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POTSdad

Reverse Deconditioning After Flareup

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My daughter had a significant flareup of POTS about a month ago, and has been in bed a lot since then. She is barely able to walk without someone supporting her, and has lost a lot of her endurance. If she has a good day she is able to walk a bit, but then it takes a few days to recover.

She wants to gradually get back into exercise to reverse the deconditioning. What would you suggest? I was thinking of putting her reclining exercise bike in her room (it is too hard for her to go downstairs), and having her increase her exercise length very gradually while wearing a heart rate monitor, to ensure the heart rate does not go too high.

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I don't have the luxury of rehab cardio training (that would be the best pathway)... so I had a personal trainer devise for me a program that was not posturally challenging and he monitored my heart rate as I went. Progress was slow but encouraging and that was when I was feeling well. Right now I don't think I could do any. I wonder if there is anything out there that explains rehab exercises that could be done from home, even while lying down? Resistance would be key I imagine. Good luck with it POTS Dad. What a lucky girl to have a Daddy like you who cares!

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I'm still recovering from a major flare-up. I've come a long way since August, but I'm still not back to where I was before the flare-up. I started exercising with small hand weights and "bicycling" my legs while laying on the couch. I couldn't do stairs either, so I would challenge myself to just walk around a bit more each day (or couple of days) -- I'm talking just very short walks like to the bathroom, to the kitchen to get a drink, to the window to look out, to the front door, etc. Then I started on the recumbent exercise bike -- with a twist. I couldn't even sit on the bike for very long without feeling awful, so I laid down in front of the bike and peddled it from that position -- you have to pedal backwards, but the resistance settings still work. Eventually, I started mixing the supine pedaling with some sitting up pedaling. Recovering from a flare-up is emotionally and physically hard. It's so tricky to judge that fine line between doing enough to make progress, and avoiding setbacks by not overdoing it. You too have an important role in this whole process. It will make a big difference for your daughter to have some reassurance and cheerleading from a loved one. I'll be praying for you both.

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If she is having trouble walking, practicing walking could be a good start to getting over the flare up. That is how I started, a few steps at a time, building on that until I felt well enough to try other forms of exercise. I am no doctor, but any kind of movement should help. Another idea is stretching, which can be done lying down. Even getting out of bed for a while to sit in a chair is a good transitioning step.

I know my parents were a big part of my recovery and she is lucky to have you!

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