I don't know if I have RLS or not, maybe someone can help?
Question posted by Cathleen186 on 1 March 2011
Last updated on 7 March 2021
All my life from childhood til now, I always have to be shaking my leg. As a child it was the only way I could fall asleep. I'm moving it now as I type. At meetings where I can't shake it a lot, I still tense the leg to provide very small movement no one can see, but alone I prefer to shake it. I know it sounds silly.
I don't think it is RLS because there is to "itchy " feeling or restlessness. More like sucking your thumb, I just feel comforted when I do it. It's always the left leg, never the right. I doesn't bother me, but those around me tell me to stop, or in a restaurant the whole booth will shake and I even had a lady get up and yell at me for shaking the table!!!
Also it is not unvoluntary movement because I've had that when I was detoxing from Celexa, twitches I couldn't do anything about.
Does anyone have this? Heard of this? Is it just a part of my anxiety disorder?
Added 5 March 2011:
Just an update. I told my dc and he prescribed Requip. I took 2 doses. Seems to be working
I am 84 years old, and the RLS (name for whatever happens tome is VERY inaccurate), has gotten worse as I have gotten older. This name implies that the problem is in the legs. The legs seem to be the aim of the vicious nerve attacks that begin somewhere much higher and go screaming down my body to the legs where it explodes if I do not immediately move my legs which stops it--for the moment. But it is always just waiting for me to relax again and then I feel it coming fast and hard. I have become so tortured by it that my body wakes before it gets far and moves my legs. But it is a miserable night, I often just give it up and get up and give up trying to sleep.
I have looked up some meds and discontinued some (Omeprazole) that can cause RLS and it has helped. I recently switched from Armour thyroid back to Levothyroxine and wonder if that is why it has come back so consistenty and with such force.
I have been given several different prescriptio meds by my doctor, some of which have helped. But most leave me pretty dull and/or tired and pretty useless the next day. Gabapentin lost effectiveness after a few weeks, plus left me dull and useless the next day. I never take these meds on a regular basis, but only when I had the problem. The one thing that has been somewhat reliable is Valium. I bite off a small piece (I usually get 6 "servings" out of one 5gm pill) and soon the source of that nerve is calm and I sleep. But the length of the relief is becoming shorter. I used to sleep 4 or 5 hours--which was WONDERFUL--but the last few weeks it has been more like 2 or 2 1/2 hours.
Valium has been my only source of peace some times--occasionally emotional upset due to life issues--and I do not want to lose it as a tool, or use it up too quickly and as a result lose access to it. I am very careful with it, but the nights are becoming more and more miserably and often torturous.
Does anyone else on here have this kind of vicious nerve attacks and have any information about what causes it or what relieves it? What meds might affect--make it worse, like Omeprazole and antihistamines that make you sleepy--for awhile I was using 1/4 of a 25gm Benadryl when I could not sleep until I figured out that one of its side effects is RLS.
Votes: +0
OX
oxyholic
7 March 2021
I do I'm 64 and been on pain pills for 10 years, all of a sudden the government decided a safe mg would be 50mg a day, I was taking 2 kinds oxycodone and hydrocodone for chronic low bake pain which I still have, I'm down to 25mg a day, the withdraws are not bad its my nerves. In the evening around 8pm I go to relax in my recliner then it starts, my body will start felly funny at times my arms will jerk then moves to my legs and I can't stand that feeling I get so I will get up and take a hot shower that will stop the rls or funny feeling that I get just for awhile but here's what helps me I will take a 5mg Ambien sleeping pill which my Dr.
has me on then I will use magnesium lotion made by Life Flo which calms my legs and arms down where I can get 4 hours sleep then it starts again and wakes me up, I'll have to get out of bed walk around the house for a bit, usually I wind up taking a half of oxycodone 15mg then I can go back to sleep for a couple more hours then the vicious cycle starts again when I try to relax in the evenings I just hope my pain doctor don't completely take me off of them, I'll be screwed then and won't know what to do. the magnesium lotion tho is a life saver hope I answered your question grandmadoris
DP
Dperruzza
22 Aug 2017
I Shake my legs while I am sitting and while I try to go to sleep.But i did notice at nite my feet itch also. I believe it's anxiety and nerves I've been under a lot of stress lately. More stress more shaking
Votes: +0
BO
bo1234
19 May 2011
This may be a little too personal, but I heard on the NEWS the other day that RLS may be cured by having orgasms. I am NOT kidding. Me and my husband laughed about it, because I also have RLS and was diagnosed, but never took anything for it. Since I also have Graves Disease which causes sever anxiety, I was given Klonopin. Since I started taking that, the RLS has not bothered me ever again. So you can take your pick. Sorry if that was a little personal, but it REALLY WAS on the news, probably one of the cable news shows, like MSNBS. Good luck to you, and I hope you find something that works. I think it could also be a vitamin deficiency.
Votes: +0
JK
jk13
19 May 2011
Hahaha, now that's advise that we all need to know! For me, it would also help prevent prostate cancer, so it would be a win win situation :) Don't worry about being to personal, I think that it's actually very interesting and wonder what it is chemically that helps? Would it be the dopamine that is released during an orgasm? Many of the meds that help RLS also release dopamine and are used for Parkinson's Disease. I wonder if increased orgasms would also help prevent Parkinson's as well? Just a thought. Thanks for the info! Jeff K
CA
Cathleen186
20 May 2011
Yes I agree, very interesting. cathleen
IN
Inactive
13 May 2011
i have rls and ras, its like this feeling thats deep in ur bones and in order for you to get some kind of relief, you got to stretch your arm or legs till they hurt, its a sensation and tingling like worms in you legs and arm, i get it in both, i find now that im tapering off of my pain medication, part of the withdwawl is the resltless leg and arm, i talked to my dr who said it can be treated with Sinemet, wich if for parkinsons, wich also makes u hallucinate.
Votes: +0
JK
jk13
13 May 2011
You know, I wasn't sure if I had rls as I have, well, restless legs, especially at night and watching tv, but a few weeks back it got so bad at night that I had to walk around the house just to get them moving cause the sensation was so awful. It only happened a couple times, and hasn't created a real problem in my life so it isn't something that I really think needs to be treated (although I will let the doctor know about it at my next visit), but I do think that I now know what it's really all about. Totally right on about the worms, a totally unexplainable obnoxious feeling that can only be relieved by movement of the affected limb.
And now that I think of it, duh... this happened when I made my last decrease on my Klonopin (went from 3mg down to 2mg, and decided to stop there for a while)... It would make allot of sense that that might have been the cause for the worsening condition...
Anyways, I have a totally new appreciation and respect for those who deal with this on an ongoing basis, it would literally drive me up the wall... and I couldn't imagine ever getting a good nights sleep!
Best of luck to you helpmehawaii, and as you mentioned, the meds aren't very fun to take as I had to take Requip for a while for another off-label condition, but the side effects were simply way too much. For me, I started to get hallucinations from the med in such a way that I couldn't tell if I were awake or dreaming. It really was strange stuff!!
IN
Inactive
5 March 2011
OMG! I'll have to get that for my hubby! Guess we were all wrong! Good luck kiddo! Mary
Votes: +0
LA
Larsy1966
5 March 2011
Hi Cathleen:) It just sounds like something you do. It could have to do with anxiety or just something you're used to doing. I did not have rls when detoxing from suboxone but I had a roommate who had it and she said it was the worst feeling ever. The doctor referred to it as the heebie jeebies. I think the clonidine relieved her from this or the neurontin. I think a lot of people shake a leg while sitting, just something to do like twirl your hair but if it's bothersome to you then I think that's rls. Are you all done with your pain meds and if so how is the suboxone working out if you're taking it. Hugs to you!
Votes: +1
NI
Nik.Nikita
2 March 2011
I believe it may be part of your anxiety disorder, but I'm not a doctor. A lot of people have little habits . I knew someone once who would always blink his eyes a lot when anxious. He did it as a child, and still does it A's an adult when nervous about something. Talk to your doctor about it. I used to shake my right leg a lot when I was in bed, it would drive my husband crazy. And the more he would ask me to stop, the more I would need to move my leg. Ha!Ha! It was almost like subconsciously I knew it was bothering him, but I couldn't be still. I don't do it very often anymore, so I think in my case, it had something to do with all the meds I was taking, and also when I wasn't taking them because I ran out. I hope that person wasn't someone you have to deal with often, the one who got upset at your table.
I hate to say this because I would really rather have a few friends than not have any, but I just don't like most people. It just seems that people are so rude and uncaring of others in this day and time. What is up with that? I avoid people most of the time because they make me uncomfortable. I don't like being that way, it's just how I feel. Guess I've just had some bad experiences. Hope you have better luck!! NIK
Votes: +1
CA
Cathleen186
2 March 2011
Thinking back there have been some pretty amazing mean people in my life. The lady at the table was just a stranger , thank goodness. I try to stay away from the mean ones cause I don't know how to deal with them, I just freeze. Almost everyone I invite into my life is nice (except my in-laws!!! ). That's why I'm always on this site, some good people like you all here are an example. Cathleen
IN
Inactive
2 March 2011
Cathleen you dont sound silly. Im not sure what it is... I think we attribute things we do often with our anxiety but talking to a dr or T might add some insight. I was diagnosed with RLS years ago and I cant remember the drug that magically helped me at the moment (I remember Requip). If I forgot my legs hurt so badly and I could hardly be still until it worked. I thought it was a rx to a med combo bc it finally went away and then returned. I started the Requip again and I had some mj side effects. My legs could not be still and I would have to get up and walk until the misery passed so Im thinking this is not RLS for you. I grind my teeth when Im anxious and so maybe this is your body's way of comforting you. Im sorry, it must be so frustrating!
Votes: +2
CA
Cathleen186
2 March 2011
Your comment sc333 is very helpful. escpecially since you acually have it. I can always ask the dc I guess, can't hurt.
UK
ukliz
2 March 2011
Hi Cathleen,
I have suffered from RLS for many years now and I find it is a lot worse at night time, I take Ropinirole 3 times a day with bed time taking the most amount. The legs feel like that you have to keep moving them and to keep stretching them to get relief, but the tablets do work fairly fast. But the best thing I don't have any side affects from this drug, and you can't say that to many drugs. Take care of yourself, Liz.
Votes: +2
CA
Cathleen186
2 March 2011
From your experience does it sound like I have it, or some mild form of RLS?
JK
jk13
2 March 2011
Yup, can honestly say that it is a whole lot worse in the Evening vs. the Daytime... I wonder what my legs would be like if I wasn't taking the Klonopin, I wonder if it would get worse or not, as that would be a good test. Also, I could have sworn that I didn't have the leg thing when I was taking the Requip, but at the same time, it got a lot worse when I started the stimulants. Regardless, there's no way anything would keep me awake at night, as I'm lucky if I stay awake during the day time!
LI
LiverLips
1 March 2011
Hi Cathleen! I'm sorry to hear of your problem. My husband, my step-son and my sister-in-law all have restless leg syndrome. I had never heard of it before 9 years ago. Decades ago it wasn't diagnosed or even discussed much and there weren't any prescribed medications at that time. My husband had mentioned this condition to his doctor for years before finally getting a prescription. He's on his third type of med which seems to be helping him at the moment. He can't remember the name of the first one but he just switched two weeks ago from pramipexole to lyrica. One night he only slept for about an hour because his legs and arms kept jumping so severely.
It's common to notice this syndrome as a child (usually female). Sometimes you're told it's "growing pains". There are different degrees of discomfort or even pain. Not all symptoms are exactly the same either. Generally you'll have an uncontrollable urge to thrash or jerk your legs and/or arms; it's involuntary and very uncomfortable. Cathleen, please read about it on the internet or go to the library to research it if you wish. If I had to give an opinion, I'd say you didn't have RLS. It sounds like more of a comfort thing or habit with you & this doesn't seem to interfere with your sleep. Good luck with your research! All the best to you. from Wendy :)
Votes: +2
CA
Cathleen186
2 March 2011
Hi Wendy, I think you are right, that it is not. I won't even mention it to doc, he'll probably think I'm a hypochondriac
LI
LiverLips
2 March 2011
Personally, I always think that it's best to let your personal physician know what's going on, even if you think it trivial. So many things can be interrelated that it might still be worth mentioning this. Lots of times we're made to think that "it's all in our heads" when that isn't necessarily the best approach or even the right diagnosis. I usually wait until I don't have too many issues & then broach an issue that's "on the back-burner". LOL That way, I'm satisfied and my doctor won't feel overwhelmed by my health complaints and problems. Think about it before dismissing it. If you've had this all your life, it really isn't that trivial now, is it Cathleen? from Wendy :)
My hubby has done this all of his life! I thought he was the only one. So you're not alone! He has depression,(bipoplar) diabetes with leg neuropathy,Fibromyalgia, heart disease, on,&on & on... But he was shaking his leg even as a kid before all the medical showed up. He gets teased by his brothers & sisters about it all the time. He doesn't have an explanation for it either. He now says it's the one the hurts the most, but why before I couldn't tell you. This probably doesn't help you, but lets you know you're not alone! Mary
Votes: +3
JK
jk13
1 March 2011
It is helpful, cause I did it as a kid as well... the more info on this, the better understanding we all have! Thanks!
CA
Cathleen186
1 March 2011
Yes, thank you it does help. Means from all you that to stop worrying about something obviously harmless. But it is interesting how many people do this. So the only difference is the pain with it then?
IN
Inactive
3 March 2011
That's his "excuse" now. ha! It' kinda drives me insane sometimes as you have been told too, but it is harmless. I just asked him again &, he said it is the one that hurts him the most, & it seems to help calm the nerves that hurt. (Little self exercise?) At least now you know you are not alone by all the feedback! Mary
I am the same way Cathleen. So is my mother! I have always shaken my legs-in my case it is both and I dont get itchy or crawly feelings either. My legs just get the "wigglies" as I used to say when I was little. In fact my husband now says he cant sleep unless the bed is shaking from me wiggling my legs. When I sit, I kick one leg back and forth or I will jiggle both! I have had people complain about me shaking whole tables, the car- while sitting at a stop light my whole car jiggles from me moving my legs. I have to be very careful at a movie or something because I will jiggle the whole row!! I never realized it was a syndrome until I came across RLS! I figured it was just my nervous habit. Funny isnt it? I wonder if it has some bearing on us having chronic pain too? Hmmmm.
Votes: +4
CA
Cathleen186
1 March 2011
That's true, if fact the shaking is on the same side (left) that my lower back and hip and sometimes leg has pain from the stenosis. you might be on to something there.
LA
LaurieShay
1 March 2011
Hey Cat,
My hunch is you just have a nervous twitch, but you can read about RLS at this site:
It's usually associated with discomfort of some degree and the movement alleviates the discomfort such as pain.
My girl friend may have RLS, like what you describe, and she takes Requip extended release at night so she doesn't keep herself awake and so her legs don't "jump" during the day.
Does it ever keep you awake? Is it associated with any discomfort?
Well, hope you are doing ok, ttyl
Laurie
Votes: +3
CA
Cathleen186
1 March 2011
Hey Laurie, That's hard to say. Sometimes I have to shake my leg to fall asleep. As a child always, now just a few times. And it is not associated with discomfort, just anxiety, the more anxious I am , the more I shake that leg!!!
IN
Inactive
1 March 2011
Hi Cathleen, I agree with JK on this, it just sounds like a little nervous sort of thing you do. That is wild, some woman yelled at you in a restaurant!!! Hope you told her just where she could go girl... lol sweetlemon
Votes: +2
JK
jk13
1 March 2011
I've actually thought that it might be rls before, but figure other than irritating my wife while watching tv and at night, it doesn't cause any real problems and is why I never really thought much of it, and don't plan on talking to my doc about it. The last thing that I need is more medications, at least in my case. Also, usually disorders are treated if they create an obstacle in your life, and since it hasn't really, I don't care if I have a wiggly leg, that's wiggly without me even noticing. For me, it might also just be the stimulants that I take (was Nuvigil, now Ritilan) in addition to my regular anxiety, and they do a lot more good than harm when taken into perspective.
The Klonopin is suppose to stop rls, and since I don't want to up the dosage, it would have to be a different med, such as the meds commonly used for Parkinson's disease such as requip. I've been on requip before, and omg does that stuff make me tired!! The stimulants don't even stand up to that sort of medication!
CA
Cathleen186
1 March 2011
Hey Sweetlemon, I was a little girl at the time, but my Mom stood up turned around and gave her a mouthful!!!
IN
Inactive
2 March 2011
Cat, I LOVE your Mum !!! Lara
CA
caringsonbj
5 March 2011
Jeff, No, No, No, not the parkinson's drug, WOW is that stuff wicked, side effects, talking about starting a support group there should be one for side effects alone (lol) Billy-
JK
jk13
6 March 2011
Tell me about it! Those were meds with side effects that outweighed the positives in my case, and as a result took them for a relatively short period of time...
Same thing with me.. never thought twice about though, also figured that it was just part of the anxiety... interesting
Votes: +3
CA
Cathleen186
1 March 2011
Maybe we should start a support group lol. Have you ever thought to ask a dc about it? For me, I just thought of it now because RLS is so popular like it's everywhere. Ususally I don't even know I'm doing it. Cathleen
