Dancing Legs -- Sound Familiar???

[ScooterVanMan]

This is another one of those "Does anyone else get/have/do's."

My legs dance sometimes. At least, that's what I call it. At night, when I lay down and try to sleep, (Or sometimes in the morning. Or if I'm sitting in a car and my legs aren't supporting me). One leg or the other (and always one at a time) will start to get this sensation, a building pressure feeling, and I have to move my foot. I just lift my foot up at the ankle and then it goes away. But only for 30 seconds or so. Then I have to do it again. If I don't move my foot it will do it itself, with perhaps a bit of pulling the entire leg up, but that's it.

This has been going on for years. I've tried lots of things. Mostly sleep aids, and Baclofen at night. But it doesn't really fall into a nice neat category. It's not RLS, because there are no creepy-crawling feelings to it. PLMD doesn't seem to fit either. Probably not actually spasticity, since I just have to raise the foot and that's it. It’s certainly a nerve-y kind of thing. So I thought I would put it out there to the MS universe, to see if anyone else has experienced this?

[MarkLavelle]

It's not RLS, because there are no creepy-crawling feelings to it.

Why are you so sure it's not RLS? I'm not sure what you mean by "creepy-crawling feelings," but I would simply characterize my RLS as "an irresistable urge to move."

I take gabapentin for it, and it does help (but doesn't eliminate).

[wally8]

Yes I can relate You have discribed it very well. This sx has been getting worse for me over the last few months spoke to my neuro about it at my last appointment and he says it is MS related.

I have the sensation almost like an electrical current is building in my legs(like you only one at a time) and I have to move them to make it stop, if I suppress the urge to move them the current builds and my leg will jerk and jump on its own. If I stick my leg out from under the blanket the cold air triggers the feeling as well. It was only happening when I went to bed and relaxed, but now I can feel the slight sensation in my legs during the day.
My neuro prescribed Endep25, but all that seems to do is make me really sleepy the following day. This sx is really taking its toll on my quality of sleep, meaning Im not getting any
I'm interested to see others responses to this question and what they do to eleviate it.
Thanks for asking the question Scooter
Kathy

[Thinkimjob]

Well, my left leg shakes uncontrollably up and down when I'm tired or hot. Only happens when I'm sitting down and I put my feet up on the foot-stool.

We're talking rattling the furniture .

It is quite bizarre and continues until I lean hard and repeatedly on my thigh. It used to happen when I'd done too much exercise. Obviously a shower is now too much exercise for me.

I think it is called "clonus".

[ScooterVanMan]

Hey Mark--

I had always assumed that RLS caused what was described as uncomfortable "creepy-crawly" feelings under the skin, and that the legs had to move a lot more than just lifting the foot every minute or so.

Funny part is, I'm already on Gabapentin for nerve pain (headaches), 900 mg 4x a day. Maybe I need to read more about RLS, but I had spoken to someone on an RLS website a long time ago who thought my symptoms didn't match.

Thanks!

--SVM

[zilphia01]

you bet

Mine is right foot, and it just goes off and kicks at night when I am sitting.

I warned a friend of mine to move her chair from so close to me in front of me, and she poo pooed me. During the presentation I WHACKED the back of her chair when my foot jumped 3 times. Now she is a believer. hahaha

Thankfully for me there is no pain, just the right leg/foot kick jumping.

[MarkLavelle]

I had always assumed that RLS caused what was described as uncomfortable "creepy-crawly" feelings under the skin, and that the legs had to move a lot more than just lifting the foot every minute or so.

I've read that, too, but I wouldn't describe my (definite) RLS that way. On the other hand, a single motion doesn't do anything for me -- I have to move constantly to get any "relief" (which of course it isn't, really ).

Sometimes I just think it's impossible to accurately describe anything but the most common sensations, and I wonder how medicine can even be considered a science. I can string words together and give you an idea of what I'm feeling, but you can't feel it....

[ScooterVanMan]

This sx is really taking its toll on my quality of sleep, meaning Im not getting any

Hi Kathy--

Sorry, for some reason I missed your post earlier (can't blame THAT on the legs I guess!)

The trick for me has always been getting to sleep. I feel if I can do that then I'm okay, it's not going to be a problem after that. So many of my solutions over the years have been sleeping-pill related. Or other things. I took 2 20mg Baclofen just at night for this. That turned into 3 last year. This year the new trick is 1 at around 6 PM and the usual 3 around 10 PM. Does that work? Um, kinda? I think? We'll see?

I suspect that this might not actually be the solution, and would rather not take handfuls of any med if it's not really helping.

That's why I posted. I know from experience that us crazy MS patients know better than anyone else what crazy sx's we have!

[ScooterVanMan]

Sometimes I just think it's impossible to accurately describe anything

Well, when I said I've had this for years, I meant YEARS. And had my neuro going down a non-spasticity path for a while because I was indeed describing it incorrectly. Even recently I was saying how I had to move my left ankle and crack the right one. When the truth is that my right one is pretty crack-y, and I really just had to move it, and saying "crack it" just confused the issue.

I guess the only good part about when I'm laying awake at night being tortured by my legs is that it gives me a good opportunity to study and try to describe better what's happening!

[MarkLavelle]

And had my neuro going down a non-spasticity path for a while because I was indeed describing it incorrectly.

I don't think "incorrectly" is the right word here. What can anyone expect us to do other than describe how it feels to us? We're not the doctors!

Fortunately for me, my physiatrist is really good at asking questions that help him make the leap from my description to his understanding. Worth his weight in gold...

[ScooterVanMan]

What can anyone expect us to do other than describe how it feels to us? [U]

I guess that just as my disease course is a work-in-progress, so is my ability to describe it.

[wendya432]

Yes, it sounds extremely familiar! I know it is different than RLS. I had that with each of my pregnancies. This is different somehow.

I do have it happen that if I don't move my leg/foot myself, then it will eventually move on it's own and jerk out like crazy. I was explaining it to my husband that it feels like when they are charging the paddles on a defibrillator! (that is what it is called, right? brain fart) Like I can feel something intensifying and if I don't move then they kick out. I should probably start shouting "clear!" lol But if I move then it doesn't happen. And it is not a continuous thing like RLS.

My primary care dr gave me muscle relaxers as she didn't really know what to do about it but wanted to try to help me. They don't do anything to stop it. But they do help in that after I move or my legs jerk, then they don't remain tight afterwards. Like they do without it. Which helps a little in letting me fall asleep.

Sometimes if I try to ignore it too long I end up with my legs stiff straight, toes pointed, and just miserable. So I end up making sure I can move them before I get to that point. It sucks and really takes it's toll on sleep.

I am still in limbo, so I don't have any answers, or really anything to help. But I go to a new neuro at the end of the month and am going to ask what can help with this. With the fatigue we all have already, it sure doesn't help to have this keeping us from getting to sleep. (But it doesn't happen once I've fallen asleep)

[MierryLea]

That's exactly what I get sometimes. It's like this building feeling of NEEDING to move my legs. Especially if I've been stuck in a car or lazy on the couch for a period of time. I'm not sure if its RLS or MS-related. I used to go months without having any issues with it and then it would happen for a few nights. About 6 months ago I went through a period of time where it was happening almost every night.

I try to get more exercise--at least walking around so I'm not sitting for long periods of time or breaking up the times where I am sitting for long periods (I have a desk job so that doesn't help much).

My doctor recommended that I take some calcium supplements--she has had other people find some relief with them. I must say that I've been doing a LOT better with it since these two things.

Hope you find something that helps you. Its very frustrating and there's no way for someone who hasn't experienced it to know what its like. Sometimes I'll be laying on the couch snuggling up to my BF watching a movie and my legs will just start jumping. what can you do?

[ScooterVanMan]

Sometimes I'll be laying on the couch snuggling up to my BF watching a movie and my legs will just start jumping.

Ah yes, those quiet moments when I'm holding my wife and she says "This is nice" and so I kick her!

[ScooterVanMan]

Yes, it sounds extremely familiar! I know it is different than RLS . . . I go to a new neuro at the end of the month and am going to ask what can help with this

Yeah. I did some minor research and decided it didn't tick all the boxes of anything. I write a lot of things off to being just "weird MS stuff," but thought I'd see if there were answers out there.

My neuro is very good, but jaded. I've seen him so long that if I come into his office upright, that's victory in itself.

Can't say I disagree.