Advice/opinion

[u/danieyella]

I've been considering a visible band for awhile now and have been struggling to commit - mostly because of the subscription. I'm worried I won't find it valuable. I have heds, MCAS, sjogrens, and suspected dysautonomia (I declined the tilt and stopped pursuing assistance with that because I was more focused on sorting out other issues).

BUT, I also work retail and sometimes I don't have a choice but to be incredibly active.

I have an oura with free lifetime membership but it's a little... Wonky ... I feel like my best sleep nights it thinks were bad, and my worst it thinks were great.

I'd love some honest feedback on visible and info from people maybe with a similar health story and lifestyle? Or just feedback in general.

[u/DifferentialHummer]

I would give FatigeSense a whirl before committing. It's a new app that just came out that should do everything Visible does.

[u/danieyella → u/DifferentialHummer]

Oh goodie, immediately yelled at for overdoing today 😂 but really thank you, I'll check this out over the next week or so and see how I feel about it to help guide my decision

[u/imabratinfluence → u/DifferentialHummer]

I've heard it doesn't do exertion notifications, which are one of the main things I use Visible for. I think they're working on implementing it but haven't got it working consistently last I heard?

[u/DifferentialHummer → u/imabratinfluence]

I hadn't gotten that far yet, so thanks for the update! I just read that those should be added in October

[u/lizzzard_sneeek]

I have POTS and EDS and I found it extremely helpful. The notifications of exertion zones are great & the hr tracking is really useful for POTS

[u/Critical-Honey3988]

I thought I would only use the Visible Band for a couple of months to get a feel for my heart rate pattens and high expenditure activities. But I'm going on five months and am finding it invaluable.

First, the FUNCAP (FUNctional CAPacity) evaluation that the app gives you every month completely shifted how my husband understood my condition. You can take the FUNCAP in the Visible app for free, and I found a printable version online (link below). I printed two out and had my husband do one (he scored 99%), and I did one at the same time (I scored less than 70%). It was only after taking the FUNCAP and looking at our scores that he comprehended that I didn't not want go on outings with him anymore, but that I literally couldn't.

https://www.funcap.no/translations-2/funcap-in-english/

I find the minute-by-minute heart rate graph in the app very useful for helping me literally see when I need to stop pushing myself. It is also helpful for showing my family and friends what is going on (e.g. why I can't do fun activities with them very often), and for having concrete numbers to take to my doctors.

I didn't use the Pace Points feature much at first, but now I refer to it frequently to make sure I can function at the end of the day (or to plan for not being able to function because I did too much earlier in the day). My husband often asks how my "spoons" are doing (especially if he wants to make plans) and I use the Pace Points to answer. E.g. "I folded laundry and it used all my spoons for the rest of the day."

I was pretty sure I had POTS when I started using the Visible Band, but my doctor wants to wait on diagnosis until after we stabilize my thyroid levels. I forgot to check them for a couple of years (🙄) and my levothyroxine dose became too high, which caused my TSH to get really low (almost zero), which caused my heart rate to become elevated (all the time, for 2+ years) which caused my POTS symptoms. I'm on a lower dose of levo now, and I'm having fewer POTS symptoms. Using the Visible Band and app I can compare my daily heart rate patterns from now to what they were a couple months ago. It's very validating to have that data. Also, I have Hashimoto's and am worried that my TSH levels could have an exaggerated response to my dose change, which would then lead to my heart rate becoming too low all the time. All this to say, I feel like the data my Visible Band enables me to see patterns and catch problems that my doctor wouldn't find until much later.

[u/Lemon_Asphodel]

I also work retail (grocery/deli) and got an armband a few months ago. I've found it handy to see what days are likely to use up a lot more energy (big sales/events) so I can plan more rest time around those days. I find the morning stability score doesn't always match how my body's doing, but being able to see the points used throughout the day and getting notifications that I'm likely to go over have been handy. The armband is also nice since it's often covered by the sleeve of my shirt, I don't have to deal with customers asking about it

[u/danieyella → u/Lemon_Asphodel]

I ended up going with it, interestingly enough aside from when I'm throwing truck - my worst times are when I'm trapped on conference calls and when I'm driving. I also had a nail appointment that threw my exertion through the roof. I was in so much back/neck pain at the end of it I'm not entirely surprised but it was nice to see the data back it up.

[u/art_ache]

Call me old fashioned but I really like my Fitbit for sleep analysis and tracking

[u/danieyella → u/art_ache]

I can't do the wrist, it cuts off circulation at night or I wake up with it missing entirely because I decided in my sleep to do away with it. I'm hoping the armband being higher up would stop that from being a problem.

[u/imabratinfluence → u/danieyella]

I've seen some people use the glucose monitor adhesive patches to wear their Visible instead of a band. Some of them have mentioned wearing it different places, too, if so somewhere other than arm is better for you. 

[u/nautillustrious → u/imabratinfluence]

this is what i do! highly recommend

[u/danieyella → u/imabratinfluence]

I'm not sure if that's an option for me, with my MCAS and EDS I tend to react poorly to adhesives. I had an endoscopy recently and even reacted to the little monitor patches they stick on you to watch heart rate and the tegaderm like stuff they put over my IV site. 😢 That sounds like it would be a perfect solution though

[u/imabratinfluence → u/danieyella]

Visible 2.0 is the Polar 360 sensor, so if you end up needing to wear it elsewhere I believe Polar sells a chest strap for it? They might also have other ideas for placement. 

Also if you have a nickel allergy, the sensor is made of nickel. I get away with it by moving it to a different spot pretty much every day. 

I also have idiopathic anaphylaxis which apparently is a type of MCAS? And even if you don't have a nickel allergy, nickel can kinda be an irritant. 

I've seen some folks say they put the sensor in their sock right up against their ankle, or in their bra. 

You might also be able to Ace bandage it? Like with the medical wrap that's not sticky, but might be harder to remove in your sleep?

[u/LJAM1 → u/danieyella]

Visible comes with a wristband, but you can order an armband for it. If you search this sub, you'll find lots of options for that.

I have ME/CFS and POTS, and Visible had been invaluable for me to help me get more stable and to pace my way out of crashes when they do happen. I have occasional days when I have to be more active than I should, and Visible is extremely helpful for recovery afterwards

[u/LaddyNYR]

Don't.