sleep study?: I have had RLS for... - Restless Legs Syn...

Restless Legs Syndrome

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sleep study?

LanaCSR profile image
21 Replies

I have had RLS for 7 years and never have been referred for sleep study until today. Does anyone know what purpose a sleep study is for RLS?

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LanaCSR profile image
LanaCSR
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21 Replies
LotteM profile image
LotteM

To assess the impact on your sleep: duration and quality. If it is a proper one, they will also attach electrodes to your calves to assess whether you also have PMLS and the amount of it (average no. of movements an hour). Usually one underwstimates the amount of sleep one gets, even during very disturbed nights. That is why your own accounts are less reliable.

Lotte is right. Your sleep may be better, or worse than you think it is. If you have Periodic Limb Movement when Sleeping (PLMS), which 80% of RLS sufferers have, you won't be aware of it, but it will affect your sleep.

PLMS sufferers don't get as much "deep sleep" and this can affect your health more generally.

A sleep study may also discover if coincidentally you suffer sleep apnoea.

rkatt profile image
rkatt

I had a sleep study at Guys Hospital London 2 weeks ago. The results will come mid May. The neurologist Dr Lechziner, said he wanted to see if previously unidentifiable factors were at work. I don’t fully understand why this study was needed. I have deep chronic super painful RLS with wild leg spasticity. All this has been noticeably worse since I was put on Pregabalin. That’s it.

LanaCSR profile image
LanaCSR in reply torkatt

OMG yes, I developed twitches/tremors since starting on Lyrica. I have been able to decrease from taking it three times a day to once a day which has greatly decreased these side effects although they are still there as I noticed in bed last night. I feel I need to stress to the sleep study dr that I only started having these twitches when I began taking Lyrica so that they don't misdiagnose me when I have the sleep study done.

Hi. Assuming your sleep quality is poor, a sleep study might reveal why this is.

My sleep quality has been poor for 10+ years. I had no idea why this was until my initial sleep study in 2011. Finding out I had sleep apnea was not surprising, but finding out that I also had severe PLMD was. I had never even heard of PLMD before! It was a relief to finally have a big piece of why I was sleeping poorly!

I wish you luck. Have you read up on what to expect during a sleep study? If you have any questions, you’re welcome to message me.

LanaCSR profile image
LanaCSR in reply to

Oh, please, I would love to know what to expect. I have no idea and am nervous about this. Thank you so much!

in reply toLanaCSR

Hi again!

They will have you arrive in the early evening. The technician will walk you through everything. He/she will hook you up to the machine, which takes about 20 minutes. He/she will put about 20 electrodes on your head, 2 belts around your torso with wires running down each leg. You will also have electrodes put on your chest, ankles, and at the corner of each eye (to catch eye movements). All wires will be connected to a box, which you will have to carry around with you if you need to go to the bathroom, etc. after everything is connected. If you go to the bathroom, don’t look in the mirror! You’ll wonder what the heck happened to you!😆 You will also have a pulse monitor put on one of your fingers.

After you are hooked up they will give you a quick pencil/paper test that asks questions like how tired you are, etc. This is repeated upon waking in the morning.

The technician will help you into bed, turn out the lights, leave the room, then speak to you through the PA system and instruct you to do certain movements. By doing this, he/she is ensuring that everything is working correctly. He/she will have you move your legs up and down, blink your eyes, etc.

After the test, you can fall asleep. You might think that it will be impossible to get comfortable with all the stuff hooked to you, but you’ll be surprised.

They wake you up about 5am, take everything off, then you are free to leave. The results take a week or two to come in.

Please don’t stress about needing to be asleep all night in order for them to find anything useful. The machines used for polysomnographies (in-lab sleep studies) are very high tech.

An electrode might fall off in the night. If this happens, the technician will come re-connect it.

I include two websites. The first one is information about a polysomnography, and what it can detect. The second one is an image of what you will look like all connected.

mayoclinic.org/tests-proced...

google.no/search?q=polysomn...

LanaCSR profile image
LanaCSR in reply to

Thank you sooooo much! That is really helpful. You are the best!!

in reply toLanaCSR

You’re very welcome!😀

Good luck and I hope you find it beneficial! As you can see from the first site I give you, a polysomnography can catch a whole host of sleep disorders.

One more thing: every lab does things a bit differently, so your experience might differ somewhat from mine.

First thing’s first, but come back if told you need a CPAP because sleep apnea was found and we can walk you through a titration study (next step if told need a machine).

I have also had a test for narcolepsy (called a Multiple Sleep Latency Test or MSLT), so I can help walk you through that too if necessary.

martino profile image
martino

In my case to check wether I had RLS. The thinking was that if I had PLMD then the RLS diagnosis was probably right. The neurologist could not understand why I had so much pain. The sleep study ( unpleasant business!) showed I had PLMD and also sleep apnea. A subsequent nerve conduction test showed that I had Small Fibre Neuropathy as well hence the pain

Raven123 profile image
Raven123

Doctors believe that sleep apnea is a cause of rls.

LanaCSR profile image
LanaCSR in reply toRaven123

Really?? Oh, wow! So if someone with RLS has sleep apnea, all they have to do is wear that oxygen mask at night to get rid of RLS?

in reply toRaven123

Really?! That’s news to me as well.

in reply toRaven123

And where did you see that.? I know people who have had RLS for years and then the sleep apnea followed years later.

nightdancer profile image
nightdancer in reply to

ha! That is just a theory that has never been proven in a legitimate study. There are a LOT of theories about RLS from people who have not studied sleep disorders. A GP only gets 6 hours total in med school. And, there is no way you can learn about sleep disorders (100 plus) in 6 hours. That is why we need to see doctors trained in sleep. I have a new neuro who is a headache guy, and will be getting Botox for my migraines, which DOES work for ME. And, as I do with ALL of my doctors and surgeons, he got a copy of Clinical Management of Restless Legs Syndrome, by Dr. Mark Buchfuhrer and other sleep and RLS experts contributing, It is considered to be the "RLS Bible". Available at Amazon.

nightdancer profile image
nightdancer in reply toRaven123

They mistakenly think that apnea can cause RLS! Some of them think that, but NOT the ones who do all the research officially. I wish you would back up some of your statements with sources and references. I see mass confusion developing.

Raven123 profile image
Raven123 in reply tonightdancer

Hello nightdancer, I am sorry you misunderstood. I am not in agreement with the theory that sleep apnea causes RLS. I clearly stated that I have suffered in the past with RLS , had a sleep study, showed negative for sleep apnea. I was simply responding to a question as to why a doctor would ask you to have a sleep study if you are N RLS sufferer.

sweetiepye profile image
sweetiepye

Hi , I have been going through the same issues. I just finished my second sleep study so they can decide the settings for my c-pap machine. I asked that same question after my first study and this is what I was told.....the study showed the small amount of oxygen I was taking in during sleep which means my whole body, every organ is deprived . The theory being that once my oxygen levels are restored my circulation will improve which should help my RLS. I am also anemic so I am hopeful the iron I'm taking will kick in also. I am so sleep deprived that I sleep walk and have no memory of what I do. My sleep apnea is actually mild.

LanaCSR profile image
LanaCSR in reply tosweetiepye

Oh, good luck with all of this! I would love to hear how things do as you get the c-pap, etc. I may be following in your footsteps as I, too, have very low iron (serum ferritin) and will need to get iron infusion. I actually hope I don't need a c-pap because I don't want to wear that. Ugh!

sweetiepye profile image
sweetiepye in reply toLanaCSR

I will let you know how it plays out. Wearing that mask is going to be difficult, but I'm motivated. Pam

nightdancer profile image
nightdancer

They do not look at RLS in a sleep study. But a sleep study makes sense, to check for PLMD, which is involuntary leg movements in sleep. RLS is when you are awake. Then , of course, they will look for apnea, if you are complaining about "getting enough sleep, but still feel like crap when you get up". A sleep partner CAN tell you if you are snoring or kicking them in your sleep. PLMD is a "cousin" of RLS, and most people that have RLS do most likely have that also, about 70%.

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