Restless legs feeling

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CamilleQ

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PALS
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06/2020
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CH
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VD
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Lausanne
Hi everybody,

As I know people here have a lot of experience and are very knowlegeable. I m going to share my problem.

For the past few days, I have felt my legs having an irrepressible desire to move. It bothers me especially at night to sleep.
I am still able to move my whole body and I can turn around in bed.

I feel an irrepressible urge to move, I feel like the skin burning, itching. I can't stand pajamas or blankets.
It is not painful like cramps or spasticity. I think it's a bit like restless leg syndrom (RLS)
I feel my sleep is restless and my mom also told me that I move around a lot at night for a few times.

I succeeded in improving the cramps and the stiffnesses well with CBD, magnesium, turmeric, ...

Since the beginning sleep is a problem for me and I have tried several things to sleep (tradozone, lorazepam 2mg)

I am now taking Mirtazapine 15mg and lorazepam 1mg, melatonin 2mg

I wonder if it might be because of mirtazapine (RLS is a side effect of this one)

Can this be a real RLS or is it because of the ALS?

Are RLS drugs contraindicated with ALS?

Do you have a similar experience? What are you doing against this?

Thank's for sharing your experience and for your answers
 

KimT

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You need to give Mirtazapine several months to get used to the side effects. It helped a great deal with sleep. I've been on it since 2003. I never had the restless leg thing until ALS. Now my legs "feel" funny in bed. Some of it is fasciculations but the rest is other sensations that make me have to move my legs. One of my neuromuscular doctors thinks my nerve roots are irritated (confirmed by MRI) and that is what's causing the sensation. I upped my dose of CBD to 100 mg. a night and massage my legs. Those two measures seem to help.
 

CamilleQ

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06/2020
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@KimT Thank's for the answer I m gonna check with my Dr. I take CBD 100mg morning and midday and 150mg at night. The nerve roots problem is a part of ALS or it's an other things? I read it can happen in ALS but it's not a current things. As I m young and "healthy" (never had any kind of health problem before) I put all this things on ALS.
 

Dunric

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Jun 5, 2020
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07/1998
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I can relate to the RLS issue and was prescribed Requip and later, gabapentin for it by my neurologist. Interestingly, it took years to surface after my Dx. The gabapentin does give me some vision issues though as one of its side effects.

I can’t recall all the meds (long time care home resident and they take care of my cocktails) I have but am for sure that I haven’t taken the medication you mentioned.
 

CamilleQ

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Messages
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PALS
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06/2020
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CH
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VD
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Lausanne
@Dunric Thank's for your answer. I m a french speaker so I m not sur I understand well.

You have RLS before ALS or it comes after? Because I never had any issue like this before.

Was Requip effective?

I m gonna speak with my doc and see what he say.

thk's for the answer :)
 

nona

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02/2015
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I have RLS about once a week since ALS. I was very active before diagnosis but never had it. Usually I associate the RLS with anxiety and a little extra lorazepam helps. I have never taken anything specifically for the RLS since I don't have it every night.
 

TippiLeigh

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Jun 13, 2020
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DX UMND/PLS
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07/2020
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XXXX
I have PLS, not ALS, but I had RLS early on when I slept. It was probably not true RLS, but actually a combo of spasms and fasciculations. Since starting Baclofen, that has improved quite a bit, although it’s not completely gone.
 
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