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

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.

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.

 

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?

 

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.

 

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?

 

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. 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

 

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).

 

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.