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Regular Member

Date Joined Aug 2008
Total Posts : 46
   Posted 5/27/2009 5:17 AM (GMT -6)   
so how many of u r tired all the time from this darn disease, but cant sleep??? Ughh i cant stand it. I am so tired all the time, and then when it comes time to sleep i can not fall asleep. And if i do fall asleep i wake up almost every hour. Its driving me nuts. My dr. has given me ambien and its still not helping. I started on 5 mg and she moved me up to 10mg. Im not sure if maybe something else will work better. im going to ask, lol i have a drs appt today, ughh in like 8 hrs. I just wanna sleep!!! Sorry for he rant but geez. Oh well, ill take what little sleep i can. I hope i get some soon.
thanks guys for listemning
dx sle dec 2007, meds-calcium 1.25g 2xday-prednisone 20mg-plaquenil200m 2xday-pepcid 40mg-asprin 81mg-cellcept 500mg 2xday-tramadol 50mg as needed- ambien 10mg- lopressor 25mg 2xday- paxil-20mg

Regular Member

Date Joined May 2007
Total Posts : 474
   Posted 5/27/2009 9:15 AM (GMT -6)   
Oh I can relate! Is it the Ambien CR. That one gets you to sleep AND keeps you asleep. I tried a bunch of others (including regular Ambien) and they were worthless. But I have had success with Ambien CR. Good Luck!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/27/2009 9:52 AM (GMT -6)   

Oh jojo, I'm so sorry your having that problem. It has been a topic of conversation around here quite often actually. I'm not sure what causes it. For me I usually can sleep pretty well about 20 days a month. The other 10 I watch the sun come up! This week has been rough. I try to adjust my meds so I don't take anything that might be bothering me. But it's strange that it only bothers me a third of the time. I take xana but no sleep meds. With my apnea it's probably not a good idea. I hope you can figure out a way to get some rest. I know it screws up everything if you are sleep deprived.


Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


New Member

Date Joined May 2009
Total Posts : 6
   Posted 5/27/2009 11:22 AM (GMT -6)   
i hear you! sometimesi get too tired though and sleep too much.

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 5/27/2009 3:31 PM (GMT -6)   
Hi JoJo I swing both ways. When I am in a real active flair it makes sleep almost impossible, especially when I have fevers and shakes from chills. I wish I knew what would help. Herbally I have had no results. Perhaps cutting all caffine(slowly mind you). I'm an addict! Some swear by cammomile tea  if you are not allergic to ragweed. My heating pad brought me warmth and comfort since I have no man(LOL. Sorry i could not resist!)I hope your doc has an idea today. Blessings Tammy

I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/28/2009 7:22 AM (GMT -6)   
Hi jojo,

That is often a problem for me too. I sometimes move myself into the guest room where I can get into a really dark room. I read that this makes a big difference in the quality of sleep . . . but I was SURE it wasn't a problem for me (HA ha . . . I went to visit an aunt and slept in a room so dark that you couldn't see your own hand . . . I slept amazingly well there) The tiny lights on all the junk in our bedroom actually are part of the problem . . . VCR, DVD, the new box for folks like me who still use an antenna, the two clocks, etc. In the guest room, I even have the clock unplugged!!

There are lots of online articles about "sleep hygiene" too. I do practice lots of those techniques. You can do a google search and get some good tips. I know it is dreadful when insomnia takes over. I really feel for you. Not trying to simplify your problems, just letting you know what has helped me after years of struggling with insomnia. I've also found that the insomnia is the worst when I am flaring . . . right now I'm feeling well and I'm walking regularly and able to do some yard work and take care of my house. What a blessing!

I hope you get some good answers at the doc's today.


In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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

Forum Moderator

Date Joined May 2005
Total Posts : 6939
   Posted 5/28/2009 12:20 PM (GMT -6)   
My bedroom has black out curtains, I close the door, and there are no electronics to buzz, hum, etc. The alarm clock is battery operated, turned away from me and at the other end of the room.

I turn the AC down to about 64, and the electric blanket to low. So cool air to breathe and warn fuzzy covers to snuggle into.

A small snack 30-40 minutes before bed, along with my evening pills. Routine - brushing teeth & hair, clean sheets and clean all helps.

That was usually but not always enough to handle insomnia previously - when I was feeling worse I developed this strange phobia and was afraid to sleep -- so we added some xanax for anxiety/panic at bedtime and that helped.

It is truly miserable to be exhausted and unable to sleep. The worst for me is when I'm so tired I can't move, but can't nap or sleep at night. I find if I close my eyes and lay still for an hour it helps get me a little rested -- and at that point every little bit helps.

You may be having some issues with meds keeping you awake -- in any case, definitely go over it with your doctors. Mine gave me Trazodone and it really helps shut down some of the 'hyper-brain' that comes from prednisone. The sleep aid you use has to be the right one for your med mix and for you....not something I would play with using over-the-counter meds.

Sweet dreams,
Lynnwood, Co-Moderator: Lupus Forum
Life is far too important to be taken seriously. - Oscar Wilde, 1882

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