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The Elusive Mr. Sandman – Lupus and the Importance of Sleep

 

Hitting the hay, getting forty winks, waiting for a visit from Mr. Sandman – however you may coyly try to catch up or sneak up on sleep, it may still evade you if you are an individual with lupus. Why is the ability to fall into a deep slumber so difficult when you feel so exhausted?

Introduction

In a 2013 meta-study, Italian researchers found that up to 80% of individuals with SLE in various studies reported sleep disturbances and poor sleep quality.  51% of those individuals reported experiencing daytime sleepiness, 20% – 56% suffered from sleep apnea, and 23% – 50% experienced periodic limb movement (e.g. restless leg syndrome). “In summary, sleep disorders occur in more than half of patients with SLE, with a higher prevalence than in the general population.”  In other words, if you have difficulty getting enough healthy sleep, you’re not alone.

In 2017, more research on sleep was done at Medical University in Sofia, Bulgaria using the Pittsburgh Sleep Quality Index, based on a 12-item health survey and two lupus specific questionnaires.  The index rates seven aspects of sleep:

  • Subjective Sleep Quality, for which patients rate their sleep on a scale of 0-3.
  • Sleep Latency, which is the time it takes to fall asleep after the lights are turned off.
  • Sleep Duration, which varies naturally depending upon factors like age, but is usually expected to be 7 – 9 hours.
  • Sleep Efficiency, which is defined as the percentage of time asleep (usually measured in minutes) compared to the total amount of time a person is in bed.  A normal expectation should be at least 85% or more.  
  • Sleep Disturbances, which can involve many aspects that create a troubled sleep or waking up during sleep.
  • Use of Sleep Medication.
  • Daytime Dysfunction, which refers to a lack of enthusiasm or difficulty staying awake for daily functions like eating, driving or socializing.

How would you rate yourself with these criteria?   The 2017 research results showed that over 84% of all participants studied with SLE had a disturbed sleep, in particular in terms sleep efficiency, and that this had a significant effect on quality of life.   If you find that poor sleep quality is significantly affecting your quality of life, you should check with your healthcare provider about being referred to a sleep study.

In this article, we will look at why experiencing a restful sleep may seem impossible, and what you can do to try to turn the dream of healthy sleep into a reality. Gaining a better understanding of what may be standing in your way of “hitting the hay” will help you effectively talk with your healthcare practitioner about what you can do to map out a plan to safely and effectively deliver you to the “land of nod.”  Okay, I think I’m done with the metaphors!

Why is sleep so important?

According to the National Institutes of Health (NIH), healthy sleep plays three vital roles:

Healthy Brain Function and Emotional Well-being – The ability to sleep at night positively impacts memory, creativity, the ability to problem-solve, and your ability to effectively make wise decisions. Without proper sleep, you may experience erratic emotions and behavior, the inability to cope with change, depression, engagement in risky behaviors, and even feel suicidal.

Physical Health – Sleep has been proven to repair your heart and blood vessels, lowering blood pressure and decreasing the risk for heart disease. Healthy sleep can help you maintain a healthy weight, boost muscle mass, and maintain healthy levels of insulin. Sleep can also boost your immune system, protecting you from harmful infections and toxic substances as well as keep inflammation in better check. As almost any college student will tell you (including me those many years ago), never getting more than a few hours of sleep a night can result in a completely compromised immune system (for me it meant mono – twice).

Daytime Performance and Safety – getting adequate sleep makes you more productive and gives you energy. Good sleep quality makes you a better, more responsive driver and enhances your ability to safely operate machinery.  Missing even an hour or two of sleep a night can impair your ability to finish tasks, respond quickly, study for exams, and stay out of harm’s way.

What causes poor sleep in individuals with lupus?

Many factors can influence your ability to get deep, restorative sleep if you have lupus. The key reasons for poor sleep include:

Your Emotional Well-being – If you are feeling guilty, depressed, or anxious about your diagnosis and about not being able to do the things you used to, your emotional state can affect how well you sleep. If you have gained weight from the use of steroids, you may feel as though you don’t have control over your body, and this can be debilitating to your self-image, which can cause you angst and constant worry.

Medications – Along with weight-gain, steroids can “rev up” your system, making you feel anxious and energized, preventing you from falling asleep and staying asleep. You may also experience headaches as a side-effect from your meds which also may prevent you from resting, even as exhausted as you may feel.

Overlap Diseases – As mentioned earlier, you may experience sleep apnea or restless leg syndrome which can prevent healthy sleep patterns. You may also suffer from overlap diseases such as fibromyalgia, rheumatoid arthritis, or thyroid disease which can all make you wake up feeling more tired than you were when you went to bed the night before … even if you think you’ve sleep decently.

Getting a Better Night’s Sleep

If after reading this you are concerned about your quality of sleep, it’s time to speak with your healthcare professional. It’s hard to catch up on sleep the longer you’ve been sleep-deprived. Getting better control over your sleep patterns now will help you cope more effectively with your health.

There are many things that you can do to improve your ability to experience the rehabilitative sleep that your body and mind need:

Stay Away from Caffeine – Consider eliminating caffeine from your diet. If you have Raynaud’s, caffeine can exacerbate your symptoms, and if you have thyroid disease, you may be more sensitive to caffeine’s effects as a stimulant. If you can’t tear yourself away altogether from your morning “cup of joe,” limit it to just that – a cup in the morning, and that’s it.

Eliminate Alcohol – You may not be able to drink alcohol anyway, depending on your medications, but if you are still able to indulge from time-to-time, remember that alcohol is a stimulant, not a depressant as many of us believe. Just a glass or two of wine in the evening can prevent you from falling and staying asleep.

Don’t Go to Bed Hungry – While you want to try to not eat or drink anything heavy for a couple of hours prior to going to bed, don’t go to bed hungry, either. If you need to eat something, chose something easily digestible like applesauce or crackers.

Exercise – Exercising doesn’t have to be overly-strenuous. A gentle yoga or stretching practice, a walk in the fresh air, or a swim in the local pool may be all you need to not only improve your overall health, but also reduce the stress, adrenaline, and excess energy that stand between you and a more restful and rewarding night’s sleep.

Prepare Your Environment – Cut down on your exposure to blue light (phones, laptops, TVs, tablets, gaming devices) at least 30 minutes before bed. Keep your room slightly cool, and make sure to use comfortable bedding (a favorite comforter, pillow, blanket). Consider “white noise” in the background if it helps reduce the distraction of things like traffic noises that keep you awake.  As much as you love them, you may need to ban pets from your room, as they can be a disturbance when you are trying to sustain sleep. Consider the “15 minute rule” – if you can’t fall asleep within 15 minutes of going to bed, go into another room and relax until you feel like nodding off.

Manage Stress and Pain – Journal if something is troubling you, and get your thoughts out of your head and onto paper (don’t even consider spelling or grammar!). Read “Happiness: Increasing the Odds – and Neurotransmitters” for ways to beat stress. Speak with your healthcare practitioner about ways to manage any pain that specifically affects sleep, and in the meantime, consider taking a hot bath before bed or having your partner give you a massage to work the pain out.

Stay on Schedule – Try to go to bed and get up at the same time each day. Need to take naps? Plan them; make sure you take them at the same time every day and limit them to no more than 60 minutes. Try to prevent taking naps after 5pm – the extra sleep may feel good at the time, but may prevent you from falling asleep when you need to later in the evening.

In Conclusion

Lack of sleep can become a vicious cycle – the more you need, the less that becomes available to you. By addressing your symptoms and issues at the get-go and speaking with a trusted healthcare practitioner, you can learn to take control of this integral part of your health and well-being. Going beddy-bye should eventually feel more like a blessing and less like a curse.

 

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References

Leech, B. (2015). Overcoming sleep problems with lupus. Retrieved from: https://lupus.newlifeoutlook.com/finding-sleep/
Monv, S., Monova, D., & Ivanova, M. (2017).  Association between quality of sleep, quality of life and disease activity in patients with systemic lupus erythmematosis European League Against Rheumatism Congress. Madrid, Spain. DOI: 10.1136/annrheumdis-2017-eular.1450
Palagini, L., Tani, C., Mauri, M., Carli, L., Vagnani, S., … Mosca, M. (2014). Sleep disorders and systemic lupus erythematosus. Lupus, 23(2) 115-123. doi: 10.1177/0961203313518623
Sheats, R.D. (2016). Health-related quality of life assessment tools and sleep-disordered breathing. Journal of Dental Sleep Medicine, 3(2) 49-55.  Retrieved from: https://aadsm.org/docs/JDSM.3.2.49.pdf
Sleep deprivation and deficiency. (n.d.). Retrieved from: https://www.nhlbi.nih.gov/health-topics/sleep-deprivation-and-deficiency
 

 

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. 

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.