A Good Night’s Sleep? Not with ME/CFS

January 30, 2013

by Jody Smith

woman before full moon

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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46 comments

{ 46 comments… read them below or add one }

Dreambirdie January 30, 2013 at 7:54 pm

thanks, Jody. Another good article.

I wish they had more ANSWERS as to how to get that sleep we so desperately need. :rolleyes:

Jody January 30, 2013 at 8:03 pm


Dreambirdie

thanks, Jody. Another good article.

I wish they had more ANSWERS as to how to get that sleep we so desperately need. :rolleyes:

You and me both, db. At least we know some people are looking.

Whit January 30, 2013 at 10:20 pm

Two ideas I have:

There may be a frustrating situation where our bodies actually don't have enough energy or the right kind of energy to sleep properly. We may be so depleted of energy and basic system functions can be so out of whack that we can't sleep. Which is a vicious cycle. I would be curious to see if there is a correlation between severity of CFS and severity of sleep problems.

There is also evidence of our systems being on alert. The nervous system, the immune system. There is evidence of hyperventilation in CFS patients. It could be impossible for us to sleep or sleep well because our body is in a kind of sustained fight or flight response.

Little Bluestem January 31, 2013 at 1:58 am

I have noticed that when my life settles down some and I am able to sleep more, I sleep better after a couple of days, i.e. when I am 'rested up'.

lansbergen January 31, 2013 at 6:03 am


Whit

I would be curious to see if there is a correlation between severity of CFS and severity of sleep problems..

For me it is and the more I improved the less sleep problems. It was related to the flare ups.

Now I can sleep all night and when I am tired during the day I can rest and take a nap.

Things are going more and more back to normal

Lotus97 January 31, 2013 at 10:43 am

I found that consistently getting 10+ hours of sleep a night (along with eating healthy, limiting activities and sources of stress during the day, and taking supplements) made a huge difference in my recovery. Unfortunately, I gained 30 lbs and had high cholesterol from my sleep medication so I had to stop. I'm also taking SSRIs now for depression which also interferes with my sleep.

shrewsbury January 31, 2013 at 11:29 am

Do you have the links to the research that you cite? Thanks.

Jody January 31, 2013 at 12:45 pm


shrewsbury

Do you have the links to the research that you cite? Thanks.

They are found under Further Reading at the end of the article.

Lotus97 January 31, 2013 at 12:55 pm


Whit

Two ideas I have:

There may be a frustrating situation where our bodies actually don't have enough energy or the right kind of energy to sleep properly. We may be so depleted of energy and basic system functions can be so out of whack that we can't sleep. Which is a vicious cycle. I would be curious to see if there is a correlation between severity of CFS and severity of sleep problems.

There is also evidence of our systems being on alert. The nervous system, the immune system. There is evidence of hyperventilation in CFS patients. It could be impossible for us to sleep or sleep well because our body is in a kind of sustained fight or flight response.

There's a study which examines a link between ATP and sleep
http://www.sciencedaily.com/releases/2010/09/100914100302.htm#
The researchers documented how ATP (adenosine triphosphate), the fundamental energy currency of cells, is released by active brain cells to start the molecular events leading to sleep. The ATP then binds to a receptor responsible for cell processing and the release of cytokines, small signaling proteins involved in sleep regulation.
By charting the link between ATP and the sleep regulatory substances, the researchers have found the way in which the brain keeps track of activity and ultimately switches from a wakeful to sleeping state. For example, learning and memory depend on changing the connections between brain cells. The study shows that ATP is the signal behind those changes.

caledonia January 31, 2013 at 1:26 pm

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.

Dreambirdie January 31, 2013 at 2:11 pm

Good post, Caledonia. :thumbsup: I have several of these problems. Still in the midst of figuring them out.

Tally February 1, 2013 at 7:29 pm

Great article, thank you.

I don't think pain has anything to do with sleep dysfunction though. I experience almost no pain (otherwise I fit ICC) but have completely messed up sleep cycle: awake during the night and sleeping during the day, or sleeping 20 hours a day, or staying awake for a whole day and then collapsing, some jolts and shocks waking me up etc.

Lotus97 February 1, 2013 at 9:23 pm


caledonia

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.

At least in the beginning, methylation can cause decreased glutathione, sleeplessness, and excitoxicity so someone should be aware of that when starting a methylation protocol.

MishMash February 1, 2013 at 9:23 pm

Part of neuro-immune illness is an inverted sleep schedule. Most of the MS folks have the same complaint. I had the same experience as Mark. Growing up with a dad who was in marine corps, and was definitely a morning person, made my sleep schedule a freakin nightmare. In fact, I'm what's known as an "edge sleeper". I start feeling most sleep when night is turning to day, or day is sort of late afternoon.

Little Bluestem February 2, 2013 at 1:33 am

I'd never heard of an edge sleeper, but that pretty well describes me.

Jody February 2, 2013 at 9:52 am


Tally

Great article, thank you.

I don't think pain has anything to do with sleep dysfunction though. I experience almost no pain (otherwise I fit ICC) but have completely messed up sleep cycle: awake during the night and sleeping during the day, or sleeping 20 hours a day, or staying awake for a whole day and then collapsing, some jolts and shocks waking me up etc.

Thanks Tally.

I agree that pain doesn't necessarily play a part in everyone's sleep dysfunction. My son who also has ME/CFS does not have alot of pain but his sleep has been messed up for 6 going on 7 yrs now. I on the other hand deal with alot of pain, but in recent years my sleep is pretty much in the normal range.

For some though, chronic pain can be just one more thing to block the ability to sleep, and there can be a never-ending cycle of pain contributing to lack of sleep which contributes to experience of pain, and round and round.

Banksy February 3, 2013 at 3:53 am

i normally fall asleep but than awake few hours after and fell dizzy and like someone hit me with a baseball bat in the back of my head. than i have to awake so this felling stop. after that im trying to fall asleep again but even if i manage the quality of that sleep is so bad that sometimes i wish i didnt even try. when my sleep is in balance im 60% recovered but if not im on 20-25% of normal.

heapsreal February 3, 2013 at 4:51 am


caledonia

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.

High night time cortisol isnt like cushings disease but just slightly too high to not allow us to sleep properly and during the day its just too low but not like in addisons disease just not high enough to allow us to function normally. Instead of having high morning to low night time curve of cortisol we are just a flat line.

Adrenal fatigue like u mention is not really whats going on but its a common term that sort of gets the message across. Your right in that i also think its the HPA axis malfunctioning. I think i posted an article on it in the past where it mentions the actually abnormality is in the hypothalamus in a part called the PVN- para ventricular nucleus which controls adrenal hormone function by sending messages to the adrenal glands. Im guessing its the PVN that is damaged during cfs/me and this damage either lowers total cortisol production or distrupts the cortisol rhthym. I think this cortisol rhthym has more to do with our sleep then circadian rhthym.

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. Those that have a total low cortisol all the time maybe the ones who need to be on HC therapy for life. Then there is a number of people who just cant handle any of these types of adrenal treatments. I dont really understand this yet but think that maybe those with very high reverse T3 levels would be at risk of side effects from adrenal treatments initially.

There are alot of other interwoven cycles and functions as well playing their parts like already mentioned gaba etc but also NMDA receptors, serotonin/melatonin. Personally i think thats why it takes a variety of treatments to effectively treat our sleep as we have to attack it from all these angles that are broken or maybe its just a matter of resetting or rebooting or sleep machinery. For some of us i think its just broken :(

cheers!!

taniaaust1 February 3, 2013 at 4:59 am


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.

Thanks. I didnt know narcolepsy was so common in our illness. I was sure I had that happening at times last year.

caledonia

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

Ive recently found out the same, the poor methylation was giving me sleep issues. Being on supplements to improve that has me now usually waking up at a decent time of the morning and not being all dazed and half asleep in the mornings (I hadnt been waking up this early and able to get up easily at this time for years and years).

I hope others who have issues with sleep consider that working on methylation may improve it.

taniaaust1 February 3, 2013 at 5:05 am


heapsreal

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).

Mya Symons February 4, 2013 at 4:52 pm

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.

Jody February 4, 2013 at 6:56 pm


Mya Symons

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.

synapse13 March 2, 2013 at 4:12 am


caledonia

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.

Misfit Toy March 26, 2013 at 1:29 pm

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.

maryb March 26, 2013 at 1:44 pm

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

MeSci March 26, 2013 at 2:01 pm


maryb

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.

maryb March 26, 2013 at 2:22 pm

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.

Misfit Toy March 26, 2013 at 6:02 pm

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.

Tristen March 26, 2013 at 6:59 pm

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…..

Mark March 26, 2013 at 8:34 pm

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?

Little Bluestem March 26, 2013 at 9:31 pm

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

Dreambirdie March 26, 2013 at 9:39 pm

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

Valentijn March 27, 2013 at 12:39 am


maryb

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 :p

Enid March 27, 2013 at 2:21 am

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.

ukxmrv March 27, 2013 at 4:47 am

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.

MeSci March 27, 2013 at 7:15 am

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.

Enid March 27, 2013 at 8:12 am

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.

Tristen March 27, 2013 at 9:20 am


Little Bluestem

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.

Tristen March 27, 2013 at 9:31 am


Valentijn

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 :p

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.

Mark March 27, 2013 at 1:25 pm


Dreambirdie

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

I rather suspected I'd get some questions on that front from people desperate for some of the same. I'm afraid my mileage probably varies so much that it won't be much use to many others to say how things worked out for me, and really it's a long and complicated story, but I'll try to summarise how it went for me…

I remember the first night in many years when I had good quality sleep: it was my first night on a very expensive new Tempur mattress. I slept for 6 hours and woke up feeling filled with unbelievable energy (as opposed to feeling like a truck had run over me during the night), and aware of having dreamed for the first time in many years. I had a couple more nights of good sleep, but then the itching gradually began to resume and after a month or two I couldn't sleep in that bed at all – but I did get a big long-term boost from having slept successfully even just for a couple of nights for the first time in many years. In particular, my long-term back and neck problems had gone, after 10 years of unsuccessful treatments with various therapies.

It wasn't as simple as that of course; the long-term issues remained and still fluctuated to a greater or lesser extent, but I did have a strong clue as to how sleep was affecting me, and what it resolved and what it didn't resolve.

The direct answer to how I got that deep sleep, really, is that I can't say for sure because it came during a year when I was literally trying everything I could think of and spending all the money I had left on all kinds of things. But there were 2 or 3 factors that really stand out. First, for the whole of that year I was following a treatment plan from an associate of Dr Myhill's, as a result of Biolab tests that identified chemical sensitivities. I eliminated synthetic chemicals in cleaning products, washing up liquid etc, and replaced with natural solutions. I went on an eilimination diet and ended up eating nothing but beef, potatoes and peas, and then also fruit smoothies, cheese and dark chocolate, for about a year. I was taking about 20 supplement pills a day – Co-Q10, B12, Omega-6, L-carnitine, zinc, multi-vitamins etc. (the supplements and the diet were both targeted specific to my sensitivities and deficiencies based on the biolab tests). I started filtering my drinking water. For most of these changes, I introduced them one at a time so I could see which affected which symptoms, and I'd say that B12, Co-Q10, and elimination of washing up liquid and washing powders in favour of natural solutions, were the most obviously beneficial.

But then, the other major issue for me was getting a safe haven where I didn't itch in contact with what I was wearing or sleeping on. That was incredibly difficult. The new tempur mattress was a great solution to that (neuropathic?) pain that only lasted a few days. The longer-term solution came from a semi-aniline leather sofa. Semi-aniline because, being a natural flame retardant, it didn't have to be treated with flame retardant chemicals which were and are my biggest sensitivity causing the itching and burning; stuff in washing up liquid is the second biggest sensitivity on both tests and my personal experience. Gluten free was also very significant. For about a couple of years, I slept naked on the leather sofa with the heating whacked right up. That was the only way I could sleep without itching. Once I could do that, I could sleep properly: it was my oasis. 90% of my time is still spent on this sofa, but at least now I can wear some clothes. :D

I still don't get great sleep, and I still have a degree of the itching/burning reaction most of the time, but it's massively lower level than it used to be and I generally sleep much better. I still get the same reactions if I try to return to a bed or wear general clothes though.

How does this apply to anyone else? It probably doesn't apply directly to many people. I haven't found many people who have the same kind of itching/burning that I have, although Prof Baraniuk has described it as a relatively rare subset of ME/CFS in which the itching/burning is equivalent to the muscle and joint pains (I get muscle pain as well when I'm very ill, but never very much joint pain). I think it's a rare subset and if we understood all these conditions medically it may well be a different condition to ME which has many similar symptoms. But anyway, the main conclusion I've reached is that when I'm experiencing certain types of pain (itching/burning) then I just don't enter deep sleep. What seems to happen is that after I haven't slept at all for 48 hours, I become able to fall asleep in a kind of paralysis: I sleep for 14-18 hours but I don't think I'm ever entering deep sleep. When I wake, in the exact same position I fell asleep in (I tested this) sensation returns very slowly, and when it does, the itching/tingling/burning gradually resumes – and I feel absolutely shattered after such a sleep.

So I just think there are certain types of pain – which may be so low-level you don't necessarily even notice them – which are constantly active (itching away and constantly sending nerve signals) which can prevent you from entering deep sleep. Then, if that pain is just constant, and becomes so constant that you may even become numb and not consciously be aware of it, then you are constantly unable to enter deep sleep. When that happens, nothing ever heals overnight (cognitively or physically); muscles don't recover from rest and so back pain becomes chronic because ordinary daytime activity never gets its rest and recovery period. All kinds of problems are unable to heal simply because they never ever get their natural rest and recovery period.

That's just my own mileage: I really don't know how generally applicable it is. All I know for sure is that certain types of chronic pain can prevent restful sleep, and this can go on for decades, and when that happens, your body never heals and the consequences of all that can include almost any of the symptoms of ME/CFS. So, as a hypothesis, I would suggest that it's possible for other kinds of chronic pain and chronic neuropathy to cause this situation, and it is even very much possible, from my experience, that sufferers may not be consciously aware of that chronic neuropathic pain if they have become numbed to it, or if other types of pain are masking it, and so it's possible that this whole basic pattern could be a common factor in many diverse causes of the same or similar symptomology.

One last caveat: although there is an obvious potential vicious cycle here (if you can't heal overnight, that could be the reason why the chronic pain continues), and one might therefore guess that could mean the whole thing is just a vicious cycle, in my case and I think for most of us, we know that there is also something underlying it all which is more fundamental and permanent. If it were just a vicious cycle and nothing more, we'd break out of it by chance sooner or later. But in my case, I know that even after I've made a very significant recovery and become largely symptom-free most of the time, and despite often getting decent sleep, nevertheless even after a few weeks or (very rarely) months of no noticeable burning/itching, if I just spend an hour or so sitting on the wrong kind of chair, the whole thing comes right back again. I have to avoid all the triggers constantly (though not 100%, I have more tolerance now and can do all these things for a short time before the effects build up), and no matter how 'de-toxed' or apparently healthy I get, the basic problem remains: the reaction has never changed, all that has really changed is that I avoid the triggers.

So I still haven't cured 'it' but I've learned to live better with 'it'. And I really feel for all of you reading this who haven't made such progress, because I know it is an unimaginable hell to anyone who hasn't experienced it. I really don't know whether any of what I have, or what has helped me, is directly applicable to others, but I do know that it took years and years, and thousands of pounds of treatment and thousands of pounds of expenditure, and constant experimentation, for me to slowly improve inch by inch, with constant setbacks. So I think it is possible that the same could all be true for some others, but of course it's also possible that I just have something different and none of this will work for you. And finally, I'm afraid to say that the list of possible triggers is probably endless, and I do suspect that hormones may themselves be a trigger for many of us, in which case women in particular who are in the situation I've hypothesised really may have little or no chance of escaping from their triggers in this way. All of the 'recovery' stories I've heard that are of a similar pattern to my own are males, as far as I can recall.

So perhaps all that is not very encouraging or helpful, in the end, but that's my experience anyway.

Marty March 27, 2013 at 3:40 pm

My problem is temperature instability. Every time I wake up, it is because I am hot, whether at night or from a nap. My temperature swings between hot and cold every half hour or so, 24 hrs/day. As soon as I cool off with a fan, I can go back to sleep. Since no one can sleep if they are hot, I don't need to look any further for some sleep abnormality. Wonder how many others find that their temperature instability affects their sleep?

Dreambirdie March 27, 2013 at 4:41 pm

I am always freezing. I sleep in long johns, down booties, and wear a fleece hat. I have 3 down blankets and the heat up to 77 degrees. Even with this, I sometimes get cold…. and If I get cold, I end up with viral symptoms.

I wish they made an electric blanket that gave off no EMFs. It would save me a fortune on my heating bill.

Tristen March 27, 2013 at 11:42 pm


Dreambirdie

I am always freezing. I sleep in long johns, down booties, and wear a fleece hat. I have 3 down blankets and the heat up to 77 degrees. Even with this, I sometimes get cold…. and If I get cold, I end up with viral symptoms.

I wish they made an electric blanket that gave off no EMFs. It would save me a fortune on my heating bill.

Thyroid?

Valentijn March 28, 2013 at 12:41 am


Dreambirdie

I wish they made an electric blanket that gave off no EMFs. It would save me a fortune on my heating bill.

Maybe you could get one (or several) of those cat-warmers which get microwaved, then the cat sleeps on the cat-warmer. :cat: I get the impression that those last most of the night, due to the insulation and/or whatever dodgy stuff is trapped inside of them.

Or maybe there's an alternative more suited to humans, working on the same basic principals :P

Little Bluestem March 28, 2013 at 2:47 am

You might want to check out:
ChiliPad by chili technology – a mattress that heats and cools the bed using water.
http://www.myzeo.com/sleep/shop/zeo-recommended/chilipadtm-by-chili-technology.html

I do not know how it heats the water because I have not yet checked it out myself.

I loved my water bed, buy my chiropractor did not. It was years before I quit longing for it on cold winter nights (and now I have reminded myself of it again).

Dreambirdie March 28, 2013 at 8:21 am


Tristen

Thyroid?

I've tested it and it hasn;t been significantly off, just a little. I am not willing to take the meds, because they make me feel A LOT worse.

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