Severe jerking legs: I have had rls for... - Restless Legs Syn...

Restless Legs Syndrome

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Severe jerking legs

Ruthmary profile image
9 Replies

I have had rls for 50 years since age 21 and have always had severe jumping and jerking of the legs when at rest even during the day. I've been on Ropinerole for the past 15 years and now believe I have the augmentation . I take 2mg bedtime and 2 at midda y and I couldn't live without it. How many others get this jerking? Not many posting here seem to mention it. The muscles contract then release with a jerk which though not exactly painful is a most horrible sensation. so difficult to describe to anyone who has not experienced it.

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Ruthmary profile image
Ruthmary
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9 Replies
Sue777 profile image
Sue777

Hi RuthMary, yes I get the jerking legs as well and it is a horrible feeling. Unlike the RLS which mostly affects me in the evening and night the jerks can happen anytime sometimes on getting out of bed in the morning. I am on a Ropinrole which has worked well for me over the past 3 years but over last few months I have had to increase dosage to calm the RLS and so may be the start of augmentation.

Windwalker profile image
Windwalker

Ruthmary,

I have had RLS for more than 40 yrs and your description seems almost the same as I have had. Mine has started as early as 10 AM. I am taking, what one doctor said is enough drugs that I should be comatose. I also take 2 mg ropinorole time release, but I take one at noon, one at 5 PM and one at 9 PM along with 1500 mg of neurontin for fibromylgia and vicodin at 9 PM. When I go into ''my act'' as I call it, I look like a person with tourette'e syndrome, jumping and jerking and wringing my hands. My doctors have not seen me in full blown act, but I slept over at a sleep center and some of them saw the video and can't believe my jumping and jerking. I will take almost anything to get relief when it is going on and nobody knows what I mean unless they have it too.

Gonzo123 profile image
Gonzo123

I get exactly the same but I would describe the feeling as a severe spasm which seems to come over me in waves including my arms. I am on Rotigitine Patches which work but not all the time.

This is what RLS is like for me if I don't take any medication: I go to bed and within 20 minutes one leg starts to jump. And it's not just a single kick - its a spasm that shakes my whole body. It does this every 10 seconds - and then the other leg joins in. This can go on for 5 or 6 hours. Sleep is impossible.

beady3 profile image
beady3

Ruthmary I can join the rest of you with the jerky legs,you sit down all nice then the leg just shoots out you get up walk about thinking it's safe but no of it goes again but that isn't what I call rls,at one time my legs used to buckle when it was bad ,things are a bit better at the min thank goodness.

Ruthmary profile image
Ruthmary in reply tobeady3

Thanks for all your replies. It's so helpful to know I am not alone in my jumpy legs. Funny thing is, Beady3, you look just like me! One day I will get round to putting my photo up there. Night, night. I hope you all get some sleep.

annwilson profile image
annwilson

I to have rls and like yourself I do not have pain but have a very uncomfortable feeling with it .I take pramapexole 2 after lunch. As I become very agitated when not have taken meds

Johnnycomelately profile image
Johnnycomelately

I've had the dreaded RLS like you since my 20's - the jerking only started over the last couple of years - It's sporadic and I've never been able to put a finger on doing anything different to cause it to happen. Some days I do not have any 'jerks' whilst others days it can be quite persistent.

cumoneileen profile image
cumoneileen

I to have had RLS 50 years. been on so many medications over the years.

Its only in the past few years doctors know what it is all about.

You describe symptoms eg. Just before they begin to jump I get a crawling sensation in my legs so I know I am in for it!!! they jerk and jump involuntary. Ropinprole has been a godsend for me and sometimes a co codamol will do the trick.

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