Health Monitors, Fitness Trackers and other Wearables
Hi folks, I'm looking at getting a wearable to track various metrics in hope of being able to identify trends which may help me pace more effectively and identify when I am at risk of overdoing it and stopping before the PEM crash.
My issue is that most sources of information about wearables is focused on fitness and training regimes not on simply monitoring metrics to manage chronic illness, so I'm having trouble filtering through all the marketing BS to find the technical info which will tell me which devices meet my requirements.
At this point the metrics I'm focusing on are:
- Heart rate
- SPO2 blood oxygen level
- Sleep patterns
Once I have identified any patterns indicating high risk of PEM I want to be able to set notifications to alert me, e.g. if my heart rate goes up past a certain point, or my SPO2 drops below a certain level.
Can anybody in the community recommend any additional metrics people with ME should consider tracking to manage their ME more effectively?
Can anybody in the community recommend reliable and cost effective wearables which will meet these requirements?
river last edited by
@pcmwilliams I am not sure if we are allowed to reccomend specific products here but I will send you a private message with some!
@pcmwilliams I wish I'd asked in this forum before I bought mine, because I've ended up with one that congratulates me for a high heart rate and can't be programmed to do otherwise!
@river There's nothing wrong with recommending specific products that have worked for people - the thing that isn't appropriate is promoting things more broadly, and particularly for personal gain. So "I have/heard X works well" is fine, while "X is wonderful, and if you'd like one, just PM me and I can sell it to you" isn't (which I'm quite sure isn't an issue here)
@bigfish Which is excatly what PWME don't want.
We're not trying to get super fit, we just want to keep ourselves from spending the next week or four confined to bed.
@pcmwilliams there was a thread on here which talked about this. When the search function comes back hopefully it's easier to find! I think some stuff got combined into a bigger thread a while ago...
This lady has severe ME and moderates a few ME Facebook groups. She has a good article about set up and a recommendation for a device she uses. Link here
I think there is also a Facebook group for HR monitoring and maybe a blog bit I can't find it argh! They have a master spreadsheet of good devices.
I have a Garmin Vivosmart 4. I turned off all alerts but it's not great for monitoring with quick feedback and you have to tap the screen to see your HR rather than being able to set an alarm as soon as you hit it. It's ok for me at the moment because I only do very limited activities so I know what makes it go over and I don't need to look.
river last edited by river
Since I know that its allowed now I'll recommend a few devices publicly here..
Garmin Vivoactive 4: has SpO2, sleep tracking, custom heart rate zones (very important for us) and ability to set an alarm to go off at a certain heart rate while you're running an "activity". Also has hydration tracking which I find useful. It's highly customizable but also just works out of the box. Some people find the "body battery" feature useful (think of it like an objective measurement of "spoons", if you know spoon theory) but I'm not convinced it works properly for people like us.
Polar Ignite: very similar to the Garmin Vivoactive in design and features just a different brand. Polar also makes electrode chest straps that you can connect to the watch for more accurate heart rate data (I think it can be connected to any watch that supports a Bluetooth data source though, you don't have to use the Polar watch).
I have used the Vivosmart but the screen is very small, fiddly and unresponsive which is not good for my brain fog. Also doesn't have the alarm, although weirdly I found that when I configured my Vivoactive alarm, that setting carried across to the Vivosmart and it gives me alarms now! It's like they make you pay for the more expensive watch to get that feature on your cheaper watch.
The Facebook group @emsarah mentioned is called "ME/CFS: Below the threshold" but the info there is very technical and overwhelming so I can understand why people would want a summary post instead of looking at a spreadsheet comparing devices!
@river ha that's weird about the Vivoactive transferring it's alarms to the Vivosmart! I could only afford the cheaper one...maybe one day I can get a better one! I agree about the unresponsiveness. Sometimes I have to tap so hard to wake it up
Thank you all for the advice, suggestions, and links.
@pcmwilliams Such a valuable discussion. Thank you for raising this topic.
@river I know I am late to the discussion because I only recently joined the forum. I used to be an endurance athlete and have always used HR at Anabolic Threshold for training and racing. I have always been a Garmin user with a chest HR monitor. Obviously with ME/CFS and a number of other chronic conditions, my last race (possibly the last time I ran) was in 2017. Since I wanted a wrist HR monitor and the purpose was different, I checked out Fitbit, Apple Watch and the Health and Fitness range of Garmin (Venu, Vivioactive and vivosport). I actually disliked all of them because of the touch screen, plus Apple and Fitbit don't give me the HR functionality I need. I then looked at the Garmin Forerunner Series (a sports watch range) which I hadn't looked at because they are designed for sport. The prices ranged from stupid to on par or cheaper than the others. I went with the Forerunner 55. It was affordable (all relative), no touch screen, wrist HR monitor and the functionality I need with a little configuring. I am familiar with Garmin so I can configure it from race mode to spoon mode and I like the Body Battery feature (as a guide - haven't had it long enough to work out accuracy). I haven't worked out if I can put cognitive activities as drains yet.
@hucky that’s very helpful and timely!
I found garmin’s body battery to be a helpful indicator too, and only recently stopped wearing it.
The cardiologist who is helping me manage pots and other heart rhythm irregularities recommended I try one of the new smart watches that take medical grade accuracy ecg and pulse ox measurements on demand so I can send them to him for analysis and regular monitoring.
So far, I am impressed with those features and it puts my mind at ease. However, I miss all the fabulous garmin features. Will look into your recommendation and perhaps wear two trackers, one on each wrist! Haha. I don’t leave the house often so I guess it’s only going to look a bit strange to my housemates!
BTW the alarm in the vivosmart 4 that goes off after 10 mins of irregular hr at rest, was one of the things that helped me get a referral to a cardiologist and subsequent diagnosis. And I’ve handed the garmin over to a housemate who is now currently being assessed for similar, thanks to data it collected for them, that shed light on symptoms that had been explained away by drs as anxiety.
So, in short, I have a great deal of affection towards garmins!
@andie the 'on demand ECG' is a feature I like on Fitbit but I could only get a HR alert after 10 minutes of rest for abnormalities rather than in real time. Forerunner gives me a HR alert in real time during an activity as well as abnormal HR after 10 minutes. No ECG but the Garmin App on the phone gives you a HR graph. There might be an ECG app or widget or whatever they are called. If there is some magic way of recording and managing emotion and cognitive drains as part of body battery, that would be great!
@hucky if I understand your situation correctly, you’d like a way to track drains and triggers against a time line of sorts. I know of one solution. It’s an app called cardiogram. It syncs with the garmin (and other brand) apps, dumps all the data on a timeline each day, that looks a bit like the garmin body battery timeline.
The cardiogram app allows you to add tags and symptoms to the timeline. When you zoom in to do that, it even tells you whether you were resting or moving, and hm steps you’d taken in that timeframe.
It displays all of your sleep data too. And it will make you aware of trends in symptoms, hr, etc. You can also get it to email a report that identifies the most prevalent symptoms. It’s quick and easy to use because common symptoms are already listed so you just tap to add.
You can also add your own custom symptoms, notes etc.
@andie wow, that's a useful sounding app!! I am going to look it up! Then I could take in my stats to my doctor!
@emsarah I hope I explained it well enough and yes, you can email reports to anyone including carers, doctors, allied health peeps.
I think it’s free to try for the first week or so and min cost after that.
Saves me scrawling notes on the bottom of my tissue box in the middle of the the night, only to find them illegible the next day, and unable to remember what happened
Interesting App. Thanks for sharing @andie
@andie thank you. I will check that out now. You have interpreted my ramble correctly.
Bit of an update re the watch I purchased so I could do ‘on demand’ ECG s to assist treating cardiologist. That function was all it had going for it. I won’t mention the brand name here but it’s customer support team were unable to get some broken features to work for me.
Regretted purchase (only did so upon recommendation of cardiologist). The thought of trying to return a faulty ‘smart watch’ was too much!
Then my house mate reminded me that the retailer has a 3O day return if not happy policy, & I qualified for thatThey were absolutely easy to deal with and I replaced it with a different watch with on demand ecg function and other features that are truly smart
It’s a lot of $ to outlay for something that can help manage me/cfs, so I thought it might help to know that this retailer at least, allows you to try for 30 days.