My Restless legs/feet have worn a hole right through my bedsheet!

[shivermytimbers]

We had a bit of warm weather the other day and I went to wash my beautiful expensive Egyption cotton sheets after the travails of winter only to discover a bloody great hole in the undersheet. A good thing I didn't go through the electric blanket! Mind you, that'd have sorted the RLS.

I was fed up of Egyptian cotton, anyway, thinking it might be exacerbating my RLS. I reckon I need something rougher. Tried a towel one evening but it got bunched up too quickly n the experiment collapsed.

Anybody else experimented with different materials? I've tried socks in bed but I end up attacking them in a rage about 4am and hurling them across the room.

I move so much in bed during the night I'm now thinking of attaching myself to some sort of human powered electricity generating machine to supply free electricity to the neighbourhood.

[ChrisColumbus]

I now wear socks in bed during the winter - against cramps rather than RLS - and occasionally have to eject them (socks rather than feet) if I overheat.

When I was still suffering from RLS symptoms I found that I needed to stay cool in bed, getting too warm would set me off: luckily I don't have to worry about that now.

I see that you are/were holding off adding or changing meds pending a kidney transplant: is that still scheduled?

I never took meds for RLS, and found that avoiding triggering medications, see RLS-UK list -

rls-uk.org/medications-avoid

- and making some small dietary changes stopped the symptoms:

Cutting out 'diet' drinks and foods - the artificial sweeteners, particularly aspartame, were triggers. Sucralose, saccharin etc were lesser triggers; Stevia seemed relatively safe.

Reducing but not totally eliminating sugary foods and drinks, particularly in evenings

Reducing but not eliminating caffeine, particularly in evenings

[shivermytimbers in reply to ChrisColumbus]

Glad you don't have RLS anymore, Chris.

I need cool bed as well.

Transplant still scheduled. Postponed for several months. Shortage of surgeons or theatre time or something. There's more to a transplant than merely bringing a donor kidney with one.

I'm looking at your suggested lifestyle changes.

Cheers Chris.

[ChrisColumbus in reply to shivermytimbers]

Shame about the delay on the transplant: research has shown that RLS is two to three times more common in patients with Chronic Kidney Disease compared to the general population, and Jools has quoted an example of a friend whose RLS went away after a transplant.

I can understand your caution not to change meds while awaiting treatment, and doctors will almost certainly want you to stay on the statin. While I was never on amlodipine I was on perindopril and atorvastatin (later rosuvastatin) and had awful RLS (and a persistent cough from the perindopril) *whatever* other measures I took. It was only after switching to losartan and ezetimibe that I found that by changing diet I could eliminate RLS symptoms. (Having said that, I had to drop the ezetimibe because of bowel problems linked to damage caused by radiotherapy).

Best wishes.

[shivermytimbers in reply to ChrisColumbus]

Thanks Chris. Very interesting.

[Joolsg]

Welcome to the forum.I see from your bio that you have chronic kidney disease & are awaiting a transplant.

Wishing you the best of luck.

My close friend had severe RLS but it completely disappeared after her kidney transplant.

Have they prescribed any meds to relieve RLS?

Raising serum ferritin above 200ųg might help.

The kidney team will know all about safe treatments to take with kidney disease.

[shivermytimbers in reply to Joolsg]

Thanks Jools

Yep, hoping RLS goes away after transplant.

I was on 25, later 50, Pregabilin. Terrible side effects. Housebound, dizzy. Cognitive impairment. Needed stick to walk. Had to give it up just as it started working. Nothing else.

Had iron IV for anaemia a month ago. My Ferritin shot up to around 900. Improvement in RLS. Ferritin now around 500 but RLS has come back. Very bad night last night.

[SueJohnson in reply to shivermytimbers]

Your ferritin shot up to 900 because you tested too soon so got a false reading. You need to wait 8 weeks before testing.

[shivermytimbers in reply to SueJohnson]

Thanks Sue

[SueJohnson]

🤣🤣My laugh for the day "attaching myself to some sort of human powered electricity generating machine to supply free electricity to the neighbourhood."🤣🤣🤣

[shivermytimbers in reply to SueJohnson]

Available on Amazon 😀

God forbid I'd let slip the opportunity to send a few quid the way of the richest man in the world!

[Bowie4eva in reply to shivermytimbers]

Oh SMT, Sue is right, with that SOH, you will go far!!! Thank you for helping me start a day exhausted -but with good cheer!!!

[shivermytimbers in reply to Bowie4eva]

Thnks Bowie. New motto: exhausted - but with good cheer"

[SueJohnson in reply to shivermytimbers]

Actually Elon Musk is the richest by far. Jeff Bezos is only the 3rd richest.

[shivermytimbers in reply to SueJohnson]

Only 3rd richest? Can't have that. C'mon guys. Get out yer wallets. Buy stuff.

[SueJohnson in reply to shivermytimbers]

$351 billion versus $236 billion.

[shivermytimbers in reply to SueJohnson]

If they stored their money under the mattress their beds would be 3 miles up in the air.

Seriously, a system that allows such wealth to be accrued by single individuals needs some serious attention.

But, no doubt we can rely on the politicians to restore that wealth to those it rightfully belongs to. Us.

Any day now.

[SueJohnson in reply to shivermytimbers]

Are you trying to get me to laugh again? Especially the part about Zelensky which you deleted.

[shivermytimbers in reply to SueJohnson]

How did you get to see that Zelensky joke after I deleted it? That's a clever trick.

[SueJohnson in reply to shivermytimbers]

when you reply and I get a notification the first part of the reply is included. You edited it to delete it but I don't get that version.

[shivermytimbers in reply to SueJohnson]

Interesting.

[SueJohnson in reply to shivermytimbers]

And my laugh for today - available on Amazon! 🤣🤣🤣

[shivermytimbers in reply to SueJohnson]

Two laughs in one day? You'll do yourself an injury, Sue 😀

[ziggypiggy]

Yes. I have to put a towel down at the end of the bed or i will go through sheets like crazy. Even when my RLS is controlled my feet are constantly moving. It just feels better when they are. I really can't control it unless I specifically force myself not to. But that goes away the instant i lose focus.

[shivermytimbers in reply to ziggypiggy]

I need to get a bigger towel.

I used to think I could control my RLS with sheer will power. Not a chance.

I've been using Autogenic training. I'm now beginning to wonder if it doesn't actually make the RLS worse. That's what somebody on the internet thought.

Thanks Ziggy

[ziggypiggy in reply to shivermytimbers]

Yeah. The towel doesn't always stay put. Mostly I have the top sheet and quilt loose at the bottom so i can lift my feet up and trap some of the top layers underneath them so they are between bottom sheet and my feet. . This seems to work well as it's never the same area much.

[shivermytimbers in reply to ziggypiggy]

thanks Ziggy. I'll be doing some experimenting.

[shivermytimbers in reply to shivermytimbers]

I'm going to start by cutting my toe nails!

Long, sharp toenails and restless legs is surely a lethal combination.

[SueJohnson in reply to shivermytimbers]

You're making me laugh again!

[Fishhag]

good morning SMT, in a blog full of pain and suffering you have definitely added some humor. ❤️

[shivermytimbers]

Amazing how we have the ability to smile through it all 😀

[TajarTales]

I've worn out many sheets since developing RLS. I turn them 180 degrees every time I wash them, so at least they last awhile longer.

[shivermytimbers in reply to TajarTales]

Thanks Tajar. I shall be doing some rotating.