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For those of you who have been able to exercise, but had symptoms of "exercise intolerance," what were your symptoms and when did they happen?

I have NEVER been able to run, ever. I got extremely tachycardic and short of breath and then black spots and sparkles started popping in front of my eyes. Even when I was in "fantastic" shape (marital arts/body building) I could never run. When I did cardio, my heart rate never got lower--never became "conditioned." My HR was 160-180 walking at the beginning of working out and still the same 6 months later, only the time got longer, I could never get faster.

Now...I have extreme muscle weakness, shakiness, tachycardia, grey-outs, weird sweating patterns, cold extremities that swell and difficulty breathing (sometimes just walking up the stairs!) Then, once I stop and for 30 minutes later, my BP drops to readings like 87/80.

Are these the typical problems with POTS and exercise?

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Even when I was 20 the doctors called it "tachycardia on mild exertion" ... that was pretty much all they could think of back then. But they never figured out that "mild exertion" meant standing UP! When I was a teenager I could jog. Heck I walked two miles to school ... in the snow ... up hill ... both WAYS! (Old Bill Cosby joke.) But fact is I COULD walk back then. I took a couple of Dance classes even in College. I noticed my heart went WAY fast, but I could still DO everything. Since my first crash in my early twenties all that went away. I have never been able to get back to being able to do any kind of aerobic exercise. I am pretty good at floor exercises though. I can leg lift, lying down with the best of them! And I can do ab crunches. I use to lift weights, but haven't in a long time now.

At this point, even walking around gets me quite symptomatic. This morning I needed to walk downstairs twice (something I can usually do by mid day without a major crash) but by the time I got back up stairs the second time, my system went into adrenaline overload. Lots of heart skipping, as I sat down because the blood pumping was just going so fast during standing that it couldn't adjust quickly enough to the seated posture. It really gets annoying not to be able to DO simple things like that.

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When i was younger I could run and pretty much do everything most kids could do. The only thing I can remember was that when i got sick Id always feel slightly dizzy for a few days afterwards. Id say that things didnt start getting strange for me health wise until i was in college. For about two months at college my eyes filled up with floaters over night and I felt dizzy all the time. The doctors at the time didnt know what it was and when it went away I assumed it was nothing serious.

After I finished college I was starting to gain some weight so I began running a fair bit. I did notice my heart beat seemed more rapid than usual, but I assumed this was because I had become unfit. Running generally made me feel good afterwards although a little puffed.

Then I started to get dizzy after I ran a little - still i didnt really think much of it. And it was VERY mild compared to what I deal with nowdays.

In 2003 at the age of 26 I got a pretty nasty cold juts after I got back from a overseas holiday and before Id really recovered properly I started training pretty hard again. I remember distinctly the night in question - I ran for a while but my heart rate went completely over the top. I had to stop and was wondering what was going on. It was hard to settle it down.

Then as I walked home I suddenly felt VERY dizzy and completely out of it. I got home and lay down on the bed. After half an hour my heart rate went so insane lying down that i was rushed to ER. Never truly recovered from that day onwards. Now days I have fairly long 'remission' periods where I am only symptomatic on the odd day but generally still feel a level of fatigue that I never used to, and then I get boutes of nasty symptoms that seem to last around 3-4 months or so.

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I have periods when my bp does not respond to exercise, and goes down instead of up. and then I feel awful-- chest pain, starts, can't breathe. i can walk now, on most days, with an appropriate bp response-- wasn't true till recently. but I can't bike without seeing starts. Florinef and midodrine help. If I overdo evercise, I feel pretty bad after, bp-wise. If I am moderate, I usually feel better. If I start feeling like I might crash, sometimes a walk will wake up my ans. My bp dropiing during exercise led to an excruciating cardiac workup this summer, complete with angiogram. We're pretty sure now that it's all dysautonomia.

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hi..

i cant really exersise anymore... But i try to move as much as I can.. When i was abel to exersise running was a problem for me, more then other stuff.. i could run a bitt one day, but not the other.. i tryed very hard to better my running ability, but was most of the times out of breath.. Strengt was more stabil..

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I can relate to most of the responses. If I'm in a bad patch, my complaint would be feeling instantly tired on exercising - feeling absolutely exhausted like I had been exercising for ages when I had only done 20 seconds; immediate tachycardia. I now know not to bother if I'm like this, it just makes matters worse.

Then there is the "I've overdone it" feeling that sometimes happens a bit after the exercise, or even the next day, when I struggle to stand up and get very tachy. There is a learning curve with this and I have minimised this reaction as far as possible.

And finally the greying out/loss of vision during exercise when it's all just too much. Thankfully this doesn't happen to me too often, but is a reason why I prefer exercising somewhere safe indoors.

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I have exercise intolerance too. I have never been able to run much, even as a little kid I was always the slowest runner for kick ball and had to rest during the games or activities frequently, however I didn't feel sick or have the symptoms I have now, I just tired easily. I have been able to run for years, I'm only able to do very paced walking and only for a few minutes at a time before getting lighthead/weak. I'm not sure what my hr/bp does always, but sometimes it get very narrow pulse pressure from activity which makes me feel so weak I can't even talk or open my eyes, etc. My daughter who is 3 has much more energy than I've ever had and it's fun to watch her and know what it would be like to be well :angry:

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Just walking for a while can make my symptoms worse and then im completely exhausted. However about 6 years ago, ( before I got sick ) I was very athletic. Before I got sick in high school I was involved in Cheerleading, Basketball, Volleyball, Softball and Track. And I did well in all of them. Particularly track. I could run very fast but nothing longer than a 200 meter. Now im lucky if I can walk to the mailbox and back without having tachy and having to lie down.

Candace

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I have always had tachycardia, even without exercise-----(in the past they just said I had a very fast heart rate, and said it was nothing to be worried about). It was difficult to run, and now I know why. However, I was always active until I crashed hard in late 2000. I walked several miles, played frisbee, and danced a lot.

Now if I walk too far it feels like a switch just goes off, and my body locks up. I get near syncope, dizzy, lose my balance ect. I get really rigid, and the only relief is to lay down and put my legs up in the air.

I'm going to go back into aquatic therapy, as I seem to do Ok with that. I'm a good swimmer, but when I get out of the pool, I have to go slow. I had one incident that was pretty bad when I got out of the pool to soon, it felt like my heart rate dropped really quickly, and then it fluttered. When I got down on the ground it went away. For me it seems to be gravity, blood pooling---------lack of blood flow to my head. Once my heart starts to feel it, I know I'm in trouble.

Every day I have some slurring because sitting up too long affects te blood flow to my brain. I'm just one of those people that keeps moving though-----even on bad days I try to move. I think this is what keeps me from getting even sicker.

Maxine :0)

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Guest tearose

When I speak of my "exercise intolerance" I mean that I can and do exercise within good limits and then AFTERWARDS I suffer.

I may be able to manage 20-30 minutes of exercise for three times a week for a few weeks and then, maybe because I did something else active in my day, or I slept poorly, or who knows why, I will suddenly start getting very wide fluctuations in bp and heartrate and feel disabling fatigue. I will notice shortness of breath, more pooling and overall decline fast!

I was trying to explain this to someone just today. Here is what I try to explain...

Picture you are back in high school doing a chemistry experiment. I think it was leaning about acids and bases. anyway, It is the one where you have clear liquid in a glass beaker. With an eyedropper, you slowly drop a different liquid drop by drop into the beaker. At some point one drop suddenly falls into the beaker and suddenly the beaker liquid turns completely purple!!!

This is what my exercise intolerance is like...I try to stay active step by step,(drop by drop) but I never know how many steps/ drops will push me over the edge. It changes with temperature, activity, viruses...

So, I still do my best to be active, but I just don't seem to build my endurance predictably like "normal ANS functioning people". It is like the muscles do okay, do okay, do okay, and then they just give up and give out!

best regards,

tearose

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I have a very good article about POTS and decreased heart volume that explains why exercise is so hard for us. It is like asking a heart failure patient to exercise.

I've offered it before, about a year ago, but if anyone would like a copy- email me at carrie.jacobs@imail.org and I will email it back to you. Put Pots in the subject line, so I don't think you are a spammer.

The article made me feel better, and gave me the patience to take smaller steps. Incidently, I'm starting all. over. again.

Kits

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