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RLS or not RLS

I would be grateful for a little input. My GP is trying to help with my poor sleep and RLS type symptoms.

At rest, I have the creepy crawly nerve sensations in my legs and like irritating nerve tingles (both legs). It is alleviated with movement. It’s worse in the evening but almost as present during the day. It’s always when I’m still I notice it. For example when driving, if I come to a halt I’ll notice it then (as if when other stimulus stops).

It started about 4 years ago. I noticed while sitting legs out on a sofa my legs weren’t happy being still and felt annoying! Since, it’s developed into the tingles and creepy crawly feelings.

Being relieved with movement it seems to fit RLS but for a couple of things. It’s annoying and upsetting but moving my legs with it isn’t something I’m hugely drawn to do (partly because I know it isn’t going to achieve much-but it isn’t all that pleasant trying to be still). I also find that lying on my front seems to lessen the awareness.

Also, if say I’m sitting, if I let the weight of my legs droop (by just my ankles supported/up) I don’t feel troubled by the sensations.

Lastly, although my sleep feels affected by some sort of Brain/nerve upset, when I go to go to sleep the sensations seem to diminish. I’ll be aware of them again when I lie on my back in bed.

I didn’t give one of the dopamine agonists much of a go. I’m currently upping Pregabalin. I’m at 100mg at present with just a slight improvement.

I’d be pleased to get some input on my symptoms appearing to have some aspect of positionalness (if that’s a word!) because generally it’s like RLS regarding annoying/irritatinh/ upsetting sensations that stop me relaxing. Many thanks

  1. Hi . We have had several members whose symptoms began with a spinal injury or spinal surgery, and others who were suprised to find relief after spinal surgery. So, though we are not medical experts, I wouldn't be surprise to learn that your position does trigger your RLS symptoms. The cause of RLS is still unknown and might even be due to multiple factors. Have you seen a neurologist for your RLS? If not, it might be a wise move. You might learn whether there are contributing factors that can be addressed. Best wishes. - Lori (Team Member)

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