Restless Legs Syndrome (RLS) Discussion Board

Hi my first post here so forgive me ahead of time.

I've found that sound is one of my RLS triggers. Last night my husband was rubbing his arm with a creditcard. The wosh wosh instantly made my legs start going. I've also been triggered by the beeping of setting an alarm clock, or the keys being pressed on a phone, kids getting out of bed in another room has set it off. Anyone have this happen to them? I also have not yet found a single medication that works. I've taken Benedryl, Tylenol PM, Amnitriptaline, trazadone, requip, hydrocodone, neurontin, alprazalam, Klonipin, ultram, clonidine hcl, oxycodone, ambien, ambien cr, ferrous sulfate, and rozerem to name a few. None have helped. Neurontin was the most helpful increasing my nightly 0hrs - 2hrs of sleep to up to 3hrs and 4hrs, but in the 6 months I took it I gained 60lbs and had to stop taking it. I'm just interested if anyone else has sound triggers. Also one time I decided I'd hold my legs still as long as I possibly could and as I looked at them I literally saw my skin jumping like there were bugs just under the skin.

you really should read all the info about rls, you will find that taking Tylenol pm or any of the over the counter pm meds are known to make rls so much worse.. Also ck out the info about antidepressants, the Amitripaline and benedryl are two more known to increase rls. I tried taking just one tylenol pm once and my rls was so bad I walked and cried ALL night long

www.rlshelp.org has a list of drugs used to treat rls and a list of drugs known to increase rls. you should print those two and keep them with you at all times!!!!

To answer your question, no sound never affects my rls, but if someone touches my legs it will usually kick in my rls.

Hi Woodsie, and welcome to the forum. So sorry you haven't found relief with all the meds you've tried. It can be quite frustrating going through the list of meds and not having anything work. Sometimes when nothing works, there's the possibility that what you have isn't RLS. Has your doctor ruled out other conditions?

The thing when you look at your legs and see the muscles jumping sounds more like benign fasciculations. When you have symptoms do you absolutely have to move, and does movement relieve the symptoms for a while? Those are diagnostic criteria for RLS.

My daughter has a sensory integration disorder, and sound can send her into something which she likens to static electrical shocks, or pain, but not pain. It's very hard to deal with, and nothing helps her as far as medication. I guess I'm just wondering if you might have something like that.

And if you do have RLS, I hope you find some relief soon!

Yep moving is the ONLY thing that helps. If I move I'm cured. I've just never been able to master sleep walking ... hehehe. LOL I had a sleep study done, it was the most torturous night of my life. I never fell asleep, and ever time I had to get up the tech. had to come in and help me with the wires. I think I drove her nuts every few minutes time to get up again... all night long. I balled my eyes out till I didn't have any tears left and she sent me home.

Oh I forgot another trigger for me is being touched. If someone bumps my leg... bam! it starts up, light touches seem to be the worst. Of course it doesn't need to have any triggers to start up, just sound and touch do it every time.

Hi Woodsie: Welcome, what you describe sounds like RLS but the only difference is I never heard of sound and touch triggering RLS. And if it is RLS some of the meds you have been on are terrible for RLS. And I never heard of being able to see the muscles in your legs or arms moving, so as to notice it.

Maybe someone here will have some answers for you. I just think it is a good idea to check out the meds that worsen RLS.

Wish you the best, and hope you find some answers. Just read everything you can find on this site. So much helpful information.

Hope to hear from you again, soon. BETTY/WV

SquirmingSusan wrote:My daughter has a sensory integration disorder, and sound can send her into something which she likens to static electrical shocks, or pain, but not pain.

It's probably not the same thing, but of interest to readers is a similar problem I have. I generally don't have issues with it, but when I'm dosed up with opioids, it can go off of the charts. Any abrupt noise at all makes my entire skin get a sudden, significant electric shock.

I used to think it was a startle response, but it doesn't seem to be, because I can snap my own fingers gently and make it happen, and I'm not exactly getting startled there.

I mention this for people who take opioids, as it may help explain some things.

(On the other hand, there's also the reaction most of us have to sounds like nails on a blackboard. It generally gets described as making your skin crawl. Sounds familiar to an RLSer, I'd think. I wonder if there's any connection.)

woodsie357 wrote:Oh I forgot another trigger for me is being touched. If someone bumps my leg... bam! it starts up, light touches seem to be the worst.

Yeah, my wife's feelings used to get routinely hurt when she's give me a little affectionate stroke on my leg or something, and I'd jerk away and say I couldn't be touched right then. I didn't know why, and that of course is not a very good explanation for doing something people usually only do when they're mad at you.

When I got diagnosed and we figured out that it's when my RLS is going, that made her feel a lot better.

Aiken wrote:

woodsie357 wrote:Oh I forgot another trigger for me is being touched. If someone bumps my leg... bam! it starts up, light touches seem to be the worst.

Yeah, my wife's feelings used to get routinely hurt when she's give me a little affectionate stroke on my leg or something, and I'd jerk away and say I couldn't be touched right then. I didn't know why, and that of course is not a very good explanation for doing something people usually only do when they're mad at you.

When I got diagnosed and we figured out that it's when my RLS is going, that made her feel a lot better.

DH sometimes still pouts a bit. He understands on an intellectual level that it's the RLS (and he even has RLS), but he doesn't get it on an emotional level. He's very touchy/kissy and he just doesn't think - he touches. Then he's slightly taken aback until he puts it in perspective.

ViewsAskew wrote:

Aiken wrote:

woodsie357 wrote:Oh I forgot another trigger for me is being touched. If someone bumps my leg... bam! it starts up, light touches seem to be the worst.

Yeah, my wife's feelings used to get routinely hurt when she's give me a little affectionate stroke on my leg or something, and I'd jerk away and say I couldn't be touched right then. I didn't know why, and that of course is not a very good explanation for doing something people usually only do when they're mad at you.

When I got diagnosed and we figured out that it's when my RLS is going, that made her feel a lot better.

DH sometimes still pouts a bit. He understands on an intellectual level that it's the RLS (and he even has RLS), but he doesn't get it on an emotional level. He's very touchy/kissy and he just doesn't think - he touches. Then he's slightly taken aback until he puts it in perspective.

Thank you! Yes it seems the same as with me. And sounds triggers are a lot like you were saying with the nails on a blackboard, it just all goes directly to my legs. I really appreciate the responses thank you so much!