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Anyone Else In My Position?


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Okay, I have heard over and over that exercise can help POTS. But I just don't get how I am supposed to exercise when I feel SO BAD. Anyone else in my shoes? It seems like there is such a wide degree of symptoms, and severity of symptoms, that sometimes I feel so alone. I have been thinking about getting a YMCA membership to swim (even if I just went once a week) but then I think about how everytime I get out of my chair, my heart races so fast I can't stand to even be up for more than a couple of minutes. That's how bad it is. It's even hard for me to type right now (just so weak and feeling "wierd").. ANYWAY I know this is redundant but just wondering how many of you out there try to exercise and see any benefit for it?... I've tried so much medication wise that this is about a last resort before going to Toledo.... thanks

:P

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Hey kansasgirl8605,

I feel for ya!!! I want to exercise so badly but I get so weak easily and my legs eventually give out and I have balance/dizzy issues and this is coming from an Aerobics instructor over 7 years. I was fit as fit could be, I taught around 10 classes a week during college and now I can hardly make my bed without getting weak and lightheaded. My heart doesn't race as much now on toporal XL but I feel, as I said before extremely fatigued. Before I was diagnosed with POTS I went to a dizziness rehabilitation center recommended to me by my ENT. The people there said they didn't know if they could help me but they'd try. I went there for many months and tried my best but the exercise therapy just made all my symptoms worse. I was starting to use all my leave at work and had to stop going because I was so much more dizzier. I am in the same spot as you, I really want to start doing some strength training for my muscles but just about everyday I struggle to keep my stamina going, it's like do you want to make your bed or make a meal I can't do both.

I use to teach regular Cardio/Strength training Aerobic classes as well as Senior citizen aerobic and strength training classes. There was a routine I'd do called sit and be fit for Senior citizens, I learned it from the Sit and be Fit series I guess it was on TV? Anyways I saw it on youtube if you want the link just let me know.

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Thanks. I think i'm going to try swimming first. I think, for me, that would be easiest on my body. (At least I think that is true, I could be wrong). It's so strange that so many of us were athlelets/in good shape before we got POTS. I played 4 years of college volleyball and ran 2 miles a day. Now I can't even walk up and down my basement stairs. Thanks for sharing with me....

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It is hard to find the right balance between exercise and rest. You just have to try it and see what you can handle. Keep track of how much you are doing so that you can track improvements over time. This will encourage you to keep going!

You mentioned exercise being a last resort before going to Toledo. Just to let you know, if you do go to see Dr. Grubb, he'll tell you to exercise. :P He told me to push it to the point that I actually feel worse, because it will help in the long run.

Exercise does help me, I think. It's kind of hard to tell, but I keep at it as I'm able. Before dysautonomia really flared up for me, I was a year-round competitive swimmer. I swam 3 miles a day, 5 days a week, plus did weights 3 days a week. I was very active! Today a 25 yard walk is pushing it, and some days that is impossible. In the past a 2 mile walk would have been pushing it.

Here are YAZ exercises that many people find helpful. If you are able to do more than that, do try! Many members here also find yoga exercises helpful. I hope you can find the right amount of exercise and the right type of exercise for you.

All the best,

Rachel

P.S. By the way, I don't remember if I ever welcomed you to DINET. So, welcome! I'm always here, just quiet sometimes depending on brain fog/energy level.

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Exercise has definitely helped me. I do pilates and walk every day (I probably should push myself more but at least I get this in!). Exercise for you at this point may be 2 minutes of floor exercises/day. I have read that recumbent bicycle exercise is great for POTS patients--if you have access to one. Anything you can do to strengthen your legs and torso especially can help by reducing blood pooling. But you may have to start very small and with exercises that allow you to be lying and sitting initially.

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Exercise has definitely helped me. I do pilates and walk every day (I probably should push myself more but at least I get this in!). Exercise for you at this point may be 2 minutes of floor exercises/day. I have read that recumbent bicycle exercise is great for POTS patients--if you have access to one. Anything you can do to strengthen your legs and torso especially can help by reducing blood pooling. But you may have to start very small and with exercises that allow you to be lying and sitting initially.

Thanks for the advice. As of right now, there's no way I could even do the recumbent bicycle. I'm thinking swimming would be my best option, but even that may only be 10 minutes at a time.... gotta start slow I guess :)

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Hey kansasgirl8605,

No problem, let me know how the swimming exercises go and do make sure you bring your Mom or hubby with you too. Sheesh it is weird how so many people get POTS that were previously very athletic! I even thought at one time maybe that had something to do with it? but all the Docs I've seen say there are no possible connections.

Thanks Rachel and MomtoGiuliana for all these other exercise tips, I need to try them :)

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i am a HUGE fan /advocate of swimming and/or any other type of water exercise, both in relation to getting/ staying as active/ conditioned as possible in the midst of dysautonomia and also b/c i've also been a fish. i too was very athletic in my "past life"...competitive swimming, rowing, long-distance running, triathlons, weight training, etc. i also coached & taught swimming for years, and i miss it all SO much. b/c i was able to keep up with athletics during my initial years of diagnosis/ fainting i really never imaged that i would have a life without frequent swimming, running &/ or rowing. they weren't just sport for me but very much therapeutic at times as well. but ah well. just one of the many ways i've been (and continue to be) reminded that i'm not the one in charge of my life. but i digress....now it's considered a good day for me if i can walk to the bathroom halfway down the hall rather than use a commode next to my bed, and at times in the past two years i've been lucky to be able to brush my teeth in bed, so pushing/ exercise/ conditioning can certainly undergo radical changes over time.

i will echo many of what others have already said/ recommended. and i've written quite a bit in detail, as have some others, about different degrees of exercise/ conditioning that i've been able to do over my years in dysautonomia land as i've run the gamut at varying times. so....if any/all of those of you who are a bit newer on the forum i'd highly recommend doing a search on exercise, or on a particular type (i.e. swimming, pilates, etc) as you'll readily find a lot of past discussion on the topic.

i've always been one to push rather than hold back, sometimes to the point of going overboard, but in many ways this has helped me stay as well conditioned as humanly possible in the context of my overall declining health. and my initial baseline combined with my efforts to maintain what i can over the years have likely kept me from declining more rapidly, so even as someone who hasn't gotten "better" with exercise, it's still helped me. so unless a doctor tells you something is an absolute no for you, i just really encourage you to push as much as you can to find what works for you. even if it's just something "little" for just a few minutes. anything is better than nothing. as a former athlete this may be tough for you to swallow; i know it was for me. it seemed almost silly to me to do anything for just a few minutes that seemed like "nothing"; even if my body was wiped out by it, i had a tough time getting past lining things up with what i would have considered working out in the past.

swimming is grand if you can do it in any capacity. and you may be surprised at how good you feel in the water. for me it obviously didn't hurt that i was very comfortable in the water to begin with, but for years swimming was an escape for me in the midst of illness such that it was literally the only time i didn't feel ill. i would get tired/ worn out but not dissimilar to how anyone swimming might be tired/ worn out. i felt so good while in the pool that i had to be careful not to do too much b/c i would then be a mess once i got out and would pay for it for hours/ days after if i did too much. for me the balance was figuring out how much i could do without my recovery period extending from hours to days. quite literally, though, i was able to swim a mile at times when i couldn't walk more than a few feet. i would have to use my wheelchair to get to & from the pool but in the water i entered into a fantasy world of better health, if only for a short period. so it was a great thing for me on many levels. can you tell i miss it?? i haven't been in a pool now for over two years as i'm now dependant on various IV lines & tubes that make getting in the water a no-no, but i still dream of it, and swimming is tops on my fantasy wish list (ideally at a beach, but i'll take anything)! if you're not into swimming itself but the water still appeals to you, other water exercise might be worth considering too (water weights, water aerobics, water jogging/ walking, etc.)

if swimming ends up not being your thing though, don't let yourself dismiss other possibilities solely b/c swimming "should" have been best (and thus letting yourself think that nothing else will work either). and yep, as rachel mentioned, grubb will definitely tell you to exercise. obviously there is a fine line to pushing to far, but in general your heart racing isn't a reason not to exercise so try to draw from that athletic mentality from your healthier days to push yourself to the max of what you can do now. i'm not trying to minimize how bad you may feel at times, just encouraging you to push through it to some degree b/c that may ultimately help you to feel better.

hope this helps,

:) melissa

p.s. another thing that has helped some people feel safer in pushing to exercise is participating in a cardiac rehab program. there are different types/ levels of these but it's something else you could do a search on to hear of others' thoughts/ experiences and/or is something you could ask your doctor about (as you usually need a referral).

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I can relate to people's frustrations about having used to been active. I was a cheerleader, colorguard captain, on the dance team....I can actually usually do a decent amount of exercise now, as long as I have someone with me. Another thing you might think about is a rocking chair, for days when you really want to do something but just can't seem to stand at all. I hope you find some things that work for you. I like swimming, but I'm not a very strong swimmer so it's hard for me to get a good workout that way! So like other people said, start slow, take someone with you. And only you know what your body can handle, so baby steps! Good luck!

Meg

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Hey kansasgirl8605,

No problem, let me know how the swimming exercises go and do make sure you bring your Mom or hubby with you too. Sheesh it is weird how so many people get POTS that were previously very athletic! I even thought at one time maybe that had something to do with it? but all the Docs I've seen say there are no possible connections.

Thanks Rachel and MomtoGiuliana for all these other exercise tips, I need to try them :)

Really? The doc at the mayo told me there was a connection between POTS and women who were once athletic.. hmmm different opinions I guess.

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i can assure you all that my POTS has nothing to do with being athletic in the past! LOL!!! i have always wanted to do sports in my childhood/adolescent years, but could never succeed! now i know it was due to POTS... hehe, but now i am really overweight and basically unhealthy but would like to get healthy in that aspect... but like many of you say, the tachy kills me! i sweat so much when i attempt to exercise and just walking to the bathroom my heart feels like it will pop out of my chest!! :) .GRRRRRRRRRR!

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Y'all try not to fall out of your chairs laughing... but I have a ThighMaster! It's great!

On days when the recumbent cycle is too much, I usually can handle at least 20-30 reps with it.

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I was another "in great shape" person, powerwalking, bicycling, wearing a size 8 and really fit. I miss it a lot - actually both the size 8 and the really fit.

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