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!

Hi OP

I’m sorry your mum is in hospice care and understand why you want to solve this for her.

The only thing I know of is a magnesium supplement. I take one intermittently and it does seem to help. Or you can get a spray to rub onto legs like the Horbaach one (Amazon).

Hope this helps.

Oh I'm so sorry to hear this your poor, poor mum.
I know you'd have to probably clear this with the medics but I had restless legs for years and completely cured them with supplements of magnesium and potassium.
And when I've discussed this elsewhere it does seem that there's evidence that this works for quite a lot of people. I'd never claim it's some kind of miracle cure but I would hope it's worth trying.
I'll post links to the supplements I buy, I get them from Amazon.

https://www.amazon.co.uk/Lindens-Magnesium-Contributes-Metabolism-Reduction/dp/B00KE5BIV6/ref=mp_s_a_1_2?crid=Q98PGREZ86V9&dib=eyJ2IjoiMSJ9.UEBtp6evuyaA-NXLVWzc-dTamVyiTljjMaaNmwB-KPTtZwbYguqd9QWYnv_xUTBZpmUdtGpldSgonO4IbMaikBQSp56muny9shySFxonVL1TeYruIUK5g8KFnd1YZIi3R6A1tEorqAPhILACDf0oFM_4QVJPvlXDIj08YSk-v9mp1PH6ituz6pyGW7eg6Q5jdA5L4_X2KXC4AoSXpInlIg.HAFfzmcYM6gQCGiA3XFx7zE2cULKQ1FwQRMd-xnQO_0&dib_tag=se&keywords=lindens+magnesium&qid=1740159589&sprefix=linde%2Caps%2C848&sr=8-2

https://www.amazon.co.uk/Lindens-Potassium-Contributing-Pressure-Function/dp/B00IAPC1Q8?ref_=ast_sto_dp&th=1&psc=1

Sorry massive links! I take 2 of each every evening after dinner and have done for years. Maybe start with one of each.
Side effect - bowels will stay regular!
Gosh I really hope this works, I feel for her - and you - so much.

I suffer with restless legs that are only resolved by movement. I haven't tried it but can you get some kind of vibration/massage pad that would move her feet enough to calm it?

Hi OP. I am so sorry you are all struggling right now. I saw a reel the other day where someone tied a sock quite firmly around each foot (under the arch and tied on top) and it was meant to relieve restless legs. Obviously not too tight if your poor mum is frail, but maybe worth a try.

Iron tablets if not contraindicated? My GP advised this once.

I’ve had restless legs for many years. Two weeks isn’t long to try medication so I suggest this is reviewed. Ropinirole is very effective but it will take a while to find the right dosage. Meanwhile a massage gun will help a lot, though it needs a carer to use it. However a vibration plate can be used with minimal assistance.

Until an effective remedy is found your mother might be helped with an appropriate sleeping medication.

This is a horrible disease so insist it’s taken seriously and an effective treatment found.

Oh your poor mum. I find magnesium spray works well.

I take magnesium glycinate for this. It doesn’t cause the stomach problems that other forms of magnesium does and helps restless legs and sleep.

I’ve just started to use sweet bee organic magnesium butter instead as I’m having a treatment which has taken me off oral supplementation for a little while. Worth looking at too.

Hi OP, so sorry to hear about your poor mum and it must be extremely hard on you too. Restless leg syndrome can be maddening.

You have probably tried this but magnesium to relax the muscles. And I've also heard people say that when they started taking iron tablets it improved too.

Hope something helps your mum soon. Could you ask your mum's gp about sleeping tablets... I'm not sure they would work given the restless legs but might be worth a try to help her drift off. Thinking of you both, sounds like she's lucky to have a wonderfully caring daughter like you <3 x

Oh I do feel for her

what meds is she allowed? Wouldn't diazepam help?

is she taking anything that might be causing it?

I can't use magnesium
spray as I find it unbearably itchy. pills made no difference. I also have raging insomnia.

some nights I think aspirin has helped and also I think camphor gel has helped. But it's possible that it just coincidence. Hopefully your mum can try those though.

I do hope this can be sorted for her. 💐

I've started gabapentin for pain recently and it seems to have also helped with this.

A weighted blanket! As heavy as she can tolerate. I have horrible restless legs but this really really works.

Just a cheap one off Amazon will do and fold it and just put over her lower legs. Amazing

Thanks all so much for your replies and helpful comments/tips. I’m sorry I don’t have time to reply to you individually but want you to know all of your replies are very much appreciated, and there’s lots of things here to try, and to ask the docs about!

I have actually tried to work out why the weighted blanket works and for me I think it just provides a different sensation or feeling in my legs. I like the feeling of having something heavy on me ( I sometimes pull it over me and it's very relaxing) and if I just think of that feeling, then the restless leg feeling goes. If that doesn't sound completely bonkers

Before I used to pace the floor and I've known it reduce me to tears of frustration.

Really hope your mum finds something to make her more comfortable x

Was going to say this, I struggle with low iron and it causes awful restless legs.

I hope your Mum feels more comfortable soon OP.

My mum got prescribed Pramiprexole. It’s a medicine for Parkinson’s that also works on restless leg syndrome. It’s not a miracle cure - she still has bad nights but it does seem to helped quite a bit.

hi OP that's awful - your poor mum. magnesium and prescription 200mg dose iron tablets fixed it for me (anemea)

Magnesium supplements (glycinate doesn’t work for me but magnesium citrate helps) and magnesium spray. I was sceptical about the spray but it’s even better than supplements. Your poor mum! I have actually thought this through and dread being in a situation where I couldn’t move or apply magnesium, if I ended up in a care home etc

I see someone already mentioned it but came on to say Sweet Bee magnesium butter on the soles of the feet and lower legs or Better You magnesium spray.

Get iron levels checked too.

Hope she gets some relief x

I wouldn't put a weighted blanket on a frail person

she won't be able to move it and it might bruise her

my little mummy needs a lot of covering to keep warm and we even have to be careful of that weight with duvets

sorry to say OP but found some docs a bit - unfocused on practicality, shall we say, when my father was in palliative care so if I'd asked a question like this, they might have said to try it without thinking of practicalities.

I saw that and was going to suggest it too.

So sorry your Mum is going through this OP. 😞

My nan suffered terribly and so do I. I swear by a bar of soap under my feet in bed. Cheap soap put under the sheet. It settles mine after a few minutes. Worth a try !

Yes to the soap BUT has to be ivory soap. Try some bars of imperial leather just tucked into the sheet or at the bottom of the bed

Better You magnesium spray plus Bare Nutrition magnesium capsules

@EmeraldRoulette I think if you risk assessed a frail elderly terminally ill lady unable to mobilise independently using a weighted blanket to get some relief from the torture that is restless legs, you'd use it.

A weighted blanket isn't going to in her to the bed.