I have "Restless Legs" in which I take "Mirapex" for.
Without the medication, it is impossible for me to sleep.
So far, it is only in my right leg. It is a twitching, sensation in my leg.
It not only occurs when sleeping, it occurs while I'm a passenger in a vehicle, at the movies, laying on couch, or watching television.
Very annoying.

I have RLS.
It helps to exercise your legs a lot before relaxing.
Runs in place for two minutes or so if you can't sleep.

I was taking Mirapex for few weeks, but my eyes would feel swollen when I woke up. I would also forget to take it early enough, so it would still keep me up. I was told to take it 1.5 hours before bed.

I found that the exercise was a better solution for me.

I have a treadmill that I use daily.
I take the Mirapex.. 2 at 5pm & 1 at bedtime.
My doctor also told me that Magnesium Oxide helps with RLS. I take one everyday.
So Steve.. you control your RLS with excercise only?

Big Huge hugs hun..Im so sorry you have to go through that...does sleeping pills help any or muscle relaxers?

Love ya apc :X

No sleeping pills don't help me any.
Love ya too melly

darnet me sowwy hugsssssssssssssssssss

Always had this, doesn't bother me. I guess I'm just used to it. Although, there are some more convulsive kicks that occur primarily as a reaction to the meds when I am sleeping and those scare the crap out of me.

i also have restless legs, happens when i'm lying down trying to sleep... it doesn't bother me much with sleep, or maybe it's because i've had this for so long already i can't remember when this started.

It was bothering me a lot with sleep before the medication. Now it does not bother me at all. It was bad when I would be traveling or sitting at movies.

I am glad to hear they have a medication that now helps to treat RLS. I had leg problems in 89 and had gone to a doc who ended up being clueless. He thought I had RLS, but turned out that was not the problem. It is a long story.


One thing about Tourettes is that your tics wax and wane. I went through a period where my legs went to town at night in the bed. I just laid there and kicked until the Trazadone took effect and I went to sleep. I am thankful that I rarely have that problem anymore.

In a sense I can truely feel what you go through but I am glad you have some relief

I also have spasms (restless legs) and I kick a lot at night. Sometimes they jerk so bad it wakes me up.

Or I can be sitting here and visibly see my legs jerking when I am trying to relax... not fun. But I am told it's part of my Fibromyalgia.

That's what my leg does. It is always only my right leg.
It was happening when relaxing... trying to go to sleep, sitting in car as passenger, sitting at movies, & etc..
With the Mirapex I no longer have the problem.

Hugssssss Mary, Love ya

I have restless legs...but when I'm awake. I wonder how many calories I burn when my legs are going nuts? :wacko: :bowl:

Lol Big... so true

I also have some pretty restless legs. Tho they generally don't interfere with sleep. I usually have problems when watching TV in the evening with my wife. It can get pretty annoyng for her because I will constantly move my legs around to get the feeling to go away. It feels like I am clenching/tightening my calf muscles. Most of the time I have to get up and walk it off.

Jay

Hello all,
I am new to the board and fairly new to my official ADD diagnosis.

I wanted to share some of my experiences with restless leg. I was diagnosed at least 10 years ago. It is a condition that causes your extremities to "feel" like if you don't move them you "will" go nuts. It can be described in many ways...ie prickly, tingly, etc. One of the things that I have found, for myself is that some meds will aggravate it. Benedryl, most all cold meds but esp the bene., caffeine (oh my gosh...one cup and that night is horrible...just figured this one out....RLS is about 50% better now since stopping), some say too much exercise makes worse (the dr at the sleep clinic has it and she says % show that runners have increased incidence, but for some it helps immensely), prolonged inactivity really does it for me.

I take Mirapex and unfortunately I have to take 2mg every night. I am one of those few that eventually the meds stop working. The sleep clinic also use codeine with a combo of other meds such as neurontin, clonepin, (hmmm...spelling off a bit...a valium like med) and permax.

The sleep clinic told me that benedryl and caffiene are the worst offenders.
I was also told it can run in families.

I can't recommend a sleep study enough. My life changed after going through the program. Now my new diagnosis is add....I have know for years. I also have "fibro fog" ie fibromyalgia. But, the add symptoms have been there since childhood.

If anyone who has had restless leg and taken strattera, I would love to hear how it has affected your restless leg. I took my first dose and hour ago and my legs feel like bugs are crawling up and down them. I am hoping it passes. I cannot afford any more lost sleep (who can).

So glad this board is here, thank you.
Debbie/deborah070

My husband was diagnosed with restless leg syndom during a sleep study. He's taking Klonapin (sp?) as well as pain medication and is doing a lot better. He also has a lot of symptoms of ADD but has never gone for diagnoses. I was reading that ADD and restless leg syndrome are closely related and may even be part of the same disorder. Does anyone else know anything about that?

Scattered

re:#1

Ask your MD to check your "Serum Ferritin" level. If it is lower than "55", it is too low. (According to my sleep Doctor.)

My family doctor was OK with it being 18 -- which is awful. No wonder my CALVES were aching and shaky at night.


NB. Hemoglobin is *not the same* as Serum Ferritin (aka Stored Iron).

Emma

I HATE restless legs. Drives me CRAZY, but I really don't want to take another drug. I'm sure that for me it's just lack of exercise since I sit at a desk all day then come home and vege in front of the tube.

You know how little kids sometimes lay in a "topside" fetal position - legs tucked up underneath them but they are face-down on the pillow? I decided that instead of trying to stretch my way out of restless legs (which I always feel like that's what my legs want - to move and stretch) I would do the opposite - curl up into a tight ball and just put up with the sensation that would run through my legs.

Eventually that sensation goes away and I can stretch out and it works! At least for me. Laying like that I can't get comfortable enough to sleep, so I end up not sleeping well many nights because it's late when I fall asleep, then the alarm goes off too early.

I think places of work should have recess times for adults and they made us actually play, not stand around smoking and gossiping.

My brother had sleep apnea and narcolepsy, I found I was having difficulty sleeping and feeling tired, so I requested a sleep study. The "only" thing they found was RLS for me, which I knew I had, but didn't know the name for it. I tried Mirapex, but didn't find it did a whole lot, so went off it. This was over a year or 2 ago ago.

Then last spring I spoke with a psychiatrist, telling her I thought I had ADD and she put me on Straterra. Later that year, with a new and very stimulating job, I couldn't sleep. As a choral director, the music of all the groups would run through my mind non-stop, plus any number of thoughts. This time the psychiatrist suggested seroquel. I'm taking half a pill, about 12.5 (I don't know what the measurement is - mg - ml...). It has helped a lot. Once I'm asleep, I don't notice RLS at all, and the music hasn't been running through my mind with such repetitive ferocity, although the spring concerts are coming up...

This is kindof a weird question - For those with RLS - have you ever noticed when trying to go to sleep with someone next to you that you RLS is worse? It seems to be that way for me, and I was wondering if anyone else had ever experienced that.

I have had RLS for many many years. The only medication that has worked for me is Mirapex, all the others that I've tried did nothing.
It doesn't bother me to have someone (my hubby) next to me when I'm trying to sleep. It does however bother me when my legs are "bugging" and he rubs them. It just does NOT help at it, if anything it annoys.

things like coco an milk warm not hot hot waterbollt with towl over it helps massagre helps as wellllll.....baby oil sooooo louds ofve things that cna give bit help....dorm

This is an old thread but a very relevant one for me at the moment. It's 5:30 AM where I am and I have had another night of the living dead. I'm in this hateful nighttime pattern caused by Restless Leg Syndrome.

If I can fall asleep, I sleep for 2-3 hours and then it's time to wake up and feel the RLS. It's a difficult sensation to describe -- I had it bad when I was pregnant and my midwife kept thinking I was talking about leg cramps; I don't think it had been recognized or named yet at that point. But it is not like cramps in your legs,but a feeling of aching, intense need to move, hypersensitivity and well, hard to describe.

Anyway, I wake up and try to go back to sleep. Then I go get something to drink. Then I try to sleep. Then I wander around in the dark. Then I try to read. Then I try to sleep. Finally at about 7 AM, it's gone, but so is the night.

I've tried various remedies, magnesium oxide, the right kind of exercise (which only seems to make it worse), warm milk, a pure mind (not really), etc. It's driving me mad -- but wait, I'm already mad.

So I guess I'll have one of those sleep studies done and see if that tells me anything beyond the stunningly obvious fact that I have RLS. Or maybe it will tell me that I don't. My husband went to the sleep lab about 10 years ago because he snored so loudly they were taking Richter scale measurements outside our house. Oh, and he had this rather unnerving habit of not breathing. So he has sleep apnea and the machine and it's really all been a tribute to modern medicine for him.

I know there are various sleep meds for this but I'm afraid to take them because of my other meds. I'm fond of med induced non-craziness, but I'm also fond of being non-crazy because I've been able to sleep.

Sorry for the length of this, but I'm sort of three bricks shy of a load at the moment. And hark, the lark of morning singeth. Shut up bloody bird.

I feel your pain....I get it too ans it sux so bad. It's so hard to fall asleep with that feeling of thousands of ants running over my legs and the feeling that I have to shake them. Eek!!!!!!! I know it's an old thread, just wanted to let you know that you aren't alone.:)

Wow, I'm new dx with ADD as well. Just started Adderall XR and working up to a theraputic dose. Currently at 10mg a day (a.m.)

My restless legs have been with me as long as I can remember. I'm 49 now. I remember when I was little kicking the wall so hard in my sleep that I sprained my ankle.

I have them all day, but they really act up as I get tired which sometimes makes me thing that I'm just tired.

When I get into bed my legs cannot seem to find a place to rest. I "peddle" with them as if I'm on a bike or rub my feet together constantly. I also will kick violently sometimes still. I do mean a all my strength kick. I've really clobbered my wife a couple of times.

Since I am just starting out with the ADD meds I am sleeping a little better.

My MD is going to work on the ADD first then if no improvment with my legs begin to investigate RLS.

Interesting to know others with ADD also have RLS.

Andy

njtrout,

Somewhere I read something of a reputable scientific nature (sorry to be so vague, but then if I could properly cite and organize my research, I'd be able to finish my graduate degree)which indicated that there was a high correlation between RLS and ADD. Interestingly and diabolicallly enough, RLS often starts at around 10 pm and ends in the morning.

I suspect a plot (I didn't get much sleep last night). It must be hellish to have it during the day as well. In our household, my husband wakes up long enouth to say, "You're kicking again" -- which is hardly news to me -- and then I get out of bed to wander.

Peridot,

Thanks for the reply. Yes, since finally coming to terms with the fact that I have ADD I have read that RLS and ADD seem to have some relationship to each other.

My kicking and restlessness have done lots of harm to my marriage. I sleep most of the time in a spare bed because I respect that my wife needs sleep and I should not be the cause of her not getting any from my restless legs. I try to stay in our bed, but the more I try and try "not" to think about my legs the worse they get.

Combined with the ADD and until I started the Adderall XR two weeks ago I was not sleeping for 2 or 3 days a week. I'm better on the Adderall, been getting some sleep but it has not suppressed the RLS.

The lack of sleep and ADD have made it impossible for me to be successful at work. I'm about to leave the 4th company in 3 1/2 years. Not a good track record. Guess I should take this to another section of the forum.

Andy

I try to stay in our bed, but the more I try and try "not" to think about my legs the worse they get. Andy
Hallelujah, amen, I hear you, brother. It's like that game "Spend the next 5 minutes not thinking about a hippopotamus."

I'm curious - how do the symptoms of RLS "develop"? I mean, do you have it since birth, with little infants and children kicking in their beds - or can you develop it later in adulthood? Is the onset sudden, or does it gradually start from nothing and get worse over months or years?I've never heard of anyone other than an adult having it, but I don't actually know.

I'm curious - how do the symptoms of RLS "develop"? I mean, do you have it since birth, with little infants and children kicking in their beds - or can you develop it later in adulthood? Is the onset sudden, or does it gradually start from nothing and get worse over months or years?I've never heard of anyone other than an adult having it, but I don't actually know.Diane, I've had this for as long as I can remember. Since I was a little kid I've had the same feeling in my legs. Wanting to stretch them out and when not able to do that move them. Happens more when I am tired which is why I was hoping it was a sign that I was overt tired. But, alas, I can sleep for a little bit then wake up peddling.

Maybe I should hook a bike up to a generator and get something usefull out of this. :-)

Andy

I first remember feeling the symptoms of RLS during pre-adolescence. It diminished over the years, but came back in full force when I was 30 and pregnant. Then I would have it right before my period.

Now it's back and worse than it's ever been. All of this makes me think that it must have some hormonal connection -- especialy interesting since I used to be my most ADD before my period. Now I'm just that way all the time.

(I apologize to all members for the frank gynecological content of this entry, since it is not in a forum clearly marked "Women Only." LOL)

DianeS,
"Related Posts" at the end of this thread can direct you to some more answers to your question.

I was diagnosed through a sleep study to have leg myoclonis. I found it referenced in some books as periodic leg movement. I don't have restless legs, but my legs jerk all night long without medication. The only thing I have found to work for it is Klonopin. I just think I'm putting my metabolism on a yo yo string now that I take adderall all day and klonopin at bedtime. Anyone else have leg movements with RLS?

I was diagnosed with RLS through a sleep study as well. I had never heard of RLS and was so relieved to hear that I had a valid medical reason for my leg issues. I had always felt like I had ants crawling up and down my legs. If I had to stand for any length of time my legs would begin to itch!! They would drive me crazy. One day I was waiting at the bus stop. It was summer, I was wearing shorts and sandals. Of course I was standing while I was waiting. My legs began to itch but I was too embarrassed to start and never end the scratching, so I did my best to ignore the intense feeling of the ants crawling. The bus made its way to our stop. As I made my way to step up onto the bus one of the passengers behind me stopped me to let me know I had ants crawling all over my legs!!!:eek:

I take Mirapex at night, my legs still have a bit of achiness but never the feeling of ants crawling on them. If I do ever feel anything crawling on my legs I check:) because I never want to find a big ole tarantula crawling around!!

Mine started as growing pains in my calves in childhood. It would be so bad that I'd cry. The pain is like a pressure/crushing feeling.

Some people say Iron makes it better, some say Calcium and Magnesium (Cal-Mag supplements) can help.

I was on Klonopin, but it gave me a car accident. (It works in our bodies for 24 hrs+ i later found out!)

Right now, my only pain relief is HOT BATHS to soak my legs, and CODEINE pills.

Question: I understand that Mirapex or the new drug out there (?Requip?) can help stop the movements. But do these drugs stop the PAINS in the legs? That is what makes my life miserable...sometimes they even hurt in the late afternoon, or mornings.

An update: I gave up caffeine -- I am now officially an ADD ditz. And clumsy. The RLS went away for a week and now it's back. I'm still waiting for the report on my second sleep study.

Jogging in place to the count of 120 helps sometimes -- and I stress "sometimes" -- which is something that was suggested by a fellow Forum member, but I can't remember who.

For me, yes. The Mirapex takes the pain and the movement away.

Help! Sleep doc wants to treat me for sleep apnea -- which according to what I've read, I don't have -- even though I have restless leg and my legs (according to my sleep studies) move an average of 15.4 times an hour.

Does that sound like a lot or does anyone know from their own studies or experiences that that's a lot?

He (doc) just keeps brushing me off when I try to tell him I have restless leg.

Apparently: Not all PLM is RLS. But RLS is almost always PLM, as it was explained to me. (eg some drugs can cause PLMs, for example.)

I have PLMs (calf pains at night + the Sleep Lab found "periodic limb movements" in my lower legs, on the sleep study recordings, but it is not "true" RLS, i was told.

My Sleep Doc told me that for true "RLS" there should always be "relief from symptoms when moving the legs". (I told him that I find exercise can make my calves more tired and get more achey/crushy/pressure feelings.)

My own sense is that RLS is what we say it is. If it disrupts our lives, sleep, ability to stay awake and pay attention, then it needs treating. Period. Arguing terms and words and labels just creates false divisions, in a sense.

Medicine makes mistakes all the time (eg lobotomy; Vioxx; women's cardiac surgery), and i trust my own research and readings more than any doctor, b/c i am internally motivated to find an effective treatment, in the subject field. My own GP had told me to "stretch" my leg. (Lame advice. Doesn't work.)

It is different when it really impacts our lives, and we have to live (read: suffer) with a symptom. We cannot afford to fool around with suggestions that are not based in research and don't work for us.

For me, now, it's hot leg baths and codeine at bedtime. I also take Calcium-Magnesium one day and 4 Iron pills the next day. Sometimes i take Oxazepam (Serax).

I haven't had very good followup, so I haven't had a chance to chase my sleep doc or GP down for Mirapex.

I've had restless legs periodically since I was in my late teens....Its the weirdest thing..it doesn't sound like its a big deal..but it sure can keep you awake half the night.

I don't know if this was mentioned but there is a pill specially made for restless legs (RLS) called Requip. If you mention it to the doctor, he/she should be able to start you on the 'starter pack'...

Greetings all!

I had been fighting with RLS for years, and have seen specialists from all fields, read countless books in physiology and neurobiology; Most recently "Mind Wide Open" by Stephen Johnson and "The Universe in a Single Atom" by the extremely wise Dali Lama.

Like a lot of you, I got to an expatriated point in my life. The RLS started not only bothering me at night, but began affecting me throughout the day. Thereby, really effecting my work performance. So, I decided to put a lot of study into the subject, which was in itself difficult due to my RSL issue. Upon reading texts and listening to seminars, I began to have doubts about some of the theories surrounding RLS. One of the earlier theories was, of course, a psycological illness and could be treated by meditating or preoccupation. I then learned to art of meditation. I must admit, it did help once I was able to train myself to focus on nothingness, but the RLS knew I was not meditating at work or sleep, so returned. At that point I, through meditation, proved to myself that it was not a psycological condition. I then decided to try acupuncture, which directly interacts with nerves and nerve endings. Coordinating with a specialist, I went to a late evening session. I have always been sceptical of this type of medical process, but was open minded (a very good state to be in when testing a theory). About 1 minute into the process, the RLS was completely gone! He had isolated major nerve centers....so OK, it IS physical. The nerves were still in an uproad, however, the signal of that argument was not reaching my concious mind.

Now after all my research, I found that Dopamine is a major player in regulating nerve behavior and the human 'reward or pleasure' centers. Opiates are created naturally by the brain to reward you when you have done something worth the reward...like maybe winning Manager of the Year. This reward system is boosted dramatically by artificial doses of Opiates, such as that found in Heroin, Vicotin, Codein, Lortab, etc...

I was now at a very comfortable point in understanding what may be going on. This next step, I suggest you just take my word for and do not attempt yourself.

In order to validate to myself what was actually going on in my crazed serotonin/dopamine world, I decided to fake a severe back strain to go on Lortab for 8 weeks. When I started on the Lortab, I felt my pleasure centers firing up and giving me a central whole feeling of well being. On day 2, my RLS disappeared completely! So, 7 and a half weeks of great sleep and a general feeling of well being would be about to come crashing down around me. You see, the second part of using myself as a lab rat was about to kick in...withdrawal. Now, I had never experienced withdrawal before, but understood the symptoms. About 12 hours after I seized taking the Lortab, I started to feel the symptoms. Shaking, sweating, tightness of muscles, complete lack of concentration, and you guessed, the worst RLS I have ever had in my left. I was ready to shoot myself in the head about 4 days into it. But, logic prevailed and I was happy to know that I believe I had targeting the RLS culprit...dopamine!

As most probably read, another theory is Iron deficiency. I take a regular quality multivitamin from GNC and have a healthy lifestyle. I believe if it were Iron deficiency and so much that it caused nerve chaos in my legs (whole body during withdrawal) then I would see some basic Iron deficiency symptoms as well, like sores in the mouth, thinning nails, etc... But I had absolutly no Iron deficiency and was proved by a complete blood panel.

So, what was my next step you ask. Well, to prove my own theory, I needed a type of Dopamine booster. I feel there are a lot of people out there that have this deficiency through natural genetics and/or environmental elements while growing through childhood where the chemical formations are at its purist development.

The next part, and most recent, is quite funny. First of all, one of the doctors I went to a year ago placed me on Zoloft because I was having mood swings. I have been on that for a year, and have no mood swings at all since. I do believe that my serotonin levels are lower that normal and inhibiting the uptake as helped build up a healthy supply. However, to my studies and testing, the serotonin has no relation to RLS. So, it is a year of being on the Zoloft meds and I return to the doctor and a wealth of knowledge and true life self inflicted experience. The office had me complete a series of tests which were basically focused on Mood Disorder, Attention Deficit, and Depression. It was discovered that I was very ADD! Which, solidified my theory of low dopamin levels as a whole. I indicated to the doctor that I believe I had low dopamine levels and also believe I had high Zeta levels (Brain waves that controlled concentration and attention measured on a scale of 1 to 5). I explained that my own theory is, for some reason, my nerves are attempting to do something systemically, but unable to complete the communication to the very basic animal brain functions located in our brain stems, so is manifested at the origin...which simply seems to start in the lower body area. For those with severe RLS, or withdrawing from Opiate addiction, it will start in the legs, but will spread slowly upward to arms and hands.

With a dopamine boost, or blocker per say, those levels build up in your system and ultimately feed your body properly. I have since been put on Adderall XR and the RLS symptoms have pretty much disappeared. Every now and then I feel it a tiny bit, but I believe over time that with subside as well. I sleep extremely well, I have turned my professional life completely around, and living a much more fulfilling life.

The Revered Dali Lama makes mention to the simple fact that we are all animals to an extent. I believe that, and further more, I theorize that we are animals living in an age not designed for animals. As animals we pick and eat what we want, which many plants have these boosts of dopamine as a basic ingredient. I plan on doing my own study as to the differential of RLS between vegetarians and carnivores...it would be interesting to see the results.

Please take this 'book' with a grain of salt because my medical history and yours will be different. And please, DO NOT do the opiate test...I did it for all of us and the withdrawal process was the worst experience of my life. Just take the results as informational thought and speak to your doctor before trying anything. For myself, I truly believe I had a dopamine deficiency that both hindered my focus and concentration for years, and provided me with those countless sleepless nights.

I hope my research helps at least one of you to overcome your illness and please email me if you have any questions.

Sincerely,

SMPayne.
(Armchair Theorist) :)

Oh man, RLS is so annoying.

Yes, opiates raise dopamine and thus relieve RLS symptoms, but it's not really a good long-term treatment because opiates have a rapid tolerance/dependency curve.

Personally, I take some dexedrine and go back to sleep ("go pill" indeed)... I could *never* relieve the symptoms by any amount of exercise. It's maddening. When I was running the symptoms would diminish while I was running, but as soon as I stopped, I'd just be tired and have RLS again...

RLS has more to do with the specific balance of different types of dopamine receptors in a certain area of the brain and brainstem than anything, according to the studies I read.

For treating RLS alone I'd suggest one of the long-acting ergot derived dopamine agonists like Requip, stuff like l-dopa just has too short of a half-life. However, I've found that if I take a proper amount of ADD medication I will very rarely get them (as ADD meds raise DA...)