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I had managed to work my way up in small stages to walking a mile a day without any big problems. But since my flare up of symptoms, I'm often finding it a lot harder to walk. My legs feel heavy and as if they don't want to automatically do a walking pattern. Also my hip area hurts or feels uncomfortable and when it's bad I tend to end up walking in a really weird way, generally either with one leg stiff and my foot turned right in, or on the edges of my feet with my toes curled up. Ok, it's weird! I know! ^_^

Does anyone else have a similar problem, or know of anything that will help?

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Me too! It seems as if I can't walk properly, like the automatic button has been switched off. When I force myself to walk correctly and think of how and what I'm doing it gets better. The treadmill helps me do so. I find it really weird!

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I know this phenomenon quite well too! The natural automatism of walking seemed to have disappeared!

However, since I am on Midodrine (5 days now) most of my normal feeling with walking has returned! So I guess in my case it was probably an issue of insufficient vasoconstriction in the legs(?). My legs (and arms!!) now also don't feel as heavy as before!

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There are days I can walk around the block and there are days I cannot. I also have heaviness in my legs at times - I have neuropathy also - feels like bugs crawling on my feet and lower legs. I also have right hip pain - pretty much all the time. I didn't equate it with dysautonomia but, maybe it is.

I find the longer I go without walking (at least some), the worse the symptoms can become so, I try to move around more frequently. I also remember in college my Anatomy and Physiology teacher telling us "if you don't use it, you lose it".

I agree that midodrine is helpful. I suppose since the blood vessels are so floppy, midodrine gives them some tone and ability to constrict. I keep midodrine with me at all times - wouldn't be without it!

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I don't seem to have this while walking but I have had this feeling you've all described while coming up stairs! I have actually stopped midway up some stairs and it feels as though my legs *forgot* what the pattern is and which leg should be going up to the next step! It doesn't seem to happen on the way down stairs, just up! And me being afraid of heights, anyone who knows me knows I hate having the empty space of a flight of stairs behind me going up, so when this phenomenon stops me I get scared, for a second, that it will coincide with a dizzy spell and I'll fall backwards down the steps! I've tried to describe this "legs forgetting how to come up steps" sensation to my doctor, who just looked at me funny and didn't seem at all concerned about it.

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I sometimes go into what I feel must look like a sort of 'knees up March.' Having to force my knees up into an unnatural way to walk. At other times I can barely lift my feet enough - I'm shuffling but not even doing that well. To some extent walking more increases my ability TO walk more. But then I always, eventually, hit the brick wall after days weeks or sometimes months were walking anywhere is problematic and walking for exercise goes out the Window. At some point I get to start a walking program again, sometimes achieving a decent level of fitness only to experience the rapid decline into not being able to walk far or 'properly'again .... it's a bugger of a cycle and is wearing me down.

Blue

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I have this as well. Some days I find I have to walk with a very wide base of support and keep reminding myself to bend my knees appropriately as I move, and other days I feel like I'm very uncoordinated in my gait pattern. As Corina said, it feels like the automatic button has been switched off.

There is more and more research coming out showing inflammation occurring in the brain of people with our compilation of symptoms so I wonder if this is part of why we have problems like this and loss of balance and cognitive issues etc.

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Chaos, what is that information? I would be interested in seeing that.

I also have that problem big time and I use a cane pretty much every day. The longer I walk, the worse it gets and it gets bad enough that if I keep going, I use the cane and a friend's shoulder. It is a bugger. My legs don't feel heavy, they just won't "land" right.

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Raisin- Here is a link to a synopsis article that has links to the specific studies in it.

http://www.cortjohnson.org/blog/2014/07/17/mystery-longer-big-picture-emerging-chronic-fatigue-syndrome-dr-bateman-talks/

While the article is targeted for the ME/CFS population, as you scroll thru it you will see that POTS is directly addressed near the bottom. Also addressed are viral onset, hormonal fluctuations impacting the illness, cognitive issues, immune and endocrine system problems, sleep problems, autoimmunity as a possible cause, and specific EEG findings that could "produce pain and fatigue, poor coordination and balance, slowed and more difficult movement, hypersensitivity and poor working memory." To me it sounds an awful lot like what many of us with POTS describe as our symptoms.

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Corina, an exercise physiologist told me that a treadmill tells your legs what to do and so it kinda "takes over" for the brain a little bit. So, it makes sense that the treadmill would "retrain" the walking. I did great on a treadmill even though I have to walk with a cane. Interesting!

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It IS interesting! I also found out that my walking is better when holding hands though "hands" aren't always available :) which make me think of using a cane too as it may give me more freedom. At the moment though I'm not well enough to go out on my own so I'll wait and see how it goes.

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I get that if I am doing walking that lasts over about 10 minutes. It is like my legs begin to get somewhat stiff and I notice I am working harder at my hip level to bring my leg forward. I have no clue why.

Hey, that is exactly what it is like! Almost like you are having to lug your legs around from the hip and they're not really doing the work themselves. The weird thing is that it comes and goes as well. I wonder what could cause it?

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Climbing stairs/going uphill requires extra HR/BP. For people with HR/BP issues, it makes sense that stairs could be challenging. I used to go up very slowly and that helped.

Treadmills make me dizzy - when I get off them I feel like I am still moving. Unless you have a treadmill in your house, getting to the gym requires time and energy and is hard to do every day. Walking in the hallway at home did the trick for me. From this I was gradually able to build up to other forms of exercise.

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