Why do we have insomnia?

I was just thinking after reading a lot of the posts that almost all of us have insomnia.  Has anyone ever asked their doc why so many of us with lupus or related AI diseases have insomnia?  Before I got sick I was a light sleeper and once in a while I need a tylenol PM, but most nights I could sleep alright.  Now there's no way I would get much sleep at all without the meds I take at bed time.

I've had long bouts with insomnia before Lupus -- like 25 years before -- then was okay, but a light sleeper for a long time.

I think for me both the prednisone (I've been told this is a normal pred reaction) and stress can get my mind racing and it just won't wind down enough to let my body relax and sleep. The prednisone makes me vulnerable, and the stress (or a puzzle or situation I want to solve) can wind up my brain and kick me over into major insomnia.

I have a sleep study scheduled for Wednesday, and I'm actually looking forward to maybe getting some real answers about this very subject! I'll keep you posted...

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Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

I was always an early to bed, early to rise person before Lupus. I was a very deep sleeper. Now I have insomnia in the worst kind of way! It is miserable. I know the prednisone can cause it. I seem to have "cycles" where I could sleep 24/7 and then cycles where sleep eludes me. Does anybody else do that?

Hippi,

Hi hippi, boy I wish I knew the answer to that one! I finally got a good night sleep last night. I by passed a pain killer and took 2 ibprophine and I slept well. Of course I hadn't slept in two days before that as everyone could probably tell by my rambling about absolutely nothing.  The only thing the doctor has ever told me is that the effects of not sleeping hit harder and faster because we are already in a constant battle with our health to begin with that we don't have any extra to fight back with.

I think right now the biggest problem I have is the doctor changed my pain meds from vicodin to percocet. I was talking to my brother and he said percocet keeps him awake. They changed my xanax to twice as strong you would think that would help me sleep but it didn't even phase me. I thought about asking for sleeping pills but frankly I just don't want to take anymore pills. I've heard that depression can keep you awake just as much as it can make you sleep all the time.

Lynnwood I hope you get some answers and share them with us.

thanks for starting this thread hippi, it's good to hear what others have to say about this

love ya

carol

 

Great topic Hippi!

Tylenol PM: for those of you who take this . . . it is simply benadryl and tylenol. You can buy generic benadryl for pennies compared to the T PM or name-brand benadryl . . . its called Diphenhydramine and is sometimes labeled Antihistamine.

Lynnwood . . . I'm looking forward to your post when you find out results of your sleep study. My rheumy suggested same for me but I haven't arranged it yet as I am in a period of relatively good sleep (sleeping about 4 hours then waking and sometimes getting another couple hours in). He said good sleep is KEY to healing and sense of well-being. He also said the bad sleep ALL BY ITSELF - w/o lupus - can give you LOTS of the lupus symptoms!! AKKKK - so this is a really important topic.

My current cycle of good sleep is - in part - due to finding the best way to build my nest. For me this involves a couple long corn bags (you can substitute rolled towels, but they won't be warm), pillows and rolled towels. I would love to sleep on my side, but I just have too much hip pain that way. I am forced to sleep on my back (which I always hated). The corn bags go just under each side of my body, just under the sides, from hip to ribs, pillows under thigh and knee. Rolled towels supporting arms where needed, and wrist splints to help prevent hands and arms going numb and tingling or altogether dead-feeling. Alternative for hands is looping thumbs in waist band and supporting upper arms with pillows or rolled towels. *phewwwwww* It takes quite a little process to get the nest together . . .but once you figure out YOUR specific needs and a way to support your own body properly . . . What a difference!!

Sleepy dust for ALL!!!

Blessings!

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In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

i have the same problem too. the deepest sleep i get is from about 4am to 11am and now that i work i wake up at 8am so now i am not getting a lot of sleep, whether i go to bed at 7pm or 12am i still wont sleep well until about 4 and so now i am only averaging 4 to 5 hours of sleep and my body is not too happy with me. i think with me its the meds, i read a lot of the side effects of the meds and almost all of them causes insomnia. tylenol pm works but that is not a good med for me to take long term because of the effects on the liver so i think i will talk to my doc about benadryl, thanks for that Rosie, and its true about the percocet, because that pain med gave me more energy so i would never take it at night. i was taking lunesta but after a while it didnt do anything anymore so i stopped taking it.

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Hugs and prayers,                      If it was easy being a lupie, 

I didn't realize Typnal PM had benidyrl!! Good thing I never tried to take it as benadyl makes me hyper for a couple of days...not on my list of "favorite meds"....ha

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Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Everything everyone said makes a lot of sense. I think we are dealing with so much physical and emotional stuff with this disease it's no wonder we have trouble sleeping. I think pain can also be a big factor since it's hard to sleep when you are hurting. Also I know any anxiety I have gets worse at night. It's hard to explain but I feel like a lot of my life is wasted by resting and not being able to do some of the things I want to do that I sometimes dread going to sleep because I'm sleeping away some very precious time of this short life. Of course the rational part of me knows I need to get sleep so I can have the energy to do things so I feel like my days aren't wasted. Does this make any sense?

Rosie, what you said about creating a cozy and comfortable "nest" is so true. We bought a memory foam topper for our bed and I got a memory foam pillow for Christmas and I have a body pillow and lots of cozy blankets including an electric blanket. I've tried to make the bedroom kind of like a haven and it does make it more pleasant to go to bed. I guess I do feel fortunate that the combination of my neurontin and doxepin usually do the trick for me to sleep soundly - I just resist going to bed at night and feel kind of anxious even though I'm exhausted.

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I'm having "memory foam envy" !!! Good for you Hippi! I've tried the foam mattresses in the stores . . . but my pain doesn't kick in till I'm in bed for a while, so I can't tell what works right away. LOL . . .I'll have to park myself at the local mattress store and take a nap!! But . . . it will be a few years before we can buy a new mattress anyway. *sigh*

There is always the bedtime alphabet. Start with A and think of something you are thankful for that begins with A, then do B and so on. I have had to start over and think of . . . say . . . an animal that begins with A, etc. But I've never gone thru the whole alphabet twice. Sounds silly . . .but it does work if I think of doing it.

Blessings!

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In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Hi Ya'll:

This is a good topic to discuss, thanks for thinking of it Hippi. As for me I normally sleep fairly well at night unless I'm on high doses of prednisone. I know that since getting the MDS I used to be able to get up and do some things but now, I sleep in late and take 2 to 3 naps during the day.

I've got no energy at all to even be up. I know that I normally sleep until 11am or noon, get up and i stay awake until like 3 and end up napping for 1 to 2 hrs. I get us at 5 or so and stay awake for a bit and take another nap around 6:30pm, awaken again at 7:30pm and go to bed at 10:30 or 11:00pm nightly.

I had a sleep study done and it showed I had very mild sleep apena but I can sleep with my cpap machine. I gave my machine a good 3 weeks try and I didn't feel in different so I figured I'd stop using the machine.

I guess I'll just have to deal with feel exhausted all the time. I'm just not making enough red blood cells. Hope you all find a better way to sleep at night.

Take care,
Barb

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dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.