Restless Legs Syndrome (RLS) Discussion Board

I would like your comments etc. on something I've been thinking about. I recently had a sleep study. I think I've mentioned before recently. Anyway, got all wired up with the electrodes, went to sleep at 11, woke up at 2, had a humdinger of a RLS episode. Didn't sleep anymore that night. Couldn't get up, kicked my legs until 6 am. I was sooooo miserable. I will never have another sleep study. It is not that bad at home--- Did that happen because I was restrained??? I had taken all my meds that I normally do. On my Medical Alert Card for RLS--it says AVOID RESTRAINTS. So did this happen because I couldn't get up and move or what. I had a sleep study 5 years ago and the same thing happened. I wonder if there is any other way they could do a sleep study with RLS patients without restraints, they know so little that maybe they don't realize or care what RLS patients go through. The tech that was taking care of me kept telling me "to try and go back to sleep". I explained to her why I couldn't----she had no clue. She even thought that RLS was something that happened in your sleep. When I see the doctor I'm going to run this by him. Because they may not have got enough information to determine if I have sleep apnea or not.

I would be interested in hear anything you have to say about the subject.

Also, the next day, my legs hurt so bad from kicking them for 4 hours. Never again.

Thanks.

BETTY/WV

Yes, this happened because you were restrained, probably in such a fashion as you could not sufficiently move around or wriggle to relieve your symptoms.


Did you have the card w/the warning when this happened? Did you show it to these people? If so that is really messed up. If it were me they would never had made it to the first strap before I would get physical and start hurling legal threats.

Yes, I had the card and it was stapled to my chart. I even called their attention to some things on the card. I guess I just thought it would be ok because of taking my meds. Seems I always learn the hard way.

But I will make an issue of this when I see my doctor.

Thanks for replying so fast.

BETTY/WV

They actually used straps on you??????

When you have a sleep study they connect all these electrodes to your head with a glue type stuff, and blood pressure cuff, etc. etc. and things on your legs, all this so they can tell what is happening with your body as you sleep. You aren't strapped down, just connected to these wires so you can't go very far. I could have stood up but they needed to get a reading and to do this you have to be lying down, sleeping if possible. Most people would have had no problem, but someone with RLS is in a bad situation.

BETTY/WV

This also goes to exemplify the problem that sleep studies cannot diagnose RLS and should not be used for RLS at all

Sounds like something I would not want to be doing.

I was being checked for sleep apnea. I wouldn't have had a sleep study if they were checking RLS. I know I have that. And that a sleep study can't diagnosis RLS anyway.

BETTY/WV

That sounds horrible, Betty! But hopefully, since you did get 3 hours of sleep, they will be able to rule in or rule out apnea.

my doctor suggested that i do a sleep study to see why im so tired even after getting 7 hrs of sleep. im assuming its cause i kick in my sleep almost everynight and all night i have been told. now im scarred to even do it!

im so sorry you had such a terrable experiance!
hopefully they got what they needed when you did sleep - Christy

Restrained? What do you mean by restrained, were you strapped into the bed? That's sounds awful if that's the case.

I've had two studies, the wires are annoying but they could be connected to a portable device that you can carry with you. At least this was how it was for me. All I had to do was summon the attendant, and he would come in and switch the wires to the portable. I was even allowed to walk around outside to have a smoke.

The portable device was apparently WiFi enabled because as I was nodding off during a time I was supposed to stay awake, he appeared to shake me fully awake.

No, Wayne I wasn't strapped down. It was just because of the wires that I wasn't able to move around. If I had to go to the bathroom the aide would come in and disconnect me until I went to the bathroom. I had no portable unit so I could move about. If there was no one told me about it. The portable unit sounds like a good idea for RLS. Thanks for telling me about it because when I see my doctor I'm going to tell him about all that I experienced and I'll ask him about a portable unit. So I felt restrainted.

BETTY/WV

There wasn't a portable unit when I had the three I had, either. I made them wait until the legs had quieted down to do the final connections, but after that, you really can't go anywhere. Like you, Betty, I had to call someone if I wanted to go the bathroom. They'd unhook the main connections and then rehook when I came back.

So sorry you had such a cruddy experience, Betty. I hope they got enough data to tell about the apnea.

Zach wrote:This also goes to exemplify the problem that sleep studies cannot diagnose RLS and should not be used for RLS at all

Thanks! Bears repeating!!

I've had two and have sworn never again! Both tests showed 'inconclusive results' and the reports actually blamed ME for poor 'sleep hygiene'. They just don't seem to understand that the strict protocol used for these studies....lights out, tv off, confinement....all trigger RLS/PLMD. I actually had to explain to an Administrative Law Judge during my Social Security hearing why I was 'uncooperative'! Now whenever a doctor suggests having one...I tell them "when you find a treatment that will stop the movement so I CAN fall sleep without being tortured, I'll cooperate".

The sleep study I had wasn't to determine whether or not I had RLS. My doctor commented that I had a "true" case of RLS. But he suspected sleep apnea. That is what the study was for. And it showed that I did have a mild case of sleep apnea.

So I had to go back and have another study to try the CPAP. And that time it wasn't bad, even with the CPAP. I didn't get RLS and I accually slept pretty well. So maybe the CPAP will help me sleep better. Maybe the apnea is causing some of the problems.

I really get tired of dealing with all of this, not sleeping, feeling tired all the time, gaining weight, side effects of meds etc. etc. etc. EEEEEEEEEKKKKKKKKKKKK. Of course we have no choice do we!!!

Take care all.

BETTY/WV