Exercise

[momdi]

My son's current POTS doc (as well as Dr. Low) suggested exercise to strengthen the leg muscles and help circulation. What do you do? How do you do it? How did you get started? How well has it helped? Any other encouragement?

[Mrs. Burschman]

I walk when it's nice out. When it's icy or too cold, we have a recumbent bike that I ride. It's nice because the seat's more comfortable than a regular bike. Also, it's very quiet, so I can watch TV while I ride. Makes it MUCH less boring.

Amy

[deucykub]

Hi, Momdi:

I have just recently started swimming for exercise, recommended by my dysautonomia doctor. It's a horizontal exercise and the water helps negate the gravitational pull that causes blood pooling. Of course, this is not recommended for fainters. This is the first exercise I've been able to do with any regularity. I also walk in the pool to try and build up my resistance to standing. I can exercise at a moderate pace for about 30 minutes, with less after-effects than I've had with any other exercise.

If your son doesn't faint, it's worth a try. My local health club provided a trial membership so that I could test out swimming first. Now that I've joined, they have also told me if at any point the swimming makes it worse, they will allow me to cancel my membership at no extra charge.

[Lenna]

My son's POTS doctor also told him to try very hard to exercise daily. He suggested walking, but we're in Boston where it's more like Antartica these days (without the global warming). Fortunately we have a treadmill that my son walks on for 20 minutes when he's having a good day. He usually does about a mile in the 20 minutes, although there are days when he goes a lot slower. And some days when he's too fatigued to do it at all.

[Ernie]

Hi,

Personally I can only walk around the house but if your son can do more you can use the recumbent bike or the treadmill.

[kjdube]

How old is he ?

The best exercise I've found for my legs and POTS is weighted squats. If he has a barbell or hand weights they will need to be heavy enough that with 3 sets of 10 reps he can feel his legs are fatigued on the last set. At first he may use no weights depending on his fitness. If he has balance issues he will need a spotter. And maybe a trainer if he has no experience. There are also exercise videos for weightlifting, some have excellent instruction on form. And there are different types of squats that target specific groups of leg muscle.

Of course this is only if he's old enough for weight training. Riding a bike or walking on a treadmill is good... but only when I build my leg muscles by lifting weights do I have noticable improvement where it actually changes the quality of my life.

Another good thing about weight lifting is that it takes a very short time to do each day.

[lalalisa]

Hello,

I've been swimming for about 1 and 1/2 years now and my muscles are much stronger because of it. (Dr Grubb told me that i had to exercise and swimming sounded like the most logical option) I shake a lot less and have also noticed that I even have less cognitive symptoms (brain fog is less frequent/intense). I started out with a kickboard swimming just 1 lap and now I'm up to 12 laps. I mostly do the back stroke and also kick with the kick board which really helps strengthen leg muscles.

I hope your son can find something that helps. Exercise is SO difficult...and it's important to find that balance and to listen to your body so you know when you can't push too hard.

Take care,

Lisa

[ajw4790]

Hi!

Thanks for posting this! I have been battling myself on the same thing as well and am curious about what others have found that works for them.

Swimming definitly sounds like a great solution (as far as the mechanism of movement and what it does for you), but for myself I just wouldn't feel safe. I am one of the ones that they have told under no circumstances enter a hot tub for fear of drowning, and I can not stand/tolerate heat of heated pools and the surroundings. I live in Ohio so outside swimming now is out of the question!

Treadmill and bike sound like good options, but honestly I get bored very easily! I can not sit or walk in the same place for very long. I don't have great access to either as well, although I could work it out a few days a week.

I am also VERY uncoordinated and have always felt like I would hurt myself on a treadmill when I am on one. I also am not one to ever run outside, it would not happen. It is boring, then there is allergies, and or less I strapped a camelback to my back I would be thirsty and dehydrated before I got ten houses down! You would see me on the six o clock news: delerious idiot found roaming the streets running like Phoebe on "Friends"!

So, yeah I do not have the answer, but am definetly looking for one! At this point I guess I try walking as much as possible, stairs (not too many flights at one time), and doing some lunges/squats.

I have to be one of the worst at this, and I think this is one of the areas were my can't sit still, or do one thing for too long really kicks in! (I think this is where they may have gotten the ADD thing from!)

Good Luck!

[amy54]

Hi

I thought I'd add my bit to this post because exercise has made a HUGE difference for me.

It was suggested to me, too, that leg strengthening will help the blood not pool as much in my legs. I was pretty, no very, sceptical, particularly as my legs were of at least average strength to begin with (don't ask me why - it's not as if I could use them much).

I did resistance training - weight training - just for my legs. If you can find a gym or physio you can ask for exercises that will just strengthen your legs.

Lots of these can be done sitting or even lying down! I'm talking leg presses etc. against free or pin weights.

See, for me, and I'm guessing for a lot of us, walking isn't (or wasn't - I'm a lot better now) an option - standing makes me faint. Different doctors say different things - I know my specialist didn't want me to do any cardio, at least until I had started getting considerably better, as she thought it would worsen my POTS.

I know this may sound weird, but I stuck with it, slowly going up the weights and it made the world of difference for me. I'd never seen the inside of a gym before and felt weird going in one, but I slowly, but continually, keep on improving - which made it all worthwhile.

If Dr Lowe was suggesting you do leg strengthening, I think he might have meant doing some leg exercises designed by a physio or gym? I don't know, obviously, but I know that was what my doctor meant.

Hope you find something that works

Amy

[Sushi]

Exercise has helped me a great deal too. Started with 5 minutes of swimming in the summer, and built up in infinitessimal increments. Added pilates (all done lying down), outdoor cycling, cause I love it, walking, yoga (the hardest for me cause you are standing and often the pace is too fast in a gym class.) Also use weight machines. I love exercise and it is a real discipline not to do too much. After about 9 months I'm up to around 30 min to an hour (depending on the type) and 5 or 6 days a week. Huge difference.

In fact I didn't want to give up swimming when it got cold and my gym doesn't have a pool so I got a wetsuit and it is really fun. It is harder with all that cold water gear on, so takes less time!

[ajw4790]

Sushi: LOL, you're in Florida, yeah a wetsuit would be an option. Here you have to deal with everything being frozen over with a layer of snow on top!

I too have thought of yoga, but I get very dizzy with about everything when I try it, and shaky, and then it is all down(hill) from there! (i fall down)

[mkoven]

I'm having a rough time now, and can't keep up with my exercise routine. I feel okay during, but crash and want to faint soon after.

For cardio, I normally alternate between recumbent bike or walking. I much prefer walking outside-- more interesting, natural light, easier on the knees. But the weather is awful, it's harder for me to stay upright with my current flare...

Otherwise, I love pilates. I take an individual lesson once a week. I also have home exercises from a pt. One thing that's helped my legs that is semi-reclined is a "total gym"-- it's like a gentle leg press, much gentler than one you would find at a standard gym. A PT recommended it.

But I"m bummed, because I'd worked up to 30 minutes of walking, and now I feel too faint to keep it up.

[runningshoe]

Hi

Before pots I was addicted to exercise. I would run, walk or swim. My first pots episode was pretty bad and happened after a run. Dr told me to stop exercising until we knew what was going on. I think I got worse as I became out of shape. When it was time to start up again, I knew I couldn't run and swimming was out of the question (huge IC flare after getting in the pool). I was really bummed because I missed my runner's high. A friend suggested I join Curves and it was the best decision. In the beginning I was very careful and always took my time to "recover" before going home. But I was never alone so if something funky had happened I was in a safe place. Plus you can go as slow as you want. The resistence training feels wonderful. Not only do I feel stronger but I lost 5 inches since May! It is climate controlled which is more than I can say for exercising in the outdoors in New England. Most curves will give you a trial membership. I can only exercise in the Morning. By evening I am toast!

[Steve]

I have to be one of the worst at this, and I think this is one of the areas were my can't sit still, or do one thing for too long really kicks in! (I think this is where they may have gotten the ADD thing from!)

That's interesting. I think I developed the same habit - not being able to stay still in one place for a long time because of physical discomfort. But that isn't ADD, even though it may lead to the same behavior.

[pamyla]

I've been taking a gentle yoga class for the last year and it's been really helpful to me. Before this class, I was basically exercise intolerant - I could manage about 5 min on the recumbent bike if I went slowly Most of the people in my class have disabilities, so the class has a lot of relaxing floorwork, and usually ends with a few minutes of standing exercises - which is tolerable. I find that I've built up muscles in my legs, arms and core area from the classes. For those of you mentioning that yoga was too hard, you might want to check with your local rec centers to see if they offer any of the gentle classes for those with limitations.

[Mrs. Burschman]

Another option (for those who can stand) is tai chi. Although it also can be done seated. But it's very slow and relaxing. The goal is to NOT work too hard, but it's still a decent workout!

Amy

[Donna F]

Hey everyone, I havent been on here in a while!! Nice to be back, first of all Im very frustrated, and want to exercise, but for one Ive actually become worse than I was, I know have almost killer leg pain, esp at night, and the docs are saying I may have now not just POTs, but PAF, Chronic and basically if i dont make some sort of improvements, from what ive read well, not a good long term outcome. My prob is ive gained 35 lbs in a yr on florinef, second is when they put me on a treadmill, i tend to have a hr of almost 200 in the beginnin these days, i have a pacer, so now if i have to have a heart test they give me nuclear meds.

Its frustrating, I use to have too low h/rate, now i have a machine at home because thru the whole month of Oct, my hr was between 125 and 150, so how do u exercise when ur hr soars goin 2 the bathroom, and frustratin part is i want so much to look and feel better, but when ur horrified to go to the gym for god sakes, dont want to embarrass myself,, and well docs tell me to take beta blocker again because of h.rate, however were dealin with the extreme low pressures again. So does anyone have any thing similiar, and if anyone could offer any advice all is so welcome, Im glad to be back, my computer i had wouldnt let me on so thank god to be back, and hopefully, i can stay, all of u have helped me so much in past!!

Donna F

[Mrs. Burschman]

Hey, Donna. Welcome back!

There seem to be a lot of gyms popping up (Curves is one) that are limited to women, so I think that would be less embarrassing. Also, check with your local hospitals. We have two major health systems in my town, and both have their own fitness centers. I'm sure they have programs for people with limited physical abilities and could help you get started on a program that would help.

Good luck! I'm sorry you're struggling, but I'm glad that you knew where to turn for advice and support!

Amy

[Donna F]

Hey, Donna. Welcome back!

There seem to be a lot of gyms popping up (Curves is one) that are limited to women, so I think that would be less embarrassing. Also, check with your local hospitals. We have two major health systems in my town, and both have their own fitness centers. I'm sure they have programs for people with limited physical abilities and could help you get started on a program that would help.

Good luck! I'm sorry you're struggling, but I'm glad that you knew where to turn for advice and support!

Amy

Amy,

Thanks for the advice, I have checked with local facilities but they kinda put it like if i need that kinda monitoring it would have to be paid thru a ins comp r something, idk, but im sure curves would love me, i would give them a daily thrill, and theyd prob put the ambulance on speed dial, god sounds awful but about the way it is!! Thanks for advice'

donna F

[yogini]

What helped me is to start really slow and ease into things. And to exercise regularly. Exercises where I am lying down (swimming, pilates) or sitting (recumbent bike) are the easiest, along with walking since it is slow. I worked with personal trainers for a while (meaning to get back into it) and that was great b/c they gently pushed me. Cardio was impossible at first and weights were hard too. I had to work up to both of them and still can't do them on my off days. Right now I'm really into yoga and it is helping a ton, but I couldn't have done it if I hadn't tried all the other stuff first. I love yoga because I actually feel energized after doing it, as opposed to feeling wiped out as I do from the other exercises.

You may also want to read through old posts as this comes up a lot. Like some of the others, exercise has been a lifesaver for me. Hope you find something that works for you!

[Sunfish]

as rita just mentioned, there have been a lot of pretty comprehensive discussions on exercise over the years so i would highly recommend a search as you'll get a LOT more info that way. you could search for exercise, conditioning, or specific types of exercise that have been mentioned (swimming, pilates, yoga, etc).

my answer would vary a lot depending on what your son's current physical abilities/ tolerance is as - throughout my over 10 yrs with dysautonomia - what i've been able to do has changed greatly. at times i was able, with meds & LOTS of fluid/ salt intake, to work out quite extensively (triathlons (swimming, running, biking), rollerblading, rowing, lifting, etc) when "stable" but that seems like a different lifetime now. as i've declined over the years things that have been doable/helpful for me at various times have largely been anything that eliminates being entirely upright for any extended amount of time. this has included a recumbant bike, rowing machine (not recommend unless someone can show you the proper technique b/c you can really hurt your back otherwise), lifting (all seated), yoga & pilates (with adaptations to limit/ eliminate standing), etc. now i can only do a few things reclined/ lying down as most of my "working out" is just daily living, but i've also been considering buying one of the small peddler things often used in PT-type settings.

i also did want to mention, though (for any others reading as well), that someone being a fainter doesn't automatically rule out swimming. it's something that needs to be talked over with a doc & of course certain precautions need to be taken, but for many fainters being flat in the water eliminates the problem such that the getting to/ from the pool is what has to be paid the most attention to. it's no longer an option for me b/c of assorted IVs/ tubes in my body, but there were times that i could swim up to a mile when i couldn't walk more than a few feet without fainting (due to B/P drop). i had to use a wheelchair to get to/ from the side of the pool, had to lay down on the side of the pool after my swim before sitting back in the chair & leaving, etc. but in the pool i was happy, well, as a fish:-). i was previously a competitive swimmer so by no means am i advocating everyone trying to get out and swim a mile....just trying to illustrate that limitations on land don't necessarily translate to the water. i used to coach/ teach as well, and did some work with children/ teens with various disabilities where this was also illustrated over & over again.

that said, i've given my water safety lecture on here before (so that if you do a search you'll likely come across it), but in short there ARE things that need to be paid mind. no one - even healthy folk - should be swimming alone, only certain things are actually safe to depend on for flotation devices, etc. but there are very few situations that are complete deal brakers for swimming...WITH the right facility, equipment, instructor/ helper, etc. there are a few (i.e. IV lines, large open wounds, etc) and i realize that the needed facility/ environment/ equipment/ instructor/ etc isn't always available or affordable so am not trying to minimize those limitations, but if anyone needs help brainstorming on how to get into the water don't hesitate to pick my brain. after all, i'm the resident fish, no?? and while some of them have expired, i have some credentials to go along with my fishiness too

last but not least, i do really want to encourage any/ all of you to do whatever you can whenever you can in regard to exercise, fully realizing that this will mean vastly different things for different people. both in terms of what the "exercise" may be & in terms of how it may or may not change your situation health wise. considering my pretty dramatic health decline over the years, i realize that i could come across as a pretty poor advertisement for the benefits of exercise/ conditioning. but the other side of the coin is that numerous docs, nurses, PT/OTs, etc have not been shy to tell me that my decline would have likely happened much sooner had i not always pushed to be as active as i could be at any given time and that had my body been even more run down/ deconditioned that i very well may not have survived the numerous bouts of sepsis this past year. i couldn't agree more, so just wanted to mention it to illustrate that exercise/ conditioning/ activity isn't only advantageous in the hope to bring improvement but also that - for those of us who aren't as lucky in that regard - it can help slow progression &/or even help the body to be in a better place to fight off whatever might come (which, in reality, is true for anyone, even the healthiest of person).

okay.....off my soapbox. i had not intended a long post here. oops .

melissa