Just saw the commercial on television about Restless Legs Syndrome.
I have compulsively moved my legs day and night since I was a child. I used to go to sleep with the rhythmic pounding of my leg and foot going side to side on the bed...I'd fall asleep that way. I thought it was normal because I have always lived with it. When I got married, my husband let me know that it was not normal or desirable. He said it was a bad habit I needed to break.
My husband incessantly complained about my shaking legs and even tried to hold them down. I'm so bad that I'll shake the car back and forth while stopped at intersections. I tried to break my bad habit and stop swinging my leg back and forth only to find that my leg now vibrates up and down. I can't stop shaking no matter how hard I try.
Seeing that commercial tonight...what a relief. It reassured me in the same way my aunt reassured me when I was a child and she saw me moving my leg and foot back and forth while I was going to bed. She said she did it and it made me feel normal.
I'm not one that suffers great pain with this condition. I just have to move. I don't sit still long enough to know what it would feel like if I don't move. I try not to disturb my husband at night. Even though I try not to move my legs at night I still find my feet moving. If I don't move my legs, I'll find myself shaking or rubbing my feet, sometimes grinding my toes. Very strange condition indeed.
So this is it?
hi shaken,
its great to finally find out youre not mad isnt it!!! i had the same shock as you, after 30 yrs of thinking it was just me... youre right its a wierd condition and difficult to explain to people which is why we are often misunderstood!
glad you found us, hope you can gain plenty of info, help and support during your stay here. Im sure youve already seen the sticky posts in this section with tonnes of info in them.
feel free to ask any questions etc if you need, theres loads of very knowledgable people on this site!
its great to finally find out youre not mad isnt it!!! i had the same shock as you, after 30 yrs of thinking it was just me... youre right its a wierd condition and difficult to explain to people which is why we are often misunderstood!
glad you found us, hope you can gain plenty of info, help and support during your stay here. Im sure youve already seen the sticky posts in this section with tonnes of info in them.
feel free to ask any questions etc if you need, theres loads of very knowledgable people on this site!
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Shaken
Thanks, Trev...
I'm grateful for the welcome.
I've read some of the research. It seems there is still research being done.
I'm not one for meds in general. If it caused me serious pain, I would take them. Maybe I have a milder case. I wasn't very encouraged when I read that it tends to worsen with age.
I have problems falling and staying asleep. Last night I consciously tried not to move my legs or feet and had muscle twitching. I didn't notice that before. I haven't been that aware or ever tried to stay completely still. *sigh*
I've read some of the research. It seems there is still research being done.
I'm not one for meds in general. If it caused me serious pain, I would take them. Maybe I have a milder case. I wasn't very encouraged when I read that it tends to worsen with age.
I have problems falling and staying asleep. Last night I consciously tried not to move my legs or feet and had muscle twitching. I didn't notice that before. I haven't been that aware or ever tried to stay completely still. *sigh*
hi again,
re meds -everyone finds their own way with this condition, some with meds some feel that they are able to keep a good enough quality of life without... and rls is sooo individual that everyone seems to be different. even different meds seem to affect different people differently. (LOL-how many times can i get the word 'different' in one sentance??)
re worsening with age... it doesnt always worsen with age! there are no answers as to how many people get worse symptoms as they get older and how many don't. One of our devout members (jumpyowl) is doing some research via a questionnaire and im not sure if one of his questions includes this. it'd be interesting to find out though. but i guess really its one day at a time with us!!
re trouble falling asleep read this great post (4th message down)from becat about bedtime routine... it may help..... and also the second message down by viewaskew.
http://www.restlesslegs.org/phpBB2/view ... highlight=
re your attempt at not moving you legs-oh yes... LOL- trying not to move your legs is IMPOSSIBLE!! made me laugh though as ive tried that a few times (before i knew it wasnt just me and found out it was rls!!!)
great to have your input on the forum!
re meds -everyone finds their own way with this condition, some with meds some feel that they are able to keep a good enough quality of life without... and rls is sooo individual that everyone seems to be different. even different meds seem to affect different people differently. (LOL-how many times can i get the word 'different' in one sentance??)
re worsening with age... it doesnt always worsen with age! there are no answers as to how many people get worse symptoms as they get older and how many don't. One of our devout members (jumpyowl) is doing some research via a questionnaire and im not sure if one of his questions includes this. it'd be interesting to find out though. but i guess really its one day at a time with us!!
re trouble falling asleep read this great post (4th message down)from becat about bedtime routine... it may help..... and also the second message down by viewaskew.
http://www.restlesslegs.org/phpBB2/view ... highlight=
re your attempt at not moving you legs-oh yes... LOL- trying not to move your legs is IMPOSSIBLE!! made me laugh though as ive tried that a few times (before i knew it wasnt just me and found out it was rls!!!)
great to have your input on the forum!
When I was a child, my sister and I shared a double bed, till her complaining about me bothered the parents enough to get us twin beds! She'd be so mad, and I was like what??? *BG* I'd go to bed trying to be stiff and still... wasn't going to cross that line! hhhaaa
Glad you had that special Aunt.
Now if I could just see that tv commercial everyone talks about!
Welcome Shaken (((BIG HUGTrevb & Shaken)))) Hazel
Glad you had that special Aunt.
Now if I could just see that tv commercial everyone talks about!
Welcome Shaken (((BIG HUGTrevb & Shaken)))) Hazel
Thanks Hazel and Trev...
You both have been very kind.
Have you been met with skepticism (from family or friends) after sharing the RLS information?
Have you been met with skepticism (from family or friends) after sharing the RLS information?
not really for me personally, i think its nade it easier since i have found out its actually a condition over the last 2 months to be honest.
maybe england is easier with that sort of thing and also it probably helps that im a nurse!! if i talk about rls, people just seem to accept what i say and want to know more.
i know lots of people on this forum havent had such an easy ride though.. with many relationships being tested or even broken thro rls and the difficulty there is in understanding this crazy condition..
have you had some trouble with it or found it easier now you can put a name to it?
maybe england is easier with that sort of thing and also it probably helps that im a nurse!! if i talk about rls, people just seem to accept what i say and want to know more.
i know lots of people on this forum havent had such an easy ride though.. with many relationships being tested or even broken thro rls and the difficulty there is in understanding this crazy condition..
have you had some trouble with it or found it easier now you can put a name to it?
I've had the personal embarrassment of not being able to control my "bad habit" and lived with a fatalistic acceptance of it.
Knowing what it is hasn't seemed to change the way I feel about it...there's something wrong with me that I can't control.
My husband, who is understanding about most things, is skeptical about RLS. He thinks it's a marketing ploy to get more people on drugs. I understand his skepticism because there's been a major marketing explosion from prescription drug manufacturers here in the states to get people to take drugs for all kinds of "new" conditions.
The only lead I have that might help me in controlling RLS is that I've been anemic or border-line anemic all my life. I take iron supplements when I "know" I'm low. I haven't consistently monitored my iron levels or noticed whether taking supplements makes a difference in the RLS. Definitely something to explore.
Knowing what it is hasn't seemed to change the way I feel about it...there's something wrong with me that I can't control.
My husband, who is understanding about most things, is skeptical about RLS. He thinks it's a marketing ploy to get more people on drugs. I understand his skepticism because there's been a major marketing explosion from prescription drug manufacturers here in the states to get people to take drugs for all kinds of "new" conditions.
The only lead I have that might help me in controlling RLS is that I've been anemic or border-line anemic all my life. I take iron supplements when I "know" I'm low. I haven't consistently monitored my iron levels or noticed whether taking supplements makes a difference in the RLS. Definitely something to explore.
Shaken,
Met with skepticism... hmmmm this is something I have kept to myself now is probably a good time to mull this one over. There is that sense of self, quilt, hopelessness, we have developed over quite a few years that even though we have an illness with a name, that hope can be fleeting... it comes and leaves in waves....
For Will and I it has been a relief to finally have a name for the *there is something wrong and it isn't just nerves* physical problems I have experienced. The RLS website has been wonderful as a source of information from all aspects of this illness.
What astounded me was the doctor search, most would nod and accept okay you have RLS without a blink of an eye and scribble out what medication they had stored in their brain from Elavil to a medication for MS. Not one actually discussed RLS with me other than to say *This will help you sleep*.... how could I expect the general population in this area to understand RLS when most doctors, neurologist included thought of it as primarily the inability to sleep.
So it is probably understandable that most people I have shared that I have RLS with do not really understand the disease. Oh you have to move your legs alot? Well no not really, that isn't just what it is... it is much more than that.
The doctor I am seeing now did not know much about RLS but was willing to discuss the information I printed out from the website and brought with me. He is more fixed at the moment on diagnosing me with fibromyalgia. Which I conceede might be very plausible. Yet I am truly thankful as he is willing to work on a treatment protocal based on RLS and Fibro which includes pain management.
However, tell people here in the central plains, you have fibro and they automatically class you as oh so your doctor doesn't know what is wrong with you... though not vocalized it is kinda the feeling you get from their responses that I must be working on that medical disability...
Well, no, I would like to have the ability to a quality of life that I can continue to work till I am eligible for retirement, to complete my hobbies, my goals without the overwhelming fatigue, pain and other physical problems resulting from RLS and fibro.
So I guess I am reluctant to share too much about RLS or fibro at this stage of my diagnosis with too many other than close family ie my children and friends. Now is the gathering of information and learning stage for myself... hopefully at some point I will be able to speak with knowlege...and be understood.
I do think Trevb is right, being a nurse certainly adds credibility to what she says. Also it is possible that with all the televised adds some Americans are over drugged and resenting it. I agree that drug companies are probably driven by the money not the most noble quest. Yet if it weren't for the internet and even though I have not yet seen the RLS commercial... I would still be in that pit looking for the ladder on a regular basis.
Hey I was gone all weekend, so I am wordy today! hahahaha
Love and Healing Light. Hazel
Met with skepticism... hmmmm this is something I have kept to myself now is probably a good time to mull this one over. There is that sense of self, quilt, hopelessness, we have developed over quite a few years that even though we have an illness with a name, that hope can be fleeting... it comes and leaves in waves....
For Will and I it has been a relief to finally have a name for the *there is something wrong and it isn't just nerves* physical problems I have experienced. The RLS website has been wonderful as a source of information from all aspects of this illness.
What astounded me was the doctor search, most would nod and accept okay you have RLS without a blink of an eye and scribble out what medication they had stored in their brain from Elavil to a medication for MS. Not one actually discussed RLS with me other than to say *This will help you sleep*.... how could I expect the general population in this area to understand RLS when most doctors, neurologist included thought of it as primarily the inability to sleep.
So it is probably understandable that most people I have shared that I have RLS with do not really understand the disease. Oh you have to move your legs alot? Well no not really, that isn't just what it is... it is much more than that.
The doctor I am seeing now did not know much about RLS but was willing to discuss the information I printed out from the website and brought with me. He is more fixed at the moment on diagnosing me with fibromyalgia. Which I conceede might be very plausible. Yet I am truly thankful as he is willing to work on a treatment protocal based on RLS and Fibro which includes pain management.
However, tell people here in the central plains, you have fibro and they automatically class you as oh so your doctor doesn't know what is wrong with you... though not vocalized it is kinda the feeling you get from their responses that I must be working on that medical disability...
Well, no, I would like to have the ability to a quality of life that I can continue to work till I am eligible for retirement, to complete my hobbies, my goals without the overwhelming fatigue, pain and other physical problems resulting from RLS and fibro.
So I guess I am reluctant to share too much about RLS or fibro at this stage of my diagnosis with too many other than close family ie my children and friends. Now is the gathering of information and learning stage for myself... hopefully at some point I will be able to speak with knowlege...and be understood.
I do think Trevb is right, being a nurse certainly adds credibility to what she says. Also it is possible that with all the televised adds some Americans are over drugged and resenting it. I agree that drug companies are probably driven by the money not the most noble quest. Yet if it weren't for the internet and even though I have not yet seen the RLS commercial... I would still be in that pit looking for the ladder on a regular basis.
Hey I was gone all weekend, so I am wordy today! hahahaha
Love and Healing Light. Hazel
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Kris
- Posts: 82
- Joined: Fri Jun 03, 2005 5:15 pm
- Location: www.wiresplice.com
Mine was like yours for years. I just bounced and vibrated a lot and it didn't hurt, it bugged me sometimes that I could not get to sleep when I needed to, and the jerky heeby jeebies would get me right as I drifted off.
Then I had a ankle/nerve injury and spent a long time in a cast and mine changed really bad. I didn't even recognize it as RLS. My RlS had just been annoying and I didn't even know RLS as an entity existed.
RLS is a catch all as far as I am concerned. There's a range to this. Its best, I think, if you have it to KNOW you have it and to KNOW what can cause it to get really bad and TO KNOW as much about it as you can.
If you end up with a problem like I have, and it becomes painful, you will at least have a clue and not spend a fortune and a lot of painful, sleepless nights contemplating suicide wandering if you have bone cancer or not.
Then I had a ankle/nerve injury and spent a long time in a cast and mine changed really bad. I didn't even recognize it as RLS. My RlS had just been annoying and I didn't even know RLS as an entity existed.
RLS is a catch all as far as I am concerned. There's a range to this. Its best, I think, if you have it to KNOW you have it and to KNOW what can cause it to get really bad and TO KNOW as much about it as you can.
If you end up with a problem like I have, and it becomes painful, you will at least have a clue and not spend a fortune and a lot of painful, sleepless nights contemplating suicide wandering if you have bone cancer or not.