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.

[jimeka]

Hidden 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 🦋 🌈

[Hidden in reply to jimeka]

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.

[jimeka in reply to Hidden]

Hidden 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 🦋 🌈

[Hidden in reply to jimeka]

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.

[ssdw1958]

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.

[Jesmcd2 CommunityAmbassador]

Hi Hidden 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 🌠🎄

[Hidden]

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

[erash]

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?

[jimeka in reply to erash]

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 🦋 🎄

[bbonnik83]

Hi, just wondering if you have had any progress/diagnosis on this issue? My son is 13 and seems to be experiencing something similar, has not been able to stand still for the last couple of years, but no problems at rest, either sitting or laying down. He describes it as itchy/irritable and has to shuffle back and forth from leg to leg. I have rls and it just doesn’t seem to fit that criteria? His doctor says possibly circulation issues, but we’ve only approached it once and not followed up. Now it’s affecting his school work, ie. when he has to stand so thought I’d try find out more. Thanks!

[Hidden in reply to bbonnik83]

I have not got very far with it at all. It just seems to be something we have to live with. I have not seen the neurologist since my first appointment my MRI was normal and blood tests fine, so I have not been called back. Given an appointment for June now so will ask about this again then. I did find a condition that does this to people but it didn't seem to fit us. I will look it up again and get back to you.

[bbonnik83 in reply to Hidden]

Thanks for your reply, I’m sorry that you haven’t gotten any further results though, that must be frustrating. My son had a condition before this where he couldn’t mobilise much anyway, so didn’t notice it at that time. He then had a surgery and has fixed that issue, but the more he continues to mobilise the more it’s becoming an issue, now it seems like not just an annoyance but also possibly dangerous, ie. he pointed out he doesn’t like doing science experiments because he has to stand up, and you can imagine moving back and forth with dangerous liquids etc is not ideal. Anyway, I digress, thank you again and I will keep looking into it too. I did come across a couple of things of interest, there was hyperthyroidism and diabetes, of which he only fits a couple of criteria but keeping an open mind. And although I’m pretty sure he hasn’t got diabetes, he has had higher than normal blood sugar in the recent past and it was looked into, so I’m keeping that in mind. I think that basically leads back to circulation. Just thought I’d share in case they are any help, and if you do find that info that would be good please. Good luck and thanks again

[bbonnik83 in reply to bbonnik83]

Oh just reread and saw you asked in thyroid forums, I’ll try and find that info again too.

[bbonnik83 in reply to bbonnik83]

It was only about them being itchy I think, sorry. That was on Healthline - itchy lower legs. I hope I am allowed to post that, if not sorry please delete it.

[Hidden]

I have MS friends who talk about it! You are not alone! ❤️