Restless limbs when trying to sleep

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Downhillwego

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Apr 10, 2020
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Learn about ALS
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Country
UK
State
UK
City
Warwick
Thanks for having me.

Im not diagnosed with any form of MND, I'm going through the diagnosis process but it's very slow going and I've been going through the motions for over a year and now it's all slowed down even further due to covid 19 meaning the NHS is no longer doing routine testing such as EMG And nerve conduction, I have tried to go private and pay for this but even the private hospitals are not doing routine stuff right now.

Anyway I won't bore you with my symptoms, I just want to know what people do about restless arms and legs when you are trying to sleep, I'm really struggling with this, I also get the rls feelings during the day but at night it's 100x more intense.
I can drop off to sleep but keep waking, sometimes I wake and my arms are above my head so I'm obviously trying to get rid of the feeling even when I'm asleep.

My doctor gave me some quinine but it's certainly not helping with the restless limbs.

Anyone have any ideas that I can fire over to my gp?

Thanks for your time and help in advance.
 
If you have true rls there are meds for that that your gp must know. For non prescription relief try magnesium
 
If you have true rls there are meds for that that your gp must know. For non prescription relief try magnesium

Hi,
thanks for the reply, I will have to try harder to get an appointment with my GP although it's not that easy in the current climate.

I did initially try magnesium when my symptoms first appeared but didn't find it was very helpful, my levels have recently been tested and are up in the top third of the range naturally through diet so I'm not sure that adding more would benefit but anything is worth a try at the moment.

Thanks
 
Quinine is not a benign substance, so if it's not helping, I wouldn't use it. Iron, B vitamins, not a lot, just ensuring you are meeting daily needs, a few drops of magnesium lotion are options to try. Drinking something non-alcoholic before bed can also help.

As Nikki says, If you have true RLS/PLMD, they should have offered you an appropriate prescription medication, which could be done electronically, it would seem.
 
I've had RLS for about 40 years and never thought it could be ALS. Lots of exercise and leg/hip stretching solves it for me.
 
Quinine is not a benign substance, so if it's not helping, I wouldn't use it. Iron, B vitamins, not a lot, just ensuring you are meeting daily needs, a few drops of magnesium lotion are options to try. Drinking something non-alcoholic before bed can also help.

As Nikki says, If you have true RLS/PLMD, they should have offered you an appropriate prescription medication, which could be done electronically, it would seem.

Thanks for the reply,

I need to go back to my doctor and have a chat with her about this. I have not spoke with her for around 6 months as she took an offence to my self medication for my thyroid problem with natural dessicated porcine thyroid, and as I'm under a neurologist I didn't see the point in troubling my GP with any symptoms.

Funnily enough I've not had an alcoholic drink for 20 Years.

Thanks for your time.
 
I've had RLS for about 40 years and never thought it could be ALS. Lots of exercise and leg/hip stretching solves it for me.

Its really good to hear that you can control it with stretching and exercise affected.

Its been driving me crazy for a few weeks now, not just at night either.
 
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