Thanks so much Sue, this information is gold!! I have been fighting cfs/me for many years snd have had many crashes over that time. I have also had covid 3 month's ago which has worsened my symptoms greatly!! The heart rate monitoring sounds great. I will try that and see uf thst can help me reduce the bad days from over doing it. All the best with your cfs journey and keep the fantastic videos coming!!! Cheers Andrew
Thanks for the kind words, Andrew - I'm so glad you found this video helpful. Sorry to hear of your suffering - 20 years with ME/CFS for me! And I got COVID January 2022 - it took me about 5 months to return to my normal baseline. Besides pacing, you might also find this blog post helpful - in it, I explain what treatments helped me recover from several relapses, including the one post-COVID: livewithcfs.blogspot.com/2022/06/mecfs-lyme-covid-relapses-and-recoveries.html
What is a device that’s available now that allows you to set heart rate alarms during rest and during activity? The Fitbit ones only seem to do this during 10 mins of inactivity, and same for the Apple Watch. The Apple Watch doesn’t do continuous heart rate monitoring. Does any Garmin or Fitbit or wearable allow heart rate alarms both for rest or activity?
For my Apple Watch, I downloaded an app called Beat Watcher ($10) that DOES do continuous HR monitoring AND allows you to set an upper limit. It's still not perfect, as it doesn't work with the underlying Apple fitness app that tracks things like time, HR variability, etc. but it's definitely been helpful. Someone else here in the comments told me about it! And in the notes below the video, I included a link to my blog post about monitoring HR that includes choosing a HRM and compares different ones. Not sure any of them will allow you to set two different sets of limits (though it's easy enough to change it in Beat Watcher). I would paste the link here but YT doesn't like that, so click on the "... more" up above at the end of the shown video description - it's the first link I included.
No, I haven't!! Still on my list :) I know it will simplify things with just one device, and I've heard a lot of people use Heart Rate Variability, too.
@@SueJacksonDE If you have the energy, you can walk into any Apple store and they can help you set it up and answer any questions. Or you can call Apple on the phone for help. Both are free. Or just turn it on! And the software will walk you through connecting it to your phone. At least then you can start collecting data. And learn as you go.
@@JS-ow2ct I am very familiar with the amazing ervices Apple offers - LOVE the Genius bar! That's a great idea :) I know Apple stuff is easy to learn - I've just been feeling overwhelmed. But you're right - I will start it up!
It's hard to compare one person to another because your AT depends on your age, the severity of your ME/CFS & your physical condition (level of fitness). So, I'm 56, my ME/CFS is moderate (thanks to treatments) & I'm fairly fit (considering!) - my AT is about 108 and without beta blockers, my HR is often in the 90's or even 100 white sitting on the couch with my feet up. Stand up and it jumps to 120-ish or higher! So, I really couldn't do anything at all and stay below my AT. Beta blockers drop my HR by about 30 bpm, allowing me to be fairly active without going over my AT (and crashing).
@@SueJacksonDE i try to stay under 120 at all cases. I'm pretty severe, a HR of 100 is normal when standing up already. But i try to avoid anything over 120. When i get over 110 - which happens fast -, i immediately lie down.
@@thepetrolman4879 Have you calculated your AT? Low-dose beta blockers truly changed my life dramatically - now I can not only manage simple daily activities of living without crashing, but I can even exercise a bit - walking and easy strength training - and things like grocery shopping.
Thanks so much Sue, this information is gold!! I have been fighting cfs/me for many years snd have had many crashes over that time. I have also had covid 3 month's ago which has worsened my symptoms greatly!! The heart rate monitoring sounds great. I will try that and see uf thst can help me reduce the bad days from over doing it. All the best with your cfs journey and keep the fantastic videos coming!!! Cheers Andrew
Thanks for the kind words, Andrew - I'm so glad you found this video helpful. Sorry to hear of your suffering - 20 years with ME/CFS for me! And I got COVID January 2022 - it took me about 5 months to return to my normal baseline. Besides pacing, you might also find this blog post helpful - in it, I explain what treatments helped me recover from several relapses, including the one post-COVID: livewithcfs.blogspot.com/2022/06/mecfs-lyme-covid-relapses-and-recoveries.html
This gives me hope. I will try these tools. Thank you SO much for sharing this with all of us. ❤️
So glad you found it helpful! Happy to help. Let me know if you have any questions :) Hope it helps you!
What is a device that’s available now that allows you to set heart rate alarms during rest and during activity? The Fitbit ones only seem to do this during 10 mins of inactivity, and same for the Apple Watch. The Apple Watch doesn’t do continuous heart rate monitoring. Does any Garmin or Fitbit or wearable allow heart rate alarms both for rest or activity?
For my Apple Watch, I downloaded an app called Beat Watcher ($10) that DOES do continuous HR monitoring AND allows you to set an upper limit. It's still not perfect, as it doesn't work with the underlying Apple fitness app that tracks things like time, HR variability, etc. but it's definitely been helpful. Someone else here in the comments told me about it! And in the notes below the video, I included a link to my blog post about monitoring HR that includes choosing a HRM and compares different ones. Not sure any of them will allow you to set two different sets of limits (though it's easy enough to change it in Beat Watcher). I would paste the link here but YT doesn't like that, so click on the "... more" up above at the end of the shown video description - it's the first link I included.
Thank you for this great explanation.
You're welcome. Glad it was helpful to you. Let me know if you have any questions.
Did you figure out how to use your new Apple Watch? It’ll give you even better data for step counting, and so much more!!
No, I haven't!! Still on my list :) I know it will simplify things with just one device, and I've heard a lot of people use Heart Rate Variability, too.
@@SueJacksonDE If you have the energy, you can walk into any Apple store and they can help you set it up and answer any questions. Or you can call Apple on the phone for help. Both are free. Or just turn it on! And the software will walk you through connecting it to your phone. At least then you can start collecting data. And learn as you go.
@@JS-ow2ct I am very familiar with the amazing ervices Apple offers - LOVE the Genius bar! That's a great idea :) I know Apple stuff is easy to learn - I've just been feeling overwhelmed. But you're right - I will start it up!
Whats your resting HR without Beta Blockers Sue? I don't use Beta Blockers yet, but my HR goes up to 110 when i'm standing.
It's hard to compare one person to another because your AT depends on your age, the severity of your ME/CFS & your physical condition (level of fitness). So, I'm 56, my ME/CFS is moderate (thanks to treatments) & I'm fairly fit (considering!) - my AT is about 108 and without beta blockers, my HR is often in the 90's or even 100 white sitting on the couch with my feet up. Stand up and it jumps to 120-ish or higher! So, I really couldn't do anything at all and stay below my AT. Beta blockers drop my HR by about 30 bpm, allowing me to be fairly active without going over my AT (and crashing).
@@SueJacksonDE i try to stay under 120 at all cases. I'm pretty severe, a HR of 100 is normal when standing up already. But i try to avoid anything over 120. When i get over 110 - which happens fast -, i immediately lie down.
@@thepetrolman4879 Have you calculated your AT? Low-dose beta blockers truly changed my life dramatically - now I can not only manage simple daily activities of living without crashing, but I can even exercise a bit - walking and easy strength training - and things like grocery shopping.
@@SueJacksonDE wow, good to hear. AT is 112 as much as i calculated. I try to avoid it, but when i get to 112 or more, i immediately lie down.
@@thepetrolman4879 That's good - but it's a tough way to live. I get it!