How do you exercise?

[JenniferInOhio]

From everything I read, it sounds like exercise is good for us. How do I do that without my heart rate getting too high?

I'm not sure what to do...pilates? Does anyone do aerobics?

I could take a slow walk, but that wouldn't really benefit my cardiovascular health. I'm not sure what is okay and not okay.

[Poohbear]

Talk with your Dr to get their input.

My cardiologist encourages me to do whatever I can. A slow walk isn't the ideal for a "normal" person however, if it's all you can do and you can do it safely (ie..without passing out) then it will help keep you from getting deconditioned anymore than necessary.

I can't do much....I walk slow if/when I can. Mostly I focus on strength and resistance training. I have a pilates performer and I work on that as well as pilates floor exercises. I also do light yoga to keep muscles toned.

Recumbent bike is also good if you have access to one.

[Ernie]

Hi,

I use a recumbent bike and a treadmill and pace myself.

[michiganjan]

ARe you on a beta blocker? I take a beta blocker and that keeps my heart rate from getting to high when I exercise. Plus I sometimes wear a heart monitor and then I can know exactly how fast my heart is going during exercise.

I agree with other advice already given. Talk with your doctor about how much you should do.

[OCsunshine]

When I was very ill I could do no exercise whatsoever.

When I started to get better I could do simple stretches while sitting or laying down.

When I progressed into a "fairly good" stage I could do pilates regularly.

I have been in periods where I can do some 'low impact cardio' and I have no bad side effects.

To sum up- I think we A) must consult our doctors, and listen to our bodies... not necessarily in that order! ;-) Some docs will say "push yourselves as hard as you can go" but that might not be best for us. I really listen to my body.

Some of us here will probably never be well enough to do real "cardio" workouts. I used to try my mom's "Gazelle" and just after 30 seconds my heart rate would be awfully high and the problem was that my heart rate never returned back to normal- not without a trip to the ER at least. It's like my heart didn't know how to re-set itself. Very exhausting. Very scary.

Take it very easy. Pilates and Yoga are very good places to start. If your doctor approves it, try a simple beginners video and try it. I can do pilates because it's all laying down on the floor and my heart rate rarely gets very high.

[steph37822]

oops

[calypso]

I don't know if this is good advice, but I can tell you what I do: I basically completely ignore my heart rate and go by how I feel. If I pay too much attention to heart rate, I start to worry and not focus on the whole point of exercise, which is to help relieve stress and not be a mental burden.

I go for brisk walks, sometimes jog, jump rope (this makes my heart pound the worst, but it's great cardio), work out on an elliptical machine, ride an exercise bike, swim/tread water, and dance.

If you aren't on a beta blocker and can tolerate one, that ought to help as well. But sometimes then your heart rate can't get high enough to be in that beneficial zone, so you have to talk to a doctor about it. Also, some people develop exercise intolerance when on beta blockers due to the fatigue and shortness of breath they sometimes cause as side effects.

Hope whatever you choose works out well for you!

Amy

[JenniferInOhio]

Wow ~ it sounds like some of you do cardio! I'm impressed and inspired!

I've asked my doctors about exercise and they always say, "Listen to your body - if you don't get out of breath and feel okay - you can do it." I don't really have a problem with fainting ~ just the tachycardia.

I guess I'm just confused because I would like someone to say, "You can exercise until you reach 150. If your heart rate goes over 150, you should stop."

I'm a rule person. I need guidelines. I guess I'm afraid to exercise.

[steph37822]

oops

[India]

As a previous poster mentioned, keeping your legs strong is key. I've been really helped by my rowing machine, which, if you do it properly and push with your legs first and not pull with your arms, really helps to strengthen your legs. I am also sitting down which really helps. I just can't tolerate aerobics or anything like that which requires uprightness for so long! Pilates has been good too as, again, you can do a lot of the exercises in a recumbent position.

I also find that I have to be in a really cool room. My body can't cope with the stress of exercising and having to keep itself cool: I get very tachy very quickly if I exercise in heat.

But I'll agree that it's a frustrating experience because some days you'll feel as close to fine as you can and then the next day just a couple of pulls on the machine sets my hr skyrocketing. A beta blocker has helped a bit but too much beta blocker drops my BP. It's a catch-22 situation!

Let us know if anything works for you and good luck.

India

[yogini]

I am one of those people with very low exercise tolerance. My POTS is pretty mild in general, but whenever I push myself too hard with exercise, I get really tachy, headaches, nausea and vomiting. And I can't tolerate exercising in an upright position or at a high HR. So I have gone ultra slow in increasing my exercise routine. I started off with walking, then moved to pilates, then to a peddle exerciser at home. Soon I will trying the recumbent bike at the gym. Taking baby steps has has really helped me to gradually feel a lot better over the past few months. We are all different in what we can do, but exercise helps all of us in the long run. I hope you find something that works for you!

[EarthMother]

recumbent bike -- picked one up for $99. it's been great.

i try not to get caught by HR worries as long as i'm feeling 'ok'. my cardio told me it's not a problem for me.

My Dad told me that nascar drivers go like 200+ for the entire race? Don't know if it's true but I like that story.

:-)

EM

[Kite#7]

Hello all,

Jennifer,

I have written many posts on exercise regimens , if you recall them perhaps your queries maybe answered if they have not already. Steph always provides very experienced practical advice so you can be certain that her regimen is "tried & true" . I would suggest that you work at no more than 70% max hr ; finding this is easy 220 - age then 70 % of this number.

Jennifer , there is a difference between doing Cardio and Resistance training as it affects both your heart rate and the way your body utilises energy. So with that in mind , finding a regimen that incorporates both is best. I also believe that core training /stability training is extraordinarily important for people with Dysautonomias given the variety of symptoms. In fact , in my own training it is a staple and since I have recently sold My Gym I work mainly with wobble boards Swiss balls, medicine Balls ; until I replace my equipment with a home system.

Further , I hope all have had a Great summer - My Family & I made our move cross country and are finally settled in , I twas quite a TRIP !!

kite 7

[cnm1]

Rachel started water therapy this summer. It was the 1st time in four years that she felt ready to exercise at all. We did at a PT facility attached to a nursing home. The PT were used to "tiny" improvements since they deal mostly with the elderly. It has helped Rachel alot. She progressed to a exercise ball at home now that her insurance has run out for PT. It helped her regain enough muscle tone that she can sit in a chair without pain for a few hours. She even started play piano again!!!

Louise

[Laura]

Hi Jennifer! I don't do very well with walking, but manage much better with a recumbent bike. I tend to go by symptoms rather than heart rate (within reason), and my heart rate doesn't go as high with the bike as it does with walking.

( Hey Kite! I was just wondering yesterday how you were doing with your move. Glad things went OK! How are you liking your new spot?)

Laura