Exercise - How Much Can You Tolerate?

[potsgirl]

Please take a few seconds to fill out this poll on your activity level. I think it would be informative to see how much exercise we get, even with a lot of us suffering from exercise intolerance.

Thanks!

potsgirl

[mkoven]

I've built up from mild floor exercises to pretty intense aerobic most days. Now I really miss it if I can't get it in. It seems to help with so many of my symptoms. I work out 30-35 minutes on the treadmill and then do various strengthening exercises for my hypermobile joints. At first I could go .6 mph. Now I work up to 4mph with incline. some days are harder than others, and if I feel bad, I slow down to get things to stabilize, before trying to ramp up again. And then I DRINK about 32 ozs of something with electrolytes. As I've said in the past, if I'm struggling, joint wise or ans wise, it helps to increase incline rather than speed.

[potsgirl]

mkoven,

Thanks a lot for your input. I find this subject very interesting, and how encouraging that you've been able to increase your exercise. I try to go 4 times a week, 30 -40 minutes cardio, and strength train legs and abs (this helps to stop blood from pooling, I've heard) 2 -3 times a week. Keep up the good work!

My best,

potsgirl

[firewatcher]

I would add another question to the poll:

What is your result after exercise?

--absolute exhaustion

--very tired

--tired, but in a normal way

--invigorated

--POTS flare big-time!

I have slowly worked my way up to Pilates 2 times a week and an attempt to walk 2 times a week, but I suffer for the rest of that day. I feel better and can handle more as I work up to it, but it is SSSSSSSsssssssssslllllllllllooooooooooooowwwwwwwwwwww. My progress is hit and miss, some days are good and some days I just can't do it at all.

[mkoven]

timing is key for me. i have more energy in the morning so try to exercise then. and i only increase duration in tiny increments--like one-two minutes per week.

[Fallon2120]

I started with water aerobics a few months ago b/c my EP said that would be a good way to start and now I work out about 3-4 days a week. I do the eliptical for 30 min and then the bike for 30 and do some weights with my arms. I just bought a polar hr mon and that helps. I am exhausted when I get done, but I do feel a difference when I don't go.

[jump]

This was so hard for me to answer, because it varies so much!!!!!

I would say that most weeks I am able to do SOMETHING active most days (never every day, though). Sometimes that's a slow, short walk. Sometimes it's 30 minutes of moderate aerobics. I can never do really heavy things, like running or fast aerobics or anything, but on really good days I can do things that healthy people would consider exercise.

The thing is, I was an athlete before I got POTS, and I've been working up to being able to exercise this much for about three years. At first I could barely go for a fifteen minute slow walk on a GOOD day. Now, when I exercise, my heart ALWAYS beats really fast and hard -- it's hard for me to keep it at 60%-80% of my maximum heart rate, which is what is recommended. I do make sure I keep it below my maximum heart rate for my age (192). All exercise gets my heart rate up to about 120-140 at least, and usually anything moderate (brisk walk, etc) puts me over 140 very quickly. I can have my heart rate up to about 175 before I start to feel really uncomfortable. I used to feel really uncomfortable if it went over 125 or so. So I'm not sure my increased exercise tolerance, over the past three years, is necessarily about being less symptomatic, so much as being able to TOLERATE those symptoms better. Most healthy people don't reach 80% of their maximum heart rate taking a moderate walk, but I pretty much always do.

And, as firewatcher pointed out, it takes a lot out of me. I would say most days after I exercise I feel like I need a nap, and I feel tired not in a good way. Sometimes it leaves me utterly exhausted. If I push myself too much -- if, say, I go for a too-strenuous up-hill hike -- I can be out for days. I keep it up because I do think exercising has helped me marginally; last year at this time, standing still for a minute or two AUTOMATICALLY made my heart rate go up to 130-140, no matter what. Now my standing hr is often 110, or 120 on a "bad day." I can only assume this change is from trying to get my heart in the best shape it can realistically be in. So, the exhaustion from exercise is worth it to me because I think it might make me feel a little better over-all.

I definitely have some days/weeks when I can't do anything at all, not even walk to the mailbox for mail. But then I have some days where my exercise seems decidedly moderate.

[mkoven]

It's hard for to take about cause and effect, but Cleveland Clinic prescribed cardiac rehab as part ot the treatment for me. Last summer I could barely walk a block without chest pain. Since then, I've added florinef and rehab--so can't say what's what. I should also say that I always wear my stockings, even though they're hot. I also wear a hr monitor during exercise. I used to monitor bp, but I don't now, in part because I don't want to drag the machine to the gym, and because I can feel when it's off--i.e. dropping instead of rising, and then it's time to slow down, or squeeze my muscles rally hard to help kick it in...I am pleased that I can now exercise hard enough that I'm pretty sweaty. Exercise helps so many of my other ills, including joint pain and headaches. If I'm at the very beginning of a migraine, sometimes a good workout will clear it. And it generally lifts my spirits and makes me feel like I can deal with everything else more effectively.

[potsgirl]

Thanks for the input!

mkoven, firewatcher, fallon holt, and jump: My neurologist at the Mayo Clinic also prescribed exercise for me, so I try to make it as many days during the week as I can. Some days I can definitely do more than others, but I think the exercise is more beneficial than not. I believe in the long run it helps more than it hurts. I also used to be an athlete, so it's frustrating that I can't perform at my old 'level', but at least I can still do something. My pulse gets high pretty quickly, and I am pretty tired otherwords, too.

Firewatcher - This is my first poll, and it looked like we could only do 3 questions? You're right, your question would be a valuable addition. Do you know how to add a fourth question?

Thanks & peace,

potsgirl

[all4family]

Hi,

If you do figure out how to add more questions I would also add how long does it take you to recover to be able to perform normal activities.

Suzy

[Guest brianala]

I can do moderate to heavy exercise, I just can't sustain it for many days a week because I wind up feeling like crap afterwards and need time to recover. I'm in fairly good "shape" in the sense that my muscles are pretty strong and my body will allow me to do anything I try. I can do the exercise, I just don't get any energy or feel refreshed afterward so I tend to avoid it.

[firewatcher]

Thanks for the input!

mkoven, firewatcher, fallon holt, and jump: My neurologist at the Mayo Clinic also prescribed exercise for me, so I try to make it as many days during the week as I can. Some days I can definitely do more than others, but I think the exercise is more beneficial than not. I believe in the long run it helps more than it hurts. I also used to be an athlete, so it's frustrating that I can't perform at my old 'level', but at least I can still do something. My pulse gets high pretty quickly, and I am pretty tired otherwords, too.

Firewatcher - This is my first poll, and it looked like we could only do 3 questions? You're right, your question would be a valuable addition. Do you know how to add a fourth question?

Thanks & peace,

potsgirl

I am a techno-idiot, so this is just a guess. I think you would add it as an answer under one of the multiple choice answers inside one of the questions. Just enable the part that allows for more than one answer. I've only done one poll, so I am not sure.

[Rachel]

potsgirl,

You are right about only being able to do three questions per poll. You can add up to 20 options per question, but only three questions per poll.

If someone is wanting to know about symptoms after exercise that can easily be discussed in a separate topic or poll.

Rachel

[volo]

My experience is similar to mkovens, although I don't have hypermobile joints (although I do have joint pain). I went from exercising in bed only to floor exercises to recumbent bike to upright bike and now on treadmill at 4mph with incline. This progression took 4 months for me. I now typically do 30 minutes at moderately to high intensity (about 75% of my MHR, sweating, can talk but with some difficulty) plus another 10-20 minutes on a warm up and cool down. I've started adding intervals to that, where I go to 85-90% of my MHR. I do this cardio 3 or 4 times a week.

I also do weight training 2 or 3 times a week and that takes me about 45 minutes because I have to rest 60-120 sec between sets. I started just with lower body and abs, but now do full body, to have a more balanced body as my leg strength increased quite a bit.

When I first started MHR meant nothing, as just sitting on the recumbent bike could get my HR up to 75% or more of my MHR, but now my HR is much more controlled. I'm also on midodrine and BB.

Everyone is different and I am grateful I have been able to build up exercising this way and it helps a lot. But I did build up slowly and cut back whenever I had aftereffects later that day or the next day. Typically the negative effects of overdoing it are somewhat delayed for me and felt the next day. I have never tried to push through any negative effects of exertion.

[YolaInBlue]

I've built up exercise to 2 miles walking and 4 miles on recumbent bike on most days. On bad days I reduce or skip walking. I do light free weights and ab exercises twice a week. I used to work as a fitness instructor and did aerial silks before dysautonomia. I used to feel great after exercise. It's frustrating that I can do so little now and I feel so bad after my walks. My blood pressure drops, I always have to lie down. I was bedridden for over 3 months: from September until about Christmas of last year.

[margiebee]

It is so inspiring to hear that other people on here have been able to work up to a higher tolerance! I have been starting to exercise, which was a real push for me because it was a nightmare for my body at first and I used to avoid it because it would make me feel so ill. But now I am loving it. My current routine is I do a light jog for 5 minutes, recumbent bike for 15-20 minutes and 15-20 minutes of strength training, focusing on my legs to try to help with venous pooling that I have severely. I also do some light workouts from youtube videos, and it is awesome to see when I started out only being able to do 3 minutes of it and now I can do the whole thing.

The only exercise I used to be able to tolerate was yoga (the slow non-heated kind, no cardio so of course I love it haha). I still am practicing yoga and would recommend it to anyone else with POTS, the instructors at the studio I go to understand my condition and help me find poses to help me and modify others so I don't pass out.

[westernmass]

It's taken me about 10 months to build up to what I do now, which is 3-6 days per week exercising consisting of 30-45 minutes upright cardio and 20-40 minutes of strength and stretching exercises.

In the beginning I was doing 10 min/day recumbent bike which was exhausting. The key for me was really slowly increasing the time so that eventually I got up to 45 min recumbent, then really slowly phasing in upright cardio. My heart rate is usually 150-170s while doing cardio. I have to be careful to not overdo it, even when I feel good- which is so tempting now that I'm getting stronger and see "normal" people working out-- but I know overdoing it will cause a setback. I have to be diligent about sticking to my plan.

[Relax86]

I posted what my general tolerance is...sometimes I can do more and sometimes I do less. In the beginning of a flare I usually take off from exercise completely (usually a few days). But I know that staying somewhat fit and moving is key to maintenance and quicker recoveries b/t flares for me.

[BadBadBear]

While I exercise daily (walking a couple of miles), the amount I can do varies so much, and how I feel afterwards varies, too. This weekend I had a couple of really great days, yesterday was OK, and today I'm crashed. I wish I knew if it was from exertion or ????

I am also in good physical condition, just wish I could do much more than I can. Most of my energy for exercise is directed to walking the dogs and working in the garden. I can piddle around in the garden for an hour or so at a time most days, I am not sure if it's exercise or just 'activity', though. It FEELS like exercise.

- Michelle

ps. As with MargieBee, I also do a restorative yoga class once a week & do home practice.

[jangle]

I don't experience post exertional fatigue, so I'm different than most other POTS patients. In fact, I generally feel considerably better after exercising.

I went a little crazy with exercise, I was up to a maximum of about 7 miles of jogging, and I would jog fairly regularly (4-5 days a week). I would also add in stairmaster + weight lifting + rows.

At some points my HR would hit over 210. Not recommended unless you're cleared by a physician.

Lately I've calmed down a lot on exercise, but I still do about 2 miles of jogging daily, plus the assortment of weight lifting.

[Mydoggielovesme2]

I started exercising again after going to Mayo. Dr Goodman convinced me to really push through the rough stuff, and not give up. I had been going to PT for 2 months prior to mayo-twice a week. He said that was not enough. He felt exercise had to be a daily thing. So we got a recumbent bike for home. The results have been encouraging. I am no longer passing out after 5-10 min. I have worked up to 3-5 miles, and 15-20 minutes daily, and am able to do a resistance level 3. It may not seem like much, but for me it's a huge improvement. I have a long way to go, but am hopeful.

[E Soskis]

I was an aerobic queen back in my 30's and early 40's - an hour every day - even taught a little - now, nothing - some days can walk a little - try to walk about 5-10 minutes every day just to keep moving some - can't bend over without nearly passing out - can't do more than a little stroll otherwise, will be stretched out in a neighbor's yard - climbing stairs is OK for one flight, after that, nothing doing - MD says not to worry about exercise and just do what I can - still bothers me that I have less strength and endurance than my 88 year old mother!

[Psalm 23]

It still amazes me the way this condition can cause one to go from being such an exercise enthusiast to one who struggles with such seemingly easy activities. A year and a half ago I had reached a point of such confusion about what I should be doing to improve my condition in terms of exercise I just stopped doing anything. The years prior I had been on and off sick which made getting back to any kind of regular exercise program oh so difficult and the path of least resistance was to just stop, which was what I did until I sought out help from Mayo. The exercise recommendation made by the Neurologist there was to initiate a regular exercise program which should be daily, and include something such as walking for 10 to 15 minutes or use of a recumbent bike for a similar length of time to start. Goal level of activity was to be 30 to 45 minutes daily. Exercises to strengthen lower limb and abdominal muscles also needed to be incorporated into the plan. At this point in time I am able to manage a slow, flat surface walk, mostly daily. I can go for about 30 minutes. When I try to push for 45 minutes I spend too much time afterwards trying to recover. Mornings are my best walking time. I try to do the lower limb and abdominal exercises later in the day. I wish I could say I feel much better for it but I don't. I'm just following orders. It's such an immense frustration for a once athletic type. I'm trying to be optimistic that more improvement will be realized over time.

Janet

[KevInChester1]

I walk large distances most days - most I've done in a day was 20 miles (32km). Low intensity is fine I can go on and on, high intensity my blood pressure rises with my pulse rate until it all gets too much and then it just plummets.

[Freaked]

This is really inspiring for me to hear. I've had suspected pots for three months now and don't have an appointment with someone who might diagnose me until the end of July. You're so lucky in America you have places like the mayo and Cleveland. I can't even walk up stairs upright atm. I was starting to do some light exercise but then I started getting more chest pains and skipped beats, which scared me. My cardiologist has abandoned me because my tests were normal (though he didn't order a stress test because I'd had one as a teenager). I'm very scared to start exercising with no guidance, so for the moment I'm a cripple.