Do You Feel Better Or Worse While Exercising?

[ramakentesh]

Just wondering how do you feel at the time you are actually exercising? Do you crash later or feel more potsie during?

[Katybug]

I usually feel pretty good as I pedal my recumbent bike or walk the dog but the minute I stop, I can feel the blood being sucked back down into my lower body and start to feel POTSie. Even just to let my dog stop and sniff. The exception is if I have a migraine. Any exertion actually makes this worse so no exercise with migraines for me.

[Angela]

cardio or weights or yoga? I guess what you define as exercise. I feel bad even just going walking, but I can tolerate vinyasa borderline ashtanga yoga. I get dizzy in some poses but can pull thru. pilates is okay too since it is mostly mat exercise, not a lot of standing involved. both yoga and pilates focus on core a bunch which is good, and promote blood flow.

[issie]

With me it depends on the day. But, mostly I feel okay while doing it --as long as I don't stand in one place too long ----but, the day after and then the day after that ---It's badddddd.

Issie

[bizbiz]

I can walk at a moderate pace, but anything faster (eg power walking) and I get a tight chest and horrible pressure in my neck and head. Sometimes back pain too.

Afterwards, more often than not, I get a horrible headache that is borderline migraine.

I've given up exercising - it doesn't seem to make a difference for me. Last time I crashed I exercised as much as I could, and it still took me 2 years to get better. This time round I'm barely exercising and I'm the same as I was last time. So I'm no worse off for not exercising.

[puppylove]

WORSE. Exercise makes me feel horrible but I try to do it anyways.

[Birdlady]

It makes me feel worse as I'm doing it and afterward. If I exercise consistently for more than a week, then I'll start to get sick with a cold and sore throat. I don't even try anymore because in the end I'm actually spending more time in bed and feel worse.

[Kellysavedbygrace]

Better. Usually lots better with what appears to be better circulation and blood flow to the brain.

As stated above the problem is stopping.

When I leave the gym, usually right after I've pulled out of the parking lot, I literally feel the blood draining from my head and the lightheaded brain fog sets back in. AND, if I walk for a mile or more, when I stop it feels as if I am going to drop faint so I've learned to slow my pace greatly before stopping and that helps. Usually I will have a significant BP drop about 20 mins after exercise. So I make sure I'm not needed to do something right after exercise so I can go rest, eat and hydrate.

All that said, there are exercises I do that make my HR rise really quickly creating dizziness or SoB - which I watch- and some I do that make me grey out- so I've learned techniques, like sit-stands, walking and breathing to pump blood back up which prevent me from greying or fainting.

[imre]

Better, but it's gradually. I have to build up endurance. Not only that but it takes a bit of a warm up. At first when I'm doing cardio I always gag and get light headed. I just push through. After exercise, it depends. If I overdo it I get very tired. But I think in the long run it helps for sure.

[Chaos]

Depends on the day and where I am in the disease process. When I was in a "remission", I felt ok when I was exercising, but would be pretty wiped out afterwards. When I started back into a flare and now when I'm in a relapse, I feel bad while I try to exercise and am totally wiped out afterwards.

[SnowDrifter]

Exercise doesn't seem like it changes how I feel. Until I stop - then I get dumped in the middle of a nice POTS episode

[lfreem02]

I feel almost normal when exercising. I may get a little dizzy at times. The medication I started on in October is helping. I can jog or do other exercises, and when I stop, I don’t feel like I am going to pass out. Before the medication I couldn’t walk across campus and stop at an intersection without feeling like I was going to pass out crossing the street. I find that I don’t have to fidget like I used to when I stop moving. The time of day also makes a big difference for me. I ran a 5k last month in the morning and felt bad for days, but if I run the same distance in the evening, I feel fine.

[Relax86]

Crash after. If HR is up during I take longer rests between ex's (I weight train). I also use long exhales which seem to help control. Other times I have no difficulty during ex but later experience the crash. Sometimes happens during the shower - if I let water get too hot. Sometimes it's after my next meal. Sometimes it's the next time I pick up something from the floor, or something too heavy.

[Guest Alex]

slightly better but I got very symptomatic post exercise every time I tried. Walking is different - I can sometimes walk for hours and feel great during and after

Alex

[AllAboutPeace]

The last time I had a good exercise (although brief) was during my last stress test. I had the usual fatigue going in, but was determined to push myself so I could test my limits while monitored. It felt awesome to have the blood pumping everywhere it is supposed to go. So, even though I was exhausted, it felt good. But, 5-10 minutes later I totally crashed (bp dropped out and I had to get flat in a hurry).

I can't seem to do cardio at all and a 10 minute walk around the block includes nausea the whole time. I can usually keep other symptoms at bay by keeping the pace (no stopping).

Using weights seems to go better.

[tinkerbella]

Feel terrible . I saw something on tv the other day that I thought hmmm, maybe that would be fun to try. It was sling yoga. I was a fitness instructor years ago, but my heart kept feeling like it was going to pound right put of my chest. Along with I thought I was going to pass put all the time. It was horrible. I had to down several bottles of water just to breathe and try to stand. I often taught from the floor, pretending I was watching the form of everyone in the class just so I could catch my breath.

Now going over the stairs is a workout for me.

[blueskies]

Walking makes me feel like **** when I'm doing it but OI wise it's made a bit of difference. I'm a lot more steady on my feet at other times. I try to do 2 X20 minutes of walking (not fast, more like a stroll) 3 or 4 times a week. Although it's pretty hot this summer in Australia and I was unable to go out at all really in January. When I walk (summer or winter) I sweat excessively. And if I walk too long it will bring on a migraine. I used to walk for up to an hour and realized walking that long was often a trigger for migraine for me if I push this far. And like Kelly, when out walking, if I have to stop, say at a crossing or something I often feel like I'm going to drop to the ground.

Swimming is a wonderful exercise for me. It cools my hot irritated skin and sore head and the compression qualities of the water really gets my blood pumping with very little effort. However we've moved away from the ocean for a while and I now rarely get to swim in the salty sea water. I can't swim in chlorine as I'm allergic to it. (Also, not sure if it's true or not, but I read somewhere that in the 3 or 4 inches above the water in a chlorinated pool is full of gases --if true this would also explain why chlorine pools make me feel so crap).

As wonderful as swimming at the beach is it does not translate to any real noticeable improvement to my OI. I see real improvement with walking. Swimming seems to clear my brain fog and lift my spirits but only while I'm at the beach. Walking is a drag but it allows me to get around more freely at other times. Not always but quite some improvent.

Pilates which I did until nearly two years ago was wonderful. I was very fit and had plenty of muscle tone -- all my exercises were done on the floor on a mat, mostly lie-ing down. I had great stomach muscles. But then my back gave out and I needed a back operation and I'm unable to resume pilates -- it just hurts too much. Not that it was doing much for my OI but it was helping with my appearance which made me feel a bit better, given that I've put on so much weight over the past years. When POTS first hit strongly I lost lots of weight and was skinny. Now I'm very overweight from lying too much on the lounge and eating too much - I use food to ease depression symptoms. But somehow I need to spend my time semi-reclining. Sitting up is nearly as bad as standing for me. And lying flat is very unpleasant too. And dairy food does not cause any gut pain. unlike, say, some very healthy fried rice I made tonight that has my stomach sticking out like i'm 7 months pregnant and it's just painful. If I'd stuck with icecream or full fat plain yoghurt I would have felt much more comfortable gut wise but I need to improve my nutrient content.

[hilbiligrl]

i honestly feel much worse when exerting myself.... i feel as if I am going to fall over dead. I still can't seem to add constant excercise.... even the afterwards is much worse too. But something I plan on to continue to work with on a small scale... hoping i can build it up over this year.

[westernmass]

I have had periods of both. Generally during exercise feel great and then later just beat. Recently have been talking exercise program more seriously, was feeling great and having more energy and less crashes. But two workouts ago I bumped up to 40 min cardio sessions, and have been experiencing some dizziness and chest pain toward the end of my work out. Not sure what this means? Definitely new. Hopefully my cause for concern. I feel like I've gotten so good at ignoring pain, for better or worse...

[Mydoggielovesme2]

Because I was so deconditioned, I feel weak while exercising. HR and pulse all over the place. Usually takes anywhere from hours to a couple of days to recover. I am just so determined to make this work, I'm pushing through. Even if only able to do ten minutes at a time.

[Angela]

yeah, i feel like crappolla even walking but if I do vinyasa yoga i can get dizzy in certain poses but I think because of the focus of breath that saves me. i still feel it the next day but at least I know my body is responding as far as conditioning (FYI HYPERPOTS IDIOPATHIC, NO EDS so far), I am against running, although i have dreams about needing to run, i don't know why for over a year now, i think it is havoc on body long term (knee replacements etc i can't even walk very far etc), yes i used to run long distance in high school and was awesome but it created some sort of anxiety,( idk why, unless i felt compelled that i had to win every run) but i think a major component of the benefits of exercise of any type is BREATH. so don't push yourself too much, just breathe.

[anna]

My exercise tolerance seems to have been the same all my life! I can do low impact exercise for hours, I Nordic walk without problem as long as I am on the flat if I meet even a small incline I get dizzy/spaced my chest gets tight, my left carotid artery sticks out like mad and I get a very heavy numb feeling in my arms and legs.

One thing that came to mind the other day, while helping my son do an essay on the respiratory system lol, was does the fact that my lungs hyperinflate have anything to do with all this, I have been looking around the web and actually think it may have something to do with my rubbish exercise tolerance.!!

[Libby]

Usually during. I play in a once-a-week volleyball league, 3 games per set, and I always feel like I'm going to pass out for most of the second and third games. I know that my body won't drop until my bp is basically zero, so I play through it, but I feel like absolute crap.

[Kris4444]

I'm ok until I STOP. I become dizzy, tunnel vision sometimes, sometimes full on vertigo and TERRIBLE flushing! Sometimes the dizziness lingers and I'm afraid to drive home (if I'm at the barn or when I was going to Zumba). I was always very fit and active always and now because of this disease process I can't exercise or ride the way I used to and I have gained a tremendous amount of weight and don't even recognize myself.

Recently I took a 30 day medical leave. I worked out 5 days a week and joined weight watchers and stuck to the plan. I lost NOTHING. I flushed every time but the dizziness seemed to be less. I have started on antihistamines which are supposed to help with the flushing but nothing has changed. The immunologist said that I need to warm up slowly and cool down slowly, don't just stop. I am to the point of giving up. Love that the WW leader said I must be making bad food choices! I worked WW after my second child and lost 50 pounds with ease. This body is not going to let anything go.

[megsmit6]

I am traning for a 5K right now. The most important thing I have learned is just to listen to your body. I wear compression socks while I work out and I do it at the end of the day so that when I am done I go home and lay down or relax. I have done really well. I had one hospital stay recently but got right back into training. I eat very healthy and drink lots of water. If I dont eat properly then try to exercise it is really difficulty to make it through. Sometimes you just have to be in the right frame of mind as well. It is my stress relief and I fight to keep doing it everyday!