Exercise?

[Nikki]

I read a lot of stuff online about dysautonomia and exercise. Lots of people say when they stay active and exercise regularly, they feel a bit better. With me I always seem to feel a lot worse a few days later. Now, I have a lot of bad days..More bad than good - so I don't know if it's just my normal bad symptoms coming back or if exercise brought it on. Just last week, I was feeling a bit better so I did some cardio, salsa 20 minute dance video. The next day I just did exercises on my own, especially squats and stuff to try and build my leg muscles more. On the 3rd day I still did some exercise but towards the end of the day I was starting to feel funny. I can kind of tell when my symptoms are starting to come back after having a few days of feeling good. So far this week I've just felt so horrible..Very dizzy and vertigo-ish from time to time and just plain exhausted. Does anyone get like this after they exercise or could it just be my normally dizziness and such coming back? :-/

On my good days people tell me to just do other things I want to do and not worry about exercise since it always seems to do me in anyway..But I used to LOVE working out years ago. I usually did cardio for an hour every single day, sometimes more..I feel bad about laying around most of the time but I'm really too dizzy to do much of anything..and I'm just trying to figure out when I should just keep pushing or when my body really does need rest.

Any advice would be greatly appreciated.

[Christy_D]

My son's doctor has him doing water jogging- 3 to 4 times per week. At first, he would crash hard the next day, but he has built up his endurance and no longer crashes from it. He was doing much better with the exercise, but now is in a decline since we closed our pool for the season. I am going to start taking him to the YMCA or local community indoor pool for the winter to see if that can help again.

Make sure not to overdo it. You may need to scale back on how much exercise you are doing at one time, and maybe not daily.

Christy

[Ashelton80]

I read a lot of stuff online about dysautonomia and exercise. Lots of people say when they stay active and exercise regularly, they feel a bit better. With me I always seem to feel a lot worse a few days later. Now, I have a lot of bad days..More bad than good - so I don't know if it's just my normal bad symptoms coming back or if exercise brought it on. Just last week, I was feeling a bit better so I did some cardio, salsa 20 minute dance video. The next day I just did exercises on my own, especially squats and stuff to try and build my leg muscles more. On the 3rd day I still did some exercise but towards the end of the day I was starting to feel funny. I can kind of tell when my symptoms are starting to come back after having a few days of feeling good. So far this week I've just felt so horrible..Very dizzy and vertigo-ish from time to time and just plain exhausted. Does anyone get like this after they exercise or could it just be my normally dizziness and such coming back? :-/

On my good days people tell me to just do other things I want to do and not worry about exercise since it always seems to do me in anyway..But I used to LOVE working out years ago. I usually did cardio for an hour every single day, sometimes more..I feel bad about laying around most of the time but I'm really too dizzy to do much of anything..and I'm just trying to figure out when I should just keep pushing or when my body really does need rest.

Any advice would be greatly appreciated.

Supposedly it's better to do your exercise sitting down or being horizonta like swimming, recumbent bike, etcl. The exercises you mentioned are all vertical and are probably too taxing on your cardiovascular system if you are just starting back at it.

[juliegee]

My son's doctor has him doing water jogging- 3 to 4 times per week. At first, he would crash hard the next day, but he has built up his endurance and no longer crashes from it. He was doing much better with the exercise, but now is in a decline since we closed our pool for the season. I am going to start taking him to the YMCA or local community indoor pool for the winter to see if that can help again.

Make sure not to overdo it. You may need to scale back on how much exercise you are doing at one time, and maybe not daily.

Christy

Was the water jogging in the deep end (with a cable) where he didn't touch the bottom? Or just jogging in place where he could stand? I ask because I need Mack to do SOMETHING

[Christy_D]

Was the water jogging in the deep end (with a cable) where he didn't touch the bottom? Or just jogging in place where he could stand? I ask because I need Mack to do SOMETHING

He water jogged in about 4 1/2 feet of water where he was able to stand. He didn't like it at first, but then once he was in the pool I had to make him get out. I didn't want him over doing it. He hasn't done it in 2 months and his symptoms are getting much worse again. He had started back to school, but is now on Homebound again unfortunately. I need to get him back to it to see if that helps again. It's just much easier when the pool is in the backyard instead of having to take him to the YMCA or community pool. He has been walking at a track with me every night for 1.5 miles, but the doctor really prefers the water jogging.

[Brye]

I can't decide if exercising does me more harm than good. I love working out but it is exhausting for me. I know I'm a whole lot stronger than I was 11 months ago when I started but the fatigue is almost more than I can stand. I typically work out MWF. I have a set work out I do and it takes from 1-1.5 hours. Recumbant bike is my favorite part because even if I feel a little lightheaded I know it's not far to the floor.

Brye

[Nikki]

Hm alright. I'm going to check into some easier stuff to start with, at least for now..and just try not to overdo it. I guess I have to figure out how much is too much and I'll probably have these bad times happen again in the process of trying to figure out my limit lol. Thanks for the responses though.

[blueskies]

Swimming is usually highly recommended for POTS. I swim each summer in the sea (can't swim in a pool in winter because chlorine causes skin problems and makes my lungs feel like they are burning?). I stopped swimming at the end of last February (forgot to mention I'm in Australia so summer is end/beginning of year here not the middle) because we moved house then hubby got sick and when all that was over we were into winter and water was too cold for me to swim. I've been feeling sicker and sicker but I started swimming again a week ago as it feels so good when I'm fit enough to swim a kilometre. Not at all like exercise on land. My body feels better in the water than it does on land. I often joke that if I could live in water and swim everywhere that I'd be fine.

I read somewhere that water exercise benefits is due to compression qualities of the water. It keeps the blood pumping around our bodies. After a swim I am clear headed for a while and a migraine will disappear while I'm swimming and will stay away for 2-3 hours afterwards usually. Oh, and if I'm having a bout of the hot burning skin sensation (erythema) it will stop that pain for a while, too.

It might take some weeks of swimming to get over that heavy feeling that often occurs when you (I) come out of the water and feel gravity full force again. I feel like my whole body weighs more and legs feel heavier -- much like I feel when I'm having trouble walking.

I think the combination of it being a horizontal exercise AND the compression quality of water makes swimming so easy for me.

Must put a warning in though: if you are given to fainting -- and a lot of us are, it is advised that we swim with someone watching us. It IS possible for us to faint in the water which could mean drowning.

This year I've added in walking a bit in chest high water after my swim. I have no difficulty doing it. Yet, on dry land walking can be a real problem for me. I was told by a doctor that walking in water will also help with retaining bone density, something that swimming does not do.

So if you can swim, give it a go!

My pots doc is a big fan of swimming for exercise if you have pots. I used to complain that the fitness from swimming exercise didn't seem to translate to real life but I've now realized because of 8 months of not swimming that I've gone down hill pots-wise and that it is very likely because I have not been swimming in this time.

In my experience it will take me about 4 weeks of swimming 5 days a week to start to feel the strengthening benefits. But meanwhile just having my body feel light with no exertion while in the water is a good feeling.

One last note: make sure you drink plenty of water - before and after swimmng and during swimming if necessary. Apparently we do sweat when swimming only we don't know it and as we know it's very important to drink water to keep hydrated as much as possible. Hydration when exercising is even more necessary.

blue.

[ladyt]

hi

Many years ago, thats last century I did exesise and stuff every day. I loved to dance and work out and ride my bicykle and lots of other stuff. But it got harder and harder to do stuff. 1999 was last year i did propper work out stuff. That year I got worse even though i keept up my exersis regime. Since then i have been trying to do exesis and stuff, mostly whit out much luck. Now I think of every movment as exersis. Since I have been very gravity challenged for many years now. There is one thing I do as often as I can, I exersis in my mind. I read that that actually have some positive effect on the body, not much, but still. So I run and lift weights in my head.

Swimming i understand is great for pots. I have acsess to an heated pool two short periods every year now. That have been great. I cant do much when in the pool. I tryed in the beggining, but it would put be back to much. For me its best to dropp movment when the bodi is an sertan way and then try a lilte when its in a better way. Like today i really would like to try my recubent bike. But i know that that will make things worse. If i take it easy today, i migth move some tomorrow whit not so much consecvens. Whit that i mean that i can rest for some hours or the rest of the day and thats it. Fo me very short is better than trying fo long. On the recumbent bike its 1-3 min at most. Mostly as i said I consider all movment exersis now. And hopfully on day i will be abel to normal exersis on a regular basic...

I also try to move my arms when sitting in the reclainer. Like movments whit out weights, looks funny, but weigths getts to be to much. And i gess that its better to move slowly as much as on can, than do a lilte exersise and be gone for a week or more ..

Best of luck...

[janiedelite]

I agree that exercise is beneficial, as long as you really listen to your body and don't overdo it. I tried swimming, but the work it took to get to the facility, shower, get in the pool, exercise, get out, shower, redress, get home... For me I get more benefit from walking daily in whatever amounts my body can handle. It used to be that I could only walk to the end of the block and back. Each day is somewhat different and listening to our bodies is so important.

[lissy]

I also think exercise is benificial I always feel more dizzy if I do exercises standing so I do floor activites ( leg-lifts, push ups) and I recently moved iinto a home with 2 levels so I go up and down the stairs at least 20 times a day which I thought would be impossible and my legs hurt very bad for a few days.I know building leg muscles is suppose to help so I guess I'll see in a few months. I am determined to strenghing my body little by little I have been getting my appetite back finally,and I have gained a few lbs and hope to stay on this slowly improving path.

Swimming I imagine would be good because less gravity and more boyantcy ,I love to swim but have no ascess to a pool.