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It's Time To Get Serious With Exercise (I Got My Gym Membership!)


jangle
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The recent talk about exercise, and the success TXPOTS had with it has gotten me even more motivated. It's time to get serious with exercise instead of sitting idly by and doing nothing. I encourage other people to join with me. Let's finish this thing!

Read this study http://hyper.ahajour...ourcetype=HWFIG

I'm starting off on the recumbant bike, I was already doing 3 miles of jogging, but then I realized my heart rate was 200+ bpm and I don't think that's safe. I'm trying to keep my HR between 160-170, and right now I can only do that on the bike.

Of course in the study I just referenced, they started off jogging 30 minutes straight and progressed to 50 minutes straight, I think that's what we're going to have to aim for.

(maybe it is safe to jog?)

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on the bike i can keep my heart rate around 170 on a recumbnant bike but not so lucky on the tredmill

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I agree--if these subjects were all military recruits they must have only been mildly bothered by OI. For them jumping into rigorous exercise may have been possible. I can't see that this could apply to more severely affected patients.

However, definitely exercise is important, whatever level it is done at, there will be benefits (whether or not it improves OI). For me, my EP has always encouraged me to push myself with exercise.

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My doc at mayo is all about exercise as a treatment for pots. He recommends starting extremely slow- like 10 minutes a day on the bike every day and very gradually increasing the time. He says the biggest mistake we potsies make is trying to do too much time too few days a week. He said most of us will try to do 20 minutes or more 4 or 5 days a week and wonder why it is isn't helping. He says the key to exercise in pots is very short duration but every single day. He said even missing one day will set you back. Just some suggestions. I too am starting an exercise regime. I'm like you in that 10 minutes on the elliptical at hardly any resistance and my hr is 180 bpm. Not to mention the hyperventilating I do!

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After severe dizziness and vertigo, I was my sickest NOT exercising. Of course, if you are throwing up and can't walk, you just can't do it! When I was still dizzy, though, I rode a stationery bike, and walked my dog short distances, and tried to be very careful. The treadmill makes me nauseous, but I am actually on the Elliptical machine at the YMCA twice a week now. I started out slowly, but actually even though I sometimes have to push myself to go, I am so much better in the long run. Just listen to your body, don't over do it. It will help with the blood pooling in your legs. I am now up to 3 miles again. I had a set back last winter with a bad sprained ankle; I'm so accident prone, falling and running into things, but I am determined that this won't get the best of me!! I also walk my dog short distances every day, unless it is pouring rain!

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Here's another article related to exercise. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2343225/

Since so many on here were very fit before they got sick, it's interesting that these articles note that there is evidence that some people could be TOO fit which they theorize can lead to OI.

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Here's another article related to exercise. http://www.ncbi.nlm....les/PMC2343225/

Since so many on here were very fit before they got sick, it's interesting that these articles note that there is evidence that some people could be TOO fit which they theorize can lead to OI.

Ya that is interesting to note, however I've since been deconditioned since my athletic time period and I haven't recovered at all. Also, this doesn't seem to be a common occurrence in high level athletes. It's possible I guess, but the results from the other studies seem to suggest that moderate exercise seems to help us.

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Hi everyone... I have some questions about exercise. I just bought a recumbent bike but haven't used it yet (just git it yesterday) I know the research is clear that exercise is a definite requirement for recovery. But I'm at a loss at what to do and how to start.

I have autonomic dysfunction neuropathy- immune related. Just went through rejection of IVIG nfusions after the 5th of 12 led to anaphylaxis. When doctor ordered my blood work it showed that my very aggressive antibodies don't play nice at all and almost all my systems were affected. Most of my levels have gotten better except for my kidneys (still abnormal function ) an bladder which would make sense that they'd go together. Thyroid is hyper but only by TSH levels, T3 and T4 show hypo so not sure what's going on there. I also am on antibiotics because my labs showed a pretty high white blood cell count but not sure where the infection is? Also learned at Mayo that somewhere along the way my body has lost its ability to have a fever. Normal temp is 96-97 and doesn't go up ever to fight infection, no one knows why or how this happens but assuming that why the white count is still elevated.

Anyway- exercise. I do leg exercises twice a day and arm exercises twice a day with resistance bands. But how do I even begin cardio. I can't walk. My limit standing is about 45 seconds before syncope. If I'm lucky. I do get some exercise because I crawl around the house but even with crawling will occasionally get syncope. Standing HR before syncope is in the 160's or 170's. When I crawl it's about the same. Three times a day I do stand- with my hubby next to me- next to the bed and I don't allow myself to get to syncope but will sit when it's imminent (I can usually tell) or he will lie me down if I miss it. I know I need to be vertical but I've consistently stayed at those 30-45 seconds before it happens. I've had 7 concussions in recent months with some cognitive dysfunction now so I'm done taking further chances with my brain. I just can't. So how do I start an exercise program? Would I be safe on a recumbent bike, obviously starting slowly and gradually increasing? I know I NEED to do this or I won't get better but feel caught in a vicious circle. Further head trauma is NOT an option. What is the point of beating this if I can't communicate or think? I'm already devastated by the levels of cognitive function that I've lost and the changes I've seen in myself since the Post Concussive Disorder DX. But I can't live this way forever either. I feel trapped? Does ANYone have some advice for me on how to get started? By the way, after I left inpatient Mayo I did 2 weeks in acute rehab and they wouldn't even give me an out of bed exercise plan. But if I don't do something, I will be like this forever.

I'm just getting frustrated with the lack of help and answers for recovery for me. Anything anyone has to offer would be so appreciated. I have to start somewhere. Oh, and it's important to note that my rehab assessment showed very good muscle tone, strength and zero atrophy which you'd expect from someone in my state. I'm very hyper mobile (EDS) flexible and joints very prone to dislocation.

Thank you for any input. I'd appreciate it so much. Oh, and I'm a 37 year old female. Thank you, thank you and thank you!

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Gosh Jenn Im so sorry your having such a horrible time with this illness. I see a lot of your posts on here and I'm really inspired by your ability to be positive despite how debilitated you are. I pray you will find a cause and a cure! Are you able to sit up without syncope? If so maybe have hubby hold you on the bike while you pedal and see how long you can go? I imagine you will be less likely to syncope on the bike then standing because pushing the pedals will be helping to push blood up to your heart. I definitely think you are moving in the right direction with starting exercise because I don't think we'd ever get better laying in bed 24 hours a day. Good luck to you and let us know how it goes!

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Thanks Julie... I do have sitting up syncope, but it takes longer. My sitting limit is about 15 minutes or so I'd guess? Not sure how t would be if I was exercising. I do get up and sit several times a day. And like I said, it sounds so silly, but I crawl around a lot. We have three levels of stairs so I have to crawl or scoot to get around. I do get syncope crawling as well but since I don't have far to fall I don't worry too much about head trauma- except on the stairs- then I always have someone with me.

I try to spend at least 4-5 hours a day out of bed... But inevitably I will faint or BP plummets and I'm back in bed. I know I will never improve this way. Even the weeks I spent inpatient at Mayo they would not let me out of bed. I feel in the middle of a Catch 22.

They've yet to determine the cause of my autoimmune problem- I keep thinking maybe that will be the real key to the problems...

Thanks so much, Julie

Jen

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Does anyone else have a problem with getting their heart rate up using the recumbent bike? I can increase the tension and peddle fast and my heart rate will go up some but really I don't ever feel like I am getting the kind of aerobic workout I used to do pre-POTS. The flip side of that is that I can't run for any length of time because of my joint pain so jogging isn't a good answer for me either.

jenglynn - Have you talked to the docs about maybe prescribing cardiac rehab for you? I know there are programs at all the local hospitals near me for cardiac patients. The therapists would probably have to work with the docs at Mayo on a specialized plan for you but I don't think that is unusual and I'm pretty sure someone on this forum recently did this. I hope you are able to get some exercise in but please start really slowly...I started at 5 minutes on the recumebnt bike and I am not nearly as prone to syncope as you are. Maybe try just 2-3 minutes until you are comfortable with that then add a minute a week to let your body adjust?? I like the idea of doing it with your hubby there just in case, until you know how your body will react. Happy pedaling!

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Jenn- It would seem like exercising while sitting, as opposed to just sitting, might make you less likely to have a syncopal episode because, in theory at least, you would be activating the muscle pump in your legs which might help keep blood moving back up toward your head/brain. A recumbant bike might work well for you, but I'd definitely have your husband right there and only start with a couple minutes.

You also noted that Mayo gave you a bed exercise program? Are you still doing that? Hopefully it would be working to keep your legs and core strong so I'd keep up with that as well.

Katybug- You might notice when you're taking your metoprolol relative to when you are exercising. I was on an extended release form of propanalol for awhile and had the same problem as you are noting...couldn't get my HR up even in cardiac rehab. My cardio told me to change when I took my meds so that I took it at night instead of in the morning. That way when I was exercising mid-afternoon the next day it seemed like I could get my HR up better to a more acceptable range. You might ask your doc about that?

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Does anyone else have a problem with getting their heart rate up using the recumbent bike? I can increase the tension and peddle fast and my heart rate will go up some but really I don't ever feel like I am getting the kind of aerobic workout I used to do pre-POTS. The flip side of that is that I can't run for any length of time because of my joint pain so jogging isn't a good answer for me either.

Hi Katy, I have this exact difficulty. It's really hard for me to get my HR above 125 no matter how hard I pedal on the bike. Doing anything standing up, however, my heart rate sky rockets pretty easily, but I get pretty bad joint pain as well so I'd rather do the bike if possible. I just don't know how much good I'm doing myself if I can't get my heart rate up higher than that. It's only been about a month that I've been exercising on it, so maybe this is just temporary.

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Chaos - Thanks for the suggestion...I hadn't even thought about the drug action on the situation. I'll ask my cardio about it.

dizzyblonde - Yes, I can get the heart rate up pretty easily when I'm upright, too. I was thinking in the shower this morning (I do my best thinking there :P ) that I might try using the steps in my house as "workout equipment". I have a really hard time going up the steps (standard POTSy out of breathe and tachy) and it really gets my heart going so I wonder if that might give me better conditioning. I, of course, will build up slowly so I don't hurt myself but it is easier on my joints than other upright exercise but it is still pretty good lower body toning, too.

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  • 2 weeks later...

Glad I'm not alone! The weirdest thing is that when my bpm is that high I don't hardly sweat and don't feel short of breath at all. It is definitely a cardiac hypersensitivity thing for me. One time I had an adrenaline rush on a stationary bike when my HR was already 130 and after the rush it went up to 220. It was scary

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Jen, I am so sorry on all you are dealing with. I just wanted to say that I did not do cardio for the longest time after getting POTS. I walked slowly, did stretches, then floor Pilates. I did each exercise building up in 5 min increments. I also did exercises in the pool - not swimming at first, but rather gentle exercises. Eventually I felt well enough to exercise in a sitting position and moved to a recumbent bike, and I did that in 5 min increments too. Anything more and I would have migranes and tachycardia for days. I know that the research is on cardio, but I found great benefit in any exercise I have done. Even now though I can work full time, I can't run, do the elliptical or any other excercise standing up, other than yoga which is gentle and not cardio. We are all so different and I think it is important to take care of yourself and coordinate with your dr. I wish you the best!

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