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Exercise Thread


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Hello all, since exercise seems to be at least one component of getting better I'd like to make a thread where people discuss their exercise regiments, the progress (or failures) they've encountered and a place where we can support each other to stick with our goals.


I'm just beginning my exercise regiment over again. In theory what we're trying to do is mimic marathon runners. Several studies such as this one http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1498337/pdf/bmjcred00606-0026.pdf

show that for fit athletes, their resting heart rate goes down significantly. (In the study, some of the most fit athletes have resting heart rates of 30-40!!)

I'm not sure why this is but my biology professor remarked that their venous return gets to be so strong that the heart barely has to lift a finger to get the blood back to itself.

Unfortunately it seems like it takes rather high levels of fitness to achieve some of the lower heart rates, but in theory it should work for us.

I think the major areas to target is aerobic exercise for general fitness and then weight lifting for the calves + thighs as well as daily abdominal workouts. Working out the abs should have the highest effect since this is where most of the blood pools in OI patients such as ourselves.

Hope to hear from you and remember,

get better!

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Ive exercised the whole time that I have had POTS.

My initial fitness regime was pretty pathetic because I had no idea what was wrong with me and consisted of short nightly walks. I improved over time either way.

After my second relapse I thought Id try to exercise it away - this was before any suggested that it was a good idea or anything. I found that I improved with exercise and licorice very quickly. I started with short sprints and then built it up with swimming, pushups, chin ups and running. I even joined a soccer team and played for a season. People always commented how fit I looked and I definately felt better and functional - but never back to normal no matter how hard I exercised.

I still dealt with crashes of fatigue without dizziness and low energy.

Then I had my mega relapse of 2008 after a great overseas holiday. I tried exercise but got rebound after effects, I tried small exercise and very slowly built it but even when i was back to running 2kms I was still very potsie some days at work. Finally when I moved up into the mountains and started gardening and heavy labour I could feel my strengh come back and I felt myself again at least to some degree.

Exercise definately helps but at laest in my case it does not afford protection against relapse. I ran 5kms twice this week and just fainted today and yesterday out of the blue. confounding illness!

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Sorry to hear about your relapse, I'm not too familiar with waxing and waning POTS as my symptoms have been pretty much constant over the 6 year period.

It is great though to hear your positive experiences with exercise. I hope that I can titrate up my workouts to where I'm seeing benefits as well although I expect it's going to take several weeks.

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i try and walk every day, even if its for 3 hours at night solid, or half an hour in my living room, has to be done. Only thing i have noticed is that walking for 30 minutes twice a day is as effective as once for 2 hours.

I also do light weights when i can, or exercise 1 muscle group each day.

I have noticed though i have lost a lot of weight, im a guy down from 13 stone to 10.5 stone in about 3 months. steady state cardio burns fat alright, but realising with pots it might be better to have a little fat left on you so when GI issues hit you dont lose even more weight!

Seeing my EDS doctor in early Jan, and want to ask about getting back to heavy weights! I used to be a 14 stone body builder and i miss it.

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Hi Jangle,

Yes, exercise is recommended by many doctors for POTS/dysautonomia patients. Please remember, however, that approximately half of the members of the Forum don't suffer from continual hypertension, but hypotension as well. I try to do 30 minutes of aerobics 3-4 times a week, along with abdominal work, and my doctor suggests that any weight work we can do on our legs (where a lot of people also pool blood), especially the lower legs, is also of great benefit.

Thanks for bringing up exercise and getting enthusiastic about it. If you'd like to get a group together to support each other for exercising, you may want to start something on facebook, if you belong...



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