Exercise

[erikainorlando]

I think I see a common thread for a lot of people who do alittle better with this. It looks like exercise is a real help in overcoming dysautonomia (POTS). All you brilliant minds out there...is this true? And if it seems to be why is this?

Thanks!!

Erika

[firewatcher]

According to some of our doctors, exercise strengthens the skeletal muscle pump and aids the circulation back to the brain and heart. It negates any ANS weakness from "deconditioning" and increases blood volume. Exercise keeps the parts of the body that do work properly, working properly (like routine maintenance on your car.) Newer theories are coming out that what it is actually doing is "desensitizing" the autonomic system and lessening the tendency toward over-reacting to "normal" stimulus.

If you can do it, and it IS HARD!, do just a little. As much as you can do without pushing yourself. Once that does not "over-stimulate" you or your recovery time improves, push a little harder. Very slow and steady is better than doing a lot because you feel good one day and crashing for a week afterward. For us, exercise is like allergy shots for our ANS; we gradually expose ourselves to what we could not tolerate before and slowly build up a tolerance to it. I knew that I would not do it regularly without some sort of "oversight," so I pay a physical therapist once a week to do Pilates with me and a friend who has MS. We are well matched for physical ability right now. I am gradually adding a one mile walk and am now up to Pilates once a week and walking two days a week. It has taken me a year to get this far without major setbacks and crashes. If I feel like I've overdone it one day, I'll skip the walking. It takes me a whole week to recover from a 50 minute floor workout with Pilates. I am making slow and painful progress, but I know that this is an expense that I will have to continue indefinitely if I want to maintain my current level of function. Someday, I might be able to more, but right now, I'm just thankful that I can do what I can.

[Mrs. Burschman]

I think it can be helpful. Deconditioning can be a cause of POTS, so it helps make sure that's not the case.

Also, if pooling is an issue, building up the leg muscles can help improve circulation. And there's always a psychological boost that comes with being able to get some exercise.

But it might also be that those of us who are able to exercise aren't as sick to begin with, not that the exercise made us better.

I don't think exercise has any relationship at all to my POTS. I've always been active, even before I started to have symptoms in my teens, and I've kept it up even with dysautonomia. I don't think it's helped or hurt either way. It certainly hasn't helped me "get over" it.

You'll have to see what other people say, though. They might have different experiences.

Amy

[Stormie74]

I can't do cardio right now, but I just joined a physical therapy place that allows me to come in and do weight exercises on their equipment. I've been going for about three weeks now, and I go slowly, but I notice an improvement already. I'm not trying to push myself too quickly, but slow and steady. I am hoping it helps... I can see already that I feel better when I work out.

Caron

[futurehope]

For me, I was in good shape, walking daily and going to the fitness center daily when POTS symptoms started .

I push myself to do my pilates stomach DVD or my floor exercises for my abdomen, and walking and minor weight lifting for legs and arms.

I probably will be pushing myself for the rest of my life, because if I did not, I would not being doing much.

As time goes on (over the years), I can tolerate less physical activity before I crash.

We are all different and possibly have different causes for our POTS. In my case, the bodily system that does not work properly is still present, despite exercising. I may be compensating, but it never goes away. I can get worse at the slightest provocation, such as a flu shot, not enough sleep, eating garbage food, etc.

BTW, I advocate doing exercise, as much as possible. That has been my motto before I got POTS, and still is.

[janiedelite]

When I was at Mayo earlier this year, the doc recommended walking as the best exercise because it strengthens the skeletal muscle pump. But also when we are upright, there is a constant attempt by our bodies at trying to maintain orthostasis by our nervous system, however weak that attempt might be. But they believe that our nervous systems can be exercised regularly and strengthened. This is why he advocates tilting the head of the bed. I'm sorry if this explanation is overly simple. I'm sure someone else can do it better!

I was pretty much bed and wheelchair bound prior to going to Mayo. I started implementing a walking routine by walking just to the end of the block and back. But I did it every night. I also brought someone with me in case I was too weak to get back. Over the next 6 months, I was able to SLOWLY increase my walking until I can now walk miles at a time. I still have POTS, and am very symptomatic but I believe the exercise has increased my ability to be upright for longer periods of time. Now, if I miss a day of walking I have noticeably worse symptoms the following day. I do believe I've reached my limit of symptom improvement via exercise, however.

There are many causes of POTS and dysautonomia. I wonder if this exercise theory works best in those with post-viral/autoimmune POTS?

[kayjay]

I think thankful has a point. I was so undiagnosed for so long and I kept pushing myself- I could have really hurt myself. I fainted once on my eliptical, and i can't imagine how hard my heart was working.

I have to be careful with exercise b/c I don't want my adrenals to kick in ...ever!!

Pilates is good for me and I do very light weights... I just know I have had flares from pushing too hard. before I was diagnosed I worried that I was lazy- just couldn't get my act together.

I had a dvd with jumping jacks on it... a jillian michaels dvd.. it about killed me.. but I kept at it like a fool b/c i had no idea tha tI should never try to do jumping jacks.

Also I do use weight... but once I carried them upstairs and had a real problem!. Mayo clinic said no "loads" up stairs. We are moving our laundry room out of the basement for this reason!

I also use a strap to stretch my hamstrings and do leg circles and such even laying down when my hubby is watching tv.

[firewatcher]

There are many causes of POTS and dysautonomia. I wonder if this exercise theory works best in those with post-viral/autoimmune POTS?

I can tell you with certainty that I have always had some form of dysautonomia. I've had Gym teachers yelling at me to get my "lazy B*** moving!" because I could not run even one lap around the track without dry heaving and nearly passing out! I got myself into REALLY good shape and still had a walking HR of 180+ bpm. I have never broken an 18 minute mile. Exercise can get you so far, but it won't cure you. It merely allows a greater ability to function.

[Stormie74]

I was just diagnosed a few weeks ago, but in learning about POTS, I realize how long I have had it. I, too, remember back to my days in school... and I am now 53~ and gym teachers telling me to work harder to keep up, especially when running laps. I always wondered how it was that I was always the last one, the slowest one, etc., and wondered how so little exercise could make me feel so badly when everyone else was going, going, going.

You know, it's almost funny, but one of the things I would love to do is walk a long distance. I'm not talking five miles... I'm talking across the state. I've read books about people on long walks, and it sounds so exciting~

[erikainorlando]

Yes...I am wondering too if post-viral POTS have more of a tendency for exercise to help. I can definately do more than I used to...and the more I do the more "I can do...I am a post-viral case.

I do remember the docotrs before diagnosing me talking about deconditioning. I laughed because I had been playing tennis frequently before getting POTS. I am wondering if there really is something to the retraining of the nervous system. I do have to say...I get very sick from activity tho...I cleaned the floor this afternoon and then got soooo sick I couldn't function...anyone relate??

Anyway....I love hearing about anything that cold osssibly help.....I am sick of bing sick....!!!!!!!

Thanks all and Happy Halloweern.

Erika

[ramakentesh]

Most of the times Ive had relapses of POTS its been at times when Ive been exercising hard rather than the other way around - running 3 miles three times a week and then one day being unable to sit or stand without feeling jittery or nearly fainting.

So as most people here would attest I dont think lack of exercise has anything to do with the cause of POTS.

However, I believe that exercise - graded exercise at least - seems to help. In strengthens the body and seems to allow for it to adjust to more stimuli for longer.

There are many causes of POTS and dysautonomia. I wonder if this exercise theory works best in those with post-viral/autoimmune POTS?

There are many suggested causes of POTS but none are proven. As an example some patients with what would clinically be called Hyper POTS test positive to a3 alpha receptor antibodies.

Until doctors have a certain understanding of the pathyphysiology of POTS and the mechanisms involved - and more importantly there is concensus about these causal factors and there isnt now by any means - then doctors can tell us definitive things about POTS and exercise - until that time its only guesswork and trial and error.

Exercise increases the bioavailability of nitric oxide which in a subset of POTS patients was found to be inappropriately low causing increased orthostatic sympathetic activity.

[mountain girl]

I was very dedicated to exercising for about two months after the dr suggested it, but I had always been active before I got sick. I was using a elyptical machine and started at 2 or 3 mins to 15-20 but after two months, I could not tell that I felt any better. I am able to work, and my job requires alot of walking, so I feel that is all the exercise I can handle.I do take the steps at work some for exercise, but it seems exercise is good but not too much or too strenuous and each person has to find what it right for them.

[janiedelite]

Yes, I was really active prior to getting POTS too. I don't think inactivity had anything to do with the onset of my POTS either. And like Rama, I've noticed a worsening of POTS symptoms if I push myself too hard (but especially if I get too stressed). And I can't do much walking during those flares. So lying in bed for a few days sets me back. It can be a vicious cycle, but I believe overall I do have more energy if I can manage an hour or so of upright activity each day.

Erika, I don't know how you can function at all, living in Florida. I can't go out in humid or hot weather without really feeling it. It would be tough to do any type of exercise regimen in that climate unless I could do it in my home. I had tried pool therapy, but it seemed that the work it took to get to the facility, shower, and get into the water and then go back home again was more of a workout than actually being in the water.

[lmt033167]

I've noticed this too; I don't have POTS though. I have NCS and OI and noticed in April when we went to the beach for a week heat intolerance and a huge decrease in sweating. At the time it didn't make much sense to me, but since my dx in August it makes alot of sense.

Before this year, I did all of the housework & yardwork, even in the heat of the summer during the middle of the day in this swamp land of Central W FL (near Tampa). It seems weird to me now even walking from the car to the store makes me sick to my stomach and weak to where I feel like fainting right then.

My memory is a bit foggy and trying to piece together my life and when my problems started has been tough. I remember at 9 fainting and being humilated to the point I didn't want anyone to know I was "different", in 8th & 9th grade during PE, I would faint and sometimes even hurt myself falling outside. I distinctly remember during my 9th grade dance being so dizzy I fainted during awards for calendar couple I won [ugh] embarassing

I do know I've had bouts off & on of exercise intolerance; [not sure what it's called?] I'll go for periods and have no problems. For example Dec 2008 - May 2009 I had no problems, I was doing a walking/running interval training program, but sometime in May I got really severe and couldn't even walk around my house.

Maybe it all has to do with each of our symptoms and what our triggers are?

[beggiatoa]

A little cardio helps me but if I try to push myself, it's not pretty. I also can't lift heavy weight as I feel like **** afterwards. I do them anyways, so I feel terrible most of the time. It's very frustrating as I cannot build any muscle mass and small gains in strength, I crash.

[Intuit]

>Exercise increases the bioavailability of nitric oxide which in a subset of POTS patients was found to be inappropriately low causing increased orthostatic sympathetic activity.

Exercise improves the release, uptake and turnover of NO in the peripheral vasculature.

Inappropriate mopping up of that nitric oxide signal is an important issue, as it points to the associated problem of cleaning up energy metabolism free radicals that can cause aggregate damage in muscle and nervous system tissue.

Think: low glutathione status.

An aside: I've been reading this forum on an off for a while. You have a couple of members who have come tantalizingly close to the central metabolic pathway issues underlying the vast majority of autonomic system disorders, back in late 2006 and as late as 2008. For some reason, these clever members put out the critical pointers in posts meet with dead silence from the rest of you.

I find that curious.

[erikainorlando]

Intuit -

Honestly, I have to add that the dead silence from me is because I don't understand what you are saying. I am a computer programmer that worked towards a masters in couseling psych... I am not sure why but I am missing hte critical pointers you are referring to....I have had two autoimmune disorders now and would love to understand. Can you explain?

Thank you.

Erika

[MomtoGiuliana]

An aside: I've been reading this forum on an off for a while. You have a couple of members who have come tantalizingly close to the central metabolic pathway issues underlying the vast majority of autonomic system disorders, back in late 2006 and as late as 2008. For some reason, these clever members put out the critical pointers in posts meet with dead silence from the rest of you.

I find that curious.

Glad that someone has some new answers! Please explain!

[futurehope]

Intuit,

I get the feeling you are being intentionally vague and I'm finding it annoying. What are your qualifications to comment about the potential causes of POTS, and which ideas are tantalizingly close to the truth?

If you care about people and their problems and POTS people in particular, you would STATE EXACTLY the pathways and the scientific basis of your theories instead of insinuating. Do you want to help us, or not?

I cannot feel comfortable with anything you have said so far because I feel like someone has "dangled a carrot" in front of me, and expects me to grab it. I am not playing that game.

Please help us if you can. If not, I will ignore your vague comments in order to spare myself the frustration of trying to decipher the meaning.

Do you have POTS, BTW?

Do you have a reason for being vague?

ETA: If there are other forum members who "understand" what Intuit is trying to say, please elaborate. I'm too annoyed to bother with insinuations. TIA

[potsgirl]

I must second this emotion.

[Guest tearose]

Sometimes we are silent because we are trying to understand. Sometimes we have relapsed and just can't respond.

When someone new starts sounding so sure of their "cure" those of us who have struggled for years may choose to not respond...so we are slient.

Exercise is not a do it all or not at all thing and Intuit just doesn't understand it...in my opinion.

For "normal" bodies, exercise will build endurance and strength. In my body (and others here) we exercise and can loose endurance and strength.

I may be dong fine for a while and then my nerve fibers just give out. Explain that please!!!

I get tired of those who think they have the answer. Do they really think we have not tried it all at least several times?

Trying to be tolerant...

tearose

[futurehope]

Thank you Tearose for helping me try to be reasonable. Maybe Intuit is a newbie? (ETA: Yes, Intuit is a newbie.) Unfortunately for me, being vague usually denotes lack of "solid" facts. So, I'll leave it at that, and hope Intuit finds useful answers.

[Guest tearose]

Well, I have more to say...

This fact must be shared.

I was in a remission and managing better and this means I was walking 3 days a week on a treadmill for 20-30 minutes and gardening a bit. After two somewhat busier than "normal" days of activity I was feeling a bit woozy. I decided to PUSH through it. I worked in the garden a little and suddenly I felt like my body gave out, I turned to jello... BIG MISTAKE. I managed to totally tear away my internal pelvic muscles and nerve fibers and wound up in pelvic collapse and agonizing pain. I was not getting adequate oxygenation and blood flow and pushing did more harm than good. I pushed and tore myself up internally!!

Not only did it take 7 hours of pelvic reconstruction with mesh to repair me...I needed two blood transfusions. Then, I needed months of healing including physical therapy, cardiac rehab and occupational therapy because I lost brain function.

I do believe that our nerve pathways and cells try to regenerate, heal and bypass problem areas. I do believe in healing and miracles. I am still hopeful but must live with reasonable limitations to not do further damage. I also have come to learn that science and medicine do not have all the answers. The ANS dysfunction some have is not as predictable and black and white to treat as some people want to believe.

With peace and love,

tearose

PS futurehope, you're welcome

[futurehope]

Tearose,

You managed to totally tear away your pelvic muscles?! From gardening? Did you ever find out exactly what you did wrong so as to never do that to yourself again? It sounds like a nightmare.

[MomtoGiuliana]

Oh tearose, you have been through so much.

What makes dysautonomia so confusing is that it does not have one cause so therefore not one treatment. Exercise and pushing yourself may make sense for some, but not for others.

I have a friend with a different type of dysautonomia than I have. We both go to the same dr. He tells me to exercise as much as I can, and tells her she should not do anything strenuous.