Crazy rituals though the years..

For everything and anything else not covered in the other RLS sections.
Betty/WV
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Post by Betty/WV »

Brenda: I know, I think they goofed, to my disadvantage. This time I'm asking lots of questions and make sure they and I understand everything.

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

sugbrendas
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Post by sugbrendas »

The way I understand it is if your legs move and your in REM you may have RLS.
Finally able to sleep on average 9 hours a night!
Brenda

ViewsAskew
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Post by ViewsAskew »

sugbrendas wrote:The way I understand it is if your legs move and your in REM you may have RLS.


I haven't heard that and am interested in hearing more. Do you remember where you read that? I've not been doing much reading the last year or so.

I've always heard that any movement during sleep is most likely PLMs. But, I know I sometimes awaken with RLS and I was moving in my sleep. I've always wondered how they define that.
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.

sugbrendas
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Post by sugbrendas »

I understand that in the beginning of RLS that you probably don't have noticable leg movents. I think some people are different but in the majority people just complain that they can't sleep.

Alot of the times we are diagnosed with depression because if you can't sleep you MUST be depressed.
Yeah,that happened to me for several years..before RLS was really known.

When I was finally diagnosed in 93 or 94 I knew little about it. The Neurologist said it was a progressive disorder but not debilitating(I sorta disagree about that) cause it's definetely debilitating when you don't get nearly enough sleep.
Each flare up I had it wasn't obvious it was RLS cause it was happening in my sleep.
Now it's all day,even in my arms. It has shown progression. I have pain now,never did before.
They keep telling me it's how it is. It's kinda scary cause i'm only 55 and it getting worse is unthinkable to me.

When they look at the sleep studies they really want to know what happens in REM. That means there's not a conscious effort to move,it's like unconscious. Not that you can't experience it while awake but if they don't find any movements at all during REM it's hard to diagnose.

I thought at one time I had PLMD and it was not the case. I was kicking and hitting my husband,much more activity with PLMD. RLS sometimes can not even be seen, it's a more subtle movement.
With PLMD they can just about diagnose you by watching you sleep.
With RLS it's not always so obvious.

Everything I uderstand has been through specialists and information meeting at Hopkins. I believe this to be correct. At least it's how I understand it to be.

my PLMD was in fact very low oxygen level in REM. With oxygen while I sleep the punching/slapping and kicking has gone away..Thats why I think it's so important to have studies, I could have died from low oxygen.

HTH

Brenda
Finally able to sleep on average 9 hours a night!
Brenda

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Hello all RLSers.: I think I mentioned I was going to a new sleep specialist today. I felt very comfortable with him, he knew all about this web site and the Mayo Clinic Algorithm, ( I took him a copy). He has set me up for a sleep study on the 14th. He always feels like Dr. B. does about giving opiods for RLS. The neuro I went to before acted like I was asking for something unthinkable when I discussed vicodin with him. Like this new doctor said, doctors feel like people are out looking for drugs. but he also acknowledged that I was a true Restless Legs Syndrome patient. He noticed that I have been taking klonopin for along time and still taking 1/2 of a mg. all that time. And he said you evidently aren't addicted to it. He said (which we all know) that when you are addicted you have to keep increasing the dosage, when I had vicodin, I would take one at night when I was desperate, when the Mirapex wasn't up to par. Why that happens I don't know. Anyone have any ideas?

So for all you who are still looking for help, don't give up. I think this doctor and I will be able to work together. You just hve to keep looking, like this doctor said, "we know this disease isn't curable, but we have to try to make people that have it more comfortable." Thats all I want is not to have these horrible nights that I walk the floor crying, so tired but can't even sit down or lie down to rest. I'm to old for that. And spent to many years doing that.

Wish you all a restful peaceful night.

BETTY/WV

"The older I get the better I was."
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

SquirmingSusan
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Post by SquirmingSusan »

Hurray! It sounds like you've finally found a doctor who is willing to do what it takes to help you feel better.
Susan

Betty/WV
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Post by Betty/WV »

I think so Susan, he was very knowledgeable about RLS. Knew about the RLS Foundation and talked about RLS more understanding than any of the many doctors I have seen. I hate the feeling that doctors think you are just searching for drugs. I have never abused any drug. And he saw that when he saw that I was taking klonopin and had been taking the same small dose for years.

This is why I would like to tell everyone not to give up keep plugging away, keep educating yourself about RLS. I felt so good when I left his office, but maybe I'm getting the cart before the horse. After all it was my first visit. But I could tell when I went to the other doctors , on the first visit, how much they knew about RLS.

I want to thank all of you for being there on this terrible journey with me, and I want to be there for all you. Its still going to be a long journey, one that never ends, we just have some good phases of it and some bad ones.

Peaceful sleep all. 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

ViewsAskew
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Post by ViewsAskew »

I just love these posts.....I just wish it didn't take so long for some of us to be able to make them.

Congratulation, Betty.
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.

sugbrendas
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Location: Balto.
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Post by sugbrendas »

I'm sooo happy for you Betty! All of us understand how thrilled and hopeful you are and some of us may sigh and say I wish someone could understand what i'm going through.

Finding the right Dr that understands RLS is so important.. Usually a Neurologist specializing in sleep disorders.. I was lucky to have found one in 93 or 94.

I have had access to Dr Early but not always, the insurance company only allows a crucial episode. My next step is to see the new Kiaser neurologist thats coming on board.

I am sleeping better. Better than I have in a couple of years. I am so thankful.

Keep us posted!

Brenda
Finally able to sleep on average 9 hours a night!
Brenda

ViewsAskew
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Post by ViewsAskew »

Yea to you, too, Brenda. So glad you're sleeping better. It does seem to go in waves, doesn't it? Bad, better, very good, not so good, bad, etc. I'm in a not so good place now, but that's better than bad! I hope I can skip bad this time and go straight to better, lol.
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.

badnights
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Post by badnights »

I would like to give you all the gift of sleep; if only I could. I cried reading these last few posts. With happiness for Betty (in anticipation of reading of post from you saying you slept for more than 5 hours!), with hope for Brenda, with dismay and hope together for Ann; I just want all of us to have some sleep.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Thanks bethf and all of you for your concern and support. No body else understands what living like this is like, except you all who are going through it yourselves. I get no sympathy, just looks of confusion and some times disgust.. Not that I want sympathy, just understanding. Funny isn't it I get what I need from faces I never saw, voices I never heard. :shock: :cry: People in my life probably think I am some kind of weirdo. I have no energy, usually isolate myself because of no energy. Oh well, like one of you just said we have bad days, worse days, not so bad day, alittle better. We are so different than people with any other illness.

"Rats die in 16 days without food, 17 days without 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

ViewsAskew
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Post by ViewsAskew »

I HATE when I come here and cry!

I LOVE when I come here and smile, laugh, or feel happy for someone. I wonder if that's sometimes why some of us don't share as much of the bad....
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.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

I know what you mean Ann. I try to be positive but sometimes the saddness slips out. All in All I think we are a pretty upbeat, funny, happy group. I think I am too. For what we deal with night after night we seem to have a fairly good sense of humor, I love to laugh---great big belly laughs. Sorry if I was a little morose.

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

ViewsAskew
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Post by ViewsAskew »

Oh, no, I didn't mean it that way at all. More that we should probably share more of the bad - that we don't share it because we're afraid it will bum people out. I think we should share it. Obviously, there is a balance, of course, but not sharing the bad doesn't really help anyone.
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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