Sleep problems are one of the most common ME/CFS symptoms. Sleep dysfunction is a critical piece of the complex puzzle that is chronic fatigue syndrome, and ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) patients are eager for treatments that will help to improve and normalize their sleep. When I was diagnosed with ME/CFS by my primary care physician, she said, The first thing to do is to correct your sleep problems. That will make all of your other chronic fatigue syndrome symptoms improve. She was right! Here are ways to help you fall asleep faster, sleep better, and wake up feeling refreshed.

In order to treat ME/CFS sleep dysfunction, it helps to understand what healthy sleep looks like. A night of refreshing sleep consists of sleep cycles, moving through various stages in a predictable pattern:

Those deep Stages 3 and 4 are especially important for immune health, endocrine (hormone) function, and energy; its when our bodies recover and rebuild.

A healthy endocrine system, which produces hormones at the right times and in the right amounts, helps regulate sleep (and everything else).

Why do ME/CFS patients feel like we are half-awake all night and still exhausted in the morning? Traditional sleep studies comparing ME/CFS patients to healthy controls often find no measurable differences in our sleep cycles, though some show reduced total sleep time and sleep efficiency. Newer studies, using entirely different ways of measuring sleep, though, are finding that ME/CFS patients have more disruptions in REM sleep and deep stage (3 & 4) sleep. Our brains will sometimes jump right from REM or even deep stage sleep into being awake or in light Stage 1 sleep, instead of cycling through each stage as is normal. These REM disruptions in the studies correlated with worse symptoms the next day.

The hormone side is also not entirely clear. The few studies of serotonin levels in ME/CFS patients have shown contradictory results, though some do show abnormal serotonin function, indicating our bodies arent controlling serotonin the way a healthy body should. This matters because sleep deprivation causes a multitude of serious health problems, worsening every aspect of ME/CFS.

When an ME/CFS patient mentions sleep problems, doctors usually send him/her for a sleep study. The problem is, as noted above, that even carefully controlled scientific studies often fail to show abnormalities in our sleep using standard measures. Sleep studies do have an important function, though. They are designed to diagnose primary sleep disorders, like sleep apnea, restless legs syndrome, and narcolepsy. Plenty of ME/CFS patients also have a sleep disorder (some studies indicate we have a greater risk of primary sleep disorders), and its important to diagnose and treat those. Consider a sleep study to diagnose or rule out a primary sleep disorder, but dont expect it to find much with respect to your ME/CFS sleep dysfunction.

The key to correcting our sleep problem at its source is to target those hormones that are responsible for good quality sleep. This is different than taking sedatives to knock you out; it means actually correcting the problem so that your sleep feels normal and natural, and you wake up feeling refreshed. There are different ME/CFS treatment approaches to try, and it often takes some trial and error, sometimes combining treatments, to find what works best for you. Work with a doctor to find the right combination and to prevent increasing serotonin too much.

My son and I both have ME/CFS, plus tick infections, but I listened to my doctor all those years ago and treated sleep dysfunction first. Once my son got sick, we did the same for him, and we have both been sleeping a solid 9-11 hours of good quality, normal-feeling sleep every night for over twelve yearsand waking up feeling refreshed most mornings.

I first tried amitriptyline at its lowest dose, but it left me groggy in the morning. Next, I tried nortriptyline liquid in tiny doses (we started with that for my son) and gradually increased the dose as needed, until we each leveled out at an effective dose; then we switched to more convenient capsules. After a year or two, the nortriptyline wasnt working quite as well, so we added trazodone, again starting low, at just 25 mg. We both ended up (hes an adult now) at a combination of 50 mg nortriptyline and 100 mg trazodone (low doses compared to what is used for depression). We both also take melatonin supplements (5 mg for me and 8 mg for him), and I have a prescription for low-dose Ambien that I only use rarely, when I travel. We both also take plenty of magnesium, B6, and the other nutrients listed above.

Although the sleep dysfunction of ME/CFS cant be corrected just with standard guidelines for sleep hygiene, you do need to promote better sleep, in addition to whatever treatments you try. As one sleep expert explains, getting a good nights sleep requires an intricate coordination of many different elements, including some of the basics:

Myalgic encephalomyelitis and chronic fatigue syndrome are a complex web of intricate causes and effects, involving every system in the body. When sleep is disrupted, problems in the endocrine, immune, and nervous systems occur, worsening all ME/CFS symptoms. Similarly, when you treat sleep problems in ME/CFS, there will be improvements in all of these systems, leading to improved symptoms. Best of all, improving those systems will lead to even better quality sleep, in a positive domino effect. The best treatment approaches not only help you fall asleep and stay asleep but improve the quality of your sleep so that you wake up feeling refreshed and ready for a new day.

Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS since 2002 and also has Lyme disease. Both of her sons also got ME/CFS, in 2004, but one is now fully recovered after 10 years of mild illness and the other just graduated from college, with ME/CFS plus three tick-borne infections. She writes two blogs, Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com, and wrote an upcoming book being released in fall 2019, Finding a New Normal: Living with Chronic Illness. You can follow her on Twitter at @livewithmecfs.

Resources:

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Castro-Marrero, J, SezFrancs, N, et al. Treatment and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: All Roads Lead to Rome. British Journal of Pharmacology (March 2017) 174(5), pp. 345-369.

Cleare, A. The Neuroendocrinology of Chronic Fatigue Syndrome. Endocrine Reviews (April 1, 2003) 24(2), pp. 236-252.

Field, T, Hernandez-Reif, M. et al. Cortisol Decreases and Serotonin and Dopamine Increase Following Massage Therapy. International Journal of Neuroscience (July 7, 2009), pp. 1397-1413.

Jackson, ML, Bruck, D. Sleep Abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review. Journal of Clinical Sleep Medicine (December 15, 2012) 8(6), pp. 719-28.

Kishi, A. Presentation: Sleep Disturbances in ME/CFS. The National Academies of Science, Engineering & Medicine Health and Medicine Division. May 5, 2014.

Kishi, A., Natelson, BH., et al. Sleep-stage Dynamics in Patients with Chronic Fatigue Syndrome with or without Fibromyalgia. Sleep (November 1, 2011) 34(11), pp. 1551-60.

Lapp, C. Using Antidepressants to Treat Chronic Fatigue Syndrome. CFIDS Chronicle (Summer 2001).

Morillas-Arques, P,Rodriguez-Lopez, CM,et al. Trazodonefor the treatment offibromyalgia: an open-label, 12-week study. BMC Musculoskeletal Disorders(Sep 10, 2010) 11, p. 204.

Rowe, PC, Underhill, RA, et al. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: a Primer. Frontiers in Pediatrics (June 19, 2017).

Yamamoto, S, Ouchi, Y, et al. Reduction of Serotonin Transporters of Patients with Chronic Fatigue Syndrome. NeuroReport (December 3, 2004) 15(17), pp. 2571-4.

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Treating Sleep Problems in Chronic Fatigue Syndrome - ProHealth

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