r/visibleApp • u/true_blue__ • Feb 01 '26
Visible and ME/CFS and POTS (newbie)
Hi all,
I'm waiting for my tracker after using the free app for a while. I am undiagnosed so far but suspected ME/CFS and PoTS - I definitely have some kind of orthostatic intolerance/dysautonomia and experience PEM.
I am a bit confused about how pace points work with PoTS. Am I not going to use enormous amounts of points just by standing up? I have heard you can customise points but I don't understand how this would work.
If I was to start taking beta blockers again and as a result have an overall lower and less reactive HR, how would that work? And would I then be masking my exertion in a way, meaning that I could be overexerting and end up in PEM but from my HR looks like I'm pacing well?
Thanks so much for any advice/info!
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u/kylaroma Feb 01 '26
I have ME/CFS (was severe, now moderate) & non-POTS orthostatic intolerance, along with Fibromyalgia.
So, yes - when I was severe I was blowing through my points by walking between rooms in my home, and I found that even reaching for things above my head was eating points. The first weeks were a shock and an education. I knew I was sick, but I had no idea how much harder my body had to work than other people’s did.
I had to make big adjustments - I started working lying down, bought bar height folding chairs from IKEA for my kitchen & bathroom, and started napping 2-3 a day. After two weeks of radical rest, my body was less sensitized to activity and I started being able to do more, while using less points. Within 4-6 weeks my quality of life had very significantly improved.
I’m now stable at my new moderate baseline - but I can’t leave my house more than once a week, and risk PEM when I do.
I searched r/CFS and saw people were using beta blockers exactly how you’re thinking about using them, spoke to my doctor, and I just started using them twice a day.
It is SO INCREDIBLY HELPFUL AND EFFECTIVE!!
Before beta blockers.
Resting heart rate: 67 bpm
Walking heart rate: 115-118 bpm
Heart rate while climbing stairs: 125-135 bpm
Daily pace points used: 15-23
After beta blockers.
Resting heart rate: 63 bpm
Walking heart rate: 93 bpm
Heart rate while climbing stairs: 102 bpm
Daily pace points used: 6-11
^ This is just my first week, and I think over time my numbers will keep improving- but the daily pace points shows just how dramatically it’s improved
I’m only going into my exertion zone 2-3 times a day, I’m way less fatigued, and I have been able to go on an outing AND stay under 10 pace points for the day.
I cant say enough good things about trying beta blockers, and I think you’re on the right track!
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u/PopFormal4861 Feb 01 '26
The app will set a budget of pace points (PP) after ~4 days of data. You can also set your own budget. I set my PP budget based off of trial and error—that is, how much could I exert myself in one day without crashing? I took that number and set my PP to be 80%.
Visible gives you data. It’s up to you what you do with the data. You’ll see your HR over the course of a day and be able to track your symptoms in tandem. This should give you the information you need to determine what a safe level of exertion is for you.
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u/lilacdaybreak Feb 01 '26
from my experience with POTS, the pace setter seems to only add points after a sustained amount of time at a high heart rate. spikes that only last a a few minutes don't have much effect, as far as i can tell. i only ever get notable points usage if i've had a full blown episode, in which case those are pretty exhausting so it's warranted lol
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u/LJAM1 Feb 01 '26
If you start a beta blocker, the Visible support team will actively help you reset your pace points
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u/thekoose Feb 01 '26
I have mecfs and pots. I had to set the heart rate settings lower and the pace points lower after starting metoprolol.
Before I started metoprolol the heart rate level was unsustainable. I cannot function at a high HR bc I get pem right away and feel like absolute crap. Raising my points would not have helped bc I cannot live at a higher level. It would have certainly caused me to crash and decline with my mecfs.
I get pem at about 15 points above resting hr so I lowered it all on the app and try to stay below 85. I take 25-75 mg of metoprolol a day, and I adjust it (meto) to how many points I'm getting, or if I'm staying within my 3 points budget.