Insomnia: Hell fellow rls sufferers. I... - Restless Legs Syn...

Restless Legs Syndrome
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Insomnia

Hoochybaby
Hoochybaby

Hell fellow rls sufferers. I would be interested to hear from others how they get through the nights when the legs jerk and twitch.

Do you just lie there in bed twitching

Do you get up and walk around

Do you have a bath or shower

Do you massage those offending legs

Do you read watch TV

Do you just watch the clock and see the handles never move

Do you listen to talking books

Make another cup of tea

Eat your way through the night

Do you put on your coat and take the dog another walk

In desperation phone the samaritons

Phone a loved one

Resort to a sleeping tablet???????

over the years I've probably done most of these how about you let me know in a serious or lighthearted way please.

7 Replies
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Hi Hoochybaby,

I noticed my jerks/kicking started whenever my legs get warm, I don't even have to wait for them to get hot! If I can't cool them down I get up, go into the living room, lay on the sofa and lift my legs up for at least 3-5 minutes, whenever they go for a time without me getting any sensations, or jerking. This can work for me, but sometimes my legs decide that they want to work out a bit longer. If this occurs I repeat this or try lifting just the leg that's "going mad". Eventually this works, but if legs won't "give in" resort to a cuppa which usually helps me relax and be able to go to bed again.

Sometimes I can get the leg that kicking to calm down just by laying on my front. It doesn't always work but if it does, WEEEEE! Halleluha!

I hope this gives you some ideas.

Lindy14

Seriously, the worse thing you can do on those nights is lie there twitching all night.

The only times I 've really had that degree of twitching.is when I forgot to take the Pramipexole,

so

I can't recall where you're up to with your medications, but it seems like they're not working

or

you forgot to take them.

I get insomnia anyway, even if I have no RLS symptoms. Especially in the winter months with the long nights - I go bi-phasic! Nothing to do with my sexual.orientation :-).

It means I have two sleep periods, not one.

I've found it's better to accept this than struggle with it, so I follow the 15 minute rule, i.e. if I've not fallen asleep inn15 minutes, I give up trying. Actually, you're supposed to get up, but I don't always.

I've also cultivated a more positive view of insomnia, i.e. because I have more time conscious, I have more life AND it gives me extra time to do stuff. Creatively that is. Life is precious and I have lots to do.

Obviously, I can't go crashing about making a noise using machinery etc.

Also not a good idea to do anything too physical,

Not a good idea to expose yourself to too much light, at night, especially blue/white light, so TVs not a good idea

Not a good idea to drink too much, even tea has caffeine in it.

Not a good idea to eat - I recently read that sleep deprivation can increase the chemical that switches on hunger and reduce the chemical that turns it off.

I've found for myself and read that doing something mentally challenging is really helpful, problem solving.

Sometimes I tinker with designing and making simple electronic circuits, sometimes trying to write code to programme a microcontroller. Sometimes it's coming on this site and trying to sort out what problems people are having.

If I'm physically tired, but the brains overactive, puzzles, sudoku, backgammon, Mahjong etc.

Mindfulness meditation does help with accepting my situation and lifts mood, but it's not something that can be done for hours on end and it doesn't necessarily cure insomnia. It is definitely on my menu.

Who knows, perhaps my long winded writings have a soporific effect.

Still awake?

Hoochybaby
Hoochybaby
in reply to Manerva

Thanks Manerva for your usual informative reply to my query I’ve got to a crucial stage with my dependence on pramipexole. I have just about stopped taking the drug an I’m on to gabapentin but struggling badly at night with insomnia and jerking of the legs I’m praying that once the pramipexole is completely out of my system I’ll start to feel better but at the moment it’s a struggle I’m taking zopiclonne 3.75mg at night the only way I can get through

I suffer from insomnia and RLS but I will not take drugs for it. I think I take enough tablets with my underactive thyroid. If I can not sleep Iget up, no point in laying thinking all the time. I watch tv sometimes I fall asleep in the chair. The last two night I have woken a lot later than usualm I have a cold and have been having a drop of whisky in milk. I do not want to make this a habit, but it is nice getting a full nights sleep.

Manerva
Manerva
in reply to Hoochybaby

If you've just completely stopped pramipexole, this is the worse part.

If you've just started the gabapentin, it could take a few weeks to start working, also it depends what dose you're taking.

I hope things improve soon.

Hello Hoochybaby,

If my legs wake me up in the night, which they often do, I get up and go to the loo. If they don't settle down after that, I put on a pair of support stockings, the ones that go to the top of your thigh. For some reason, the change in pressure usually quietens them down and I can go back to sleep.

Change in temperature does the same, but the stockings are less disruptive and time consuming than having a bath in the middle of the night.

If none of that works, which can happen if I've just reduced my pramipexole dose or eaten too much sugar(!!), I get up, go downstairs and look for something to clean. I often make a note of little things that need cleaning the evening before so I know I've got a mid-night lifeline.

It's got to be something inside the house (I'm not going in the shed or garage at 3pm, especially in winter), something that keeps me on my feet for a while, until the legs quieten, and something that doesn't require a hoover, food mixer or drill.

It does mean my house is cleaner than it's ever been (the positive), but the downside is that I'm too tired to concentrate much during the day, especially after lunch. I can't go to the theatre/cinema or read in the afternoon or evening anymore because the rls is too troublesome.

But I can now watch TV. A fellow rls sufferer told me to get one of those large inflatable gym balls. I find that gently rolling back and forth whilst sitting on it shuts the legs up enough to allow me to watch an hour long programme. Sometimes I have to lie across it on my front -which does make telly watching difficult.

Another thing I discovered, quite by accident and not in the middle of the night, is the Pub Landlord. I laughed so much watching an outrageous episode on YouTube that my legs joined me and forgot to be restless.

So, in summary, my go-to props for when the legs are bad are:

support stockings

hot bath (I can imagine cold might also work if you've got too hot)

rolling on a pilates/gym ball

low-impact activity on my feet

unexpected humour.

Happy New Year!

Requip (ropinirole) and compression socks during the day.

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