Tough To Face - Exercise Debilitates Me

[futurehope]

I couldn't do my "normal" weight lifting, stomach exercises for weeks because of various things. I felt fine. I went back to doing my weight lifting and exercises, and felt exhausted, debilitated and useless. I needed much sleep.

Conclusion: Whatever it is (POTS, CFS, whatever combo thereof), has limited the amount of exercising I can do.

As a matter of fact, if I live my normal life and do limited walking/standing, I'm fine. Other than that, I'm useless. Interesting.

It's kind of difficult to keep the weight off the stomach, and remain fit if I cannot exercise. Guess I'll have to go back to square one and do 5 minutes for a week, 6 minutes for a week, etc.?

[lieze]

I'm just thankful for anything I can do at this point.

I know it's depressing but I don't know which is worse, having your head go bonkers just because you've put food in your system or having to sit down because you're trying to do too much.

I think I'd be happy to get past all the normal things for now like the palps, dizziness, difficulty breathing, and the visual stuff trouble focusing and migraines.

Then take on the task of worrying about whether I can work out or not.

At this point I would just be happy to be able to function everyday just at a base level.

Anything above and beyond that would be a blessing.

lieze

[mvdula]

I couldn't do my "normal" weight lifting, stomach exercises for weeks because of various things. I felt fine. I went back to doing my weight lifting and exercises, and felt exhausted, debilitated and useless. I needed much sleep.

Conclusion: Whatever it is (POTS, CFS, whatever combo thereof), has limited the amount of exercising I can do.

As a matter of fact, if I live my normal life and do limited walking/standing, I'm fine. Other than that, I'm useless. Interesting.

It's kind of difficult to keep the weight off the stomach, and remain fit if I cannot exercise. Guess I'll have to go back to square one and do 5 minutes for a week, 6 minutes for a week, etc.?

I have the same thing since POTS. Can walk, stand, do cooking, etc for the most part. But anything strenuous, esp for more than a minute or so (ie I plunged the tub drain a couple days ago bc it was slow-draining - esp bad bc upper-body strain sets off POTS way worse than lower body exercise).....I did it quite a few times - but was kinda pacing myself - at some point, I realized I needed to stop so I didn't totally cross the line into a big POTS attack. My chest felt a bit funny for a while after that, but went away relatively quickly. If I were ever to attempt some full workout.....I would NEVER make it through and would end up in one of my episodes......weak, awful, fatigued, no appetite, possible chest discomfort, feel like I am dying....for a couple hours at least. I hate that I can't do the things I want to do.....but trying to learn to live with it....

[Simmy]

With my form of POTS, orthostatic hypotension with blood pooling in lower extremities, I find that I am able to walk on a treadmill at about 2 or 3 mph for up to 10 minutes at a time and my heart rate goes up to only about 120bpm or so, as long as I keep moving. The moment I stop and stand in place it shoots up to 150bpm or more so after a walk I head straight to the couch to rest and avoid standing as much as possible. I try to exercise two or three times a day.

[Brye]

My HR doesn't go up past 120 either. I can walk at almost 4MPH (long legs) and my HR still doesn't climb much. Stairs really do me in. That's when the tachy moments really kick in. I get short of breath and light headed. Hope you are able to find the right exercises that work for you. My favorite is the recumbant bike. I can play my hand held yahtzee game and get a work out in. Hard to fall to when you're sitting. It's frustrating for me as well being so out of shape. I weigh more now than I did even when I was pregnant. Not giving up though!! I'm hoping if I lose some weight that'll help some of my symptoms as well. I figure it can't hurt.

Brye

[erik]

I did an extended intentional deconditioning period at one point. Figured it was necessary to give a "good faith" investigation into whether my bradycardia is from being "in such good shape" (simultaneous with my POTS/tachycardia being from severe deconditioning, of course . Needless to say, it set me back tremendously. My resting HR might have gone up a few beats but not much. For me, even minimal maintenance exercise amid bad periods and even things that backfire badly seem to be a plus in the big picture... but it's a tough call. I "self-prescribed" this deconditioning, so no blame on a doc or anything. Was just part of learning about my body the hard way. It was maybe a year ago, and I don't think I've regained stamina I had back then yet (but other factors are always in play too).

I've been perplexed by the "medical stereotype" of POTS/dysautonomia being "thin women". I can see how digestive troubles could promote that, perhaps norepinephrine surges helping burn stuff off... but for those of us with extensive fatigue and difficulty losing weight (from inactivity and/or lower level issues) it seems surprising. I can definitely see how going too thin can be fatiguing & debilitating too, perhaps more than being hefty:

Maybe Fat-POTS and Skinny-POTS (F-POTS vs. S-POTS) would be a more useful schism than H-POTS and PD-POTS??? Might trace to some specific ANS influenced metabolic distinctions that are as meaningful as a nanogram/milliliter of norepi! Who knows, maybe the beta-adrenergic receptors that release fat energy get desensitized from chronic stimulation in select folks??? NIH, may I have a couple mil to study this please?

[shadesofgrey49]

Interesting theory...If only doctors cared enough to put that much thought into it...

[firewatcher]

I have worked myself up to one hour of guaranteed exercise a week (Pilates) because I pay for it (literally $$$$ and figuratively!) I can't say that it is helping with anything other than my clothes fitting better. I feel like a train wreck for the rest of that day and it takes 3-4 days to recover after. However, on that one day, I am as strong as I used to be, often outperforming "normal," fit partners who have done Pilates multiple times a week for many years. If I attempt to do anything else that week I am almost incapacitated. Once I recover, I occasionally try to walk a mile to bring up my cardio and total exercise time for the week. I'll get 10-15 minutes into it and my feet will go numb, by the end of 20 minutes my hands are numb as well. I have a hard time with house/yard work. Like walking, I can get 20 minutes and then I am too symptomatic to continue. It is so frustrating! There are several exercise/POTS studies actively recruiting at Vanderbilt, so maybe some new treatments will come out of them in the next few years.

BTW- I'm not the tall, skinny type either. I tend to be the medium, stocky type. It would be easy for me to gain weight if I didn't watch my diet closely.

Edited April 25, 2010 by firewatcher

[Noreen]

Once I recover, I occasionally try to walk a mile to bring up my cardio and total exercise time for the week. I'll get 10-15 minutes into it and my feet will go numb, by the end of 20 minutes my hands are numb as well. I have a hard time with house/yard work. Like walking, I can get 20 minutes and then I am too symptomatic to continue. It is so frustrating!

BTW- I'm not the tall, skinny type either. I tend to be the medium, stocky type. It would be easy for me to gain weight if I didn't watch my diet closely.

Do you think you might be underestimating the amount of exercise you get in small increments throughout the day with the kids? (Mom, do you know where my xyz is, where is the qrt, etc, - miraculously these things only appear if you actually go there and find them). Unless you are flaring big time, I know you will continue to go to kids' rooms to help them locate the missing homework, to go to the kitchen to find the invisible ketchup bottle on the refrigerator shelf, etc. While all this is small, have you ever worn a pedometer to find out how much you really do?

I had just been trying to search for a poll on weight - I, too, fall into the medium stocky better watch your diet model.

[skyblu]

I have worked myself up to one hour of guaranteed exercise a week (Pilates) because I pay for it (literally $$$$ and figuratively!) I can't say that it is helping with anything other than my clothes fitting better. I feel like a train wreck for the rest of that day and it takes 3-4 days to recover after. However, on that one day, I am as strong as I used to be, often outperforming "normal," fit partners who have done Pilates multiple times a week for many years. If I attempt to do anything else that week I am almost incapacitated. Once I recover, I occasionally try to walk a mile to bring up my cardio and total exercise time for the week. I'll get 10-15 minutes into it and my feet will go numb, by the end of 20 minutes my hands are numb as well. I have a hard time with house/yard work. Like walking, I can get 20 minutes and then I am too symptomatic to continue. It is so frustrating! There are several exercise/POTS studies actively recruiting at Vanderbilt, so maybe some new treatments will come out of them in the next few years.

BTW- I'm not the tall, skinny type either. I tend to be the medium, stocky type. It would be easy for me to gain weight if I didn't watch my diet closely.

Interesting.... but I don't need a watch when I take a walk..my body always seems to know when I've walked for 20 minutes. For some reason I'm fine until around 18 minutes then the fatigue hits me hard. I've never been able to get an answer as to why I have such bad exercise intolerance. Before was sick I used to walk for hours and bike ride for miles. I'm thin but have very little muscle tone.

[ramakentesh]

There is limited research that demonstrates that exercise improves POTS greatly. Ive been exercising for 9 months now and I have improved but I always tend to anyway and I cant really tell whether its connected. There are some forms of POTS - where its unlikely that exercise would benefit.

[ramakentesh]

The POTS encountered by Fibro seems to be connected with excessive neuropeptide Y - which tends to make people eat more and put weight on quicker as well as increasing the effects of norepinephrine. If it has a hand in POTS without fibro then these would probably be fat hyper eating POTSies.

Those with leaky veins in their thorax and stomach (one form of low flow POTS) then your stomach and abnominal area may get fatter after long standing/sitting.

[DizzyMe]

Those with leaky veins in their thorax and stomach (one form of low flow POTS) then your stomach and abnominal area may get fatter after long standing/sitting.

Interesting...I have EDS/POTS and my abdominal area is quite flat in the morning but I start to look pregnant as the day goes on especially if I am on my feet a lot.Do you know what is leaking out and what kind of treatments are beneficial as I am seeing my specialist tomorrow and would love to discuss it.

Many Thanks.

Melanie

[TXPOTS]

The topic of exercise really interests me, and I can't wait to see the final results of Dr. Levine's study. I think this is nutty, but I can jog 5 miles/ day and ride my recumbent for an hour/ day. I have no problem with exercise tolerance. In fact, the exercise appears to pump the blood back up my brain, and I feel better when jogging than walking, sitting, or standing. However, when I try to sit or stand without my head supported, the horrid POTS symptoms start relatively quickly. I had to build up to this after being bedridden for almost a year. I still can not engage in activities such as shopping, getting my hair cut, driving, taking my kids to the park, or anything that involves quietly sitting or standing. I understand the deconditioning argument, but when I got my first life altering symptoms of POTS, I was in great physical shape. ??? Cardio does not bother me, but any kind of weight lifting or abdominal crunches send me into a flare. Anyone else like this?

[hensor]

Interesting...I have EDS/POTS and my abdominal area is quite flat in the morning but I start to look pregnant as the day goes on especially if I am on my feet a lot.Do you know what is leaking out and what kind of treatments are beneficial as I am seeing my specialist tomorrow and would love to discuss it.

I'm from the UK and have EDS & POTS too. - diagnosed at UCH and NHNN.

I don't have anything 'official' that might help you, but I do wear compression tops (like top athletes wear), initially for my EDS joint instability&proprioception, but I found that they also help me feel more 'alive' with regards to PoTS. And wearing a very snug wetsuit makes a MASSIVE difference to my fatigue levels and ability to do things in an upright position etc. Infact, I have been known to cycle on my exercise bike wearing a wetsuit simply because then I can! Perhaps it would be worth discussing compression wear - not just stockings - with your specialist?