OT: It's those pesky limb movements again!

[kteague]

Those I've happened to talk to in chat or by PM might know my limb movements have been giving me the blues again for quite a while. I can only stay in bed for 1-3 hours and the entire time is pretty miserable, as I am beyond restless - more like fitful and agitated and in a lot of pain. I find it ironic that I can sleep for 3-5 hours without any leg problems or wakeups when in my recliner. If I do wake up for any reason, I can go back to sleep for another 2-3 solid hours. I used to take for granted that my movements were coming from a problem in the brain with the dopamine receptors. After all, in the years right before my leg problems started I had been in a chemical accident and inhaled a scary amount of fumes. Anything could have happened. But I'm starting to wonder if the difference in me lying flat or being nearly upright in the recliner could mean my issues are due to nerve damage somewhere between the brain and my legs. I've had several pretty severe neck and back injuries during my life (between unruly horses and unruly men). A couple nights ago I sat up the video camera and filmed my busy legs while sleeping (again). I'm scheduled to see my ortho doc soon because of all the hip, back and knee pain, and I'm going to show him the video and ask his opinion. My limb movements have been treated by a pulmonologist, an internist and a neurologist. Why not give the ortho guy a chance at it?

Anyhow, in all of this I have found a bit of humor. For those who don't know, I have RLS and PLMD. The very nature of PLMD is that the movements are repetitive and rythmic. (I have nicknamed myself Sleepdancer.) Well, tonight I ran across an old video by Gloria Estefan singing Rythm of the Night. The words to the verses are so perfect I couldn't believe it. So for all you other sleepdancers, here's an excerpt from the lyrics...

The Rhythm Is Gonna Get You by Gloria Estefan

At night when you turn off all the lights
Theres no place that you can hide
Oh no, the rhythm is going to get´cha
In bed, throw the covers on your head
You pretend like you´re dead
But I know it
The rhythm is going to get´cha

Rhythm is going to get´cha
Rhythm is going to get´cha
Rhythm is going to get you
The rhythm is going to get you tonight

No way, you can fight it everyday
But no matter what you say
You know it
The rhythm is going to get´cha
No clue, of what´s happening to you
And before this night is through, ooh baby
The rhythm is going to get´cha

Rhythm is going to get´cha
Rhythm is going to get´cha
Rhythm is going to get you
The rhythm is going to get you tonight

[mars]

Hi Kathy

Sorry to hear of your continuing troubles.

In the meantime - enjoy -

https://www.youtube.com/watch?v=dZU_AaohOeI

I see what you mean - my legs sure started moving

cheers

Mars

[kteague]

Thanks for that link, Mars. I can't think of anyone's music I'd rather dance to - I love her earthy sound. I just wish I could do it when I'm awake.

[Mimmie]

I only do that occasionally. I can not imagine the frustration that you have to go through trying to deal with it. I am like you though, it only happens when I am laying in bed. If I get up and go to the recliner then it stops. I too have had a very bad back injury. Thankfully, mine are not all of the time. Usually it's only when I have been too active during the day. Walking a lot seems to make for an unbearable sleep. Here's hoping that the new doctor will find a solution for you....love that song too, btw.

[mars]

Hi Kathy

And now back to a more serious matter....................

So something is obviously different between your recliner body impact and your bed body impact.

I am probably reaching for the wind, but if it were possible for you to have the appropriate tests whilst in your recliner, and then whilst in your bed, maybe some difference would be apparent that would lead to a solution.

If some medical practitioner, or sleep clinic, could just stretch the rules for you.....................

or (if viable)

you use your recliner for all your sleep requirements.

cheers

Mars

[kteague]

...So something is obviously different between your recliner body impact and your bed body impact. I am probably reaching for the wind, but if it were possible for you to have the appropriate tests whilst in your recliner, and then whilst in your bed, maybe some difference would be apparent that would lead to a solution...

That's what I'm thinking too. More so than sleep studies, I'm wondering if back scans in different positions might pinpoint something, but I doubt one can get MRI's in that position. LOL

[slaaplekker]

When you say treated by - do you mean you've tried all of the different meds for RLS/PLMD? And different combinations of those drugs. There is a Mayo Clinic monograph for clinicians on how to approach the treatment of RLS that can recommend drug/combos that have worked. Have you had you Vitamin B, Vitamin D and Iron levels checked. Normally idiopathic RLS is associated with low levels of iron in the brain. You might have normal serum levels but can still have low levels in the brain.

I know exactly how you feel but have been working through treatment with different drugs. Lately gabapentin, ambien and hydrocodone when necessary. Not perfect but a big improvement over the 1-1\2 hours of sleep I was getting before. I was on ropinorole and that worked for RLS not so much for PLMD but eventually had to switch because of augmentation - symptoms moving earlier in the day. Coming off of that drug was a nightmare since my RLS rebounded to new heights for a few nights. Usually if you find an effective RLS drug combo it will treat PLMD too.

Good Luck
John

[kteague]

Thanks John. I've done some reading on Mayo's site this evening and will get back to it later tonight to do some more. The meds I've used over the past 10+ years either alone or in some combination are Sinemet, Mirapex, Ropinerole, Neurontin, and various pain meds. Like you, I've gone thru the augmentation, with all of the first 3 listed. Had side effects that made life almost as bad as the movements did. Getting ready to go thru another transition - hate those! Trying my best to avoid meds that may cause even more problems. Have had iron studies and take iron. Also had Vit D tested, but not Vit B. Take several supplements recommended by physician.

In relation to sleep position, I'm wondering if the success rate of drugs might have something to do with if the source is in the brain or due to nerve damage in the spine. Also, I've been told that pain meds, muscle relaxers, and sleep meds don't stop the movements, but help one to sleep thru them. While sleep would be good, that would mean I'd still be getting the damage to my knees and hips with the movements. Do you (or any other readers) have any personal experience with that issue?

Hope we both find something that works. It's no fun.

[JeffH]

Sorry to hear of your troubles again, Kathy. Good thoughts and prayers headed your way. Sometimes getting all this figured out will drive a person nuts!

Hang in there.


JeffH

[Julie]

Hi, so sorry you're in that mess again! Just one thing keeps popping into my head (and I did read what you wrote) - that regardless of what you did in the past, I'd try again for, if necessary, another neurologist rather than an ortho guy because the neuro guy could take the chemical stuff into acct. and also not be quite as knife happy as the ortho guys usually are... long experience of dealing with both! Hope it all works out.

[SleepingUgly]

I read an article once by Dr. Guilleminault in which he said something like (I don't want to misquote, but I don't remember exactly) that the increased PLMS in their subjects after initiating CPAP was due to lying on their back more.

OK, I dug it out and here it is what it says:

Many workers, including ourselves, have already commented upon the potential effect of periodic leg movements on the persistent complaint of sleepiness. We had indicated that, following treatment with nasal CPAP, some patients may improve, whereas others may experience an increase in periodic leg movements. Fry et al, Criollo et al, MacFarlane et al, Shaffer et al., and George et al have considered the problems and have emphasized that the implementation of nasal CPAP may lead to the emergence of periodic leg movements. George et al. reported that no more than 8% of the noted increase is associated with the use of nasal CPAP.

Our belief is that it is not nasal CPAP per se but rather the time spent supine, or near supline, while using nasal CPAP that is the most important factor. We performed nerve conduction and electromyographic studies in about 50% of the patients reported on in this study. As shown before, about half of that subgroup had reduced nerve conduction velocity. The subjects with reduced nerve conduction velocity were more overweight and usually older. Mention of backaches, an unfortunately common complaint, was found in 82% of these cases. When we analyzed the diagnostic night versus the CPAP titration and the CPAP follow-up nights, we found out that subjects spent two-thirds more time on their backs on CPAP nights when compared to diagnosed nights. In these overweight subjects, with mild lower back problems, and probably mild nerve root trauma, as indicated by nerve conduction velocity studies, one could perfectly explain, using a simple physiological scheme, the increase in periodic leg movements with nasal CPAP therapy. Increased stimulation of the lower motor neurons, due to the increased sensory input associated with repetitive increase in microstimuli, and secondary to increased weight applied to the lower back itself was related to longer supine sleep in these overweight older subjects with poor muscle girdles. The increased lower motor neuron stimulation would partially depolarize the lower motor neurons and partially open a gate for other signals. These signals had been too weak, previously, to lead to a motor response but were additive now and led to periodic leg movements.

In this study, periodic leg movements were treated if they were numerous (present in more than one-third of recordings) and/or if present with arousals. They tried Sinemet first. About 16% (n=10) developed problems or didn't respond to treatment, and were switched to Pergolide, with good response for 6 of the 10. The 4 who didn't respond were treated with codeine at bedtime. 2 subjects, despite appropriate treatment of periodic leg movements and the absence of obesity, still complained of daytime fatigue and had a borderline MSLT. "Despite the risk of exacerbating the periodic leg movements, 20mg Fluoxetine was administered in the morning, with a resulting resolution of the subjective complaint."

Citation:
Guilleminault, C. & Philip, P. (1996). Tiredness and Somnolence Despite Initial Treatment of Obstructive Sleep Apnea Syndrome (What to Do When an OSAS Patient Stays Hypersomnolent Despite Treatment). Sleep, 19(9), S117-S122.

OK, enough from the experts. I have a question. If PLMS is thought to be dopamine related and stimulants are thought to impact dopamine, has the role of stimulants in PLMS/RLS ever been studied? Yes, I'm aware that it could exacerbate it, but could it, at any dose, improve it?

[Beachmeezer]

I love the Gloria Estefan anaolgy! it fits! I had alot of leg movements noted in my sleep study but I guess not enough for a RLS diagnosis. My mom has RLS and takes meds. Luckily it's not every night for me but the nights that it is sleep is impossible. - Kim

[Duckie]

Sorry to hear about your RLS and PLMS. I have just been diagnosis with it and just starting the first round of treatment. My iron levels are low so I have been on iron and have not seen an improvement. I have equal problem with sitting or in bed. I also have had a back injury so I agree that a ortho Dr. might help you. Good luck in finding comfort.

[kteague]

Hi SU - sorry I didn't get back to this sooner. Thanks for the PM. When I first read it I wanted to revisit it and give it more time to sink in before I replied. Then that memory glitch thing happened.

The article you quoted was interesting, as It was giving possible explanation for my observation of not having limb movements much unless in bed and not in my recliner. When I see one of my doctors Friday I am going to ask for their input. I would just sleep in my recliner if it were not for the benefits of sleeping in bed, which are less stiffness and less edema in my legs. Also, I have had no success using the cpap in my recliner, and I think there are times when my position shifts and I have apneas in the recliner, but in my bed the cpap and I do very well.

While there was no mention of "masking" as one reason movements might only show up after cpap, I continue to think that plays a major role. I doubt there's a one-size-fits-all cause and solution, but when what's available isn't working, I'm appreciative of any new understanding that's out there. Never thought about using a stimulant as a treatment for RLS or PLMD. It seems counter-intuitive, but hey, stranger things have happened. I take Provigil in the mornings. I 'm trying to figure out how Prozac taken in the morning is said to help limb movements at night. I just can't get my brain around too much these days.


You always find such interesting reading material.

[SleepingUgly]

I'm not sure there's any evidence for stimulants helping PLMs. There is some evidence that stimulants help people with ADHD sleep and people with ADHD (at least kids) tend to have more PLMs, but I don't know what the effect of the stimulants are on PLMs. I don't know if it's been researched or not.