15 Questions - Strategies for Restful Sleep

1. I have SLE and lupus nephritis and I have found that it is difficult to sleep. How does lupus affect the ability to sleep and to have productive sleep?  Are sleep problems typical for lupus patients?  Holt, MI

The first point to make is that the scientific data on sleep in SLE is sparse. More needs to be done. Having said this, there are several surveys and a handful of small objective studies of sleep in lupus. The survey studies find that about 50 to 60% of individuals with lupus report poor sleep.  This rate is consistent with general studies of other chronically painful conditions.  Poor sleep in SLE has been associated with fatigue, objective measure of disease activity, depressed mood, and joint pain. The few polysomnographic studies (objective sleep study) suggest the possibility that rates of sleep apnea and periodic limb movement disorder might be elevated in lupus (see a description of these disorders below). These studies are too small and / or of poor quality to be definitive, but they are suggestive enough that I would recommend that all Lupus patients should directly talk to their doctors about their sleeping problems. We are increasing learning that sleep plays an important role in regulating immune function.  Sleep deprivation (simply not getting enough sleep) and various sleep disorders such as insomnia and sleep apnea; have consistently been shown to increase inflammation.  Therefore, sleep problems are likely to exacerbate lupus disease activity and associated symptoms such as fatigue, pain, depressed mood, and cognitive dysfunction (e.g., attention and concentration, mental processing speed, memory, etc.)

Three common sleep disorders: 

Sleep apnea
Sleep apnea is a disorder in which your breathing is disturbed during sleep.  Common symptoms associated with sleep disordered breathing are excessive daytime sleepiness (fighting to stay awake) and loud, persistent snoring.  Additional symptoms include frequent waking up gasping for breath or noticed pauses in breathing by you or a bed partner. Some important risk factors associated with sleep apnea are, obesity, older age, and neck size (>17 in men and > 16 in women).  Keep in mind that it is also possible to have sleep apnea without these risk factors.  Sleep apnea is associated with increased risk for cardiovascular problems (heart disease and stroke) and therefore it is important that you evaluate and treat this condition.  There are a number of effective treatments that your sleep specialist can discuss with you.  The American Academy of Sleep Medicine can help you locate a sleep center near you to evaluate and treat sleep apnea.

Insomnia is the most common sleep disorder.  It is a problem initiating or maintaining sleep or the experience of non-restorative sleep that impacts daytime functioning in some way.  Insomnia is typically associated with fatigue (not necessarily sleepiness). Insomnia is also associated with irritability, negative mood and pain.  Typically insomnia symptoms that occur 3 nights per week for at least a month is consider clinically significant and should be  evaluated by your doctor or sleep specialist.  Chronic insomnia has been shown to be a risk factor for many chronic diseases. Fortunately, there are good treatments for insomnia. The Society of Behavioral Sleep Medicine’s website is a good source of information about insomnia, how best to treat it and how to find a certified specialist.

Please note that many sleep disorders centers focus primarily on treating sleep apnea.  You should ask if they have a Behavioral Sleep Medicine Specialist on staff to evaluate and treat chronic insomnia.

Periodic limb movement disorder
Periodic limb movement disorder is a disorder in which the muscles, typically in your lower legs, repetitively twitch while you are asleep.  This muscle activity is often associated with extremely brief brain arousals.  The individual is often completely unaware this is occurring, but they are associated with poor sleep quality and can lead to daytime symptoms.  Older age is common risk factor for periodic limb movement disorder.  Diagnosis requires a sleep study and there are multiple medical treatments for periodic limb movement disorder. The American Academy of Sleep Medicine can help you locate a sleep center near you to evaluate and treat sleep apnea.

2. Most nights I get only 3-4 hours of sleep.  Then I'm up for 3-4 hours and can then manage a little more sleep.  How can I make myself stay in bed AND sleep?  Tucson, AZ

Forcing yourself to lay in bed awake for long stretches at night may actually contribute to and perpetuate your sleeping problem.  This establishes your bed and bedroom environment as a place where many things happen in addition to sleeping.  Over time, your body can develop the habit of being awake in bed instead of asleep.  Your bed and bedroom can become cues that trigger your body and brain to automatically be alert, start problem solving, worrying, etc.  An example of this phenomenon is described by people who report being very sleepy and fatigued at bedtime while watching TV in another room. When they lay down in bed, their mind suddenly becomes overactive. They may even start to feel physically anxious.  To re-associate your room with sleep, cut out all activities in your bedroom except sleeping.  Also follow the “15 minute rule.”  If you are awake in bed for more than 15 minutes, get up and relax in a different room with the lights down until you are nodding off. Only then, go back to bed and repeat these instructions as needed.  Get up at the same time every day—no matter what, 7 days per week.  It may take a couple of weeks to re-establish your bedroom as a strong cue for sleep. 

If this problem has been going on most days of the week for at least a month, I strongly recommend you obtain an evaluation from a sleep specialist to determine the cause(s) and develop a treatment plan.  The best way to find a good sleep specialist in your area is to contact a sleep disorder center that is accredited by the American Academy of Sleep Medicine.
The following links provide more information on various sleep disorders and how to find a qualified specialist.  The American Academy of Sleep Medicine can help you locate a sleep center near you.

Please note that many sleep disorders centers focus primarily on treating sleep apnea.  You should ask if they have a Behavioral Sleep Medicine Specialist on staff to evaluate and treat chronic insomnia. The Society of Behavioral Sleep Medicine’s website is a good source of information about insomnia, how best to treat it and how to find a certified specialist.

3. How can lack of restful sleep impact my lupus?  Can insomnia be provoking more anxiety?  Oakland, Ca

Lack of sleep has been shown to increase inflammation and negatively impact your immune metabolic, and central nervous systems. Therefore, I consider sleep management to be an essential part of managing chronic diseases generally and SLE in particular.  Poor sleep can also increase sensitivity to pain, negatively impact cognitive function and mood. 

The relationship between insomnia and anxiety is best described as reciprocal. Anxiety can and often causes insomnia, but lack of sleep, worry about sleep, and insomnia can also feedback and make anxiety worse.  Insomnia may have multiple causes other than anxiety and so direct treatment of both insomnia and anxiety is often needed. A behavioral sleep medicine specialist would be most qualified to help with this type of complex problem.

4. I go to bed around 11:30 each night.  I wake up every 2 hours during the night so my doctor has prescribed 2 Trazodone100mg tablet each night.  I still wake up every 2 hours. I usually start my day at 7 AM. Any other suggestions about getting a restful night sleep?  St. Louis, MO

If your doctor does not suspect sleep apnea or another sleep disorder as a possible cause, you should consider having an evaluation for insomnia by a behavioral sleep medicine specialist.

If you have chronic insomnia, cognitive behavioral therapy for insomnia (CBT-I) is considered the front line, standard treatment. The treatment is usually brief (about 4-5 sessions), does not involve medications and is usually provided by a sleep psychologist who will help you make changes to your sleep patterns, address behavioral factors that could be maintaining your insomnia, and teach you ways to manage pre-sleep arousal (racing thoughts, etc) that may be interfering with your sleep quality. Research has found that CBT-I is as effective, if not more effective, than the best sleeping pills available with the added benefit that treatment gains are usually maintained over time (studies go out two years). So CBT-I is a good investment and it is covered by most insurances. CBT-I has been found to work well for patients who have insomnia occurring in the context of chronic pain, and other medical disorders. Many times it can also be used in conjunction with medication. It will be important for you to find a provider who is a trained behavioral sleep medicine specialist. There are several in Saint Louis. See the Society of Behavioral Sleep Medicine for more information on CBT-I and how to fine the names of board certified specialists in Saint Louis.

5. Like so many SLE patients, sleep is an ongoing problem for me.  On and off (but more on) Ambien and other sleeping meds for years, these aids seem to be my only chance for full nights of sleep.  Whether due to long term prednisone use and/or ongoing pain, sleep often eludes me.  What non-chemical aids can you suggest other than meditation and active relaxation to aid in falling and staying asleep?  Cherry Hills Village, CO

See my response to question # 4.  You should consider formal cognitive-behavioral therapy for insomnia (assuming your doctors have ruled out other sleep disorders that might also need treatment).  Keep in mind that the subspecialty of behavioral sleep medicine is relatively new and so most physicians outside the sleep medicine field know very little about cognitive-behavioral therapy for insomnia (CBT-I) or how to find a behavioral sleep medicine specialist.  Also realize that most non-sleep specialists will inadvertently assume that CBT-I is nothing more than education about sleep and the factors that interfere with it [e.g., cut down on caffeine, etc., sleep hygiene].  By itself, sleep hygiene education is rarely effective in treating chronic insomnia.  CBT-I works well, but you need to track down the right specialist. This can sometimes be difficult to find if you do not live near a large city. See link above to help locate one.

6. My regular doctor (not my Rheumatologist) has brought up having a sleep study done on me. I have noticed that my fatigue may be causing my memory to decline. I was diagnosed with SLE in 2008.  In the last year my fatigue has tripled and my memory seems to have gotten so much worse.  Do you believe a sleep study would be beneficial to me or for all lupus patients?  Juneau, AK.

This is an interesting question. Sorting out the relative contributions of sleep disturbance, versus lupus disease activity and their combination on fatigue and memory is not easy.  Bottom line is that if you have trouble with sleep frequently that has lasted more than a couple weeks and / or you experience excessive daytime sleepiness (fighting to stay awake or falling asleep during the day), you should obtain an evaluation from a sleep specialist.  They will conduct a sleep disorder specific physical exam, evaluate your symptoms and determine whether a sleep study is needed or not.  Sleep studies are not necessary to diagnose all sleep disorders.  Many factors are taken into account in deciding whether a sleep study is needed. Significant daytime sleepiness (versus fatigue), risk factors for sleep disorders that require a sleep study for diagnosis and treatment should also be considered. See my response to question # 1 regarding some preliminary findings that rates of sleep apnea and periodic limb movement disorder may be elevated in SLE.  Also read about the risk factors for sleep apnea in my response to question #1. All things considered, because sleep apnea increase risk for stroke, hypertension and cardiovascular disease, I think you are better off erring on the side of having a sleep study, especially if you have risk factors for sleep apnea. I would recommend that all Lupus with significant sleep symptoms obtain a sleep evaluation from a sleep specialist who can help decide whether a study is needed.

7. I agree I feel worst without enough sleep.  What is the best thing to do when you can't sleep because of pain and stress?  Mahwah, NJ

Pain and stress take a toll on sleep, health and quality of life, especially if you have lupus.  I would encourage you develop an overall disease management plan with your doctors and your family that includes specific approaches to actively manage pain, stress, and sleep.

Unfortunately, pain flares, bouts of insomnia, and the stress of life can rarely be completely eliminated, but they can be mitigated with lifestyle changes that reduce your overall exposure and ability to cope with stress.  Lifestyle changes can be very difficult to maintain without support from your family and sometimes seeking help from a mental health professional who specializes in stress management is needed. It really can make a big difference in the overall quality of your life and this could translate to better managed Lupus. Regular aerobic exercise is one intervention that helps reduce the physiologic effects of stress, lowers pain and may help with sleep (see response to question #15).  Training in some form of relaxation can also be beneficial for pain, stress and insomnia. This might be formal relaxation therapy conducted by a psychologist or alternative approaches such as yoga, tai chi or meditation are showing promising empirical results. In addition to making the sometimes tough lifestyle decisions and changes, it is also important to aggressively treat flare ups in pain and sleep disturbance.  Be in contact with your health care team early in the cycle to make sure that acute pain flares and severe bouts of insomnia are treated.  This might require medication dose adjustments and/or additions. Exacerbations of pain and insomnia that are inadequately treated increase your risk for developing depression.  Pain and insomnia interact in a vicious cycle, such that poor sleep makes pain worse and increased pain in turn worsens sleep.

There are some behaviors that you should avoid because they might make your sleep and pain problems worse and more chronic.

a) Many times when people experience pain, they get in the habit of retiring to their bedroom to rest. Over time this can associate your bed and bedroom with a state of physiologic arousal that is incompatible with sleep. This can lead to chronic insomnia that persists even when your pain and stress levels are low.  This phenomenon is a form of learning similar to Pavlovian conditioning.  When pain is severe and you need to rest, rest in a room other than your bedroom. Reserve your bedroom for sleep and not much else.  At night, avoid lying in bed awake and in pain for extended periods of time. (See response to question #2)

b) When you have a bout of insomnia, avoid compensating for a poor night’s sleep by sleeping much later than normal. Keeping an irregular rise time can throw off your body’s sleep-wake clock and contribute to sleeping problems. One of the best ways to prevent chronic insomnia is to get up at the same time every day, 7 days per week, even if you sleep poorly the night before. Similarly, too much napping can make it harder to sleep at night.

c) Don’t use alcohol as a stress reliever or a sleeping pill—it does not do a good job at either.  Many people use alcohol as if it were a sleeping pill.  Although alcohol may put you to sleep, the quality of your sleep will be poor and sleep can become fragmented as alcohol is metabolized. Call your doctor about your sleep problem. Don’t let it go and don’t try to treat it on your own.

8. I have received two different recommendations from two different Rheumatologists.  One told me to sleep whenever I'm tired and that naps are good for people with Lupus.  He also prescribed Amitriptyline to help me sleep through the night which makes me have a foggy brain, so I really don't take it. The other doctor told me not to take naps at all during the day so I'll sleep better at night, but I find that if I don't nap I start to feel achy. Also, it really doesn't matter if I nap during the day or not...I wake up every night 2 to 3 times.  I'm in a terrible vicious cycle.  What would be your best recommendation?  Colorado Springs, CO

It is always hard to know what to do with conflicting medical information. Both of your doctors are likely hitting on important points for you to consider. The best advice is to consult a sleep doctor who can help you sort out the best approach to napping for you.  The first doctor recognizes that fatigue and sleepiness are key features of lupus and so you may need to nap and sometimes obtain more sleep than the typical person. For some older adults (>60), napping is the only way to obtain adequate sleep.  As we age our sleep system becomes less efficient at delivering solid uninterrupted sleep in one shot.  So, for some older adults, obtaining 6 and a half hours at night and an hour nap during the day might be an ideal pattern for them.

On the other hand, your other doctor is making a very important point; your body has a set point for how much sleep it needs. When you obtain too much sleep, it will interfere with your ability to sleep the next day and this can set off a destructive pattern of getting too little sleep on one night and too much on the next.  These exaggerated swings can also interfere with the timing of your body’s sleep-wake clock and you can find yourself sleeping in the middle of the day and up all night.

The best approach may be some compromise wherein you limit daytime naps to no more than 30 to 60 minutes and schedule them so they are not random.  Schedule them away from your primary sleep period so they don’t “bleed off” your pressure to sleep at night.  I usually tell people not to nap after 5PM.

Regarding amitriptyline, morning sedation is a common side effect.  There are other medications you might consider that would be less likely to have these side effects.  So tell your doctor that amitriptyline is not right for you and ask for alternatives.  You should also consider cognitive-behavior therapy for insomnia (see response to #4).

9. I have trouble sleeping because of intense itchiness over entire body. I don't feel itchy as I fall asleep, but it wakes me up several times a night. There is no rash with the itchiness.   Clovis, NM

Hum…This is unusual. First step is trying to figure out the cause. Are you having any other symptoms?  Does it only happen at night? Are you taking any new medications or food at bedtime that might be the source? Are you using any new chemical to launder your beddings? Could this be perimenopause related? These questions are only the tip of the iceberg. If you and your doctors can’t determine a cause and if this persists and it interferes with your sleep quality, a sleep study might be helpful to determine if muscle activity is triggering arousals from sleep or if there is some underlying sleep disorder that might be contributing.

10. Is Melatonin acceptable to take in combination with the typical drugs prescribed to treat Lupus or related auto-immune diseases?  Sanford, NC

How melatonin interacts with other drugs is beyond the scope of my expertise. This question is best directed to your rheumatologist and/or pharmacist.  Keep in mind that melatonin is not regulated by the FDA so it has not withstood rigorous clinical testing for safety.

Studies of melatonin to treat primary insomnia have largely been mixed, though some evidence suggests it may be helpful for adults with insomnia who are older than 55 years of age. More research is needed.

Melatonin may be helpful in treating certain types of circadian rhythm sleep disorders, such as jet lag or delayed sleep phase disorder, but the proper timing of melatonin administration is very important. Patients with these problems should consult a sleep medicine specialist for advice on whether to try melatonin and when to take it based on their particular sleep patterns.

I am not aware of any studies of melatonin in SLE. In addition to having an effect of your body’s biologic clock, basic science studies demonstrate that melatonin has complex effects on immune system function. There is some interesting work being done studying the effects of melatonin using animal model of lupus. This preliminary work highlights the complexity. One study found that melatonin may improve immune function in female mice, but worsen it in male mice. 

In my opinion, based on current information, there are at least 4 reasons why someone with SLE should be cautioned against melatonin: 1) there have been minimal if any studies of melatonin in humans with SLE; 2) melatonin impacts the immune system in complex ways that could be detrimental to patients with SLE; 3) melatonin demonstrates mixed findings in treating insomnia; 4) melatonin is not regulated by the FDA. In short, the risk / benefit ratio is not favorable at this time.

11. I find that I have difficulty falling asleep but once I do fall asleep, I tend to sleep for a very, very long time. Once I wake up though, I'm still tired and sleepy. I never really feel rested. What can I do to actually sleep and not sleep too much?  Greenacres, FL

Force yourself to get up at the same time every day, even if you got little sleep the night before. Sleeping more than your body needs will negatively impact your sleep the next day.  Most people do not need more than 8.5 hours of sleep per night, but everyone is different and lupus flaring might increase your sleep need.  Finding the right balance will be key for you.

There is also the possibility that you might have a problem called delayed sleep phase syndrome.  This occurs when you body’s sleep-wake clock is set to promote sleep later at night than is compatible with your daytime schedule.  This is like being an extreme “night owl” and research shows that this has a strong genetic component. It is also fairly common among adolescents. Your clock can be “advanced” with properly timed bright light therapy and/or melatonin supplementation (see my comments on melatonin in #11). Morning sunlight can advance you clock, but as you probably know, too much sunlight can cause a lupus flare… Light therapy with a special light box (blue wavelength or 10,000 lux white light) may be your best bet if your problem is a circadian rhythm problem.  A sleep specialist can determine if you have a clock problem and help you reset it. 

12. Can the food you eat, particularly at night affect your ability to sleep?  El Paso, TX

Yes.  Realize that caffeine and other stimulants are contained in many food and beverages--not just coffee.  So, read the ingredients.  Caffeine is found in chocolate and many sodas—not just the colas.

The other major thing to consider is the possibility of gastro esophageal reflux (stomach acid leaking back up your esophagus. This is exacerbated when you lay supine.  During the day this causes heartburn.  At night, while you are asleep, you may not feel the pain, but acid reflux could still be causing micro arousals from sleep that interferes with sleep quality. So… it could be a problem and you would not know it. Talk with your doctor about trying an acid inhibitor to see if this improves sleep. Avoid spicy foods or overeating before bedtime.  Try not to eat right before bed.  You don’t want to go to bed hungry either, so if you need to eat an hour or two before bed, limit the quantity and eat something bland and easily digestible.  If reflux is a problem, elevating your upper back, neck and head with pillows might help.

13. I have lupus and am a new mother, any suggestions beyond the classic "sleep when the baby sleeps" for a new mom?  Glenville, NY

A common problem… it takes some time for newborns to develop a consolidated sleep rhythm. If you are breast feeding and are married or have a partner you might consider pumping and having your partner/husband help out according to a schedule.  You should consider buying, “Take Charge of your Child’s Sleep” by Judy Owens and Jodi Mindell.

14. Is there any bed that is better for Fibromyalgia and Lupus patients?  I was told that organic latex could help.  Elk Ridge, UT

I am not aware of any good research on this.  Probably more importantly, make sure the bed you have is in good shape and the beddings are cleaned regularly.  I know there are antimicrobial fabrics, etc.  Whether they help with FM or SLE… I am not sure anyone knows.  Sorry.

15. Does exercise help you sleep better?  If so when is the best time to exercise and what type of exercise is best?

Regular exercise is so important to maintaining good health and fighting chronic pain, fatigue, and negative mood. In general, the more active you are overall during the day both mentally and physically, the better your sleep will be at night. Vigorous aerobic exercise also does seem to improve sleep with some caveats.  Exercise elevates core body temperature. When timed properly this increase in core body temperature can either promote or hinder sleep.  If you stop aerobic exercise about 2.5 hours prior to your habitual bedtime, this may deepen sleep (increase slow wave sleep in the first third of the night). This effect seems to be related to the accentuated cooling off of your body that comes from elevating core temperature. The same effect can be obtained by passive body heating. Take a hot bath for 30 minutes, three hours before bedtime.  If you exercise or heat your body too close to bedtime, however, this elevation may interfere with your sleep.  When your core body temperature is declining –this is sleep permissive.  When core body temperature is increased, this is sleep disruptive.  Ever notice that you sleep better when it is slightly cooler? Keep in mind; the beneficial effects of timed core body temperature elevation are somewhat modest.  Exercising consistently in the morning can also be very beneficial for maintaining a regular sleep-wake rhythm so this is a great time to exercise too.