A Good Night's Sleep? Not with ME/CFS

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by Jody Smith



Thanks to the misleading name Chronic Fatigue Syndrome, the misunderstandings concerning sleep are numerous and contradictory. Those who are unfamiliar with ME/CFS often may conclude that we are sleepy all the time.

It doesn't really work that way.

Some of us can't sleep at all. Others sleep for long periods but never when they'd like to. Many of us lie helplessly awake all night longing for respite, only able to succumb to sleep as the dawn begins to break.

My own experience for a number of years was a reversal of the usual sleep-wake cycle. I rarely saw my family since I slept most of the daytime hours, only feeling a semblance of wakefulness after sunset. Long after my family had gone to bed, I was up and staring at walls, or online fumbling for information on whatever was wrong with me.

Some of us don't actually sleep as most people know it, but rather move back and forth in a zombie-like state of limbo between shallow catnaps and heavy-lidded and uncomprehending consciousness. We could be called "awake" but we have no energy to move, and cognitive ability is sketchy and ephemeral.

My son used to be stuck in wakefulness for 24 hours, then would sleep for the next 10 hours. When he'd come to, he looked like the walking dead. No, not walking. Draped over and molded to his bed.

Michael J. Breus, Ph.D., clinical psychologist, Diplomate of the American Board of Sleep Medicine, and Fellow of The American Academy of Sleep Medicine, described the sleep dysfunction of ME/CFS as involving a variety of abnormalities. ME/CFS can involve excessive sleepiness during the day, having sleep that is not refreshing or restorative, or insomnia. Other aberrations are obstructive sleep apnea, narcolepsy, and trouble staying asleep.

Breus went on to say that the connection between ME/CFS and sleep is poorly understood by the medical and research community. He cited research from the Victoria University in Australia which studied this sleep problem over the last twenty years.

More than 50 percent of people with ME/CFS experience sleep dysfunction. More than half also were seen to have sleep-related movement disorders like restless leg syndrome, or obstructive sleep apnea. People with ME/CFS have more problems with sleep than people with multiple sclerosis. Another study also indicated that almost half of people with ME/CFS had obstructive sleep apnea.

Research also indicated that almost 80 percent of those with ME/CFS had sleep that was unrefreshing, and 20 percent had narcolepsy or obstructive sleep apnea.

It is possible that pain may be a factor that contributes to sleep problems. Pain can make it hard to sleep. And lack of sleep can increase our experience of pain. This sets up a debilitating cycle that can be hard to resolve.

Other research showed that sleep is disrupted more often in people with ME/CFS than in people that are healthy or depressed.

Healthy people whose slow wave sleep was disrupted by fatigue and pain were affected in a similar way to people with ME/CFS. Some research has posited that those with ME/CFS get less slow wave sleep than their healthy counterparts. Since people with ME/CFS have been seen to spend less time in slow wave sleep and possible REM sleep than normal, it may be that they are just not getting restorative sleep.

The research has not yet led to definitive conclusions, and correlations in this matter are not clear.

There does seem to be a correlation between disrupted sleep and systemic inflammation. Systemic inflammation is commonly seen in people with ME/CFS. More research into this possible connection is needed.

Research involving the nervous system may lead to some answers, as it seems that there may be involvement of the nervous system with disrupted sleep. The nervous systems of people with ME/CFS often show alterations while awake and possibly while sleeping, which might impact their quality of sleep.

While little information is actually known in this area, it seems clear to researchers that disrupted sleep is a big factor in ME/CFS. Continued research targetting this area may lead to some answers.

That we are clobbered in many ways by sleep dysfunction is not news to those of us with ME/CFS. The fact that research has not found clear and useful answers is discouraging and frustrating for us as we continue to wait ... and wait. But the fact that researchers are looking for solutions for us and have been examining a few new pathways may be taken as cause for optimism for answers in the future.


Further reading

Chronic Fatigue Syndrome: How Does It Affect Sleep?
http://www.aasmnet.org/jcsm/ViewAbstract.aspx?pid=28736

The Sleep Doctor
http://www.thesleepdoctor.com

Sleep Abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review
http://www.aasmnet.org/jcsm/ViewAbstract.aspx?pid=28736

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I also wonder if low dose hydrocortisone treatment helps those with disrupted cortisol rhthyms by helping reset this clock and these are the people who can come off this type of treatment after a certain length of time.

In my case low dose hydrocortisone treatment didnt help my sleep get any better (in fact it didnt do a thing thou I had abnormally low cortisol on my test).

 

This would be a very good article to show relatives and friends who don't understand, I think.

The unrefreshing sleep is so frustrating in itself, but also more frustrating because no one understands how someone could sleep, but not feel like they have slept.

Pain is also a big problem. When I try to sleep through it, I have horrible dreams like someone is cutting me into pieces.

I too have been using some methylation supplements and some of the Pall protocol supplements. I don't notice any improvement with the pain, but I have noticed that I feel tired when I am supposed to now and sometimes wake up feeling like I have slept and had good sleep (It's been years since I have been able to say this). Hopefully, it will last. The problem I have now is being able to afford it.

 

This would be a very good article to show relatives and friends who don't understand, I think.

The unrefreshing sleep is so frustrating in itself, but also more frustrating because no one understands how someone could sleep, but not feel like they have slept.

Pain is also a big problem. When I try to sleep through it, I have horrible dreams like someone is cutting me into pieces.

I too have been using some methylation supplements and some of the Pall protocol supplements. I don't notice any improvement with the pain, but I have noticed that I feel tired when I am supposed to now and sometimes wake up feeling like I have slept and had good sleep (It's been years since I have been able to say this). Hopefully, it will last. The problem I have now is being able to afford it.

Mya,

I hope the article helps.

It's great that you've found something that is making a difference, even if it is only helping you to feel more rested.

 

Getting good sleep is huge. I have found several problems with my sleep, all related to poor methylation:

a) periodic limb movement disorder aka restless legs or feet twitching all night long and waking you up causing unrefreshing sleep. This is due to lack of magnesium, which is depleted at a massive rate due to poor methylation. I'm currently taking a large amount of magnesium glycinate to compensate. I should be able to decrease this supplement as I work on methylation and my magnesium regulation improves.

b) delayed sleep phase syndrome - you're awake late at night and sleep during the day. Mine was so bad that it kept moving later and later every day, until it moved all the way around the clock every month. This went on for years. I solved this by taking control of the light. In nature, morning light is blue which stimulates serotonin and wakes you up. In the evening, the light is amber, stimulating melatonin which makes you sleepy. When you use the tv, and especially the computer at night, they emit blue light, which wakes you up at the wrong time. The answer is to block all the blue night at night by either avoiding the computer/tv or wearing blu-blocker (amber colored) glasses or using software that turns your screen orange and black. You can also get out in the morning light or use a blue SAD light such as an Apollo Golite in the morning to reinforce the cycle.

This affects many people, but I believe we're especially susceptible to this due to poor methylation, which affects the levels of serotonin and melatonin we're able to produce.

c) catathrenia or breath holding while sleeping - some people make a groaning noise when sleeping. This rare and mysterious condition has no known cause or treatment (sound familiar?) The noise is due to holding your breath, then when you start to breath again, the noise is made. There can also be breath holding without the noise. This is more like what I have. I wake up many times a night with my heart pounding and racing. Sometimes I catch myself gasping for air. This is especially noticeable early in the morning during REM. I have been able to somewhat alleviate the problem by increasing B12, but I haven't been able to get the B12 up to a very high level yet. In addition the two catathrenia people who have gotten relief have done it through B12 supplementation or cleaning up their diet.

My hypothesis is that lack of glutathione in the brain stem (which controls breathing) is what causes this problem. Glutathione can be raised by treating poor methylation.

d) Excitotoxicity - again this is a methylation issue. Exitotoxicity is due to GABA/glutamate imbalance. GABA is calming, glutamate is stimulating. You might get some relief with GABA supplementation. I take it throughout the day. Fixing methylation should restore the balance.

e) High cortisol at night - the disordered cortisol is due to HPA axis disregulation, which causes apparent adrenal fatigue. In severe cases, (like mine), the cortisol pattern is extremely low at all times, but slightly higher at night. I call this apparent adrenal fatigue because I believe is actually a hypothalmus/pituitary signalling problem due to lack of glutathione in those organs. The adrenals themselves are not fatigued and would probably work quite well if only they got the proper signals. Messing with cortisol levels via hormones or Seriphos may or may not be helpful or may even cause adverse effects. Again, poor methylation is the cause, and treating methylation should fix this problem.

Rich Van Konynenburg discussed many of these things in his writings.

I would like to add to your discussion regarding excitotoxicity in ME and FMS.

EEG expert Frank Duffy discovered that ME patients experience a micro-seizure and he described alpha wave intrusion as being a major part of this finding. As you probably know, this is THE major finding in sleep studies of ME patients and I would submit this is the major reason why we do not get to deep sleep. As NMDA antagonists are some of the most prominent and successful medications for ME and FMS (both anecdotally and in clinical studies and these medications include: GABA agonists such as Neurontin and Lyrica, cannabinoids, opiates, dextromethorphan, and experimental medications such as MK-801, etc.) in helping with sleep, pain, and cognitive dysfunction in ME I would submit that these medications play a major role in ameliorating symptoms via the antagonism of glutamatergic pathways. The fact that GABA agonists such as Neurontin and Lyrica are also seizure medications also fits with this hypothesis.

In addition, the micro-seizure brilliantly explains the particular pattern of cognitive dysfunction found within ME; essentially a micro-seizure every 2-3 seconds explains the disruption of long term potentiation in memory, problems with maintaining focus and attention (imagine your brain doing a "soft reset" every few seconds) and issues with impulsiveness. When I used to experience the "raggedy Andy" fatigue (which I believe is more akin to a type of "bonk" or "hitting the wall" with a concordant drop out in blood pressure as we run out of anaerobic energy) I also used to experience an intense ADD-like symptom that felt as though my brain were hooked up to a "TV channel changer" and someone else was "switching the channels" of my brain every couple of seconds. I believe this was a more acute manifestation of the micro-seizure that occurred during this metabolically mediated hypotensive event (it occurred during the day as well but was much more subtle.)

Furthermore, these are the exact pathways in the brain that have been implicated in causing NMDA dependent (glutamatergic) hyperalgesia; another major part of the pain and sensory dysfunction found in ME and in FMS patients.

Interestingly, the three major causes of excitotoxic brain damage according to an article I read some time ago are: transient ischemia in the brain, direct pathogenic infection, and chemical disruption. Considering that research has found serious problems with blood flow in the brain of ME patients (SPECT and PET studies) and problems with "neurally" mediated hypo-tension (which I believe is mostly metabolically driven) it would make sense that this transient ischemia is, at the least, a major driver of excitotoxic brain damage and may even be THE major cause.

Also interestingly, according to one researcher (can't remember which at the moment) one of the minor subsets of Primary (pure pain) Fibromyalgia is a group whose FM subsides when dietary excitotoxins are removed from the diet and it would seem to me that this could be considered, in a sense, a direct chemical test for the hypothesis that glutamatergic excitotoxins play a major role in producing symptoms for those with ME and FMS (it's been found that these patients have a problem with the blood brain barrier that allows these exogenous versions of these neurochemicals access to the brain.)

This same researcher also noted that another subset of Primary FM are patients with Chiari Malformation, in which the brains of these patients "fall" down around the dorsal aspect of the upper spinal chord. It would make sense that the pressure on this area would cause ischemia in the dorsal horn and possibly the dorsal root ganglion, causing hyperalgesia as well (since the dorsal horn is the part of the brain/spinal chord implicated in FMS and hyperalgesic conditions in general and it's the part of the spinal chord that transmits sensory info to the brain. Additionally, autopsy research on classic ME patients from the 1950s and on modern "CFS" (ME) patients has found signs of hemorrhaging in the dorsal horn.)

Taken together, it makes a great deal of sense that this phenomenon of the micro-seizure and it's glutamatergic origin accounts for a great number of the symptoms that we ME patients experience and it fits well with a number of scientific findings. When one adds in the adrenal overload (causing problems with sleep initiation) and the pain (both hyperalgesic and the physical pain caused by micro-circulatory dysfunction in the skin and muscles being made worse by the pressure on the body when sitting or lying down as well as the resulting muscle stiffness that occurs with activity) it's no wonder we have issues with sleep.

The only aspect of sleep that I have yet to understand fully is the day/night sleep inversion but I suspect (without any proof or scientific support) that this may have something to do with adrenal issues as well when one considers that one of the few other illnesses that experiences this symptom are those with kidney failure (as the adrenal glands set on the top of the kidneys.) This is highly speculative though but i also makes me think you are right about the hormonal aspects of sleep disruption since my own thinking has been trending that way as well. I have seen studies demonstrating a large reduction in the size of the adrenal glands in ME as well; if this is evidence of this phenomenon I don't know.

So, in conclusion, I think you're right about the role of excitotoxic brain damage in ME. It's a major player in the pathophysiology for sure. Let me know what you think. Thanks.

 

I am wide awake at night, stay up til almost 4 pm and feel happy!!! I dance and sing...ugh. Then, the morning, I feel hopeless can barely get up, etc. I can sleep great and still wake up feeling like death. I wish stores were open at night, the beach was sunny at night, etc.

Also, I have pain and yes...you bet that interferes with sleep, but my sleep was bad before too, but it's worse now. I feel that my brain and hormones are so messed up and my body is in hyper mode and yet wound down all in one.

 

Spitfire some would disagree but I think you have to get back into the evening bed and morning arise. I'm probably the wrong one to advise how? as I've been addicted to zopiclone for the past 4 years (3.7mg) But from my understanding of the literature its so important for our body clock.
I always feel like rubbish in the morning - I get up anytime between 7.30 -10am - go to bed at 10-30/11pm.
I don't have a social life but manage to do normal things during the day in small bites - shopping etc

 

Spitfire some would disagree but I think you have to get back into the evening bed and morning arise. I'm probably the wrong one to advise how? as I've been addicted to zopiclone for the past 4 years (3.7mg) But from my understanding of the literature its so important for our body clock.
I always feel like rubbish in the morning - I get up anytime between 7.30 -10am - go to bed at 10-30/11pm.
I don't have a social life but manage to do normal things during the day in small bites - shopping etc

I don't think the evidence supports people with ME forcing themselves into conventional sleep patterns, e.g. with 'sleep hygiene'. As with exertion, I think that resisting what the body tells you it wants is more likely to do harm than good. I think that normal energy and normal sleep will only come when the underlying abnormalities have been addressed. Meds can help with the latter, and I think that rotating sleep meds may be the best way to go to reduce the risk of tolerance or addiction. I try not to take the same sleep med more than 4 days in a row, then have at least 4 days break from each one (replacing it with one or more different ones each time). I rotate co-codamol (paracetamol plus codeine), sedating antihistamines and melatonin, and combinations thereof.

 

I think thats what I'm trying to say really - how to achieve it is the big question? But you're right forcing the body is not a good idea - much better to find something that helps get you off to sleep at a reasonable time of night. If thats what you want - at the end of the day its more about that. If you live on your own I suppose it doesn't matter as much . Living in a family is a different ball game.

 

maryb, I would love to get into a sleep regimen that works. I tried to go to bed earlier and I just laid there, mind chirping so loudly....even with meds. There is something very wrong and like many with CFS, this started early on. My sleep went upside down. When I was in college with CFS, I would go to bed at 11 pm and be ready for school at 9 AM, when I was sick! I was a part timer. Then, the years went by, and my classes, I made later and later because I couldn't sleep before 1 am. Now, it's crazy. I can't emphasize how much I hate it.

When I lived in CA. I felt normal. My body clock from East coast time worked with West Coast time.

I love when I am sick with a cold or infection. I joke, but I can't wait to sleep. I go to bed early and get up early and feel like...yay, this is how people live.

I wish I had a family, I think that might help. Also, depriving myself of sleep during the day kills me and I take sleep when I can get it.

 

My sleep problems have always been in sinc with other me/cfs symptom fluctuations. Have always had the insomnia rather than too much sleep end of the spectrum. Used to have severe problems with insomnia, but now my average is to sleep around 6 hours a night, but with several interruptions waking approx every 45 minutes - 1 hour, which may be preventing full sleep cycles. I do go right back to sleep, but it's still an interruption. But I do wake feeling as though it was enough.....so maybe it is.

I did a sleep study years ago and it showed mild sleep apnea....not enough to attempt tolerating a cpap. From the CCD:

"Exclusions: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison’s disease, Cushing’s Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome.....

 

Interesting discussion. I'm up late again, obviously... From my experience, I think the critical thing is the quality of sleep - whether you can actually get into deep sleep, which is healing in every way. I never had that for years and years. When I got it, it made such a massive difference and I can really feel how the quality (not quantity, or time) of sleep makes a huge difference to everything else, for me at least. Early nights and mornings are great, when I can manage them, but it's so much easier said than done...when I'm itching, as I have been for the last week or so, I can't sleep anyway until I'm exhausted, so I might as well do something. I suspect that for many or most of us, all the conventional sleep hygiene advice is all very well, and a nice ideal to aim for, but it all just begs the question: But how?

 

I quite agree that quality sleep is the critical thing. How did you get it?

 

Mark Yeah, how did you get the deep sleep? I want it NOW.... please.

 

I think thats what I'm trying to say really - how to achieve it is the big question? But you're right forcing the body is not a good idea - much better to find something that helps get you off to sleep at a reasonable time of night. If thats what you want - at the end of the day its more about that. If you live on your own I suppose it doesn't matter as much . Living in a family is a different ball game.

I usually have no problem sleeping (my issue seems to be high glutamate, so taking N-acetylcysteine seems to calm things down enough to sleep). But for the first time in my life I had absolutely horrific jet lag when flying 9 hours east. If I tried to stay up an hour later or get up an hour earlier, I would feel incredibly sick - constant vertigo and my awareness sort of blinking on and off every second or something.

Eventually I tried some melatonin which I had from the Early Days. It makes me feel like zombie poop the day after I take it, but after two days of taking it shortly before I wanted to go to sleep at a normal time, I was back on schedule and not needing the melatonin anymore. I would not use that stuff on a regular basis, but for me it worked great in shifting me to a normal schedule. The thought that "sleep hygiene" could fix whatever my body was doing is beyond ridiculous

 

I agree - definately a "reboot" needed. In the early days I was unable to stay awake sleeping most of the day with no refreshment. Later on it became evident that the deep sleep cycle was missing - wired and tired interrupting constantly. Just don't have any answers except as my computer says "force shut-down" when trying to close (like programmes operating in the background) at least for a while. A month long treatment of Gabapentin (at epilepsy levels) did help me enormously. The terrible dreams stuck in REM sleep were gone.

 

I wake up feeling worse than when I go to bed. That's what I don't understand. Apart from the cortisol theory that it. Mine isn't very high at night but enough for me to feel "human" and achieve a few tasks that need thinking. Then I go to sleep and overnight it is all robbed from me. It's back to the dark, dim mornings and the long, hardslog through the day. Then comes the evening and I begin to feel better, only for the same horrible pattern to be repeated each night, every night.

My quality of life goes downhill when I try and achieve an early morning wake up and early morning sleep routine. That short period of feeling almost human disappears and my entire day becomes a haze of not been able to think or do much. I get much sicker as well with viral symptoms.

May be alone here but does anyone feel better if they don't sleep soundly? If i have a bad night and just doze off and on, the early morning crash isn't so bad.

What this tells me is that something bad happens in my body when I sleep. It may be the heart rythym thing or something else altogther. It could just be that the same cortisol reset doesn't occur.

 

My sleep, along with many other things, is a lot better since I started the leaky gut diet and supplements. Poor sleep seems to be a part of post-exertional malaise with me, and it is still bad sometimes when I have overdone things, kicking in two or more days later.

A good night's sleep makes me feel much better. Less than about 7 hours a night a couple of nights in a row makes me feel lousy. My mood is lower and my energy levels ditto.

I do wakes several times a night but can usually get back to sleep OK, and it feels as though I am getting the right kinds of sleep.

Contrast with when I was bad in 2010 - sometimes I seemed to be in limbo between sleep and consciousness, and wasn't even sure at times whether I was asleep or not or whether I had slept. I had been seriously over-exerting myself at that time and was also very stressed due to a sick pet.

 

All said is so familiar, and only keeping within a very limited envelope (as when able) is it possible to function daily. That's after quite a few years.

 

I quite agree that quality sleep is the critical thing. How did you get it?

Me too....I agree totally that it's about the quality. I see a dramatic difference on the days following good sleep, but have found nothing that makes it a consistent thing. I also think this should be top of the list for a tx plan addressing me/cfs.

 

I usually have no problem sleeping (my issue seems to be high glutamate, so taking N-acetylcysteine seems to calm things down enough to sleep). But for the first time in my life I had absolutely horrific jet lag when flying 9 hours east. If I tried to stay up an hour later or get up an hour earlier, I would feel incredibly sick - constant vertigo and my awareness sort of blinking on and off every second or something.

Eventually I tried some melatonin which I had from the Early Days. It makes me feel like zombie poop the day after I take it, but after two days of taking it shortly before I wanted to go to sleep at a normal time, I was back on schedule and not needing the melatonin anymore. I would not use that stuff on a regular basis, but for me it worked great in shifting me to a normal schedule. The thought that "sleep hygiene" could fix whatever my body was doing is beyond ridiculous

Word is that Melatonin is great for jet lag. Otherwise, I have found it helpful for sleep for maybe about a week.....then it just stops working, regardless of the dose. Sure would be nice to find a natural substance that would help on an ongoing basis.