Would some of you with RLS please describe your symptoms

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Date Joined Nov 2008
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   Posted 1/18/2009 7:34 AM (GMT -7)   
Back before I was dx'd with fibro I started getting these strange sensations in my legs...mainly from the calf down.  It felt like a had an ace bandage wrapped tightly around them...staticy...slimy..can't really explain it.  I first went to a GP who ran a bunch of blood work.  All normal.  Went to a Rheumy and neuro...had MRI, more blood work...nothing found except some disc compression.  Finally dx'd with either peripheral Neuropathy or restless leg.  It went away, except for when I went to bed I had an occasional  crawling sensation just on the part of my legs that were touching the mattress.  Changed their minds about the neuropathy because that doesn't disappear and is usually painful.  That was 17 years ago!  Now it is back and the sensations are there 24/7.  Tingling/crawling...tight, tugging... and leg movement at night...I kick my legs constantly to get rid of the annoying sensations.  Went back for more testing last year...all normal...Rhuemy says it RLS, and anxiety.  I know fibro also had these symptoms.  Oh...and this is weird...if I have knee socks on I don't feel it as much.  Also skin on my legs is VERY sensative to touch...have to wear flannel of soft cotton or I go insane!
Do any of you with RLS have the symptoms more than at night??  All of these disorders have such similar symptoms and I guess it doesn't really matter except I don't know if the meds are making it worse.  Read in the Lexapro side effects it can 'exaserbate RLS'.

fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium

Post Edited (vestabula) : 1/18/2009 7:50:23 AM (GMT-7)

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   Posted 1/18/2009 8:45 AM (GMT -7)   
Some medications can cause RLS. For example, at one point, I was taking Tramadol for pain, and ran out. For two nights I slept not a wink. The second part you wrote about the legs feeling creepy, crawly and having to kick your legs, trying to shake it off describes. It was horrible. It almost seemed as though it started about groin level, travelled down the inner thigh, and then I's get up and stomp around the room trying to shake it off. Before the tramadol, benedryl would cause the same type of RLS. Maybe it was coincidental. It is a very uncomfortable feeling, I hope you can get it sorted out.

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   Posted 1/18/2009 1:26 PM (GMT -7)   

I have had problems with my legs for years and didnt' know what it was until my Rheumatologist mentioned it. Most of the time I have the problem when I go to bed, but sometimes it bothers me when I am just sitting and watching t.v.

It is hard to explain, but the most bothersome part is I feel like I need to stretch my legs or get up and walk. Nothing helps. It is just a very heavy tight feeling which makes me want to stretch or flex my legs. I try laying with my legs straight, curled, etc. nothing helps it feel better. Now that I am on meds I don't have the problem very often. Hope this helps a bit.

Hugs!!  Margie

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Fibromyalgia*Osteoarthritis Of Spine*Sleep Apnea*RLS * Depression*Chronic Fatigue*Allergy/Sinus*Menopause

Irish Babe
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   Posted 1/18/2009 2:29 PM (GMT -7)   

I have had this problem for yrs. One thing that helped, not cured, was to stop drinking reg tea, I have maybe 2 cups of coffee a year, I love Pepsi, neither cause the prob. BUT reg tea sends me out of my mind, my feet and legs up to my hips, go nuts. I drink decaf or herbal tea and it is much better. If I sitting on the couch, my foot starts to twitch, I don't even realize it, my DH will point it out to me. Nighttime is horrible, I can't lay on my right side due to shoulder prob, but my left side gets really twitchy. As miserable as it is, it was worse w/ reg tea. I don't know if that is cause for you, but maybe something to consider. Hope it helps, I know how unpleasant it is. Good Luck.

God bless.  Alice.

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Date Joined Nov 2008
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   Posted 1/18/2009 3:23 PM (GMT -7)   
I get it sometimes when I take to many B Complex vitamins. Even sublinqual B12 will kick it off on me. Sometimes its for no apparent reason at all I can identify, but I figure its probably something I either ate or forgot to take. I have had it so bad it wasn't just my legs. The legs were the worst, but it was effecting my whole body. I went and soaked in a tub and got the water as hot as I could stand it, and that calmed it down enough I could finally relax and sleep.

Edit: Funny you should mention those knee soaks. I have poor circulation, or something, to both feet so they feel really strange, almost wooden, so I always wear socks so I have the sensation of those instead of the strange sensation of feet feeling like they are half dead. Its probably a touch thing. The brain is nerve gated so if a touch sensation is passing through, it can block other nerve impulses.
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Post Edited (Grailhunter) : 1/18/2009 3:32:55 PM (GMT-7)

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Date Joined Dec 2008
Total Posts : 478
   Posted 1/18/2009 3:30 PM (GMT -7)   

Have asked this question myself. Now I have fasciculations, light tremors in the calves. My rheumy and neuro. after many tests have labeled it BFCS, benign fasciculation cramping syndrome. Do you have anything like this?


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   Posted 1/18/2009 3:43 PM (GMT -7)   

Thanks for your replies.  Alice...I drink lots of tea...you might have something there.  I wouldn't worry about it if I didn't have it all the time, because that doesn't really fit the criteria for RLS.  I will admit is is worse when I sit and go to bed.  This came on me out of nowhere.  I was on grand jury duty and had been sitting all day long, stood up and there it was...hasn't left me since, although some days are worse than others.  I just feel like I am kicking myself to death!



fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium

Post Edited (vestabula) : 1/18/2009 3:51:36 PM (GMT-7)

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Date Joined Dec 2008
Total Posts : 176
   Posted 1/18/2009 6:26 PM (GMT -7)   
I'm glad the other girls were able to help you out a bit, Donna. That feeling sounds annoying and unpleasant. RLS is one thing I have never experienced, I get tingling in my legs and arms, but nothing like RLS.. it's just a tingling that comes and goes, and certainly doesn't keep me up (even though I still do have problems going to sleep - has nothing to do with the tingling)... I do get a very "heavy" feeling though in my legs, was never quite sure what it is from, it's so hard to explain.. kind of what Margie was describing, they get heavy so you feel the need to stretch and walk around but nothing relieves it.. hmm, Idk what it is confused   Do you think that has something to do with the bloodflow? or what?
Sorry I turned this into something quite different, Donna, but you talking about the legs and Margie mentioning the "heaviness" got me going LOL.
21 years old
Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Regular Member

Date Joined Apr 2005
Total Posts : 155
   Posted 1/18/2009 6:55 PM (GMT -7)   
My DH has RLS although he doesn't notice any symptoms.....it was ME who told his doctor about what HE was putting me through at night!
I have a hard enough time sleeping without him kicking all night long!
His legs kick like they are having a seizure (one at a time) all night long. First the right and then the left. Each "seizure" lasts for about 12 seconds and I have about a 3 second window before the other leg starts in. All night. Every night.
He was put on Ativan. This doesn't seem to help however he sleeps like a baby and perhaps it really IS helping hence him not knowing anything about it??
The more time I spend with people, the more I like my dog.

Regular Member

Date Joined Aug 2007
Total Posts : 171
   Posted 1/18/2009 10:36 PM (GMT -7)   
What you describe as far as feeling like you need to move or stretch your legs, and the fact that it's worse when you sit and sleep, does sound like RLS. I have RLS and it's not just limited to when I'm trying to sleep. I have a very hard time sitting still for any period of time without moving my legs. It doesn't matter if I'm watching TV, reading, etc. I'm not sure how I would describe the exact feeling. I guess "heaviness" is a good term, I just always say my legs feel "impatient." I will jiggle them, rub them back and forth, flex my muscles, etc. Like Luv's husband, I also apparently twitch and kick all night long, luckily I don't notice it. DBF would tell me about it in the morning, this was before the Fibro diagnosis and before the RLS diagnosis as well. I always figured he was exaggerated or joking, but he continued to tell me I was kicking him all night. It's bizarre and definitely irritating. You could mention it to your doctor, since one of your medications could be causing it. Either that or he can help you with a solution. Iron supplements, oddly enough, helped me out!
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