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Exercise?


micheller

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I find that walking is good, but I live in an area where there are no hills! If I try walking in an area which is less flat, I tire and get breathless very quickly. I suppose that is why some of us don't mind treadmills as the incline can be controlled.

Swimming is also OK though, again, I tire quickly and it seems a lot of hassle for 10 - 15 minutes swimming. That said, I do find my fitness improves and I feel better in myself. For reasons I have never worked out, it does result in more weight loss than I would expect given the short time I swim.

I was advised to try pilates. I think it has helped with muscle toning (to the extent I have any muscles to tone!) and stopped my neck and shoulders aching. I am thin and pilates has not resulted in any weight loss. Much of the routine is done sitting or lying down and it is easy to pace myself without it affecting others in the class. There is also the bonus of a mat to lie on if I am not feeling great! It is important to find a decent class. The ones at the gym were way to hard. I found a place that is run by physios and where there are small classes so they make sure you are doing the right thing and don't get injured.

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I have found yoga to be the most beneficial for me. I agree with Cath UK that it's important to find a good place. I started out slow with gentle yoga 3x's a week and gradually felt well enough to finish an hour of the regular class, also 3x's. This took me about six months to achieve. It was kind of a step forward/step back process, so don't be surprised if you need to back off sometimes. I did that many times but eventually I found what works for me.

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I have always detested exercise, especially the kind done in gyms with machines. But I bought a good used recumbent bike (Schwinn) and find that I actually enjoy using it. I started with five minutes a day for a week, then ten minutes, then fifteen minutes. . . . I'm working up to 45 minutes. It's especially easy when I do the exercising while watching TV. I generally feel stronger, and I can walk more vigorously on the few occasions when I go out.

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I can only do aquatic exercise, anything land-based aggravates my EDS too badly. The pool not only supports my joints, but has the added benefit of helping to stabilize my hypotension. I just have to be careful to exit the pool slowly and carefully. It can be a trigger for syncope when I get out and don't have the water pressure, so I make sure to exit very, very slowly. I have a port/cath, so I can't swim as it needs to stay dry. But I find even walking in the pool is very helpful. I have a PT evaluation in a couple weeks, and I am really looking forward to getting back in the pool, it really, really helps.

Sandy

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