(This article was
originally published on the ProHealth website on September 18, 2019.)
Sleep problems are one of the most common symptoms of ME/CFS
(myalgic encephalomyelitis / chronic fatigue syndrome). Sleep dysfunction is a
critical piece of the complex puzzle that is chronic fatigue syndrome, and
ME/CFS and long-COVID 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.
Normal, Healthy Sleep
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:
- Stage
1 and 2 sleep (light stages of sleep)
- Stage 3 and 4 sleep (deeper stages of
sleep)
- REM (Rapid Eye Movement) when we dream.
Those deep Stages 3 and 4
are especially important for immune health, endocrine (hormone) function, and
energy; it’s 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), as follows:
- A hormone called tryptophan is converted into
5-hydroxytryptophan (5-HTP), with the help of vitamins and minerals
including iron, magnesium, calcium, B6, and folic acid.
- 5-HTP is then converted into serotonin, with the help of magnesium, zinc, vitamin B6, and vitamin C.
- Serotonin has many important functions in the body, including regulating mood and ensuring good quality sleep by converting into melatonin.
- Melatonin
directly regulates wakefulness and sleep. A healthy body naturally
makes more melatonin at night, when it gets dark, and less during the
day when it is light.
Note that melatonin and cortisol work together to regulate the sleep-wake cycle. In a healthy body, daylight triggers the body to stop producing melatonin and increase cortisol. Throughout the day, cortisol gradually declines, and darkness triggers the body to start producing melatonin and stop producing cortisol. Many studies have shown that most ME/CFS and long-COVID patients have low cortisol levels all the time. Luckily, the reverse is also true: that correcting sleep dysfunction can also help to normalize cortisol levels.
Sleep Dysfunction in
ME/CFS
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 measureable 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 aren’t
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.
Sleep Studies
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 it’s important to diagnose and treat those. Consider a
sleep study to diagnose or rule out a primary sleep disorder but don’t expect
it to find much with respect to your ME/CFS sleep dysfunction.
Treatments for ME/CFS
Sleep Dysfunction
The key to correcting our sleep dysfunction 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 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.
- Melatonin. You can directly supplement with melatonin, which is
readily available in any drugstore, at bedtime. Most use 3-5 mg of melatonin,
but you can start low, with just 1 mg, and go up, as needed, as high as 8-10
mg. Most patients find melatonin slightly helpful, but it rarely completely
corrects sleep dysfunction. Note that regular melatonin helps you fall asleep but quickly wears off, so it won't help you stay asleep. Extended release melatonin can help with both falling asleep and staying asleep.
- Tricyclic Antidepressants (TCAs). Most antidepressants work by
affecting levels of serotonin, and this class of TCAs, which increase
serotonin, are particularly sedating for most people, especially nortriptyline
and amitriptyline. TCAs also increase epinephrine (a hormone which affects pain
threshold), so they can also be helpful for pain. Use a lower dose for sleep
dysfunction than would normally be used for depression, and take it 30 min–2
hours before bed. Nortriptyline comes in a liquid, so it can be started at tiny
doses and very gradually increased. A study of ME/CFS patients taking 60 mg of
nortriptyline at bedtime showed improved symptoms (but start lower).
- Trazodone. A favorite choice of most ME/CFS experts for treating
sleep dysfunction, trazodone is also an antidepressant that increases serotonin
but in a different class than TCAs. One study of 66 fibromyalgia patients
concluded that “trazodone markedly improved sleep quality.” It is known to
increase stage 3 and 4 deep sleep, and it is the least likely sleep treatment
to lose its effectiveness over time. However, about 20% of the fibro patients
tested experienced tachycardia (racing heart rate). If that happens to you, try
reducing the dose or try something else. TCAs and trazodone also block
acetylcholine, another hormone, which can cause dry mouth or eyes, digestive
problems, and other issues with long-term use. Of the three, amitriptyline has
the most anticholinergic effect, nortriptyline less, and trazodone the least of
the three. Most start with 25 mg trazodone for sleep and go up, as needed, to
50-200 mg. All doctors should be familiar with using TCAs and trazodone to help
with sleep, as these are older, very common medications.
- Tryptophan. Alternatively, you can move further up the hormone
chain to increase tryptophan (which converts to 5-HTP and then to serotonin).
Although tryptophan is found in some foods, most of those are protein-rich, and
both tryptophan and serotonin drop after eating protein. So, experts suggest taking tryptophan
supplements instead, along with a carb-heavy snack or get your tryptophan from
more carb-rich foods, like asparagus, leafy greens, soybeans, sea vegetables,
cauliflower, and sunflower or sesame seeds. For supplements, start with 200-500
mg and work up – as needed – to 1000-1500 mg, taken before bedtime. However, experts do
not recommend supplementing with 5-HTP because it blocks other important
neurotransmitters and thus will only be effective short-term and then will stop
helping sleep and cause side effects. Don’t combine tryptophan with TCAs or
trazodone; that would increase serotonin too much.
- Adequate Nutrients. Whichever treatments you try, make sure you are
getting the vitamins and minerals necessary for each of these hormones to
convert effectively into the next (see Normal, Healthy Sleep above). This
includes plenty of magnesium, which some people also find mildly sedating, so you can take it before sleep. Be
sure to get a form of magnesium that is well-absorbed, like glycinate, malate,
or l-threonate (which also helps with cognitive function). Common types of magnesium found in most drugstores, like oxide
and citrate, are so poorly absorbed that they are used as laxatives!
- Prescription Sedatives. Traditionally known as sleeping pills,
sedatives are not the best choice for correcting sleep dysfunction. They help
you fall asleep and stay asleep, but they will not improve the quality of your
sleep. Older ones, like Valium, actually worsen your sleep quality, further
disrupting the deep sleep stages. Newer choices, like Ambien, Lunesta, and
Sonata, will not disturb sleep, but they also won’t improve it. They do have a
place, though, as an occasional extra treatment, when more help is needed.
- Over-the-Counter Sleep Aids. Antihistamines like Bendaryl
(diphenhydramine), anything with a “PM” in the name, and other over-the-counter
sleep aids are best used short-term only. Most use diphenhydramine as a
sedative, but your body quickly gets used to it and then it won’t work as well.
Additionally, it will not improve your sleep quality and has anticholinergic effects
over time. These are best used for just for a few days at a time, when you need
some extra help, especially if you need them for other reasons, like an allergy flare or temporary pain.
Our Experiences
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 sixteen years … and 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 (and
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 wasn’t working quite as well,
so we added trazodone, again starting low, at just 25 mg. We both ended up
(he’s 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 timed-release melatonin supplements (3 mg for me and 5-10 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 (both malate and l-threonate) and the other nutrients listed above. Lab tests can help to show which nutrients you need more of and which you have plenty of; for instance, we are both very high in B6, so we don't supplement with it.
My doctor was right: correcting sleep dysfunction has helped to improve all of our symptoms. When combined with other treatment approaches, like treating orthostatic intolerance and immune dysfunction, my cortisol levels normalized, too.
You can read more about our own experiences using trial and error to find the right combination treatment in my earlier post on Correcting Sleep Dysfunction.
Sleep Hygiene
Although the sleep dysfunction of ME/CFS can’t 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 night’s sleep requires an intricate coordination of
many different elements, including some of the basics:
- Keep your room dark
and cool. Studies show people sleep most soundly when their room is 60-67
degrees Fahrenheit (blankets are fine). Use room-darkening blinds, shades, or
curtains.
- Get plenty of
daylight during the day. As soon as you wake up in the morning, open the
curtains and get lots of natural light throughout the day--it tells your body
to stop making melatonin and make more cortisol, making you more alert. That
also helps when it gets dark, to tell your body it’s time to sleep.
- No screens two hours
before bedtime. Besides electronic devices being stimulating, blue light
emitted from them tells your body to stop making melatonin. Try reading a print
book, listening to an audio book, or just listening to relaxing music before
bed. If you must use an electronic device in the evening, use bluelight-blocking glasses (cheaper or try these, top picks in testing) or screen protectors. I sometimes read with an e-reader before bed, but you can adjust the display for less blue light. On my iPad Mini, I go to Settings, then click on Display and Brightness. Click on Night Shift, and you can set a time period each day when the display will switch to less blue light. Mine is set for Night Shift from 9 pm to 7 am, and I have the "color temperature" all the way to More Warm (which is less blue light). These settings should work on any Apple device.
- Wear warm socks. Research shows that warm feet helps you to fall asleep more easily and sleep more soundly. I tried wearing soft, warm socks for my naps and found that it works.
- Naps are probably OK!
One common sleep hygiene rule you should NOT follow is the advice to avoid
daytime naps. That’s for healthy people, not us. Our bodies often don’t make
enough energy to get through the whole day. It is far better to take a nap
mid-day than to push yourself to stay awake until you are “wired and tired,”
making it even harder to sleep at night. My after-lunch nap is an essential
part of my day and allows me to function into early evening. My How to Nap video has lots of practical tips for getting effective, proactive rest before you crash.
Myalgic encephalomyelitis/chronic fatigue syndrome and long-COVID 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 in a vicious cycle. 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 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 at ages 6 and 10, but one is now fully recovered after 10
years of mild illness and the other is living on his own and working, 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 the book, Finding a New Normal: Living with Chronic Illness, available everywhere. You can
follow her on Twitter at @livewithmecfs.
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