Nhs: I have suffered badly with rls for... - Restless Legs Syn...

Restless Legs Syndrome

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Nhs

Hooc profile image
Hooc
8 Replies

I have suffered badly with rls for two years and posted on the website and grateful for all the help. What I wonder is when one has successfully come off Pramipexole or ropinlole ( not in my case) what does one do to combat rls? Or do you just have to suffer. I haven't had much success with the medical establishment and one go who I complained about wanted to shift the blame on to me she didn't have much knowledge about rls and because of the ridiculous long waiting time to get an appointment with a go she blamed the NHS I told her I was feeling suisidle at times with lack of sleep and I felt abandoned but she said they were doing all the can and with that I have asked to go private can't take any more with the nhs

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Hooc profile image
Hooc
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8 Replies

There are other med options to try which are available for RLS.. Some people find taking low doses of two meds can work better for them. rls-uk.org lists meds available to use.

Madlegs1 profile image
Madlegs1

If you read through posts from the last few months, you will find a plethora of options for controlling or releiving rls.

Meds, diets, avoiding triggers, upping ferritin level cuddly blankets, vibrators (yes, you read that right😁) and so many more. Don't bother with the bar of soap- unless of course you have an unlimited number of virgins born before midnight on last Thursday before spring equinox 😫

Happy reading.

Vegan diet seems to do it for some hardened kriminals.😎

Parminter profile image
Parminter in reply to Madlegs1

I haven't caught up with the virgins. Please do tell.

Regarding the vegan diet, or not, I recently came across an interesting study about the ketogenic diet.

You will know about the hyperglutamatergic state of our odd brains, which renders us sleepless but never sleepy.

In a recent rat study (not virginal, probably), they found that the ketogenic diet lowered glutamate in the brain significantly.

As it is clear to me that I am hyper-g, I am thinking about trying it. Several ducks need to be in a row before I commence.

Virgins, rats, soap and ducks.

At the very least, we're not boring.

DicCarlson profile image
DicCarlson in reply to Parminter

Yes indeed - I too am ready to jump on Keto - research is very clever and interesting. Here's a link to the study. sciencedaily.com/releases/2...

LotteM profile image
LotteM in reply to DicCarlson

Thanks for the link, Dic. Although I think the relationship between the ketogenic diet and the positive effect on seizures had been established already a while ago. Must be, because I either saw a documentary on it on Dutch tv or read about it in the newspaper (can’t remember) a few months ago. Never mind, more rhan interesting enough to post - so thanks to you and Parminter.

DicCarlson profile image
DicCarlson in reply to LotteM

Yes, indeed the link has been well established for years. But this study now explores and identifies the actual mechanism of action. Fascinating use of the sterile mice to identify the mechanism.

Parminter profile image
Parminter in reply to DicCarlson

A pity we can't just swallow the bacteria, or get a faecal transplant. I think most of us are ready to try anything. And if it has no side-effects......... Next time I have an iron infusion I'll ask for a transplant of rat-poo at the same time. That would blow their hair back.

SLMCP profile image
SLMCP

Hi ya - so sorry you have to suffer like this. Has your RLS been diagnosed, ie is it a dopamine problem, circulatory, low iron, lack of salt??? If it is dopamine then ask for other options - keep asking and pushing for help. Get angry if you feel you are being fobbed off. Take care - i hope you find something to help xx

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