exercise

[momofpreciousboy]

I have been told by the neurologist that I will probably be put on an exercise program. Techinically, aren't we exercising all the time with the heart beating so fast? (I know it is not the only muscle, but still). I am just wondering --how exactly is that possible? Wouldn't your heart rate just go higher and higher? I know the more I do and longer I stay up, it just stays right up with it.

And really, is it ok for your heart rate to be high all the time? Doesn't it put a lot of stress on your heart, and everything that does not get its full oxygen supply from the heart pumping inefficiently? Is this what causes the neck and head symptoms--lack of oxygen?

Getting off track. Do they monitor you at first or just give you a list of exercises to do at home?

Do any of you guys go Dallas for treatment?

Thanks guys. I think only people with POTS could possibly understand the way we feel. To have so many symptoms at once and try to make another person understand is just impossible.

Jennifer TX

[taylortotmom]

Many patients with dysautonomia are put on deconditioning programs. My cardiologist threatened to put in cardiac rehab a few years back. With dysautonomias your body gets "conditioned" to being inactive. How can you exercise when you faint when you're upright? Well, the school of thought about reconditioning is that you can train your body to handle more and more over time. This for us is very different from "exercise" programs of healthy people. We have to start small- very small and slow and under the care of a medical professional. We don't hop up and walk three miles our first day in training. We might sit up and do some easy stretches for ten minutes a day for the first week or two. So, when your neurologist is saying an exercise program he is probably referring to a deconditioning program which should be monitored by someone very familiar with the physical limitations of dysautonomias.

Carmen

[Poohbear]

Jennifer,

I jokingly asked my cardiologist one time if my tachycardia counted as a cardiovascular workout. He said, " technically yes however, it does nothing to maintain your muscle tone."

I currently have physical therapy twice a week and I do exercises at home. Mostly we work on muscle tone at this point which really doesn't elevate the heart rate. It is slow work but consistent. The first goal is they want you not to lose any further muscle tone. Once you rebuild some tone then you slowly add things and your body will adjust some.

You may never be able to walk or run like a "normal" person but there are things you can do that won't hurt you and may in fact help you.

[Bella127]

Jennifer,

I have always wondered the same thing .. all of the doctors say to keep yourself conditioned, go swimming (right, with the heat all around the pool, so I can pass out and then slip on the tile floor and hit my head??? ) lift weights, walk ..

I understand where they are coming from as I'm sure you do too .. but most of the time anymore I am SOOO tired by the time I am done with my shower, then doing a few things during the day (ex- tidying up my room for a few minutes) that I feel like I've gotten all the exercise I need

I agree with what everyone else has said, just that in the terms of "exercise" they will usually give you some stretches to do to strengthen your muscles, that type of thing.

I went through some physical therapy in my early Potsy days and I would have little worksheets of exercises to do (sit on a chair, lift this leg, now do a backflip .. ) that sort of thing. You will slowly build up your legs to have more muscle tone.

I remember when I was soo sick at first with POTS, sitting on the couch, I used to go for "walks" with my brothers/dad/mom .. whoever wanted to take me around the house. Haha, it definitely worked in strengthening my muscles! Which reminds me -- one time my brother came to help me from the couch in the family room, and was taking me into the den .. another ROOOM!!! Wow, I felt like I hadn't moved for days, and found myself saying, "Yay, a field trip!" while holding onto him shuffling off in my pajamas and slippers

So start SMALL, every bit is worth it, even if it doesn't feel like it. If my family didn't make me get up and at least walk around I don't think I would have kept any muscle tone.

It is hard at first, but remember it will help you in the long run. I used to even do exercises with my arms with 2 lb weights or those little wrist weights. Find what works for you, and use that. Go slow!

Good luck!

*ChRiSsY*

[OCsunshine]

This is why I do gentle pilates and yoga sessions... short sessions... it helps with my muscle tone and I try to stay "lean" the best I can.

My heart just can't handle cardio workouts- I have been diagnosed with NMH (not POTS) but if I start a cardio workout or run or ANYthing like that, it's like my heart can't re-set itself afterwards. I have been to the ER many times because of that.

I love pilates and yoga, though. I take it easy- I go slower than Denise Austin. But I do the 'exercises' and it feels great and doesn't start my heart racing.

Just an idea......

-Rachel

[MightyMouse]

Not only is it possible, it's absolutely imperative if you want to keep yourself as independent as you can be.

I do my exercises on the floor--mostly Pilates. I also do about 10 to 15 minutes on a recumbent bike, when I can.

nina

[Kitsakatsa]

I had to start with 5 minutes a day and cardiac rehab, which moves you very slowly through muscle-building exercises. I am now up to 40 per day with the help of Mestinon. I was deconditioned to a point that the walk in from the car would make me dizzy and sick. I didn't exercise much for a year and a half. Now I am at the point where I can. I do resistance instead of endurance and it is much easier on the POTS symptoms. Isotonic exercises are recommended where you learn how to breathe and build your stomach muscles. Large medical centers usually have all of these things in their rehab centers. I had to build up though, and it took some time.

Best of luck!

[steph37822]

oops

[lthomas521]

Back when I was very sick, I had only a certain amount of energy. If I squandered it doing "exercise," I wouldn't have enough energy to do other kinds of activities that involve physical exertion. For example, to do laundry, I'd have to take things down and then up two flights of stairs. That felt like exertion to me, but people don't think of that sort of thing as exercise. The more I tried to "exercise," the worse my quality of life was. The exercise made me feel worse, not better, and nothing else that I needed to do was getting done. So I finally just decided to pace myself, and allocate my energy efficiently. I would only do "exercise" if I could "afford" it.

Right before I started on the thiamine, I had a cardiac output test, which showed that my heart was perfectly normal, but that my anaerobic threshold was astoundingly low. The funny thing was, I didn't even feel bad at all during the test. But it did explain why exercise would wipe me out. The exercise physiologist interpreted the test as meaning that I needed to exercise more. But I knew from long and painful experience that that approach made me worse, not better. It would have been interesting to measure my anaerobic threshold a few days after I started taking the thiamine, because suddenly I could tolerate exertion again.

Whether exercise will help or harm you depends on why you are sick to begin with. Recommendations about exercise are made for the general population, not for people with rare, unusual medical problems. To take an extreme example, if you take someone who has a severe thiamine deficiency and force him to exercise, you can induce a very severe clinical condition that will kill the person quickly. The person would live much longer if you don't force him to exercise.

I'm not saying that exercise is inherently bad, just that recommendations that work for the general population might be very bad for people with unusual medical conditions, such as a metabolic error. Similarly, some kinds of stretching might be a bad idea if you have a connective tissue disorder. If you are already having a problem with joint laxity, might stretching make it worse? Perhaps a good physical therapist could provide good guidance. I don't know.

I think that a lot of people are swayed by the "Muscular Christian" variant of the Puritan Ethic. The pain and suffering resulting from exercise are a kind of "mortification of the flesh." So, instead of asking why some of us can't exercise, people look down their noses at us and conclude that we are sinners and deserve the **** that our lives have become. Once people get into that mindset, you can't reason with them at all. They won't even listen to the fact that POTS can happen to elite athletes.

[Jenn202]

I have done a gamit of different excersises through the years bit have found nothing better than the Total Gym......

Its great...it was originally used ( and still is) in rehab clinics...

Whats so great about it is the fact that you can do basic rehabilitation excersises, or get a total weight/ aerobic workout...

My husband who is a police officer and has lifted hard for years uses it and gets great benefits ...... thats how versitile it is!

What I notice is the best part of it is the fact that you are layng on an incline the eintre time you are doing the excersises... I believe for me this stabilizes my BP and heart Rate...

I'm a bit advocate of strength training. I have been doing it for 8 years.... even when I was bedridden with Undiagnosed Lyme I still had my free weights asnd used them in bed. I truly attribute this to never losing muscle tone and keeping strength up to recover quicker.

I find I can work out much longer and get a much fuller workout on the Total Gym than any other thing I tried.

Walmart sells them for around $249 I believe..... Best investment I made.......

I think the key with excersise is to stop BEFORE you become tired...

I push myself , but I always stop before that point you hit where you are exhausted.