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Pistol

how to increase exercise tolerance

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Hello. I have hyperadrenergic POTS and am very exercise intolerant and have severe OI but I always exercise daily. Recently I started using a rowing machine and am able to tolerate this activity very well. My goal is to reach 2 minutes on the lowest setting. I am not quite there yet but my question is this: to increase my exercise tolerance should I increase the TIME that I use the machine or should I increase the RESISTANCE SETTING and decrease the time? In other words: is it better to do light exercise longer or harder exercise for a shorter time period? 

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I followed Dr. Levine's exercise protocol. He instructs to start recumbent and increase the time and frequency before intensity. I won't lie, it is difficult, and it hurts, but I am so much more functional now than I was 4 years ago. 

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I do a modified Levine protocol supervised by my PT.  She had me increase time first, then resistance.  I love my rowing machine.  I listen to my body and now that I am able to do longer periods I take two days off between aerobics, sometimes one day.  On those days I do strength training.  If I don’t take the time off to recover I get the severe exercise intolerance. It took a lot of trial and error to figure out this regime.  My PT says my goal is 50 minutes every other day but that’s a long way off yet.  Some days I only do ten minutes because I just can’t do more, it depends on what else is flaring and other activities are going on.  I found that increasing the resistance too fast aggravated my coat hanger pain so keep that in mind.  Keep it up!

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You increase the setting to make it a little more difficult but you don't increase the time until you are quite comfortable at the higher resistance. I don't use a rower but I use a resistance bike at PT where they slowly build you from beginner with no resistance to 'better' with resistance. Most important is to not overdo it so that's why you don't increase the amount of minutes when you're just starting to strengthen. Always stop before you feel it's a drain because you will get turned off from it--go at your pace and move to higher levels whe you think you can handle it. Also, go back to lower levels when you need to. Some days it's better to set it to three instead of six, we  all have extra-low energy days--it doesn't make sense to do a lot when you can really do just a little. Listen to your body and keep at it! I truly believe that exercise, in any form, is going to increase your stamina and strength. You look better for it, too.

 

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I think I would also increase the time before the resistance. I think the total amount of time spent moving in some way is more important than intensity. Small amounts frequently is more beneficial for circulation & preventing blood clots etc. I am thinking of breaking up my recumbent cycling into several shorter sessions per day for this reason.

B xxx

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1 hour ago, bombsh3ll said:

I think I would also increase the time before the resistance. I think the total amount of time spent moving in some way is more important than intensity. Small amounts frequently is more beneficial for circulation & preventing blood clots etc. I am thinking of breaking up my recumbent cycling into several shorter sessions per day for this reason.

B xxx

Yes, that's fine. The benefits of exercise are accrued.

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My experience may be different from others, but I found that I would have to do at least a moderate amount of cardio time (15-30 minutes) for exercise to not make me feel awful afterwards. When I would try the stationary bike for 5 minutes lets say, it was extremely hard on my brain and body, when I just decided to do 15 just to see how I would feel, it seemed to be sustainable and I actually felt much better afterwards.

Everyone's body is probably different.

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@Pistol I had my consult with Dr. Raj earlier today and he talked a lot about deconditioning, exercise intolerance and how important it is for us to try and push ourselves through even the smallest amount of physical activity (I struggle immensely with this).

I actually asked him the same question you had - do you increase time or resistance? He said he tells all of his patients to increase time rather than resistance at all, and they’ve apparently seen a lot of positive results! I wish had taken down the name of the study he referenced in regards to this too - oops!

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Not sure how bad things are for you and I had a sudden onset and I couldn't walk around the block when I first got POTS.  Though I didn't faint I just got extremely out of breath.   I would literally practice standing, doing the leaning against the wall exercise.  I got a stretching video and did exercises on the floor.  I would be winded after doing 5 minutes.  I also practiced walking up and down the hallway of my apartment building.  Gradually the stretching got easier and I could make it through a 30 minute video.  Then I switched to swimming, bike, same thing - 5 minutes at a time.  I used to have to sleep through the whole weekend to recover.

My advice is go slow.  Meet your body where it is and hopefully over time you'll feel better.  Now I'm not on any meds and can do advanced yoga.

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I will add that in retrospect I wish I had never done cardio.  It's just not well-suited for my body. Other people have a lot of success with it.  Try a few things and find what works.

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@jklass44 - thank you for sharing this info, I appreciate the advice. I am currently able to do 1 minute of rowing twice a day, that is my limit. Some days I can only do 30 seconds, but I do it every day. I feel a lot better since doing that. 

@yogini - I used to do different exercises for each group of muscles and would do lying down exercises when I was bad. That took a lot of time and often I skipped them. The rowing machine seems perfect for me b/c I can do all muscles at the same time. It really gets my HR up ( in a good way ) and I already am getting less short-of-breath. I have not seen a difference in orthostatic intolerance - still not able to walk or stand for any significant time at all. But my exercise tolerance definitely has improved since doing the rowing. 

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4 hours ago, Pistol said:

 

@yogini - I used to do different exercises for each group of muscles and would do lying down exercises when I was bad. That took a lot of time and often I skipped them. The rowing machine seems perfect for me b/c I can do all muscles at the same time. It really gets my HR up ( in a good way ) and I already am getting less short-of-breath. I have not seen a difference in orthostatic intolerance - still not able to walk or stand for any significant time at all. But my exercise tolerance definitely has improved since doing the rowing. 

How long have you been doing it for?  And are any of your other symptoms better - like sleep, etc.?  Have you tried the leaning against the wall exercise?

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@yogini - yes, I do the leaning-against-the-wall exercise when I need to prepare for any upright situation. I used to get PT for orthostatic exercises - they could not get me above 2 minutes standing while holding on to something without becoming severely symptomatic. Even after 6 weeks of in-home targeted exercise. But - I no longer take seizures or have syncope, my BP is controlled and I am able to do the rowing machine - all thanks to meds and IV fluids. 

The exercise definitely has helped my insomnia and appetite, as well as cognitive issues. I think it is b/c of the improved circulation. Plus - I feel proud of myself afterwards!!!! 

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7 minutes ago, Pistol said:

@yogini - yes, I do the leaning-against-the-wall exercise when I need to prepare for any upright situation. I used to get PT for orthostatic exercises - they could not get me above 2 minutes standing while holding on to something without becoming severely symptomatic. Even after 6 weeks of in-home targeted exercise. But - I no longer take seizures or have syncope, my BP is controlled and I am able to do the rowing machine - all thanks to meds and IV fluids. 

The exercise definitely has helped my insomnia and appetite, as well as cognitive issues. I think it is b/c of the improved circulation. Plus - I feel proud of myself afterwards!!!! 

That's awesome.  If you keep doing it I am sure you will continue to improve.   maybe if you add in the lean against the wall exercise regularly and try to increase it-even by 30 second increments - you might be able to improve your tolerance to being upright over time.

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On 7/12/2019 at 11:27 PM, jklass44 said:

 I had my consult with Dr. Raj earlier today

Sorry for taking the thread off topic but WHAT DID HE SAY ABOUT THE HEADACHES????

On 7/13/2019 at 10:37 AM, Pistol said:

The rowing machine seems perfect for me

I have also thought about trying a rowing machine, as it is favoured by Dr Levine with rowers having the biggest strongest hearts etc.. BUT I understand rowing is or can be associated with a mini valsalva at some point in the stroke, & with that being what precipitated my illness I am hesitant. I have never actually used a rowing machine even when I was healthy - do you find yourself performing a valsalva at all whilst rowing, or that it increases lightheadedness at all?

At the moment I just do recumbent bike, & arm weights (not at the same time!)

B xxx

 

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@bombsh3ll - no, I do not do the Valsalva during my exervises since I am still on the lowest resistance setting. I could totally see how advanced rowers might utilize the Valslava to get extra strength for rowing. My machine has 8 settings and I am using #1 - it uses all of my muscles and joints, including core, but without too much effort. For me it is perfect - and I got the idea from this forum! 

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1 minute ago, Pistol said:

no, I do not do the Valsalva during my exervises since I am still on the lowest resistance setting. I could totally see how advanced rowers might utilize the Valslava to get extra strength for rowing.

Thanks that is really good to know! What type of rowing machine do you have? I know the concept 2 is used by Dr Levine's lab. There is a company near me that hires them for home use.

B xxx

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@bombsh3ll - just a really bottom-of-the-line one I got online for cheap. I did not want to spend too much money before trying it out but it is good enough for my limited abilities. I started with just 15 seconds once a day but now am up to 1 minute twice a day, trying to increase more than that once I no longer get short-of-breath. 

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I have been using my Concept2 that hubby bought me for Christmas 2.5 years ago and love it.  No valsalva reactions at all.  

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1 hour ago, bombsh3ll said:

Sorry for taking the thread off topic but WHAT DID HE SAY ABOUT THE HEADACHES????

Honestly, not much. I was a little disappointed. He was honest with me and said that majority of his patients suffer from headaches but that he hasn’t found a way to treat them successfully. He suggested a few preventative medications - most of which I have tried already - like triptans such as Relpax, Axert, Maxlt and also Cambia. Other than that he said I should go see a neurologist (which I have, so maybe I just need to see a different one...)

He was all for the rowing machine though and by the sounds of it in this thread I think I might give it a go!!

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24 minutes ago, jklass44 said:

Honestly, not much. I was a little disappointed. He was honest with me and said that majority of his patients suffer from headaches but that he hasn’t found a way to treat them successfully.

That's a shame, I hope he is still looking!

The triptans are probably not for me, as they cause cerebral vasoconstriction plus my headaches are not migrainous, however I am considering naproxen which is another NSAID like diclofenac (I had to look up what cambia was).

Good luck with the rowing machine! I would really like to try one too without the massive cost of hiring one - 4 weeks at £65 pw is the minimum hire I think - and then find that I just can't use it at all. 

There is a gym near me which has the concept 2, but I know they have to call an ambulance if someone passes out, which would be really embarrassing & they probably wouldn't let me go there again. Still, it might be worth it just for a trial to decide whether to hire one.

B xxx

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5 minutes ago, bombsh3ll said:

There is a gym near me which has the concept 2, but I know they have to call an ambulance if someone passes out, which would be really embarrassing & they probably wouldn't let me go there again. Still, it might be worth it just for a trial to decide whether to hire one.

B xxx

The thought of going to a crowded gym and potentially passing out is already exhausting on its own! Ha! I wish you luck with it too - might be a good idea to take someone with you if you decide to do that trial run! xx

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3 hours ago, bombsh3ll said:

That's a shame, I hope he is still looking!

The triptans are probably not for me, as they cause cerebral vasoconstriction plus my headaches are not migrainous, however I am considering naproxen which is another NSAID like diclofenac (I had to look up what cambia was).

Good luck with the rowing machine! I would really like to try one too without the massive cost of hiring one - 4 weeks at £65 pw is the minimum hire I think - and then find that I just can't use it at all. 

There is a gym near me which has the concept 2, but I know they have to call an ambulance if someone passes out, which would be really embarrassing & they probably wouldn't let me go there again. Still, it might be worth it just for a trial to decide whether to hire one.

B xxx

You are far more courageous than i would ever be.

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