Exercise and heart rate

[Mikayla]

Hi,

I also have adrenal fatigue and recently heard of people using heart rate monitor's to manage appropriate exercise levels. I am not sure if this applies to POTS too?

I am curious what kind of exercise you or your doctors suggest. I usually can manage a 15minute walk or some gentle pilates or stretching, sometimes more or less... Some days i overdo it and then pay the bedridden price for days afterwards ... But i dont want to let that put me off. Its easy to get scared of overdoing it and then avoid exercise and contribute to deconditioning.

Any advice on how to know when your doing too much? Do you use a heart rate monitor or any other method to measure your ability for that day or do you just try to 'feel' how much is enough? I didnt realise it at the time but i used to be quite fit (exercising everyday as well as being a massage therapist.) . So i really miss the endorphins from fitness and i am keen to avoid further deconditioning. I am booked into a POTS exercise physiologist but have to wait till next year so any advice to tide me over till then would be helpful. 

Thanks 🌻

[StayAtHomeMom]

I personally don't do any exercise. I had issues before my POTS onset with exercise intolerance so I don't bother. That being said, I work part time and have am upright most of the day. And honestly sweeping my back patio is enough exercise for me. I do physical therapy at my chiropractor that might count. 

I have a Garmin HR that is use daily to help monitor whether I am over doing it. Usually my symptoms will warn me, but periodically throughout the day I check my HR to make sure I am not over doing it. If I keep my HR under 140 I don't usually feel it the next day. 

[p8d]

My neuro has me following a modified Levine POTS protocol.  I am sure you can find information on it if you google it.  I work with a physical therapist and have for two years.  I have modified the recommendations to what I can handle without causing days in bed afterwards.  I basically do aerobics (stationary bike and rowing machine) three times a week, balance training twice a week and strength training three days. I do this at home.  At PT I do strength training and a treadmill.  It’s taken years to figure out my limits but I build in rest days for when I have to go to Dr appointments, PT, other appointments (dentist etc) and visitors.  I am housebound.  I know I have overdone it usually when the fatigue hits which for me is a day or two later which isn’t helpful at the time.  I agree that exercise is really critical and helpful.

[bombsh3ll]

I wear a HR watch (Polar, with a chest strap - I haven't found wrist monitors accurate) most of the time, but when I am "exercising" (or doing anything really) I go more by how I feel than my HR. 

I don't always find that my HR/BP correlate very well with how I feel, for example I can be sitting with perfect numbers and be extremely lightheaded. When I get on my treadmill to walk (speed of 5km/hour), my HR will be about 100-110 but walking is much harder for me because it is upright than pedaling my recumbent bike, when my HR can be up to 140 but because I am sat leaning back it is "good" tachycardia ie what a healthy person exercising would experience and I find that a lot easier and more sustainable for longer. 

So my vote would be go with how you feel and if your body is screaming stop but your HR monitor thinks everything is dandy then listen to your body primarily! On the other hand just to be safe you could set a maximum HR that you feel comfortable with or your doctor if you have a decent one advises or look at age based charts etc and slow down/stop if you hit that limit. 

One of my older Polars used to beep if my HR went above about 122 - I had to climb steps to get into my son's school for parents evening once and it went off the entire time I was speaking to the teacher!

B x

[StayAtHomeMom]

2 hours ago, bombsh3ll said:

I wear a HR watch (Polar, with a chest strap - I haven't found wrist monitors accurate) most of the time, but when I am "exercising" (or doing anything really) I go more by how I feel than my HR. 

I don't always find that my HR/BP correlate very well with how I feel, for example I can be sitting with perfect numbers and be extremely lightheaded. When I get on my treadmill to walk (speed of 5km/hour), my HR will be about 100-110 but walking is much harder for me because it is upright than pedaling my recumbent bike, when my HR can be up to 140 but because I am sat leaning back it is "good" tachycardia ie what a healthy person exercising would experience and I find that a lot easier and more sustainable for longer. 

So my vote would be go with how you feel and if your body is screaming stop but your HR monitor thinks everything is dandy then listen to your body primarily! On the other hand just to be safe you could set a maximum HR that you feel comfortable with or your doctor if you have a decent one advises or look at age based charts etc and slow down/stop if you hit that limit. 

One of my older Polars used to beep if my HR went above about 122 - I had to climb steps to get into my son's school for parents evening once and it went off the entire time I was speaking to the teacher!

B x

I wish I had setting where my garmin would tell me it is high. Sometimes I don't pay close attention and I pay for it. 

[statesof]

The only way I have found that I 'overdo' something physically or do something that my body cannot do is the symptoms I get after doing it, and their usually pretty severe.

As far as exercise, and this is kind of different from most with POTS, I have found that if I try to do something 'lightly' or go easy on exercise and only do a few minutes then it is immediately horrible for my body, but if I do a cardio exercise where I keep my bp up the whole time and go for at least a moderate amount of time (15-25 minutes) then I feel pretty okay afterwards and can do it sustainably. I can't do any exercise routine that has breaks in it, and cannot do anything with weights. With my body I'm pretty much either sitting or jogging/ bicycling with not much room in between.

[Mikayla]

Thanks everyone,

I think i will explore the heart rate monitor idea and see if it helps, and also look into the levine protocol. Its interesting how different we all are.

At the moment i find it hard to decipher what exacerbates my symptoms or brings them on... And then once i feel anxious and depressed about it all it seems that feeds into it too. Feels like being trapped in a maze sometimes!

If anyone else finds it interesting, I just found this website , although its for cfs i think it could apply for PoTs people too. Even if all you can do is diaphragmatic breathing it will help. 

http://cfsrecoveryproject.com/how-to-benefit-from-exercise-even-if-you-have-chronic-fatigue-syndrome/

Best wishes everyone 🌻

[Lily]

I guess it depends on your own level of functioning and exercise intolerance.  I use healthy-person perceived exertion guidelines, because I am not so badly off that I can't exercise however I want to.  Others will need to monitor heart rate more precisely.

[jvherenow]

I have adrenal fatigue and POTS. I got a little finger HR/O2 monitor that I used to take with me when I started trying to walk again. At first I could only go 5 minutes but I just did that for 2 weeks until my HR wasn't hitting 160. Then, I went to 10 minutes. I tried to walk slowly enough so that my HR stayed below 150. I did that for 2 weeks. I kept adding 5 minutes about every two weeks and keeping my eye on my HR whenever I felt extra dizzy (I was always dizzy back then). After a while, I didn't need to take the HR monitor with me anymore because I felt stronger and was more confident that I could guestimate my HR based on my felt experience. 

Before I felt good enough to walk, all I could do was lie-down yoga/PT. As long as I didn't have to lift my head up, I could do some things. As soon as the head went up, forget about it!

Just keep trying to do what you're able to do, even if its only lifting your legs up and down in bed throughout the day. Just do as much as you can each day and then add more when you're able. Don't be too greedy to run marathons again and don't let yourself do nothing...there is always something we can move, even if it's only our pinky

Also, if you can, find an integrative MD to see. I think her crazy supplement routine is what allowed me to get out walking again. She found so many small deficiencies that the big hospital doctors completely missed and I am dramatically more capable after months of her care. 

Hope this helps.