Pushing Yourself

[Evergreen]

When it's hard to stand and walk, do you push yourself?

I've never fainted, but when I stand my hr races and pounds. (It's better than when I first started though, my avg hr when I stand is usually 130ish as opposed to 200)

If I push myself to stand more will I become more tolerant to standing?

Is it dangerous to stand if my heart is racing/pounding? Can that cause permanent damage?

[Wufflebear]

I have been fainting since 3 yo and was not diagnosed till 34 (42 now). So I had no choice but to push myself. In college and after I would stand near the bed and push it and throw my weight at the last minute so I landed on the bed. I am not a doctor in any way, shape or form however. I just did what I had to do. I think the key to it is getting to know your body very, very well.. So you know the warning signs and when you can push it, and when you can't.
That is my two cents.

[ks42]

I don't push myself at all for two reasons:

1) Yes, high heart rates that are not induced by cardiovascular exercise (anything over 100 usually) can cause unnecessary stress on the heart and there is a risk of developing cardiomyopathy (tachycardiomyopathy). The risk is super low for some people, higher for others, so that would be a conversation to have with your doctors. However, in my case, my doctors said I should be avoiding prolonged heart rates above 100. Many POTS doctors advise a recumbent (reclined or laying down) exercise regimen at first. My POTS doc wouldn't allow me to do ANYTHING upright - even short walks - for the first six months I was sick (maybe more, can't remember).

2) If I push myself, my POTS just gets progressively worse. My heart rates get higher and higher each day, and my body starts pumping out way more adrenaline than usual. Eventually, I become so weak I can't stand without tremors, and feel like I don't have enough energy to lift my arms or even breathe. It's scary stuff. Also, my blood volume depletes to the point where I wind up in the ER on oxygen and fluids. So no, in my case, pushing makes me worse. A LOT worse. After a period of bed rest, my heart rates actually improve a lot, to the point where I can walk almost an hour a day, but I don't improve until I stop pushing and let myself heal.

Everyone is different. Some people can push themselves and actually feel better. I think it depends very much on the specific underlying cause of your POTS, the type of POTS you have, whether you have any other condition(s) along with it, and so on. So this is just my own personal experience; I can't speak to whether this applies to you or not.

[navyblue]

I push myself and I think it helps. Even if standing hr is 130 or so, for me standing for longer and moving around helps a bit. Dishes had piled up in the sink last night- huge amount of them, and initially I was gonna sit on a stool and do them all. Then I thought "no! I'm not going to set a precedent for doing that." So I turned on some tunes, stood up to do them, and ending up standing for about half an hour doing them and jamming out (I made sure to keep moving my legs). Not only was I okay, it was psychologically good for me.

[Guest ANCY]

I believe this is one of those questions best answered by a knowledgeable treating physician, as others have said every person is different so what is good for one of us is not necessarily the answer.

Personally I find pushing myself to be a double edged sword. On the one hand it helps overcome decondioning but on the other if I go to far it sends me into a flare. Last year I hardly pushed myself at all because going to far ment I ended up much worse for months.

In the begining of this year my Dr had me do a 5 day course of IVIG and since then I've seen much improvment most of all my flares have been less severe thus making me willing to push the limits. I have only just started walking again about a month ago. Usually make about 30 steps before passing out and takes me 2-3 days to recover. My Dr believes that I could be in a better position if I had not become so severely deconditioned, oh well, guess hind sight is 20/20. Hard to know what to do when you really don't understand what is going on...

You may want to do some research on tilt training if you want to develop a higher tolerance for standing. It can be helpful for some, but once again best answered by treating Dr.

Hope you find what is right for you!

[stellaluna]

In my daily life, I don't push myself in general unless very necessary. I suppose I mean, I sit down often and give myself breaks. ( I am a teacher and used to standing, walking and being on my feet most of the day but I have changed this. However, I have never fainted). I read recently the advice "You are not stronger than your blood pressure". A nurse told me that the best thing for me if I feel near faint, is to get down on one knee (to avoid a head injury if I did faint).

At work, I have strategically placed chairs and sit much more often and ask students to come to me (vs.me making rounds of the room sometimes) or bring me items--NOT how I would like to do things or how I have done things in the past but my new normal.

However, sometimes my ego gets in the way and I do feel like I have a bit of mind over matter.... ( I would never test this in the charge of children or in a dangerous situation but...). During my TTT, my HR surged with a rise over 60 beats and my blood pressure dropped so low that the nurses were shocked and just waited for me to pass out. I had to stop at about 40 minutes in because it was so unpleasant and uncomfortable. I was concentrating/meditating the whole time on geting through and not fainting.. passing out seems scary to me because it would be a tipping point (no pun intended...) in my medical plan (not that I don't welcomethe POTs diagnosis because it is a long-awaited answer and piece to the puzzle). I don't know if I'm making sense.

[looneymom]

It's so great that you can stand up but if I were you, I would ask your doctor and see what he wants your heart rate to be at when standing up. The reason I say this is because everyone has a different heart range to be in because of height, weight, and gender. If you know what your heart rate is supposed to be, then you can pace yourself a little more. My son has a pulse ox meter that measures heart rate. When we are out, I always have it in my purse or around my neck because comes in a little pouch and can be worn around the neck. I got the pulse ox at walgreens and we are using it more during his exercise routine.

If you are trying to get yourself to a better place of being able to function through out the day, exercise can help but you need to know your limits. The best advice I can give is start very slow. MAYO only recommended for my son 1 minute a day for bike riding 3-4 days a week. Then increase it, 1 minute a week. My son uses a recumbrent stationary bike. To build up core muscles while standing up, you can do the same thing by standing up or walking for 1 minute 2-3 times a day. After you are finished, you can take your heart rate if you have a pulse ox meter.

[Katybug]

I push myself when I have to for appointments, vet visits, etc. , but I find that I pay for it 10 - fold in the long run. My body heals faster when I rest. If I 0ush myself through bad days, it usually takes me even longer to recover and get back to functional.

[Jan]

I told the doctor I saw at the Mayo's autonomic clinic 10+ years ago that I did pretty well at home, not walking far and that I felt sort of OK at home but it was hard to get out of the house for long. I thought I was improving and this was good.

She told me if I don't push myself I won't get better. She said the body needed to be taught how to be upright again and that the body will learn to adapt to almost anything. I had adapted to limited activity. She encouraged daily walks. Go further every day. It was hard but I am no longer house bound. It was the best advice I ever got. Baby steps, do it gradually.

As for heart rates, people who exercise try for higher heart rates to improve their heart. 220 minus your age is the standard. I don't see how our high heart rates would damage our hearts. Of course it is different if you have a heart condition, and you should check with your doctor but all the many docs I have seen have said I would have no heart damage due to POTS.