Keeping Up With Exercise

[davecom]

I've read a couple of you mention that after months of exercise you gave up on it because your symptoms did not continue to improve. I saw this comment in the Neuropathy Association FB chat today:

"Nicole Duffy

I have a dx of pots and have started the cardiac rehab but I don't know the cause of my pots. I'm 27 years old should I be so concerned with the cause or not worry and stick with the program and hope for the best? Thank you!

Dr Kinsella
you are in good company- most of the time we do not find a specific cause for POTS.
the lynchpin of therapy is fluid, salt and exercise. medication with beta blocker or others may be helpful. keep up with the exercise, as it has the best data to change your outcome."

I've been exercising now for 6 months and I've kind of gone into maintenance mode. I'm walking 110 minutes a day (split up over 6 separate walks, the longest of which is 40 minutes), exercise biking 35 minutes 4x a week, and doing leg weight lifting with light weights 2x a week.

I'm wondering if you guys think I should further increase what I'm doing. I feel like it's already a lot at this point and I'm not sure how much more I want to move forward on it if it's not going to further improve symptoms. Has anyone had success with symptom improvement that they attribute to exercise, more than half a year after starting exercise?

[artluvr09]

I always feel better when I exercise. I never really exreicsed for years but I finally got out of my boarding school and had nothing to do so I started exercising and I feel less disoriented and I feel lighter and floaty it only took me a month to start feeling better after I lost ten pounds A great exercise routine is the biggest loser game on the wii. I started off at light exercisie routines now I am at hard

[looneymom]

Hi Dave,

From most of the research, I have seen it suggest 30-60 minutes of exercise a day 3 to 5 times a week. With my son, when he was able to do it for a reasonable amount of time. We backed off to three days a week. He was doing physical therapy for 30 minute sessions. I really think this depends on what your body can handle. Some people can handle doing exercise five days straight. Exercise is really a fine line. I do believe it helps but needs to be done in moderation.

Rachel

[bellgirl]

I would suggest to never exercise to the point of exhaustion, and make sure you are properly hydrated even during exercise, because that is so important for us all. We are all different, but I believe I was worse when I didn't exercise, but I initially had issues with dizziness/vertigo, and it was really bad, and during that time, it was next to impossible to exercise. I decided on my own before being diagnosed, being a nurse that even if I got on a stationary bike, that would be good or take short walks with my dog. Now, with treatment for over 2 years, I do about 2-3 miles on the elliptical machine at the YMCA, 15 minutes on the rowing machine, only on Tuesday and Thursday, then on all the other days I take at least a 15 minute walk with my dog, even in the cold weather. I just bundle up....because I only go to the YMCA twice a week, I don't feel like it's such a chore. I used to love to exercise, and have done everything known to man before getting sick, but with Fibromyalgia, too, it is never easy. I just am glad that I'm not in a wheelchair, but even if you are, you can always use the recumbent bike, or get physical therapy, which helps, too!!

[galatea]

I did the Dr Levine exercise project 2 years ago for a full 4 months with the hope of the cure that was half promised. It required a lot of discipline but it didn’t make me feel any better- the levels of exercise were really exhausting. However, after the four months I gave up and for the following 3-4 weeks I felt almost completely better. After that I went back to my normal state. I worked out that I felt so well when I’d just given up because I had very strong leg muscles to pump up the blood, but without the feeling exhausted with the exercise.

I’ve read and been told that the only thing that improves the prognosis for POTS is exercise, and that patients who have an exercise routine get better sooner. Also my doctor said that medications are only useful in that they can allow you to do more exercise.

I personally find that I feel worse if I don’t exercise every day, but I can’t do more than a half hour walk at the moment.

[E Soskis]

I used to exercise every day - the aerobics queen...when the disease hit hard, I couldn't exercise anymore. I am lucky to walk around the block once or twice a week - I try to walk a little at work when I take a short break. My heart rate does not rise to accommodate any increased demands. In fact, it drops out so, I can't exercise. My internal medicine MD and cardiologist seem unconcerned about whether or not I am able to exercise - so, I don't worry about it!

[volo]

Exercise has helped me feel better, but it has certainly not cured my POTS and whatever the underlying cause is. After exercising regularly for about 4 months - a similar amount to what you are doing - I adding intervals to my exercise routine. That gave me an additional boost so that I felt better more of the time. Previously, I was following the Levine protocol.

I do intervals on a recumbent bike: warm up, then alternate 1 minute high resistance, 1 min low, 10x (total of 20min) then cool down. On the high intensity I go to about 90% of max HR (closer to 100% on the final intervals). I cut back on my exercise if I feel unwell, with dizziness or weakness.

I don't think there is research yet on interval training for POTS, and I would always advise to listen to your body. I speculate that taking my HR up and down in such a controlled way helps me a bit more, beyond what the Levine program was doing.

[davecom]

Thanks for all the of the replies guys. There's a lot of good advice in this thread and some good anecdotes.

Volo - that's very interesting about interval training. I may need to try that. Right now I do 7-8 miles each session on the recumbent bike... so around 30 miles a week. Of those, I do about 21/35 minutes of it on a higher resistance, but I don't constantly switch back and forth from high resistance to low resistance. I get my heart rate up to 160, sometimes 165 bpm - and no matter how hard I try I can't get it above that recumbent biking (of course just standing in place can easily get it to 140s )... Keep me posted on how your interval training progresses.

I used to be an avid tennis player and used to do a lot of elliptical too, maybe one day I'll play tennis again!

[KareBear]

This topic has always confused me. I was in top physical condition when POTS hit hard for me. I exercised everyday almost and did everything from aerobics to circuit weight training to treadmills, cycling, lifting weights....everything. Since I became worse I cant even begin to exercise, I feel terrible. Short of breath, light headed, and end up being sick for days afterwards. I certainly cannot leave the home to even go to a gym, driving is out of the question, I blackout constantly behind the wheel. So if exercising is supposed to help, how can people like me do it? It's one thing my doctor always mentioned (doing exercise) but truly I have tried and it is impossible.

[Xhale1991]

Medicgirl..... I'm the exact same way.

I was into bodybuilding before my diagnosis and was at the gym 6 days a week. Once my POTS came, going to the gym became near impossible. Over the last few months I haven't been able to lift a single weight and exercising only makes my symptoms much worse.

[yogini]

Dave, doctors and patients are still exploring the relationship between exercise and POTS. Most people seem to at leSt agree that moving around (if you can)) can help with POTS. It also takes time and the right kind of meds. Many with POTS have exercise intolerance. Drs want to encourage you to push thru some of the pain, and get on your feet, and get your blood pumping a little. I think something like 30 mins 3-4 times a week would be a huge accomplishment for many.

You may want read posts on the medically suggested protocols, which are considered controversial/aggressive. It sounds like you are exceeding the protocols, and doesn't seem you need to do anything more; you may even feel better if you give your body more recovery time.

[blueskies]

I was never fitter than when my pots symptoms became very obvious. Now my exercise regime is very hit and miss. I have gotten very little exercise this past year because where I'm living means walking has to be my main form of exercise and I'm finding walking any reasonable difference will bring on migraine at high levels. In a week's time I move back to a suburb that is right near the water and I'll be swimming once I've recovered from the move - sigh. I am hoping this will work out.

Swimming, since pots has factored big in my life, has been the best exercise. It's vertical, it's cool, and the water has compression qualities. Once I've built up my swimming over a month or two I start to concentrate on kicking hard -- seeing how high I can kick the water amuses me and also exercises my leg muscles big time which helps, I think. Because I'm allergic to chlorine I can only swim at the beach so it's a bit of a chore to swim according to the tides but I need mid tide or higher for the water to be cool enough and clean enough. (I'm in Sydney, Australia and we have had summer weather for the past month and more and it's not summer officially under dec. Ist.

Once I went for a swim with a migraine and the cool water stopped the migraine. Miraculous. I drink 3/4 of litre of water before I get in the water, sometimes I stop for a drink during my swim and then drink another 3/4 litres of water as soon as I'm finished -- that's when I'm swimming my 1km to 2kms each swim. It takes me about a month and a half, usually, to build up to that distance. Apparently you sweat when you swim only you don't know it so it's important to remember hydration.

I'm so hoping that this summer will be bearable (if I have to I'll set up a tent on the beach to stay cool). Last summer was so hot living away from the coast with no airconditioning. I got sicker and never got back to pre-summer wellness levels even when winter arrived.

blue