I am new-ish

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Buffheart
Posts: 7
Joined: Sat Dec 06, 2008 2:59 am
Location: Bremerton, Washington

I am new-ish

Post by Buffheart »

My neuro told me, about 1.5 weeks ago, that I have RLS, but I don't have many of the symptoms here. When I sleep at night, I lay still. My legs do not kick or jerk at night, though sometimes I keep flipping from side to side until I fall asleep. I do not feel as though I have to walk around, and nothing hurts. I also do not lose sleep at night.

When I am awake, I have muscle tics. I may be laying or sitting, and my arm or leg will jump unexpectedly. It used to be that individual muscles, or small parts of a larger muscle, would twitch, sometimes just once, sometimes many times. Sometimes it will twitch on and off all day long. But it happens all over the place, not just in my legs. It is very annoying to feel, but kinda cool to watch, and I can't feel them coming on at all. It's random.

They do not occur always at night. Usually they are spread out over the whole day (but my legs don't tic if I am stretching them or using the muscle, only when they are relaxed). I first began to really take note of it when I was 12. Since then, I cannot remember a day that I didn't tic at least a dozen times.

I am currently, and have been taking, Requip XL (the bottle says it is 2 mg) at night for the past week and a half, with no results. I started at one pill daily, but now I am doing two in the evening. The doctor said I can take up to 3 daily. How long does it take to work? He said it should only take a few days.

Sorry to go on and on, but I am just trying to figure out what's wrong. Are there people who have RLS that have these same symptoms?

P.S. They took some blood, and we are waiting for the results. He said I might be anemic, which is common

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

RLS???

Post by mackjergens »

I personally do no think you have RLS, from what you posted I didnt see anything that really relates to RLS. But I am NOT a Dr!!!

I will post this web site link to "We Move" on the left side of the screen is a long list of movement disorders.. it will probably take you awhile to read each one, but I would do so. Just to see if you find something in the movement disorders that relates to what you are going thru.

RLS is a movement disorder also, it begins with a strange feeling within the leg muscles, I call it creepy crawlies, like ants in my legs, others call it by other names, but the one true thing about RLS is when having an attack you have to move your legs, for most we have to get up and walk, as walking/moving is about the only thing that stops the strange feeling. The RLS foundation puts out a quarterly magazine called "The Night Walker" which pretty much says it all. most all RLSer's end up walking the floor all night due to the strange feelings.

While I have never taken the parkinson med requip, you should do some research on the amount you should be taking, the amount you stated sounded rather high to me, but again I have never taken it, but do know from reading this message board that less is better with these meds, as they will cause augumentation (symptoms getting worse)
________________________________________________--

This info is copied/pasted from www.rlshelp.org

Requip (Ropinirole)
This is a new Parkinson's medication which is a more specific dopamine agonist similar to Mirapex (binds to the D2 and D3 receptors). Requip is available in 0.25 mg, 0.5 mg, 1 mg, 2 mg, 4 mg and 5 mg tablets. The starting dose should be 0.25 mg, which can be given if needed up to three times per day. The 0.25 mg dose can be increased by 0.25 mg each week for the first four week. Then the dose can be increased by 0.5 each week up to 3 mg three time per day (9 mg per day).

If necessary, the dose can then be increased by 1 mg per dose each week to a maximum of 8 mg three times per day (total of 24 mg per day), but doses greater than 6-9 mg per day rarely add additional benefit. RLS sufferers will generally need between .25 mg and 1.5 mg per day. Parkinson's disease patients generally need between 10-16 mg per day.

The antibiotic Cipro (ciprofloxin) increases the blood levels of Requip. Requip is metabolized in the liver so may be a better choice for dialysis patients.

Side effects with Requip include nausea (can be prevented by taking the medication with food), dizziness, and sleepiness (similar to Mirapex above, but usually at higher doses than most RLS patients tend to need.).

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

We Move web site link

Post by mackjergens »

oops forgot to post the We Move web site link

http://www.wemove.org/stayconnected/

Buffheart
Posts: 7
Joined: Sat Dec 06, 2008 2:59 am
Location: Bremerton, Washington

Post by Buffheart »

Thanks for the link.

As for meds, well, the neuro gave me two bottles of the Requip XL and told me to take one every evening for about a week. He said that if it still does not help after a few days, take two daily. He told me that I should not be taking more than 3 daily. I thought it sounded a little high to me, too, but he's the doctor, not me. He said to call back in a few weeks if it still isn't helping.

ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

Huh. I'd tend to agree with mack...but I'm not a doctor either.

I can say that the RLS Foundation and most RLS specialists all seem to agree on how to diagnose it, however. It's by using 4 criteria:

1. An urge to move, very often accompanied with a weird, odd, painful, or otherwise annoying feeling.

2. This urge is worse at night.

3. The urge worsens when at rest or when inactive.

4. Moving makes the urge go away.

The fascinating thing is that the diagnosis is usually made quite easily by the person who has it...not doctor needed. It's very rare that someone wouldn't fit these 4 criteria. The one criteria that has flexibility is the second part of 1 - that you have a feeling. Some people just have an urge, but don't have any odd or painful feeling.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Buffheart
Posts: 7
Joined: Sat Dec 06, 2008 2:59 am
Location: Bremerton, Washington

Post by Buffheart »

Well, my legs tic when I am resting, and they don't when I am walking/standing/etc...

But, as soon as I relax the muscle, it comes back. It is not all day every day though. I am trying to keep a journal of when it happens, how long, and where.

Buffheart
Posts: 7
Joined: Sat Dec 06, 2008 2:59 am
Location: Bremerton, Washington

Post by Buffheart »

I should also mention that I have a hard time getting and staying comfortable for more than 30 seconds. My legs and butt start to burn a little if I sit in one position for too long, so I shift, only to have the same thing happen 10 seconds later

ViewsAskew
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Post by ViewsAskew »

RLS doesn't cause the muscles to tic or twitch or move, really.

When you read those four criteria I listed, do they apply to you?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Buffheart
Posts: 7
Joined: Sat Dec 06, 2008 2:59 am
Location: Bremerton, Washington

Post by Buffheart »

Yeah, they kinda apply. I mean, it only occurs in my legs when I am resting, and stretching whatever muscle is bothering me helps so I can't feel it.

He said something about myoclonus

Buffheart
Posts: 7
Joined: Sat Dec 06, 2008 2:59 am
Location: Bremerton, Washington

Post by Buffheart »

I meant, when it occurs in my legs, it is only when I rest them.

Neco
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Post by Neco »

This is a confusing case to hear about... I want to say it's not RLS.. But does seem to show some minor RLS symptoms.

RLS doesn't cause muscle ticks though.. that is like periodic limb movement while awake or something, I think its called. Or could be some other problem with nerves, may even account for the burning feelings..

I guess you could give the requip a try and if it does nothing, then go get a second opinion from someone else.

HeatherB
Posts: 116
Joined: Mon Jun 30, 2008 12:00 am

Post by HeatherB »

I would do some reading on Periodic Limb Movement Disorder. That sounds closer to what you are experiencing. I have PLMD as well as RLS. I have the involuntary movements with out the RLS symptoms. Though most of the time they go hand in hand for me.

Sojourner
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Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

B, Another welcome to the board. It may be possible that your "tics" are something called "benign fasciculations." I did not start having them til I was prescribed Klonopin. They reduced dramatically once I stopped the Klonopin but I still get them occasionally but perhaps for different reasons. Anyway, I would get them in various parts of my body.... arms, legs, stomach, etc. Felt like water boiling or popcorn popping underneath my skin. Not painful but annoying. Something to querry you doc about. Also, I agree that from the information you have provided RLS sounds a bit sketchy. Hopefully, some of the info you are getting will be helpful or at least be food for conversation with your doc(s). Again, welcome and best of luck. M.

Edited:

Decided to add one link (although there are many). As you can read these usually a benign and require no treatment but they also can represent other possibilities. So again, query you doc.

http://www.nlm.nih.gov/medlineplus/ency ... 003296.htm
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Buffheart
Posts: 7
Joined: Sat Dec 06, 2008 2:59 am
Location: Bremerton, Washington

Post by Buffheart »

He said something about myoclonus

ViewsAskew
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Post by ViewsAskew »

Myoclonus is not RLS. You could have that...I'm not sure how it's treated. It may be treated with the same drugs as RLS.

Another connection is that what they now called periodic limb movements (PLM) is what they used to mistakenly call nighttime myoclonus (or something similar). They eventually decided it wasn't really myoclonus, so they named it PLM.

Not sure how all this helps you. It seems to me you may need some more info from the doc.

If you go to wemove.org, you'll find information about myoclonus.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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