Another night of no sleep

[Littlelegz]

Iv just been reading loads of posts about sleep hygiene I don’t understand what that means but my RLS is off the scale every single night atm and in the day time if I try to relax I don’t think what ever I do before bed would change what’s going on atm I’m totally at the end of my tether with it I just can’t bear it anymore and people just don’t get it when I say restless legs they sort of smile or laugh they have no idea what I’m going through I wound wish it on my worst enemy

[Madlegs1]

What medications are you on? What dose and for how long?

Do you keep a food diary?

Have you had your serum ferritin level checked?

What ,in particular, seems to set off the rls?

Let us know more, and we may be able to help you.

[Hidden]

Hi, as Madleg says you could do with a review of your treatment plan.

Also don't be too dismissive of the badly named sleep hygiene before you find out more.

I'll let you know more later.

Just passing abmoment while waiting to have my haircut!

[Hidden]

Sleep hygiene includes many things not just what you do before going to bed.

Part of it could be considering anything that might prevent you sleeping. In your case that will mainly be your RLS symptoms.

In some cases, RLS can be very severe or "refractory", ( i.e. not responsive to first line treatments), but it appears when your RLS is going through a bad patch then it's worth looking at your treatment plan.

You don't mention any medication, so if you haven't been prescribed any, your first step could be to see a doctor and have something prescribed.

If you're already taking medication, perhaps it's stopped working. Certainly, if you're taking a dopamine agonist, then it's known that these drugs can stop working and may even make RLS worse.

It may also be that your stored iron level is low and this can affect RLS. A ferritin test will indicate if this is the case.

Apart from your treatment there may be other factors affecting your RLS, e.g. other medications you may be taking or even things in your diet such as refined sugar, caffeine or alcohol.

Realistically, sleep hygiene is not going to totally eradicate your insomnia, but it can help to some extent and is worth considering.

Here is a bullet point list of things known to aid sleep

- good idea to go to bed and get up at the same time

- the bedroom should be comfortably warm but not overwarm

- the bedroom should be dark

- being in bed should be for two reasons only, sleep and.intimacy, no reading, eating, watching TV i.e. nothing else.

Also

Anxiety is a sleep killer and can make RLS symptoms worse. If you're anxious about not sleeping this will further reduce the chances of sleeping

The 15 minute rule (or 20 mins). If you don't fall asleep within 15 minutes of going to bed, then get up. Do something, then go back and try again. If you fail again in 15 miniutes, get up again. It is possible that you may end up being up all night it's true. However this is still better than lying in bed struggling to sleep, this can condition you into a kind of phobia "bed dread" which will drive up.your anxiety levels

One of the most significant sleep hygiene things for me is exposure to light. Our circadian rhythms, hence sleep patterns are regulated by light. There is a well known physiological mechanism for this. Daily exposure to natural daylight during the day (around midday) can have an impact on sleep. In tandem with this, excessive light should be avoided in the evening.

Full spectrum or white light with significant blue in it is most powerful. Exposure to it during the day and avoiding it in the evening. It's not easy to get this at this time of year. Nights are long and days dark. However, it is possible to get daylight lamps (SADS lamps).

We also expose ourselves to too much light in the evening. Using backlit screens in the evening should be avoided, i.e..watching TV or using a PC, tablet or smartphone.

Sleep hygiene isn't going to cure insomnia, but it can help reduce it

[Topmong1]

It annoys me so much that people who don’t suffer really don’t and don’t want to understand. It’s horrendous....

[bellalurcher in reply to Topmong1]

I know what you mean. I’m sick of people saying ‘why don’t you just go and put your feet up and try to get some sleep’. If only it was that easy. At the minute I can’t even sit down for more than a few minutes. I spend most of my time leaning up against the kitchen units.

Then you get those people who say ‘ ah restless legs syndrome I get that, I had to get up the other night and was up for ten minutes’

You just want to scream at them ‘you have no idea what it’s like!’

Sorry, I’m ranting on aren’t I? I’m a bit bitter and twisted and feeling sorry for myself.

Rant over 🤪

[Topmong1 in reply to bellalurcher]

I also have RMD.... when I try and describe it and what it’s done to my life and relationships people think I’m potty. Well it’s 04-02am here and legs are having a party!!! Misses is fast asleep, wish I could do that sleep thing

[mickeyrose]

I feel your pain, my sleep deprivation is now making me ill, sometimes in the night I feel so helpless begging my legs to shut up! Mine feels like small electric shocks that jolt me awake, I have to pace around for half an hour to make it stop. Then I tumble back into bed in a stupor only for it to start again in 15 minutes, the whole night long.