Insomnia
My wife often has trouble sleeping. It seems like she either can’t stay awake or she can’t go to sleep, and this cycles back and forth every few weeks. Once she goes to sleep, she can stay asleep, but it’s the getting to sleep part that’s often difficult. I suspect that the insomnia is related to certain medications, but it may also be related to the illness itself. Like many lupus sufferers, my wife has tried a variety of sleep aids, including Lunesta and Ambien; however, they tend to work well for a couple of weeks and then lose their effectiveness.
This has had an effect on my own sleep patterns, and I’m feeling exhausted both physically and mentally. I get up at 5:30 AM so that I can get to work, and when you don’t get to sleep until 1:00 or 2:00 AM, this quickly becomes a problem. We need to find a solution or we’re going to have to take turns on the couch, and that just makes both of us sad. We have young children, and that time between 8:00 PM and bedtime is really the only time we have alone together.
The Better Sleep Council has an extensive website dedicated to helping people get the sleep they need. They have listed Ten Tips for Better Sleep:
- Maintain a regular bed and wake time schedule, including weekends.
- Establish a regular, relaxing bedtime routine such as soaking in a hot bath or hot tub and then reading a book or listening to soothing music.
- Create a sleep-conducive environment that is dark, quiet, comfortable and cool.
- Sleep on a comfortable mattress and pillows.
- Use your bedroom only for sleep and sex. It is best to take work materials, computers and televisions out of the sleeping environment.
- Finish eating at least two to three hours before your regular bedtime.
- Exercise regularly. It is best to complete your workout at least a few hours before bedtime.
- Avoid nicotine (e.g., cigarettes, tobacco products). Used close to bedtime, it can lead to poor sleep.
- Avoid caffeine (e.g., coffee, tea, soft drinks, chocolate) close to bedtime. It can keep you awake.
- Avoid alcohol close to bedtime. It can lead to disrupted sleep later in the night.
Unfortunately, we have followed almost all of these suggestions and my wife still can’t get to sleep regularly. Has anyone had similar problems? If so, what has helped?
Jeff,
Your website came up when I was Googling Lunesta + lupus. I’ve got UCTD/incomplete lupus and also have a lot of trouble sleeping. I’m curious to know if others in the same boat use this sleep aid.
Like your wife, I adhere (fairly closely) to the standard “sleep hygiene” recommendations. But general pain plus heightened temperature sensitivity as well as sensitivitiy to even the dimmest light (e.g. the glow of a tiny smoke-detector bulb) can keep me awake. My tossing and turning is disruptive to my husband’s sleep, so I almost always sleep in a different room now.
Here are several “OTC” (non-prescription) strategies that have helped me: sleeping on an air mattress on the floor of a walk-in closet (I leave the door open–it’s still nice & dark); concentrating on breathing to the exclusion of other thoughts; recalling three nice things that happened during the day, and the “why” behind each of them (picked this up from an NPR story–it’s very helpful for counteracting “catastrophic” thinking); and/or melatonin–with my rheumatologist’s okay, of course (worked very well but only for about one week, alas).
All of these have been helpful, but nothing seems to work as consistently for me as Lunesta in combination with a pain med such as Lortab or a couple of Tylenol ES (on top of the usual daily dose of NSAIDs or Plaquenil).
I don’t like having to take a prescription sleep aid. But a full, uninterrupted night’s sleep makes such a huge difference in how I feel the next day. One sleepless night sends me right into a bad pain flare. So I’m also on the lookout for ideas to help with this problem.
Thank you for this very nice lupus-related forum.
Best wishes…
Thanks Wendy. My wife’s rheumatologist has even suggested Benadryl on those evenings where she just can’t sleep, even though Benadryl is one of the medications that she has cautioned my wife against using, but like you said, one sleepless night can cause a flare that just makes things even worse.
When you say temperature sensitivity, do you mean sensitive to heat or to cold? My wife has had similar issues. I wonder if it is related to the illness or is a side-effect of the medications?
Jeff, that reminds me, I once used Tylenol PM (on Doctor’s approval) with some success. It contains the same antihistamine as Benadryl. Do you know why your wife was cautioned against using Benadryl?
My temperature sensitivity is mainly to heat. Sometimes even when I don’t feel too warm I still find that one less blanket, or an open window, will help ease me into sleep.
Hormone fluctuations? Medications? The inflammatory disease process itself? All seem suspect to me.
Another trick that often helps me get to sleep is listening to a pre-recorded podcast of something pleasant and even slightly boring (like a talk show), using ear buds and a little MP3 player. It has a lulling effect and, unlike the TV or a radio, it doesn’t disturb anyone else.
The Benadryl can contribute to depression symptoms , according to my wife’s rheumatologist. Depression is another issue we deal with every day.
That’s strange about the heat sensitivity because my wife has the same problem. It’s like she runs a low-grade fever all of the time.
Hey Jeff…Again I am not sure I have the disease yet. Still waiting on test results. I too suffer from insomnia. I am currently taking a sleep aid (prescribed). It is called Trazadone. Small doses of this drug helps put me to sleep and also helps with depression. I may be told not to use this drug as me an my doctor dive deeper into my symptoms. just thought maybe she could check it out.
Sleep is so crucial to well-being! Just want to add another set of tips & tricks that are working for me.
We recently replaced our old king mattress with two AeroBed twin-size mattresses. We put a king-size piece of egg crate foam on the air mattresses, and our king-size sheets hold everything together nicely. The AeroBed brand (available online or at Target) comes with a built-in pump and a hand-held controller for both inflation and deflation. The motor’s noisy, but otherwise this set-up works like an expensive Sleep Number dual-control mattress–for a fraction of the price. Now we can sleep in the same bed again(!).
I’ve also started taking Clonidine (along with Lunesta and Lortab), and it’s helped enormously with sleep. And THAT helps everything.
Thanks much,
Wendy