Anyone else have this problem?

Late in the evening, after my meds begin to wear off...my leg starts moving a mile a minute! Argh.

My leg moves non stop the minute I sit down or slow down, it always has and I suspect it always will. When I go to sleep many times i need to let my leg do it's thing til it wears me out. Tea Bag Boy used to ask me to not come to bed til i was weary and ready to sleep because it kept him awake. Now he is used to it and it doesn't raise an eyebrow. I get alot of jokes about it at work, home and out. Sometimes it even annoys people because it will either make them nervous or it jiggles something ( it is the pronounced) like the dining table or the monitor to the pc etc.

Don't know if this is "restless leg" ... but when I go to bed... I *HAVE* to shake my foot... only my left one. Hubby says it stops when I fall alseep. Drives him nuts because it shakes the bed...lol

Yeah, my legs bounce as if there was a baby sitting on them all the time! If it quit, I guarantee I'd put on a quick 10 pounds!

Mine doesnt stop, even in my sleep. My family likes to make fun of me sleeping with one foot in the air.

Yea, I have had RLS for all of my life. I am going to a sleep study in May to get medication because it actually wakes me up at night. Though after taking Concerta my sleep pattern is better. RLS is that achy, tingly itchy "have to move or I will go crazy" feeling when we get tired. It also can cause leg jerks in your sleep with is Nocturnal RLS and will wake you up. So you are left feeling not refreshed in the morning. Medicine for ADD is suppose to make the problem worse.

My legs will always wiggle back and forth before I sleep. I have been doing this since I was knee high to a grasshopper and though sometimes it goes into remission it will always come back full force a few months latter.

Oh, Mystica, I am so glad you mentioned the actual feeling! I deal with this every night almost. Very rare, since starting meds, that I DON'T have it! I HATE it! It's horrible. And you (I) can just shake it off, I have to actually get out of bed and walk it off. I get it at work sometimes too, but then my work station is anything but ergonomic! It doesn't wake me up, but if I don't fall asleep fast enough, it will keep me up until I get out of bed and pace for a while. It's been so bad at times, I've had to take a Vicodin! I've even had the same symptoms in my arm!!!! Obviously you haven't found complete relief, thus the sleep study, but have you found any way to relieve it even a bit?



Originally posted by Mystica
Yea, I have had RLS for all of my life. I am going to a sleep study in May to get medication because it actually wakes me up at night. Though after taking Concerta my sleep pattern is better. RLS is that achy, tingly itchy "have to move or I will go crazy" feeling when we get tired. It also can cause leg jerks in your sleep with is Nocturnal RLS and will wake you up. So you are left feeling not refreshed in the morning. Medicine for ADD is suppose to make the problem worse.

I cant take certain meds, like Benedryl, without this getting worse. I cant explain the feeling of having to move yet being so tired....

I've heard that about the Benedryl too. I think my mom told me she has that reaction too. She suffers from RLS too. Neither of us has been formally diagnosed.....but it's pretty obvious what it is, ya know!

As far as 'having to move yet being so tired...' I know exactly what you mean. I will lie in bed and just shake my leg hoping, even tho I KNOW it won't work, that it would just stop or I'd fall asleep. I'll be sooooooooo incredibly tired, and I will HAVE to get out of bed and walk until I know it won't happen again. Sometimes, I get back into bed too soon. :( It's really awful....like I (ADD) need anything else to disrupt my life! LOL!


Originally posted by Lafnalot
I cant take certain meds, like Benedryl, without this getting worse. I cant explain the feeling of having to move yet being so tired....

I just introduced myself on the introductions board, for those who missed it!, I am a 39 year old female newly diagnosed with ADD. I have been on Zoloft for 10 years, Strattera for 2 days, and Mirapex for restless leg syndrome for 3 weeks. The Mirapex is mostly used for Parkinsons Disease to increase Dopamine - evidentally low levels of Dopamine factor in restless leg syndrome. Now that I am on all 3 drugs I reckon (i live in Kansas, we say reckon here) I have all 3 major neurotrasmitters covered! In my Hyper Focusing quest to learn everything I can about ADD in the past few weeks, I ran across an article which stated something to the effect that 50% or so of people with ADD also have restless leg syndrome. I haven't seen anything on this forum about restless leg syndrome yet, although I haven't yet gotten to the archives, and am curious if anyone else suffers from it? The Mirapex by the way was a God send, worked the first night - although I still have insomnia, my legs feel good! Lost and Found

I've not had a consent problem with restless legs but I have had this. One night I stayed up most of the night with a heating pad on my legs (I was desperate for sleep and tried everything) I've even combed my legs with a hair comb. This is a technique someone told me they learned to use on their hyper child to calm them down...It did work but only once...

I had the worst case of this during a 7 hour car ride ! My husband had to keep stopping so I could get out and walk. As soon as I got back in the car it came back. It was so awful !
My husband wants to take a trip one day to Niagara Falls a 10 hour drive !! I'm afraid to do it.......

I don't take any meds for it .........

Oh, I'm notorious for having fidgety legs, regardless of whether I'm on meds or not... often I don't even notice I'm fidgeting until someone draws it to my attention.

My right leg is bouncing up and down as I type this. Sometimes, I do this for so long that I start to cramp. It's also very embarrasing when others notice first and point it out to me - sometimes they add "Hey, maybe you should cut down on the coffee?" I could save so much energy if I couls stop all this fidgeting... (When on vacation many of my "fidgety" syptoms go away though - so maybe we're not talking about the same thing)

i have this too sometimes.it seems to come on only at work.is it nerves?anxiety?psychosomatic?sometimes i think its because im wearing nice clothes.when im home in my jeans and tshirt, goes away.

lostandfound: The theory of RLS and ADD is that they are both in part possible caused be some deficit in the dopamine pathways. They come to this conclusion based on what treatements seem to work on both (dopamine agonists). The possible technical theory is that the dopamine neurotransmitter is not sufficiently strong enough to pass the signals to the leg in it's entirety; thus the legs get intermittent signals which cause the spasms'shiocks/worm-like feeling.

As all people are different, and each persons symptoms are different, not all ADD people will have RLS; but I did read the other day that up to 50% of RLS people may have ADD. They studied people who had RLS and found that half the people were symtomatic of ADD, but most were undiagnosed.

My left leg goes crazy at nigtht, mild in the morning and the day can be either.

Thats as much as my research has found, but like ADD, RLS is still largely an unknown.

WHY: My leg bounces too!

Hope this helps.

Paul.

I'm curious, I get what I call lightning throughout my body. All of a sudden I will feel a jolt, for example, travel the length of my leg, or arm or even down my body. Is this the same thing as you all are discribing? I don't get this all the time, more like once every two weeks or so.

If you look on some Restless Leg Syndrome websites you will find people have all kinds of descriptions for what they experience. For me, its an irritating crawing sensations that is from my knees down, I have to keep shaking my legs to distract myself from the feeling. The second part for me is a tighting feeling at the tops of my feet which extends down to my toes, if I don't move my feet, my legs will jerk.

However, I do have the sensation you are experiencing also - I get lighting bolt type of sensations starting at the inside of my thighs which shoot down my legs. UGGHHH!

Oh, I hate RLS! I get it rarely but it is a terrible feeling. I get it at night and the way I can describe it is that it feels like someone is poking at a bare nerve down my leg and it causes a feeling that is awful. I will kick to get rid of the feeling. It's similar to someone raking their nails down a chalk board, only through your legs.:eek: It would be terrible when I was pregnant.

Yup. I have that too. It's like the feeling in your spine that makes shiver, except it lasts longer and it's in your legs. The dopamine connection is interesting, Paul, since I just dropped Wellbutrin (increases dopamine) and started Strattera (works on epinephrine, not dopamine) so we'll see if it happens more now. I HOPE not!! It's a terrible feeling.

Originally posted by LostandFound
For me, its an irritating crawing sensations that is from my knees down, I have to keep shaking my legs to distract myself from the feeling. The second part for me is a tighting feeling at the tops of my feet which extends down to my toes, if I don't move my feet, my legs will jerk.

However, I do have the sensation you are experiencing also - I get lighting bolt type of sensations starting at the inside of my thighs which shoot down my legs.

Thank you for putting this into words !! I've never been able to do so and this is just how it feels for me..

Paula

I used to get the RLS but havent had it for a long time

I called it speeding as many many years ago in my young and foolish days every time I did speed my leg would go like that

I wasn't aware there was a name for it

Tiggwin,

Latest thing I read on ADD is that the dopamine receptor that seems to help ADD supperers the most is subtype D4. Now, I can't remember which receptors the RLS dopamine meds affect. dont ya hate this memory thing!!

It's interesting that you are going off wellbutrin and onto stattera. Lets us know how you go. Epinephrine from my rusty memory is related to adrenaline, which in theory is more energy/more attention. Kinda like when you are tired, and you splash your face with water, you become more awake not becasue you have an increase in dopamine, but you get an adrenaline hit (fight/flight). Basically you are scarring yourself awake!!.

I've read of some people having good results with stattera so good luck!. Wellbutrin can be horrible for some, great for some and do nothing for some. I never did read of anyone using wellbutrin for RLS so I'm guesing RLS could be D2 or D3 receptors.

I havn't tried any meds for mine yet, but I've got a large list and will see how things pan out. More reaearch, more doctors, etc..

Sleepzalot

I find this thread particularly interesting because I became familar with RLS after reading "The Polio Paradox".

I don't have it, but I do have something that the author mentions in the same section (about motor/sleep disturbances): "sleep starts".

Basically, as I am trying to fall asleep (nap or bedtime), and consciously relax my muscles, various groups of muscles will suddenly twitch or jolt.

Most frequently it is my legs, but I don't have the "unscratchable itch" sensation of RLS. My shoulders, arms, and even stomach muscles do it too.

It seems to be slowly getting worse (hence the morbid cruise in post-polio land -- I am old enough, and it is possible to catch "non-paralytic" polio and never be diagnosed -- but I digress...). Last night my upper left arm and shoulder jerked so violently it flopped my arm up in the air.

Go figure....

Ken

On occasion I have been sleeping and get the lightning bolt sensation through my whole body

I have to admit I love the sensation and the total disorentation that follows

I probally would think different if it happened in a situation where I knew i had to have my wits about me but when Im in bed it doesnt matter

I don't have RLS, but I am a terrible fidget. As is my son. Some days it is worse than others, and it is definitely worse when we aren't being stimulated.

On the subject of "Lightning", that has happened to me occasionally! It's really freaky when I am 95% asleep and all of a sudden my body will spasm and I'll not only wake up but probably accidentally clobber my poor wife in the process. Doesn't happen often, but happens enough for it to be a pattern...

Itching sensation? I get that and no matter what you do it can't be itched. Its like my skin is "twitching" or something.
So maybe I do have RLS. Is it serious or just another annoying thing?

As a youngster, I used to rock myself to sleep. Actually rolled back and forth just to calm myself into sleep. Obviously, it was unintentional. Just the hyperness cranking through my body. Then, I began bouncing my legs up and down to fall asleep as I reached adolescence. Some of my roomates in college had to throw pillows at me during the night because I would start bouncing my legs in the middle of sleeping! Sure it annoyed the hell out of them.

Kassie --

In answer to your question, I first heard about this in "Polio Paradox", among a list of neurological side-effects of polio-damage nerves. Generally, it's supposed to be somewhat inheritable.

You most commonly read about it as a sleep disorder. If it is keeping you awake, go see your doctor.

There aren't any specific medications for RLS, but one is dopamine, the flavors used to treat parkinson's -- so that should give you some idea that your AD/HD is probably related (to your RLS, not parkinson's...), since misprocessing dopamine is a likely cause....

Your symptoms sound like you do have RLS. You might want to do a web search on the subject. Several good sites came up when I just did a Google search on the keywords:

"restless leg syndrome" medication neurological treatment

Check those sites out and tell us what you think.....


Ken

Wow, didn't think a leg could actually make a person want to walk around and kick on those late nights! I have RLS and the only thing that works for me, is to take a hot, hot bath before bed which relaxes me. If i think about my leg wanting to kick, it will only cuase my leg to jump all night long!

I have problems with my legs and have since 1989. But I also have Tourettes. I dont' have a dx on my legs yet. But i et severe pain in them. Sometimes it is both legs, sometimes one leg. And they can hurt in different areas. They burn and it feels like you have put a match to them at times. It was so bad in 89, they had to put me on darvocet for the pain. Well, I changed birth control pills and it got better, but it has not completely gone away. I recently had an MRI done and they found a bulging disc and I had my second EMG done which came up negative. So what is going on with my legs, well I am clueless. But I do know it is painful and I have better luck taking aspirin than anything else for the pain.

I am not sure if it is related to RLS or not. But I have a feeling it is a circulation problem.

You know... my father always was bobbing his knee up and down, it would shake the dinning room table :D

I've found that simply stretching before going to bed helps to keep RLS at bay. Touch your toes keeping your legs straight. Lean forward against tghe wall and keep your heels on the ground to stretch your calves. While standing on one leg, bend the other up and grab your ankle and pull to stretch your thigh.

Rinse. Repeat. :)

Also, for some reason, I get it more when lying on my back than on my side.

Yeah --

I've read that the best way to get rid of the irritation is to just get up and walk around a bit (if its your legs) -- just like scratching, but a different "itch".

Also, the knee-bouncing thing. That is DEFINITELY AD/HD hyperactive behavior. My first clue to my condition was noticing all the fidgeters and toe-tappers in an after-care support group (I was a "friend/family member", not a patient) -- and then I noticed that my toe was tapping too, and I had no recollection of starting it. The others all had AD/HD as a co-morbid condition....

Ken

I suggested to my doc that amputation might be worth trying....should have seen her face drop!! i told her I wasn't serious, and that maybe a night in the maternity ward with an epidural could be worth trying.

I think she thinks I am crazy....the difference is, I know I am..lol

Sleepz

My brother and I have always had this and to this day if one of us is more irritable than usual ;) will ask if the jimmy-leg was bad last night. I didn't know it was an official thing. Someone said previously that it worsened for them during pregnancy, another one said birth control pills....ditto for myslef, about ten times as much.

As to the daytime behavior, the leg twitching for me has become something I've learned to do to channel my fidgetiness in situations where adults are expected to keep still, church, meetings, etc. I think it's the least obvious thing I can get away with.

I started lpaying drums so that people would at least see my leg twitching as something somewhat explainable....now I just pretend to be thinking of a song or something .....unfortunately there arent many songs out there that are a steady 4/4 time at about 300 beats per minute.....

My leg does that whenever I'm sitting down for more than a minute. I can stop it when I think about it though, but it's hard. :( It's irritating! Having my leg shake just makes me feel even more restless than usual.

I have had this too... when I was younger it was pretty bad...

to me, it feels like when you try NOT to itch an itchy part... but the thing is, you can't just itch RLS stuff, it won't go away unless you keep moving that part.

I get it in my rear end and my legs...

I read up on it, and it is a neurological issue.

I read that putting COLD WATER on your feet will help... and it did!
I also read that caffeine will make it worse (and I had just had lots of cocacola to help me stay up to study).

Nope, I don't have this problem... but I do fidget with my fingers and hands, especially when I'm driving or watching a movie at the theater.

Interesting Discussion. I am in my 40s Adhd diagn - past June.. Still looking for answeres on ?? I call it the figits - it sounds similar to most descriptions- to me this is the WORST part of the package. Sleep must always come on fast or it will wait until another day or innappropriate time! Usually it Starts in the chest but all body parts have been visited at one time or other. within a minuit of being still it will start builing until it becomes unbearable - I am grossly understating this - I have tried every self med way I could to relieve it With very limited sucsess -Used to run up and down my street at night in a fury to try to relieve it. First time I took dex - prescibed for adhd WOW! Calm and clear for first time in my life! Its not the solution but has potential - another discussion. All depressants would make problem worse - when I was about 10 or 11 or so I discovered that cofffee made me feel good. I drank it to the point I was taken to doctors - (my parents thought that was not normal behavior) - Its Funny but no one seems to listen to the kids and what there "saying" Bact to the present - At about 35 I got so angry with my figity body - close to loosing it - lack of sleep, age , pressure with work, ect... I thought to myself " if its awake you want to be then awake you will be!!" I made a POT of the strongest mud awfull coffee you could imagine. (time= 1:30 am - usuall bed time with unusually bad figits) And drank it! - Use 18 % cream if you do this ... it helps get it down. 1/2 hour later with massive gut rot, I thought I was going to pass out. TThe figits disapeared and I felt very sleepy. So now I take dex shot/ long day and night. Its tough to dose correctly all the time especially at night but its getting better. The shear pleasure of just sitting still is still very new to me Even if I take too much and cant sleep -it makes me very relaxed but too clear in the head -I still love it!

Its late Good night
Any one else take the stims at night for better rest - What issues?

I have Restless Legs. My doctor prescribed Mirapex. I take 2 at 5pm & 1 at bedtime. They are a real lifesaver.

I defintaley don't have RLS, but I do jiggle my leg (or both legs) ALL the time. I can stop it if I think about it, but I dunno... I think sometimes it makes me feel better to keep going! It never has been a problem when i'm laying down, but ALWAYS when I'm sitting. It annoys my bf to NO END at hockey games becuase he can feel it - I don't even realize I'm doing it half the time!! LOL

I've gotten a lot of comments like "wow - too much caffine, eh?!!" but I dont' relaly drink that much caffine... and I'm not on any stimulants right now either!!

Then peopel also ask me all the time if I'm nervous about somthing (especially since it happens when I'm sitting at a desk and at exams) but I never even connected the two. I can feel perfectly calm and my leg will be going out of control.

it's weird becuase it seems to go in cycles - like for a few months it won't be a problem at all, then suddenly it will come every hour of every day for a few more months. I don't think it was ever a problem when I was a kid either.

(I also get the lightening thing - it feels like some huge jolt just shot through my body - but I kinda like it too - it's kind of cool!)

In my case, it's only my right leg. It occurs when I am a passenger in a vehicle, while sleeping, or sitting... in the movies & etc... When it occurs, I have to just get up and walk.
The Mirapex works great for me. It is a very small dose.. .125 mg

Wow, I never even realized what RLS was. I used to get those leg cramps all the time when I growing up. I also have a history of Parkinson's in My family.


Missed Signals

Air Date: 07/20/2004


A lot of kids complain of leg pain as they grow, that's why doctors call them growing pains. But some of that discomfort may be linked to something more serious, like Attention Deficit Disorder. 7Healthcast Reporter Janet Wu explains.
A video shows ten-year-old Tyler Schulz has trouble sleeping. His thrashing about is caused by pain in his legs.

Tyler Schulz, Restless Leg Patient
"They start to hurt, it feels like cramping and like poking, like knives almost."

It's called restless leg syndrome. The leg pain is only relieved by rubbing or walking around.

It's a well-known problem in adults, but not so much in kids. Interestingly, kids with restless leg are often diagnosed with Attention Deficit Hyperactivity Disorder or ADHD.

Dr. Art Walters, Neurologist
"They get this leg discomfort, they have to get up and walk around, therefore, they are inattentive because they can’t sit down at their school desk."

Now researchers find that both disorders are linked to low levels of a brain chemical called dopamine.

A Parkinson's drug called L-Dopa appears to help by raising dopamine levels.

Dr. Art Walters, Neurologist
"The drug improved not only restless leg syndrome symptoms, but the ADHD as well. The drug, by the way, L-Dopa, has been well proven in numerous studies in adults to improve the symptoms of restless leg syndrome.

In this blind study patients don't know if they're getting the active drug or a placebo. Brain tests can show if the therapy is working.

The doses of L-Dopa in this study are much lower than that used in Parkinson's therapy. Researchers say that kids should have fewer problems with side effects.

I'm curious, I get what I call lightning throughout my body. All of a sudden I will feel a jolt, for example, travel the length of my leg, or arm or even down my body. Is this the same thing as you all are discribing? I don't get this all the time, more like once every two weeks or so.

Kassie,
This sounds a lot like antidepressant withdrawal. Effexor, Paxil, Lexapro all seem to cause something similar.

EB,
That sounds like a problem I had in college while feeling stessed, alone in a new town. A dietary specialist finally figured out I was way low on Potassium (or was it B vitamins?) and I took some supplements and it went away! THat felt like it was my tendons that were sore... maybe something different.


I have problems with my legs and have since 1989. But I also have Tourettes. I dont' have a dx on my legs yet. But i et severe pain in them. Sometimes it is both legs, sometimes one leg. And they can hurt in different areas. They burn and it feels like you have put a match to them at times. It was so bad in 89, they had to put me on darvocet for the pain. Well, I changed birth control pills and it got better, but it has not completely gone away. I recently had an MRI done and they found a bulging disc and I had my second EMG done which came up negative. So what is going on with my legs, well I am clueless. But I do know it is painful and I have better luck taking aspirin than anything else for the pain.

I am not sure if it is related to RLS or not. But I have a feeling it is a circulation problem.

My right leg bounces all over the place unless I make a concious(SP) effort to stop it.

Drives my wife nuts!

Also, sitting at the dinner table, I really cannot sit with both legs down, I have to have one up in sort of a 1/2 criss-cross style...

Brent

My husband calls it nervous energy... he is always asking me to stop... but it almost painful to stop...

I just recently posted a message about any relation between RLS and ADHD.........I have not been diagnosed with ADHD, but in the process. Have thought I've had it for years tho...........I have RLS, and take Requip. It does nothing! I have taken up to 4 tablets for relief and nothing! I won't take more for the mere fact that I don't want to OD on this!!! I just deal with my legs wanting to jump off my body and run somewhere! Thought it may be related to ADHD, just curious???? Newbie here, but so interested in this disorder, please help:)

Whoever mentioned that it's almost TOO painful to stop the movement!! OMG, that is the best way to put it:) If I stop moving my legs when they go in that "Frinzy", it really does hurt to stop moving them:)

I move mind a lot anyway. I find that later in the evening they hurt and I have to move them!