Exercise Intolerance

[hholmes13]

Does anyone have any issues with exercise intolerance? All of the doctors have said over and over again to me how important it is for me to exercise in order to feel better. However, each time I exercise, I feel awful the rest of the day. The following day, I end up extremely light-headed and nauseous all day and have a difficult time standing up for very long. I had an exercise stress test, and they had to stop the test because I got really dizzy and came close to fainting. It turns out my bp doesn't increase as much as it should with where my heart rate gets to. As the test continued and intensity increased, it started to fall. It has been recommended to me that I do no weight-bearing exercises and stick to things like a recumbent stepper or cycle. (and of course hydrate, hydrate, hydrate! ) I've been following their directions for intensity and time, but it seems to be making me feel worse rather than better. It's tough because I've always been a runner...I miss being able to exercise how I used to. Has anyone else dealt with this? If so, did it get better with time or does exercise always make you feel bad?

Thanks!

Heather

[toddm1960]

Hi Heather, I'm sorry you're having such a hard time. You'll find a large group of us on here that, like you had been hard core exercisers but today can't seem to put 2 workouts into a week. I like you feel just awful for 2 or 3 days after. I'm a personal trainer so I know how to workout and how to start ultra slow, but after 6 years I'm still at square one. I still can't progress or build on a previous workout. I wont give up but you have to wonder at what point are you doing more harm than good. I hope you start to feel better and get back to your old workouts.

[Lovebug]

Hi Heather & Todd,

I have recently started working out again (I was very active as a runner and lifted weights). I'm the type where it is "all or nothing" and would go all out on my workouts. As I got older & married, etc, I slacked off but never felt I was severely out of shape. That's why when I first got sick, I found it funny that I couldn't walk up a flight of steps without getting SOB and Tachy. I could do it one day, but not the next. After testing at the Mayo Clinic in Jacksonville, I was told that I was out of shape and needed to "exercise, exercise, exercise". What did I do? Just that! And I did it hard with 5am classes for 8 weeks, alternating between spin & body pump. Needless to say, my muscles would fatigue out alot easier than I had ever remembered when doing weights and I'd develop severe diarrhea on days of high cardio (spin). I thought my IBS was just taking a turn from constipation to diarrhea but I now know it was the Dys. I think it's all related anyway but I just got worse and worse until I quit exercising altogether...didn't know what was happening to my body. NOW (3 years later & after being diagnosed for a year) I'm really trying again. My doc told me slow & low on EVERYTHING: meds, supplements, exercise. He suggested walking on the treadmill at a very slow pace for 2 minutes a day for a week, then up it to 4 or 5 minutes. Then more. However, not to push myself too hard. Over time I have started feeling alot better and even did well with exercise. I've worked up to doing 30 minutes on treadmill with 1# weights in my hands (I do arm exercises) and I get almost 1.5 miles done. As you can see I'm not burning up the track but 10 of the 30 minutes is at a full incline so my heart rate gets really high. I've noticed that I've had joint problems (lots of pain) since before the exercise but it has gotten alot worse after. I just saw my doc on Thursday and he told me to cut back on the exercise.... So now what!?! I felt so good about the progress I was making but my wonderful MD said my body just isn't liking the exercise. He said I could do the arm exercises but to do them seperately and not to incline my treadmill. All kind of thoughts went through my head, such as...what if this is arthritis or did I injure myself etc....but my doc doesn't like anyone else treating me b/c he says the overall medical community has no understanding of Dys and they will just "mess me up" by loading me up with meds. I tend to agree with him but I really don't want to scale back on my exercise. I apologize for the long post but you can see that everyone is affected differently but one thing is common: we are all affected by this dang disease!!! I wish you well and hope you find a happy medium with your exercise. I'm just happy to walk around without a racing heart now!

[enko]

For years I was training martial arts and had to quit because more and more often on courses I would get SOB, rapidly exhausted and couldn't stand the tachy I'd get. For times I would just fell on the ground and choke, struggling to stay conscious. After I've quit, I've tried to stay in shape with jogging and other exercises for strength, but my tolerance time was on zero in very short period of time. Now I try to walk everywhere I go, and there are days when I can walk for an hour or so, but on some other days I'm so tired and confused that I don't know what am I doing and can't walk for even five mins. And my docs say: "YOU'RE JUST OUT OF SHAPE!". Good for them. At least they don't need to worry about not telling me that I need to exercise. I really would like to, when I WOULDN'T START CHOKING WHILE DOING IT! Not to say what tachy does to me..

Sorry all, docs tend to make me angry at times And very disappointed (most of the time)

[toddm1960]

The range of exercise ability among our little forum runs from people that can run half marathons and being able to lift weights every other day. To some that can't walk to the bathroom. Those people that can't exercise should not be told all you need to do is try harder, and on the other side those that can exercise should not be told to stop because it may hurt them. We all need to find our little nitch and go from there.

[firewatcher]

I was always the most active member of my family and like enko, spent years training martial arts and weightlifting. Even doing all of this, I could never run without coming within seconds of passing out. I too was told that I was lazy and out of shape. I never had the bone-crushing soreness till the last several years though, it starts with brainfog and total body fatigue then moves into pain and soreness like I've been hit by a car. It used to take me 3-5 days to recover after a single bout of of exercise, but it has been getting better in the last several months. The two doctors who understand the most have told me not to push myself, that my body simply can't handle the physical stress and catecholamines. My Physical Therapist has told me that I need to train my HR to come down, not go up: she says that my body reaches a tipping point where my HR simply keeps climbing regardless of the workload so I need to reach a target HR and back off till my HR steadies to a normal pace.

I can currently manage one day of Pilates a week, and only have that afternoon and some of the next day to pay for it instead of 4-5 days. I tried to up the exercise and felt awful. I'll take the increase in daily function as my extra exercise instead.

[enko]

Oh yeah, being lazy, I've forgotten to wrote that one.. one of my favorites..

[Chaos]

I'm a physical therapist so in my book exercise has always been the cure for everything. LOL. So imagine my surprise when I got this disorder and found that not only was exercise NOT a cure, but it was making me significantly worse every time I tried to do ANYTHING! I'd try to do a little and end up back in bed for days. Then think, ok that was too much, back off and try again, and ended up back in bed for days again. Yeesh.

Finally I just decided that getting up everyday and doing my basic ADLs (bathing, dressing, etc) WAS my exercise. Figured if I stood up to dry my hair and my HR was 150 and then would lie down with a HR of 60 and stand up and do my makeup....back up to 140...lie down and back to 60. Looked like interval training to me!

I did go thru cardiac rehab when I got on a decent med routine and I think it was helpful. But even with that, when I have a flare, I'm right back to where I was before I started it.

I've never bought the "deconditioned" theory. How can I walk 4 miles and swim a mile one day, do a 2 hour advanced yoga practice the next and then the next day not be able to walk across my bedroom without having tachy,SOB and feeling like my legs will collapse any second. Even now, when I'm in a pretty good place with this "disease", I can do a 10 mile mountain bike ride one day and the next barely make it up my stairs without panting and having to lie down when I get up there. (My son even does a really good imitation of a sports broadcaster commenting on someone trying to achieve the summit of Mt Everest when he watches me struggle to get up the stairs. He makes me laugh and then I have to sit down ON the stairs because I REALLY can't breathe then!)

Like others, I've noticed the joint pain I had for years actually was better when I wasn't exercising and now that I'm back to doing as much as I can, it's gotten a lot worse.

Heather, hopefully with time, you'll be able to do a little more, going very slowly and listening to your body and over time maybe you'll get to be like a lot of us who are able to do more...at least some days. Hang in there!

[Birdlady]

Good point Todd. I think we all need to be more understanding that each of us have a different level of functioning. Even though I am exercise intolerant, I still can get around pretty well I think as long as we don't mix heat into the equation...

The range of exercise ability among our little forum runs from people that can run half marathons and being able to lift weights every other day. To some that can't walk to the bathroom. Those people that can't exercise should not be told all you need to do is try harder, and on the other side those that can exercise should not be told to stop because it may hurt them. We all need to find our little nitch and go from there.

[Godsgal]

I have had a terrible intolerance to physical activity in general. My MCAD meds have helped my symptoms improve greatly so physical activity has been easier for me. Not exercising yet but physical activity has been more tolerable. I also know that Dr. Levine's exercise protocol includes sitting exercises which are best for people with POTS (recumbent bike, rowing machine, etc). That helps to avoid the blood pooling in the feet and the subsequent tachycardia and/or blood pressure drop.

[hholmes13]

Thanks for the info everyone! I appreciate you all sharing your stories with me about this stuff.

[handmadebyemy]

I have exercise intolerance and I think I was pushing myself too hard in the beginning. I'd recommend taking it slow (start with a 10 minute walk at a leisurely pace) and build up from there. The good thing about exercise is that its cumulative, so taking a 20 minute walk does as much good as taking ten 2 minute walks

[Friedbrain]

FWIW.......I've been working out regularly for about five years. My health tanked, and I started having problems after my workouts, too. I would feel weak and shaky. What I noticed over time is that salt helped me recover. (At first, it was because I'd go home every time and eat an entire bowl of very salty popcorn and feel miraculously better). I got those electrolyte packets from the grocery store that you add to water, the one with the highest sodium and lowest sugar content I could find (I always took a bottle of water around with me while working out to keep hydrated, but that apparently wasn't enough), and added an entire packet to one bottle of water. It helped immensely! I stopped craving popcorn when I'd come home, and felt much better.

I tested my theory once, while on a holter monitor, by working out with simply water. Afterwards, I pretty much had a partial seizure (according to an ER doctor; don't know if that's what it was). I was weak and dizzy, then my heart started racing and I felt head pressure, then I transitioned into all-over body shaking. It was pretty intense and scary. My husband had to drive over and bring me an electrolyte packet and salty peanuts. I sat in the car with him eating/drinking until I calmed down. (I didn't go to the ER in that instance because I'd been to the ER for a similar daytime incident-don't know what triggered that one-a week or two prior)

Long story short-when working out, I lose water and salt. I think I lose too much salt, which can really mess me up. I've been on and off florinef, but I didn't like it so I chose to try to add it to my diet when I can. I'm a work in progress on this, but I definitely know that adding sodium *while* working helps.

[ramakentesh]

ive exercised the entire time ive had POTs - before, during crash and in relative remission (5% symptoms or so currently but that can vary daily). i can currently run 6kms, I spent all last week working with a wheelbarrow and crushed rock in the garden with no ill effects.

Exercise MIGHT improve POTS (im not really certain of this, since ive always done it), but it DOES NOT protect against relapse. I ran four kms the day before my last relapse following long haul flight.