Nightime flailings ...


Posted by Moderator-JB , Apr 09,2001,14:48   Archive
Many of us have problems with RLS (Restless Legs Syndrome). Do any of you experience strange sensations in other parts of your body just as you are trying to fall off to sleep or during the nighttime.

Here's a description: It starts out as a feeling that you are going have to move your hand, arm, foot, etc. Pretty soon that feeling turns into a - I have to move that body part. If you try to hold a hand, etc. down it will start to hurt because it's trying to move (spasm) and you won't let it. It's better to just let it do it's thing. This is dystonia. I've heard others describe the same thing and thought perhaps it is more widespread than is normally discussed.

Klonopin (generic: Clonazepam 0.5 mg. helps me)

Judy




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Re: Nightime flailings ...

Re : Nightime flailings ... --- Moderator-JB
Posted by grace anne , Apr 09,2001,15:24 Top of Thread Archive
I haven't been medically diagnosed that that is what I have, but here's my story. I have no trouble going to sleep at night. But sure as shootin', it isn't long til I have to get up to go to the bathroom, and sometimes I just get up. Trying to get back to sleep is impossible. I'm getting so tired of not getting a full night's sleep that I searched the internet for insomnia. The first thing that came up was RLS. I'm definitely not one who thinks I have everything I see; it's usually 'oh that's not me'. Well, this was a different story. Everything the article said, was definitely me.
It's like 'stop fidgeting', 'settle down',but none of this works. It's like sensations in different parts of my body. Most of the time it's my left leg, but I've gotten the same sensations of "crawly things" in my arms, hands, back, everywhere. And the leg and sometimes the hand/arm does a big jolt. I posted sometime back about feeling like I'm in rigamortis (however that's spelt). So I get up and get on the computer and I do 97% better.
There were so many things in this RLS article that are so similar to BEB that I was amazed. Some of them were:
1 - it's a neurological movement disorder
2 - no known cause
3 - lack of dopamine
4 - affects people between 50-60 years of age
5 - may take decades for a correct diagnosis and after 4-5 doctors
6 - involuntary muscle contractions
7 - frequently misdiagnosed
8 - drugs mentioned are many that are used by people here on the BBB
9 - see a movement disorder specialist.

These 9 above are from various articles. After checking with the pharmacist, (and my doctor a while back), I wouldn't be able to take benadryl. I just can't afford to go through another round of doctor and medical expenses.

graceanne in port orchard who is dying for one full night's sleep




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Re: Nightime flailings ...

Re : Re: Nightime flailings ... --- grace anne
Posted by Delaine Inman , Apr 09,2001,15:57 Top of Thread Archive
Since my fibromyalgia sydrome (1992) I have, I usually had no trouble falling asleep, once I get as comfortable as possible. With every muscle in my body sore this was not a simple task. I have to use lots of pillows. I would wake up about every 2 hours and often could not go back to sleep. I was working and this was not a good thing. When I started on the Elavil if I woke up to go to bathroom or any reason I fell back to sleep and slept until the alarm went off or about 7am if I didn't have to get up. I would have to get up as soon as I woke up, because my body felt so stiff, achey, and sore from being in bed. Now that I'm off Elavil and have BEB, even with the 1/2mg of klonopin I wake up between 2 to 4 and have trouble going back to sleep and getting comfortable. I can't be still. Sometimes after an hour or 2 I will fall back to sleep, but I wake up again around 5:30 to 6:30 and I just get up because I'm so tired of the bed and my body aches all over. You can understand why I hated giving up my Elavil. It also made the soreness and feeling like I had to move better. I've tried some herbs, but I still wake up at least by 3 or 4.
Delaine in TN who knows what every body is talking about when they wake up and can't go back to sleep. I still think FMS and BEB are sisters.

--modified by Delaine Inman at Mon, Apr 09, 2001, 16:03:38




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Re: Nightime flailings ...

Re : Nightime flailings ... --- Moderator-JB
Posted by Virginia , Apr 09,2001,17:15 Top of Thread Archive
Sometimes as I am going to sleep I have the feeling that my leg or foot (actually it's usually where my leg and foot come together) wants to move, but it never does. I've had that as long as I can remember and it has never progressed beyond that. I can usually rub it a little and the feeling goes away.
Virginia in AL, where it has turned almost like summer the last few days



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Re: Nightime flailings ...

Re : Nightime flailings ... --- Moderator-JB
Posted by Carol Arp , Apr 09,2001,20:25 Top of Thread Archive
Starting this last winter I noticed the restless leg thing going on. I go to sleep fine but wake up about 2pm and my thighs and calfs feel all crawly. I started taking .5mg of Klonipin (spell?) and it has taken care of the problem. I only take it at night. So far so good. Hope this helps. PS/I have had BEB, MEIGE for almost 4 years.



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Re: Nightime flailings ...

Re : Re: Nightime flailings ... --- Carol Arp
Posted by colleen , Apr 09,2001,21:23 Top of Thread Archive
I have Parkinson & Beb. People with PD turn over & over all night & have restless legs. Nights were a nightmare .My neuro.said they recommend silk sheets & silk PJ for people with PD.It first i thought he was kidding but i bought some & it was like a miracle.Now i just slide around in the bed so much better.He gave me Mirapex for my legs. I can sleep 4 5 hours now.Just have to be careful& not slide out of bed.I am not tierd now when i get up.

Colleen in IL




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Re: Nightime flailings ...

Re : Re: Nightime flailings ... --- colleen
Posted by grace anne , Apr 09,2001,23:24 Top of Thread Archive
That is interesting about the silk sheets and pj's. I wonder if the sheets would work if it were satin. Thanks for sharing this.

graceanne in port orchard




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Re: Nightime flailings ...

Re : Re: Nightime flailings ... --- grace anne
Posted by colleen , Apr 10,2001,07:50 Top of Thread Archive

Satin works just as well.

Colleen




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Re: Nightime flailings ...

Re : Nightime flailings ... --- Moderator-JB
Posted by Alan Phair , Apr 10,2001,08:38 Top of Thread Archive
Judy, I used to have the restless leg syndrome and boy did I hate it. It went away fro me once I started taking the Klonopin and I have not had it since (knock on wood, cross me fingers etc.) I really had not even though about it for awhile until you just mentioned it...Alan



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