Exercise: Is It Safe To Push Ourselves?

[khaarina]

So based upon what I've learned so far about POTS, I am pretty sure I am not going to drop dead from my illness any time soon, but every day I am faced with the question: How much is too much? Exercise makes us sick, but lack of exercise makes our conditions worse. What do you do with this? My doctor doesn't seem to have a clue so I would like to get your opinions. Do you think it is safe to force ourselves to exersize? How much is too much? It can't be a good thing to have high/low blood pressure and lack of blood flow to the brain and other organs, but could we actually be causing permenant damage to our bodies when we push ourselves to do things that are hard for us to do? Or is it worse to let ourselves become deconditioned?

[spinner]

Great question, but nobody can answer this for you other than your doctor since obviously no medical advice is given on here.

I suspect you might get ten different personal opinions from 10 different people.

Ive noticed that excercise is absolutely essential for some to prevent DA from getting worse or from

making a personal functionally disabled.

On the other hand your body will tell you end of day if you did too much I suppose by a nervous/ cns, sympathetic,

automatic, peripheral, whatever nervous system overload. For me that feels like the aftermath of a seriously

exhausting heat illness of some kind.

I can only say for myself i pace myself with excercise but i keep at it. I push myself occasionally but its more along the lines of increased time rather than bumping my BP to extreme levels.

I avoid heat obsessively and hydrate myself obsessively.

I also have a pulse oximeter so i can track whats going on.

Mostly I walk, but i also bike and especially swim. But its at a much lower extremity than my previous tennis days.

Im the turtle, not the hare these days. But ive found I enjoy a slow steady 1 hour walk in the cool of the night

or a 45 minute steady swim.

[margiebee]

I wouldn't say that I need to push myself as in "I need to run 8 miles every single day and do hours of cardio", but in the sense that I push myself to work out when I don't feel like it yes, I find that immensely helpful. For example, I have had an ongoing tension/TMJ headache for over a week now. Yesterday I finally decided, I have got to work out, even though I feel like crud. I went and did 25 minutes on the recumbent bike and some strength training, and I felt a lot better. This is how things generally work for me, it might not be the same for everyone but normally its a huge ordeal to actually get me to work out and I do have to force myself. But I always end up benefitting from it. Now, if you get VERY sick afterward you may be pushing yourself too far. But a lot of times I do feel a little worse before I feel better. I think the deconditioning factor is way worse, not that its what causes POTS but I feel it can complicate it a lot.

And as Spinner says, hydrating like crazy is going to be vital too, usually when I feel significantly ill after working out I will notice I wasn't hydrating enough. For me I can see a direct correlation. But you just have to pay attention to your body.

[looneymom]

From watching my son. I can honestly say he is exercise intolerant. Doctors opinions in POTS articles offer advice in this area, but I notice that it varies. As with any exercise program you should ask you doctor about it. Every person is different because POTS treats everybody differently.

In the very beginning, after my son's visit from MAYO, the doctors wanted my son to start riding a stationary bike one minute, 3-4 days a week. For him it work best doing this Monday, Wednesday, and Friday. Eventually he did it Monday, Tuesday, Thursday. and Friday. The longest he was able to do this was 15 minutes and if he did more it cause more problems for him the next day. He also did leg and arm exercises with light weights. This is our experience with an exercise program.

[Agreeky]

I am glad you asked this because I have been wondering myself. I find I can still do a pretty good amount of excercise. The only thing I will not do is run. My symptoms basically go away when I work out. Other than my neuropathy which gets worse. Even my breathing gets better. Thught it would be the opposite. But I worry I will make my body crash sometimes.

[Relax86]

I made the decision to push with exercise. I was cardiac cleared as in my POTS was not from a cardiac reason and felt safe pushing thru. I started with seated ex's, low reps and no weights. This was a time when I was bed bound. I gradually added weights and progressed to more sets. I would usually have a bad day after exercise followed by 3 better days. The pay off seemed worth it to me. It took over a year. I was calling myself 90-95% better when I decided to add cardio to the program. Seeing a lot of people on the forum who run I figured that giving that a try could only help. I did 20-25 mins 4 out of 6 days in the week and I had a pretty bad crash. I can't really say it was the cardio but it was the only change I made. I also have never tolerated cardio - even as a kid. I always had a high HR. I am pretty much recovered from that flare (lasted May 23-June 8). If you can believe it ....I'm actually going to give the cardio another try. Just 10 minutes, lower my speed, and 2 times a week. POTs reminded me that I have limits but it's not going to stop me from trying.

[Freaked]

I haven't really started an exercise program yet, since I haven't been diagnosed and I'm too freaked out now to try it without guidance. I did do a bit maybe two months back, though. Recumbent stuff since I was bedbound at the time (and still amn't great) but I think it was helping. The only thing that set me back was I went through an icky spell of ectopics that scared me, but other than that I was actually feeling a bit better. The ectopics may have actually just been a side effect of lowering my heart rate I suppose, like how you tend to get them at the end of a flu instead of in the middle.

But if I push myself too much with upright stuff, I normally pay for it majorly with feeling crap. I'm just not well enough atm.

[westernmass]

Before POTS I was very fit and exercise was not just an important part of my life but a huge stress reliever! After POTS, when I was given my exercise plan by my doctor... I STRUGGLED through ten minutes of recumbent bike per day. I was supposed to up the time by three minutes a week, until I got to 45 minutes recumbent bike 6x/week. It went much slower than that- at first I could only do a couple days a week. Sometimes I'd get up to twenty minutes, then crash and have to start over at ten. It was frustrating on so many levels!

I am currently at a place where I do upright cardio (treadmill, stairclimber, hiking) 30 minutes 4-5x/week. I do about another 30 minutes strength training, and one or two yoga classes a week. I feel SO much better and stronger! I am able to better tolerate exercise, and can myself being stronger. I still struggle with POTS (cleaning dishes set me off yesterday- spent about an hour passing out and regaining consciousness...ugh!)

I think it's important to listen to your body. Push when you feel you can and nourish/relax/rest when you need to. Take baby steps! Every tiny positive thing is better than no positive thing

[Christy_D]

My son tries to do water jogging in the warmer months, recommended by a couple of doctors, and just started using a recumbent bike a month ago. His doctors want him starting slowly and working his way up. If he over does it, he will feel worse and unable to exercise which gets him no where. Also, he has MCAS, and exercise can make that worse. His MCAS doctor says my son does need to exercise, but he needs to find out at what point the exercise makes him worse. It is a fine line.

[Chaos]

I have always been a huge believer in the benefits of exercise and from the start have thought that exercise was crucial to getting me out of this situation.I still think that but have had to step back and totally rework how I'm going about it based on recent testing I had done.

My POTS doc had said to do 45-60 minutes of vigorous exercise every day. For the past 2 years, I have been in a cycle where I would gradually work up to that, sustain it for a few weeks, have a terrific crash, end up back in bed and non-functional for a period of time and have to start all over again. Even when I was able to do the level of exercise he recommended, I did not feel well and for the most part was not able to do much of anything else as far as activities of daily living. other than the exercise, because it wore me out so badly. Stupid on my part for not listening to my body, but what my body was telling me didn't match what I knew in my brain about rehab and exercise and how to get better after an illness, so I kept trying to make my body do what my brain thought it should be doing. After 2 years, I decided I needed a new approach.

Recently I had testing done at the Workwell Foundation (formerly Pacific Fatigue Labs). They do a 2 day cardio-pulmonary exercise stress test that analyzes VO2max, CO2, etc and compares how you do on day 1 and then how you do with the exact same test 24 hours later. In this way they are able to find and document Post Exerertional Malaise (PEM) (aka Post Exertional Neuroimmune Exhaustion or PENE). For a normal person or even a person with "normal" diseases like heart or lung disease, you don't find more than an 8% variation between day 1 and day 2 results. My results showed up to 43% variation in some areas. The nice thing about this test is that there is no way to "cheat" the test. You can't really decide to hold onto more CO2 at some point, or tell your muscles to utilize more O2 at this point or not at that point, or tell it to drop your anaerobic threshold. Your body just does what it does and they are able to show what it is (or is not) doing.

Based on this testing, and having read preliminary gene expression studies done at the University of Miami showing that excessive amounts of exercise in patients with these types of conditions actually trigger autonomic instability which then triggers immune dysfunction, I'm now following a much more conservative approach to exercise. I wear a HR monitor at all times and try to avoid exceeding my anaerobic threshold with any activity I do. I do short intervals of exercise (like 3 minute blocks) because my testing showed that I go into anaerobic metabolism within 3 minutes of exercise/activity and at a very low HR, which causes the excessive fatigue that I was always having.

Having done this for a couple of months now, I'm doing better, definitely more functional, although not "well". I'm realizing, by using my HR monitor and a symptom log, that my body is actually pretty smart and if I'd been more willing to listen to IT these past 4 years rather than trying to ignore it and listening to my brain instead, I'd probably have been better off.

Like others have said, it's a fine line. Before I became ill, I might feel bad before I exercised and feel better after. Once I became ill, I never felt better after exercise; even gentle exercise put me back in bed- especially at the beginning. But my fear of the dreaded D word (deconditioning) was such that I was absolutely determined that I wasn't going there, so I kept pushing to make sure THAT wasn't the problem.

Bottom line...listen to your body. Gentle exercise is probably helpful but if it's wiping you out for days afterwards, that's not helpful.

[spinner]

From watching my son. I can honestly say he is exercise intolerant. Doctors opinions in POTS articles offer advice in this area, but I notice that it varies. As with any exercise program you should ask you doctor about it. Every person is different because POTS treats everybody differently.

In the very beginning, after my son's visit from MAYO, the doctors wanted my son to start riding a stationary bike one minute, 3-4 days a week. For him it work best doing this Monday, Wednesday, and Friday. Eventually he did it Monday, Tuesday, Thursday. and Friday. The longest he was able to do this was 15 minutes and if he did more it cause more problems for him the next day. He also did leg and arm exercises with light weights. This is our experience with an exercise program.

From watching my son. I can honestly say he is exercise intolerant. Doctors opinions in POTS articles offer advice in this area, but I notice that it varies. As with any exercise program you should ask you doctor about it. Every person is different because POTS treats everybody differently.

In the very beginning, after my son's visit from MAYO, the doctors wanted my son to start riding a stationary bike one minute, 3-4 days a week. For him it work best doing this Monday, Wednesday, and Friday. Eventually he did it Monday, Tuesday, Thursday. and Friday. The longest he was able to do this was 15 minutes and if he did more it cause more problems for him the next day. He also did leg and arm exercises with light weights. This is our experience with an exercise program.

I WONDER HOW HE'D DO IN AN ANTIGRAVITY, COOL, PRESSURED ENVIRONMENT SUCH AS A SWIMMING POOL. For me it is

the closest time that i ever feel completely normal and refreshed. Even just walking in the water is remarkable.

[jangle]

Is it safe to push yourself in exercise? That depends on a number of factors and is really only something your doctor can tell you.

When you have variables such as MCAD or EDS, it's best to respect that there is a wide variation in POTS patients and what is ok for one person might not be ok for another.

For me, I don't have MCAD or EDS. I've pushed myself to 210 bpm in my exercises and have gone over 10k jogging. I do weights, rows, and stairmaster as well. This has led to a reduction in my HR and symptoms.