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Inability to stand still/restless legs when standing

I have been unable to stand still since aged 15. Trying to do so make me feel very uncomfortable so when on bus stops etc I have to pace and have done for many years. Now both my children have the same issue but I have not come across anyone else with this and have posted on restless legs forum and thyroid forum looking for fellow sufferers. Wondered if it might be MS related.

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mandyjane i have had Rls for many, many years. My neurologist said that ms and Rls go hand in hand. Fortunately pramipexole works for me. 8 years ago when I was put on pramipexole I had the first good nights sleep in 25 years. Unfortunately it's hereditary and my grandma, mum and now 3 children have it. You need to talk with your neurologist. Please let me know how you get on, and if I can help in anyway private message me. I am not a doctor, just a fellowsufferer. Rls can be unbearable. Blessings Jimeka 🦋 🌈

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Most people get it when lain in bed though. We get it stood up. I cant seem to find anyone else who gets this. I am curious more than anything but also concerned about my children. I am not sure when I next see neurologist but will ask.

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mandyjane i get it stood up. I wore a figure of 8 into our living room carpet. I get it mainly at around 4/5 o'clock, before the next pill is due. I get pain particularly in my right leg but if I have had a lie down, I get it in both legs. I also get it in my arms. I cannot take any medication that begins with anti, such as antiimflamatories, anti histomeans, my spelling is rubbish! Lol you get the jist, anyway let us know how you get on, have you tried Rls-uk? Blessings Jimeka 🦋 🌈

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Yes.That sounds more like what I have had. I remember in school as a teenager when waiting for the class rooms to empty going round and round in circles. Yes I have tried RLS uk and they made some helpful suggestions but until you replied I was thinking having rls when trying to stand still was unique to my family. Thanks for reply.

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I don’t have that all I have are legs that don’t want to walk right I have foot drop on my left leg.

Good luck to you.

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Hi mandyjane Welcome to the MSAA Community 😊. Although I would hate for this to be the reason your here!

My MS story started with RLS except I looked like a drunk walking for about 4months. 😄😌 Not saying I wasn't part of the time!😉😄😄 but that's what started the MRI's and my journey.

You should talk to your PCP and see a good Neuro! I wish you tons of luck!!😊

Jes 🌠🎄

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I have had rls since childhood and now Ms. In fact when I had my first sleep study done it showed rls was waking me 36 times an hour and I was never reaching deep sleep. His notes said that he had suspicion of underlying neurological disease.

Dr gave me rls meds at night and provigil for morning I remember feeling awake for first time ever been on provigil ever since that was like 20 years ago. I did find more luck sleeping wise with trazodone rather than rls meds that felt like they werent working

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My rls symptoms began at night (mostly left calf) but now occur during the day too if sitting still. Occasionally affect my forearms.

jimeka do u get augmentation symptoms from the meds? Where they no longer work as well?

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erash i have had augmentation 2/3 times now. It got where the doc just kept increasing the dosage whenever the meds weren't working. Rls uk told me about augmentation even mydocotor didn't know. Blessings Jimeka 🦋 🎄

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