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gossamer4448

Deconditioning

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I know not moving is bad for pots and i am practically bed bound,should i at least every few hrs get up and walk around my house nothign strenuous just to get my heart used to it so it doesnt get worse. right now i can not excercise unless its very light leg lifts in my bed.Sorry to post here so often i just have a lot of questions and i dont see a doctor for a while .

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I would say yes. If that is too difficult try sitting upright as much as possible. I don't exercise. But I move around. I noticed on the weekends when I like to veg on the couch and play video games I have a harder time with my fatigue. 

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Dear @gossamer4448 - never feel sorry for posting, that is what this forum is all about! -- Yes, you definitely should get up frequently. When I am bed bound I have exercises that I do and have found that especially core exercises are very helpful. Try this one: lie on your back, lift your head and try to push your entire spine into the floor or mattress. You will immediately feel your core muscles hurting. Hold this position for a few seconds, then relax and repeat. In the beginning I could only do 3 repititions for 3 seconds each but it gets easier every time. Also attempt "biking" in bed. But it is essential that you also are upright as often as you can - sitting up and walking around, even if it just to the bathroom. You should try to get up every hour if you can. What I have also found helpful is to step out into the fresh air every day, even if you just sit outside for a few minutes. This helps with circulation, HR and BP.  I know that it is so tempting to just stay in bed because being upright feels so bad - but this will make everything so much worse!! We have to fight POTS - and being active is a powerful weapon!!!

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When I was bed bound, I would sit in a folding lawn chair and put a floor peddler in front. I slumped down as far as I could in the chair because I could barely sit up at that point. I started peddling for 3 minutes. Eventually I was able to work up to 30 minutes and switch to a recumbent bike. You have to start really slow, but everything helps. 

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Also remember, exercise means moving around in general, not just formal exercise.  If all you can do right now is leg lifts, then do leg lifts.  But do one or two more every time.  

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When I was bed bound and eventually hospitalized (weighing 84#), at my release my dys specialist and PT told me to get up every hour and get up every day and get dressed (sweats).  At first my husband and I “danced”, he basically held me upright for a few minutes every hour.  I also started exercise, strength training as others have suggested and a stationary bike for 3 minutes every other day.  It was torture but I either did it or stayed like I was or got worse.  I vowed I would never get that bad again and exercise was/is a huge, huge part of my improvement.  I am still very messed up and housebound but I exercise no matter what.  I do strength training 3 times/week and aerobics 3/week.  I ride the bike or use a rowing machine at home from 20-30 minutes *depending on how I feel* feel rotten=20 minutes, and after 2 years of going to PT I tested normal for strength in my legs and arms in November.  We are working on core getting there too.  It was sheer bloody mindedness.  I started at PT with a water treadmill which was great.  Along with medication, exercise has helped me most.  It’s important to start slowly and listen to your body.  I increased my time on the bike by 30 seconds every week and gave/give myself permission to go easier if necessary.  You can do it!  We are always here for support and encouragement.

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