PLMW - Or Jerky Legs

[debbluebird]

I actually found an article discussing PLMW, Periodic Limb Movements While Awake. This is what I have along with RLS. My Jerky leg almost always happens before I go to sleep, when I start to get sleepy. So, it prevents sleep. Once in awhile it will hit after I have gone to sleep, and will wake me up. It is getting so bad in my right leg, that my muscle at the top of my leg is sore most of the time. It sometimes jerks so hard, that it feels like my leg is going to be pulled off. It can be very painful at times. When I raise that leg, like to get into the car, I really feel that sore muscle. To the point where it feels weak. Tonight is a bad night. I am usually asleep by 10 pm. So when my leg starts around, 3 am, and I'm awake for awhile, then at least I have gotten some sleep before it hits. Some nights it can start much earlier. Then usually I can get some sleep afterwards. But tonight is unusual. I haven't been allowed to sleep at all. I had to take extra meds, so maybe I will get to sleep soon.
The other problem is that lately my CPAP isn't working properly, so I am not getting quality sleep. I guess that has been going on since August. So I am really tired. That is probably why my leg is worse.
Another sleep study is next week. Hope things get back to my sort of normal sleep. Regular people just don't get it.

[Polar Bear]

debbluebird, regular people definitely do not get it, they haven't a clue .... I'm talking about RLS.

I would say that I don't suffer from PLMs either awake or asleep, although I do have the occasional 'jerk' from leg, arm or shoulder when at rest, sometimes only 2 or 3 per day. My occasional jerk however is nothing like the severilty of which you speak and I'm sorry that you are having this inflicted upon you along with everything else.

Isn't everything so much more of a drag/burden/nuisance when we are weary and sleep deprived.
I hope your Sleep Study next week has a positive benefit.

[ViewsAskew]

That is one of the downsides of the opioids - they don't eliminate these movements. Mine are decreased with opioids, but they were gone with the DAs.

Glad you have a sleep study next week - I bet you are tired!

[sleepdancer2]

As far as your CPAP treatment, I think you getting another sleep study is a good idea, especially if your meds have changed since the last time. Do discuss the meds you take before you have the study. Without knowing all the details, I'll speak in general. Take what applies and leave the rest. Some meds can cause centrals, which can make treatment of OSA trickier, and the doctor needs to be current on the nuances. Add limb movements to that mix and it can get even more complicated. I'd suggest asking your doctor a few questions in advance. It may be you could benefit from a series of tests if one night can't capture all the variables.

Will you be taking your usual meds for the test? Otherwise how will they know the effects of those meds on OSA or possible CSA?
If a med makes you prone to centrals, could that make you more susceptible to pressure induced centrals from treating OSA?
If one alternates nightly meds used for RLS, what is the plan to figure out which med may be problematic?
If a sleep study is a diagnostic one (tested without CPAP), how can one be sure they don't have centrals when on CPAP?
Since PLMs tend to manifest more while on CPAP, how will they know what your legs do while using therapeutic CPAP?

For what it's worth, when my movements intruded into my wake time prior to sleep it was due to augmentation. Once free from augmentation they no longer move before dozing off.

Good luck with everything.

[debbluebird]

Thanks. First, I don't alternative any meds. They will also have me on the CPAP during the test. I've had PLMW from the very beginning, even before meds and before using CPAP. I get slight feelings of RLS, then the PLMs start. It can be any time if I am sleepy, 24/7.
I finally got an appointment with the Pulmonologist, but not until Feb. 19. My leg muscle just gets so sore from the jerking. He will address everything. I'm to take my CPAP machine with me. Will also look at lung function. I'm sure my mask hasn't been working properly. But I'm also interested in why my oxygen level is down during the day too.
Also, I would like to report that I am totally off of all sugar. It hasn't been long enough, but I am hoping that will help too. I'm down 25 pounds, and still loosing.

[debbluebird]

Sleep study is tonight. Had to drive through ragging snow storm to get here. We left very early. Took almost 2 hours to get here. Normally a one hour drive. Had dinner and did some shopping. Still arrived early. Now just waiting to get set up. Hope I sleep, at least some.

[ViewsAskew]

Here's hoping you are sleeping as I type!

[badnights]

I know the jury's still out on some dietary things, but eliminating sugar from the diet has to be a good thing for everyone. There are, I suppose, a few people who don't need to... but consider the impact sugar must have on the gut microbiome. There probably aren't many people who wouldn't benefit from cutting out sugar. Good move!
How did it go?

[debbluebird]

I didn't sleep much during the sleep study. My leg wasn't too bad, but she had the mask on tight. Then, when I finally did go to sleep, she woke me up. She said I was leaking. As usual, my mouth opens. Any mask that I have tried, leaks. It's enough of a leak, that I might as well not have it on. So she put a chin strap on me, that was also very tight. With those two things, plus all of the wires, I felt very claustrophobic and very uncomfortable. By 5 am I was done. I couldn't take it anymore. We ended the study.
Then I found out that after my husband dropped me off, he had some trouble. It's an hour drive in good weather. There was a terrible snow storm that night, and all night long. Someone ran him off the road. A tow truck had to get him out. It took 3 and a half hours for him to get home. Then the next morning, he had to drive back in more snow. But he made it. After we got home I took a nap for several hours. Then slept all night. Took lots of drugs, to make that happen. I was so tired.
Then later, after breakfast, we went to the oxygen place, that gets me my masks, etc. Tried on more masks. We finally found one that would seem to work. It is a gel mask. Also added some cloth to put on my face, so the plastic doesn't bother me. No one has ever suggested that. Well, that seems to be working. I'm not sure, but I think my chin is not going past the mask. I won't know until I turn in the chip in another month or so. I'm sleeping pretty good, plus my leg isn't too bad. About the same as usual.
Going well, not having any sugar. It will be interesting to see if anything else changes because of it.

[Polar Bear]

Lots of changes debbluebird - I look forward to hearing how this goes.

[badnights]

Well that's good, about the mask. A gel mask? I didn't know they existed. I will have to tell my father about them. He has the open-mouth problem too, My mother was supposed to be making him a chin strap, I don't understand why she has to do it, why couldnt the sleep clinic get him one, I wonder. They had one on hand for you?

Re your hubby, what an awful night. Thankfully he was OK!

[ViewsAskew]

So many people have the open mouth problem - hubbie had given up (Deb even made him a chin strap!). He finally found a full face mask that he really likes. It's very small - doesn't make him feel claustrophobic.

Hope the gel mask works for you, Deb.

Beth, my husband used to get chin straps through insurance. They didn't last, but he got them - does Canadian insurance cover such things, I wonder?

[debbluebird]

I don't like any of the chin straps that they make. They didn't work right for me. That's when I started making them. I don't use any now.

[debbluebird]

I think I am done with everything. I don't think that I'm supposed to sleep anymore. Every mask that I try leaks. I figure, why wear them. My sinuses are fried. My teeth are dried out. My memory is shot. I get nightmares when I do sleep, feeling like I can't breath. Being claustrophobic. RLS and PLMs are just getting worse. As lack of sleep increases, they increase.
There comes a point, when you say enough is enough. If I die in my sleep, so be it. I stop breathing about 90 times an hour, when I do sleep. That takes a toll on the heart. So at some point my heart will just stop. I never feel rested and I'm always tired. Either my legs keep me from sleeping or the drugs have me hyper alert. I'm sick of the drugs.
Right now, life isn't that great. Just waiting to die. At least then I won't be tired anymore.
I will probably feel better tomorrow, but I think that I am really done trying to fix everything.

[badnights]

Ann: I don't know. I have asked my mother but she gets distracted from answering by all the problems in her life so I have to pester (via email).

Deb: I know you will feel better tomorrow. There are always ups and downs. But it really sucks that nothing is going well tonight. Still - - -I'm encouraged to see that you still have your sense of humor! ("at least then I won't be tired anymore")

Maybe you need to take a break from giving a hoot, for tonight anyway. Later you can take another shot at making the mask stop leaking. All we can do is just keep doing our best. At least if we're doing our best, we can relax about everything else, because we're doing all that we can possibly do.

Warm hugs, Deb. I hope something beautiful happens to you today.