Research Brief
New research suggests that sleep disorders in people with chronic fatigue syndrome (ME/CFS) are comorbid conditions rather than a part of ME/CFS or an exclusionary diagnosis.
The complaint of non-restorative sleep (NRS) is pervasive in ME/CFS, but NRS is considered a sleep disturbance rather than a sleep disorder.
Researchers say that when people with ME/CFS also have sleep disorders, such as insomnia or restless legs syndrome, it doesn't appear that treating the sleep disorder helps alleviate symptoms of ME/CFS.
They also say a sleep-disorder diagnosis exclude an ME/CFS diagnosis.
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This gets a little tricky. The authors are correct that some of the current definitions for ME and CFS exclude primary sleep disorders. But, not if it is secondary meaning it is the result of the disease rather than exclusionary because it is separate.
For example research shows that in MS difficulty falling asleep and waking unrefreshed are the most common symptoms, but because a diagnosis of MS looks at far more than the one factor of fatigue no one says you don’t have MS if your sleep is disturbed.
As well, research shows that cytokines play a role in ME and CFS as well as sleep so the question is does cytokine activity in ME and CFS cause the sleep disturbances?
There is also info saying that people with ME/CFS do often develop Sleep Apnea later on,,,so depending on when diagnosis is made , we don’t know which came first.
And it certainly can be a co-morbiditiy and should not be an exclusion.
Restless Legs and any other disorders should be checked out and treated, to help as much as possible, but it doesn’t mean no ME/CFS or that Sleep will be all better…
PEM is a strong feature of ME/CFS, and doesn’t go away even if treat other parts of sleep.
I did develop Apnea many years after and then started CPAP–could sleep 4 hours instead of 2 sometimes–but still unrefreshed..with many different meds too.
Restless legs and neuropathy helped by meds also.
Wording is tricky–realy need doctors to properly diagnose and treat.
Most sleep tests are done just for Apnea,, and not during full hours of normal sleep schedule–so don’t even see all phases of sleep….
Insomnia often develops in later stages, often hypersomnia at begiinning. and often Circadian Rhythm problems–delayed and reversed cycles– if allowed to sleep when able, not as difficult as forcing “normal” sleep times.
I’ve not been diagnosed with CFS but with Fibromyalgia. I also have sleep apnea (on CPAP) and I have multiple degenerative joint issues such as spinal stenosis, bulging disks and thoracic outlet syndrome.
I never get more than a few hours of sleep. Burning parasthesias are usually what wake me up. I am so sleep deprived I barely function at all. Chronic migraines aren’t helped by this.
Nothing has really worked so far. I sure wish they would come up with something to help me sleep…it would make the rest of it a lot easier to cope with on a day to day basis.
I have had CFS for over 36 years. I have discovered that if I get a minumin of 9.5 hours of sleep every night that most of my symptoms dissappear. I do have insomia though. But If I take Doxepin four hours before bedtime it keeps me asleep for that long. I get up to pee once or twice but usually go back to sleep If I wear blinders and never open my eyes. I haved a little clock that will taell mw the time when I touch it so I don’t have to open my eyes. When the bathroom was too far to walk I used a pee bottle.
Good luck with your health.
DoyleB.com
If I sleep by myself in our guestroom I get the best sleep and feel terrific. When I sleep with my husband, his snoring and restlessness must disrupt me more than I realize as I do not feel the same the next morning. I have experimented with this enough to know that a good night’s sleep makes all the difference in the world with this condition. Susan