I'm looking for someone who keeps track of their heart rate with a heart monitor.

Thanks, I understand how POTS can be ridiculously difficult to manage. I'm not as seriously hindered so I'm looking at a wristband called Mio Alpha which continuously reads the heart rate so it's very convenient.

Yes my heart rate jumps around a lot. Just now it was 70 when sitting and then when I stood up and walked around it went to 100. I also had it measured when I was sleeping and it went as low as 40. I don't know why it still jumps up so much even though I am on medication. 

No, my resting pulse is 66. 96 is supposed to be my max heart rate that I should allow myself but I do go over it. The idea is to be aware when I go over it and I can be more mindful. I have a mio alpha which I wear around my wrist and it gives me a continuous heart rate. No need to push buttons or wait for a reading. It's really wonderful. I haven't been diagnosed with POTS but my heart rate can be pretty wonky at times. I think I'm finding some patterns when it gets wonky. I am too sensitive to do any medications (or even some holistic remedies) so I need to do everything naturally.

the rule of thumb is 200-your age=max rate. Your heart is 104 years old!

Good idea to get a fitbit that saves your max.

Then you can see when you are asleep, how high it gets!

If it goes to say, 120, then you know your Dr is wrong about your max.

Many  die of a heart attack between 2-4 am due to the high rate. Alarm is a GREAT idea, it could save your life!  as soon as the alarm wakes you up, rate comes back down quickly. 

Keep us posted! Hope dr. is wrong and you are not that bad!

No,  Im doing the heart rate monitoring program that is recommended for people who have CFS and want to heal. If you look up "Pacing by numbers" they explain everything about the anaerobic threshold for someone with CFS as opposed to someone who doesn't have CFS. It's about staying within your energy envelope to avoid crashing thus being able to eventually heal. Maximum heart rate has often been calculated as 220 minus age times .6. Using this formula, a person who is 50 years old would have an anaerobic threshold around 102 beats per minute: (220 - 50) x .6.

I would give you the names and sites of the people who recommend this program (along with a 64 page document of doctors who specialize in CFS patients who also recommend it) but the moderator won't allow  me to.

This is what I'm doing in a nut shell.  "There’s some research which suggests post exertion malaise (the cardinal symptom of ME) occurs, or worsens, in response to exercise and that it may be lessened or avoided by maintaining a lower heart rate. This may explain, at least in part, why people with ME cannot tolerate exercise. So theoretically, by keeping your heart rate down to around 50-60% of maximum you have less symptoms. Or to put it a better way, you can avoid an increase in symptoms. This may still be difficult, or in fact impossible, for some sufferers as their resting heart rate is already close to that 50-60% range and very minor activity, something simple like standing up may push the person over it, but for some it may be possible."

Thanks for your reply. i'm new here so i don't know your program. I had CFS for 30+ years, and i just broke the spell last week! i figure everybody has different genes, so anything is possible. You and I are totally different.

  My idea was to raise my pulse so the toxins could be removed.  With a higher pulse, i can recover quickly. BUT i don't sleep half as much only 4 hours, yet i can do 5x as much. DR did 3 EKG's and my heart is fine. i'm 65 with 122/70 BP.

After a week of catching up, i did crash today after 1 hr of work. i was in bed all day, and thought i'm done for today. Then after dinner i felt better and washed my car by hand, pulse 110. Now i feel good again. This is best week in at least 15 years!.

So my Q is, does your program have a list of successful cases? It sounds like baloney to me.

haha... yes, there are lots of success stories but if you can crash and then get up later and wash your car than you are doing quite well!! This program is for people who aren't seeing that kind of progress yet. By starting out low and slow, one can steadily increase the threshold but it takes time and patience. It's amazing to me how CFS is very personal and how one person's poison is another person's medicine.

for 30 years i used the pace myself method at home. say i want to clean the kitchen, and it takes a half hour. i'd work 5 min, lie down 5 min, work 5 min, lie down 5 min... so it would take 1 hour and that is how my day went at home. But when i would go out for food there is no place to lie down. I'd be back in an hour, but i'd be wiped out the entire next day! Finally, 4 years ago i built an electric scooter and rode that in the store, and avoided being wiped out. 

I also did weight exercises at home to avoid muscle and bone atrophy. Only 1 minute of squats with 20lbs, for example. This is very important and that did put my pulse up to 100-120 briefly. This strength training is very important as i feared i'd soon end up in a nursing home. So now with my recovery, despite being down to 124 from 154, i can do normal activity.

Good Luck!

Matt

I'm also doing strength training with very light weights right now. I've never been able to do even light weightgs before without eventually messing up my body. This method seems to work for me. Glad you're doing so well. I've only had CFS for 3 years tho I suspect I had it all my life. I was a dancer and didn't realize that I was hurting my body.

I'm usually 107-128 making breakfast. if i lie down it drops quickly.

What is it before you get out of bed, awake for 5+ minutes?  Mine is the highest in the morning. When i see it up it is time to get out of bed.  If i go for a walk just 1 minute, surprisingly it often DROPS!

High all the time 100+ can be hyperthyroidism. Hard to gain weight. Loss of appetite. anxiety.

Hypo is LOW and easy to get fat.

Thyroid has to be just right, not too little, not too much. Either is very bad.

Interesting that you easily suffer muscle injury, me too! I've had carpel tunnel, shin splints, tennis elbow, back, foot, shoulder pain, you name it i''ve had it. and Once i get it, it would not go away for years! Worst was tennis elbow, had to use an electric scrubber in the shower to avoid pain, for 13 years. I was trying to eat healthy and 1 item was missing from my diet for 30+ years! 3 years now with the USDA recommended diet and any pain usually is gone the next day. not using the scrubber for 3+ years!  

I think these problems are related by our genes.

So i got out of chronic pain prison 3 years ago, and CFS 8 days ago! I feel like i won the lottery! LOL

My chiropractor says Im definitely hyper thyroid. I'm 95 pounds soaking wet and I'm about 5' 4". I eat a LOT but I have to stay away from dairy, gluten, etc. My metabolism is ferocious.. It's wierd cuz my blood tests show that I'm hyPOthyroid. I have shoulder pain and i use to use an electric wallpaper remover to get the muscle to loosen up! LOL. Today I got a massage. OMG... it was amazing.

My heart rate before I get out of bed or when I'm meditating is about 67. Good to know that it's normal  to go up when I get out of bed. When I go for a walk it goes way up unless I slow down a little.

when you get up your body wants info on how to set the heart rate. walk fast for a fast rate, walk slow for a slow pulse. it is as simple as this.

Yes, well before I started doing heart rate monitoring my inclination was to do everything at an accelerated pace and I wasn't even conscious of that. This has forced me to slow down so that I'm not so manic. I body is feeling calmer.  I'd rather not send a picture.