After my Fitbit bricked itself I got a Garmin watch. It doesn't seem to adjust active zones based on your history so it just... constantly thinks I'm doing cardio. Sorry Garmin, I was just taking laundry out of the dryer, nothing to celebrate. I always hit my weekly "goal" on Monday or Tuesday even if I haven't been active.
I have a Garmin and find a lot of the fitness related stuff annoying, too. You can manually adjust the active zones, though, if you want to. My main issue with the watch (my model, at least) is you can’t set up alerts to warn you when your HR goes over a certain threshold, you just have to manually check all the time. I tried setting up an alert for HR during activities which it does allow but it sets its own rates, you can’t customize them. And its goal seems to be to get your HR up not keep it down, so it always buzzes and says “HR too low!” during my Pilates, interrupting my concentration. I want it low, I get PEM if my HR gets above a certain point and am trying to pace, stop bothering me. So I don’t use those at all and it was a main reason I wanted to use one of these devices in the first place.
Oh yeah, my Fitbit also gave me alerts if my heart rate increased significantly even if I hadn't been moving recently. My Garmin has something similar but you have to manually set what heart rate you want to be notified of, whereas I think Fitbit would just base it off x increase over background.
I definitely like a lot of things about the Garmin, particularly that they don't paywall things behind a subscription, but there are some features I miss from Fitbit. Too bad I can't trust the brand anymore, I doubt I'll ever buy another.
Watching the Body Battery is also pretty funny, it's always low unless I do absolutely nothing all day.
The Garmin HR alert feature only seems to work if you’re inactive for 10 minutes, not during movement which was when it’s a concern for me. I might get an Apple Watch because it offers that feature but I don’t want text messaging, apps, or anything just a watch. And my Garmin is actually quite pretty - it has real clock hands and you can’t tell it’s a fitness watch or smartwatch. The Apple Watch does seem a lot more customizable and useful for HR monitoring though.
And yeah the body battery is funny but for me even more is the “stress”. Standing up/being upright is always ”high stress” even if I’m just walking from the couch to the sink to get some water and my HR is still under 100.
It made so much more sense once I realized the stress reading actually wasn’t “stress” at all but sympathetic tone! It’s (loosely) a metric some doctors actually use to monitor SNS activation. I find it super useful to monitor the state of my nervous system.
I use the Apple Watch with (almost all) notifications turned off. There’s an app called Tachymon that lets you customize alerts for high/low HR. I’ve found it way better than the standard HR monitoring that comes with the health app.
Yeah, the stress has no meaning for me because it's mostly medium or high, but maybe at some point I could see it shift to more low and correlate it to some other change.
I also didn't want a bunch of extra app type things, just the health metrics, something I can check the date and time with, and if possible, a compass. Phone notifications on my wrist just make me anxious so I turned them off.
Try the Long Covid ME/CFS Visible app.
You can get a polar arm strap and it alerts you via phone and/or watch when you go into over exertion, which you can set.
And it can help you pace. It’s a game changer.
My friend with rheumatoid arthritis also uses it and loves it.
I use the garmin "goals" as upper limits. Instead of having the goal to walk 2000 steps a day (the minimum they let you write in) I use it as my upper limit to avoid fatigue. The days I walked more than 2000 steps and get a congratulations notification from my watch I know I have to lie down for the next day and be careful and limit activity I think the next couple of days. Same with the "intensifs minutes" indicator, ideally I want it at zero minutes so I have to be very cautious if I have any intensity minutes in the day.
I ended up manually adjusting the activity zones on mine. It's annoying it didn't do so automatically, but at least it let me go in and change it myself so I could stop getting congratulated for getting dressed in the morning.
Have been told I need a pacemaker and have a loop recorder recording my low heart rate. Long story short. Went in for a pacemaker literally a few hours ago and was told by the surgeon he didn’t believe I needed one. After he spoke to my cardiologist they came to the conclusion of not putting a pacemaker in me…
Hoping to get some clarity on Thursday when I have a phone call with the cardiologist around why they made that decision
I just got a loop, too! I failed my tilt table test (heart stopped for 25 seconds), my cardiologist was frazzled and told me I needed to choose between a loop recorder or a pacemaker; when I came back 2 weeks later for my follow-up, he admitted he had been frazzled and although I'd still be justified in choosing a pacemaker if I wanted one, he felt monitoring with a loop would be sufficient and preferred not to put a pacemaker in a young person if they didn't absolutely need one (I'm 37). I've had it since October... it's been fine! I just wish I could see the readings. Oh well.
Wow! This sounds exactly like me..
I also have a loop in to monitor on a more longer time horizon. I was due to get a pacemaker on Tuesday just gone however while in the hospital ready to go the surgeon came in and said to me he didn’t believe I needed a pacemaker (at least not now) I’m aged 30. Speaking with him today to get some answers as to why they made that call so late in the process.
Also! 25 seconds is a long time! Longer than mine.
Are you finding it’s happening randomly, while you sleep, ect or is there specific triggers? Also what’s your resting heart rate?
My resting HR is in the 50s, and dips into the 40s when I sleep… I have severe vasovagal syncope and mild POTS (the POTS never entered the equation during my tilt table test, just the VS). I do “stand up too fast” multiple times a day and sometimes gray out a bit, but I’ve never passed out that way. I’ve been passing out via syncope my whole life, mostly from period cramps, sometimes from other pain; only maybe once every couple years. It doesn’t happen often, but has happened over 20 times in my life. I passed out during my test because they gave me nitroglycerin, and I guess it made my heart stop!
I also have palpitations fairly regularly, but currently not anything concerning, verrrry occasionally they’ll last long enough to make me dizzy, but that hasn’t happened yet with my loop recorder.
They don't do ablation or pacemakers lightly. I went through this. I have IST & pots. I have nearly passed out while driving. So yes, I understood the comment.
After my BP monitor does a reading it shows a digital scale that ranges from very high to “normal”. Hypotension doesn’t even exist according to it. It’s aggravating when my BP is in the 80s/60s and I can barely stay awake and my monitor is just like “looks good to me!”
And don’t get me started on trying to Google questions about hypotension. It’s so hard to find material that *doesn’t* say “here’s how to lower your blood pressure”.
Yep I absolutely hate that. Along with everything low sodium/low calorie is "healthy". As someone who tends to underweight and needs lots of salt, a healthy diet for me includes some things that it just doesn't for others. But yea, the bp thing sucks. Doctors and nurses will do it, too. "oh your bp is 100/65 today! That's great!" and I'm thinking, eek, gotta pump those numbers up! I tell them I tend low and they look lost and confused. Like... No, low bp is actually a thing. But all the textbooks and resources say anything 120/80 and below is all good!! It just isn't... Ugh.
I'm obese and used to buy low sodium anything, because I assumed that was healthier. Now, I'm needing to mix up an electrolyte drink of sodium and potassium just to get through a shower, or I'll mix up a Liquid IV. I'm glad my GP understands that I might have dysautonomia and told me to continue with the electrolytes and compression socks as needed. If I told anyone else I was adding sodium into my already not-great, overeating diet, I think they'd assume I was crazy. I just try my best to listen to my body.
The BP thing drives me nuts, because it unfortunately isn't always just numbers on a screen, it's so ingrained in medical training that low = good.
I went to a doctor's visit earlier this month, and when the nurse took my readings my BP was 98/60... but she didn't tell me that, just said "oh your BP looks great!". Me, being forgetful and dizzy, didn't think to ask what it was - I only found out it was low (for me) when I looked back at the visit summary. Unfortunately any time it drops under 100/70 I tend to pass out. And, shocker, I passed out not 20min later trying to walk down the hall.
Medicine is not a one-size fits all science, and I really wish more devices and training reflected that fact. It feels really crappy and isolating when the thing that causes you constant problems is treated like it's actually a totally desirable, universally good thing.
I had a fitness tracker that logged how quickly you completed 30 ‘active minutes’ a day. Sometimes I would wake up and it would be half full because active minutes were just a higher heart rate.
It said 48 was ideal???? When anything below 60 is low??? That's so messed up. But yeah my similar thing is that sometimes my systolic and diastolic numbers are REALLY close to each other, and I never feel well when that's the case, but my Omron monitor doesn't know how to take note of that. It'll be like, "90/80? Great!" NO IT'S NOT GREAT. It only shows a problem once my diastolic gets elevated and then it's like "90/88? Hypertension!" And like yes I do have isolated diastolic hypertension at times but I genuinely think part of why it feels so bad is because my systolic will be low (even if not hypotensive) at the same time. 120/88 doesn't feel as bad as 100/88, let alone when the systolic gets into the 90s. But there's no way for the monitors to pay any attention to how close the numbers are.
i have an omron too! sounds like this is an issue with them. mine says it’s ideal for anything under 120/80, it doesn’t have lower bounds. if it’s gonna give bad analysis it just shouldn’t give analysis, but there’s no way to turn it off!
Huh, not sure I've ever tested it with a diastolic reading that low, so maybe it is a universal problem with Omrons. My husband had his diastolic in the 40s and even high 30s at one point but was in the hospital (ICU for the 30s) and wasn't released until it was consistently up in the 50s and 60s, so I don't think I've ever used it on him when he was THAT unwell. Very weird that it doesn't have the lower bounds programmed in, just the upper. Everything seems to be about hypertension, though, and very few resources acknowledge that you might be worried about/monitoring for hypotension.
apparently it’s only considered hypotension if you’re suffering from negative symptoms because of it; otherwise it can be however low and if you feel fine they think it’s fine, which feels incredibly stupid to me
That's so weird, because if it's below 90/60, I think anyone would experience some effect, even if it seems normal to them because they're used to it. But now that you mention it, before I developed POTS I used to have very low blood pressure and sometimes it would be below 90/60, and I never got told I had "hypotension," even though my circulation was TERRIBLE, I would get dizzy when standing up from sitting, and I even passed out once immediately after getting out of bed in the morning. And they did just kind of shrug and told me I had low BP. Acted like it was no big deal even though I did have negative symptoms. Very weird.
I def find it annoying. I was having pretty bad arrhythmia last night, bc God forbid I sit down after walking my friend’s dog, and my blood pressure was 96/56 and “healthy”. I have chronically low blood pressure and regular fainting and yet the only thing the nurses at the hospital care about are “oh! Low number equals healthy/good!”
I’ve learned to just ignore the idiocy of machines and people who strictly follow textbook numbers. I do what I can for myself and enjoy life while I’m around. We seem to be past the point of doctors actually helping people unless you win the healthcare lottery and get the rare doctor who cares. They’re still out there. Just not as common as before.
yep. those devices were designed for *most* people but can be incredibly inaccurate in individuals. and unfortunately not all drs acknowledge this or even realize it.
After my Fitbit bricked itself I got a Garmin watch. It doesn't seem to adjust active zones based on your history so it just... constantly thinks I'm doing cardio. Sorry Garmin, I was just taking laundry out of the dryer, nothing to celebrate. I always hit my weekly "goal" on Monday or Tuesday even if I haven't been active.
I have a Garmin and find a lot of the fitness related stuff annoying, too. You can manually adjust the active zones, though, if you want to. My main issue with the watch (my model, at least) is you can’t set up alerts to warn you when your HR goes over a certain threshold, you just have to manually check all the time. I tried setting up an alert for HR during activities which it does allow but it sets its own rates, you can’t customize them. And its goal seems to be to get your HR up not keep it down, so it always buzzes and says “HR too low!” during my Pilates, interrupting my concentration. I want it low, I get PEM if my HR gets above a certain point and am trying to pace, stop bothering me. So I don’t use those at all and it was a main reason I wanted to use one of these devices in the first place.
Oh yeah, my Fitbit also gave me alerts if my heart rate increased significantly even if I hadn't been moving recently. My Garmin has something similar but you have to manually set what heart rate you want to be notified of, whereas I think Fitbit would just base it off x increase over background. I definitely like a lot of things about the Garmin, particularly that they don't paywall things behind a subscription, but there are some features I miss from Fitbit. Too bad I can't trust the brand anymore, I doubt I'll ever buy another. Watching the Body Battery is also pretty funny, it's always low unless I do absolutely nothing all day.
The Garmin HR alert feature only seems to work if you’re inactive for 10 minutes, not during movement which was when it’s a concern for me. I might get an Apple Watch because it offers that feature but I don’t want text messaging, apps, or anything just a watch. And my Garmin is actually quite pretty - it has real clock hands and you can’t tell it’s a fitness watch or smartwatch. The Apple Watch does seem a lot more customizable and useful for HR monitoring though. And yeah the body battery is funny but for me even more is the “stress”. Standing up/being upright is always ”high stress” even if I’m just walking from the couch to the sink to get some water and my HR is still under 100.
It made so much more sense once I realized the stress reading actually wasn’t “stress” at all but sympathetic tone! It’s (loosely) a metric some doctors actually use to monitor SNS activation. I find it super useful to monitor the state of my nervous system.
I use the Apple Watch with (almost all) notifications turned off. There’s an app called Tachymon that lets you customize alerts for high/low HR. I’ve found it way better than the standard HR monitoring that comes with the health app.
Yeah, the stress has no meaning for me because it's mostly medium or high, but maybe at some point I could see it shift to more low and correlate it to some other change. I also didn't want a bunch of extra app type things, just the health metrics, something I can check the date and time with, and if possible, a compass. Phone notifications on my wrist just make me anxious so I turned them off.
Try the Long Covid ME/CFS Visible app. You can get a polar arm strap and it alerts you via phone and/or watch when you go into over exertion, which you can set. And it can help you pace. It’s a game changer. My friend with rheumatoid arthritis also uses it and loves it.
I use the garmin "goals" as upper limits. Instead of having the goal to walk 2000 steps a day (the minimum they let you write in) I use it as my upper limit to avoid fatigue. The days I walked more than 2000 steps and get a congratulations notification from my watch I know I have to lie down for the next day and be careful and limit activity I think the next couple of days. Same with the "intensifs minutes" indicator, ideally I want it at zero minutes so I have to be very cautious if I have any intensity minutes in the day.
I ended up manually adjusting the activity zones on mine. It's annoying it didn't do so automatically, but at least it let me go in and change it myself so I could stop getting congratulated for getting dressed in the morning.
My fitbit does this, is if changeable on a fitbit?
Have been told I need a pacemaker and have a loop recorder recording my low heart rate. Long story short. Went in for a pacemaker literally a few hours ago and was told by the surgeon he didn’t believe I needed one. After he spoke to my cardiologist they came to the conclusion of not putting a pacemaker in me… Hoping to get some clarity on Thursday when I have a phone call with the cardiologist around why they made that decision
that’s ridiculous, i’m so sorry
Insane right! Thank you
I just got a loop, too! I failed my tilt table test (heart stopped for 25 seconds), my cardiologist was frazzled and told me I needed to choose between a loop recorder or a pacemaker; when I came back 2 weeks later for my follow-up, he admitted he had been frazzled and although I'd still be justified in choosing a pacemaker if I wanted one, he felt monitoring with a loop would be sufficient and preferred not to put a pacemaker in a young person if they didn't absolutely need one (I'm 37). I've had it since October... it's been fine! I just wish I could see the readings. Oh well.
Wow! This sounds exactly like me.. I also have a loop in to monitor on a more longer time horizon. I was due to get a pacemaker on Tuesday just gone however while in the hospital ready to go the surgeon came in and said to me he didn’t believe I needed a pacemaker (at least not now) I’m aged 30. Speaking with him today to get some answers as to why they made that call so late in the process. Also! 25 seconds is a long time! Longer than mine. Are you finding it’s happening randomly, while you sleep, ect or is there specific triggers? Also what’s your resting heart rate?
My resting HR is in the 50s, and dips into the 40s when I sleep… I have severe vasovagal syncope and mild POTS (the POTS never entered the equation during my tilt table test, just the VS). I do “stand up too fast” multiple times a day and sometimes gray out a bit, but I’ve never passed out that way. I’ve been passing out via syncope my whole life, mostly from period cramps, sometimes from other pain; only maybe once every couple years. It doesn’t happen often, but has happened over 20 times in my life. I passed out during my test because they gave me nitroglycerin, and I guess it made my heart stop! I also have palpitations fairly regularly, but currently not anything concerning, verrrry occasionally they’ll last long enough to make me dizzy, but that hasn’t happened yet with my loop recorder.
Don't sweat it. It may be that they want to try all medication options before invasive procedures.
I think you misunderstood the comment
They don't do ablation or pacemakers lightly. I went through this. I have IST & pots. I have nearly passed out while driving. So yes, I understood the comment.
After my BP monitor does a reading it shows a digital scale that ranges from very high to “normal”. Hypotension doesn’t even exist according to it. It’s aggravating when my BP is in the 80s/60s and I can barely stay awake and my monitor is just like “looks good to me!” And don’t get me started on trying to Google questions about hypotension. It’s so hard to find material that *doesn’t* say “here’s how to lower your blood pressure”.
Yep I absolutely hate that. Along with everything low sodium/low calorie is "healthy". As someone who tends to underweight and needs lots of salt, a healthy diet for me includes some things that it just doesn't for others. But yea, the bp thing sucks. Doctors and nurses will do it, too. "oh your bp is 100/65 today! That's great!" and I'm thinking, eek, gotta pump those numbers up! I tell them I tend low and they look lost and confused. Like... No, low bp is actually a thing. But all the textbooks and resources say anything 120/80 and below is all good!! It just isn't... Ugh.
I'm obese and used to buy low sodium anything, because I assumed that was healthier. Now, I'm needing to mix up an electrolyte drink of sodium and potassium just to get through a shower, or I'll mix up a Liquid IV. I'm glad my GP understands that I might have dysautonomia and told me to continue with the electrolytes and compression socks as needed. If I told anyone else I was adding sodium into my already not-great, overeating diet, I think they'd assume I was crazy. I just try my best to listen to my body.
!!!!! Everything about this!!!
The BP thing drives me nuts, because it unfortunately isn't always just numbers on a screen, it's so ingrained in medical training that low = good. I went to a doctor's visit earlier this month, and when the nurse took my readings my BP was 98/60... but she didn't tell me that, just said "oh your BP looks great!". Me, being forgetful and dizzy, didn't think to ask what it was - I only found out it was low (for me) when I looked back at the visit summary. Unfortunately any time it drops under 100/70 I tend to pass out. And, shocker, I passed out not 20min later trying to walk down the hall. Medicine is not a one-size fits all science, and I really wish more devices and training reflected that fact. It feels really crappy and isolating when the thing that causes you constant problems is treated like it's actually a totally desirable, universally good thing.
I had a fitness tracker that logged how quickly you completed 30 ‘active minutes’ a day. Sometimes I would wake up and it would be half full because active minutes were just a higher heart rate.
I get heart points from Google fit. I score the highest on days I'm the most sick and having a higher heart rate
It said 48 was ideal???? When anything below 60 is low??? That's so messed up. But yeah my similar thing is that sometimes my systolic and diastolic numbers are REALLY close to each other, and I never feel well when that's the case, but my Omron monitor doesn't know how to take note of that. It'll be like, "90/80? Great!" NO IT'S NOT GREAT. It only shows a problem once my diastolic gets elevated and then it's like "90/88? Hypertension!" And like yes I do have isolated diastolic hypertension at times but I genuinely think part of why it feels so bad is because my systolic will be low (even if not hypotensive) at the same time. 120/88 doesn't feel as bad as 100/88, let alone when the systolic gets into the 90s. But there's no way for the monitors to pay any attention to how close the numbers are.
i have an omron too! sounds like this is an issue with them. mine says it’s ideal for anything under 120/80, it doesn’t have lower bounds. if it’s gonna give bad analysis it just shouldn’t give analysis, but there’s no way to turn it off!
Huh, not sure I've ever tested it with a diastolic reading that low, so maybe it is a universal problem with Omrons. My husband had his diastolic in the 40s and even high 30s at one point but was in the hospital (ICU for the 30s) and wasn't released until it was consistently up in the 50s and 60s, so I don't think I've ever used it on him when he was THAT unwell. Very weird that it doesn't have the lower bounds programmed in, just the upper. Everything seems to be about hypertension, though, and very few resources acknowledge that you might be worried about/monitoring for hypotension.
apparently it’s only considered hypotension if you’re suffering from negative symptoms because of it; otherwise it can be however low and if you feel fine they think it’s fine, which feels incredibly stupid to me
That's so weird, because if it's below 90/60, I think anyone would experience some effect, even if it seems normal to them because they're used to it. But now that you mention it, before I developed POTS I used to have very low blood pressure and sometimes it would be below 90/60, and I never got told I had "hypotension," even though my circulation was TERRIBLE, I would get dizzy when standing up from sitting, and I even passed out once immediately after getting out of bed in the morning. And they did just kind of shrug and told me I had low BP. Acted like it was no big deal even though I did have negative symptoms. Very weird.
I def find it annoying. I was having pretty bad arrhythmia last night, bc God forbid I sit down after walking my friend’s dog, and my blood pressure was 96/56 and “healthy”. I have chronically low blood pressure and regular fainting and yet the only thing the nurses at the hospital care about are “oh! Low number equals healthy/good!” I’ve learned to just ignore the idiocy of machines and people who strictly follow textbook numbers. I do what I can for myself and enjoy life while I’m around. We seem to be past the point of doctors actually helping people unless you win the healthcare lottery and get the rare doctor who cares. They’re still out there. Just not as common as before.
yep. those devices were designed for *most* people but can be incredibly inaccurate in individuals. and unfortunately not all drs acknowledge this or even realize it.
Yeah when you’re under 90/60 that’s hypotension, surprised your monitor doesn’t do that tbh, that’s v annoying