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Re: My new Relaxis

Posted: Fri May 05, 2017 5:43 pm
by ViewsAskew
Beth, I wonder if I could order it for you and then ship it to you. It won't be cheap to ship across the border, of course, but you would get it.

Re: My new Relaxis

Posted: Fri May 05, 2017 9:26 pm
by legsbestill
That's what I did. My aunt in Los altos took delivery of it from Relaxis and then shipped it on to me. Am just thinking I may have forgotten to pay her for the shipping :-(

Re: My new Relaxis

Posted: Sat May 06, 2017 11:48 am
by badnights
Ya that would make sense. I could order with a shipping address to your house. Not sure if they would notice that it's not the address on the prescription, though. I'll PM you.

Re: My new Relaxis

Posted: Tue May 16, 2017 6:44 am
by leggo_my_legs
legsbestill wrote:I am not sure I really understand what is the difference between PLMS and the urge-to-move symptom which I get which is a direct response/culmination of the awful creepy, crawly sensation that emanates from the small of my back and travels down my legs. I mean the sensation itself is awful and wakes me up on its own account but it inevitably leads to the twitch of the legs which I assume christened the condition Restless Leg Syndrome. I have sort-of lazily assumed that PLMS is something different because otherwise what is the point of calling one RLS and the other PLMS. If they are different, I don't suffer from PLMS.


I will add my 2 cents, I think I can speak to this a bit, because on occasion I have RLS when I'm awake, but my primary difficulty is PMLS. With the PMLS, I don't actually have a sensation because I'm asleep. When I watch myself on video, my PMLS movements involve a lot of flexing at the ankle or moving my heel on the sheet. At times my legs have shifted position, such as bending at the knee. Per the sleep lab, the PMLS wakes me up, but I'm not aware of it waking me up, other than feeling like hell in the morning. :twisted:

By contrast, for me, the RLS movements are larger motor movements and are jerky, fast, and volitional, but almost uncontrollable, like shaking out the sensation.

Re: My new Relaxis

Posted: Tue May 16, 2017 9:30 am
by ViewsAskew
leggo_my_legs wrote:
legsbestill wrote:I am not sure I really understand what is the difference between PLMS and the urge-to-move symptom which I get which is a direct response/culmination of the awful creepy, crawly sensation that emanates from the small of my back and travels down my legs. I mean the sensation itself is awful and wakes me up on its own account but it inevitably leads to the twitch of the legs which I assume christened the condition Restless Leg Syndrome. I have sort-of lazily assumed that PLMS is something different because otherwise what is the point of calling one RLS and the other PLMS. If they are different, I don't suffer from PLMS.


I will add my 2 cents, I think I can speak to this a bit, because on occasion I have RLS when I'm awake, but my primary difficulty is PMLS. With the PMLS, I don't actually have a sensation because I'm asleep. When I watch myself on video, my PMLS movements involve a lot of flexing at the ankle or moving my heel on the sheet. At times my legs have shifted position, such as bending at the knee. Per the sleep lab, the PMLS wakes me up, but I'm not aware of it waking me up, other than feeling like hell in the morning. :twisted:

By contrast, for me, the RLS movements are larger motor movements and are jerky, fast, and volitional, but almost uncontrollable, like shaking out the sensation.


To add to this...RLS is considered the sensation that makes you want to move, so you move. But, many of us find that if we do not move, our bodies move anyway. But, it is in direct response to the sensations and technically, we are moving ourselves.

PLMS are involuntary and rhythmic. As leggo noted, they occur at a joint - toe, ankle, knee, hip. The movement lasts a second or so and the technical description includes time parameters.There is no sensation to precipitate them tat we know of. You flex from the joint then release. As you can imagine, toe and ankle movements are much smaller than those originating from the hip or knee!

A few examples:
https://www.youtube.com/watch?v=3xvmdOb1aOQ
https://www.youtube.com/watch?v=LnfgUlY4v2g
https://www.youtube.com/watch?v=b9R9vqKKJhc

Re: My new Relaxis

Posted: Thu May 18, 2017 4:28 am
by leggo_my_legs
Ann--thanks, that was exactly what I was trying to say but you clarified it even better!

Re: My new Relaxis

Posted: Thu May 18, 2017 5:11 am
by ViewsAskew
leggo_my_legs wrote:Ann--thanks, that was exactly what I was trying to say but you clarified it even better!

:thumbup:

Re: My new Relaxis

Posted: Thu May 18, 2017 3:24 pm
by sleepdancer2
Often those with periodic limb movements during sleep are unaware of their presence until reported by an observer or bed partner. Instead the sufferer just knows their sleep feels restless, or their bed is messy, or they think they just change positions a lot. When a movement does wake us, it is often as a movement is ending and it's hard to distinguish that from a position shift. My time of augmentation on Mirapex caused the movements to encroach upon my semi-awake time. It was then I became aware of sensations preceding the jerks or contractions. Mine was a tightening sensation that I liken to a twisted rubber band before it releases. Depending on the doctor, a sleep study may not label periodic limb movements as a disorder if another sleep disorder is present. I've found from reading here that one vein of thought is to not label them PLMD if another disorder is also present. My doctors have not been of the same school of thought as mine have always been called PLMD. No matter what the label, if the movements are stereotypical and rhythmic, they have the same effect on sleep.

Re: My new Relaxis

Posted: Fri May 19, 2017 5:51 am
by leggo_my_legs
sleepdancer2 wrote:Depending on the doctor, a sleep study may not label periodic limb movements as a disorder if another sleep disorder is present. I've found from reading here that one vein of thought is to not label them PLMD if another disorder is also present.


I'm so glad mine were labeled. My other sleep disorder is sleep apnea. Having the additional diagnosis, while difficult and disappointing, has also given new hope for better sleep, if I can get the blasted things under control. It was very validating to know that something else was wrong.

Re: My new Relaxis

Posted: Fri May 19, 2017 9:30 am
by badnights
Depending on the doctor, a sleep study may not label periodic limb movements as a disorder if another sleep disorder is present. I've found from reading here that one vein of thought is to not label them PLMD if another disorder is also present.
A sleep study done properly will always count periodic limb movements and calculate an index of movements per hour. If the index is greater than a certain number AND the patient has a related clinical complaint like daytime sleepiness AND this complaint is not explainable by another disorder, then a diagnosis of the disorder, PLMD, is made. If there is another sleep disorder present, like WED/RLS or sleep apnea, then the patient cannot, by definition, also have PLMD, even if the index is very high and the PLMS (periodic limb movements in sleep) is very disruptive.

I agree, that definition can belittle the importance of PLMs (periodic limb movements) in disrupting sleep, especially where one or more other sleep disorders are present but mild and the PLMs are severe.

Re: My new Relaxis

Posted: Fri May 19, 2017 3:16 pm
by yawny
I had my first sleep study last October at the best hospital in the city and my neurologist diagnosed PLMD only. I asked him about this because I also have RLS, and Benign Fasciculation Syndrome (what are we? chopped liver!) and he said that "for our purposes, you have PLMD." I kind of get it. My RLS became mostly mild once I started magnesium and iron. From what I can tell, BFS gets no respect and is not taken seriously even though mine is as disturbing as the PLMD. But it seems as though my diagnosis is incomplete and for some reason that bothers me.

Re: My new Relaxis

Posted: Fri May 19, 2017 7:45 pm
by ViewsAskew
I have had mild fasciculations and they are so annoying! To have them all the time would not be fun. I used to get them more - haven't had them in years...knock on wood, lol!

Re: My new Relaxis

Posted: Sat May 20, 2017 3:39 pm
by legsbestill
Yawny, it is really no help to you at all but at an instinctive level purely, it does sound to me as if your diagnosis is incomplete. Like some piece of the jigsaw has been left out of the box. I can see how that would exasperate.

Re: My new Relaxis

Posted: Sun May 21, 2017 4:56 am
by badnights
I can understand that feeling, too. The diagnosis is limiting; it discounts a real problem.

For some reason I am reminded of my frustration with the conventional wisdom that WED sensations don't wake us up. I have no idea how that came to be conventional wisdom, because it has never seemed true to me, and having doctors think it true makes them fail to appreciate the full impact of WED.

Re: My new Relaxis

Posted: Sun May 21, 2017 5:49 am
by ViewsAskew
badnights wrote:I can understand that feeling, too. The diagnosis is limiting; it discounts a real problem.

For some reason I am reminded of my frustration with the conventional wisdom that WED sensations don't wake us up. I have no idea how that came to be conventional wisdom, because it has never seemed true to me, and having doctors think it true makes them fail to appreciate the full impact of WED.


I am 100% positive it is not true. I can tell when I am in either stage 1 or 5 sleep positively. In 1, I am still aware enough to feel the sensations and know I am moving. I try to stay asleep, knowing that it will not work. In REM, I can tell because just as the need to urinate or vomit becomes part of your dream, my movements do. The movements are in my dreams, as is my prone mattress dance. This eventually takes me to stage 1, where I realize I am not going to overpower it and I have to wake up completely.