RLS with NO PLMD!

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
Bess
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RLS with NO PLMD!

Postby Bess » Fri Jul 03, 2015 4:21 pm

I've never had my legs move involuntarily. Not once. But apparently 80% of RLS patients have co-occuring PLMD, to the point where someone like me doesn't even qualify for research studies on RLS! :(

Do you think perhaps those with this type of RLS have a different disease altogether, just with the overlapping symptoms of restless legs?

Let me know if you too have RLS with no PLMD! I'm interested to hear, along with other details. Let's see if we can find some similarities.

Other details:
- Mine is highly episodic, coming in bouts throughout the year, sometimes 1 or 2 nights sprinkled in in the "good" months
- I get excessive daytime sleepiness even when (maybe even especially when) sleep quality has been good
- RGS :oops: and RLS that persists throughout the day. RGS/RLS occur simultaneously and seem to be daytime or around-the-clock symptoms when they hit
- ADD, inattentive type
- Insomnia, usually preceding RLS symptoms at night (bed at 11pm, insomnia until 2am, then finally BAM, RLS symptoms hit)
- Unexplained severe insomnia sometimes with no RLS symptoms that night
- Sleep problem is usually inability to fall asleep, but once asleep I rarely wake up. Sleep inertia every morning, could just keep sleeping and sleeping but I resist the urge.

Polar Bear
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Re: RLS with NO PLMD!

Postby Polar Bear » Fri Jul 03, 2015 8:15 pm

- I have had RLS 24/7 (legs, arms, shoulder) for 35+ years and am not aware of having PLMD/PLMS. My sleep partner has never seen me behave in a way while sleeping that would indicate I have PLMS.

- Insomnia is a major issue in my life and I'll be up and about 3 or 4 times nightly for more than an hour at a time, even though I use a sleeping medication. Initially usually fall asleep after reading for an hour or so but don't stay asleep.

- I certainly find it difficult to sit about and relax, and generally will be multitasking. When watching a movie on tv I'll also have another task on hand, sewing, sorting paperwork, sudoko etc. etc.


Edited: 5 July 2015
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Yankiwi
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Re: RLS with NO PLMD!

Postby Yankiwi » Sat Jul 04, 2015 3:17 am

I have RLS in my legs only. It's chronic, every night. If I'm careful I can prevent having symptoms in the daytime but get them if I sit for too long. I don't have PLMD.

ViewsAskew
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Re: RLS with NO PLMD!

Postby ViewsAskew » Sat Jul 04, 2015 3:26 pm

Until I had augmentation, I never felt or was conscious of PLMs. They happen during sleep for the majority of us. PLMW - PLMs during wakefullness - are not very common at all! Now, I learned as an adult that I had them and then it made sense that my family said I was a wild child in bed and that my covers never stayed tucked in. But, even after bed partners told me I kicked, I still couldn't tell I had them.

And, at least 20%, according to research, of people with RLS/WED do not have any PLMs.
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.

sleepdancer2
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Re: RLS with NO PLMD!

Postby sleepdancer2 » Sat Jul 04, 2015 8:19 pm

I'm in the same boat as ViewsAskew. Because by their very nature periodic limb movements of sleep happen during sleep, one might not be aware of them until they are severe enough to wake you in the middle of a movement. I too became aware of the movements once augmenting on a med, although I had diagnosed in a sleep study and been treated for years. Unless one has a sleep partner who can definitively say you don't move at night or have videotaped during sleep, only a sleep study can say whether one has or doesn't have PLMS. There is a range of classifications for limb movements. One can have an issue with limb movements yet not meet the diagnostic criteria for PLMD. Even with a sleep study, anyone with sleep apnea can have a sleep study and have the limb movements masked by the apnea events. The flip side of that is true too.

Ironically, once my PLMD became controlled and I was off the dopamine meds, my RLS symptoms are dramatically reduced.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Bess
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Re: RLS with NO PLMD!

Postby Bess » Mon Jul 06, 2015 2:44 pm

My sleep partners from now and the past say that although I do grind my teeth they've never noticed any movements when I sleep, even during REM at which point many normal people will twitch... in fact when I'm in deep sleep I tend to be very still. This has been corroborated by motion-tracking apps like Sleep Cycle Alarm, wherein I'll have these long periods of time with no movement. So unless the PLMD movements are really really subtle, I don't think I have it.

For those who do have PLMD, have you ever tested your nighttime movements with these Sleep Cycle tracker apps? It'd be interesting to hear what the results were.

ViewsAskew
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Re: RLS with NO PLMD!

Postby ViewsAskew » Mon Jul 06, 2015 10:11 pm

Yeah, I have. It shows I'm in light sleep a lot of the time - sometimes for 45 minutes or more at a time. I never get through a 90 minute period without light sleep in the beginning, middle and end of the cycle.
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.

Polar Bear
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Re: RLS with NO PLMD!

Postby Polar Bear » Tue Jul 07, 2015 12:39 pm

I am also a grinder, my husband has woken me up on occasion for fear that I would cause severe damage to my teeth/jaw !
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

sleepdancer2
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Re: RLS with NO PLMD!

Postby sleepdancer2 » Wed Jul 08, 2015 2:49 am

I would be really interested in experimenting with one of the sleep trackers but it's not in my budget. Especially since I'm going a few nights a week even off the TENS Unit I have to wonder if it is affecting my quality of sleep. Are those devices very expensive? I wouldn't know how to select a good one.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: RLS with NO PLMD!

Postby ViewsAskew » Wed Jul 08, 2015 3:49 am

I've just been using my phone with an app. It does NOT measure as well as a good device, but most of the devices are no longer available, unfortunately. I have wondered how well a FitBit or similar device would work, but have a feeling it wouldn't capture too much more.
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.

Bess
Posts: 21
Joined: Tue Jun 09, 2015 9:08 pm

Re: RLS with NO PLMD!

Postby Bess » Fri Jul 10, 2015 2:42 am

sleepdancer2, I use a free App on my iPhone 4 called Sleep Time. It's sensitive enough to pick up on little movements I think and they have a way of testing it out while your awake to see if certain movements register. I usually keep it next to my pillow... maybe I should put it down next to my legs for a night just to be sure.


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