Explaining RLS to your family

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
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SquirmingSusan
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Postby SquirmingSusan » Mon May 04, 2009 10:21 pm

It has always been strange to me that mine kicks into high gear around 1-2am and then when the sun starts to come up somewhere between 6and7am i fall asleep because it lets up on me. Does anyone else experience this?


Oh yeah. I'm sure that having RLS is the root cause of my circadian rhythm disorder, although that seems to have taken on a life of its own. I can almost always get to sleep between 4am-6am or so and then sleep all day long.
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ViewsAskew
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Postby ViewsAskew » Mon May 04, 2009 10:28 pm

Yeah RLS is circadian - worst between 8 or 9 PM and until early morning. By about 3- 5 AM, most of us are ready for sleep. For me, it's more like 5-6 AM, but I have a delayed clock anyway.

Your stories are funny, sad, scary, and enlightening, all at the same time.
Ann - Take what you need, leave the rest

Managing Your RLS

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Betty/WV
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Re: Falling asleep around 5am

Postby Betty/WV » Tue May 05, 2009 10:18 am

Hey: Just read your posts about RLS hitting early evening and not being able to sleep until early morning. Same with me, I always said, "I fall asleep when the birds sing". :? One of the parts of RLS where we are all the same. Weird thing this RLS. :shock: When I started coming to this site is when I started understanding RLS and myself. I didn't know why I was the way I was. I was really hard on myself. I still am, but I understand better. Wish you all a good nights sleep. BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

rlsgirl
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Postby rlsgirl » Tue May 05, 2009 6:18 pm

It is a very frustrating condition.....I tell you what gets me the most about people. When people ask me why i'm so tired or I look so dark under my eyes, I tell them that I have RLS and sometimes I don't sleep at all during the night but maybe an hour or two. They always say.....oh, i've had that before just hang in there and it will go away.....have you tried eating a banana before you go to bed, or maybe taking a sleeping pill? LOL HOly mother of god I just think to myself "why in the world did I even bring those three letters up"? LOL Some people say "I had that when I was pregnant but it wasn't that bad it will go away after a while". LOL NOT! I get tired of talking about it to people. Especially people who have had it at some time or another and think they understand it and have the cure for it. OMG if they only knew. If they only knew that there have been so many nights that I have taken a combination of medications hoping that it would just knock the hell out of me and pray that I would wake up in the morning or in the middle of the night. LOL :roll:

My two experiences with my sleep fall outs were very funny to me. Not so much to my family or my boss but I thought it was rather funny. And it was great that I got some sleep! LOL They don't see it that way. Heck, I have fallen asleep at the beach before in one of those dead sleeps and just fried my skin in the sun. Now I make sure I put on sunscreen in the even that I do go to sleep like that and no one is with me to wake me up. LOL I don't have to worry about that now that i'm on something that allows me to go night night. :D

ViewsAskew
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Postby ViewsAskew » Tue May 05, 2009 6:46 pm

People love to be helpful, don't they? Oh, I know what you should do...Oh, it's easy, just do....etc. It's a great reminder to me that I should never do that to anyone else about anything. There's a great chance I'd be off base.

I often don't use those three letters if I can avoid it. I say I have a neurological movement disorder. I tell them about PLMs, about the circadian rhythm issues. If they ask enough questions that I'm forced to say those three letters, I preface it by saying that about 2% of the people who have it are dealt a very severe form of it and that the things that help people with a milder form do not help those of us with a severe form. That can help some.

But, I often prefer not talking about it.
Ann - Take what you need, leave the rest



Managing Your RLS



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Polar Bear
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Postby Polar Bear » Tue May 05, 2009 8:54 pm

I also get weary explaining myself. Tho thankfully my friends all just accept me and my 'legs', but it gets more and more that I hate to use the term rls. It sounds trivial and as if it is no more than feeling fidgety for a few minutes. Never mind starting to explain... well actually... there's also my arms.. occasionally the shoulder etc. etc. The rls term goes nowhere to describing the anguish and torture.

And yes, more and more I am also saying that I have a neurological movement disorder.
Betty
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rlsgirl
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Postby rlsgirl » Tue May 05, 2009 9:00 pm

ViewsAskew wrote:People love to be helpful, don't they? Oh, I know what you should do...Oh, it's easy, just do....etc. It's a great reminder to me that I should never do that to anyone else about anything. There's a great chance I'd be off base.

I often don't use those three letters if I can avoid it. I say I have a neurological movement disorder. I tell them about PLMs, about the circadian rhythm issues. If they ask enough questions that I'm forced to say those three letters, I preface it by saying that about 2% of the people who have it are dealt a very severe form of it and that the things that help people with a milder form do not help those of us with a severe form. That can help some.

But, I often prefer not talking about it.


What is circadian rhythm? I have never heard of that until I just saw it from you.

ViewsAskew
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Postby ViewsAskew » Tue May 05, 2009 9:23 pm

Our sleep cycles are regulated by a complex mechanism in our bodies. Hormones and brain chemicals tell us, "It's time to sleep" or "It's time to get up."

This is commonly based on a 24 hour clock. It's called the circadian rhythm. After dusk sometime, based on darkness, hormones and chemicals, our brain gets signals to go to sleep and we get sleep.

But, some people have problems with that 24 hour clock. Some people have a "short" clock. They like to go to sleep at 7 or 8 PM and get up at 4 in the morning.

Others have a "long" clock - they don't get the signal until later in the evening - could be midnight or 2, 3 or 4 AM before they are tired.

These are completely separate from RLS. A doctor can assess you to see if either of these apply. There are other circadian disorders, too.

But, RLS also has a circadian issue. Dopamine is one of the chemicals that is supposed to tell us it's time to sleep. But, RLS includes a disregulation of dopamine. So, we're supposed to get a release of this chemical in the early evening and we do not. Our body doesn't do it. Somewhere between 2-5 AM, our body all the sudden realizes that we have NO dopamine. It freaks out and it floods our bodies with dopamine. We sleep. But, we now have an excess of dopamine, so our body shuts it off and says, No More of That Stuff! When night comes, it's still in shut-off mode, even though we need it. It thinks we have too much. It's like a valve that got stuck on your gas tank and you think you have a full tank, but you're really on empty.

There is a LOT of information like this in the sticky posts in each of the sections. I highly recommend reading the New to RLS sticky posts, particularly the one on managing RLS.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rlsgirl
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Postby rlsgirl » Wed May 06, 2009 1:25 am

ViewsAskew wrote:Our sleep cycles are regulated by a complex mechanism in our bodies. Hormones and brain chemicals tell us, "It's time to sleep" or "It's time to get up."

This is commonly based on a 24 hour clock. It's called the circadian rhythm. After dusk sometime, based on darkness, hormones and chemicals, our brain gets signals to go to sleep and we get sleep.

But, some people have problems with that 24 hour clock. Some people have a "short" clock. They like to go to sleep at 7 or 8 PM and get up at 4 in the morning.

Others have a "long" clock - they don't get the signal until later in the evening - could be midnight or 2, 3 or 4 AM before they are tired.

These are completely separate from RLS. A doctor can assess you to see if either of these apply. There are other circadian disorders, too.

But, RLS also has a circadian issue. Dopamine is one of the chemicals that is supposed to tell us it's time to sleep. But, RLS includes a disregulation of dopamine. So, we're supposed to get a release of this chemical in the early evening and we do not. Our body doesn't do it. Somewhere between 2-5 AM, our body all the sudden realizes that we have NO dopamine. It freaks out and it floods our bodies with dopamine. We sleep. But, we now have an excess of dopamine, so our body shuts it off and says, No More of That Stuff! When night comes, it's still in shut-off mode, even though we need it. It thinks we have too much. It's like a valve that got stuck on your gas tank and you think you have a full tank, but you're really on empty.

There is a LOT of information like this in the sticky posts in each of the sections. I highly recommend reading the New to RLS sticky posts, particularly the one on managing RLS.


Interesting, I had a hysterectomy when I was 21. I took hormone pills from that age till I was about 28 when the hormone scare came about. I'm now 36 and went back on a different hormone pill when I was 30. I have never had RLS before in my life not even a temp thing. I started with it about 3 years ago just maybe 2 or 3 times a week but not real bad. it continued to get worse and worse as time went on and has now ended up with me having it 24 hours a day with night time sometime after midnight being my worse time with it. Sometime around 5-7 am it will calm down and I will fall out. I can sleep anytime all day long. Even if I have been asleep all night I can still take a nap during the day and have no issues. At one point I switched to a different hormone pill thinking maybe that would help with it. it did not. Some how I have often wondered if my RLS is effected or brought on over time from hormone issues. Have you ever heard of that? i'm going to research what your talking about here a little bit to I'm finding that very interesting. Thanks for the info! :D

ViewsAskew
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Postby ViewsAskew » Wed May 06, 2009 3:53 am

You are welcome. Glad it was interesting.

Hormones are potentially implicated in RLS, but they don't know. They know that women have RLS much more than men. They know it's extremely common with pregnancy - and hormones may be related. And, we don't need any studies to tell us that many of us have worsened RLS pre-period. My medication never covers my symptoms for about 5-7 days before my period and for the 1st day or two.

So, could it be related? You bet. Can we prove it? No. Do we know how? No, again.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rlsgirl
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Postby rlsgirl » Wed May 06, 2009 2:22 pm

ViewsAskew wrote:You are welcome. Glad it was interesting.

Hormones are potentially implicated in RLS, but they don't know. They know that women have RLS much more than men. They know it's extremely common with pregnancy - and hormones may be related. And, we don't need any studies to tell us that many of us have worsened RLS pre-period. My medication never covers my symptoms for about 5-7 days before my period and for the 1st day or two.

So, could it be related? You bet. Can we prove it? No. Do we know how? No, again.


So strange to me that RLS is such a common disorder yet no one knows what really causes it and no one can come up with a medication that really works for it. You would think that these people would be able to figure it out. But then again......one would think that by now a cure for cancer would have been found. I have my reservations on that subject. When I die i want the RLS org to take my body and find the reason and a cure or atleast a good medication to treat it with my remains. :)

I look at my daughter and just pray that she will never have this stuff. It has really been a life changing thing for me. And none of it for the good!

ViewsAskew
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Postby ViewsAskew » Wed May 06, 2009 4:44 pm

Yea! ANother donation (my mom and I are doing it, too).

The medical establishment didn't really believe it until recently - well, maybe it was more that they didn't take it seriously. So, studies are only pretty recent. But, very little funding.

So, if you (and anyone else reading this) can afford to join The RLS Foundation, please do. They are trying to fund the research that we need.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Scarlett46
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Postby Scarlett46 » Wed May 06, 2009 5:15 pm

rlsgirl wrote:I look at my daughter and just pray that she will never have this stuff. It has really been a life changing thing for me. And none of it for the good!


Same here... My daughter is 11, and already worries me a bit. When she was very young, she complained of "itchy legs" at night when it was time for bed. We all chalked it up to the typical kid-not-ready-for-bed syndrome at the time (even changed laundry detergents). But now that she's getting older, she's beginning to complain of aches and tightness in her legs. My husband says it's just growing pains... he had them when he was her age - and he doesn't have RLS.

I sure hope I have not passed this along to her, but I also don't want to discount her complaints! Because I know how miserable it is when nobody believes it's real.
"After all... Tomorrow is another day!"

rlsgirl
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Postby rlsgirl » Wed May 06, 2009 8:52 pm

ViewsAskew wrote:Yea! ANother donation (my mom and I are doing it, too).

The medical establishment didn't really believe it until recently - well, maybe it was more that they didn't take it seriously. So, studies are only pretty recent. But, very little funding.

So, if you (and anyone else reading this) can afford to join The RLS Foundation, please do. They are trying to fund the research that we need.


I have joined and I give addition money as well. I'm hoping that something will be found. I hate to know that so many people have to be on pain killers and other meds that cause so many other issues and still really don't get the relief we need.

rlsgirl
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Postby rlsgirl » Wed May 06, 2009 8:58 pm

Scarlett46 wrote:
rlsgirl wrote:I look at my daughter and just pray that she will never have this stuff. It has really been a life changing thing for me. And none of it for the good!


Same here... My daughter is 11, and already worries me a bit. When she was very young, she complained of "itchy legs" at night when it was time for bed. We all chalked it up to the typical kid-not-ready-for-bed syndrome at the time (even changed laundry detergents). But now that she's getting older, she's beginning to complain of aches and tightness in her legs. My husband says it's just growing pains... he had them when he was her age - and he doesn't have RLS.

I sure hope I have not passed this along to her, but I also don't want to discount her complaints! Because I know how miserable it is when nobody believes it's real.


Does she have it every night? If she does you can take her for a sleep study to see what is going on. I can tell that no one really believes me in my family when I tell them how bad it is. Because they have all had it at one time or another but it was not that bad and it went away. LOL Well guess what........mine is 24 hours a day, it sucks, it hurts, i can't sleep at night unless i'm numb, i can't stay awake during the day because i'm up at night, i'm so tired when i lay down at night and i want to go to sleep quick so i can get as much as i can before my legs start trippen so my love life with my husbands suffers because of it! They have no idea what RLS is and that is what I tell them! No clue what so ever! But thank god for the medacine i'm on now. it has saved my mind! :-)


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