Hello Everyone,
I don't know how to begin this, so let's see what I can do, first off, I am a woman 47 yrs old.
a few months ago, I was having a bad night, one of many for a whole lot of years, however, I decided one night to search the internet to see if I could find something on restless legs, mind you, I had no idea what I would find, I was looking like most, when you have a headache that does not want to go away, you look for remedies from others, that what I was searching for when I put the words Restless legs in the search field.
I have always had a sleep problem, I can remember having that problem since around 5, and I never associated my sleep problem with my other problem of this restless legs.
So when I found out that my restless legs was a real problem, I was shocked to tell you.
I have it almost every night, I can't say I feel pain...I feel like my legs are cramped and even though I might be mentally tired, my body around 9 pm, feels like it got a jolt of Caffine, and I can't sit still, I have to move, walk, I feel like running, dancing anything to get my body to get tired, even my arms are involved, and if I don't move, then, they start to jerk, and according to my husband, I do a lot of that at night when I do sleep, it was so bad the other night he got up and slept down stairs.
I am always hot, and I noticed, I have to have a fan on me, all the time, and especially on my feet.
When I read the symtoms on this, Oh , I was really upset, other then feeling pain, I have every symtom.
The only pain I have, is when I start moving around at work, then I have to take ibuprofen, because I thought it was age related aches and pains like when you have a fever your body aches, but when I am jumping around, no I have no pain, just very tight muscles that feel like they have to be stretched.
I use to laugh because I thought I was figgety, you know ants in the pants, I can't sit still.
Last night I tried to convince myself there was nothing wrong with me, I could sleep, and well, I can't tell you how many times, my arms and legs jumped and jerked, I rock my self alot especially at night, I try and rock myself to sleep.
I never told my doc, until about 3 years ago about my sleep problem, he gave me Restoril( I slept wonderful and can't say I had any jerking or anything, then again, I was single and no one was around to see or tell me, I was jumpin around in my sleep.
Well Now I am remarried and my poor husband has to go through this.
Since I got remarried, I didn't tell the new doc about my sleep problem, because I didn't want her to think I was a pill popper, or crazy, then again, I didn't care for her attitude when I have bronchitisis, so I was not going to confide in her anything else.
Well now I live in Las Vegas, and when the new insurance kicks in, I have decided to find a doc, who I can tell everything too, including my findings that I might...oh who am I kidding...I know I have RLS, after reading everything on it, I just hope this Doc doesn't think I am crazy.
Any advice would be greatly appreciated, had I not tried to look for a remedy, I would have never known that what my body decides at 9 pm, until the wee hours of the morning, was something a little more serious.
Then again, living on 5 generic tylenol pm's every night to try and make myself sleep, is not good either.
Did any of you feel that telling a doc about your problem, you held back, because you didn't want them to think you were crazy????
I am new as well
Hello and welcome
Hello Unshakeable and Welcome to the board.
Your not crazy, nor alone......You've got all of us as living proof that there is hope and there can be things that are helpful.
First if you don't like the doctor you have and don't trust him/her, ditch them. This disorder requires a good one on one relationship. A partnership that revolves around good communication skills on from both of you.
You don't have to prove RLS, most of the time none of us can. I've had it since childhood and I tried for years to get help. "OOOO growing pains, yeah they go away with time!" Well, I'm 41 yrs. old and I doubt I'm still growing. I'm giving you two links below. The first will be for the RLS Algorithm, it's the Mayo Clinic's guide to disagnosis and treatment for RLS. When you get to that first page. In the upper right hand corner (search box) type in RLS Algorithm, theres a PDF file for you to print off. Keep one for you to get to know and print as many as you need for your doctors. They'll need it unless they know about RLS, few do.
Mayo Clinic's RLS Algorithm:
http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf
This next link is for a list of docs that this foundation has approved of based on their knowledge of RLS. It's done by states, so look to see if there is one close to you.
http://rls.org/provider_directory/
The other thing is, all of us are different just ever so slightly in symptoms and treatments. About 1/2 of us have pain, but not all. There is no mild RLS, if you have it, it sucks. Don't worry that your symptoms don't match up or that one treatment works or not for you. We are so so very different in RLS effects us. We all in the same boat, just not all sitting in the same spot. LOL
Do others in your family suffer with any symptoms as well? You mentioned that yours started very young in life. You may have gotten this by genetics. Could possibly change the diagnosis and treatment plan for you.
Hang in there. Feel free to read everything here and jump in as you please. We learn from one another here. Education and support are key to learning to live the best Quality of Life with RLS.
Welcome and hugs to all.
Your not crazy, nor alone......You've got all of us as living proof that there is hope and there can be things that are helpful.
First if you don't like the doctor you have and don't trust him/her, ditch them. This disorder requires a good one on one relationship. A partnership that revolves around good communication skills on from both of you.
You don't have to prove RLS, most of the time none of us can. I've had it since childhood and I tried for years to get help. "OOOO growing pains, yeah they go away with time!" Well, I'm 41 yrs. old and I doubt I'm still growing. I'm giving you two links below. The first will be for the RLS Algorithm, it's the Mayo Clinic's guide to disagnosis and treatment for RLS. When you get to that first page. In the upper right hand corner (search box) type in RLS Algorithm, theres a PDF file for you to print off. Keep one for you to get to know and print as many as you need for your doctors. They'll need it unless they know about RLS, few do.
Mayo Clinic's RLS Algorithm:
http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf
This next link is for a list of docs that this foundation has approved of based on their knowledge of RLS. It's done by states, so look to see if there is one close to you.
http://rls.org/provider_directory/
The other thing is, all of us are different just ever so slightly in symptoms and treatments. About 1/2 of us have pain, but not all. There is no mild RLS, if you have it, it sucks. Don't worry that your symptoms don't match up or that one treatment works or not for you. We are so so very different in RLS effects us. We all in the same boat, just not all sitting in the same spot. LOL
Do others in your family suffer with any symptoms as well? You mentioned that yours started very young in life. You may have gotten this by genetics. Could possibly change the diagnosis and treatment plan for you.
Hang in there. Feel free to read everything here and jump in as you please. We learn from one another here. Education and support are key to learning to live the best Quality of Life with RLS.
Welcome and hugs to all.
Hi Unshakeable
Hi unshakeable,
I need to add a note to me last post. It's been said to me that the doctor's list on this site is not always your best first choice.
So let me tell you what one, some of our members have done in the past to find a doctor that does know how to work with RLS.
You can always call the doctor's office and ask to speak to the asst. (P.A.) or the nurse. Ask if this doctor or group of doctors has knowledge and experience dealing with RLS. It might save you some time and money to call ahead and ask.
Sleep Doctors and Neurologist are your two best likely choices. That is not to say that other docs., including your GP can't be helpful. I have even found a doc in a box that knew tons about RLS.
Sorry for the confusion as this was just brought to my attention.
I need to add a note to me last post. It's been said to me that the doctor's list on this site is not always your best first choice.
So let me tell you what one, some of our members have done in the past to find a doctor that does know how to work with RLS.
You can always call the doctor's office and ask to speak to the asst. (P.A.) or the nurse. Ask if this doctor or group of doctors has knowledge and experience dealing with RLS. It might save you some time and money to call ahead and ask.
Sleep Doctors and Neurologist are your two best likely choices. That is not to say that other docs., including your GP can't be helpful. I have even found a doc in a box that knew tons about RLS.
Sorry for the confusion as this was just brought to my attention.
-
unshakeable me
answering your response Becat
Ok,I hope I pushed the right button to respond back,
First Off THANK YOU BECAT, for answering my posted message, I will call a head and find out if the Doc deals with RLS, right now I am very tired, and it is only 9:45 am here in Las Vegas.
I have had some really bad nights of tossing and turning and getting up constantly, fortunatly I got the day off from work, so I will try and clean some and then try and catch up on sleep.
you asked if anyone else in my family has RLS, well I don't think so, I don't know anyone else who has any problems with sleep, or jerking legs.
How ever my grand daughter does get leg pains, bad enough she had to have a hot water bottle put on them at night, her doctor told her mother, it was growing pains, caused by growth spurts, I told my daughter about RLS, and she is going to watch Lexus now, my baby girl is only 7, and has had this pain off and on for a couple of years now...
She is tall for a 7 year old, so I am hoping that it is just that, growth spurts, but other then that, no.
My husband thinks I should change my screen name from unshakeable me to "Just for kicks", because of the jerking of my legs at night.
I will check out the sites you recommend, again thank you for your warm welcome into this very special club, you know, I realize there are so many syndromes out there, I don't understand why I had never heard of Restless Legs Syndrome, why hasn't it ever been talked about on TV, or news papers, like so many other things?
Like I said if I had not been having a real bad night , and was looking for a remedy to ease the tension in my muscles, I would have never known about RLS.
Have a relaxing day Becat, if you can.
First Off THANK YOU BECAT, for answering my posted message, I will call a head and find out if the Doc deals with RLS, right now I am very tired, and it is only 9:45 am here in Las Vegas.
I have had some really bad nights of tossing and turning and getting up constantly, fortunatly I got the day off from work, so I will try and clean some and then try and catch up on sleep.
you asked if anyone else in my family has RLS, well I don't think so, I don't know anyone else who has any problems with sleep, or jerking legs.
How ever my grand daughter does get leg pains, bad enough she had to have a hot water bottle put on them at night, her doctor told her mother, it was growing pains, caused by growth spurts, I told my daughter about RLS, and she is going to watch Lexus now, my baby girl is only 7, and has had this pain off and on for a couple of years now...
She is tall for a 7 year old, so I am hoping that it is just that, growth spurts, but other then that, no.
My husband thinks I should change my screen name from unshakeable me to "Just for kicks", because of the jerking of my legs at night.
I will check out the sites you recommend, again thank you for your warm welcome into this very special club, you know, I realize there are so many syndromes out there, I don't understand why I had never heard of Restless Legs Syndrome, why hasn't it ever been talked about on TV, or news papers, like so many other things?
Like I said if I had not been having a real bad night , and was looking for a remedy to ease the tension in my muscles, I would have never known about RLS.
Have a relaxing day Becat, if you can.
Hi, Unshakeable--
Hope you get some rest today. Add my welcome to Becat's. Not an elite group you WANTED to be part of, I know
, but you're welcome here jsut the same. We have to stick together. 
About your granddaughter... our 13 year old has RLS. Not horrible, but it gets pretty disturbing if it's sick or stays up late. I HOPE along with you that Lexus' troubles are only growing pains. But try to remember, too, that if she DOES end up having RLS, the fact that you and her mom know what it might be is a BIG advantage for her. Someone will understand, and might be able to help.
And even if you can't help much, not criticizing her for being "fidgety" and being sympathetic about her discomfort is DEFINITELY worth something. Many of us here were scolded for being wiggly, misunderstood for some of our other RLS-related habits. I didn't realize that our son might have RLS until about a year ago, but when I found out, I was really relieved that I had always tried to be good-natured about some of his wiggling and jiggling habits. You and Lexus' mom will be able to be understanding about that, if that turns out to be the case.
I think that's worth a lot. Like you said, many of us happen to hear about RLS by accident (I did) after years of suffering. How much better for her IF that's what she's facing, to know early on.
Take good care.
Sara
Hope you get some rest today. Add my welcome to Becat's. Not an elite group you WANTED to be part of, I know
, but you're welcome here jsut the same. We have to stick together.
About your granddaughter... our 13 year old has RLS. Not horrible, but it gets pretty disturbing if it's sick or stays up late. I HOPE along with you that Lexus' troubles are only growing pains. But try to remember, too, that if she DOES end up having RLS, the fact that you and her mom know what it might be is a BIG advantage for her. Someone will understand, and might be able to help.
And even if you can't help much, not criticizing her for being "fidgety" and being sympathetic about her discomfort is DEFINITELY worth something. Many of us here were scolded for being wiggly, misunderstood for some of our other RLS-related habits. I didn't realize that our son might have RLS until about a year ago, but when I found out, I was really relieved that I had always tried to be good-natured about some of his wiggling and jiggling habits. You and Lexus' mom will be able to be understanding about that, if that turns out to be the case.
I think that's worth a lot. Like you said, many of us happen to hear about RLS by accident (I did) after years of suffering. How much better for her IF that's what she's facing, to know early on.
Take good care.
Sara
-
unshakeable me
Hi Sare, thank you
Hi Sara,
I enjoyed your response, I really hope Lexus does not have this, I wouldn't wish this on anyone, to answer your question, No I didn't get any rest after all, I reached a point where I was over tired.
I don't know what I hate the most, the tossing and turning for hours or the jerking my legs and arms do, it's like when I finally get to sleep, I might get a strong enough jerk, that it wakes me from the sleep, like if I just had a bad dream and jumped up in fear, really bad, I thought maybe for the longest time, it was a pinched nerve that caused the jerking, until my husband in formed me, I had no idea I constantly jumped and jerked in my sleep, just about all night long.
The other day, I experienced the urge to start moving while I was in the car with my husband, that was something new for me, usually it is at night, never fails between 9 and 9:15, I feel like I just took a whole bunch of Caffeine and I have to move my body, arms, legs, mostly legs, I rock in a chair, not forward, but I rock sideways, and I start moving around in a chair side to side, to get relief and if that doesn't work, then I get out of the chair and wander around, in hopes it will be over soon, I usually finally have to take yet another generic tylenol pm, (total of 5)before I can actually get tired enough and last night it was after 2 before I fell a sleep, I use to have cold hands and feet, had to wear socks to bed, then when I turned 40, I started having hot flashes, I thought I was going through the change, but two docs and blood work confirmed I wasn't, ok, then, why do I get night sweats and sudden flashes of heat, and I no longer have cold hands and feet, now I am hot all the time, especially my feet, I have to sleep with a fan on my feet all the time.
I came from NJ, before I moved to Las Vegas, I think I was the only one in the state who had an sir conditioner on in the winter, and had to open a window in the dead of winter when the temp was in the teens, because I can't stand the heat....I can't believe, I moved to Vegas, it gets real hot here, and I am trying to deal with the heat.... I hope I get use to it.
I don't know what it is like to just sit and watch a movie, I constantly get up and walk off, that is why I always thought ok, I get fidgety, I got ants in my pants, because I can't sit still.
Sleep????? What's that?????I use to get in trouble because I was always up when others slept and I still can remember at age 5, being told to knock it off, because I moved all the time, I just thought I had a sleep problem, I never associated my constant movement with it being part of RLS, I just thought I had a brain that never shut down, I was even told that this was my problem,and that is why my Doc put me on Restoril, man, that was the best sleep I could ask for, I was out by 8 or 9 pm, and to make sure I didn't get addicted to Restoril, I didn't take it on the week ends....only to be wide a wake once more if I didn't take it.
Right now as I write this, yes, I am in RLS Mode, moving around, getting up to walk around, in between writing this.
I almost have a frustration feeling, like I have no patience right now.
There seems to be no one here in Vegas, that has a group, where I can go and talk with others in this situation.
Sara was your RLS confirmed by a Doc?
This is me right now
I hope I sleep tonight I need it, I have work in the morning.
Have a good day or night, which ever you get when you are reading this.
I enjoyed your response, I really hope Lexus does not have this, I wouldn't wish this on anyone, to answer your question, No I didn't get any rest after all, I reached a point where I was over tired.
I don't know what I hate the most, the tossing and turning for hours or the jerking my legs and arms do, it's like when I finally get to sleep, I might get a strong enough jerk, that it wakes me from the sleep, like if I just had a bad dream and jumped up in fear, really bad, I thought maybe for the longest time, it was a pinched nerve that caused the jerking, until my husband in formed me, I had no idea I constantly jumped and jerked in my sleep, just about all night long.
The other day, I experienced the urge to start moving while I was in the car with my husband, that was something new for me, usually it is at night, never fails between 9 and 9:15, I feel like I just took a whole bunch of Caffeine and I have to move my body, arms, legs, mostly legs, I rock in a chair, not forward, but I rock sideways, and I start moving around in a chair side to side, to get relief and if that doesn't work, then I get out of the chair and wander around, in hopes it will be over soon, I usually finally have to take yet another generic tylenol pm, (total of 5)before I can actually get tired enough and last night it was after 2 before I fell a sleep, I use to have cold hands and feet, had to wear socks to bed, then when I turned 40, I started having hot flashes, I thought I was going through the change, but two docs and blood work confirmed I wasn't, ok, then, why do I get night sweats and sudden flashes of heat, and I no longer have cold hands and feet, now I am hot all the time, especially my feet, I have to sleep with a fan on my feet all the time.
I came from NJ, before I moved to Las Vegas, I think I was the only one in the state who had an sir conditioner on in the winter, and had to open a window in the dead of winter when the temp was in the teens, because I can't stand the heat....I can't believe, I moved to Vegas, it gets real hot here, and I am trying to deal with the heat.... I hope I get use to it.
I don't know what it is like to just sit and watch a movie, I constantly get up and walk off, that is why I always thought ok, I get fidgety, I got ants in my pants, because I can't sit still.
Sleep????? What's that?????I use to get in trouble because I was always up when others slept and I still can remember at age 5, being told to knock it off, because I moved all the time, I just thought I had a sleep problem, I never associated my constant movement with it being part of RLS, I just thought I had a brain that never shut down, I was even told that this was my problem,and that is why my Doc put me on Restoril, man, that was the best sleep I could ask for, I was out by 8 or 9 pm, and to make sure I didn't get addicted to Restoril, I didn't take it on the week ends....only to be wide a wake once more if I didn't take it.
Right now as I write this, yes, I am in RLS Mode, moving around, getting up to walk around, in between writing this.
I almost have a frustration feeling, like I have no patience right now.
There seems to be no one here in Vegas, that has a group, where I can go and talk with others in this situation.
Sara was your RLS confirmed by a Doc?
This is me right now
I hope I sleep tonight I need it, I have work in the morning.
Have a good day or night, which ever you get when you are reading this.
-
Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Hi Unshakeable.
You've received replies from just two of the nicest people you'll ever want to meet.
I also do not have a support group that I can go to, so that is why I come here! The days start to run together and the pain is so bad sometimes. I do cry a lot, but mostly because I hate having my 14 year old see me like this.
Your granddaughter sounds like she has it. My Mom used to tell me mine was "growing pains" as well. I honestly believe I went into "remission" until I had my epidural when I had my daughter. Seems I haven't slept since! She slept thru the night the first night we were home, so it's not because of her.
Always say what you are feeling, WE UNDERSTAND.
I don't know what I would do with out the ladies and gentlemen of this forum. They are awesome!
Loves
Penguin
You've received replies from just two of the nicest people you'll ever want to meet.
I also do not have a support group that I can go to, so that is why I come here! The days start to run together and the pain is so bad sometimes. I do cry a lot, but mostly because I hate having my 14 year old see me like this.
Your granddaughter sounds like she has it. My Mom used to tell me mine was "growing pains" as well. I honestly believe I went into "remission" until I had my epidural when I had my daughter. Seems I haven't slept since! She slept thru the night the first night we were home, so it's not because of her.
Always say what you are feeling, WE UNDERSTAND.
I don't know what I would do with out the ladies and gentlemen of this forum. They are awesome!
Loves
Penguin
Beware the Penguin
Hello, again, Unshakeable--
Nope, I've not gone to the doctor for my RLS. When you read the literature about classic RLS symptoms, I have them all. I have a milder case of RLS than a lot of the people here do, but actually some of what you hear here is more severe than most information about RLS would indicate, and more serious than maybe a majority of docs take this condition. It just shows how IMPORTANT it is for us to make our stories known to doctors and researchers so that they FULLY understand the far-reaching effects and potential for progression of RLS.
Anyway, when I first heard about RLS, from overhearing some friends talk about it, I went on-line to read about the symptoms because it SOUNDED just from the name so much like what I was experiencing. It happened almost always at night at that time. I had memories of RLS attacks that were horrible when I had the flu and/or was taking cold/flu medicine. Mine was mostly in my feet and lowest extremes of my legs. The symptoms were getting more frequent/stronger/more disturbing with age. And so on....
A couple of years after I did that initial research, my symptoms progressed even more. I was starting to have bouts of RLS that were 24/7. So I looked on the intenet again for more information and eventually ended up here. After hearing more personal stories, there was no question in my mind what my problem is.
The reason I've not gone to a doctor is that in my experience with another chronic condition, usually doctors want to give you medications... and I'm not prepared to take meds yet for my RLS. I tend to be tremendously chemically-sensitive, so I ened up with every side effect known to man anytime I take Rx or OTC meds. I'm uncomfortable a lot of the time, but not yet ready to risk the side effects for a shot at medical relief. Since I'm not ready to take meds, I've educated myself about this condition, and unless I find an exceptional doctor, he probably won't have any better knowledge or ideas than I do... I'm just going to wait for now.
I was interested in your comments about jolting awake like you had had a really fearful dream. Periodically in my life I have had occasional dreams where I fall off curbs, trip over planters, and things like that. Because I wake with a physical jerk, I have wondered a bit if I was physically moving, rather than just dreaming of moving.
I've spent a fair number of days and nights in Vegas, and I know just what you were saying about the cold winter nights when you had the fan on. That has to be so miserable. I don't get the hot feet part, but both my auntie and my grandfather did and found it REALLY disturbing. (There are some other discussion threads about that if you look back at old messages on the forum).
Sorry to hear about your uncomfortable car ride with your husband. I find riding in the car quite uncomfortable, especially at night, and especially if I'm tired and/or we're gaining elevation (I have all three of those conditions when we come home after family dinners. )
Others here also feel like their brains never shut down. I was always that way, so I got in the habit early of reading to fall asleep. My dad would come in later to put away my book and turn off my light. If they made me lay in the dark, I'd NEVER have gotten to sleep. I don't recall specific RLS sensations before a really bad episode I had when I was 18 and had a horrible flu, but I did have growing pains, and I know that "my foot thing" was a familiar sensation over a lot of years. I just assumed that that was an idiosyncracy of my own body. NEVER thought it was a condition anyone else also had.
It's sad all the people here who were misunderstood as kids (and often complained about now by spouses, etc.) because people either have not heard of RLS or don't realize it's a really serious, life-altering condition. You're obviously suffering so, and lost a lot of years of rest that you really needed. I sure wish you well in finding a good doc there in Vegas. A few of our members here have recently found very caring and knowledgeable doctors, and it's made a difference in their quality of life. I hope that youll find a similar situation.
Try to take care, and as always I'll be hoping for you to get some rest.
Sara
Nope, I've not gone to the doctor for my RLS. When you read the literature about classic RLS symptoms, I have them all. I have a milder case of RLS than a lot of the people here do, but actually some of what you hear here is more severe than most information about RLS would indicate, and more serious than maybe a majority of docs take this condition. It just shows how IMPORTANT it is for us to make our stories known to doctors and researchers so that they FULLY understand the far-reaching effects and potential for progression of RLS.
Anyway, when I first heard about RLS, from overhearing some friends talk about it, I went on-line to read about the symptoms because it SOUNDED just from the name so much like what I was experiencing. It happened almost always at night at that time. I had memories of RLS attacks that were horrible when I had the flu and/or was taking cold/flu medicine. Mine was mostly in my feet and lowest extremes of my legs. The symptoms were getting more frequent/stronger/more disturbing with age. And so on....
A couple of years after I did that initial research, my symptoms progressed even more. I was starting to have bouts of RLS that were 24/7. So I looked on the intenet again for more information and eventually ended up here. After hearing more personal stories, there was no question in my mind what my problem is.
The reason I've not gone to a doctor is that in my experience with another chronic condition, usually doctors want to give you medications... and I'm not prepared to take meds yet for my RLS. I tend to be tremendously chemically-sensitive, so I ened up with every side effect known to man anytime I take Rx or OTC meds. I'm uncomfortable a lot of the time, but not yet ready to risk the side effects for a shot at medical relief. Since I'm not ready to take meds, I've educated myself about this condition, and unless I find an exceptional doctor, he probably won't have any better knowledge or ideas than I do... I'm just going to wait for now.
I was interested in your comments about jolting awake like you had had a really fearful dream. Periodically in my life I have had occasional dreams where I fall off curbs, trip over planters, and things like that. Because I wake with a physical jerk, I have wondered a bit if I was physically moving, rather than just dreaming of moving.
I've spent a fair number of days and nights in Vegas, and I know just what you were saying about the cold winter nights when you had the fan on. That has to be so miserable. I don't get the hot feet part, but both my auntie and my grandfather did and found it REALLY disturbing. (There are some other discussion threads about that if you look back at old messages on the forum).
Sorry to hear about your uncomfortable car ride with your husband. I find riding in the car quite uncomfortable, especially at night, and especially if I'm tired and/or we're gaining elevation (I have all three of those conditions when we come home after family dinners.
)
Others here also feel like their brains never shut down. I was always that way, so I got in the habit early of reading to fall asleep. My dad would come in later to put away my book and turn off my light. If they made me lay in the dark, I'd NEVER have gotten to sleep. I don't recall specific RLS sensations before a really bad episode I had when I was 18 and had a horrible flu, but I did have growing pains, and I know that "my foot thing" was a familiar sensation over a lot of years. I just assumed that that was an idiosyncracy of my own body. NEVER thought it was a condition anyone else also had.
It's sad all the people here who were misunderstood as kids (and often complained about now by spouses, etc.) because people either have not heard of RLS or don't realize it's a really serious, life-altering condition. You're obviously suffering so, and lost a lot of years of rest that you really needed. I sure wish you well in finding a good doc there in Vegas. A few of our members here have recently found very caring and knowledgeable doctors, and it's made a difference in their quality of life. I hope that youll find a similar situation.
Try to take care, and as always I'll be hoping for you to get some rest.
Sara
-
unshakeable me
reply to Penquin
Hi Penquin,
It's nice to know that so many others really care and are there to help or just listen to me.
You have pain....I am glad I do not experience this, although the only discomfort I feel during the day, the only way I can describe it is, you know when you have a fever, how everything aches, well that is the only discomfort I feel, and I live on Ibuprofen twice a day to take the discomfort away, and when it wears off, until the next dose kicks in, my muscles and joints really ache, but I think it's with age that I have this.
Don't cry Penquin, I am sure your child understands and I am sure she wishes she could take the pain away from you so you don't hurt anymore.
Gee if ever I was to join a club...I guess I joined a really great one here,
Well I manage to get some sleep, well with the help of 5 generic tylenol PM's, but at least I slept, which is something I really needed.
I look forward to seeing a doc so maybe I can get back on Restoril, which I haven't had in over two years, I have been living on generic for that long, sometimes it works sometimes it doesn't, when it doesn't then I am up for hours and walking around, rocking sideways, wishing I could go to sleep, most times, I get out of bed, I am so mentally tired, I sit up, then lay down, then sit up again, I am too tired to leave the room and bed, but I always lose that round and I force myself to just leave the bed and room for a while to walk around down stairs.
I envie those who can just lay there head down and out they go in to La La Land.
Other then Restoril for sleep, I don't care to take other meds, I am fine with Ibuprofen, I have a bad back, a fractured vertebrae in the 5th lumbar that never healed right, so my old Doc who I just adore, had me on Ultram and a few other pain killers for the back pain, so I know about a few of those, Ultram, made me sleepy, like I was stoned, so I can't take anything like that during the day, so Ibuprofen will do.
Say Penquin what part of the country do you reside in?
hope to hear from you soon, and wishing you so much peace and better days to come.
Unshakeable Me
It's nice to know that so many others really care and are there to help or just listen to me.
You have pain....I am glad I do not experience this, although the only discomfort I feel during the day, the only way I can describe it is, you know when you have a fever, how everything aches, well that is the only discomfort I feel, and I live on Ibuprofen twice a day to take the discomfort away, and when it wears off, until the next dose kicks in, my muscles and joints really ache, but I think it's with age that I have this.
Don't cry Penquin, I am sure your child understands and I am sure she wishes she could take the pain away from you so you don't hurt anymore.
Gee if ever I was to join a club...I guess I joined a really great one here,
Well I manage to get some sleep, well with the help of 5 generic tylenol PM's, but at least I slept, which is something I really needed.
I look forward to seeing a doc so maybe I can get back on Restoril, which I haven't had in over two years, I have been living on generic for that long, sometimes it works sometimes it doesn't, when it doesn't then I am up for hours and walking around, rocking sideways, wishing I could go to sleep, most times, I get out of bed, I am so mentally tired, I sit up, then lay down, then sit up again, I am too tired to leave the room and bed, but I always lose that round and I force myself to just leave the bed and room for a while to walk around down stairs.
I envie those who can just lay there head down and out they go in to La La Land.
Other then Restoril for sleep, I don't care to take other meds, I am fine with Ibuprofen, I have a bad back, a fractured vertebrae in the 5th lumbar that never healed right, so my old Doc who I just adore, had me on Ultram and a few other pain killers for the back pain, so I know about a few of those, Ultram, made me sleepy, like I was stoned, so I can't take anything like that during the day, so Ibuprofen will do.
Say Penquin what part of the country do you reside in?
hope to hear from you soon, and wishing you so much peace and better days to come.
Unshakeable Me
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unshakeable me
Reply to Sara
Hi Sara,
Well Now you know, you weren't dreaming when you jolted yourself right into being awake, it happens a lot, not in one night per say, but several times a week at least once a night, I am jolted awake.
In answer to it being miserable to have to sleep with a fan on my feet and body, If I don't get the relief I need from the fans and right now there are 4 in my room, all facing all sides of me, and if that doesn't work, the Ac get's turned on as well, so I can get relief, and I get real angry if I have to turn the AC on, because then I feel like my Husband doesn't understand my need to cool off, I don't say anything to him, but I feel the angre building until I get relief.
Like if he doesn't care, but I know he does, he worries about me and the lack of sleep I get, but at that one moment when I have to get up and turn on the air, well that is my moment to get mad.
Now for my brain not shutting off at night, well it actually thinks about what conspired during the day, what was said, what was done, then what will the out come be tomorrow, it's like it does all these scenarios for the next day, very frustrating, especially if I had a bad day at work.
Sometimes I would leave the lights on, just to force myself to go to sleep, if the lights were on, then I had to close my eyes and keep them closed or I would have to look at the light hanging from my ceiling , so it has worked a few times in the past, when I was single, now that I am remarried, well I can't do that trick no more.
I fully understand about thinking your problem with RLS, was something just you had and you felt it was part of just you, something you did, or felt, I never thought my problem was part of something more serious and the sleep problem being part of it either, I just thought my rocking and moving around was something I have always done since a child, the no sleeping as well, I would tell people I have a sleep disorder, that I had a brain that never shut down, thinking ok, it's natural for a lot of people to have a sleep disorder.
Now If I tell someone about RLS, I think they think I am crazy, no one has heard of this, well except my sister, which surprised me when I told her I think I have this, she told me she had heard of RLS, and to be honest, I would rather have this, then what my real mother's family have, Huntingtons Disease, I looked up the symptoms, because I was afraid that I was showing those symptoms, and to me, watching my own grandmother who had this suffered and then died from it, that is something I pray God will spare me, I am hoping I have my fathers genes, that they are stronger and besides the symptoms I have are just about all the signs of RLS, except the pain and my husband read the symptoms as well and said I have just about all the symptoms and I have had these symptoms from what I can remember age 5.
I know there is a test that can tell me if I carry the gene, but I have been afraid to take the test, I know it can skip a generation, and women are suppose to be the carriers, but my great grand mother didn't have it, but her daughter did, and so did one of her sons, now I was told a few years ago, my mothers brother has it, and since I do not talk to my real mother, my step father told me she was showing signs of it a few years ago, but I think she is just evil
, and my step dad just wanted me to feel sorry for her, so he uses this as an excuse for her nasty behavior.
Ok, well it is kinda late right now, soI guess I will close this for now, I hope you have a good day Sara, one filled without a real bad day from RLS.
I think someone should write Oprah and maybe she will bring RLS out of the internet and into the public, she does request stories such as this to investigate and bring on a show...
Maybe someone should inform her and maybe it can be done.
Ok, Remember to Thank God for all your blessing,
Love to you and all who suffer in silence with RLS, may the force be with us always.
Unshakeable me
Well Now you know, you weren't dreaming when you jolted yourself right into being awake, it happens a lot, not in one night per say, but several times a week at least once a night, I am jolted awake.
In answer to it being miserable to have to sleep with a fan on my feet and body, If I don't get the relief I need from the fans and right now there are 4 in my room, all facing all sides of me, and if that doesn't work, the Ac get's turned on as well, so I can get relief, and I get real angry if I have to turn the AC on, because then I feel like my Husband doesn't understand my need to cool off, I don't say anything to him, but I feel the angre building until I get relief.
Like if he doesn't care, but I know he does, he worries about me and the lack of sleep I get, but at that one moment when I have to get up and turn on the air, well that is my moment to get mad.
Now for my brain not shutting off at night, well it actually thinks about what conspired during the day, what was said, what was done, then what will the out come be tomorrow, it's like it does all these scenarios for the next day, very frustrating, especially if I had a bad day at work.
Sometimes I would leave the lights on, just to force myself to go to sleep, if the lights were on, then I had to close my eyes and keep them closed or I would have to look at the light hanging from my ceiling
, so it has worked a few times in the past, when I was single, now that I am remarried, well I can't do that trick no more.
I fully understand about thinking your problem with RLS, was something just you had and you felt it was part of just you, something you did, or felt, I never thought my problem was part of something more serious and the sleep problem being part of it either, I just thought my rocking and moving around was something I have always done since a child, the no sleeping as well, I would tell people I have a sleep disorder, that I had a brain that never shut down, thinking ok, it's natural for a lot of people to have a sleep disorder.
Now If I tell someone about RLS, I think they think I am crazy, no one has heard of this, well except my sister, which surprised me when I told her I think I have this, she told me she had heard of RLS, and to be honest, I would rather have this, then what my real mother's family have, Huntingtons Disease, I looked up the symptoms, because I was afraid that I was showing those symptoms, and to me, watching my own grandmother who had this suffered and then died from it, that is something I pray God will spare me, I am hoping I have my fathers genes, that they are stronger and besides the symptoms I have are just about all the signs of RLS, except the pain and my husband read the symptoms as well and said I have just about all the symptoms and I have had these symptoms from what I can remember age 5.
I know there is a test that can tell me if I carry the gene, but I have been afraid to take the test, I know it can skip a generation, and women are suppose to be the carriers, but my great grand mother didn't have it, but her daughter did, and so did one of her sons, now I was told a few years ago, my mothers brother has it, and since I do not talk to my real mother, my step father told me she was showing signs of it a few years ago, but I think she is just evil
, and my step dad just wanted me to feel sorry for her, so he uses this as an excuse for her nasty behavior.
Ok, well it is kinda late right now, soI guess I will close this for now, I hope you have a good day Sara, one filled without a real bad day from RLS.
I think someone should write Oprah and maybe she will bring RLS out of the internet and into the public, she does request stories such as this to investigate and bring on a show...
Maybe someone should inform her and maybe it can be done.
Ok, Remember to Thank God for all your blessing,
Love to you and all who suffer in silence with RLS, may the force be with us always.
Unshakeable me