Exercise

[valliali]

I have grown to fear exercise because of the symptoms it causes, but I am trying to ease back in because I know I am not doing myself any justice by not exercising. I used to be a Division 1 athlete in college, so exercising has always been HUGE for me. At first, after I got sick, my heart rate would go up into the 220s very, very easily immediately after exercising. My heart would palpitate non-stop it seemed. I since started taking beta blockers, which has helped my heart issues a great deal. However, I am still very uncomfortable during exercise, and wondering if anyone else has similar issues.

Now, my heart rate stays around 170, and if I am on enough of a dose of beta blocker, that usually doesn't bother me. If my beta blocker is wearing off/not enough, 170 will make my heart feel like it is racing. Many time when I exercise, my heart rate will suddenly start to drop into the 140s, even lower, and I'll get this aura of extreme fatigue. I also become very cold and pale. I think it is a vasovagal episode, as I've read on the internet, but I am not sure why it only happens when I exercise. I do not have vagal episodes at all any other time.

Also, after I exercise, my chest feels really really tight for at least a half hour, sometimes all day. I don't exactly feel short of breath, just like my lungs are resisting a full breath. And, my heart rate will stay high for the rest of the day after exercising, like in the 130s. No matter how many beta blockers I take, it seems.

Lastly, after any kind of exercise, when I am done and sit down/relax, I will feel numerous little twitches throughout my legs from the knee up. Like muscular spasms, only many small ones all over my thigh/butt region. They last for a half hour or so.

Not being able to exercise has been one of the greatest losses that being sick has caused me. I used to rely on exercise daily as a stress-reliever, and I am the type of personality who likes to push my limits physically. I've tried yoga and more easy-going types of exercises like that, but they just don't do it for me. I have always been into extreme sports, like triathalons and such, so I don't know, I'm just trying to understand why this has happened. I am wondering if anyone else experiences these issues? I imagine a racing heart is common with exercise, but is it for the rest of the day? What about the sudden changes in heart rate? The chest tightness and muscle spasms?

Thanks, everyone!

[mountain girl]

Idid not realize how active I really was until this happened to me and I feel so "inactive". For me, I have found I am very limited in tolerating exercise other than just walking, and walking too fast brings on some of the symptoms you describe. My doctor says to listen to my body and suggested that walking was the most strenuous exercise I should do right now. I do some stationary exercises like situps, pushups, leg lifts, even though I can't always do very many, I do what I can depending on the day. I did not notice your age, but from what I read, younger people have a better chance of a full recovery, so I will hope that for you.

[futurehope]

Valliali,

It sounds like you are doing too much. Those are the symptoms I get if I overdo it.

That being said, I'm a firm believer in pushing the envelope for myself. I will not ever give up or stop exercising unless I'm dead.

[firewatcher]

Also, after I exercise, my chest feels really really tight for at least a half hour, sometimes all day. I don't exactly feel short of breath, just like my lungs are resisting a full breath. And, my heart rate will stay high for the rest of the day after exercising, like in the 130s. No matter how many beta blockers I take, it seems.

Lastly, after any kind of exercise, when I am done and sit down/relax, I will feel numerous little twitches throughout my legs from the knee up. Like muscular spasms, only many small ones all over my thigh/butt region. They last for a half hour or so.

I was originally diagnosed as having asthma for a symptom like this. My allergist calls it "exercise induced bronchospasm." It used to be known as exercise induced asthma, but it does not respond to albuterol like asthma does. Your airways just constrict and you really cannot draw a full breath. I also get the zaps/tingles/shocks in my legs after I stop. No explanation there. No one has been able to offer one that explains it other than the nervous system misfiring due to all the catecholamines that exercise stirs up. Do you also get the quick muscle fatigue and severe soreness afterward? If I work out at intensity, my legs are so fatigued for the rest of the day that walking often puts me in danger of collapsing. My legs just give way. I agree that you are doing too much or working out too hard, back off and work back up to it. It may be harder on the ego, but it is easier on the body!

[iheartcats]

I've had those twitches, too...but never really thought about it. Tingly, annoying twitching feeling.

I did have a pulmonary breathing test a year or so ago that came back 'clear' (no asthma). So that was a relief.

Glad I'm not alone. And I'm slowly trying to start to exercise again. I just feel to stagnant and fear it'll make things worse for me if I don't get more active. It's very difficult and at least I'm not alone!

[Brye]

This has been one of my biggest losses as well. I was diagnosed with POTS 2 years ago and I miss my active life I had before!! I was a college athlete as well. I'm really working hard though to get back into shape!! I haven't decided yet if it's been helping yet or just causing too much fatigue. The hospital fitness center here has a supervised cardiac rehab drop in time 3 days a week and I've signed up for that. The trainer who helps out has been very helpful in setting up a program for me with limited positional changes during my work outs. I also know if I do pass out there is someone around who won't panic.

A while back a yahoo group was set up to enable us to support each other with our fitness goals. You Could consider taking part in that. I get CP while working out but I've had all the necessary tests to rule out anything awful. My atenolol does a great job controlling my HR but sometimes I think it works too well. I worked out today and biked 5 miles and my HR didn't even get above 100. At rest it drops into the 40's. I get this feeling like there isn't enough blood flowing to my brain when I'm working out. I sometimes think I would be better off if it ran a bit faster once and a while. If I back off on my atenolol dose though I have a horrible time controlling hand tremors. It's so hard to find the right balance!!

I plan on continue to work on getting back in shape. I just don't see how being inactive has helped me over the past 2 years. I've had some set backs already but I'm not giving up!! I hate the racing heart feeling but with my beta blocker I really don't get that anymore unless I miss a dose for some reason. Maybe you need a different dose or beta blocker to better control your symptoms.

Anyway, I've rambled long enough. I feel your frustration though and hope that you don't give up!

Brye

[valliali]

I definitely hear what you guys are saying about overdoing it, but the problem is that any minimal exertion sets me up like this. So I either do a little something, and endure these symptoms, or I do nothing. And I've tried both means - exercising and doing nothing. And neither seem to work out so great for me. Not getting any stimulation at all is causing me to gain weight, feel more lethargic and sluggish, and I think it is even contributing to depression. There is a lot for me to feel depressed about, but I think exercise helps prevent that. Unfortunately, my body really doesn't reap much "exercise" from super minimal activity. I don't really think I am deconditioned in my muscles or fitness, it's just my heart that causes so many problems. And actually, exercise makes me feel much more awake and alert (probably because it also causes my heart to race). It's such a Catch-22. My heart is like a firecracker - give it a little spark and it fires off. I don't get it. Are the results of exercise (racing heart all day long, chest tightness, etc) a result of adrenaline? I do take a very small dose of propranolol (5mg) which is probably not enough for me to exercise. But anything more than that makes me super tired! Again, a catch-22! I suppose I should take a higher dose in order to get back into exercise, even if it means I will feel more sluggish and tired. I think that might be better than not exercising at all.

[kayjay]

I found that any upright exercise is a nightmare for me.

I ride my recumbent bike but I cannot do the eliptical ( yet).

I also use hand weights on a back roll -you can roll up a blanket or a towel and put it under your spine. This is how I do flys, chest presses etc.

I also joined a gym to use the leg press machine. I do many leg press exercises, seated leg curls, hamstring curls, seated rows, lat pull downs.

I do not think I can really do any cardio. I wore my hr monitor in the tub (130) and in the shower 150+ even on a beta blocker!!!

I am starting to do a little yoga- I was always stong but not flexible. Now that I am in my 30's I think stretching is important.

I do core work on a ball- only if it makes me not feel like vomiting. I have to do everything slowly and with the bike I don't push myself. If don't feel right I make myself get off of it.

My thinking is that cardio is not to important to me... I know how frustrating this is.. I am working on changing the way i think. I mentioned before on this site I gave away my tennis equipment- that helped me... it was mocking me! I need to rid myself of my roller blades next- I don't even want to risk a fall b/c the recovery would be a setback. Good luck to you.

[firewatcher]

I don't think that anyone here is telling you not to exercise, but to exercise at less intensity than you did before. If you walk, walk at a slower pace. The best way that I have found to exercise is to go to the point just before you feel "the burn." Your body will not respond to pushing through like it did before. If you could do 3 sets of bicep curls with a 30 lb. weight before, try 1 set at 15 lbs. If that doesn't make your arms all weak and tingling the day after, then do two sets...Just give yourself enough down time in between workouts. Once a week, I'm as strong as I ever was, but if I try for twice a week, I can't recover and start to spiral down-hill fast. My HR still zooms at the slightest activity and I am on 20 mg of propranolol (walking=130-150bpm, weights=140-170bpm, pilates=130-190bpm) and this is much better than it was before! When I had my cardiac stress test, I told the nurse that I'd hang with it till I got all the way to 220bpm. She looked at me like I'd grown two heads and said that my HR wasn't going to get that high...7 minutes later she stopped the test for extreme tachycardia at 180bpm--at 3.5mph.

Many of us here KNOW what it was like to be athletes, that is why we knew there was something wrong when POTS reared it's ugly head. You aren't alone on this one.

It may not sound like an extreme sport, but Pilates is about the hardest physical challenge I've ever put myself through. It is like static gymnastics! If you want a triathalon, do recumbant bike, rowing machine and swimming. I always had success with martial arts: it is more stop and go than sustained cardio, I just never liked the bruises!

Edited February 19, 2010 by firewatcher

[Detrick7]

This is a great topic. I was agreeing with many of the things previously said. I am currently 31, I believe my issues starting around 15-16 years, but was only diagnosed about 6 months ago. Looking back now I was EXTREMELY active in organized sports and other activities until I was 16-17. Looking back I don't think it was a concidence.

For years I noticed I could not excercise like I should, part of me just thought I was out of shape the other part thought something else was wrong. Anyway, part of me is happy to finally know what is going on, the other part bummed that I probably will never be able to be as active as I would like. I know exactly what other posters were saying. I want to go all out and not do it at all!! I now realize I need to adjust my attitude

My wife started a high intensity workout program about 6 weeks ago. I really want to get back into shape and lose a few extra pounds I have put on the past few years, but the cardiologist not surprisingly said the high intensity work out would be a bad idea, and I agree. I have been working out daily for about a month. I have a heart rate monitor, if I try to do anything over a brisk walk my heart rate shoots up. I have gotten better over the month, I run/walk on a treadmill every other day for 30 minutes, slowly trying to increase the amount of running. It is working little by little, but I want to push myself more! Without the TV on the treadmill I would be bored in 30 seconds. I am going to try and do a 5K (3.1 miles) in a few months. I know I won't be able to run the whole thing, but I need a goal to shoot for.

One question I have is I experience some of the things mentioned here, but I seem to be the most symptomatice shortly after I done working out. When I go back to the locker room to change I get really like headed, see stars or black out a little, arm/hand twitches*, etc.. Does anyone else experience this, or know why it seems worse when I am done excercising than when I am actually excercising?

*I do not actually faint, I just "almost faint", usually in the morning before, during, and after showering. Yawn, get light headed, black out, many times hands and arms twitch and I drop things or have problems buttoning my shirt. The episodes are usually very short 5-10 seconds, but sometimes longer and sometimes close together. I seem to have more episodes now that I am excercising regularly, usually shortly after done.

[kayjay]

Detrick- I have these exact symptoms. I rarely take showers anymore or I put a stool in the shower. I don't have an answer for why. I know that when I get off of my bike I sit in a chair and drink and rest before I even try to walk upstairs ( my stuff is in the basement). I think it has to do with how our bodies are messed up BP wise.

I wonder if you could do more on a bike (get more of a workout) then the treadmill?

I really just want to be a strong as I can be and I find i can work out harder in a seated position with less problems.

Also I take a klonopin every night and actually took one today before I went to yoga class. I think that it has helped me.

Try drinking a V8 as soon as you are done on the treadmill. I do this and even take one in the bathroom when I want to shower. Seems to help me.

[firewatcher]

Exercise is a really potent stimulator of catecholamines and a bunch of other chemicals. While you are moving, your muscles are pumping the extra blood that is in them back into circulation. As soon as you stop, the pump stops too. The narrowest my pulse pressure has ever been was immediately after stopping exercise; I felt weird so I took my BP and it was 87/80. It took 15 to 30 minutes for it to recover to anything that looked even normal for me. I think that you don't feel the firing of the nerves during exercise because they are causing the muscles to move, when you stop they are still firing, but you aren't asking the muscles to move so you feel the tingling. Klonopin immediately after exercise has helped me. I've tried it before exercise, doubling my BB and salt-loading both before and after. The only thing that works for me is immediate rehydration with something like gatorade and klonopin during a slow cool-down period until your blood pressure stabilizes.

[jlmahon]

The ONLY exercise I can do without increasing symptoms is water jogging/strength training. I purchased one of those flotation belts you attach around your waist and jog from one end of the pool to the other. The flotation belt keeps me at shoulder depth and is also a safety precaution in case I faint. I also do various strength training exercises in the pool. I never thought I would be able to exercise again until I went to PT and they put me in the pool for exercise. I feel amazing when I'm in the pool and also when I'm done. The problem for me on land appears to be overheating and position changes. The pool eliminates both of those issues. Maybe water exercise would help you?

[nsirois]

I have grown to fear exercise because of the symptoms it causes, but I am trying to ease back in because I know I am not doing myself any justice by not exercising. I used to be a Division 1 athlete in college, so exercising has always been HUGE for me. At first, after I got sick, my heart rate would go up into the 220s very, very easily immediately after exercising. My heart would palpitate non-stop it seemed. I since started taking beta blockers, which has helped my heart issues a great deal. However, I am still very uncomfortable during exercise, and wondering if anyone else has similar issues.

Now, my heart rate stays around 170, and if I am on enough of a dose of beta blocker, that usually doesn't bother me. If my beta blocker is wearing off/not enough, 170 will make my heart feel like it is racing. Many time when I exercise, my heart rate will suddenly start to drop into the 140s, even lower, and I'll get this aura of extreme fatigue. I also become very cold and pale. I think it is a vasovagal episode, as I've read on the internet, but I am not sure why it only happens when I exercise. I do not have vagal episodes at all any other time.

Also, after I exercise, my chest feels really really tight for at least a half hour, sometimes all day. I don't exactly feel short of breath, just like my lungs are resisting a full breath. And, my heart rate will stay high for the rest of the day after exercising, like in the 130s. No matter how many beta blockers I take, it seems.

Lastly, after any kind of exercise, when I am done and sit down/relax, I will feel numerous little twitches throughout my legs from the knee up. Like muscular spasms, only many small ones all over my thigh/butt region. They last for a half hour or so.

Not being able to exercise has been one of the greatest losses that being sick has caused me. I used to rely on exercise daily as a stress-reliever, and I am the type of personality who likes to push my limits physically. I've tried yoga and more easy-going types of exercises like that, but they just don't do it for me. I have always been into extreme sports, like triathalons and such, so I don't know, I'm just trying to understand why this has happened. I am wondering if anyone else experiences these issues? I imagine a racing heart is common with exercise, but is it for the rest of the day? What about the sudden changes in heart rate? The chest tightness and muscle spasms?

Thanks, everyone!

This is my first post, so forgive me if I am doing this completely wrong! I was recently (a few weeks ago) diagnosed with POTS and Hypermobility Syndrome. I have had twitches (medical term is fasiculations) in my legs following exercise since college-which was 15 years ago. It is just a sign that your body is working hard to regulate itself. People with neuromuscualr disease often have this, but people with other conditions can have this as a secondary response, ie vasoconstriction issues, autonomic dysfunction etc. Typically, it's more annoying than hazardous to one's health.

I hope this helps:)

Fellow twitcher