Who on here has both RLS/WED and 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.
sleepdancer2
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Who on here has both RLS/WED and PLMD?

Postby sleepdancer2 » Fri Oct 17, 2014 6:33 am

Some stats I was reading said up to 80% of RLS/WED patients also have PLMD. Just wondering if that holds true with those who frequent this forum. While some of the same medications are prescribed for both, I was wondering what other PLMD patients are doing that might be different from those with RLS/WED alone.

For me, I am managing my leg movements with a TENS Unit. While that helps my legs, it doesn't stop what happens in the brain. While those symptoms aren't quite as severe, they have not gone away. The one thing that plagued my nights was what I call "stuck thoughts". It's like one phrase, one line from a song, one thought, just keeps maddeningly repeating like a broken record. The only thing that has helped that was keeping sounds coming into my brain so it would keep moving forward - if that makes any sense. I tried special sleep music, classical instrumentals, nature sounds but none worked. I needed words for the brain to process. Also found not just any music would help. Music I didn't really like was more of an agitation. In the end I settled on familiar oldies played at a level I could hear the words if I listened, but not loud enough to keep me awake. I think it is the familiarity with the songs that enables me to relax - I don't have to think about the words - they're already there. I find a distinct difference in this symptom when I have on the music vs when I don't.

Anybody else found something that helps them?
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Rustsmith
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Re: Who on here has both RLS/WED and PLMD?

Postby Rustsmith » Fri Oct 17, 2014 7:39 pm

I also have both WED and PLMS. Fortunately, my current DA medication has helped reduce the problems with both of them. The PLMS didn't bother me too much, but my wife finally had enough of all my movement at night and insisted that we change to a split king bed. So now we get to sleep together, but my movements are not transferred over to her part of the bed.

As for distractions, when I wasn't quite so bad I was able to use classical music to help me get to sleep. That may have worked better for me because I used to be involved with playing in both band and symphony. To me, the music is a form of communication so the melodies probably have the same effect on me that the words in the music have for you.

Unfortunately, the insomnia part of my WED is now severe enough that when it breaks through the medication, I have to get up and go work on my computer. Usually about 30-45 minutes of boring work but that requires close attention (transcription work) is enough to lull me back to a state work sleep is possible.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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ViewsAskew
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Re: Who on here has both RLS/WED and PLMS?

Postby ViewsAskew » Sat Oct 18, 2014 6:27 am

Fortunately the medication I take helps both.

I've had PLMS* since I was a toddler. I've had WED since I was a young teen. I sought help for the PLMS, which affected me much more than the WED. Of course, that was pre-augmentation and now they are equal demons.

I move very rarely with methadone. I'm not sure what I'd do if what I took for the WED didn't solve the PLMS.



*If we have PLMs and another sleep disorder of any kind, we don't have PLMD. This is only for folks for have leg movements in sleep and have no other sleep issues. Since we all have WED, we all just have PLMS - periodic limb movements in sleep or PLMW - periodic limb movement during wakefulness, or just PLMs - periodic limb movements.
Ann - Take what you need, leave the rest

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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: Who on here has both RLS/WED and PLMD?

Postby sleepdancer2 » Sat Oct 18, 2014 7:18 am

Looking for some official references on the diagnostic criteria. A sleep professional explained it to me several years ago on another forum but I'm having trouble finding the post. Their explanation led me to believe that there is a spectrum of limb movements and where one falls along that line is based on specific diagnostic criteria. Not everyone with PLMS will meet the diagnostic criteria for calling it a disorder. My sleep studies from several different clinics have all termed mine as PLMD. If I can find something official I'll come back and post a link. My memory certainly isn't a reliable source.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: Who on here has both RLS/WED and PLMD?

Postby ViewsAskew » Sat Oct 18, 2014 9:20 am

If you have Clinical Management of Restless Legs Syndrome, the definition is in there. But, I see it different on websites ALL the time. Leads me to believe that it's so little studied that many doctors don't even know the clinical definition!

I have the book on my desk - I use it pretty frequently to look things up for our members here....From the book, "To reach a diagnosis of PLMD, no other sleep-related diagnosis can account for the patient's complaint. Therefore, by definition, a patient with RLS cannot have PLMD." (second edition, 2013, written by Lee, Buchfuhrer, Allen, and Hening)
Ann - Take what you need, leave the rest



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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: Who on here has both RLS/WED and PLMD?

Postby sleepdancer2 » Sat Oct 18, 2014 8:40 pm

I did see one site that said specifically that RLS excludes a diagnosis of PLMD. I think you're right that the experts still have much discovery to be made on the subject. Other sites leaned more toward if another diagnosis could explain the symptoms. Now this is just me thinking it through, by no means an authoritative statement, but it seems if things like medication side effect, etc. could be causing the limb movements, it's not primary PLMD, which is more uncommon. But I thought when another cause was known it was still called PLMD, just secondary PLMD. Looks like I've got some reading to do. In my personal experience, my RLS/WED symptoms are totally different. They may have both had the same point of origin (who knows?) but I don't understand how RLS could be deemed responsible for the type of rhythmic limb movements needed to meet the criteria for a PLMD diagnosis. I thought RLS limb movements were random in response to sensations. PLMD movements are very patterned and stereotypical in nature. Since a person can have PLMD and not have WED at all, if they later developed WED that wouldn't invalidate their PLMD diagnosis would it? Just thinking out loud. Not understanding how RLS can exclude a diagnosis of PLMD. Not saying it doesn't - officially - just saying I don't understand. :) My many sleep studies have been at different labs with as many as 4 sleep doctors, 1 pulmonologist specializing in sleep, and 2 neurologists confirming the diagnosis - all alongside a concurrent diagnosis of RLS. It's confusing to me. Wish those supposedly "in the know" could be on the same page.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

sleepdancer2
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Re: Who on here has both RLS/WED and PLMD?

Postby sleepdancer2 » Sat Oct 18, 2014 8:55 pm

I looked up Dr. Buchfuhrer and thought about attending one of the support groups he's affiliated with, but saw it's a 2 hours bus ride from me. Oh well. :(
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: Who on here has both RLS/WED and PLMD?

Postby ViewsAskew » Sun Oct 19, 2014 4:43 am

There ARE completely different! And, I don't think they are saying that they are the same. They are just saying you do not have a sleep disorder of PLMD - you DO have PLMs. So, I think it's like this. You have WED, apnea, or any other sleep disorder. ALL of these folks can have these weird movements in sleep. It's sort of like a side effect or another symptoms or component of it, but different.

It's sort of like this. If you are diabetic, you likely don't get a diagnosis of neuropathy as a disease. You have diabetes and one of the issues that happens with it is neuropathy. But, if you have neuropathy and are not diabetic and have no other disorder that could be responsible for the neuropathy, you might have Small Fiber Neuropathy or some other kind.

And, for us, if there are NO other sleep disorders that could cause us to have these weird movements, we have PLMD. If we have a sleep disorder - of any kind - they the movements are not the same as our primary diagnosis, rather a by product or something that occurs with it.

Does that make any sense?????
Ann - Take what you need, leave the rest



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debbluebird
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Re: Who on here has both RLS/WED and PLMD?

Postby debbluebird » Mon Oct 20, 2014 8:32 pm

I have both. When I was young neither woke me up, but I was told my legs moved at night. I was in my 30's the first time the PLM's showed up during the evening. I had taken Sudafed. It was almost five years later before they started waking me up at night. I'm 63 now. I've gone through many drugs, and augmented on the DA. Now I take only methadone.

Bess
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Re: Who on here has both RLS/WED and PLMD?

Postby Bess » Mon Jun 15, 2015 10:27 pm

I think am one of the 20% who doesn't have PLMD (I haven't gotten this checked officially, but based on my experience and other people observing my sleep behavior, I'm actually quite motionless when asleep).

ViewsAskew
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Re: Who on here has both RLS/WED and PLMD?

Postby ViewsAskew » Tue Jun 16, 2015 12:10 am

My mom never moves, either, and she has WED My dad had PLMs, but not WED. My sister, brother and I move a LOT. When I was a toddler, no one would sleep with me. I remember sleeping with my brother - he was about 5 or 6 and I was a teen - and I wanted to kill him! Little did I know that he did to me what I do to others, lol.
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.

Betty/WV
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Re: Who on here has both RLS/WED and PLMD?

Postby Betty/WV » Sat Sep 05, 2015 5:13 pm

I have had RLS for years. Just had a sleep study, had 2 before. Have been on a CPAP about 5 years. This sleep study showed that I have SEVERE sleep apnea and VERY severe PLMD. I never thought I had PLMD before. Would like to find information on PLMD. Any advice? BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

ViewsAskew
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Re: Who on here has both RLS/WED and PLMD?

Postby ViewsAskew » Sun Sep 06, 2015 4:42 am

There isn't much out there to help us, Betty. Since you now have apnea, though, the PLMs may be caused by that. People with apnea often have severe PLMs. When treated, they often are reduced or stop.

The most important part about the PLMs was whether they awakened you. See if your doctor will tel you that. Many people have them but the movements do not arouse them from sleep. They may not be able to tell because you likely had a lot of arousals from the apnea.

Did they put a mask on you that night, or are you going back for another study where you test a mask? If you had a mask that night, you need to see if the PLMs dropped down once you had the mask on. If you go back, they should test to see if your PLMs are deduced and how often they cause arousal from sleep.

If the mask doesn't improve the PLMs and they awaken you, then a dopamine agonist, such as pramipexole (which I think you were taking) ias often prescribed. Sometimes benzos are used, too.
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: Who on here has both RLS/WED and PLMD?

Postby sleepdancer2 » Sun Sep 06, 2015 7:03 am

Hi Betty. I have OSA and PLMD. It can be a cat and mouse game if one counts on the sleep studies to answers their questions. I generally use this site for info on PLMD and www.cpaptalk.com for OSA issues. Do these disorders overlap in some ways? They sure do. When things in my life get complicated it helps my brain to bottom line as many elements as possible. My bottom line here is that the OSA is an "absolute". I have it. I treat it. And my machine reports to me that my treatment is indeed therapeutic. With OSA, it doesn't matter if I don't feel better, still don't feel good, etc.

Then comes the PLMD. If the sleep apnea is causing the limb movements, improvement can happen. However, if you've already been on CPAP for a long time, it seems your movements are likely independent of the OSA. Are you already doing all those things normally suggested to try and help your legs? (Ferritin near 100 and nutritionlly sound)? If you are already on a dopamine agonist, stay in tune for any indication you may be augmenting. I spent years suffering unnecessarily through augmentation. I found it hard to use my CPAP machine simply because during my nights I stayed extremely agitated due to the PLMD. I simply COULDN"T lay still and sometimes couldn't stand the mask touching my face. My legs have been controlled the past 4 years so my sleep is reasonably good now. Not perfect, but decent in comparison to years past. Good luck with all this.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Betty/WV
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Re: Who on here has both RLS/WED and PLMD?

Postby Betty/WV » Sun Sep 06, 2015 8:24 am

ViewsAskew and Sleepdancer: thank you so much for your input. I did have one sleep study without the mask and went back for one with the mask. They increased my pressure on my CPAP from 6 to9. And I have had my ferritin level checked, haven't got the results yet. Last time I had it checked it was 40. I am taking iron now. I have been on the CPAP for about 5 years. And I get awaken by something, because I don't sleep but about 2 hours at a time. I also have a hard time using my CPAP because I'm constantly waking up, going to the bathroom, can't go back to sleep and will be up for hours when I do get up. I emailed Dr. B one time and just briefly as I could explained all the things I'm dealing with.( BTW, I am on Mirapex, I was on 0.25 mg twice a day. I cut it down to 0.125 twice a day. I had a hard time doing that but it's ok now. Back to Dr. B, his answer to my email was that my case was to complicated for an answer from him, that I needed to find a good sleep doctor and possibly start all over. That's impossible in my area. I am going to a new neurologist, and she is the one that ordered the sleep study and the ferritin levels to be checked. I have only been to see her 3 times and so far I like her. I have a fear of augmentation, but I guess I will have to cross that bridge when I get to it. I am now 79, and have a multitude of health problems, arthritis, fibro, RLS/PLMD,etc. I have no life really. I have so much pain. I have had 1 knee replacement and need another plus shoulder surgery. Thanks for your kind concern. It really helps to have someone to talk to that understands. As, it seems, no one else has a clue. Thanks again. BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand


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