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Sarah2010
07-07-2010, 02:32 PM
Oaahhhh my fellow lupies, I am soooooo tired!!! One of my newest symptoms i've added to my repertoire is insomnia!! I was wondering how many of you out there suffer from it, and what you do to help it. I sometimes fall asleep easily and sleep for 3 hrs or so, but then i'm up for the rest of the night..hours and hours of tossing and turning. Sometimes i lay there and dont fall asleep at all!!! All the while, i'm in extreme pain and discomfort and I shake tike crazy! im not sure if the shaking is from anxiety or from the pain, but I am miserable. By the time it's morning, the rest of the family is waking rested, and i cant get out of bed because i'm so exhauseted. Please help!! Im sooooo tired!!! Thanks
-Sarah

wrightrs
07-07-2010, 02:49 PM
Yes it's so bad. Lots of us here deal with that. There's even a group you can join here. I take sonata. But still can't sleep.

magistramarla
07-07-2010, 03:18 PM
I've found that Baclofen helps with the leg spasms that were waking me up, but then I sometimes go overboard. The Baclofen can make me sleep 12 hours straight!
Hugs,
Marla

Sarah2010
07-07-2010, 03:48 PM
Thanks ladies! Man, as if pain and everything isnt bad enough...Im like a zombie!!! So their is a group I can join with fellow sleepy heads? Tell me where to sign up!! My dr perscribed me tramadol(sp)..im hesitant to take it. First because im not sure how i'll react, like maria said she could sleep for 12 hrs!! I have a 3yr old that I must attend to, so i'd hate to be drugged up if he needed me in the night. Also, i had an x ray yesterday and am going back tom for a cat scan, the Dr. thinks(so do I) that I have pnemonia. My breathing is short and shallow allready, i am afraid that the pain killer or sleep aid will make it worse... Anyways, im not thinking clearly because i'm so tired, so I dont know what to do. Thnks again.
-Sarah
.

Angel Oliver
07-07-2010, 04:24 PM
Oh im sorry to read we have another fellow insomniac....my heart goes out to you my friend.My middle name is Insomnia...not good at all is it.
First of all,have you told your doctor about this? If not do it now! You need meds,either pain meds, anti anxiety meds or sleeping pills.Dont try deal with it on your own,ive tried and it didnt help me at all.I can go a few days without sleep and im desperate at times with it.So we hear you and know how very bad insomnia can get.
Try keep off caffine,have a hot bath before bed time and read a book then lie down after you feel sleepy or should i say IF you feel sleepy.
If you look up there, you will see 'community' click it then go to groups.You will find in there a few insomnia posts we all visit when we dont sleep.There are a few admin works going on now so if it quiet its not that we are not on...sme have had problems getting online,but soon when its all sorted yu'll find us in there.If not leave a message in there...it will help!!
Let us know how you get on...keep posting.
lots of love
Amanda,.xxxxx

Sarah2010
07-08-2010, 10:03 AM
Hello, thanks again for explaining how to join that group. I'm now a member! i have to appologise for not knowing how to use this website better. Lets just say that i'm the kind of girl that assembles things without looking at directions and then has "extra" pieces left over..lol..thanks again.
-Sarah

Nonna
07-08-2010, 10:13 AM
Count me in. I take tizanidine to relax my muscles. most of the time though, I sleep 2-3 hours and wake, then sleep again. the worst is when my mind clicks into gear and I can't shut it down.

nonna

debbie-b
07-08-2010, 11:26 AM
Even when I have a lucky day of no or little pain, I CAN'T SLEEP.
I can fall asleep, but within 10- 30 Minutes, I wake up, because my heart is racing
so fast, that I think I must have been running in a marathon. It takes about two
hours or more, to get my heartrate back to normal. Then I fall asleep again, boom, here
it starts all over again, with my fast heartbeat. Sometimes it beats 160 beats a minute.
The doctor can't figure out why.
But thanks to my best friend AMBIEN, I sleep like a baby.

Debbie

Linda From Australia
07-08-2010, 04:22 PM
Nonna, you said: .... the worst is when my mind clicks into gear and I can't shut it down.

When my mind is racing at night, I write down my important thoughts in a note book I keep next to my bed. That way I don't need to think about what is bothering me or the important things I need to remember any more and I can start to relax. Then I don't need to stress and can go to sleep ....... eventually.

jmail
07-08-2010, 05:59 PM
Insomnia is... all sorts of words spring to mind (thankfully, mine's relatively "clear" today). One thing gauranteed to put me to sleep is one of my old computer programming language books, especially the C++ ones... I like that "notebook" idea, Linda From Australia...

rob
07-09-2010, 04:44 AM
I've tried all sorts of different meds in an effort to get past my chronic insomnia, but nothing works well for me. It's frustrating. I just try to roll with it. If I can't sleep, I'll get up and do something in hopes of eventually getting tired enough to sleep. Even then, I still only get in a couple of hours before I wake up.

Nonna
07-09-2010, 11:50 AM
When my mind won't shut down, I sit up and start knitting, the monotony of counting stitches sometimes helps. I tried the notebook awhile back when I got my Itouch. It didn't work. My creatve writers mind just kept going.

Nonna

rob
07-09-2010, 11:08 PM
When my mind won't shut down, I sit up and start knitting, the monotony of counting stitches sometimes helps. I tried the notebook awhile back when I got my Itouch. It didn't work. My creatve writers mind just kept going.

Nonna

You remind me, of me, only I don't knit!

red246
07-09-2010, 11:30 PM
I have always been a night owl, but now it's sooo much worse! Even when I'm not on any meds I still can't sleep. If I do manage to fall asleep at a decent hour, it's not for long and then I'm up for hours. Kind of runs in the family too, so that doesn't help. I don't like taking anything to help me sleep, but that's a lonnnnnngggg story! So, what do you do when you're on high dose of Prednisone? Right now, I'm on 60 mg and I'm soooo wired!

debbie-b
07-10-2010, 06:57 AM
For all the people who have tried Ambien and say it doesn't work, try to take it on an empty stomach. I used to take it whenever I was ready to go to bed and half the time it wouldn't work, until my doctor said, that I have to take it on an completely empty
stomach.
For me it works, I make sure, that I don't eat ANYTHING before I take Ambien and boy does it work. Within 15 minutes, I am really loopy and my husband shows me the way to the bed.
Btw I have been taking it for almost ten years now.

Debbie

rob
07-10-2010, 12:16 PM
For all the people who have tried Ambien and say it doesn't work, try to take it on an empty stomach. I used to take it whenever I was ready to go to bed and half the time it wouldn't work, until my doctor said, that I have to take it on an completely empty
stomach.
For me it works, I make sure, that I don't eat ANYTHING before I take Ambien and boy does it work. Within 15 minutes, I am really loopy and my husband shows me the way to the bed.
Btw I have been taking it for almost ten years now.

Debbie

You know, I've tried Ambien, but it didn't help. I didn't realize that you should take it on an empty stomach. I always took it with some food or when I was full. I still have a refill, I think I'll get it and try it on an empty stomach.

Rob

debbie-b
07-10-2010, 06:17 PM
Hi Rob,

Try it and let me know if it works.
BTW very cute picture. Don't worry though, I could almost be your mother.lol


Debbie

magistramarla
07-10-2010, 06:39 PM
I seem to sleep in three hour cycles. I sleep soundly the first three hours, then wake up to make a potty run. I spend the next three hours tossing and turning with my legs spasming and hurting. Then I make another potty run, toss and turn a few more minutes, then drift off for another three hours.
I definitely don't feel rested after a night like that.
Hugs,
Marla

Hillbillie
07-10-2010, 06:58 PM
The most trouble I have had falling asleep is when i was taking prednisone. I took it at night thinking I'd sleep through most of the appitite increase. BAD choice. Even ambien didn't work. Now, I take the prednisone as soon as I wake up in the am and an ultram(tramadol) at night. That usually helps me get a pretty good nights sleep. I have grandkids(3 and5) that often stay over and I have no problem hearing them if they wake up at night. If I don't take the ultram I am aching all night and unable to sleep. Maybe you can try the pain medicine when somone else is there to hear your son just in case. Hillbillie

magistramarla
07-10-2010, 07:05 PM
I had the worst reaction ever to Tramadol. My doc wrote NO TRAMADOL in red on my records.
I took the Baclofen (started with half) with fear and trepidation, but it was fine for me.
Jeff found that Tramadol is an opioid, and I am so allergic to them, I can't even eat poppy seeds, which cause me to break out in hives.
Hugs,
Marla

rob
07-10-2010, 08:38 PM
Hi Rob,

Try it and let me know if it works.
BTW very cute picture. Don't worry though, I could almost be your mother.lol


Debbie

Aww come on, you can't be that much older than me! I was 38 when that picture was taken, I'm 42 now.

magistramarla
07-10-2010, 09:49 PM
Rob,
You looked like a kid in this picture. I thought that it might have been from your military days.
Debbie definitely can't be that old! I'm not even old enough to be your mother (52), and I'm one of the grandmothers on here.
Hugs,
Marla

rob
07-11-2010, 04:13 AM
Rob,
You looked like a kid in this picture. I thought that it might have been from your military days.
Debbie definitely can't be that old! I'm not even old enough to be your mother (52), and I'm one of the grandmothers on here.
Hugs,
Marla

Nope, I was 38 in that pic. I still get carded everytime I buy a six pack or order a drink at a restaurant. Since that photo was taken I've grown a beard with a bit of grey (that pic is in my photo album) and I don't wear contacts anymore, so I look a little older these days, and there are a few more lines on my face from the stress of the past few years with the 2nd diagnoisis and all the other autoimmune related problems I've been trying to manage. But I still get people who tell me that I don't look my age. Of course some days I feel more like I'm 80.

Rob

Linda From Australia
07-11-2010, 04:34 AM
So Rob, I am wondering, while most of us with an autoimmune disease looks twice our age, you seem to look half your age. Do you have some unusually rare autoimmune condition where your own immune system destroys the wrinkles as soon as they appear? I wonder if it is contageous, I would like to make a personal visit and catch that one. By the way, I am 47, turning 48 in November. Gosh nearly 50 - now that is very a frightful thought!

debbie-b
07-11-2010, 05:48 AM
Aww come on, you can't be that much older than me! I was 38 when that picture was taken, I'm 42 now.

Welllll, if I would have started realllly early, I am 54. But really, you look awesome in that picture.

Debbie

debbie-b
07-11-2010, 05:55 AM
Rob,
You looked like a kid in this picture. I thought that it might have been from your military days.
Debbie definitely can't be that old! I'm not even old enough to be your mother (52), and I'm one of the grandmothers on here.
Hugs,
Marla

Unfortunatly, I am older than you, I am 54. Lately, everywhere I go, I am one of the oldest people there, like for instance at work.Ugh.
I am going to have to hang out with some older people for a while, so that I can feel young again.
But like Rob said, we all feel like 80, alot of the time.
From one grandma to the next, HAVE A NICE DAY.

Debbie

rob
07-11-2010, 07:15 AM
So Rob, I am wondering, while most of us with an autoimmune disease looks twice our age, you seem to look half your age. Do you have some unusually rare autoimmune condition where your own immune system destroys the wrinkles as soon as they appear? I wonder if it is contageous, I would like to make a personal visit and catch that one. By the way, I am 47, turning 48 in November. Gosh nearly 50 - now that is very a frightful thought!

You don't look 47! I would have guessed maybe 40 tops. The whole youthful look thing has been mostly a blessing, and sometimes a curse. When I first started my career in the firearms industry, it really worked against me. People think a competent and experienced gunsmith has to be a really old slightly overweight guy with a receding hairline.

It made for some really funny situations. I used to have my father help me by being "the face" of my business. I actually had people tell me after the fact that had they dealt with me directly, they would never have turned over their prized firearm to a "kid". I caught hell in the Army too. My Drill Sgt.'s immediately homed in on me because I looked like I was still in junior high. I was dubbed "Private Babyface" (no laughing).

Must be in the genes, because my father does not look his age at all either. We were laughing at some old pictures of him. He became a police officer after he served in the Marine Corps, and was 23 when he graduated from the academy. In the pictures he's trying to look the part of a "tough guy" cop, but he looks more like a 14 year old kid dressing up as a cop for halloween!

Rob

ETA-I almost forgot to metion this- I went and had my Ambien refill filled yesterday, and I am going to try it tonight on an empty stomach as suggested and see if it works.

Nonna
07-11-2010, 06:38 PM
Well, this grandmother is old enough to be Rob's mother. Like rob I got carded until my forties. However this past year my skin started to show my true age. I'm going to have to get my daughter to show me how to upload a pic.
I wonder though if our intake of cafeine has anything to do with the insomia. Any thoughts?
Nonna

magistramarla
07-11-2010, 09:37 PM
Nonna,
I'm another one who is always told that I look young for my age. Our oldest grandson is 11 years old. Anytime that we've had him with us, we've had to convince people that he is indeed our grandson, NOT our son. It doesn't help that he looks so much like his Grandpa, either.
I've tested the caffeine theory. I don't drink soda at all, but I usually drink a cup of hot coffee in the morning and at least two glasses of iced coffee in the afternoon. I tried cutting out the afternoon iced coffee for a while. All it did was make me cranky. It didn't help the insomnia at all. I'm convinced that the thing that wakes me up are muscle spasms.
Hugs,
Marla

magistramarla
07-11-2010, 09:47 PM
Rob,
I love the "private babyface"!!!
My son Tom had the same problem in the Marines. He was a baby, though. He was 17 when he went to training, and was 18 when he deployed to Iraq.
Like you, he had a skill that earned him some respect. He might have been the youngest guy in the unit, but he was usually the ONLY guy who could keep the computer network up and running.
He's now a 28 year old executive in charge of computer programming and training at an up-and-coming business in Houston. He runs into the same problems that you faced with making people take him seriously at first, since he looks so very young.
Complain, complain - I know there are lots of folks who would like to have his "problems".
Hugs,
Marla

Linda From Australia
07-17-2010, 08:09 PM
When my mind is racing at night, I write down my important thoughts in a note book I keep next to my bed. That way I don't need to think about what is bothering me or the important things I need to remember any more and I can start to relax. Then I don't need to stress and can go to sleep ....... eventually.

I take everything back about how a simple fix of just writing things down in a note book next to your bed will help. Well I have come to the stage of suffering true insomnia. I realise that I was never an insomniac in the past. But now, I have nights where I am so exhausted that I just cannot sleep, or I wake up often and cannot go back to sleep for hours. I am wondering if this is a side effect of Plaqenal?

I feel like a toddler who is impossible because they are over tired and cannot settle down at night. I am very careful not to have the same behaviour problems an overly tired toddler has as I know it is a high possibility that my current flare will get worse with stress, and I do not want to get any worse than I already am.

jmail
07-18-2010, 09:13 AM
Sorry about your bad experience, Linda From Australia. My last round was Thursday night into Friday. I had done everything "right" all day Thursday, no caffiene, medz on time, got to bed "on time", etc., and yet I woke up before midnight, and could NOT get back to sleep... I finally dozed-off about 4:45 and then the alarm went off at 5:15 and I got up and went to work. All I can figure is that my day at work Thursday was very stressful, and maybe that contributed to the problem. ?? I doped myself up last night and "slept" from 10pm to 6am. Only problem is that I don't sleep "deep" when doped, and then I can't hardly wake-up the next morning. Plus, I've got that "fog" from the drugs contributing to my now "natural" fog...

Nonna
07-18-2010, 10:30 AM
Then there is the opposite of insomnia - the point where you just want to sleep.........
That's where I am today. I just want to sleep...
This started last night at 7:30 and here it is 1:30 the next afternoon and all I want to do is take a nap

Sarah2010
07-18-2010, 06:24 PM
Im like a new born baby these days...up all night, sleep all day. I just feel better at night. The sun isnt blaring through the windows, its cooler etc.etc.... Plus, now that I've had hives for the last two days, my liquid Benadryl practically has a straw in it, and i'm like a sleeping machine!!! I slept through a thunderstorm and the vacuum today!! But thats the problem..I stayed in bed untill about 4 p.m. So now im wide awake!!! Ahhhh..its a vicious cycle.

teresaa40
07-20-2010, 08:26 AM
Sigh.... I just thought it was because I have so much stress in my life. For the last year or so, I get nights where I lay awake, exhausted, almost crying because I just want to sleep, but, my mind takes off on tangents, and I try to reign it in and focus on the word "sleep" over and over again, to try to stop the mad train of thought, but, before I realize it, I am right back on it, and nothing I do will get me to sleep. I have always been the kind of sleeper, at least as far back as I remember, where I toss and turn for a long time, then, I fall asleep and Im fine, but, if anything wakes me up I have to toss and turn sometimes for an hour or more just to get back to sleep. Some nights lately, I never get back to sleep. The worst is when I get to bed at 9pm knowing I have to be up for work no later than 5:30 am. I doze off, then something wakes me up, doesn't matter if it was nothing more than a noise outside or one of those moments where your whole body does a big twitch. After that, the tossing and turning starts. Every position brings with it some kind of pain, so I try to find the least painful position. After a while that position becomes unbearable so I have to readjust, over and over. I check the clock and it's midnight. then it's 1, then 2......then 4. I am facing the decision of whether to call in sick for work or just deal with only having an hour of sleep at best and work my usual 12 hour shift. Normally, on those nights, I finally doze off about an hour before the alarm goes off.

Makes me want to cry.

gina
07-20-2010, 11:20 AM
I take tradmol for my pain and it doesn't help with the insomnia at all. my body is so use to the meds doesn't affect me at all. helps with the pain an its not addicting. i have been taking benadryl it has helped i take the 12hr dose so i take early enough to get up in the morning. You having a three year old i wouldn't take the 12hr dose be to groggy in morning and their a handfull at that age, i went thru that age already being sick not fun when tired and cranky. I hope this works. this disease effects everyone different and what works for me might not work for you.

Nonna
07-23-2010, 03:44 AM
Teresa find something to do that's relaxing and you can stay on your bed and rest. Sometimes that works, the mind slows down as the body rests.

Nonna

twitching away, but not as stressed