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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Trusting the Numbers
- Author CoolBreezes
- Create date
- Updated
Today I used my heart rate to uncover something that was causing me trouble.
For the last few days, my heart rate has been unusually high, and my HRV (both moment-to-moment and my morning reading) has been lower than usual.
I felt normal, but whatever I did, my heart rate would trend steadily...
Tracking the heart rate has amazing power!
In the beginning, I knew that I should try to keep my heart rate below my anaerobic threshold. But beyond that, I didn’t know what my heart rate really could show me. I spent more time looking at HRV, which seemed more interesting and useful. And it...
Sorry about vanishing!
I realized that I needed to rest more than I had been. The effort of writing these blog posts became something that I couldn't do for a while. I've been spending the time learning to rest better, tracking down food reactions, and other things.
At the moment I'm...
Step 1: Getting out of PEM and moving toward stability
Brain fog summary:
I thought I was resting well enough, but I got into trouble anyway.
So when I can, I rest without doing anything else.
I don’t even listen to anything.
I move around when I feel like it, at least every...
[Added December 2022: Since I wrote this I have learned a lot more about how to use the simple heart rate for managing my condition. See entry 7 for details. It's more important than what I've written here.]
Measuring my heart rate does at least two things for me.
The moment-to-moment heart...
It took me a while to figure out what I needed for staying in bed (or in a recliner). My current setup would have made things easier from the beginning.
On the bedside table:
Lamp
Rectangular basket in which I keep:
medication
cloth bag with my devices (thermometer, O2...
I began HRM pacing on March 24, 2022, when I was in PEM again and could hardly walk. Since I (fortunately) don’t have pain, I can (unfortunately) push myself even in deep PEM. My walking pace made a bride’s progression down the aisle look speedy, but I managed to drive to REI and buy myself a...
When I started pacing, I was terrified of my rapid loss of function, so I took quite literally everything that I managed to find. In doing so, I made some mistakes. I hope that others can learn from my mistakes, even though every person’s experience of ME/CFS is different.
I don’t have to be...
When I was looking into starting pacing with a heart-rate monitor, I found too few specifics about exactly how to do it, so I’ll record what’s going on with me in case it helps others.
I’ll assume, here, that you have an understanding of ME/CFS, and that you understand the basics of pacing with...