LUPUS UK
21,384 members16,921 posts

Restless legs 😮

Does anyone suffer with restless legs .

So the last 2 nights I’ve felt like chopping my legs off 😱.

I’ve had restless legs in the past. It’s probably my own fault this time as I’ve been in bed because I’m off work for the holidays . It’s just so frustrating .

Is this something I should see a GP about do you think ? As I’ve had it a few times now ????

28 Replies
oldestnewest

How long do your restless legs go on for and when do they tend to happen?

I tend to get my legs bobbing the second I think about restless legs or when I'm in a particularly dull lecture and I daydream a bit. Just reading this is making my right leg wanting to start! I think mine is just a habit though.

Sometimes it can be stopped by lots of mental stimulation or standing up for a bit and finding something to do in the meantime.

If you can find a pattern with it, you should be able to control it. If not, maybe your gp could help - never thought of it myself.

2 likes
Reply

It only happens at night. I don’t think about my legs it just happens if that makes sense . I tend to have to try and bend my knees .

Reluctant to go to the GP. I do like her and she seemed to understand me but last few times I’ve had a problems she just said

“It’s a part of your whacky condition “

Which doesn’t do a lot of help me really 😐

Reply

My sister suffers badly from it and finds she need to go for a walk before bed or go up and down stairs 3-4 times . A pillow under knees at night can also help xx

2 likes
Reply

Ah that may be why it’s come back. 👍🏼. I started sleeping with pillows at my feet . I’ve recently took them away this week because I couldn’t see the tv .

2 likes
Reply

Yeah, sounds like this is a lot more involuntary.

I can imagine it's frustrating when weird symptoms go from "oh it's nothing" to "oh its just lupus" without any way of dealing with the problem.

Hope you find some good advice here!

1 like
Reply

Thanks . This place is amazing for advice don’t know I would have coped the last 3 years since having lupus with out all of you lot 🙂

2 likes
Reply

I've only been here since October and honestly it's been a lifesaver.

My first flare earlier this month would have been a lot more scary if I hadn't had the support and knowledge I wasn't alone thanks to this place :)

1 like
Reply

I must say this place has seen my high and lows since being diagnosed at 15 ! I love how everyone actually cares and understands 👌🏼

3 likes
Reply

My wife who was just diagnosed with Lupus has twitchy / restless legs most notable at night.

In her case Gaberpentin seems to settle things down.

1 like
Reply

Hi loulamb

Sorry to read about your restless legs!. I don't suffer with it myself but do know that it can be caused by magnesium deficiency!. You might like to try a supplement but get the OK with your other drugs first from a pharmacist!. Thinking about it they might be good to ask about restless legs than your GP. You certainly don't want to hear it's your illness every time!. It can feel very dismissive can't it?. Good luckX

1 like
Reply

Thanks x

1 like
Reply

Yes I do and it's awful. I get it more when I'm iron deficient.

1 like
Reply

Restless legs can really be depressing as it can impact your sleep. I've had it for years with it getting worse in the last year or so. My rheumatologist prescribed gaberpentine but I really didn't want to take any more drugs than I do all ready. However I have now got it under control mostly. Weathervane mentioned her sister who goes for a walk before bed & I can say it really works! Sitting still too long seems to set it off with me. I discovered this on holiday as we were walking back from restaurants and busy in the evenings. Before bed, I take a torch & walk around the garden as we live in a rural road & the garden is quite big. It really is quite magical sometimes too listening to the owls etc & watching the stars! Hope you find some relief

2 likes
Reply

Thanks

Reply

Low iron levels can cause it.

1 like
Reply

Hey Lou,

When I went to see the sleep specialist the other day about my poor sleep, half of the questions he asked related to restless legs - it's one of those symptoms that sleep physicians specialise in. Even though I don't have that problem at all (yet!). So if it is troubling you, it might well be worth asking your GP or rheumy for a referral to your local sleep clinic x

1 like
Reply

Thank you x

Reply

This is something I’ve struggled with the past few years. Mine always seemed worse on days that I exercised. My dr tried me on several meds, but I never liked the hungover feeling they left me with the next morning (even if they worked). Once I decided to change my diet and go gluten free, I’ve barely experienced restless legs at all.

1 like
Reply

Oh ok thank you . I’m going to monitor it and see how many times I get . This week I’ve had it 2 nights . I haven’t been doing a lot of moving just laying and sitting down . So I’m gonna see if carries on after I go back to work

Reply

Hi,

I get pains in my legs when I lie down at night tried pillows etc. What does help if I lie on my back with my knees up.Ive also been prescribed pregabalin for the nerve pain which does help.

This makes my legs restless but I think it is different From what you are experiencing.

1 like
Reply

Oh ok . I normally have pillows at my feet . I recently took them away so I could see my tv 😐.

I don’t see why that would bring the restless legs on . I’m going to see what it’s like once I go back to work it just could be due to lack of movement

Reply

I have wear and tear but often quite severly painful arthritis in the sacroiliac low back area and coccyx area too. When it is bad the restless legs become much worse. I get ultrasound treatment every month for the lower back from Physio and the restless legs magically improve.

I think with me the low back arthritis is triggering the restless legs that is why lying with a pillow under your knees would be better as it takes the pressure off the low lumbar area. A pillow at your feet would maybe increase pressure on lower back nerves and also make the legs worse.

No doubt the restless legs can have many causes. I also had it badly as a little child after the age of five when my back was fine then. I used to get up and run around the bedroom in the dark till I could crawl back into bed and sleep.

I hope you find something to help, it is quite miserable. XX

1 like
Reply

Also a good idea to try the magnesium. I buy it in spray form so it wont upset the stomach or interfere with medication in those small doses. We are often quite low in magnesium.

Another thing I have tried and is effective is knee high compression stockings but footless ones so you can wear ordinary socks with them.

1 like
Reply

This sounds a little weird, but the best advice I've ever gotten is to drink 2-3 ounces of tonic water at bedtime, as needed. Stopped my restless legs every time. Be aware some people can be sensitive to the quinine in tonic water. So, as with everything, be mindful of how you react to it.

1 like
Reply

I suffer with it and have been on ropinirole for a few years but lately mine have gotten so bad I’m sleeping on the sofa with cushions galore stacked under my legs, just so hubby can get his sleep. I’m trying to get a gp appt so I can review my meds as I do t think the6 are working anymore xx

1 like
Reply

Oh you poor thing, this restless leg thing is so annoying, my legs “bubble” as well as jiggle about, I find they do it if I have not been very active and I get my husband to massage my legs for a while, which seems to help a bit. I’ve never mentioned it to my Gp as I’ve heard there is nothing to be done about it, but it might be worth you popping to see your GP, you never know. My biggest problem at the moment is the skin on my hands peeling off, I’m having to wear Surgeon type gloves when I bake or prepare food, no amount of hand cream makes any difference, anyone else have this problem? Best of luck LouLamb, Happy New Year to all.

1 like
Reply

I’m going to see if they go after I go back to work on Wednesday because I’ll be more active . At the moment I’ve been laying In bed most of the time .

I have dry skin not on my hands really . I get it a lot of my face . I hate it especially on my eyebrows . I got given cream from the GP

Reply

Yes I have that drives me crazy, toss and turn sit up stand up, nothing works, then my arms seem to do the same ,a nightmare that bedtime is awful. Sorry can't find a solution.

1 like
Reply

You may also like...