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Nonna
02-13-2011, 03:01 AM
My old tried and true methods to get back to sleep aren't working anymore. Any one have any suggestions??? I can't allow this to continue; I want to accomplish things during the day and fulfill my commitments.

Help please,
toni

BonusMom
02-13-2011, 06:24 AM
The only thing that works for me, Toni, is turning on the TV so I can turn off the brain. Yep, the distraction of the TV seems to take my mind off the fact that I'm awake, again, and I have to get to back to sleep. This has only been an issue for me since I've changed my meds for restless legs and I'm not liking it one bit!

Nonna
02-13-2011, 06:34 AM
The only thing that works for me, Toni, is turning on the TV so I can turn off the brain. Yep, the distraction of the TV seems to take my mind off the fact that I'm awake, again, and I have to get to back to sleep. This has only been an issue for me since I've changed my meds for restless legs and I'm not liking it one bit!

what did they give you now? I think I've said before that I take mirapex and tizanidine for my temors and spasms. TV was my old standby; it stopped working years ago, maybe it will work again.

tgal
02-13-2011, 08:38 AM
The only thing that works for me is my amitiptyline. Without it I get no sleep

BonusMom
02-13-2011, 08:49 AM
I started Requip .5 mg two weeks ago. Unfortunately, it gave me horrible headaches and wasn't helpful in the least (woke up at 1:00 am three nights in a row). I called the sleep specialist and she instructed me to cut the dosage in half for a week. Last night was my first night at the full dose and I did pretty well considering I slept on the couch. I'm just hoping I don't develop the HA today.

I had been taking Klonopin, 1 mg daily, but it left me feeling hungover in the morning. I was having a hard time waking up and getting to work on time.

Bonita
02-13-2011, 09:39 AM
I too have lots of trouble sleeping or i go to sleep for short periods of time and awake and it takes hours till i fall back to sleep. On average i get maybe 4 hours a night but i do not want any other meds. Hope you get some relief Bonita

scubagramplit
02-13-2011, 04:34 PM
I was on trazadone and managed around 4 hrs of sleep a night. I gave up on the trazadone and now I get around 4 hrs of sleep a night. With that kind of comparison I didn't think it was really necesarry for me to take more meds. Pretty much mirror image of you Bonita on the nightly sleep pattern. I just try to do what I can when I am awake, some times I have to go back to bed after about 4 hrs and take a nap.

Nonna
02-13-2011, 05:45 PM
So I guess I'm like all of you. I get 4-6 hours a night. My problem is I can't get a nap during the day. So by 3 or 4 I'm done. I still have 2-3 hours to go at work. I just don't know how to do it anymore. Especially after the nights when I fall asleep at 11 or 12 and wake at 2 then am awake til 6 like last night. It makes me want to cry.

Toni

~LUVMYFLOWERS~
02-13-2011, 06:17 PM
I also have trouble sleeping , i seem to wake at 3:00am or my new thing is 2:00am, Way to earley and cant go back to sleep and by 12:00 noon im wiped out with fatigue.
I use to take trazadone id sleep like a baby but be drug out the rest of the day.
For 2 yr's ive been on (neurotin) or gen name gabapentin & xanax for bed time it has worked well and no hangover feeling next day, and the neurotin helps my neuropathy leg nerve pain
and supose to help restless leg syndrome also. Guess im in such a bad flair and new meds right now has messed my sleep pattern up, and it's not a good thing.
Hope your sleep get's better!

magistramarla
02-13-2011, 08:40 PM
I'm another one whose sleep patterns have totally changed since getting sick with this AI stuff. I used to fall asleep as soon as I hit the pillow and knew nothing until the alarm rang. I even nursed the babies in my sleep and never felt sleep-deprived when the kids were young, unless we were up with a sick one.

Now, all that has changed. I'm also bad about waking up between 2 and 3 and then taking well over an hour to get back to sleep. I have to sit up in bed to turn over, since my hips hurt so badly. My legs often wake me with spasming. I have to run to the bathroom. I go to bed freezing, wearing fuzzy socks for the Raynaud's, but then I wake up drenched in sweat.

A while back, Jeff gave me a magnesium pill (to relax muscles) and a melatonin at bedtime. I've found that I sleep better when I take these. However, I've been a bit concerned about taking the Melatonin. I read that it is a hormone that is made by the pineal gland. This got me to thinking. Sjogren's attacks glands, so I wonder if it has attacked my pineal gland, and so my body isn't making enough Melatonin by itself?

I tried an experiment this weekend. Since Jeff was having a C-Pap free weekend, I knew that the noise of that awful contraption wouldn't be disturbing me. On Friday evening, I didn't take my pills. I was reading, and I didn't feel at all sleepy until nearly 1 a.m. (We're usually in bed by 10:30 p.m.) I had a rough time getting to sleep, even that late. I woke up at 3:30, drenched in sweat, which has not been happening when taking the Melatonin. I was awake every two hours after that, but still got up by 8 a.m., my usual time, feeling awful.
Last night, I took the magnesium and Melatonin, and thankfully, had no C-Pap noise again. I fell asleep as soon as my head hit the pillow. I vaguely remembered sitting up to turn over a couple of times, and pulling off the socks when my feet warmed up, but I slept very, very well until my usual time this morning.
I'm really wondering if my theory is right, and Sjogren's has damaged my pineal gland? What do you guys think?
I'm back to taking the Melatonin - at least I get a decent night's sleep.
Hugs,
Marla

jmail
02-13-2011, 09:47 PM
Melatonin and a computer programming language book... Seriously, drops you right to sleep... Only problem for me is I wake-up every 15 minutes or so... lolol

Nonna
02-14-2011, 02:01 AM
Tonite is better. 9-3 pretty solid with 3 wake ups, but right back to sleep. Been awake for a while with my headache; propped myself up and it's going away and I'm yawning - gonna try to sleep again so I have a good day at work

Wish me luck and thanks for the suggestions......

Geeky textbooks haven't opened one since college,35 years ago.
Whoa that's why I'm so out of practice with the one liner comebacks. Need my college roomate to get me back in the swing of it

hugs and thanks
Toni

~LUVMYFLOWERS~
02-14-2011, 04:28 AM
HI Marla, Im with your thinking on the Sjogrens damageing the pineal gland havent researched it yet though, will look into it. I have some of the same symptoms as you at night.
I wear my socks to bed cause of raynuad's and freezing feet and gloves for freezing hand's,
Then wake up sweating, then go to the bathroom and go back to bed then im freezing with hard chills, and my mouth will be so dry i have no salava at all, toung stuck to the roof of my mouth
even though i had taken an evoax before bed to help make more salave for the sjogrens.
So i think im with you on that therory! But im also in a very bad sjogrens & lupus flair right now.
Or could be i just started the imuran back again was on 50mg only 5 days then dr uped it to 100mg and didnt sleep well for 2 nights after that.
Hug's to you!! ~Diane~
I'm another one whose sleep patterns have totally changed since getting sick with this AI stuff. I used to fall asleep as soon as I hit the pillow and knew nothing until the alarm rang. I even nursed the babies in my sleep and never felt sleep-deprived when the kids were young, unless we were up with a sick one.

Now, all that has changed. I'm also bad about waking up between 2 and 3 and then taking well over an hour to get back to sleep. I have to sit up in bed to turn over, since my hips hurt so badly. My legs often wake me with spasming. I have to run to the bathroom. I go to bed freezing, wearing fuzzy socks for the Raynaud's, but then I wake up drenched in sweat.

A while back, Jeff gave me a magnesium pill (to relax muscles) and a melatonin at bedtime. I've found that I sleep better when I take these. However, I've been a bit concerned about taking the Melatonin. I read that it is a hormone that is made by the pineal gland. This got me to thinking. Sjogren's attacks glands, so I wonder if it has attacked my pineal gland, and so my body isn't making enough Melatonin by itself?

I tried an experiment this weekend. Since Jeff was having a C-Pap free weekend, I knew that the noise of that awful contraption wouldn't be disturbing me. On Friday evening, I didn't take my pills. I was reading, and I didn't feel at all sleepy until nearly 1 a.m. (We're usually in bed by 10:30 p.m.) I had a rough time getting to sleep, even that late. I woke up at 3:30, drenched in sweat, which has not been happening when taking the Melatonin. I was awake every two hours after that, but still got up by 8 a.m., my usual time, feeling awful.
Last night, I took the magnesium and Melatonin, and thankfully, had no C-Pap noise again. I fell asleep as soon as my head hit the pillow. I vaguely remembered sitting up to turn over a couple of times, and pulling off the socks when my feet warmed up, but I slept very, very well until my usual time this morning.
I'm really wondering if my theory is right, and Sjogren's has damaged my pineal gland? What do you guys think?
I'm back to taking the Melatonin - at least I get a decent night's sleep.
Hugs,
Marla

BLUESMAN
02-14-2011, 06:15 AM
Having worked as a CSAC (certified substance abuse couselor) and I can tell you that some of what I hear are side effects of MEDICATIONS your taking.( dry mouth comes from XANAX and melatonin)

Some of the other ideas are wrong ....you want your brain to be half asleep before you go to bed,.....make your bedroom DARK Quiet an maybe a warm bath and a nice aromatherapy candle soft music and then lay down put on eye coverage and drift away.

Starring at your computer shoud STOP at least 90 minutes before ya go to bed, gets your brain wiorking on BOTH sides waking you to the highest form possible. SO TUYRN THAT THING OFF 90 MINUTES BEFORE YA GO TO BED AND TRY FOR THE LAST 30 MINUTES to look at things that may make ya smile.
I also hear what may be THYROID DISORDERS and I suggest that some of you have a TSH T-3 and fre T-4 test done....

Such a small organ that some think does nothing actually controls just about your entire ENDOCRINE SYSTEM....and if it is off you may be LOW on HORMONE both ESTROGEN for women and TESTOSTERONE for men.

You may be low on FREE T-3 os SYNTHEROID a hormone that your thyroid makes.....when you;re low on syntheroid it;s like driving your car on fumes.,...you just have zero energy. add in the lack of sleep, side feffects from several meds and some potential personal life changes and you SHOULD BE TIRED !@!!!

Getting injections for men is not so you can have sex but if your test levels are below the numbers suggested for your age it can do more than affect your sex life it can drain ya to the point that you can;t wake up or wanna even get up. A simple blood test can prove this.

Also a B-12 shot monthly will certainly add to your levels of energy,,,,it takes all of these things to be right to feel right and of course a good multi vitamin and eating healthy.

TRUST ME when I was in the MILITARY and ran with a medic we used to run out of MORPHINE and would have to LIE to guys teling them we;re running out and that this is a dbl shot and you shoud get really knocked out but ya gotta relax and make this last for we may not have more till tomrrow,.
After giving them a huge shot of water.....90% of the guys who were given water were PAIN FREE, NODDING OUT, SCRATCHING and literally showed what would have been the results had we given them a dbl shot of morphine!!

YOUR BRAIN IS THE BEST MEDECINE YOU CAN GET....YOU JUST GOTTA LEARN HOW TO TAP INTO IT......a good PSYCHIATRIST NOT A PSYCHOLOGIST can help with that or a feedback specialist.

Negative thiking that possibly you have done damage to your pineal gland only get you on the internet getting BAD advice and basically scarrring yourself into one or more potential diagnosis.
Have ya EVER read anything positive on the net?? NOPE they all start out with the NIGHTMARE STORIES.

Also take a look at the meds your prescribed, look up all the side effect and then IMAGINE what it turn into when ya dump all 15 pills into your stomach every morning.TRY toELIMINATE any meds that ONLY mask your symptoms...if it is not permanently help to fix anything WHY TAKE IT...
STOP for a month and see how ya feel.

EVEN someone coming here would think that you;re constantly bombarded with problems when really most of the symptoms of LUPUS unless your in a real bad way are more of a pain in the arse than anything else.
Sadly there are THOSE OF US who do suffer with extreme side effects since we've had the disease for 15 plus years.

Do yourself a favor...for 4 weeks do NO research online about this disease. For 4 weeks do NOT bring it up in conversations and find other topics to discuss.
For 4 weeks eat right....make sure youre getting fiiber, 8 glasses of water a day and ONLY take the pills that are 100% nessecarry.
Finally for 4 weeks eliminate any meds that DO NOT FIX anything and just mask symptoms of somethng else.
I GUARANTEE YOU WILL FEEL BETTER !!!!!! AND EXERCISE !!!!

Taking Plaquenill and prednisone are like taking COLD MEDECINES when ya have a cold...ONLY WAY MORE DANGEROUS>
After years of PREDNISONE I have kidney damage, cataracts and other probelms that prolonged useage will cause even worse symptoms that what you were trying to STOP.

They have no REAL medication for LUPUS so everything we take is a potential help....NO GUARANTEES.

I have enough problems I do not need to create another problem to make one feel a bit better when it is just a temporary release from the symptoms;
Also those two meds will certainly keep you up !!!

I get more info from my pharmacist than my doctors sometimes.......
I noticed that once they know you have LUPUS ....
ANYTHING that happens that they have NO ANSWER for the ANSWER is always BLAMED on LUPUS.
I have often wondered what would they say had I not told them I had LUPUS?????

YOU are YOUR best BAROMETER....
YOU ALONE know how you really feel.....
I know if I just get out , or play my guitar or play in the garden I feel much better than I do from any of there GUESS MEDICATIONS they have for treating this.

Once you have it deep into your symptoms you;re not only attemtping to treat a disease that has no treatment but your treating the symptoms of many underlying auto immune diseases that have fixes availlable for them.


Trust me I AM NOT SAYING these things are not possible , but what is more possible is that the dry mouth and lack of sleep could be side effects to most medications.
DRY MOUTH is a direct response to any kind of barbituate that helps you relax whether it be melatonin or XANAX..not to mention Xanax is VERY addictive.
Quick and fast addicition grabs ya fast and it is much harder to ween yourself off XANAX SO PLEASE BE carefull the last thing ya want to do is have to DETOX yourslef from some medication your were prescribed for anxiety when they are so many other ways to relieve yourself from that ..like a massage!!!!!.
Just because it is prescribed does not make it un addictive...and most doics donl;t even ask if you;re evere had a problem with addictions or if ya feel comfy taking an addictive medication.

Try some of the old grandmom;s remedies like warm milk,( NO CHOCOLATE OR CAFFEINE AFTER 6 PM) be sure your mind has settled anything that is bothering you.
Though it is impossible but PLEASE STOP LOOKING UP everything about LUPUS you can find on the internet.....
My wife was recently diagnosed with MS and if we went by what we read we would think she;;ll be in a wheel chair in months and her life is over which is so far from the truth.

If you;re NOT getting results from the Rheumotoligst you're using GET ANOTHER.....
NEVER go to one another DR recceomends....as 99% of the time the reason he was recceomended is because he and the DR who recomended him have a deal that the one DR is getting a 10-15% kick back for the referral.

Having dealt with BOTH SLE and DISCOID LUPUS and myriad of other automimmune diseases I have found that exercise is the best way to get re-energized and tired and be able to sleep...

I know who wants to go walking,....
NOT ME..walking with a cane for the past 13 years has rounded off my hip joint and causes severe pain but it is that pain and exercise that makes me tired even though eventually I'll need a hip replacement....for now the benefits of feeling better far outweigh the downside of a hip replacement years from now..and using pain meds because ya donlt use ut and stretch it out on a daily basis.

Remember how ya felt after a hard days work out in the yard....sure you were sore, and beat up but ya slept like a baby....you need to do that.
REV UP that metabolism. help yourself lose weight and solve some problems as well

I too have RAYNAUDS PHENOMENOM and the best way tget rid of COLD HANDS AND FEET is to get the heart pumping blood down to the extremeties.EXERCISE AND MAYBE AN 81 MG aspirin a day plus you may have an auto immune disease that without you doing a thing is causes the small arteries in your heart to constrict thius causing white and n feet due to lack of blood....get moving and those hands n feets will warm up
For that they have presecribed PROCARDIA and now since all the heart surgeries it went to RANEXA but what is good for one is not the fix all for another.

I am sorry if I came on to strong...but honestly everything I said is the GODS HONEST TRUTH.

But remember though we may have the same disorder what it does to each one of us is different so NO ONE medication is the fix all for everyone with LUPUS.

I truely think there is a difference in what should be given to men and women as the amount of men with LUPUS is 1 in 100,000 women that have it.
I do have a sister in law who is a research scientist for Glaxo Smith Cline and I can get info most of us are not privy to so If ya have a question fire away ad I'll do the best I can get a a real and totally un-biased answer

I hope this helps a bit, FEEL BETTER and DO NOT leave it up to the DOC it's your life take your treament into your hands !!!!

James

Bonita
02-14-2011, 07:34 AM
Even when i do not feel good i do not usually have time for a nap. I tend my two youngest grandchildren 3 days a week. i get my 7 year old on the bus and then his 4 year old sister i take home with me and she is a ball of fire and never runs down. Then in the summer i have them both all day i love the time i spend with them but some days my butt is dragging but with Gods help i do it. Bonita That is why i do not also take anything to sleep because of feeling groggy the next morning

rob
02-14-2011, 08:50 AM
I decided that there would be enough time to sleep when I'm dead, so I quit sleeping a couple of years ago...(insert sleepy smiley-face)

SandyR
02-14-2011, 09:26 AM
sleep? what's that?

Nonna
02-14-2011, 11:48 AM
I don't want to add to my meds, that's why I asked for suggestions.
Synthroid
Premarin
HCTZ
mirapex
calcitrol and 1200 MGs of calcium
prevacid
tizanidine (need a higher dose here) muscles are cramping and my poor feet oh my poor feet.
and the dreaded prednizone, which I happen to want to get off. I just wish I knew what to do right now. my brain just starts working and my meditation routines just aren't working.
Love y'all, and thanks for all the advice/suggestions. Probably need to go in to the Endo and get the synthroid raised. I need to get my energy levels high enough to workout again. It's the bloody pred. It ruins me I think. I'm going to ask about going back on NSAIDS. They used to work fantastically.
Nonna AKA Toni AKA MOM

Saysusie
02-14-2011, 02:41 PM
Melatonin and a computer programming language book... Seriously, drops you right to sleep... Only problem for me is I wake-up every 15 minutes or so... lolol
That is so funny...but I am gonna try that tonight LOL

Peace and Blessings
Namaste
Saysusie

Tracyl50
02-14-2011, 03:00 PM
i have tired Melatonin it didn't work for me. I'm so tired and i have to be at work by 5am.. so i try to go to bed by 9 and get up at 415 and i wake up several times a night.. I'm so exhausted.

Nonna
02-14-2011, 05:59 PM
i have tired Melatonin it didn't work for me. I'm so tired and i have to be at work by 5am.. so i try to go to bed by 9 and get up at 415 and i wake up several times a night.. I'm so exhausted.

Tracy try laying still and telling your toes to relax, then your feet,calves thighs butt muscles fingers hands wrists,....... and on up to your scalp. feel the muscles relax then imagine a hot summers day and laying down in a cool creek feel the water flowing over your shoulders, washing away all the stress and wakefulness.

it used to work for me , but not lately my stress levels are way too high.

Try it

Nonna

magistramarla
02-14-2011, 08:53 PM
Tracy try laying still and telling your toes to relax, then your feet,calves thighs butt muscles fingers hands wrists,....... and on up to your scalp. feel the muscles relax then imagine a hot summers day and laying down in a cool creek feel the water flowing over your shoulders, washing away all the stress and wakefulness.

it used to work for me , but not lately my stress levels are way too high.

Try it

Nonna

Nonna,
This is the relaxation technique that we learned in Lamaze classes years ago. My hubby was so good at leading me through it, and I used to love it! Now, ever since I've started having muscle spasms, we can't do this. Any time that we try, it sends me into all-over spasms. It scared Jeff so much that he doesn't want to try it again.
Hugs,
Marla

Nonna
02-14-2011, 08:58 PM
Marla, maybe that's why it stopped working for me. My muscle spasms are worse lately
live and learn.

magistramarla
02-14-2011, 08:59 PM
Jmail,
LOL - I live with a computer science PHD student. He often falls asleep in his recliner with his laptop, a computer programming language textbook and his cat in his lap.
Our son devours those CS textbooks. He's the executive in charge of software programming and training at a business in Houston.
I feel bored and sleepy just watching them read those books!
Hugs,
Marla

magistramarla
02-14-2011, 09:12 PM
A little update on my quest for sleep -
Last night, I had my MTX shot. An hour later, I took my magnesium and melatonin and spent a little quiet time re-reading Jan Eyre (can't wait for the new film version!!) and drinking chamomile tea. I curled up very still in bed, since the MTX makes me nauseous.
I woke up at 2:30, still feeling nauseous, but needing to turn, since my hip was hurting and my leg was spasming. I turned, to hear Jeff snoring and gurgling around his C-pap mask and to see a green glow on his side of the room. He had forgotten to cover that awful machine, and the light drives me crazy!
I turned back to my sore hip and slept fitfully until 5 am. Then I was awake, waiting for his alarm to go off. By 6:15, I went to the restroom and then returned to bed. When he tried to put an arm around me, I pounced! I griped at him to turn that infernal machine off so that I could try to get comfortable and get some sleep! He sheepishly got up and went to school. I got comfortable and slept blissfully until 9:40.
The C-pap seems to help him to feel more clear-headed, but I don't know how I'm going to keep from throwing the thing out of the window!
Hugs,
Marla