Crazy rituals though the years..

For everything and anything else not covered in the other RLS sections.
sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Crazy rituals though the years..

Post by sugbrendas »

I thought it would be interesting to post some of the things i've done over the years. Some worked and some didn't. I was wondering how many of my rituals anyone else has tried.

Sleep hygene. I learned relaxation at bedtime. I wipe out concerns and try to have a plan for daily problems a couple of hours before bedtime so I can erase the concerns.
I've learned to start at my toes and work my way up with a conscious effort to relax my muscles..Crazy that it's my chin that is hardest.
I still do this.

I used to watch QVC with the sound off when I couldn't sleep. It worked for a couple of years then I got a account and started ordering..no more of that.

I always sleep on my side, on my back is more like PLMD. I keep a huge pillow between my legs and my legs/feet can not touch. Still doin this one.

I keep my room very cold. We have central air but in the summer I put a window unit in. Then I use a heated matress pad on my bed to make things perfect. I still can't have it any other way. Husband freezes,LOL
No phones in my room.

Eat something in bed right before I go to sleep..those peanut butter crackers or a protien bar. I'm hypoglycemic at times..I can't eat high fat milky stuff like ice cream b/c of reflux which will keep me awake.
Always do this.

I stop coffee at least 15 hours before bedtime.

Before I know i'll begin a new medicine I try to take one away. They tend to add up. The last one was Deseryl. Deseryl worked on my last flare up but not this time. New one is Mirapex.

My longest effective RLS cocktail was Klonopin, Niquil.

My new thing is to make myself not jump up when I suddenly wake up.
It's like tortue but sometimes I will go back to sleep for a hour or so.
(every hour counts!)

thats all I can think of for now..

Brenda

Now the stockings. They do help, we'll see.

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

Polar Bear
Moderator
Posts: 7917
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

Brenda: you mention something which is very interesting cos it is what I do automatically. When I wake up after an hour or so I automatically get out of bed partly cos I don't want to be tossing and turning and disturbing hubby, and then I'm up for hours. I shall try to remember not to do this, try to stay in bed ....... and see what happens.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

Good luck with that!
Sometimes I put a "off channel" on to bore me and that helps. (on mute)
when I get sleepy/bored I turn it off and roll over.

BUT if I go into the living room my night is shot. Once i'm out there I can't go back to bed til around noon. Thats when I wake up early at 12 to 3am.

I've also realized that the window shades come up as soon as the sun does..Outside for awhile when I can,no matter how sleepy I am.
It's supposed to help the sleep cycle.

Also i've come to realize a evening nap isn't a good thing for me, but the longer i'm up the harder it is to sleep at night so I've committed myself to a nap from about noon to 2p. when I can arrange it when its needed.

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

venus
Posts: 11
Joined: Wed Aug 18, 2010 2:31 pm

let me think

Post by venus »

things i did to try and get the rls to stop during the night.
mine was in my feet only..and never pain..just creepy crawleys that annoyed the sh** out of me and i was a kicker to try and stop it.

constant messages to my own feet, pulling stretching cracking, even bought a cpl hundred dollar foot rub machine..never did work

bought a dish pan from dollar store just for my feet and would fill it with ice and water and freeze my feet then jump in bed and try to go to sleep before the "freeze" wore off. sometimes this worked, but i heard i could have greatly damaged my feet- guess i was lucky.

wrapped feet in ace bandages..... couldnt keep it on..bugged me too bad...

soap under the sheet myth

and lastly.... i stayed up for basically 8 months, then lost it one day..had a huge panic/anxiety attack.... went to docs, took kolonopins for 4 days or so..enough to get some sleep, then went on internet determined to find a cure..... i found this place, where i seen the posts about ferritin and iron. turns out my ferritin was 7..and i immediaielty put myself on iron pills and will go back for more bloodwork every three months.

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

Good luck Venus. Hopefully taking iron will help you. It seems that all of the studies point to iron being the very first thing to look at.

I am having some luck with compression stockings.
I ordered them off of eBay, new in the box. I wear them during the day and take them off at night.

At first I was wearing my husbands stockings. His are labeled as firm. It helped but felt like there was this constant battle going on between the stockings and my legs.
So when I ordered new ones I ordered light compression and wow what a difference.
Last night my feet were touching and it didn't make me cringe.

Still early on though..if you decide to try the stockings I can give you the link. Sizing changes with the brands..This seller gives a sizing chart and the prices were very reasonable.
Finally able to sleep on average 9 hours a night!
Brenda

badnights
Moderator
Posts: 5721
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Post by badnights »

I wouldn;t mind having that link, brenda. I can't keep mine on all night because they're a little too tight and they end up hurting. I might try ordering some if they explained the sizing well enough on the site.

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

http://cgi.ebay.com/Anti-Embolism-Knee- ... _Hosiery_S

I hope this link works but the store is thesupportstore

I got the beige closed toe. My husband likes his open toe cause his toe area is so wide. Also the firm control was too firm for me. I got the light.

Just my experience,maybe just try using them during the day and see if you need them at night. My legs calm down if I wear them all day..Helps alot with the pain too.

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

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Thanks for the link, Brenda. I haven't found that compression stockings help my RLS, but they do feel good and I wear them when flying, or standing a lot.
Susan

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

Post by Betty/WV »

I have been wearing the compression stockings after a whole knee replacement. And I have edema also. They feel good but do not help the RLS. My legs are pretty "chubby". Especially at the knees and sometimes they get to tight there and I have to take them off.

The one non medical thing that helped my RLS. Before the Mirapex was sitting in a bathtub of hot water. You could just feel the legs relaxing. Some times I fell asleep in the tub.

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
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

Yes moist heat! I take a very hot shower every day and take the shower messager to my legs and back areas. It does help for awhile anyway.

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 »

Having had RLS for so many years, 30 or 40, I guess I could write a book. I really didn't know what was wrong with me. I don't know how I functioned all those years. I can remember sleeping on the floor, couch, walking the floor. In the early years it wasn't as bad as it is now. It would come and go. I remember one year my sister and her boys and my husband, daughter and I went to Cedar Point Amusement Park for a weekend. I was up one night cleaning up our rooms, my sister woke up and was amazed that I was up in the middle of the night cleaning up. Another time a dear friend and I flew to Colorado to visit friends who had moved there. We made a trip to the southern part of Colorado and spent one night at a motel. My friend knew about my problem with sleeping, and it so happened we had to sleep in one bed and I was trying to stay still but it was impossible so I went to the bathroom and paced around in there. She came in with some tylenol to see if it would help. After a while I was able to lie down again. Those are just a couple incidents. Also one more, I remember going on a bus tour with some friends to New York, and I had to get up on my knees facing the back to get any relief. At that time when we took bus tours I told my doctor the problem I had traveling and he would give me 3 or 4 valium, depending on how long the trip was.

It was bad then, but so much worse now. As y ou can see, I'm up so early and have been for several hours. What a way to live. I just can't imagine what it must be like to go to bed, sleep 5, 6, 7, 8 hrs and get u p an feel decent and able to do the things you would like to. But then I remind myself of the things I have to be thankful for and that makes it a little easier.

I wish all you RLSers some relief and peaceful sleep. People who sleep well just couldn't possibly imagine what our lives are like.

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

Scarlett46
Posts: 107
Joined: Wed Jun 04, 2008 6:43 pm
Location: Michigan

Post by Scarlett46 »

I remember going on a bus tour with some friends to New York, and I had to get up on my knees facing the back to get any relief.


I do this all the time!

At home - I curl up, sitting on my knees, facing the back of the couch and rock back and forth. Or in bed, I will curl my knees under my chest, with my face in a pillow and rock.

If it gets really bad at work - I will turn my desk chair around backwards, sit on my knees, and lean my chin on the back of the chair or on my desk.

In meetings - I sit on one leg, then I switch to the other, then I stretch both legs under the table, then I quietly tap my feet on the floor... meetings are the hardest, because I don't want to be rude and distract everyone from the subject at hand.

On long drives as a passenger - Knees up with feet on the seat, sitting on one foot and switching, stretching, crossing and re-crossing legs, feet on the dash, :shock: STOP!!! I have to walk!!! :roll:
"After all... Tomorrow is another day!"

badnights
Moderator
Posts: 5721
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Post by badnights »

I bet docs could diagnose RLS in a sleep study just by looking at the sleep positions we use. :?

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

Post by Betty/WV »

A sleep study doesn't diagnose RLS. But if they see you jumping and wiggling around they should know something is wrong. But when you have a sleep study and you are hooked up to all those wires etc., if they don't give you any meds it drives you nuts not being up to get up and move around. That happened to me years ago when I had a sleep study. I don't think they gave me my meds. Worse night I ever spent.

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
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

thats weird that they didn't tell you to take your meds.All of mine they told me to take them.
Finally able to sleep on average 9 hours a night!
Brenda

Post Reply