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RLS sensation in hands

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Kristina1

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Does this happen to anyone else? I find it very agitating
 

KarenNWendyn

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Hi Kristina. Yes, and it may or may not actually be true RLS.

See my post
https://www.alsforums.com/forum/general-discussion-about-als-mnd/42854-dysesthesias-part-als.html

Restless legs syndrome has been described in association with ALS. Ropinorole (Requip) can be tried for RLS and is also being studied in ALS.

To give a follow up on my post above, I tried Requip for about a week with no benefit. I really didn’t think I had RLS. Over time, I developed a little edema in that foot along with some intermittent warmth and redness suggesting the problem is more likely vascular stasis due to immobility. This can be associated with an uncomfortable sensation.

The solution for me has been to elevate the extremity and massage frequently.

For you, you might try the Ropinorole first. But if it doesn’t help, consider that the problem could be from circulatory stasis, or spasticity.
 

Kristina1

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I just read your linked thread. Not sure Im describing what youre describing though. This really does feel exactly like RLS only in my hands. I get RLS from time to time (not enough to medicate for it). Back when I was pregnant I got RLS constantly until I strted taking lots of Magnesium.

What's happening to me now seems to be brought on by overuse of the failing muscles. My hands are very week and atrophied but I still rely on what muscles remain (especially my 2 middle fingers) for so much. The RLS sensation comes on and I can't use the hands/fingers and the sensation make me shake them out and yell out loud it's awful like ants running back and forth under my skin. It does not feel like when your hand or foot "falls asleep" which seems more like what you were describing.

I tink il ty magnesium and go from there. i have a lot of spasticity everywhere so maybe it is related to that- i get clonus in both hands now when i try to use/hold my hand at a certain angle. my whole body is insane i feel like ill never understand whats happening
 

lgelb

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Kristina, from what you describe, if the magnesium doesn't work (and you could try lotion instead of the tablets), you might then ask about low-dose (starting from 100mg and going up) gabapentin.
 

Kristina1

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I was on gabapentin for a long time (almost 2 years), taking as high as 600/600/900 (morning, middle day, bedtime). Then they switched me to lyrica due to not having a lot of success with gabapentin. now i take 100mg lyrica 3x daily. i dont feel a difference tbh
 

KarenNWendyn

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I was also going to suggest Gabapentin or Lyrica. You could also get a compounding pharmacy to make up a topical cream with Gabapentin, Amitriptyline, Lidocaine, and an anti inflammatory such as Naproxen. Some pharmacies have experience with making up their own cocktail for neuropathy/ neurogenic pain.

There is also topical CBD ointment, but it would be trial and error, just like with the other suggestions.

Then there’s always Ropinirole.

Best of luck with this, whatever you end up doing.

My symptoms may indeed represent a different process, but FWIW, I don’t have the sensation of an extremity “going to sleep”.
 

lgelb

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Since gabapentin (Neurontin) and Lyrica (pregabalin) are cousins -- Lyrica was the defense against Neurontin's patent expiration -- if you don't respond to one, it's unlikely you'd respond to the other.

However, Lyrica is considered a safer drug in terms of potential side effects.

I would try low-dose amitriptyline next (different class of drugs entirely) and if that doesn't work, try a topical cream as Karen suggested. In fact, the OTC creams that are sold for sore muscles, like BioFreeze and capsaicin, would be a low-cost next test if not already tried.

Also, it sounds simple, but I don't know if you tried ice/cold packs 20 min at a time...
 
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KimT

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I use hybrid cannabis cream on my legs and feet and it seems to help. But I've had a lot of sensory symptoms from the beginning, especially pain and even tingling. I can't function on gaba but sometimes take 100 mg at bedtime if it gets bad.
 

Atsugi

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FWIW, in recent years I've developed RLS in my arms. I've had it in the legs and hip for decades.
Pramipexole, taken a few hours prior to relaxing for bed.
 
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