CALL ME STUPID: I've posted I once... - Restless Legs Syn...

Restless Legs Syndrome

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CALL ME STUPID

Mememe1962 profile image
18 Replies

I've posted I once suffered RLS so know your pain . I've had a really stupid idea , RLS mostly gives most grief at night --- I had a freind that re climates end type thing his pet hamster to sleeping at night and playing in the day , could it HELP if you change your active part of the day to night and the resting period to day , would that make things more bare able ??? I found when I had to move and exercise at night because of RLS its eased the pain side of things , so if your normal active period was at night maybe it would help a great deal, or not . Just thinking aloud .

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Mememe1962 profile image
Mememe1962
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18 Replies
Leelee49 profile image
Leelee49

Hi, I can see where you are coming from, but, some of us have to work so it wouldn’t be feasible. But I suppose those who don’t, it’s worth a try.

Cantstopwontstop profile image
Cantstopwontstop

It’s been a few years but I never got much RLS at Burning Man. That is one week of sleeping in the day and playing at night.

I think this is a suggestion on the Johns Hopkins site - to take a night job. Maybe by Dr Earley. It’s not an attractive option ...

I used to work nights, nights spent pacing and giggling my legs. Didn't work :(

Sorry, refuse to do that (call you stupid).😀

I've wondered that too though have a feeling that our bodies can't readjust our biochemical rhythms to that extent as they're driven by light etc.

But I myself can sleep 1st thing in the morning when I've had an awful night which is most nights. Of course that doesn't work if you have to work etc and needs the rest of the household to leave you in peace till 9 or 10.

But it makes the world of a difference to the rest of the day being able to drift off naturally from 6 or even 7.30am, depending on when the last restless spell was, and being able to then wake up naturally after a couple of hours.

I believe in sleeping IF you can when you can after a bad night, not good if you have to work. I dont listen to what some websites say, to NOT nap in the day, they are wrong when it comes to having RLS.

in reply to

Absolutely! The sleep specialists who advocate no sleep during the day should be talking about everything else except RLS. In RLS there isn't primary insomnia. In my experience you simply suffer from lack of sufficient sleep hours and being woken by the stupid movements and odd sensation when a sleep cycle hasn't finished. getting a wee catch up during the day time makes all the difference in being able to function. On the days I can't manage that I sleep no better at night.

Eryl profile image
Eryl

It's nothing to do with the time of day, it's behaviour. By shifting your behaviour, you will just shift the problem. The reason you don't have it during the day is because you've spent a night sleeping just before it and not taking part in behaviours like eating food triggers that cause it.

LotteM profile image
LotteM in reply toEryl

I am sorry, Eryl. But that is your personal hypothesis, which doesn’t accord with all the available knowledge. It has been known for quite a long time that all/most substances and activities in our bodies vary according to a circadian (=about daily, =about 24h) rhythm. And neurotransmitters are an important group among these ‘substances’.

From my personal experience, whether I eat or not, even wen I eat sugarloaded things in the evenings or at night, I do get RLS at night. Tried and tested. I do agree with you in so far as that eating activates digestion and all ‘substances’ involved (enzymes, hormones, neutransmitters and whatever more). And this digestive process affects other hormone/neurotransmitter mediated or regilated processes. As all processes in our body are in a way, directly and more often indirectly, connected.

Eryl profile image
Eryl in reply toLotteM

Well, my hypothesis has worked for me. There may be many causes, but I've found mine.

in reply toLotteM

I agree. I'm pretty certain RLS is due to some circadian rhythm. I'm not sure if we know which yet. I understand iron levels alter during the 24 hrs for a start. I've often thought that changing sleep from night to day won't work for that reason, though a small shift to the early am seems to work but that doesn't take account of light etc

Mememe1962 profile image
Mememe1962 in reply toEryl

If you don't have it in the day because you've spent the night sleeping then your RLS is not so bad

Eryl profile image
Eryl in reply toMememe1962

I don't have it at any time except when I eat my trigger foods.

Mona23 profile image
Mona23 in reply toEryl

Eryl, then I wonder if you have true RLS, diagnosed by a neurologist, or allergies to certain foods that trigger simiar symptoms? True RLS is still thought to be a neurological, dopaminergic issue, so most foods would have no impact on that system. At least, not in the amounts of normal consuption. Caffeine and alcohol can be a problem, and sugar if a lot of it. Whatever the cause, I’m delighted for you that your symptoms are relieved most of the time. Cutting out sugar, caffeine, etc, has done nothing to help my RLS. I’m still trying to understand all the complexities of RLS - including the differences between symptoms caused by the dopamine issue, and secondary issues that may aggravate the symptoms but not cause the RLS (like venous insufficiency).

Eryl profile image
Eryl in reply toMona23

Does it matter whether it's 'true rls' or rls like symptoms? all I know that the diet works for me and some others. It won't do any harm to try it, but it must be followed rigorously, and would do a lot of people some good, even if it doesn't eliminate their rls, and not cost them anything, so what is there to lose?

I drink a half litre of fresh coffee and sometimes three cups of instant coffee as well, daily, and am still rls free. The only thing that has triggered it recently was bread spread with margarine containing E202 and a curry made with a sauce containing E202. When you've been rls free for months it comes as a real pain. This week, because of social events, I've drunk two or three pints of beer on three occasions and haven't suffered any rls. It probably wouldn't be the same in the first few weeks of following my diet, but by now my body seems to be able to handle the extra carbs. I probably won't touch alcohol for weeks after this.

Mona23 profile image
Mona23 in reply toEryl

No, it doesn’t matter in the long run. Your relief from symptoms is wonderful, and I meant no disrespect. I try to encourage the distinction between having RLS, and having RLS-like symptoms. Both are debilitating but the more we distinguish between them, the better an understanding of RLS we’ll have.

TEAH35 profile image
TEAH35

Dear Mememe1962

No I wont call you stupid because I agree with you wholeheartedly. If I could work I would work night shift, and sleep all day. I feel that would be a perfect arrangement for restless legs sufferers.

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