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Razzleberry
09-19-2007, 07:12 AM
I can't sleep with any consistancy. One night (a good night) will be sproadic most of the night sleep with maybe 3 or 4 awakenings. Other nights ...like last night (yawn) I'm awake ALL night (and I mean ALL night ...very darn hour!). I can't believe it. For someone who gets tired so easily how can I be wide awake and not even tired at 3 AM? I don't get it.

I'm blaming prednisone ....but don't have the hyper, wired feeling of prednisone. I've tried sleep aids ...Unisom over the counter and don't know if it really helps or not. Tried hubby's "real" sleeping pills a time or two and they do put me to sleep but I don't want to take that on any kind of regular basis.

What a stupid disease. They say get lots of rest to help control your lupus then the meds or the disease or whatever won't let you sleep! Any suggestions anyone???

kimb
09-19-2007, 09:07 AM
Dear Sleepy- :cry:
You are not alone! I have had horrible sleepless nights. Takes hours to fall asleep, then I wake on the hour, lay there for hours, and finally when I fall to sleep, the alarm goes off!
I am on Prednisone. Luckily, down to 10mg, but have been as high as 100mg daily. In the last, say, 3 months, the sleeplessness has gotten to me. I wake up sore, dragging, and not 100% alive. So....my dr. suggested taking Benedryl(which by the way IS a sleep aid-check ingedients with other otc sleep aids, they are the same)anyway, the benedryl does knock me out, but, I wake up very groggy, and feel that way all day. Sooooo....I finally started taking Ambien. Not a hole caplet though, only 1/3. It is just enough for me to fall asleep and stay asleep for the night. I wake up feeling much better. And you know, if we dont sleep enough, we dont feel worth a darn, especially us lupus people. I didnt want to take prescript. either, but my body could not take any more sleepless nights. I feel so much better! I dont need to take them every night either.
Hope you get some rest, you need it!
Kim

Oluwa
09-19-2007, 09:41 AM
Mrs. M.

I am following you, from forum to forum. No, really... my nights and days are like yours too. The only difference is I am not on prednisone.

When you are up at 3AM do you walk or move about? I find when I lay in bed I feel more alert while wondering about the sleeplessness. But when I get up, come hammer on the PC I realize how tired I really am have another go at... to dreamland. Fifty/Fifty it works.

When the 50% doesn't and the sun is dawning I try to use those spirts. Quiet mouse stuff, not to stir the house. Read, write letters..fold the clothes that has been in the dryer for a week. Dust. Water plants. Eat. Manicure, quickie pedicure. Then by the time my husband wakes up I am ready to go to bed.

Have you tried Melatonin? Natural sleep-aid. It just popped into my head I forgot about that, humm...I must make a trip to CVS and get myself some. Before my GERD decided to take control over my upper GI I use to dose with Excedrin PM. This was pre-diagnose of Lupus, pre-major first flare. You know the days when we thought and everyone else did that we were going crazy...

ZZzzzz--zzzzz,
Oluwa

ermerrif
09-20-2007, 03:07 PM
I had no idea this could be related to Lupus! I recently had a stretch of 4 or 5 nights during which I was so exhausted and tired yet when I went to bed I could not sleep. I would fall asleep at 4 or 5 AM just to wake up by 6 for class (I'm a nursing student - constantly in class or working shifts at the hospital). I ended up taking Benadryl to knock me out because I was totally unable to function at school. It never crossed my mind that it could be related... although I am not officially diagnosed yet, we're waiting another few months to do further blood tests. This is really interesting to know that other people have this problem too!

But anyway, I hope things get better for you... hopefully you can find a good solution so you can start to feel a little better.

hatlady
09-21-2007, 05:37 AM
My goodness! I go through phases of sleeplessness too. And I'm NOT on prednisone.

Nights where I fall in bed exhausted at 8:30 or 9 p.m. About 30 minutes after my head hits the pillow I realize the eyes are still wide open. Big sigh... get up.... go read a while.

Back to bed, maybe get 1/2 hour to an hour's sleep then do it all again. Usually get into a deep sleep around 4 a.m. and get up at 4:45!

Warm milk with a bit of honey helps sometimes. Mild yoga or meditation helps others. Sitting in the recliner staring at the darkness outside, well, that's always an option... Then a LONG hot shower in the a.m. and I'm doing my best to make it through a day.

Fun ain't it? :roll:

Razzleberry
09-21-2007, 05:59 AM
Well, you know the saying "misery loves company"? You're all making me feel better just by knowing you're all up and wide awake at 3 AM too :-) When I'm watching the darn clock tick by hour after hour I feel like I'm the only one in the country who is awake and it gets lonely ...not to mention, FRUSTRATING!

I have tried getting up ...not often, usually I just lie there getting annoyed ...but all getting up seems to do is make me even more perky. I actually finished the latest novel I was reading over one night ...stupid but I was wide awake ...can't stay awake during the day but sure can most nights ~sigh~

I tried the melatonin a couple of times. Hubby swears by it but it didn't seem to make much difference for me. The only thing that truely works is a "real' sleeping pill but that worries me ....habit forming, not "normal" sleep etc etc.

Oluwa ..is your GERD a result of the Lupus or the medications? I've had nasty recurring heartburn lately and wonder if yet another new and exciting symptom has reared it's ugly head. It's never dull with Lupus in your life!

Morpheus
09-21-2007, 07:08 AM
Hi Murdena,
I have those same symptoms recurring every so often, however I found with me it was caused because of an overactive mind, What helped for me was doin some light excercise just to relax me, and no caffeine or heavy foods after 8.

Hope u sleep well.

Oluwa
10-01-2007, 02:16 PM
Mrs. M.

Sorry for the late reply. I get lost with where I had been and where I'm going. And times I feel like my left foot is nailed to the floor. Circling.

But anyway I don't know what actually caused my GERD. I started to get heartburn about 5 years ago. Comes and goes.

At a time I was prescribed Voltren for pain. I think it was for my neck. Gosh I don't recall the exact time frame, but I think after 3 months on it I started to have symptoms like I was having a heart attack. Not knowing I had GERD.

One night I went to the ER, complaining of chest pains. Having a history of early heart disease in my family tree I went through a vigorous testing to see if I indeed was having a heart attack. It was determined I had GERD and not a heart attack..Blessed. My food was getting stuck in my esophagus and slowly, ever so slowly it finally would drop into the stomach. Otherwise stuck for hours. Who knew..

I was prescribed, Protonix a pump inhibitor, stops acid in the stomach. It helps tremendously but the food still slowly goes down but doesn't get stuck anymore. Helps with the flames, burning in the esophagus. Worse than any heartburn feeling that the pain, inflammation radiated into my back and chest.

From my understanding the Upper GI is affected by Lupus and GERD is a symptom.

I was also a bulimic/anorexic for years. I recovered from my eating disorders. This may have affected it or caused it to progress. But then everything goes back to Lupus..it is said eating disorders maybe an autoimmune disease too...

But you know what..I was off Protonix because my doctor said to stop, but now he says..humm, he didn't recall saying such a thing. I went through pain that I shouldn't have had to endure. I thought..I have to except it to treat my Lupus. I am now grateful I am back on Protonix and looking for another doctor.

Lupus and its cronies are a vicious circle. Maddening. Only if we could stop the merry-go-round and get off. Or if we knew where the circle begins maybe we could unravel it and find an end. End the pain, a cure for Lupus...

Hope you have been having a lot of REM sleep,
Oluwa

GlassHalfFull
10-01-2007, 03:48 PM
Sometimes I think I'm on a European clock. Have tried
- Sleep Center Test -- inconclusive
- Memory Foam Pillow and Mattress Topper - took my waking bedtime hours from uncomfortable to much more bearable
- Lyrica -- sort of a ditto above
- Celebrex - starting today so verdict TBD
- Acupuncture -- helps for a while, but have to have at least weekly

It doesn't help me to wake up @ 3 am because even though I wouldn't be waking anyone else up, I don't have the energy to do anything substantial.

Maybe we should all create an online chat room to meet in and while away the wee hours since so many of us are up!

ermerrif
10-01-2007, 06:30 PM
GlassHalfFull - A chatroom is such a great idea!! It would probably ease the stress on a lot of us knowing there are others out there who aren't sleeping! As much as it sucks... lol

Faith
10-01-2007, 11:15 PM
Mrs. Murdena,

For not being able to sleep, Restoril (rx), works wonders. Shouldn't be taken if taking Flexerill or muscle relaxants; use one or the other but never both.

Restoril was very successful and comes in a generic. I loved it; until dx'd with Fibromyalgia and now taking Flexerill. Restoril put me to sleep in no time whatsoever!!

GERD is very familiar on this board. Generic Prilosec (20 mg.) worked for a time. GERD worsened and now on a new med. Life is definately an adventure.

take care,

Faith :)

Razzleberry
10-02-2007, 08:25 PM
Well I was back to see my rheumy and explained my sad story regarding my chronic lack of sleep. I asked for sleeping pills, he said no ...but I had a myriad of other complaints to discuss including what turned out to neuropathy ...for which he prescribed neurontin ...who's side effect is increased sleepiness ...and would you believe it? I'm now sleeping all night! I feel so much better already!!!!!

The bad heartburn is a prednisone side effect he says ...as were a whole host of other little annoyances I'm now dealing with. So we're going to try to taper and see how it goes. Wish me luck.

So Saysusie ..now that you're back (welcome, welcome and we've missed you!) can you tell me all about neuropathy and neurontin. My reading on neurontin says little about it's use for lupus related "stuff". All I could find was info for seizures etc. I'm a tad confused about exactly what is neuropathy as well. I have numb spots on feet and hands and "tight" tendons that feel like knives. Is this from the lupus???

Oluwa ...I had never heard of your condition of food getting stuck in the eosphagus til a friend had the same thing just lately. It's a frightening condition. I wish you well.

Thanks everyone for your input :D

kimb
10-02-2007, 08:49 PM
Is it worth the feeling of endless tiredness? Sore, from perhaps the feeling of sleeping on rocks, and squirrels running circles in you head?
I was so against sleeping aids, but, after endless nights of a restless mind, tired body, lack of restful sleep and waking in the morning feeling stiff and sore, I decided it was time. Taking hours to fall asleep, only to wake in a few hours with my head spinning out of control over silly issues(usually around 3am when there is no one to visit).....I thought it over well. I felt with already having lupus, lack of sleep would only work against me.
I posted earlier, I have been taking Ambien caplets. I break them into 3rds. 1/3 is enough. I dont wake up sore, tired or groggy. I sure seem to have a fresher day, more energy.....
Do consider your health over all, is your body telling you it needs more peaceful nights? A more rested body and mind, may lead to healthier months ahead.
P.S. I also find a NUMBER SEARCH works well to bring on sleepiness.
Good luck, do get some rest, Kimb

Faith
10-02-2007, 11:03 PM
Mrs. Murdena,

I am glad to hear you are sleeping well. It really does make a huge difference. I used to take the smallest dosage of Restoril, 15 mg, and I would be zzzz. I didn't like to take meds; still really don't. Though, I hated waking up in the morning tired and cranky with no energy.

From reading Lupus books, GERD is a result of Lupus. :( I have had Prednisone in a medadosal pack for flares a total of two times due to Lupus symptoms. Prior to Lupus, I never had GERD.

I was so frustrated and tired of not eating for 3 weekends in a row, I finally pulled out Dr. Daniel Wallace's book for reference. It amazes me how Lupus affects all our organs; I didn't think of my esophogus as an organ. I explained the problem to my internist; and he said it's a side effect of Lupus and very common.

Well, I am glad you are sleeping again. That's awesome news. I hope your other symptoms taper off too. Let us know how everything is going.

Take care,

Faith :D

Oluwa
10-03-2007, 02:44 PM
How great is that, Mrs. M. I am glad you are sleeping well. So am I now since the fire is only smoldering in my tube now. It's on its way to being healed again. Being back on Protonix I can now take Naproxen..oh, how cool another pill...long as it does the job.

Yes, isn't it crazy the food getting wedged in there. So much erosion and swelling makes it a tight squeeze.

Are you taking anything for the heartburn though even if the scaryroids is the culprit? Is it prolong burning? Don't let it go untreated...

http://en.wikipedia.org/wiki/Neurontin
http://www.neuropathy.org/site/PageServer?pagename=About_Facts
http://en.wikipedia.org/wiki/Neuropathy

Enjoy your dreams.
Oluwa