sleep thief, LIFE THIEF!!!!

For everything and anything else not covered in the other WED/RLS sections.
nephriticus
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Early Morning Workouts

Postby nephriticus » Tue Sep 21, 2004 8:19 pm

I remain very active and workout 5 times a week. Doing my workouts at 5am is best for me as I am usually up at 0330 am.



Brady,

Maybe you need to reschedule your workouts. :P

As I mentioned in response to another of your posts, I have a spinal cord injury that bestowed me with years of aggravating pain. To help alleviate the deficit, I have performed a 20-30 minute exercise regimen near daily for the last twenty-five years. Much of the regimen has been to strengthen the lower back, but a portion of it I adopted to help control weight and exercise my cardiovascular system. This includes push-ups, of which I generally do 80 to 100.

I learned early on with RLS, which I've had less than three years, that performing 80 push-ups was an aid to transcending RLS to slumberland. Ocassionaly, the sinemet is ineffective and I resort to the push-ups. Very rarely, I might have to perform three sets of 80 push-ups in a thirty minute interval to gain a foothold on sleep. Usually one set is effective. The push-ups really get my heart pounding and my respiration deep and rapid.

Now, a couple of weeks ago I noticed after arising, and sleeping well, that my sinemet pill was lying on the counter. "Whoa," I thought. "I forgot to take the durned thing. So, I've continued to refrain from taking the sinemet since, 'cept for one night where the symptoms were troubling. For whatever reason, I've been fairly free of RLS symptoms recently.

However, last night the symptoms were bothersome in the evening while watching television. Nonetheless, I refrained from the sinemet. But I did perform some pre-emptory calesthenics not including push-ups prior to bed to moderately elevate my respiration. After about fifteen minutes with sleep being elusive from jumpy legs, I got on the floor and did the push-ups. After my respiration returned to normal, I was asleep in minutes.

My preliminary unscientific deduction is that a moderate elevation of pulse-rate and respiration are ineffectual, while an intense elevation of same peforms some beneficial chemistry change which countereffects the RLS symptoms.

I present this lengthy response to your post, because I recognize that it is a small proportion of society that routinely exercises. Since you are one, perhaps you might consider experimenting with intense respiratory elevation prior to bedtime to see if it has a beneficial effect on you as well.

Mind you, immediately following the push-ups the RLS symptoms go absolutely nuts until the respiration returns to normal. Then, usually, all is well. At least for me. YMMV (Your mileage may vary.)

Neph

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lyndarae
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Postby lyndarae » Wed Sep 22, 2004 4:54 am

There are alot of people in AA who believe a drug is a drug is a drug!!! I have gone 17 months without a drink. For 12 months I did not have more than 2 hrs sleep a night. I was starting to think about a drink just so I would pass out!!! Thank god I didnt do that. What I did have to do is scream loud enough to get help with the right meds. I have been yanked off zanax which I was abusing to come down from all the coke I was doing it was rough. Today I dont want to get high,I want to get enough sleep to be able to hold a job, and function to the best of my ability. As soon as I was put on zanax(which has worked wonders for me) ultram and mirapex I went to a AA meeting and told my story. I was surprised by the support I got from people telling me all the different drugs they were on for different illness. I started drinking at a very young age and found that I could sleep with no rls all night long and so the story goes.I take my meds as perscibed and if I feel a need to take more I will have my butt in to the doc. I have read enough to know that as time goes on I might need more and more meds and drug holidays and different drugs ect...ect.. but I think I will worry about that when it happens.Tonight Im just grateful for the support and direction and friendships I have made here.And it amazes me how much I have grown in just a few short months. I was ready to give up, but now I sleep and I awake and I cant wait to see what new things I will learn that day.I really dont think I could have done it without ya all (you know who you are) I say a prayer each day that we will get through this one day at a time!!! Love to all Lyndarae

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lyndarae
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Postby lyndarae » Wed Sep 22, 2004 5:19 am

Hey its Lyndarae again, I had forgotten to mention something that has really helped me at night. I found a heating mattress pad. The heat is only on the leg area. I like sleeping in a cool room at night but the cold really makes my legs hurt(we had snow on the mountains this morning) burrrrrr!!!So about 15 minutes before I get in bed I turn on the heating mattress pad and climb in to a toasty warm bed. I then turn it off and that keeps it from getting too hot. I found it at Kmart. Just though Id pass this on maybe it could help someone else. thanks bye bye

becat
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hugsss to you

Postby becat » Wed Sep 22, 2004 5:22 am

Awwww Lyn,
It's just so wonderful to hear the good news. It's not easy for any of us to get the medications we need, well most of us. I'm not a big woman, when I tell a new doctor I'm in pain, it's usually already over the top. But the look at me and smile......all the time writing a script for something along the lines of tylenol 3.....yeah right. But how could little ole me handle such big drugs.......Well babe, that's one of the reasons we're fighting this thing head on. Don't you worry, your doing a great job. And just so you know, we've all grown. It's a daily education and we're bringing as many as we can with us.
I've been amazed at the short time it takes for newcomers to settle in and be apart of this group. We are some good people. Mainly, because we listen, we honestly care, and we're here to learn. Your one of us hun.....
Our boat is growing larger and you have to be prepare to row sometimes.
Your just doing wonders for yourself and I for one give you credit. But we're here for back up if you need it.
Hugs to you darlin'.

jumpyowl
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Hi, Lyn and Becat!

Postby jumpyowl » Wed Sep 22, 2004 6:50 am

By mentioning the heating pad, Lyndarae, you already did a bit of rowing me thinks! :) Good for you! Now I will do my bit to confirm that the viscoelastic mattress is doing well for me and has decreased both the stiffness and the pain. I know it is costly, I paid $499 shipping included, but perhaps later you can think about something like that. Richs and I have discussed this in the Nonpharmaceutical Therapies forum in more detail. 8)

I am glad that the AA people are so supportive! :D

It is worth all the effort to read posts like yours. :lol:

Talking about efforts. Since I know you Becat and others are chomping at the bit to see some progress, I recruited my daughter to help. She is good at it (taking 12+ medications) but it took her the whole evening to do a few. :roll: Of course, there are truly difficult forms and there are more compliant forms
Anyway, some progress has been shown.

I am waiting for some response on the part of the directorship of the RLS Foundation. I hope that they can rearrange their program a bit, although it is rather cheeky to ask at such a late date.

Hugs to you all!!!
Jumpy Owl

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lyndarae
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Postby lyndarae » Mon Sep 27, 2004 4:47 pm

Hey All, First I want to thank Nadia for being a voice for meTHANKYOU!!!! Ant to say I am soooo jealous, I love love love Sydney!!! We lived there for about a year before we moved to Adelaide. It is the most beautiful city. Leaving Australia after living there for 3 years was one of the hardest things Ive ever had to do. There is nothing like a good aussie mate and some of the best people I know.
I have 3 classes left out of 15, and I start work today. I took CPR friday and only missed 3 questions!!!! I just pray I never have to use it.Since I started taking ultram I do not have hardley any pain. I am suppose to take 50mg tid(thats 3xdaily) I has to take a meds class too so Im showing off a bit!!! But I still cant spell!!! Im breaking the tabs in half and this seems to be enough for me. Im falling a sleep within a half hour but Im waking up quite a bit the last couple of weeks,altho I can fall back to sleep.
This is the strange thing thats going on. I have really been paying attention with the crawlies that go on in my right ear. And I have discovered that when ever I get stressed it starts up. This happened every time I went to a new class once I was settled in it goes away, then as soon as the test came out it would start right up. This happenes every time. MY girls are in Florida my youngest got married Saturday(I was not invited) I was so worried about the hurricane and all that my ear crawled all day long it about drove me crazy. I tried taking extra mirapex with no relief. I just think this is strange but I know without a doubt its rls. MY feet will bubble more when I get tired too. So its no wonder peoples feet are sizzling if they are not getting sleep!!!!!! I am going to talk to the nurse at work about rls we have become pretty good friend already and she wants to know more like I said I know many of the clients are suffering with this and with their mr its really hard for them to say what it feels like I only hope I might be able to be a voice for them. ((((((((hugs))))) Lyndarae

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lyndarae
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Postby lyndarae » Sun Oct 10, 2004 7:23 pm

Hey all, Its Lyndarae, Welcome to all the newbies you have found the right place the people here saved my life. Since I found this site in July I have gone from being completely hopeless to finding the right meds, and a job (that I love) to sleeping better than I ever have. I was asked to give a very wonderful ladie her 17thyear chip yesterday in an AA meeting. What an honor that was for me. Things are going so good I have to pinch myself sometimes. I know in time I will need to change my meds in some way or another, but until that time Im enjoying the relief Im having. Since being on the Ultram my pain has all but disapeared for the first time in my life . It feels like a miracle and I am calling it one. Because of my alcoholism it took along time to get the right meds. But as I have stated many times I know longer wish to get high, I just what to get some sleep and relief. Since finding the right cocktail for me my head is clearer than it has ever been. Im able to do things that use to overwhelm me simple things like learning something new its just amazing. Im going to enjoy it well it lasts. Here is the problem!!!!!!! Yup everything is not rosey!!! Nor do I expect it to be I just want to know if anyone who has been on MIRAPEX or ULTRAM have had some side effects of depression?? Because Im growing so much I dont understand where this depression is comming from, Maybe Im just having a bad 5 days!!! But I got to thinking about the meds Im on and wondered HUMMMMMM!!! Anyone with ayn experience with any of these meds please responded. It might even be the zanax??? All I know is Im depressed, I dont mean to complain Id rather be depressed than hopeless but Im just asking for some feed back. And I know you have all been there so thanks for listening and any info you have would be greatly applied and appreciated (((((hugs to all))))) lyndarae and thanks for all your support

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jan3213
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Mirapex and depression?

Postby jan3213 » Sun Oct 10, 2004 8:39 pm

Hey Lyn, it's Jan

Sorry you're depressed! As you've seen recently, I haven't been too good myself, and I'M ON MIRAPEX, too! I wonder, Lyn..... hmmmmmmm. Anyway, sweetie, you've done so good. I don't know about you, but I'm up and down, sometimes, and I wonder if it's because we don't get good enough sleep. Who knows. Anyway, I'm here for you, ANYTIME!!! You were right there for ME the other day. We'll just take turns!!!! You know, you can ALWAYS call on me!! And, YOU'RE NOT A COMPLAINER!!! My goodness, look how far you've come and look where you've been!! What an inspiration you are! And, I love those jokes, like the one you sent me last night!! I only wish we lived closer to each other!! Just take care of yourself and remember there's somebody in the middle of the US who really CARES ABOUT YOU!!!

Love you

Jan
No one is alone who had friends.

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lyndarae
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Postby lyndarae » Sun Oct 10, 2004 8:59 pm

Hey Jan, Thanks so much for the compliments, ya know Ive been so hard on myself all my life that I do have a really hard time patting myself on the back. I have come along way in a short time huh, I dont give myself enough credit. My girlfriend said your not superwomen ya know!!!! I just really wanted to know if others have side effects of depression from one of those meds. I just havent felt this for so long Im not sure where its comming from. I think I need to just get over myself and watch some football take my mind off myself that allways works love ya girlfriend lyn

lilmom
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Postby lilmom » Mon Oct 11, 2004 9:07 am

hi everyone,i just need to *****!!!!this is my 3rd night this week w/out sleep & now my legs have decided that all night isn't goood enough it has traveled to day.i'm sooo sleepy,i have a constent headache &i'm to quick to anger at my kids.my husband has NO clue what my life is like i just want to kick,sream,&cry. i'm so misserabe right now i don't want to keep living like this what kind of life do we live ,&how much good can we do anyone w/out sleep & in sooo much PAIN??god my legs just won't stop.sorry for the ***** seson but no one else gets it! i'm going to try another hot bath w/ salt goodnight :( :cry:

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jan3213
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Postby jan3213 » Mon Oct 11, 2004 11:44 am

Hi lilmom, it's Jan

You're having an awful time, aren't you? I'm so sorry!! You just go ahead and get it out!! That's what we're here for! You want to see someone vent? Got to the General Caegory category and look for the thread called Sick and Tired.......that's me!!! Talk about comlaining!!!! Everyone has a day now and then, and THAT was MY day; THIS is YOUR day!! We're a family here, and families listen (or SHOULD, anyway) and care! We are know what you're going through, so you've come to the right place, and if you can't pitch a b---h here, where can you? RLS is NO PICNIC!!! People who don't have it have ABSOLUTELY NO IDEA what it's like to go with no sleep night after night and have your legs scream at you. So, anytime you want to, lilmom, you feel free to vent away. Someone will listen and perhaps share something that might have worked for them, whether it is a type of medicine, or something non-pmarmaceutical (you might like to read that category--there are some very interesting things people have tried. We have some great researchers, if you have a question and we have a few people who are extremely knowledgable regarding medicines. As I said, we're glad you found us. Hang in there!! We're here for you. And, one of these days, you'll be writing a post like this one to a "newbie".

Jan
No one is alone who had friends.

becat
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It's never the right time.

Postby becat » Mon Oct 11, 2004 5:12 pm

Hello to all,
Lyn, Jan, and welcome Lilmom............
Lyn first of all congrats on the 17th chip. Your pride is well served my dear.
As for the depression and medication. It's my theory that most of what we take are "downers" of one sort or another. It's had to balance the need for our bodies to slow down and be still, with our emotions and heart's need to be positive. It's a battle to even out feeling better and just being numb. I think most of us here prefer not to be numb, but alive enough to live through the RLS. I think also that this could go back to the "hopelessness" we feel about our future. Will the medications work? How long this time? Will there be something out there for me if these don't work? It's a wicked web or trial and error. It could very well be the effects of the medication and the RLS together. HAVE HOPE.
WE're not giving up on the forward march we dream of.
Lilmom, it's a progressive disorder. One of the progressions is constant lack of sleep. It tears a soul into bits after a while. I finally (just two weeks ago) had a chat with my hubby about my last 10 years. He had no idea. Really a wonderful, kind, thoughtful man...........but just thought I was getting Bitchy and more and more sleepy every day. He had no clue that I was in daily, severe pain that only increased as the day went along. He's seen me when an attack leaves me walking like a 90 yrs old grandmother, but never knew what I felt like. He had no clue that I was scared to drive some days. He thought I just won't leave the house. My children and husband have suffered as much as I have. God Bless them.
Mine is not a normal home, everyone knows it.........but they could understand unless I take the time to explain it. It's not easy to do, is it?
We'll figure this out because we have to. It's important that someone gets the message that this is not a lifestyle we prefer to pass on.
Hugs to all,

lilmom
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Postby lilmom » Mon Oct 11, 2004 11:34 pm

thank you all for just being there!and (((a big hug to you jan)))reading stuff from you makes it a bit better. i'm waiting for my husbands med. ins. to kick in so i can see a dr.till then i could use all the sugg. any one has to deal w/ the pain w/out a perscripton!!!!!!again THANKS!!!!!! :?

guest

Life statement

Postby guest » Thu Oct 21, 2004 9:19 pm

I am 51 years of age.I have had RLS since I was a child. Both my parents suffered with RLS and alcoholism. Because of both of these conditions going on in my home life started out in a scary place. The fights the lack of sleep the pain, the medication my mother was put on because she was not diagnosed properly,lead me to trying alcohol too. Hey guess what I can sleep with a little booze in me. I dont here the fights now I dont feel the pain in my legs!! I CAN SLEEP!!!!

And sleep becomes my friend but I only have to drink a little more. And then a little more!!!!! And in a few years the alcohol isnt working any more. My mom has left us and we have a new one. But this one doesnt keep us in the basement all day so she can sleep. She stays awake all day how strange is that??? She lets me miss alot of school cause my periods make my legs hurt so much. She gets me a heating pad ,she calls it growing pains too. It must be growing pains.

I become a teenager, my dads always at the bar I can do what I want no one is in charge here. I discover downers,yellows reds WOW these really allow me to sleep. I can sleep forever. The growing pains are gone now. I finally stopped growing,and stopped learning and feeling and knowing right from wrong. I cant sleep at all now without the downers the pain is so bad I have to kick my legs all the time. I need to get more downs. There are plenty of people who have them and like to get me high cause I will put out. A few pills and a little booze and Im layed and left to sleep. Until I find my way home and the pain returns.

I become a loser at 16, the teachers are done with me my step mom thinks Im stupied because all I want to do is sleep. What the hell is wrong with you??? is all my dad says. So I guess I need to try some of that speed everyone is talking about that will keep me awake and then I wont be stupied anymore. Yes this feels good who needs to sleep anyway...

My life passes by. Im takeing the speed to be smart and the downs and alcohol to get a little sleep. Its boring at night when everyone is sleeping. I weigh about 98lbs. I marry my first love the one who turned me on to grass, now that really works the best for sleep. I love being mellow and laid back. RLS is gone completely now. Im a pothead its the 70s and life is cool.

Im pregant Im still getting high but trying to cut back(cause of the baby) I cant sleep Im so uncomfortable, my legs are now feeling creepy like bugs are crawling on them must have something to do with being pregnant. I know its ok to have wine when your pregnant my doc says a glass at bedtime will help you sleep. I try not to notice that Im drinking a bottle. And only sleeping about 5 hours a night. I have a healthy baby girl. Im 24 years of age. My husband works for the railroad he is gone a coulpe days at a time then comes home and wants to sleep. I have a newborn. Why should he get to sleep when I cant!!! Well I cant drink anymore cause I get clumsey and I have a baby so the grass works good and helps me sleep when she is.

Im tired my life is over I cant stand the man I am married to I want out. Down the street I go my daughter is 3 months old its winter and I have a dime in my pocket. Back to the basement I go only this time I have a daughter to think about. Its great haveing the stepmom there she loves the baby and tells me go ahead ond go out you need a break. I will take care of her. I meet a new frien who has some cocaine. My life is messed up and its not just mine anymore. I cant eat, I dont feel and I cant sleep, I just need a few good hours of sleep. I go to see a substance abuse councler.

Now I find out there are all sorts of things wrong with me. Pms,panic dissorder, depression, Im one sick girl. Lets put you on some antidepresion medication and the fun begins. Im not stupied, Im depresed. Ive had a bad childhood, my mom abanded me, my dad beats me nobody likes me and on and on and on!!!!!!!!We live on welfare and I party on the weekends doing any and all drugs I can find my daughter spends the weekends with her dads mom, I dont want her to see me like this,I need to sleep. I just need a few goods hours of sleep.

Two years pass I meet a wonderful amn who is not a drug user, not an alcoholic and is the love of my life. He treats me like gold he lets me sleep he feeds me,he is kind to me. He runs me hot tubs of water in the middle of the night. He rubs my legs for hours. I eat and sleep almost 4 hours a night. I stop doing drugs we move to Maine and lif seems pretty good.

I cant sleep anymore I have two daughters now.I CANT SLEEP!!!!!! iI see doctor after doctor they all say the sane thing Im depressed, I start to believe them. I end up in the mental hospital with what they call a nervous breakdown. I dont know what Im nervous about I have a wonderful husband who does everything for me two beautiful daughters, IM NOT NERVOUS I CANT SLEEP........ They have me so doped up on this antidepresant and that one, Im over dosing the whole nine yards. They send me home and tell me I need to see a shrink!!!!!

My marriage after 15 years is falling apart RLS has finally been diagonesed in 87 after my dad dies, they put me on Klonapin I become addictied, my husband does not understand why he has to sleep on the couch(neither do I) I just know I cant stand to have my skin touched in bed at night and I need the whole bed to strech out and he falls asleep the minute his head hits the pillow this really pisses me off how dare he sleep when I cant.

He starts a bussines in Chicago which is fine with me I dont have to feel so guilty all the time if he is not at home. We move to Florida he is never home I start hanging with some people who are in to cocaine big time and off I go. Im doing cocaine all day and zanax at night. Along with prozac for my depression.....

My life is really over now... MY daughters hate me I run my husband off and I stay high so I dont have to feel the pain and shame. Ive lost the one and only person who has ever loved me uncondictional and I cry to this day over him. He has moved on and married a good women who is good to him.

Five years pass I move back to my home town. I get clean and sober for 1 year. I cant sleep I nightwalk for months. MY sister takes me to the ER witha panic attack, when I got sober I threw out my zanax at that point I had weaned myself down from 6mgs to 2 mgs at night. For 15 months I nightwalk on the edge of panic, I dont work I stay in the house I go to AA meetings, I cant sleep. I get a computer and learn how to use it, my life is saved by the RESTLESSLEG FOUNDATION AND CREW. And not a minute too soon either not only am I suicidal but I am hopeless. I learn for the first time that I am not crazy and I am not alone. I read there is medication that will help I get in the forum and I read read read.......

Four months later Im on MIRAPEX,ULTRAM AND ZANAX.... I have 17 months of sobrirty. I have a new job my daughters are talking to me and for the very first time in my life I have HOPE!!!!!!!!

I am writting this with the HOPE THAT SOMEONE WILL HEAR ME!!!!!! I am the voice of millions of families that have and are suffering with RLS. And if I can help just one family then all the pain and suffering I have gone threw would be worth something to me. I can never get back my life but I can move forward and know in my heart that I was never stupied I suffer from a syndeom that stole my life foe 51 years.... and I will be dammed if I will let it take another minute of it......... Lyndarae Floyd

Guest

Postby Guest » Thu Oct 21, 2004 9:43 pm

this is Lyndarae again the statement anove is what Ive sent to Becat to take to California and hopefully some hottie tottie doc will read it and get something out of it. For any of you who read it (sorry its so long) I could write a book about some of my adventures,you wouldnt belive some of the things Ive seen and done.. Anyhow I just wanted to Thank all of you who saved me that awful day of such dispaire, you know who you are!!! When I said you saved my life Im not jokeing...You all saved a life that day and I hope you know it. I want you to know it. You saved the life of a person you have never met, and you help people everyday with your love and support and compassion. To you I will be forever grateful and alive. And to you Jan, there is no doubt in my mind God had a plan for you that day, to talk a women out of takeing her life to let her know there is hope and people like you in the world!!!! GOD BLESS YOU ALL Lyndarae


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