Leg exercises important

[lieze]

I wish I would have known this as a new POTSie or any time during my POTs journey.

https://www.google.com/amp/s/blog.frontiersin.org/2018/06/07/neuroscience-leg-exercise-brain-nervous-system-health/amp/

[lieze]

I’m doing a lot of searching related to nervous system in general and also vagus nerve trying to determine if there might be things I can do for myself. 

Came across this article indicating the importance of load bearing exercise.

i hope it helps someone and I don’t mean to stress anyone. If you cannot get up I understand maybe you could try leg exercises seated or lying. 

I had a horrible time over the summer where my blood pressure was just so wacky. It ran high if I got up shot higher. But for me things change or cycle.

I check it periodically to keep an eye on where I am since that incident. Right now I am 106/67.

In comparison at a trip out to a doctor appt a week ago I was 137/85. I felt so hot in that office by the way. 

But for example I might tolerate just standing up from where I am and shifting weight back and forth for a short while. It wouldn’t burn too many calories and would exercise my leg muscles just a tad. 

[Sushi]

1 hour ago, lieze said:

Came across this article indicating the importance of load bearing exercise.

i hope it helps someone and I don’t mean to stress anyone. If you cannot get up I understand maybe you could try leg exercises seated or lying. 

I am doing a cardiac rehab program at a very good medical facility. They recognize and accept that I have NMH and that any standing exercises are not suitable for me. So I am doing only recumbent leg exercises, alternating between 3-5 minutes of exercise and 5 minutes of resting. With this routine I have been able to very slowly build up my leg muscles. The therapists add no more than a minute a week to my routine and monitor HR and oxygen after each few minutes of exercise. I'm thrilled that this is working as it is increasing my overall stamina and ability to stand. The key here is “slow” and that is something that most exercise programs don’t respect.

[lieze]

Fantastic Sushi. I’m so happy to hear of your progress.

[p8d]

Exercise has been vital to my (limited) improvement.  I was extremely ill, 84 pounds, on TPN, could only stand for a couple of minutes and housebound.  I started with PT at home with stretches and 1 pound weights and 3 minutes on a stationary bike. After a year I started doing a water treadmill at a PT facility.  That helped a lot with lower leg strengthening.  Like @Sushi my PT has me increase by minutes a week.  3 years later I am still doing PT but now use the bike, rowing machine and regular treadmill at home (I am still housebound).  I also do strength training everyday.  It’s been, and still is, *extremely hard work* but I will never let myself get so debilitated again and exercise is key.  I still get bad flares and have to back off on exercise but I keep at it no matter what.  My brain fog in general is much better but that flares with too much activity too. I really appreciate the link to the article, thanks.

[Sushi]

1 hour ago, p8d said:

It’s been, and still is, *extremely hard work* but I will never let myself get so debilitated again and exercise is key.

You said it! And not only is it extremely hard work but it is such a delicate balance between too much and too little. If we try this we are bound to miscalculate sometimes and “pay,” but I discovered the hard way how much I both need a reasonable degree of muscle strength and how much muscle strength helps with OI and general stamina. We are also going against the tide as the misapplication of “Graded Exercise” has created a common belief among many patients that ALL approaches to exercise are detrimental. Graded Exercise tries to lump us in with people who are simply deconditioned and pushes us too fast and with the wrong types of exercise with damaging results for those with dysautonomia. Leg muscles are vital to pushing venous blood back up but we have to be oh so careful in how we try to strengthen those muscles. Cardiac Rehab is 36 sessions in the States but that is just the beginning. I will need to continue working at this at a local community center gym and make it part of my life.

[Pistol]

@Sushi, @p8d - I have found the same to be true for me, especially this 

8 hours ago, Sushi said:

And not only is it extremely hard work but it is such a delicate balance between too much and too little.

I have found that certain exercises DRAIN my energy ( anything upright or strenuous ) where as others GIVE me energy ( like mild weightlifting, rowing or reclined aerobics ). However - whatever the exercise may be, if I do not stop in time I will pay.  Personally I have tried - but not succeeded - with increasing my exercises steadily. I seem to get stuck at the same max every time and if I go above I take a set-back. 

[p8d]

@Pistol I completely agree on the fact that some increase energy and some drain it. I find that any, as long as it isn’t too intense/resistance/lengthy, helps. It took me years to find the balance between aerobics days (1) and rest days (2) or I would crash terribly.  I also had to back off on recommended duration and resistance.  I can’t seem to increase beyond 20-30 minutes of aerobic exercise 3 times/week no matter what.  I am now adding in 10 minutes of aerobics, treadmill, most days but if I wake up fatigued I take a day to just do strength training.  I still overdo it and pay big time, probably once a week but I am absolutely terrified of losing the ground that I fought so hard for.  I am supposedly doing a modified Levine protocol but that’s way too intense for me.  I started with it but had to find my own balance with my PT.  We are such fragile but amazingly strong people. Getting on the bike etc was/is so hard.

[Sushi]

3 hours ago, p8d said:

@Pistol I completely agree on the fact that some increase energy and some drain it. I find that any, as long as it isn’t too intense/resistance/lengthy, helps. It took me years to find the balance between aerobics days (1) and rest days (2) or I would crash terribly.  I also had to back off on recommended duration and resistance.  I can’t seem to increase beyond 20-30 minutes of aerobic exercise 3 times/week no matter what.  I am now adding in 10 minutes of aerobics, treadmill, most days but if I wake up fatigued I take a day to just do strength training.  I still overdo it and pay big time, probably once a week but I am absolutely terrified of losing the ground that I fought so hard for.  I am supposedly doing a modified Levine protocol but that’s way too intense for me.  I started with it but had to find my own balance with my PT.  We are such fragile but amazingly strong people. Getting on the bike etc was/is so hard.

I also agree. Increasing my aerobic time by about 1 minute per week seems to be my limit now—but when I increase I don’t go from say a five minute session to a six minute session—rather a five minute session followed by five minutes of rest, and then a one minute session followed by five minutes of rest. Yes, can get tedious but I take a book! At the moment I am up to a total aerobic time of 24 minutes plus about 3 minutes on a leg press machine, stretching and a lap around the gym before and after the session. I am only able to handle two sessions per week as I need a lot of recovery time in between. I also use hand weights at home. I am also determined not to lose the ground I have gained. It has helped with overall stamina.

[green]

I found both the article and the original research paper to be misleading on this topic.

The introduction to the research paper says:

"The overall results support the existence of a link between reduction of exercise and muscle disuse and metabolism in the brain"

There is an implication in the news article something about leg exercises is special, but we never see any explicit discussion of this in the original research paper.

Of course, the leg muscles are key to a wide range of exercises such as running, walking, swimming. Of course, if you lose the ability to use your legs your options for exercising are greatly restricted, you will have atrophy. Of course, if you exercise less you will have a less healthy brain. Consequently, many people who lose the ability to use their legs as much as they used to, lose both some muscle mass and some brain health. 

But nothing I found in the research article indicated that you couldn't take care of your brain by exercising your non-leg muscles.  

I just comment on this because, for a long time, I was stuck on this idea that I HAD to exercise my way out of POTS or at least, I had to do intense cardio to keep myself from losing my cognitive abilities. It took a long time to realize that over-exertion played a role in keeping me perpetually feeling worse than I needed to be and that moderation was important. 

I am not saying you have made this same mistake I have, but just wanted to flag a particular mistaken way of interpreting science research on the relationship between exercise and being healthy, for the sake of others. 

 

[Pistol]

15 hours ago, green said:

It took a long time to realize that over-exertion played a role in keeping me perpetually feeling worse than I needed to be and that moderation was important. 

How true, @green ! It took me years to understand this! Since Exercise is recommended for POTS I thought if I exercise a lot then I will get better. The truth is the exercising ( and generally ignoring the alarm signs of my body ) led to the POTS becoming much, much worse. Today I know what activities I have to avoid ( anything requiring me to stand for more than 2 minutes ) and what helps ( rowing machine - it uses most muscles in one sitting exercise! ) and also that on bad days moving around the house is exercise enough. 

[Stark]

On 12/29/2019 at 8:30 AM, p8d said:

I was extremely ill, 84 pounds, on TPN, could only stand for a couple of minutes and housebound. 

This is basically my current situation. Did you manage to get off of TPN? You've convinced me that I really need to start doing SOME kind of limited exercise

[p8d]

I am so sorry to hear that you are so ill @Stark I did get off TPN after 6 weeks.  I hit some magic number—95 or 100 pounds—but I cannot recall exactly what. I am petite so I guess the gastroenterologist had something in mind.  To be honest, I don’t recall a whole lot from that time, I was so very ill.  I know that I was told to drink Boost which just made me sicker and eventually I found a protein drink that I drank a lot of between meals with high fat and lots of potatoes for carbs. I think it was Garden of Eden something.  The exercise was extremely difficult and it still is because I suffer very badly from fatigue if I overdo it.  Having said that I credit exercise with 33% of my improvements, meds with 33% and stubbornness with 33%.  As I said above, I am still housebound but I am stronger and I will never willingly go back to being so weak again.