describing rls ??

Post by **Polar Bear** » Sat Jan 17, 2009 8:09 pm

Hello everyone

Yesterday my friend asked me to describe the symptoms of rls. I did my best, but in the end had to say to her, look none of what I am saying goes anywhere near to letting you know exactly how bad this can be.

I am pretty sure that somewhere, maybe not even on this site, I have read an article/post/something........ where a sufferer wrote a fantasticly descriptive explanation of how rls felt, and just as importantly, the effects that rls has on just every aspect of life, how it ripples out into everything we do, and the devastation it can cause.

Does anyone know of any such article/post that I could print out to show to anyone interested. I have been on google etc. for hours but haven't come up with what I am looking for.

Thank you

Post by **ViewsAskew** » Sat Jan 17, 2009 9:37 pm

Wish I knew...

Neco · Post by **Neco** » Sat Jan 17, 2009 10:10 pm

Well.. I have always described it as slightly less intense than hitting your funny bone, only the feeling doesn't fade.

As for how it can affect your life, "The Spoon Theory" is about as close as I can think of a good example. It seems to be well adapted to many chronic conditions that have the same quality of life impacts.

Aiken · Post by **Aiken** » Sun Jan 18, 2009 12:02 am

Or a permanent sensation of a reflex being triggered.

Post by **Polar Bear** » Sun Jan 18, 2009 4:38 am

Oh Yes, The Spoon Theory.... I'll soon locate that.

Thanks Zach, and everyone.

Neco · Post by **Neco** » Sun Jan 18, 2009 5:19 am

http://butyoudontlooksick.com/the_spoon_theory/

http://www.butyoudontlooksick.com/navig ... Theory.pdf

Post by **Polar Bear** » Sun Jan 18, 2009 9:58 am

Thanks Zach........

dogeyed · Post by **dogeyed** » Sun Jan 18, 2009 2:39 pm

Far out, Zach. You made my day.
GG

waterloo2 · Post by **waterloo2** » Mon Jan 19, 2009 12:32 am

HI PB

Very hard to describe.
My right one is driving me mad tonight and is hurting my Arthiritis too. Hope doc can give me something on tues pm.
I have to be careful what else I can have.

gill
:roll:

sardsy75 · Post by **sardsy75** » Mon Jan 19, 2009 3:20 am

I sometimes describe it as a build-up of lactic acid in your muscles that you can't get rid of.

The other way I've described it is as if i've run a marathon and my leg/arm muscles just wont "warm down" and stay taught, tense and "full of energy/tiredness" that I just cant get rid of.

When I was a child, the only way I could describe it was "My legs are so tired and I dont know what to do with them".

The biggest thing that bugs me is when people assume that it's an INvolunatry movement. That stirs me right up and I say rather forcefully "Ah No ... I WANT to move my legs and arms ... it's Voluntary".

Back in mid-2003 when I'd been flown to Bris to see the Neuro "STAT", I still vivdly remember the night one of my oldest & dearest friends (who's a nurse) walked into my hospital room, took one look at me lying there waggling my legs back and forth and said "please tell me you're doing that yourself" and she visibly relaxed when I said "yup ... did you happen to bring a chainsaw?"

Megs · Post by **Megs** » Mon Feb 09, 2009 4:59 pm

I have recently starting explaining mine as a wringing sensation. There's almost always something close by that you can actually wring..like a towel or shirt for a hands on visual.

I say it starts building pressure deep in the muscle like when you start to wring out the towel..but after a bit, the pressure and urge to move get to be so much that you just HAVE to. Like when your hands won't turn the towel anymore, and you have to let go with one hand to get a better grip. There's the kick. Then it starts all over again.

Post by **Polar Bear** » Mon Feb 09, 2009 6:04 pm

Megs, that's a pretty good description.

Angela H · Post by **Angela H** » Thu Mar 05, 2009 6:36 am

Hi, I'm new to this site. I have has RLS for years as have my brother and mother. I have read many descriptions of RLS, but they all seem to make it sound like the symptoms are just annoying or irritating. I did well on Cymbalta and occasionally Requip or Mirapex when I was really suffering. Then, when my husband lost his job we couldn't afford the Cymbalta any more and now nothing is really helping. Everyone seems to think I'm really just describing Charlie Horses, but with that at least eventually you can straighten out the cramp. I have stretched so much that I have pulled muscles trying to relieve the feeling. It is sort of like when you do weight lifting and over do it and your muscles are super tight except that it is more throbbing and deep. I feel like my body from the waist down is too small for my insides and they are trapped and frantically trying to push out. It is sort of like it would feel if you tried wearing a shoe that is a size too small all day long. My toes, feet, legs and lower back seem to have a mind of their own and they compulsively clench and unclench. I am very limber at 52 and can still touch my palms flat out on the floor when I lean over, but my muscles don't seem to get it. They seem to want to be more limber.

Neco · Post by **Neco** » Thu Mar 05, 2009 3:26 pm

Angela, please click on the link to the Mayo Algorithm in my signature. This is a very important tool that we can show our doctor. If your doctor rejects the idea - find a new one, and another, and another. Same goes for if you've tried everything you can currently afford, on the list except a medication they refuse to prescribe (like opiates). You have to keep fighting and looking for a doctor who will listen.

I know its hard to see doctors when you have no money. I lost my insurance when I was 19 and have been living uninsured for almost a decade now. I got really lucky with the local doctor in town, whom originally saw me for a planatar wart that was affect my ability to walk. I've paid almost no bills over the years, and I wish everyone could get the same treatment..

Restless Legs Syndrome (RLS) Discussion Board

describing rls ??

describing rls ??

Describe RLS