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Walking And Being Upright Is So Painful


Hearts
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One of my constant problems is the pain in my legs/knees/feet when I stand or walk. I assume it is from blood pooling since laying down quickly relieves the pain but it is difficult to even walk through my house even briefly (on top of the orthostatic issues and everything else) it feels like it takes every ounce of energy and strength I have which isn't much. I cannot wear compression hose because it makes the pain so much worse and I have tried many kinds many times. What do you do when walking is so difficult and painful? Does anyone else have difficulty wearing compression hose due to pain?

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Hi Hearts,

I'm sorry you are in so much pain. My son has the same problem but his condition has become much worse. Our cardiologist did suggest compression knee high socks at 15 but Tyler could not stand having the socks on. Right now my son is currently wheelchair bound due to tremors and other symptoms. My son had recent testing that indicates anti-neuro auto-antibodies in the brain that would cause the nerologigical symptoms and pain. A year ago my son got sick with the flu and has not been able to stand or walk. My son is currently recieving IVIG treatment but is going to start a gluten free diet later this week. He just finish up an IVIG treatment this morning.

Have you heard of gluten ataxia? There are some old post on this topic in the forum and some research online. My son is not gluten sensitive or intolerant. All his test are negative. However, our cardiologist has suggested that my son try the diet to see if it will help with some of his neurological symptoms and the pain levels. Before my son went totally down, he was able to walk. Tyler would complain of pain from waist down. He might be able to walk 100 yards and then have to stop because of the pain.

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Keep trying. I too had pain but still tried and now I'm functioning a bit better. Recumbent bike helped not at first as I was so sore. Started at 2.5 min three times a week.

In regards to gluten. I gave it a whirl for a month. Have a little gluten here and there and noticed GI symptoms a bit better and little less brain fog. So for me that is worth continuing.

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Leg pain is something I've picked up in the last year. It is from the hips down. I do have one bad hip joint, but I don't think it explains all the leg pain that occurs from standing longer than a certain amount of time. The only thing that helps it is my nightly sleep.

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Yes it's the being upright or evening sitting that brings the pain. When I first get to bed it slowly subsides and goes completely. I wake up without pain and within a short space of time it comes on with a vengeance. It gets worse as the day progresses.

I can't wear anything tight and that means compression garments cannot be used. The neurostim does help a lot and I see that as being my lifelong friend.

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TCP, may I ask what Neurostim is? If it helps I would really like to know about it.

Thanks again for the responses. Sometimes I feel like a wheelchair part-time would be such a relief but vanity and hard headedness (plus feeling like others wouldn't understand my need for it) really prevents me from even looking into that. At least I know I am not along with this pain. It's truly frustrating and uses so much precious energy some days.

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