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tilly
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Can anyone help to give me some ways in which i can express the difficulty i have with sustaing activity .......

I have tried to be a part of an cardiac exercise class and found it virtualy impossible to sustain any activity ... I am already compriomised with the heart rate and can't take a full breath in a lot of the time also needing to keep sitting and taking a rest ..... and so when i try to exercise i am in a lot of difficulty .....

I have tried to express in my words the problems i have but feel it sounds like i am finding one excuse after the other ...... even after they have read about the condition it seems there is still no understanding of how you are limmited unable to function like anormal person ....

has anyone else ever found themselves in this situation .....

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Slowly, slowly, slowly! I am a total turtle bum when it comes to exercise and I still get sick. I know it helps, but there is no other way but slowly. If you watch Biggest Loser, do it with a pint of ice cream- not with a treadmill! POTS people need their own category of what they can do. These are not excuses- if you do too much you will be sick. No one should encourage you to be sicker than you are. Everything takes a billion years with us. Don't get discouraged!

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I like to try and keep "active" no matter what phase of the moon my POTS seems to be in. There are indeed periods when I am completely bed-bound, so during those times simply stretch -- while lying on my back -- may be all I can do. As I am able, I rather enjoy doing "floor work". In my case I can do tiny ab crunches (just barely lifting my head and shoulders off of the ground) and various iso-metrics that aren't really about MOVING but contracting and pushing against my own body. My goal is to try and keep as much muscle tone as possible, given my orthostatic constraints, so that should researchers find something that helps, I will have a body that will be able to take advantage of it.

Some folks here on DINET are able to Pilates, or Yoga better than a full on aerobic class. Lately I have enjoyed doing some simply pushups and leg kicks in my backyard spa -- not a good idea if you have syncope.

When it comes to exercise, I remind myself that putting a load of laundry in the washing machine is the equivalent work out of a full on kick boxing class for me ... and I have to take serious down time to rest and recover after even those "simple tasks." I try let my intuition guide me (and not my judgmental-mind) as to what things I can do on any given day.

Good luck finding something that works for your unique healing journey.

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Exactly!!!

It could, also, be that you are trying to the point where you are so worn out you might need some long-term rest before you can even start to try. At one point I wore myself out so bad I was literally bedridden for 5 months. I'm talking 5 months of needing help just making it from the bed to the bathroom.

Right at the moment, Hubby got an elliptical exerciser - for himself mainly - and I tried it. I made it 15 seconds!!! Now, after 3 weeks, I am up to 1 minute - 3 times a week. I don't know if I will ever get above that. It sends my heart rate up to around 250. But I am trying. If this is it, so be it.

I have had to remind my sisters of this: "normal" people have to do exercise to try to get their heart rate up to 125-130... Ours is like that most of the time if we are moving at all. Now, how would THEY feel if theirs did that??

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When I was at Mayo, the neuro there said the best exercise I could try to get would be anything involving being upright. He said walking was the best. He wasn't concerned about cardiac conditioning, just about keeping my body used to being in an upright position. Some days I can't do any walking except to the bathroom and back, but other days I can walk for 5 or 6 miles. Every day is a little different and I try to not blame myself if I don't get much activity on certain days.

The Mayo neuro also suggested riding an exercise bike, so we bought one. At least my husband can use it! :) For some reason, it's much easier for me to walk than to ride that thing for just a couple minutes. It wears me out for hours afterward.

I like Earth Mother's suggestions for recumbent exercise and stretches too. I do think if a normal person had to live in our bodies for even a day, they would be shocked at how difficult basic activities are.

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I'm not a medical doctor or anything but I try to push myself to the limit I have. I go as far as I can and then a little further. I try walking, strength training with hand weights, and I was doing leg exercises until that was simply making me too dizzy. The walking will strengthen my legs enough, according to my dietician.

It's very hard, and I find that if I have a day where I can't do it, I don't. I don't beat myself up about it, I just don't do it. I'll do it tomorrow. So long as I get in all the other stuff I do (parking at a distance, taking the stairs, walking a long ways around instead of short cuts, staying on my feet instead of crashing immediately at home) then I'm okay.

So far, I'm still at a decent weight and losing, so I'm quite happy. I just need to stop forgetting my belt in the morning because one of these days I'm going to feel a draft on these legs. XD

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Hi Tilly

Yes, I agree that exercise is one of those areas where there can be a complete lack of understanding by both doctors, friends and family. You are not imagining that it is harder for you than the average person - it really is. Your body is already working harder than most just being upright, so any sort of activity will put additional strain on you. Plus for many of us, it takes longer for our hearts to return to a normal rate and recover.

I wish I knew how much activity was the right amount to do for maximum benefit without risking a set back from overdoing it. I'm not sure there is an answer - it depends on how you feel that day.

I suppose I err on the side of caution and tend to do a little less than I could manage. I am an occasional attender of an aerobics class for the very old and unfit. I have no shame anymore! Otherwise I tend to stick to things I can do at my own pace so I don't overdo it.

Best wishes

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When I was first diagnosed with POTs (my current complications ruin it!) I was given an exercise program designed off of my some of my test results.

The goal was concentrated on keeping my heart rate within the range they gave (which was purposefully quite low) and keeping it steady. The cardio included a 5-8 minute warmup, then 10-15-20 mins (depending on how far in the program I was) of exercise, then a cool down of another 5-8 minutes. It really was to keep me from overdoing it. Light. The focus was strengthening the legs, exercise consistently, and not overdo it.

So pool exercising (kicking while holding onto a noodle) was the Best(!). No gravity to fight! Light weight training (all siting down) felt really good, too.

Some days, if I felt good or crazy enough, I'll do belly dancing. I've only just started but I already love doing it, it's so much fun! I'll wear a heart rate monitor and take many breaks. It's the only form of exercise that calls me to it! Or if I'm too ill to dance or use the video I may just practice a move (such as a belly roll) while sitting, laying, or walking around.

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Yoga, and walking and pilates are my thing. I can walk for 30 minutes or so but I can do a 1.5 hour yoga class. Go figure! I need a wall for balance, never put my arms over my head and try not to stand still but other than that it really works for me. Good luck!

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Exercise is the definately helper of my POTS - infact it seems to get it back under control and in remission - at least so far although who knows.

I start off tiny and build up slowly - go to hard too early and you'll go backwards and pay the price... I can run now again when only less than a year ago I was fainting at work and unable to sit for more than 10 minutes without symptoms.

I postulate that exercise is beneficial specifically in hyperadrenergic POTS.

These forms of POTS appear to be caused by a number of related factors:

1. Impaired catabolism of angiotensin II due to genetic factors leading to reduced neuronal nitric oxide and norepinephrine potentiation, failure of vasomotor nerves and excessive vasoconstriction/postural hypertension. MSNA is increased.

2. Increased angiotensin II levels due to chronic inflammation from conditions that increase C-reactive protein expression or other inflammatory markers - results in the same scenario as above and is often seen all be it an asymptomatic way in patients with inflammatory conditions like Ankylosing Spondylitis. MSNA is increased.

3. Reduced peripheral and/or central expression of norepinephrine transporter protein resulting in increased norepinephrine and transduction, increased peripheral resistance, cerebral vasospasm or reduced central MSNA activity. THis could be from adherant hypermethylation of the NET gene promoter.

All of these mechanisms could benefit from exercise - which increases nitric oxide bioavailability considerably, reduces the serum levels of inflammatory markers like C-reactive protein.

The reasons for hypermethylation of genes in cancer and in theory in POTS is unclear, but research has indicated that in at least some situations chronic stress or inflammation could result in hypermethylation as well as low folate diets.

Again, inflammation can be improved with exercise.

Why exercise improves peripheral poolers is less clear - perhaps again its beneficial for the immune system - which is implicated but not proven as the cause of this form of POTS.

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Thank you all so much for your replies ..... you have all made valid points ... i tire of explaining just how much more difficult it is for me to sustain activey .......

the complete lack of understanding leaves me stressed and this wears my already wornout body wornout even more .....

the frustration i feel at this makes me not want to bother anymore and just withdraw .....

i try to keep as active as possible around the home ... and i like to do stretching exercises low key and do them sitting or lying down .....

in truth i am not up to exercising at all because it is to difficut you have no control over the already high heart rate, out of breath even before you begin ....... take today, it's one of those days when you cant even stand up .......

tilly

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Guest brianala

Without midodrine there is no way I would be able to exercise, but as hard as it is the exercise really does help!

I started playing roller derby back in June and after skating for 3 hours a day twice a week I am exhausted - but the next day I actually feel healthy! Getting regular exercise has decreased my daily symptoms and given me a lot more days where I feel normal again. When I miss a practice (like I did this week because I was sick), I feel like I have slipped back down the hill a bit, and it can take me awhile to get back into gear.

Now, I could never go to the gym and run on a treadmill for any length of time, but for some reason being on skates is easier for me even though it's a really tough workout (probably even harder than running on a treadmill). I've built a lot of muscle, especially in my legs and calves, and this seems to help with my symptoms.

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I've found the best thing I can do is walking, on flat roads (no gradients), not carrying anything. On good days I can walk for a few miles like that. On bad days I can't even get out of bed.

Also I find drinking while walking helps.. little sips.. Also distracting myself, either taking a dog for a walk or giving myself a mental project or topic to think about so I don't dwell on how much I really don't feel like moving.

If I was in a cardio class like you, I don't know how I'd cope! Especially with people misunderstanding what is wrong with me! I remember going to the gym when I was younger and just feeling so bad about myself, that I was weak, felt like I wasn't able to "push through" the pain barrier that my personal trainer talked about, but soon realised I wasn't like everyone else!

Janey

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I understand completely. It is a fine balance that each person needs to find for himself. If I push it too hard then I am out of it for weeks so my best advice is to listen to your body. Know when to say no! You have to get used to the fact that we aren't able to do the "normal" activities of those without POTS. It's a very tough lesson for me and I am still trying to deal with it. There are days I can do Yoga and there are days I have to crawl to the bathroom. Do the best you can on everyday and pay attention to what your body is telling you. Forget everything you were told about what you should do for exercise....it doesn't apply to you anymore.

I hope you find your balance of exercise!

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I have to add that when I'm taking care of myself (dishes, laundry, food runs- daily maintenance, ect) away at college I rarely have the energy to even think of exercising. It's only when I live at home and can concentrate on taking care of myself that I'm able to push it and be successful.

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Hi Tilly,

I totally sympathise. One of the hardest things about pots is that you often look really healthy and well, even when you feel like absolute death, so people who remember you fit and full of energy forget that you can have trouble doing the most normal activities, let alone exercise. THe amount of exercise I've been able to do has improved a million-fold so I hope you get some improvement too soon. I found that gradually increasing the amount of walking I did was very helpful. Bushwalking is probably the best thing for me at the moment since it bumps up my heart rate more that just walking on a flat surface. Pilates and yoga are very good for muscle tone, maintaining core strength and improving circulation. I love swimming so have been able to work back up to doing 1-1.5km at a time. For everything it's been a process of finding the balance of just extending myself, but not overdoing it. It might be a good idea to limit any adrenaline-producing exercise like aerobics for a while. I can swim for 45 mins or so, but 5 minutes of running and that's it, completely stuffed for the day. It sounds like exercise has been quite a social event for you in the past, maybe you could get a group to do yoga with you once a week? I was quite self-concious when I first found myself so physically limited, but you've just gotta do what's best for your body and the people who really matter will understand and support you regardless.

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>When I was first diagnosed with POTs (my current complications ruin it!) I was given an exercise program designed off of my >some of my test results.

>The goal was concentrated on keeping my heart rate within the range they gave (which was purposefully quite low) and >keeping it steady. The cardio included a 5-8 minute warmup, then 10-15-20 mins (depending on how far in the program I >was) of exercise, then a cool down of another 5-8 minutes. It really was to keep me from overdoing it. Light. The focus was >strengthening the legs, exercise consistently, and not overdo it.

Reef Diver,

What was the rationale for keeping your HR low and steady? Did you doctor say intense exercise could make POTS worse in the long run or hinder recovery?

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Green,

At least that is how I understood the rationale. I could be mistaken!

Instead of pushing myself with intense exercise and then likely need days to weeks of recovery he saw the benefit of slow, almost daily, progressive exercise. Kind of like the tale of the turtle and the hare? If I overdo it I feel worse the next few days and am unable to exercise. Therefore it hinders my overall progress. Whereas when I did small, controlled amounts most days of the week I began feeling better. No more overdo, crash n burn, rest n recover, and then repeat!

Keeping my HR steady, I believe, served a couple purposes. First, it made me control my HR while exercising to minimalize swings. No jumping up and down and all over the place it loves to do so much... and is so tiring. Second, it made me monitor and learn the movements/ activity levels in correlation to their HR levels. Now I realize how much kicking on a pool noodle I can do to stay within HR range limits and when to back off even when I'm just paddling around with family and don't have my wristwatch on. Same could apply for walking in the mall. If you know the ranges and the times you are to be in them, know the amount/speed/ type of walking that would get you there you also know when you should sit down before you draw on the nasty effects of overexertion.

My brain is foggy today. I hope that makes sense. :)

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For me, the saving grace of exercising has been a stationary recumbant bike. It allows me to built up my quads (supposedly the stronger the quads the easier it compresses the blood upward) and get some activity. The chair has a back and arms so if I do get dizzy I won't fall right off and hurt myself like on a "regular" stationary bike and the resistance can be adjusted. Another option is the bicycling pedal exerciser. It's just the pedals basically and you can sit and watch TV and pedal and strengthen your legs or you can pedal with your arms.

I also like to walk on days when I feel stronger.

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Again thanks so much for all of the replies to this topic .... the one thing i find most upsetting is this .. the way you end up feeling bad about yourself, because of their lack of knowledge ..... i have tried and tried .... it literally takes me all of my day to just look after my self ...

i don't ever feel up to it but i try to do a little whenever i can .... i think the best thing for me is to go it alone .... it's better than being judged by people who just don't know or understand .........

tilly

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For me, the saving grace of exercising has been a stationary recumbant bike. It allows me to built up my quads (supposedly the stronger the quads the easier it compresses the blood upward) and get some activity. The chair has a back and arms so if I do get dizzy I won't fall right off and hurt myself like on a "regular" stationary bike and the resistance can be adjusted. Another option is the bicycling pedal exerciser. It's just the pedals basically and you can sit and watch TV and pedal and strengthen your legs or you can pedal with your arms.

I also like to walk on days when I feel stronger.

I heard that stronger calves helped pump blood up, but have never heard anything about quads.

This intrigues me because my POTS symptoms developed in high school when I was running cross-country in the fall and track in the spring. Symptoms would persist during the off-seasons. However, when I went to college in California I started a regime of recumbent bike riding - I would push the resistance up as high as I could take it, and really grunt and strain for 30 minutes to an hour. That was the only exercise I did and my freshman year in college I had the best GPA, and felt the best that I ever have. I felt so good that I joined the college cross-country team, and then my symptoms got worse again.

I hate the thought of giving up cardio, because the only times I ever feel like myself are in the 1-2 hour grace periods between finishing an intense run and the post-exercise crash. However, I think I'm seeing a pattern here. Between my own history, and others' comments about cardio and high HR. I am going to commit to a month of no weight-lifting and no running. Just high resistance stationary biking.

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I dont think POTS is caused by deconditioning, but I do believe that physical activity does improve the condition in some case but not all.

I do also believe that the heart rate increases is important. In my case I need to push it a little to allow my body to adjust and stop overconstricting to tiny amounts of exercise.

This might be of interest:

http://aboutmecfs.org/Conf/IACFS09Surprise.aspx

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