Introducing myself, and questions

[slcampbell]

Hi,
I actually joined this board over a year ago and read some posts, but never posted until now. I'm still not sure whether or not I actually have RLS.

In the fall of 2009, my pulmonologist sent me for a sleep study. In the morning, the tech guy said, "Whoa! Do you always move your legs like that?" I had no idea what he was talking about, I'm not aware of moving my legs at all while I sleep. When the Doctor went over the results, he said I have some mild sleep apnea, but the biggest concern was big leg movements that happened right before I roused then went back to sleep several times. He said it was RLS and prescribed Roprinorole.

I did feel a lot more rested after I started taking it, but I have never really been aware of excessive leg movements. I sleep with a partner, who has never complained of being kicked or wakened by my movements. Anyway, a few months ago, my prescription ran out and I didn't want to go back to the specialist to renew it, because I wasn't even convinced I had a problem and who wants to take unneeded medicines with possible side effects. So, I kind of tapered off the Roprinorole.

Now, I'm back to feeling exhausted practically all the time, no matter how much I sleep. So I'm wondering if I had RLS after all. I have an appointment with my primary care doctor in a couple of weeks, and I plan to ask her about it. What I'm wondering is: can you have RLS to an extent that seriously reduces the quality of your sleep, and have very little pain from it or awareness of moving? Sometimes when I lay down, my legs feel like I can never stretch them enough, like I want to put my legs in a medieval "rack" and stretch out the kinks. (Sounds weird, I know.) But this is only sometimes - not all the time. Usually when I drink too much ice tea. Once or twice, I've had to get up and try walking. A few times, I've moved to the sofa so I can push my feet against the arm rest on the other side, but this is not all the time. The main part of my problem seems to be something I'm completely unaware of (apart from feeling exhausted). Is this possible?

Thanks, Stephanie

[sleepdancer]

Did your sleep study mention PLMD or Periodic Limb Movement Disorder? PLMD causes frequent movements which will be stereotypical in nature (be similar) and repeat at patterned intervals. A person can have this and RLS. Movements from PLMD can present as a repeated big toe flexion, to foot movements, to kicking, to wild flailing. For some they are not readily apparent to the sleep partner. The issue is how many of the movements cause arousals, or disrupt your sleep patterns. RLS and PLMD are often treated with the same medications. I happen to use a TENS Unit for mine and no longer take meds for my legs. Caffeine and some meds aggravate mine. Just a word of caution... If you showed mild sleep apnea in a study with lots of limb movements, there's a good chance that when your legs are quieter you apnea increases in severity. And the flip side of that is if you had not had the apnea events, your movement count would likely have been more. If you diagnostically met the criteria for mild sleep apnea (> 5 events per hour), that alone would merit treatment without considering at times it is likely worse. It can be like playing cat and mouse when one has both limb movments of sleep and sleep apnea. The way I see it, if sleep apnea is a known factor, its treatment is direct and measurable and to me is a logical beginning. Controlling the legs may be a long and winding road, but at least you could know your body and brain is getting the oxygen it needs to keep many potential other health issues from arising due to the apnea.

[Chipmunk]

Yes, you can have movements and not be aware of them. During my sleep study I woke myself 143 times. My husband has only complained of me hogging the covers, although we have a king-size bed so he may just be too far away to get kicked LOL.

[ViewsAskew]

Yes, you can have movements and not be aware of them. During my sleep study I woke myself 143 times. My husband has only complained of me hogging the covers, although we have a king-size bed so he may just be too far away to get kicked LOL.

My hubbie never noticed mine because he fell asleep in 2 seconds and slept soundly; we also have a King bed. It was only a few time that he came to bed after I did for some odd reason that he finally noticed it.


I find it odd that a reputable sleep place would call it RLS, however. Technically, RLS/WED happens while awake and PLMs (periodic limb movements) happen while asleep.

Interesting tidbit: " To reach a diagnosis of PLMD, no other sleep-related diagnosis can account for the patient's complaint. It is a rule that leg movements, even if periodic, are not considered to be PLM if they are associate regularly with respiratory disturbances, such as sleep apnea" Source: Clinical Management of Restless Legs Syndrome.

Scampbell, I wonder if the movements are part of the apnea? Do you use a C-Pap or Bi-pap machine?

[Chipmunk]

Ann - my husband falls asleep in 2 seconds as well! Drives me nuts! As far as the diagnosis, I'm not certain what they technically classified it as, but she told me I had RLS and the goal was to treat that. From what I saw of the sleep data, my movements were not periodic, nor were they the same movements repeated - it was more like my body trying to get comfortable all night long. In any case, treating the iron and vit d deficiencies has really helped the night movements, whatever they are, although now that I had to go back on Citalopram I feel like I am back to square one.

[badnights]

slcampbell
when I first was diagnosed with WED (new name for RLS is Willis-Ekbom Disease) it was after a year of going to my GP and internists, taking a billion tests trying to find out why I was always tired. That was my primary complaint, being exhausted all the time - yet when I tried to nap during the day, unable to function any longer, I often couldn't. I did wonder if my sleep was not up to snuff and mentioned that the main reasons I woke up at night were, in order of frequency: 1. being dragged up out of sleep for no apparent reason despite being exhausted, 2. twitchy legs, 3. need to pee, 4. noise.

The last internist I saw looked at all the negative results, and suggested that my "twitchy legs" were the cause of ALL my distress. I found it hard to believe, but looking back on it now, it's obvious. The awakenings for no apparent cause were the beginnings of an RLS episode, because if I just lay there, my legs would go within a minute or so. So reasons 1 and 2 for awakening were both RLS. Add to that the lack of deep sleep that often accompanies RLS and that accounts for 3 and 4. ( I didnt' wake up to pee, really I just peed because I was awake.)

so I don't think it's unreasonable that you have WED/RLS and your main complaint is being tired. Your description " ..Sometimes when I lay down, my legs feel like I can never stretch them enough, ..... A few times, I've moved to the sofa so I can push my feet against the arm rest on the other side" is very RLSy. Your concern is that is doesn;t happen all the time, yet you're tired all the time. As sleepdancer said, you might have disruptive PLMs as well. when they get to be that disruptive, the medication is the same as for RLS.