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