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Yhoun

Starting exercise — increased symptoms

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I just started the modified CHOP protocol — I’m on week 3. I feel terrible. I don’t have a lot more fatigue, which I expected — but I feel more dizziness, there’s a nearly-constant feeling of air in my ears, and I’ve been having GI issues worse than I’ve felt in years. I also feel a lot of agitation in my body, like I have to keep fidgeting.

Last week, I took two days off of work. Yesterday, I tried to go to see a play and had to leave after 15 minutes because my body would not calm down. This morning, I had to bail out of brunch plans with visiting family. I’m so discouraged. 

For those of you who have tried this protocol or started an exercise program, is this normal? Will I feel better? 

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@Yhoun - I have never tried any particular exercise program but did have a PT teach me exercises to prevent debility when POTS is bad as well as slow reconditioning after flares. I know from experience that what you are experiencing is due to doing TOO MUCH exercise TOO FAST. You need to go much slower. Best of luck!!!!!!

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I recovered from Dysautonomia by starting with 5 minutes a day of exercise and when I could handle that I increased by 5 more minutes. Then I stopped cardio and now only do yoga. I know some people here have had great success with the prescribed protocol, but many cannot handle it.  In think in general though when starting execercise you will have increased symptoms.  For me going gently minimized the impact. I also did not exercise on days when I had obligations that I wanted to keep.

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@Pistol Gosh, it feels like I’m going so slow already! But you are probably right — I will decrease the exercise intensity. 

@yogini I will keep trying the protocol for now, but if I can’t handle it, I’ll find something less intense. It’s good to know that you found improvement (even recovery!) with non-cardio exercise. 

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Slow and steady with built in rest days helped me.  I literally started with 3 minutes on a stationary bike.  I can’t do aerobic exercise even every other day, I need two days off and do strength training on those days or completely rest when I have to.  I do a modified Levine protocol but I suspect I am still somewhere in the second month after 4 years!  It’s all I can do.  I think the programs are pretty intense and likely for more functionality fit people than me.  Having said that the water treadmill in the beginning at PT and working with a PT have helped a lot so don’t give up on it.  I now have a bike, rowing machine and regular treadmill at home that I alternate between 3-4 times/week.  

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It sounds like I need to accept that I need to go as slow as I need to go. I won't give up! Thank you for the encouragement.

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