Restless Legs Syndrome (RLS) Discussion Board

Had a sleep study and they said I had about 24 leg movements per hour that significantly effected my sleep. I have WED too, but it's not as bad now that my iron is up. I'm wondering if the things on this board that help WED symptoms will also help PLMD. Does anyone have experience with helping PLMD naturally...not a lot of info out there. Of course, I'll try everything anyway, but it would be great to have some direction as I go... Thanks so much!

mama.liz07 wrote:Had a sleep study and they said I had about 24 leg movements per hour that significantly effected my sleep. I have WED too, but it's not as bad now that my iron is up. I'm wondering if the things on this board that help WED symptoms will also help PLMD. Does anyone have experience with helping PLMD naturally...not a lot of info out there. Of course, I'll try everything anyway, but it would be great to have some direction as I go... Thanks so much!

In terms of pharma, Gabapentin has been proven effective. Sedative-hypnotics are often used - think valium, clonazepan, and so on. And, dopaminergics. So, it's very similar to how we treat WED/RLS.

There is, as you noted, very little, if any, information on treating these in other method than pharma. That's probably because we can't really tell what makes it better on our own. We can tell if we have WED - we're awke and have a STRONG urge to move. But, sleeping? We rarely are aware of microarousals. And, there is little to no financial gain to find a non-pharma method. As shown by the history below, they are sort of a secondary condition - not a primary one - so treating the primary issue usually resolves them. So, there is little reason to figure out how to treat them - treat the primary condition, and they usually stop, too.


History of PLMS, PLMD, and so on....
Originally, they called this myoclonus. 15 or more years ago, they realized that it wasn't myoclonus (but some people still call it that). Next, they told us we had PLMD. But, researchers soon realized that these movements are sort of a side effect or additional symptom of many different disorders - WED/RLS, Apnea, ADHD,narcolepsy, heart failure - and many more. Because it's so prevalent, it was decided that these are NOT a separate disorder, as originally thought. For a diagnosis of PLMD - the disorder - you cannot have ANY other sleep disorder or respiratory problem. So, we have PLM, PLMS, or PLMW - but not PLMD.

Interesting. Thanks for the info. My sleep breathing? score was a 2...they said 5 was needed to diagnose apnea. And I do have WED/RLS, so I guess I'll just focus on treating the WED and maybe look at other causes of PLM's to see if any of those match. Want to avoid meds if I can...

Ann, so I'm confused. I get the leg jerks while I'm awake just after the WED starts. Or it can happen while I'm asleep after the WED starts. So which one is it called ? I used to think it was all one thing until I came to this site. It makes me more crazy than the WED.

debbluebird wrote:Ann, so I'm confused. I get the leg jerks while I'm awake just after the WED starts. Or it can happen while I'm asleep after the WED starts. So which one is it called ? I used to think it was all one thing until I came to this site. It makes me more crazy than the WED.

I think there are two types of leg movements - one of which isn't really recognized by the literature.

Type A. You get a sensation. It builds. It's really uncomfortable, but you don't move. Soon, your leg jerks. It may jerk several times in a row - it stops jerking when the sensation or strong urge to move has dissipated. For me, the muscle is what is jerking - usually my thigh. PLMs originate at the joint - toe, knee, hip with an upward flexion - so, think foot moving from the ankle, with the toes moving upward. That's the movement that occurs with PLMs. These jerks aren't the same. I think that these jerks are part of WED - but I don't see them discussed in the literature ('cus they say there is no movement with WED, just the sensation and the urge). They aren't PLMW because they don't meet the criteria of being rhythmic,of the flexion, and if you moved instead of being still, they wouldn't happen.

Type B. You are sleeping. Your body part - it can come from the toe, ankle, knee, hip, eblow or shoulder - moves with the rest of the limb following. The movement lasts between .5 and 10 seconds. The period between movements is at least 5 and not more than 90 seconds. So, every 5 to 90 seconds, it does it again. You have to have at least four of these movements in a row. These are PLMS - periodic limb movements in sleep.

Type C. You are awake. You do or do not have WED. You do or do not have the sensation to move (so it might be that you feel you need to, but it's not related - and it's hard to tell them apart). You might be walking or doing yoga and not have a strong urge to move at all. Yet, your body part moves. And it does so every 5 to 90 seconds, several to many times in a row. This is PLMW - periodic limb movement during wakefulness.

And, none of us have PLMD! It's nice not to have another disease or disorder, lol.

Does this make any sense?

Ok, then I have type A. If you put your hand on my thigh you can feel the muscles moving, causing the leg to jerk. But this happens to me awake or asleep. They start more mild, come every 3 seconds or so and increase in intensity if I don't get up. If I am having pain in a joint that seems to trigger them. So then is it called just PLM ?
Thanks

debbluebird wrote:Ok, then I have type A. If you put your hand on my thigh you can feel the muscles moving, causing the leg to jerk. But this happens to me awake or asleep. They start more mild, come every 3 seconds or so and increase in intensity if I don't get up. If I am having pain in a joint that seems to trigger them. So then is it called just PLM ?
Thanks

I honestly don't know what Type A is called - it doesn't exist in the literature. When you can feel muscles moving (and several members here can), it's different than WED and it's not PLM. But, it seems to happen hand in hand. Are these fasciculations? Maybe this is what happens when a PLM happens at the same time as WED - so you can't really separate them.

The difference between Type A and PLMs is the following (at least as I understand it): PLMs have no associated muscle movement prior to occuring. The leg is relaxed. Then a jerk that occurs that originates from a joint - such as the ankle. The part of the leg below the joint (say, your foot) jerks forward in a smooth movement, gets rigid for a moment to several seconds, then releases and relaxes.

To see what this looks like, reach your arm in front of you, palm facing up. Now, quickly flex your elbow and move your hand toward your face (don't hit yourself in the head, lol). Hold that for a bit (say 1-3 seconds), and release. That is essentially what a PLM looks like. Imagine you are laying down on your side in a semi fetal position. Your knees, then, are bent. Now, imagine that your leg, from the knee down, just straightens on its own, stays taut a moment, and relaxes. That's a PLM.

When I sleep with my husband, I actually scratch his leg with my toenails if I don't keep them short. When my leg flexes forward and I'm facing him, my nails catch the lower part of his leg.

And, yes, the correct term is just PLM if you are talking about any kind of them.

PLM - the rhythmic jerk from the ankle, knee, hip, shoulder, or elbow are called. Covers any type below. You add the letters below if you want to differentiate.
PLMs - more than one jerk - as in, "I had PLMs last night."
PLMS - jerks that happen while sleeping
PLMW - jerks that happen during wakefullness

ok, I just know that my thigh muscles feel like they are in knots and makes my leg jerk. The muscles feel like they are contracting. When I was augmenting with the Mirapex a few years ago, my leg came off the bed a foot with each jerk. All I know is it's miserable. It's not really painful, yet it makes me crazy. My husband says it can sometimes take 10 minutes or so when I'm asleep for it to wake me up. Of course I'm always drugged up.
I've about decided that this a terminal illness. It will never go away and it will always keep me from sleeping. The only reason that I'm sleeping now is that I'm taking the Vicoden with the Methadone. I will run out in 3 or 4 days. I was hoping that with the hip replacement, the inflammation would calm down and the jerking calm down. It still might after everything heals. Sometimes I feel very discouraged. I know the doctor won't give me anymore Vicoden. I will probably go and fill the script for the Neupro patch next week when we go into town.

Well, it's been 6 months since I wrote the above statement. I had my second hip done since then. This is what has happened to my PLMs. They are milder. They don't continue to ramp up, getting stronger and stronger, until I have to get up. They do a little, but they are just not as strong. I can actually tolerate them most of the time. This is what I've been doing. They usually hit after I have slept three or four hours and have gotten up for a bathroom break. This is the same thing that they used to do. But now after I get back to bed, I bend my knee, placing my foot on the bed, knee in the air. I don't have a foot board on the bed to be able to push on. I usually only raise only the leg that is affected and I go back to sleep. They stop for some reason. I wake up later to put my leg back down. I don't know why I don't do that in my sleep. In this game, you do what works.

Anything that works gets my vote.

I find the leg raises work really well for breakthrough, too. Both PLMs and WED.

When it's really bad, I lie on my side, and bend the top leg bent so the foot is on the bed by my knee. Then I lift up the leg that is on the bottom - it's really hard to do! But, it works the muscles so hard that unless its the type where I have to get up anyway, that I can go back to sleep.
.............../\
............. / ..\
________/.....\
_________ ___________ (lift me)

Does that make any sense, lol? I had to use dots to make the spacing work right. Just

Yes, I bend, stretch and flex my muscles too. I did that last night and they went away. Before when my were really bad it wouldn't work.

views you're hilarious. I found the drawing more confusing than the explanation, but also more entertaining!
so you work your - adductors? the same muscles that pull your leg from the side to the midline?

badnights wrote:views you're hilarious. I found the drawing more confusing than the explanation, but also more entertaining!
so you work your - adductors? the same muscles that pull your leg from the side to the midline?

YES!