If Exercise Has Helped You

[andybonse]

Hello,

If exercise has helped you, can you please answer;

1) how much, how often, what type

2) What symptoms has it helped and by how much?

3) How long did it take to notice a difference

I have started up again doing 30 mins every day to every other day depending how I am feeling, I get my HR up to 140-150 and maintain and then for a few seconds i'll push it up to 180 and down etc.

I noticed I am feeling a little better with my shortness of breath so far, hoping it is the exercise as I continue it may improve etc.

I noticed I do sweat from my head which is cool haha.

[Macca]

Hi Andy

Exercise has been a huge help to me. I had to start at a really low base, walking for a few minutes a day. At that stage I didn't know I had POTS (had a CFS diagnosis) otherwise I would have gone with recumbent bike. I built up very slowly but surely over 3 years and now do two days of exercise in a row and rest on the third. The exercise I have worked up to is 40 minutes on the upright bike and swim 1.2km on the second day. I also try and do a walk or two for around 15-20 minutes every day. Exercise has given me a substantial decrease in most symptoms including hypotension, fatigue, dizziness and shortness of breath. I feel worse when I don't exercise and also found it really helpful in reducing the length of a flare. The key though was not to overdo it and only increase exercise carefully. I also found cardio much better than strength exercise.

[lewis]

It took me a couple weeks along with taking propranolol. I Have been slacking off and can tell I need some when I start getting missed beats and have breathing problems. I will excersize and then get recharged

[Goschi]

Hi Macca,

that sounds quite impressive, Congratulations for being so persisting!!

May I ask, how you can handle the "rest" of every day life, despite your disciplined exercise?

Best wishes for further improvements!!

[andybonse]

I'm on week 2 of exercise now and can notice improvements which is good.

Hoping after 6 months a big difference, we will see!

I also want to buy some dumbells and a bench to build muscle overall.

[Goschi]

Wow, Andy, that sounds great!! Congrats!!

Just referring to your first question - what exactely do you feel improving?

Good luck for more progress!!

[jknh9]

I have seen a lot of improvement with exercise, but it's been a long, slow process. I was diagnosed in 2011 and started with walks through the neighborhood at a slow pace, 30-90 minutes at a time (at first it was much less). I often feel better when I'm walking rather than sitting or standing still, so even at my worst I was able to walk a bit. The tachycardia was terrible at first and continues to be a problem. These days, I do typically 30-45 minutes, sometimes 1-1.5 hours, of exercise. I vary it a lot to make sure I hit every major muscle group. Yoga is most difficult for me and I often feel symptomatic afterwards and into the next day. I often do cardio and strength training DVDs, and have worked up to some pretty difficult ones (Bob Harper's Inside Out Method series). I also go for a jog-walk (alternating as heart rate dictates) of 3-5 miles at least a couple of times a week. I also do flat-water kayaking, which is nice because I can take a break when I need to. My heart rate still gets up around 190 pretty easily, and when I'm doing cardio or jogging it tends to hover in the 150s-160s. When I get near 180 I take a break or stop.

My symptoms and progress seem to have plateaued, although my muscles are definitely stronger and I'm in good shape now. Sometimes I still feel worse after exercise or even the day after I do something like power yoga, but I think it's beneficial overall. Plus, it's encouraging to see what my body is capable of in spite of the POTS, NCS, and irregular heartbeat

[Macca]

Hi Macca,

that sounds quite impressive, Congratulations for being so persisting!!

May I ask, how you can handle the "rest" of every day life, despite your disciplined exercise?

Best wishes for further improvements!!

Hi Goschi

I've found that has my exercise tolerance improved, my overall symptoms have reduced substantially, so my overall ability to function has gotten better slowly but surely. It's been a lot of hard work - as my POTS doc told me yesterday: "you're grinding out a recovery".