Am I Doing Damage When I Do Too Much?

[erikainorlando]

I got my disabiltiy...but I don't want to be disabled!! Soooo as most of you I am still trying to walk a little and swim. Sometimes I get very ill from this...it is such a touch and go with how much to do.

BUT for example tonight I was walking wiht my daughter. I wasn't feeling well but I was pushing myself a little. We looked at my feet and they were purple/red and swollen. Sometimes I shake when I do too much....but am I hurting my body by trying....or when I do too much?

Somedays I can walk around the block the long way but last week I got very dizzy...I got afraid. I don't know if I am making myself sicker... and I thougth exercise was a good thing to try to get the blood back to the heart by strengthening the extremities...............

Any insight is so appreciated!!

Thanks..Erika

[ramakentesh]

Probably not according to doctors such Ben Levine etc who suggest exercise and stamina training to improve the symptoms of POTS. (he did a fairly recent talk on the topic).

But its all still conjectural.

[shoe]

I always wonder this. I guess there is a point that it is possible, but it's also good to push. I just am having a devil of a time finding that point myself.

I am kind of weird in that I don't necessarily have what I'd picture as exercise intolerance. I don't feel great when I exercise, like the doctors said I would, but I don't necessarily feel worse than I would if I spent that 20 or 30 minutes just sitting upright. I think "runner's highs" and endorphins are myths in my case. I'm also finding it so hard to deal with the fact that I can walk/run 3 miles a day if I am having a better day (that's about all I can do that day, but it's something) and on bad days, I can't stand up for the length of time it takes to brush my teeth and rely on the cane way too heavily. So when I feel like I kinda can do something, I try. Maybe too hard.

I think there is value, but if there's nasty, lingering pain it's probably good to back off. It's even harder when the doctors (and family members) say it's good to push it a little, so I do, and I do okay, and then that one extra step was just a little too far and I can't walk or move.

Last summer, before I had any clue that I had some heart stuff going on at all... I'd go down stairs to ride the recumbent bike. My sleep doctor said it'd give me energy. I didn't believe that for one minute, but I wanted to be able to look him square in the eye and say, "Yes, I ride it daily, and no, I feel just as tired." I would fall asleep on it, still pedaling. I thought the pulse sensor was broken, too. I'd go down stairs and it'd be 120 when I just sat on the bike. It'd hit 190 when I was exercising. I felt it, but it had to be wrong. I guess it wasn't... And I have no idea where I'm going with that. Stupid brain.

I think it's pretty safe in the short term to push a little harder, and as long as it's done in increments, it probably does help (or at least, gives a feeling of accomplishment regardless of whether your organs are affected at all). I think, for me, anyway, the hard part is accepting the variability of what I am able to do at any one time and then not getting discouraged and not pushing to my full potential, or (more like me) totally frustrated and mad at the situation, pushing too hard, and making myself at least in the short term feel worse.

It's definitely for me (still... been dealing with this for years, but only now know what it sort of is) a learning curve, and I'm not sure I'm ever going to truly get my head around it.

shoe

[potsgirl]

Hi Erika,

My doctors have always emphasized the need to do moderate exercise to help keep our bodies from becoming deconditioned, and to keep our body parts mobile. I have always been someone who loves a good work-out, so that is usually my goal 4 times a week, even if I just walk the treadmill as long as I can. On the days that I go to the gym, I usually am not up to much of anything else, but it gives me a goal and some social networking. In other words, it gets me OUT of the house. Some days I can't make it, some weeks I can't make it, but my goal is always 4 days a week. If nothing else, it certainly helps my anxiety and makes me feel like my butt is growing huger by the minute - just the hour!

Best,

Jana

[ramakentesh]

Until my relapse last october i was running 1.5 miles three times a week and swiming a mile three times a week - i was fit as a fiddle and this had pretty much diminished most of my serious POts symptoms with only mild dizziness when perched on my chair all day at work.

Fitness was no protection from a relapse of POTS i can tell you.

[janiedelite]

One thing I miss so much is going for long walks. Walking for me relieved stress, got me outside, made me stronger. Unfortunately with my heat intolerance, my body usually gets too warm pretty quickly. I know I WILL feel worse after I push myself, and I'll be more tired, foggy, painful, etc. But I have to live too! I just ordered a cooling vest and I hope it will allow me to do more outside.

As for will it harm us in the long-run, for most of us with POTS it is not a progressive disease. I can't answer for those here who have other types of dysautonomia. My docs suspect I have the more common neuropathic POTS, and I don't think there's really anything I can do that will actually cause more nerve damage (just like I can't do anything to make my nerves heal). I may feel horrible for hours, days, or weeks (depending on how much I pushed myself). I think it's more trial-and-error to figure out what kind of backlash you'll have from the activity. I know going for a walk for more than a block will produce some level of increased symptoms for me, but it feels so good when I can make myself ignore my POTS for a period of time and actually enjoy myself.

However, the longer I'm sick, the more I realize that trying to get more "conditioned" is not going to be my silver bullet!

[ramakentesh]

Yeah that is so right Thankful - although we might get some payback, i dont think we can do permanent damage even though it may feel like you are at times. Just my opinion though, but there is a large school of doctors who believe that the only way to really improve POTs is through graded exercise.

I think I often prescribe more power in the process of POTS to myself than i actually have. Like not doing certain activities the day before something i need to attend in the hope that POTs wont be a problem, but POTs follows its own rules and I really dont have much or any power about when or how it will makes its presence known.

[erikainorlando]

Thanks all!

I know that I feel better when I do nothing...but that is probably only in the short run...so I get afraid to push myself I hate how bad I feel and I get scared of the backlash...

Most of my family says...don't do that or don't do this because they know how sick I get from activity. But I don't think doing nothing is the answer....I just want to make sure I can't make it worse....

[futurehope]

Thanks all!

I know that I feel better when I do nothing...but that is probably only in the short run...so I get afraid to push myself I hate how bad I feel and I get scared of the backlash...

Most of my family says...don't do that or don't do this because they know how sick I get from activity. But I don't think doing nothing is the answer....I just want to make sure I can't make it worse....

My observations:

I feel better (have more energy) when I do nothing with one big caveat. If I have been doing nothing for too long, , like due to illness, then my stamina takes a nosedive.

I have been known to push myself to the point that I feel my brain has stopped. I feel shaky, and I can barely put one foot in front of the other because my body is screaming, "I can't" and I ignored it. I have found that even if I have an episode like that, the next day is a new day and I may be able to handle what I couldn't the day before.

Forget about "runner's high", or "feeling better". I have always wondered why people felt better from exercise and I never did? Now I know. POTS.

The toughest thing to deal with is the inconsistency - good some days, bad some days.

Are we hurting ourselves by pushing? My uneducated guess is, I doubt it, unless I'm injuring some internal organs from lack of circulation? Truthfully, at this point, I don't care. This is my life. I'm trying to live it as best as I can under the circumstances, and if I quit doing things every time I felt poorly, I would be doing nothing---ever.

Anyhow, that's just my opinions.

[chipper]

What a good question!! Exercise has been the end to dizziness for me but also my end of any kind of normal life. This is because I pushed too much in a warm room. I thought that I was cured because I was in the best shape. My resting heart rate was 45, and at that time the inner ear was the dx. Twelve years later in 1990 my dx was dys. Hope someone can answer your question. For me, damage had to have been done. I still struggle with it, exercising twice a week for 5 miniutes makes me sick.

Mary

[firewatcher]

Many of us were "in the best shape of our lives" when our symptoms hit. I think that deconditioning has very little to do with the onset of dysautonomia, but more with the lack of function with it. Pushing too hard if you have vascular EDS as a cause of your dyautonomia could cause permanant damage, but for most of us, it will/could mean a relapse. Intense exercise causes a large release of catecholamines (norepinephrine, epinephrine and dopamine) which can make us worse if we overreact to them. This response is implicated in the stopping of menstrual flow in female athletes, so it messes with the most highly physically trained "normals" there are, not just us dysautonomiacs. THere was a study done on OI patients about conditioning, and it found that it helps TO A POINT, but anything after that point makes it worse!

This is the fine line we walk, don't do too much, or too strongly but just enough to maintain function. That line will widen and narrow from day to day based on symptoms, sleep, hydration status, etc......

I know if I do too much, I suffer for days afterwards and it takes longer to recover from simple things.

[erikainorlando]

Yes..and thanks again. It is so funny...only you all will understand. Why I talk of overdoing it I simply mean walking or kicking lightly in the pool for more than 15-20 minutes at a time. I get upset because I don't even really know when I can do this....sometimes I just can't!! As futurehope said...I can't get my legs to work...get very dizzy...body won't work!! I get so upset when this happens!!! It scares me as well...so I wonder what have I done to myself? (why does this happen??? what is the reason my body starts dysfunctioning??)

PS.

My mother (God love her!!) wanted to buy me a little trampoline to exercise on!! Just the thought of it or anything aeorbic like that sends me to the ER in my mind!!!

[pat57]

I have a feeling, the right exercise for you would be leg resistance while supine.

[futurehope]

I have a feeling, the right exercise for you would be leg resistance while supine.

I do some of that with two 8 lb dumb bells. Over the head, pectorals. You know our ANS doesn't work great supine either, at least mine doesn't. It is not as much stress as being upright, but things are still not working perfectly nontheless.

[maggie]

My doctor and I are working together to help me in this area. I always wear a polar heart monitor while I'm active. First thing in the morning when I get up I put it on. If it's high I know that I will have to keep my exercise to a lower level. Some days as I drink water my heart rate will go down and get steady. Then I am able to up the exercise. He has mapped out a program for me. When I started I wore a podimetor and was able to walk 3000 steps per day, most days. He didn't want me to increase this until I could do it three times a week for a month. Then I could up the steps 500 per day. His motto: is slow and steady. His reason is we do our bodies no good by over taxing it and then having flare ups. In six months I was up to 5000 steps per day with little flare ups. I live in Florida so it's too hot out now to be walking so I bought a recumbent bike and now I ride between 5 to 6 miles a day depending on where my heart rate is. I'm not able to ride every day, but most days I can. I find this is working out well for me between the heart monitor and the other devices it takes most of the guess work out of what I am able to do that day.

Maggie

[erikainorlando]

Futurehope!!

8-lb weights!!! Wow...I am so impressed!! i use 1 and 1/2 lb wieghts..... everyone laughs at me but it is the best I can do... BUT I remember when I couldn't even walk to the bathroom so I'll take it and I am sure you didn't start at that either!!

Thanks everyone!!

[futurehope]

Futurehope!!

8-lb weights!!! Wow...I am so impressed!! i use 1 and 1/2 lb wieghts..... everyone laughs at me but it is the best I can do... BUT I remember when I couldn't even walk to the bathroom so I'll take it and I am sure you didn't start at that either!!

Thanks everyone!!

I had been exercising my entire life. So much for POTS meaning I'm "out of shape". When I had last gone to the gym for workouts, I had been using 5 lbs free weight dumb bells, but higher amounts on the machines. Once POTS hit, I stopped doing anything as I had no idea what was happening to me and I was frightened.

I started up again with 2 lbs weights, then 4, then 5lbs for about 2 years, and now eight lbs. I may stay at this weight for years. It depends on how easy it becomes. I do as much near the floor as possible except for sitting doing arm curls. I do not push myself. I just do a little as often as I can. (I hate to see anything "wiggling", and as I get older I tend to lose muscle mass unless I exercise.)

[pat57]

I have a feeling, the right exercise for you would be leg resistance while supine.

I do some of that with two 8 lb dumb bells. Over the head, pectorals. You know our ANS doesn't work great supine either, at least mine doesn't. It is not as much stress as being upright, but things are still not working perfectly nontheless.

I was thinking you could avoid the blood pooling in your feet while increasing the efectiveness of the "skeletal muscle pump".

[bizbiz]

I have been known to push myself to the point that I feel my brain has stopped. I feel shaky, and I can barely put one foot in front of the other because my body is screaming, "I can't" and I ignored it. I have found that even if I have an episode like that, the next day is a new day and I may be able to handle what I couldn't the day before.

This is my first time quoting, so not sure if I'm doing it right... But a section of futurehope's reply pretty much sumed up how I used to feel.

I got a terrible flu about a month ago, but before that I walking (fast, and with a pram) for an hour a day. I didnt start at an hour, but gradually built up from 20 minutes by pushing myself everyday. Usually by the last 5 minutes I started feeling very out of breath, dizzy etc, but I just pushed myself those extra few mins everyday, and I was able to go a little more each time. Also, it didnt matter how much I done or how hard I had pushed myself, when I woke the next morning I always felt fine. I always felt that the more active I was, the better I felt both physically and mentally (and by mentally I mean brain fog). The less I did, the more I felt like a heavy, weak slug. I guess for me it was a circulation thing.

However, since getting the flu a month ago, things seem to have turned around for me. I feel better doing less, and the longer I am up the worse I feel - I start shaking, feel weak, cant think etc. Just the thought of 'pushing through' the bad feelings is enough to make me want to collapse.

All the POTS specialist that I have seen have all said that exercise helps, especially resistance exercises.

[shoe]

Yeah that is so right Thankful - although we might get some payback, i dont think we can do permanent damage even though it may feel like you are at times. Just my opinion though, but there is a large school of doctors who believe that the only way to really improve POTs is through graded exercise.

I think I often prescribe more power in the process of POTS to myself than i actually have. Like not doing certain activities the day before something i need to attend in the hope that POTs wont be a problem, but POTs follows its own rules and I really dont have much or any power about when or how it will makes its presence known.

I find this as well... I told my doctor I have to take good moments and cram stuff into them, because the ability to do stuff is completely non-transferable. If I only could bottle and save the energy I have at one point to use it when I need/want to do something, but alas... It doesn't seem to work that way.

[futurehope]

BTW, I can do calf muscle exercises (using ankle weights), while holding a dumb bell and using a stair stepper. I've figured out some exercises after reading postings on this forum. You can do exercises on the inner and outer thigh muscles using ankle weights, as well as your butt and the rear and front of your legs.

The weird and difficult thing is, sometimes I'm too exhausted to do anything. Sometimes I can "push through it" and be fine and sometimes I can push through it and feel really bad like my brain stopped.

It's really difficult to tell what you should push through or not. I think I'll use my heart monitor around my chest as a guide and check my heartrates.

This illness stinks. If you don't do anything, you feel bad. If you do anything, you have to watch it or you'll feel bad.

The one thing I learned is one day is not necessarily connected to the next. I've gone to bed so exhausted that I was convinced that I'd sleep though the next day. Then I wake up the next day and find that I'm "okay".

Usually I have some level of POTS headaches. Sometimes I push through it and I'm fine. On occasion, I've pushed it into a full-blown "brain rebellion" migraine. I really have to watch it when I'm pushing to sit or stand in hot humid weather.

Like I've said before, the unpredictability of this is such that I find myself very inconsistent in what I can commit to doing. Who knows how I'll be feeling when I'm supposed to be-------? Fill in the blank. I'm always pushing and doing the best I can. I frequently lay low the day before a "big event" in the hopes that I'm well rested and will be able to handle it better. I guess I'm helping the situation when I do this?! Okay, enough rambling.

[janiedelite]

I find this as well... I told my doctor I have to take good moments and cram stuff into them, because the ability to do stuff is completely non-transferable. If I only could bottle and save the energy I have at one point to use it when I need/want to do something, but alas... It doesn't seem to work that way.

Very well put, Shoe. And welcome to the forum! You word things so well, I totally relate to your statement about cramming things into good moments. They don't come very often, but when they do you'll usually find me doing yardwork or organizing. I count that as my exercise on those days!

[erikainorlando]

You are all soo right!! I don't know when I can push thru and when I can't. I think the big one for me is not to be afraid to try. Sometimes I am soo sick afterwards that I am afraid .....I try to connect the dots and don't want to do whatever has made me sooo sick.

For me, if i have been even up (not reclining) for more than a few hours....I begin to feel ill. Never seen anyhing like it...never heard anything like it....but go figure...it sounds like I am not alone here.