New to RLS.org but lived with RLS for 30 years...
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chadls74
New to RLS.org but lived with RLS for 30 years...
I am 30 years old, and have been told that even as an infant I could not sit or lie still. As soon as I was old enough to physcially control my body movements I began to rock myself to sleep at night while still moving my legs through out the day. I have managed through sheer will power to stop my night time fetal position rocking down to just my leg and my daytime spasams still continue. Diagnosed with ADHD at the age of nine I have been medicated for most my life. I am now on Stratter and it has done nothing for my daytime movemts but it has seem to curved my nighttime movements so now I only do it for a few minutes before I fall asleep then I stop... and even that is not every night. I hope to try other things and will keep you posted.
New here too
Hi, Rebecca here... I'm new to the site and forum, but I too have suffered from RLS (a liveably mild case) all my life. I remember hours of time my father spent massaging my legs to offer comfort. He suffers the same symptoms. I find long car rides the worst - I just can't move!! I do move my legs a lot in my sleep... my husband sometimes thinks I'm running marathons. Fortunately, it doesn't wake me - and he has his own reasons for not being a good sleeper! I'm just so glad to have found this site, and realize that there is a name and recognition for that horrible sensation in my legs!! I wouldn't call mine pain exactly, but that feeling of my legs having living snakes writhing around inside of them... how do you explain that to people who don't know about this! My husband thought I was kookie when we first met and I mentioned this, but now he understands! I look forward to participating here, and learning more about RLS. 
Chadls74 and Rebecca--
Welcome. Sorry you're suffering, but glad you found us here. Heron's right. It's a great place because you DON'T have to try to explain the "snakes in your legs" and such. And we all seem to be at a little different "place" in the disease, being helped by a little different strategy, etc., so there's lots of food for thought.
Chadls, I'm glad you're sleeping. That's so important for helping you deal with the daytime symptoms. Good luck with your continuing fight with this.
Rebecca, you sound like me. I have a good 20 years of RLS behind me, but thankfully it's been "liveable"... I like that phrase!!
Initially, for about 15 years I'm sure I had it, I would have occasional HORRIBLE evenings of symptoms. But over time, I've ended up with greater frequency (to where now it's pretty much everyday, and most of the day, if not all-- just only really noticeable if I sit), though THANKFULLY not always greater intensity.
In another discussion we were just talking about how other people do or don't understand, and that can be frustrating with a chronic and often progressive condition. Like yours, I think my husband started out thinking it was pretty kooky, but I see glimmers now that he's starting to "get" it a little better. At least he's been kind and sympathetic, even when he hasn't understood.
Take care!
Sara
Welcome. Sorry you're suffering, but glad you found us here. Heron's right. It's a great place because you DON'T have to try to explain the "snakes in your legs" and such. And we all seem to be at a little different "place" in the disease, being helped by a little different strategy, etc., so there's lots of food for thought.
Chadls, I'm glad you're sleeping. That's so important for helping you deal with the daytime symptoms. Good luck with your continuing fight with this.
Rebecca, you sound like me. I have a good 20 years of RLS behind me, but thankfully it's been "liveable"... I like that phrase!!
Initially, for about 15 years I'm sure I had it, I would have occasional HORRIBLE evenings of symptoms. But over time, I've ended up with greater frequency (to where now it's pretty much everyday, and most of the day, if not all-- just only really noticeable if I sit), though THANKFULLY not always greater intensity.
In another discussion we were just talking about how other people do or don't understand, and that can be frustrating with a chronic and often progressive condition. Like yours, I think my husband started out thinking it was pretty kooky, but I see glimmers now that he's starting to "get" it a little better. At least he's been kind and sympathetic, even when he hasn't understood.
Take care!
Sara
Welcome Chadls74 and Rebecca
I'm Jan
Just saw your posts and thought I'd add my two cents worth! Sorry you both have RLS but glad you found us. It is a very frustrating syndrome that a lot of people don't understand at all!!! This is a wonderful place to come to because, FINALLY, you'll find people who don't a) think you're crazy, b) think you're a hypo, and c) think you're just trying to find the "disease of the month". It's real. It's not cancer, but it's the pits, and it's okay to complain!!! After all, when you really get those creepy-crawlies and you can't sleep, people should be glad you're not on top of a building with a machine gun!!! Seriously, some of us only get 3-4 hours of sleep a night and the, it is INTERRUPTED sleep. I've had it for 20 years, and I'm at the stage where I rarely dream. But, we have a young woman on this site who is already using a cane, and when I say young, she's under 30. I'm 57, so I'm really lucky!! If you both decide to join out "family", I think you'll be glad you did. We're all here to help each other!! As one of our members says, we take turns rowing the boat! (I'm paraphrasing, not stealing Becat!!) Ha! Good luck on your journey!
Jan
Just saw your posts and thought I'd add my two cents worth! Sorry you both have RLS but glad you found us. It is a very frustrating syndrome that a lot of people don't understand at all!!! This is a wonderful place to come to because, FINALLY, you'll find people who don't a) think you're crazy, b) think you're a hypo, and c) think you're just trying to find the "disease of the month". It's real. It's not cancer, but it's the pits, and it's okay to complain!!! After all, when you really get those creepy-crawlies and you can't sleep, people should be glad you're not on top of a building with a machine gun!!! Seriously, some of us only get 3-4 hours of sleep a night and the, it is INTERRUPTED sleep. I've had it for 20 years, and I'm at the stage where I rarely dream. But, we have a young woman on this site who is already using a cane, and when I say young, she's under 30. I'm 57, so I'm really lucky!! If you both decide to join out "family", I think you'll be glad you did. We're all here to help each other!! As one of our members says, we take turns rowing the boat! (I'm paraphrasing, not stealing Becat!!) Ha! Good luck on your journey!
Jan
No one is alone who had friends.
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Anonymous
Keep on Rockin' Dude!
I've been rocking myself to sleep all of my life. I find it curious that it comes and goes with no consistency. My wife and I went on a 20 mile hike last weekend (to the top of El Capitan in Yosemite - awesome!) - I figured that would tire'm out, but nope my legs were ready for another 20! Other night's I'm fine. But as long as I can rock myself to sleep, then I'm out in no time. It's not involuntary for me either; I consciously rock. As I fall to sleep I stop, it's like my batteries are wearing out. I go to anther room to sleep when my symptoms show because my wife doesn't need to share in my sleeplessness.
I actually like doing it now; it's just part of falling to sleep. But there are some negatives:
-Can't cuddle with my wife. Rocking is nice, but spoons is better!
-When we're spending the night away from home I'm trapped. However, if ever I do rock myself to sleep in that circumstance it sure gets them talking.
But let's face it, things could be worse. If this is the worst problem I have then life ain't so bad. But it sounds like my RLS is pretty mild compared to yours.
I say keep on rockin' dude!
I actually like doing it now; it's just part of falling to sleep. But there are some negatives:
-Can't cuddle with my wife. Rocking is nice, but spoons is better!
-When we're spending the night away from home I'm trapped. However, if ever I do rock myself to sleep in that circumstance it sure gets them talking.
But let's face it, things could be worse. If this is the worst problem I have then life ain't so bad. But it sounds like my RLS is pretty mild compared to yours.
I say keep on rockin' dude!
I'm New
My name is PJ. I've had RLS for the past 10 years but it has gotten progressively worse during the last year. I've had every blood test in the world - all are normal; EMG shows RLS rather than ALS or MS. I've been taking Klonopin since I was diagnosed, and it helped greatly. But it's losing its effectiveness. I am now taking Klonopin, 1 mg., three times a day and am not sure it's helping much. Is there ANYTHING out there that really helps? The "creepy, crawling, snapping, twitching" sensations are now halfway up my thighs. Neurologist has tried me on Topamax (which sent me into a major depression), Tegretol (which did nothing but make me sick) and Trileptal (which was worse than taking 40 diet pills - I couldn't sleep or hold still at all for 6 hours).
Anything anybody can add would be appreciated!
PJ
Anything anybody can add would be appreciated!
PJ