Exercise Aftermath

[firewatcher]

If it hurts so badly, why do we do it?

[all4family]

I put Better Mood/Self esteem for the benefit of exercise question, but I think that my best benefit is less muscle pain, and stiffness. Worse in some places, but I have to compromise somewhere!

Suzy

[Rachel]

I can't vote in the poll. The options don't quite fit me.

Here are my answers:

If I push myself to the best of my ability, I can:

Exercise for 10 minutes once or twice a week. The 10 minutes is very broken up, though. I can't exercise for 10 minutes straight. Other than that, daily life is my exercise!

After I exercise:

I am completely wiped out for the rest of the day, and my ANS symptoms are worse for a day or two. Even without exercise, I can't make it through a simple day at home without resting. I usually crash come 6 or 8pm and stay in bed for the evening.

For me the benefit of exercise is:

Yet to be seen. Theoretically it should improve muscle mass. I haven't noticed an improvement in ANS symptoms, blood pooling, energy, etc.

Rachel

[firewatcher]

I can't vote in the poll. The options don't quite fit me.

Here are my answers:

If I push myself to the best of my ability, I can:

Exercise for 10 minutes once or twice a week. The 10 minutes is very broken up, though. I can't exercise for 10 minutes straight. Other than that, daily life is my exercise!

After I exercise:

I am completely wiped out for the rest of the day, and my ANS symptoms are worse for a day or two. Even without exercise, I can't make it through a simple day at home without resting. I usually crash come 6 or 8pm and stay in bed for the evening.

For me the benefit of exercise is:

Yet to be seen. Theoretically it should improve muscle mass. I haven't noticed an improvement in ANS symptoms, blood pooling, energy, etc.

Rachel

Now you can! Thanks for the input!

[Dizzysillyak]

This is a tough one for me too ...

I'm typically physically active for 1 hour and then resting either laying down or sitting for 1 - 3 hours depending on how I feel ... but I absolutely have to lay down flat 3 times a day right now for an hour each time in order to get blood back into my brain ...

When I was in PT (where 95% of my excercises were done laying on my back and only 5 - 10 minutes slowly pedalling on a recumbent bike) I felt energized after leaving. Honestly, I think it was the laying on my back that did it for me ... I always feel energized after an hour of laying on my back ...

If I don't rest every few hours or I do something really taxing, I'm wiped out for 1 - 3 days afterwards ... this is post exertional malaise for me ...

Clear as mud ?

[Guest tearose]

Why? Just to be sure we are not de-conditioned?

If I have overdone it, I will suffer. Usually starts with a fast smacking headache, followed by weakness and fatigue.

tearose

[yogini]

For most people with dysautomia, if you feel sick after exercising or your symptoms are more severe, you're exercising too hard. I worked myself up to being able to workout for 45 minutes on the bike or the elliptical trainer. I could not afford to feel sick, because I was working. I had to increase in 1, 2 or 5 minute intervals per week. IF you increase and start to feel sick, then you know you need to back off.

Before I even got to the gym, I spent a few months walking and doing floor based exercises like pilates on a DVD. Even with those exercises, I started at a few minutes and then increased. Going slowly requires a lot of patience - it's not exactly sexy, but it does get you there - if your body is meant to go there.

To the extent you are able to exercise, it will improve your stamina and your symptoms.

[morgan617]

I paralyze and can't function for days. I have had 3 P.T.'s now that are shocked at my inability to tolerate exercise. And they don't think I'm faking it...oh to have more doctors like there are P.T.'s....morgan

[summer]

One of the first symptoms that increases during exercise for me is brain fog. I had been doing about 15 minutes of slow walking on a tread mill, and by the time I finished doing that, I had difficulty counting my 10 reps of light weight resistance ( I would always loose track and didn't know how many I had done). Talk about feeling stupid! This is the first negative effect I feel. That is followed by the usual fatigue and wiped out feeling.

[potsgirl]

Firewatcher,

Thanks for expanding my initial exercise poll. You've got some good questions that are really interesting to read. I had to slowly work myself back to being able to complete 30 minutes of cardio, and I've recently added strength training for my legs and abs to help stop pooling in my lower legs.

Yogini- I agree with you in that in have to take it easy enough to not make your symptoms worse. I go through 'troughs' where I feel really horrible, and then I'm lucky to even make it to the gym. But I was prescribed exercise by my Mayo Clinic doc, so I try to at least do something 3-4 days a week.

It's great hearing from everyone about their exercise abilities!

Potsgirl

[firewatcher]

Firewatcher,

Thanks for expanding my initial exercise poll. You've got some good questions that are really interesting to read. I had to slowly work myself back to being able to complete 30 minutes of cardio, and I've recently added strength training for my legs and abs to help stop pooling in my lower legs.

Yogini- I agree with you in that in have to take it easy enough to not make your symptoms worse. I go through 'troughs' where I feel really horrible, and then I'm lucky to even make it to the gym. But I was prescribed exercise by my Mayo Clinic doc, so I try to at least do something 3-4 days a week.

It's great hearing from everyone about their exercise abilities!

Potsgirl

Thanks for doing the initial poll. It is interesting how little exercise actually does to improve symptoms! I wish the doctors would take note of this. It will be interesting to see the long range effects of "re-conditioning."

[yogini]

Just wanted to add: One thing that has helped me exercise and recover more quickly is wearing compression hose while exercising.

[Sophia3]

My response to exercise and thus answers vary dramatically!

Thus many of my answers to the same question were the opposite. NO WHERE on the pole did it mention I can WEIGHT TRAIN but only LESS than 20 minutes and only lower body. after 2 years I can only now do two upper body (flies and rear deltoid machine)

If I increase my weights and go over my line (NOT always easy to determine while on adrenalin rush to exercise) I get flu achy symptoms within 5 hours of exercise and like today, and feeling FM and joint pain.

HOWEVER, I still try to exercise twice a week. to give IN to the fatigue (which I deal with daily) WILL worsen the O.I. On the other hand, it's IMPOSSIBLE to be upright some days to GO exercise. Constant balancing act.

and I want to build up my bones a bit.

so for me, as are most polls the CHOICES for answers are too general. And I do not fit neatly into a small box.

[Miriam Poorman-Knox]

When I was in the hospital when I got diagnosed my doctor told me that keeping muscle conditioning is imperative. Now take into consideration we are alot of exercise intolerant folk. I started doing leg lifts in bed. Did the full regimine and crunches and anything else I could think of. I continued to do that 2x day for almost 2 years. It works. Adding weight bearing exercise like walking is great. Remeber when walking that carrying anything with you will increase your hr more. You/We can do anything on the floor/bed that can be done standing. M

[futurehope]

Thanks for doing the initial poll. It is interesting how little exercise actually does to improve symptoms! I wish the doctors would take note of this. It will be interesting to see the long range effects of "re-conditioning."

I have no idea if I'm helping or hindering, but I personally decided that I would exercise to the best of my ability.(I did before POTS as well) Muscles need to be used to retain their ability to be used. It helps being able to stand a bit longer than if I never did any exercise at all. That being said, it certainly takes its toll. For me, I can have several reactions to exercise: a mild fatigue, a "I have to take a nap" fatigue, or a definite need to eat something (to get my blood sugar up), to a delayed reaction where I'm no good for days.

My father may have had POTS. Since nothing was known about it then and they told him there was nothing wrong with him and it was all in his head, his reaction was to literally stop moving. He basically lead a very sedentary life for 40 years and lived til 86. Who would have thought?

But, since I desperately want to be able to live with the ability to do something, other than sit around, I push myself. Though, I have to say I have been able to tolerate less and less exercise as time goes on.

For me, it is definitely a better self-esteem thing. Once I actually do something, I'm so happy that I could. I have a difficult time accepting myself as a total invalid (which I can be, at times), and prefer to see that I'm capable of something.

[tinkerbella]

I'm exercise intolerant after many years of teaching aerobic exercise and nearly passing out each time.

So I was unable to answer your poll sorry HR goes up to 160 just trying to make my bed.

[imre]

This is really a tough survey to make comparisons with. I think exercise takes us a while to get adapted to exercise. So maybe those seeing benefits have been exercising for longer see more benefits as well. If anybody has the time maybe add questions "how long have you been exercising?" and "How many times a week do you exercise?"

[TCP]

I couldn't really answer the last question.

[DeGenesis]

Dat PEM. I think PEM is misunderstood though. Any life stressor can set off PEM-like symptoms in me.

[Friedbrain]

I had been exercising regularly for a few ys before my symptoms worsened. After working out, i became dizzy and then my entire body would start shaking. I received some good advice from here that I still follow. I always have to add an electrolyte packet (no sugar/calories) to water and drink throughout (I tested this theory by not using the packet and had the shakes again-dumb but convincing). Also, the heart rate increases from exercise but when I get done, the heart slows down and my Bp is low so then not enough blood to my head (may be why I got dizzy and then-adrenaline-shaky) so staying down on a mat or laying down a bit to re stabilize helps.

[statesof]

I am pretty much completely intolerant to exercise, I can do yoga with a few easy leg exercises in between stretches but that's about it. If I do anything even remotely physical I'm in bed for days with my brain feeling like its completely washed out and inflamed, vision and cognitive problems, and even laying down feels pretty crappy. My doctors don't feel that my excessive long reaction to physical exertion is a symptom of POTS, but they do see POTS as a triggering factor. Still trying to find answers. I think the hardest thing is one day of overdoing it forces me to basically start from zero all over again.

[TCP]

statesof, you sound very similar with regard to your reaction to exertion as many people with ME experience.

[nomdeguerre0850]

The last question didn't have an answer I thought fit either. I've exercised for years but stopped except for my PT twice a week when I got sick. I still think exercise is critical, but more for an attempt to arrest deterioration, rather than improving my symptoms.

I try to do 10-15 minutes on a Nu-Step, (sort of a recumbent elliptical), on days I am able to be upright. I do not overdo because I do not want to pay the price.

[Jerry]

a mile hike or a 20 minute mowing session is about what I do now. I used to train like mad up until a month ago when this thing, this dys or whatever it is, hit me. When I exercise now, I tend to have increased nausea for the rest of the day. Why do it? Health. It's good for my heart.

[shan1212]

Exercise is tricky to balance, for sure. Too much and I crash for a few weeks (tried too hard to train for a 10k earlier this year and totally tanked after running 5 miles). My POTS symptoms are better under control now, when I can't run more than 2.5 miles, than they were a year or two ago, when I could run 5. So maybe I've finally figured out the sweet spot. I alternate jogging (11 min/miles in the A/C, slower in the heat) or jogging/walking 2 miles with Firm workout DVDs. I exercise 4-5 days a week. The days when I exercise, I do much better in the evening. It really gives me a boost. But I've had to reduce the intensity. And I have to spend a lot of time lying down (thankfully I'm a stay at home mom, so I can do that). Now that my exercise goals are more modest, I find that exercise almost always helps, even if I feel terrible and only make it 3/4 of a mile before I go home and lie on the couch. I'll recover quickly and be fine by today's standards later.

For reference, my doctor pegged me as a 4.5 out of 10 on the POTS intensity scale. I know a lot of people deal with more crippling symptoms than I do. I also was a jogger/exerciser before, so I think that helped. I can't imagine getting into exercise if I hadn't had some residual cardiovascular training in me. And I'm definitely still a shell of my former self. I used to run 5 miles several times a week, do intense workouts, and walk another two miles a day just getting around town. And I rarely sat down or was still. Now my moderate exercise is usually the hardest thing I do all day. I often go to bed at 8 p.m. or take a nap mid-day. But I'm happy that I'm getting the hang of managing my symptoms so that I can do what I need to do each day and have a little in reserve too. And exercise is a huge part of that.