Weyland Posted April 13, 2017 Report Share Posted April 13, 2017 I was diagnosed in Oct with pots ,and life has gone down hill ever since.. I'm very deconditioned now and have muscle loss . Every time I get up and around my hr goes up to like 150. It's hard to do anything . I've become short of breath because of pots . Does anyone else have this ? Anyways I've tried a few beta blockers ,but my body doesn't tolerate them well . My cardiologist is at Mayo and he treats pots patients . He says I really need to start exercising, and I know I do . But with being short of breath and the high hr it's hard . I'm ordering a recumbent bike to start things . The main question is ,are any of you having luck exercising ? and has it helped your pots symptoms ? Quote Link to comment Share on other sites More sharing options...
yogini Posted April 13, 2017 Report Share Posted April 13, 2017 Yes. At first I started by riding a bike for 5 minutes. Do whatever you can do. Even doing stretches on the floor is a good start. That's what I did on my very worst days. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted April 13, 2017 Report Share Posted April 13, 2017 Yes, but when my heartrate was that high there was no way i could do cardio. I started by just doing leg lifts in bed and forcing myself to sit up/stand. It probably took about 3 months of doing that before i was ready for any cardio. For me i had to do a slow transition into exercising. It's hard at first but it gets easier as time goes on and it takes a lot of courage, persistence, and determination. But it is totally worth it in the end. Quote Link to comment Share on other sites More sharing options...
marcus99 Posted April 13, 2017 Report Share Posted April 13, 2017 Yes. The combo of two things which help me the most are exercise and low-fat eating. I have not tried any meds because in my country they have zero experience with POTS (netherlands). I was the first person in my hopsital to get this diagnosis (after that I asked them for a tilt table test after finding out about POTS online). So I cannot rely on them for guidance and need to self-experiment. I have been doing exercise for about 4 months now. I started at twice a week and currently doing six days a week. In the start my HR went from 80 to 160 within a minute of standing, now it goes to about 120~ish. And still improving. Be sure to start exercising in horizontal position (rowing / recumbent bicycle) then to a normal bicycle and then to walking. Check this link for an example of a training schedule for POTS: http://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf Also make sure to eat as much calories as possible from easy to digest foods. Quote Link to comment Share on other sites More sharing options...
yogini Posted April 13, 2017 Report Share Posted April 13, 2017 I switched to yoga and that is much better for me. I have done cardio at times, but with yoga I can walk out of a class and immediately do another activity. I don't feel depleted. Though I used to have to sleep after class, when I first started, I never got headaches, etc. like I did with cardio. And my POTS symptoms are minimal now, so it did the trick. Quote Link to comment Share on other sites More sharing options...
statesof Posted April 14, 2017 Report Share Posted April 14, 2017 Yes and No. I finally found an exercise protocol that I can do sustainable, and it does seem to help me feel like my brain is actually getting enough blood flow to it, and it is good to start building my body up a bit physically. But it doesn't actually affect how often I get head-rushes, or how far I can walk at any given moment, so I feel its good for my body, but I haven't seen it have any impact on my POTS symptoms. Quote Link to comment Share on other sites More sharing options...
cmreber Posted April 14, 2017 Report Share Posted April 14, 2017 For me, getting started with exercise was extremely difficult, but after starting slow and working my way up, I am doing SO much better now. It has taken a lot of patience and perseverance, and there are still some days I have to accept that it might not happen the way I want it to, but over all, it was the best thing I could have done for myself. Quote Link to comment Share on other sites More sharing options...
Morrolan53 Posted April 16, 2017 Report Share Posted April 16, 2017 For me, yoga worked best. I had a lung infection right before getting POTS so I was very deconditioned. With yoga, I would follow online videos (search doyogawithme). I could do it at home do as little or as much as I felt up to and just ignore standing poses until I was conditioned enough. Now, on good days, I can even play squash. Swimming is also a good one if you can. Quote Link to comment Share on other sites More sharing options...
lll Posted April 21, 2017 Report Share Posted April 21, 2017 Pilates + fludrocortisone+salt+increased water intake have helped me quite a bit get back to feeling like my old self again. I still get palpitations when I go up a flight of stairs, heat intolerance, and all of the other symptoms that go with POTS, but I am feeling way less lightheaded which is a start. Good luck! Quote Link to comment Share on other sites More sharing options...
TCP Posted April 27, 2017 Report Share Posted April 27, 2017 I started on the recumbent bike and floor exercises. I did these for many months and increased the times and types of exercise. My knees began to hurt with the recumbent bike (I have EDS), so I opted for gentler movements and not too much stretching on the joints. I have had to have a break from longer sessions because of migraines, but I hope to pick up again if I can get them under control. Take it easy at first and gradually build up. Quote Link to comment Share on other sites More sharing options...
JaniceSmith Posted April 29, 2017 Report Share Posted April 29, 2017 I have heard about it many time, but do'nt know its procedure. Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted June 14, 2017 Report Share Posted June 14, 2017 I have peddles I use while in a reclined position-similar to recumbent bike but stationary and in doors. It also allows me to recline as much as needed. As someone noted above it has not really changed my ability to function but it helps my overall health and conditioning. Debbie Quote Link to comment Share on other sites More sharing options...
WinterSown Posted June 16, 2017 Report Share Posted June 16, 2017 I exercise everyday. I walk my dogs which I do well with, especially late at night when it is darker and there are less distractions. Last year, prior to diagnosis, I was getting dizzy. I was diagnosed with Vertigo and did a course of Vestibular PT which did fix the rocks in my head, lol, but also made me stronger and taught me some endurance. This year, after diagnosis I had now also to do a round of Pelvic Floor PT and feel even stronger--this time around the PT doctor was aware that I had POTS so he tailored my exercises to assist me further. Kudos to my PT doctor. At home I have a balance board, stretchy straps, weight balls, resistance rings. large inflated bouncy balls, and leg weights. I certainly don't use them all everyday but I do a few things daily. I also like to put on the music and dance. I am far better off exercising, it's been vital to me getting up off of my bed faster. I can walk father, I have greater endurance and can handle pre-syncope much better than before. And, I look pretty good too. Physically there has been some toning and for me that is an emotional upper. It's a win/win. I'm stronger and I feel prettier. Quote Link to comment Share on other sites More sharing options...
Lily Posted June 19, 2017 Report Share Posted June 19, 2017 I remember reading somewhere that consistent cardio exercise increases blood volume and mitochondrial function, but only if you do it consistently for several weeks at least. If I can find the article again I'll post a link. Personally I feel better after I exercise, Tired, but not POTSy fatigued. Any little bit you can do will be of benefit. And keep pushing your limits. That is the only way to increase your limits. Quote Link to comment Share on other sites More sharing options...
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