new diagnosis -periodic limb movements

[rbtgjns]

Has anyone been treated for periodic limb movement disorder? My latest sleep study reported PLM. Look up this and found that it is nocturnal myoclonus. The sleep doc. did not mention it (said that he did not need to see me again for a year) however the sleep study reported "with CPAP, frequent arousing periodic limb movement were seen". Apparently, I awaken when this occurs. PLM index is 14.9 per hour.

[Rebecca R]

There are quite a few posts about PLMD. Try doing a search of the forum.

Your doc may have decided not to treat you since you fall within the mild category. It is interesting he didn't go over the results with you. You said that the report used the word "frequent" which is the same word my doc used and I fell into the severe range.

Periodic Limb Movement Index (PLMI).

1. Mild: greater than 5 but less than 25 events per hour.
2. Moderate: greater than or equal to 25 but less than 50 events per hour.
3. Severe: greater than 50 events per hour.

I read somewhere that PLMI greater than 15 per hour is significant but they take other things into consideration when assigning the number.

[kteague]

with CPAP, frequent arousing periodic limb movements were seen

The way that is phrased makes it sound like limb movements were not seen until CPAP was used. Is that correct, that none were seen in the diagnostic portion of your study?

Not everyone who has limb movements has Periodic Limb Movement Disorder. Having movements appear or worsen with CPAP use would make me think of that possibility though. Did your test diagnose you as having PLMD? If it does not explicitly say that, I would call and ask the doctor specifically, "Do the limb movements seen in my study represent PLMD?" Another number besides the PLM index is the number of those movements that cause arousal. Those whose limb movments don't cause many arousals may choose to not treat their limb movements. Personally, if they are tolerable, I think trying some natural treatments first beats going directly to meds.

This would include testing your ferritin level and keeping it in the higher range of normal. My doc recommends exercise, and hot foot soaks at bedtime. Some report benefit from taking the "Night Calm" type supplements available OTC, or a blend that includes calcium and magnesium. Mine happens to also have zinc. Avoiding caffiene is a biggie for me. Some say just in the evening, but for those with RLS too, any time matters.

Here's the tricky thing about your results. If your movements appeared or worsened when adding CPAP, the quality and quantity of your sleep during titration can affect whether the true picture of your limb movement problem was really seen. Poor sleep during titration is common. Seems only logical that if adding CPAP revealed limb movements, then effective CPAP treatment after the adjustment phase producing a better quality sleep of greater quantity could result in a proportionate increase of limb movements. If after some time on CPAP your sleep is not restful, it would not hurt to get retested while sleeping with your machine and mask to get a better idea what you are dealing with.

I didn't look to see if your CPAP is data capable, but I consider that a MUST when dealing with another sleep disorder. You have to have some measure of the CPAP's effectiveness to know if continued problems are CPAP or limb movement related. I am a bit concerned that your doctor didn't feel a need to follow up on this. Maybe they are right, but without follow up, how will they know?

I don't know your sleep situation, but it could be helpful to know how active your legs are as you sleep. Best wishes as you move forward in getting your CPAP treatment working its best for you. Hopefully you will find that "Mild" is as bad as your limb movements are going to get. That's very possible, so don't prematurely despair - just be aware.

Kathy

Kathy

[Rebecca R]

Here's the tricky thing about your results. If your movements appeared or worsened when adding CPAP, the quality and quantity of your sleep during titration can affect whether the true picture of your limb movement problem was really seen. Poor sleep during titration is common. Seems only logical that if adding CPAP revealed limb movements, then effective CPAP treatment after the adjustment phase producing a better quality sleep of greater quantity could result in a proportionate increase of limb movements.
Kathy

So it could be possible that the OSA masked the PLMD? Makes sense if PLMD can mask OSA.

Hopefully you will find that "Mild" is as bad as your limb movements are going to get. That's very possible, so don't prematurely despair - just be aware.

Great advice. I don't wish PLMD on anyone. Inducing Severe PLMD/RLS on someone would be a good instrument of torture.

don't prematurely despair - just be aware.

[kteague]

Rebecca, keeping in mind I am speaking from experience and not as an authority, here's how I see it. OSA and PLMD are both conditions that cause sleep arousals. When they coexist, they vie for prominence, so whichever wins, the other is lurking in the background waiting for their chance to take center stage. Treating the prominent one allows the other to have its time in the limelight.

[harry33]

I was told that I was kicking in sleep during a sleep study, since I sleep alone I hadnt known

I gather that this problem can be reduces with careful CPAP presure adjustment

[DoriC]

I can speak to this since it's my husband who has OSA. Pre-diagnosis of moderate OSA with severe PLMD, I always noticed before that along with symptoms of snoring, then silence and gasping, there was also a lot of restlessness and leg movement going on as well with and without arousals. The sleep dr wanted to medicate him immediately but our Primary was reluctant and wanted to see what successful cpap therapy would do first. His leg movements occur rarely now and he does not require any medication.

[Hose_Head]

Rebecca, keeping in mind I am speaking from experience and not as an authority, here's how I see it. OSA and PLMD are both conditions that cause sleep arousals. When they coexist, they vie for prominence, so whichever wins, the other is lurking in the background waiting for their chance to take center stage. Treating the prominent one allows the other to have its time in the limelight.

This thread prompted me to go back and look at the results of my sleep study in Feb 2008, and the titration in March 2008. I recalled that my sleep doctor had said that I had a lot of PLM. The studies showed that my PLMI went from 36.7 in the sleep study to 50.4 during my titration. I`m not sure if this change is significant.

HOWEVER, at the time of my titration study, I figured that the PLM were just the result of the osteo-arthritis in my knees. They become painful if left in one position for too long. This pain can and does wake me up. And it causes me to move my legs a lot.

[kteague]

Hose_Head, I can tell how well my limb movements are doing based on my leg pain.

About limb movements in general, not all are due to PLMD. When one has OSA, the body can struggle to start breathing again, and all kinds of movement (including legs) can accompany that effort. PLMD is a diagnosis unrelated to OSA. Someone more knowledgeable can correct me if I'm wrong, but I don't think true PLMD goes away with OSA treatment. PLMD movements are rhythmic, repetitive, and stereotypical. Random dissimilar movements are not PLMD. Unfortunately, some sleep study reports do not make it clear what was actually seen.

[Rebecca R]

Rebecca, keeping in mind I am speaking from experience and not as an authority, here's how I see it. OSA and PLMD are both conditions that cause sleep arousals. When they coexist, they vie for prominence, so whichever wins, the other is lurking in the background waiting for their chance to take center stage. Treating the prominent one allows the other to have its time in the limelight.

Experience is sometimes authority. The so called authorities don't necessarily really understand what it is like.

What you describe is how it happened for me. Since my sleep issues are far from solved: I hope there is nothing else lurking back there???