm Yes, I get an immediate kind of "I can't do this any more at all, must lie down" kind of thing, but full on crashes are usually delayed. No idea what happened to cause this one unfortunately.
If anyone has a recommendation for a heart monitoring device that gives information in real time, whether it’s watch watch plus chest monitor or whatever, I would be grateful. All the ones I have tried, have a set number below, which you can’t set your high rate alert. Such as, not below 120, or not below 100. It is not helpful if you’re alert heart rate is 85.
Just standing up puts my heart rate 30 beats above my resting heart rate. My current crash followed a sudden increase in heart rate variability of 6 on one day followed immediately by a decrease of 10 the next day! No idea what that means.
@@BeepBopBoop735 Thanks. No, I don't have POTS as far as I'm aware as it's not usually standing up from sitting/lying down that causes my pulse elevation. Rather it's standing for any length of time. The more fatigued I am the shorter the period of standing I can go. Edit. Sorry, I meant to add I wasn't very clear before. When I said standing up I meant keeping on standing. My error.
@@OrganisedPauper POTS relating to moving from supine to sitting to standing, but it also relates to standing still, and sometimes to walking slowly. And POTS is just one kind of orthostatic intolerance. Have a look at the Bateman Horne Center’s resources on orthostatic intolerance, including the NASA Lean Test.
Being a caregiver with PEM is so hard
Maybe one day there will be enough research into ME CFS and other post viral syndrome so we can have better therapeutics than just being recommended to: "don't do anything with you life!" 🙄
This is exactly how I feel
This is exactly it - the best I can hope for is to lessen symptoms somewhat, and in order to achieve this only marginally better outcome I need to live in such a way that I may as well be in a coma, or dead.
This can be helpful, but I do not have PEM until around 24 hrs after an activity, so do not get the dizziness, nausea, etc, until then.
Same. I often get a crash up to 48 hours after too much activity. I'm currently enduring a nasty crash I can't even figure out what caused this one.
We're all different. I get immediate and delayed PEM.
@@FionaEm Yes, I get an immediate kind of "I can't do this any more at all, must lie down" kind of thing, but full on crashes are usually delayed. No idea what happened to cause this one unfortunately.
Thank you. Very helpful.
Very important
If anyone has a recommendation for a heart monitoring device that gives information in real time, whether it’s watch watch plus chest monitor or whatever, I would be grateful. All the ones I have tried, have a set number below, which you can’t set your high rate alert. Such as, not below 120, or not below 100. It is not helpful if you’re alert heart rate is 85.
Are there good apps for Apple Watch to monitor HR changes and get alerts?
Just standing up puts my heart rate 30 beats above my resting heart rate.
My current crash followed a sudden increase in heart rate variability of 6 on one day followed immediately by a decrease of 10 the next day! No idea what that means.
Have you been tested for POTS?
@@BeepBopBoop735 Thanks. No, I don't have POTS as far as I'm aware as it's not usually standing up from sitting/lying down that causes my pulse elevation. Rather it's standing for any length of time. The more fatigued I am the shorter the period of standing I can go. Edit. Sorry, I meant to add I wasn't very clear before. When I said standing up I meant keeping on standing. My error.
@@OrganisedPauper POTS relating to moving from supine to sitting to standing, but it also relates to standing still, and sometimes to walking slowly. And POTS is just one kind of orthostatic intolerance. Have a look at the Bateman Horne Center’s resources on orthostatic intolerance, including the NASA Lean Test.