Restless legs and nagging pain

[WhisperWard]

Hi all,

I have MSA and I suffer quite badly with RLS. Recently though, I’ve started to get awful pain along with the muscle spasms in my legs and feet. Additionally, the spasms now can shoot from my feet, right up my legs and into my hips. It’s almost like it’s happening in slow motion. But then the shooting pains can happen very quickly as well. Quite odd.

I’m also finding that I’m getting lots of pain in my feet upon standing up. It is now taking me several attempts to even get to my feet, and when I do, the pain is awful. It hurts mostly whilst transferring from one foot to the other. I cannot walk without a stick now as I would definitely fall down with this additional pain, because it affects my balance, as it’s hard to take the weight when you know it’s going to hurt so much.

Any ideas?

Many thanks.

[LoveMyGod]

I take ropinerole for RLS, do you take anything? Not sure if that med would help pain too. So sorry for your suffering. ❤️

[WhisperWard in reply to LoveMyGod]

I spoke to a community Parkinson’s nurse yesterday who advised me to increase my clonazepam dose at night. I was initially taking half a tablet at night for REM Sleep Disorder. This got increased to one tablet a few weeks ago. So I took two last night for the first time. I definitely slept much better and my legs weren’t to bother. However, the pain is still . X.

[LoveMyGod in reply to WhisperWard]

What are your symptoms for REM sleep disorder? So glad you slept better. ❤️

[WhisperWard in reply to LoveMyGod]

My symptoms are pretty typical. Lots of shouting out in my sleep. I can lash out with my hands as if I’m fighting something off. I kick out a lot also. I act out dreams. Since taking the clonazepam, my dreams have become milder and I don’t remember them in the same way.

I will say today, after having had two clonazepam last night, I have slept on and off all day. This has made my legs feel better, but I’m not sure I want to resort to these measures just for my legs to feel better. I don’t want to be permanently asleep. xx

[LoveMyGod]

It’s a catch 22, hope you find some relief. ❤️

[sittingontheprom]

My wife started with MSA in 2017 , one of her biggest problems was restless legs etc . Just by chance I had a discussion with two nurses, one a Parkinsons nurse and the other an MSA nurse. They had been been trialling medication with sufferers - their best results were a combination of Zapain 30mg/500mg and Mirtazapine. Quite quickly the problem stopped - Heaven!! Hope it works for you.