For Anyone Who Exercises....

[icesktr189]

Please tell me it gets easier. I did 5 mins on my stationary bike tonight and some light arm ones and i feel like death. This is the first night I am doing this and my hr did hit 182. I just dont know if I should stop or keep going. I dont have a cardiologist at the moment and not sure... thanks!

[ramakentesh]

Ok the low down on exercise for me is that some docs tell you to exercise only in a way that maintains your heart rate at a certain level initially. Even if you have to do them lying down.

For me Ive always just pushed hard no matter how bad Ive felt. But last time it took my a long time before I felt better and Im still not even convinced the exercise did anything except allow me to exercise more LOL. I came out of my first boute of POTS without any exercise other than 20 minute walks

[icesktr189]

I am just worried about crashing or my hr going too high because I am not sure what is considered "too high". I know previous times I have gone over 200 bmp but I just layed down after a minute. I am not looking to loose weight or anything, I just want some more muscle in my legs because I literally dont have any lol I just feel pathetic that 5 mins feels like one hundred

[icesktr189]

Oh did you eventually get to a point where you didnt feel like passing out the entire time? I feel like staying conscious is way harder than the actual exercise

[ramakentesh]

yes definately I did. But it took a while the last time. I used to just do this ridiculous shuffle run for 10 metres over at the park near where I used to live. then it got longer and longer, but it took a while for me to feel any benefit this time.

In previous relpases ive taken licorice as well as the exercise and I found that combo was more beneficial. Increased the blood volume quicker maybe? Im not really sure why but it did help.

[ramakentesh]

My tip is to try to just do it. Try not to concentrate on how it makes you feel at the time or the next day - just keep trying. At one stage Id take a beta blocker after wards to calm my ANS down.

[anna]

Try looking at http://pilatesfoundation.com/newsite2/index.php you might find you build muscle better doing this form of exercise, it helps build up on the very important small muscle groups. My children have classical EDS and had very poor muscle tone, even my two children that have been doing dance to degree level, but after quite some time they are now building up some good tone finally!!!

[maggie]

I was accepted into the Dallas program for exercise. When I received the protocol I knew there wasn't any way that it was going to work. What I did find was that he used an exercise physiologist and I found one in my town. She had never heard of pots, but was so curious that she researched it and between her and my internest they were able to get me into the hospital program. She developed a program just for me and I followed it for three years. Most of it was warm ups and then riding a recumbent bike. I did that for three years and I just couldn't ride that bike any more. So I decided it was time to do something fun to keep me interested. I called all the dance studios in town and none would take me for the risk of liability. Fortunately my husband new an owner of a dance studio and he agreed to take me on. I have been dancing for four months now and my heart rate has gone down 15 beats per minute. I went to see my nerurologist and he couldn't believe it. I did give my dance instructor the exercise program so he could see where she was going. The key was to start slow, work up very slowly and keep track of my heart rate. Some days I can only dance 15 minutes other days I can dance 45 minutes. It has been so wonderful to be back on my feet once again. Now I have dance steps that I do at home when feeling good. It's just amazing at how it has helped me. I am hoping to have these routines set to video and hope the forum allows me to post this on this site. It would be so interesting if others would try and if it would help those here as it has helped me. What I am finding out, is that what helps one doesn't mean it will help others.

Maggie

[JennaC]

Have you tried yoga? I've been doing gentle yoga for about a year with positive results and just started recumbent exercises (recumbent bike and swimming). I am trying to keep my heart rate low (<130) and will hopefully work up to upright exercise like a bike or elliptical.

[maggie]

I find I can't put my head down, I believe some yoga postitions have this, I pass out when I lower my head. I keep my heart rate lower then 140, but sometimes it does go higher, but it comes down quickly after I stop and rest. What I have found that with adrenline surges that I tend to get, if I dance for 15 minutes and then rest it usually drops my adreline. At night when I can't sleep I do the same thing. I dance for 15 minutes then within 30 minutes I'm sleeping. So good to hear all these good suggestions what works for others.

Maggie

[Trach]

I recently purchased a rower on the advice of Dr. Blitshteyn. I did not do very well on the stationary bike, but feel much better on the rower. I just row as long as I can and then take a break. Dr Levine's theory of "pushing through" to a targeted heart rate does not work for me - triggers a massive migraine.

[RunningWild]

I started noticing my problems when exercising. Mostly because I was an avid runner, and suddenly began feeling faint during/after all of my runs. My EP told me that he never wants me to exercise alone, and to make sure my gym has a AED nearby...

Now, I sometimes feel okay when I run. Its not nearly as fast, and I can only manage for around 30 minutes... but really I think its all about feeling around for your capacity. If you start feeling like crap, slow down or stop. And always take baby steps when starting something new. I still get my HR to like 200bpm when I jog. I don't feel like this is normal (despite my EP okaying it), but I am very concerned about staying 'fit'.

Also- I always feel totally worn out after exercise... I hope this lessens as i increase my fitness level a bit.

[jangle]

Before I knew I had POTS I started a jogging program. Basically I just tried to jog a little bit further than the previous day. I found my body was able to catch a "second breath" sort of speak so that even when I got tired eventually my body was able to acclimate while keeping the same pace. This effect got prolonged enough to where I was jogging around 20-30 minutes a day.

Everyone is different so it's hard for me to make recommendations in general. I would say to start slow but to expect your body to eventually acclimate to the exercise. It feels really bad I know, but hopefully in the long run it will improve our symptoms. Just like chugging salt water tastes nasty, it's just one of those things you have to endure for the improvement. So sorry you have to experience this, hopefully one day there will be an easier treatment for us.

[roxie]

I just started seeing an exercise physiologist that works for my new pots dr.

He gave me a light program to start & said wear a hr monitor & to get it in 120-130

He started me out doing 5 mins of kicking my legs in the tub.

It is hard. But it doesn't spike my HR as much as I thought it would.

He also has me doing everything laying down. I bet that'd be a better place to start. 

I've been doing 5 mins in the tub for about ten days now. Two days ago was the first day felt "steady" in the water, like I wasn't going to slide all around. So some core muscles must be strengthening ! And I wasn't shaking as much afterwards.

He also has me doing some basic crunches and leg lifts. Also watching my HR & spacing it through the day. He told me it's better to do one

set every 2 hours than to do it all at once and crash the next day.

[fiona-jane]

i do quite a lot of exercise but most of it is done sitting - i play parabadminton in my wheelchair and find my PoTS stays relatively settled, as long as i rest enough between games and training exercise. after about an hour of it i tend to feel so much healthier and my PoTS symptoms settle right down and stay that way for a good hour or so after i've finished exercising, but i need to exercise hard enough that i get a bit sweaty and hot for this to happen. i also cycle with my little bike frame that sits on the floor (and i sit on a chair). also do my physio but most of that is pilates exercises.

if i try and do any exercise while stood up (or relatively stood up, like on a normal bike) i feel like death in just a few seconds. in about 5 mins of relatively intense exercise i tend to black out (or get super close). even just walking is really difficult and makes me really dizzy. cant be a coincidence that i can do tons more and have my symptoms stay relatively settled while i'm sat down

maybe try exercising on a recumbant bike and see if you find that easier?

fi

[Katybug]

I started really slowly on the recumbent bike and the dog walks...5 mins each. The walks sometimes didn't even last 5 mins. in the beginning. And sometimes, you could find me sitting on the curb in my neighborhood needing a break. BUT, it has gotten easier...even though I am on a downhill swing I have been able to maintain my exercise and I am up to 25 mins. on the bike and 30-40 mins. with the dog. Some days I have to cut it short or do one and not the other (the dog always wins cause she's way more fun than the bike .) It did feel like death in the beginning at times, but it will get easier and I think it also helped me mentally too. It gave me some hope to set a goal and see progress and it also gave me a physical outlet for my boredom for some small part of the day.