Unbearable restless leg syndrome

[Pegs11]

Hi, this might be a bit of a long shot… my mum, who is terminally ill with cancer and is now in St Peter’s Hospice, is suffering terribly from restless leg syndrome. She’s had restless legs for 30 years, and has always managed it by getting up and moving around. She can’t do that very easily now, she is very weak and can’t stand up by herself.

Her restless legs have got so much worse as a result. It keeps her up ALL night, every night. She is constantly needing to move around, needing to get in and out of bed and walk around. Or to move from the bed to the chair, and back to the bed. Some nights it’s every five minutes!

She is very weak and frail, so needs at least one person to help her move around. The hospice have very limited night staff though, so they can’t always be on hand for her… and to be honest I think they’re exasperated.

This means mum often has to either just try to tolerate the discomfort - which ends up with her crying and screaming and begging - or she will keep trying to stand up on her own and risk falling (she’s fallen a few times already).

She has been in the hospice for over two weeks now. The doctors say that during that time they have tried everything, medication-wise, to try and control her restless leg syndrome but nothing has worked… or it has worked a bit but has created another symptom that’s just as bad, such as severe and terrifying confusion, so they’ve had to withdraw it.

We have tried a tens machine - that just made it worse. We’ve tried reflexology, foot/leg massage… didn’t work. We’ve tried moving her legs for her, doing some gentle bending and stretching of the legs. Didn’t work.

Me and my siblings are all tearing our hair out over this, we want so badly to be able to help her as it’s horrible seeing her suffer like this. I’ve not had restless leg syndrome myself but I’ve heard it can be absolutely unbearable.

So… I’m open to ANY tips, ANYTHING we can try that might help alleviate mum’s restless legs while she is too weak to properly move around. Anyone…? Thanks in advance!

I came on to say exactly this - magnesium and potassium will sort her out, and fairly speedily. Topical magnesium is brilliant as it is so quickly absorbed, but as others have said, spray can be harsh and cause itchiness, so balm or lotion is so much kinder. "Better You" has a great range - you can buy it in Holland and Barratt and some supermarkets. I hope she get's relief soon. My sister was plagued with this for years, and it actually cured her over-night and it has never returned.
Wishing you all the best. Very distressing for you seeing your Mum like that, at an already difficult time.

Magnesium/iron are great for solving the problem, but they take awhile to work. If it's just instant symptom management she needs I recommend trying paracetamol. That sorts it for me. Obviously you wouldn't want to be taking it all the time normally but if your mum is in a hospice I guess that doesn't matter. The other thing that works for me is those hospital compression socks. Again there are risks with long term use but perhaps worth a try.
Hope you find something.

Ropinerole is the only thing that works for me.

Quinine in tonic water , I drank loads while pregnant
magnesium is the only thing that works
hot bath
exercise and stretching

Thanks again all for all the advice and tips! Going to order the magnesium spray as a starter. Also going to see if I can relax her brain and body and stimulate some dopamine by stroking her hair and playing a sleep hypnosis podcast… worth a try, eh.

She does have low iron but the iron supplements were making her very sick. However, now she’s on anti nausea medication (apparently one that doesn’t cause restless legs, as some of the others do) maybe she can start taking the iron again. I will consult her doctor about this and the other recommended drugs.

Spatone iron supplement (very gentle and easy on the tummy) works for me. Best wishes to you and your mum x

Hi OP, I used to have terrible restless legs and even getting my ferritin over 100 didn't help.

I take magnesium malate in the morning and magnesium glycinate in the evening. But I take 450mg of glycinate which is more than the recommended dose.

Youll need to get any supplements of magnesium from amazon or online, Holland and Barrett don't sell anything effective enough and theirs are full of fillers. Try New Leaf.

And I really hope you manage to settle your mum.

A plain bar of soap under the sheets works for me and my mom. I get restless arms too so also put a bar near my arms.

I have had restless legs at nighttime since my first pregnancy 13 years ago.
If I eat a banana every day it's stops it completely.
I hate bananas and I eat them with my whole face scrunched up. But it works for me.

Magnesium really helps me. I take magnesium glycinate. And also have Epsom salts in the bath. The spray makes my skin sore and itchy.

The other thing that helps a lot if I’m in pain with it is ice packs on my legs. Keeping my legs cool in bed really, really helps. I imagine it’s warm in the hospice so if her legs are warm/hot it’ll make it much worse.

Good luck, I hope you can help her. It is an awful thing.

This might sound bizarre, but the only thing that fixed my restless legs is tying something (like a dressing gown cord or a long sock) around my foot, just below the widest part. Fairly tightly (enough to compress without pain). It's a tip I read on MN. I go from my leg bouncing incessantly to just...having no desire to move it. It was immediate! Very tight slider style slippers also work.

Hope your poor mum finds some relief.

Not sure what that was meant to say

but my thinking is it could be very uncomfortable for her and she'd be unable to move it off herself. I'm not thinking it is risky in any other way. my late father was in pain at the tiniest thing, a weighted blanket just doesn't fit with my experience of frailty anyway

I absolutely wouldn't want to deny anyone relief from this, especially not anyone in this situation!

will look up this thing about tying something round feet for myself.

I’ve taken magnesium glycinate for a couple of years now to try and stop my legs hurting and the need to move them all night long but it hasn’t helped much. The thing that’s made the difference for me is a high dose of ferrous fumerate last thing at night, it worked almost straight away.

Sorry your mum is suffering so much.
old wives tale is bar of soap under mattress.
I personally take two soluble paracetamol works every time.
I have also heard magnesium spray rubbed in to legs .
I hope you find a solution to make your mum more comfortable .

I find elevating my legs help as well as the magnesium I sleep like a banana two pillows for my head two for my feet

This might be worth a try. Can you ask her doctor about prescribing a dopamine agonist?

I will ask the hospice doctors about all of the drugs recommended here, and see which ones they are happy to try, thank you ☺️

(I did try the “tying a sock round the foot” thing, sadly it didn’t work for her.)

Try the bar of soap suggestion tonight. You have nothing to lose!

I had restless legs for years - as did my sister - and this has been resolved for both of us by taking Valerian capsules before bed. Valerian is an anti-spasmodic herb - a good quality brand is best. I'm very sorry to hear what your poor Mum is going through - I don't know whether Valerian would help given her underlying health issues, but it might be worth a try. Valerian tends to build up in your system so can take two or three days to see an improvement.

DH also takes it because he's a very light sleeper and it helps him get to sleep and stay asleep, but it doesn't have that effect on everyone.