How I Sleep At Night

Sleeping Beauty by Henry Meynell Rheam

Sleeping Beauty by Henry Meynell Rheam

One of the great incongruities of ME/CFS is that despite our bone-crushing brain-stealing fatigue, we are frequently unable to sleep. And if we do sleep, the quality of the sleep is very poor. This quickly sets up an escalating feedback loop where poor quality sleep increases fatigue and other symptoms, which in turn make it difficult to sleep.

The Institute of Medicine report found sleep problems to be so widespread and severe that they made unrefreshing sleep (“feeling as tired upon waking as before going to bed” p. 86) one of the required symptoms for diagnosis. The IOM report includes a great review of evidence of sleep disorders in ME/CFS. Back in 2014, Dr. Cindy Bateman gave a talk on sleep problems, and you can still view the slides from her talk here. Those slides describe my sleep problems to a T:

  • Sleep apnea? Check.
  • Too much pain and fatigue to sleep? Check.
  • Orthostatic intolerance and heart rate variability? Check.
  • Sleeping too much? Check.
  • Difficult falling asleep? Check.

My sleep problems have changed over the last twenty years, and I’ve tried almost every treatment that Dr. Bateman described in her talk. It feels like standing on shifting sand, but over time I have found some things that work for me.*


For many years, I had difficulty falling asleep. I tried everything: relaxation techniques, benadryl, and finally escalating to prescription sleep medication. One of the challenges with medication is that insurance companies sometimes push back on long prescriptions for drugs like Ambien. You may have to spend some energy justifying the treatment in order to get coverage. I was fortunate that the medications helped my insomnia, and the side effects were tolerable. But I didn’t like sedating myself every night, and welcomed other options. What finally made a difference was adequate pain management. The medications in my pain management regimen also help with sleep, so I’ve been able to wean off the sedating drugs.

Sleep Hygiene

I want to mention this because it’s a bit of a pet peeve of mine. Doctors, especially sleep specialists, preach sleep hygiene, such as no electronics in the bedroom, only using your bed for sleep and sex, and so on. It drives me crazy. Even during my BEST times with this illness, I have spent many waking hours in bed. When a doctor asked me why I go to bed by 7pm, I just stared at her for a moment before saying “Because it’s the only place I can get comfortable and rest.” Where exactly do doctors think we should spend our time? Do you tell someone with the flu that they shouldn’t go to bed until they are ready to fall asleep? I do understand the thinking behind sleep hygiene, and I think we should try to be out of bed if we can. But only if we can. Normal sleep hygiene recommendations simply do not apply to ME/CFS. Ok, rant over.

Sleep Apnea

I was diagnosed with mild sleep apnea a few years into my illness. But my skin was too sensitive to tolerate the silicone mask of a CPAP machine – my skin just sloughed off where the mask touched – so I had to abandon treatment. I was evaluated again a few years ago, and the sleep apnea was significantly worse. There are now cloth masks with no silicone or plastic touching the skin, so I agreed to try CPAP again. I was amazed to find that it helped!

Treating the sleep apnea (and eliminating the many mini-awakenings during sleep) has improved the quality of my sleep, and now I need less of it. Before, I needed at least 10 hours of sleep a night or naps were guaranteed, and I still woke up feeling awful. Now, I can sleep 8 to 9 hours and not need a nap (unless I’m crashing from overdoing my activity).

Important note: If you have sleep apnea, you must be treated with a CPAP machine even if it doesn’t change any symptoms because you are at higher risk of developing cardiovascular disease.

Heart Rate Treatment

After some debate and experimentation, I decided to try a beta blocker to steady my heart rate during the day. The goal was to lower my heart rate (which would allow more activity) and address orthostatic intolerance symptoms. One problem we detected after I started using a heart rate monitor is that I would have episodes of tachycardia and accompanying nausea, dizziness and weakness. This was especially common in the morning.

The beta blockers helped with all those problems – I could be a little more active, and the tachycardia episodes disappeared. What I did not expect was improvement in my sleep. The beta blockers help me fall asleep at night, and control heart rate variability during sleep. This has improved the quality of my sleep, and that has led to much better mornings.


Before all these treatments came together, mornings were torture. I had to force myself awake, and spent half an hour in bed talking myself into getting up. For several hours, it was difficult to think. I felt nauseous and dizzy, and it was hard to function.

Once the CPAP machine and beta blockers were in place, this changed. It is still hard to get up in the morning, but it takes much less effort to get myself awake and out of bed. My theory is that these two treatments have taken a load off my heart, and improved the quality of my sleep. This has expanded my capacity activity a little bit overall.  But the big difference is in my morning symptoms: I can think! I can make breakfast! I don’t feel like I’m going to pass out or die!

It is both really important and really challenging to address sleep problems in ME/CFS, particularly because there are so many variations and complications. Based on my personal experience, it takes a lot of tinkering to improve just one aspect of sleep. Even with all of these things in place, I still struggle with feeling unrefreshed when I wake up. But the incremental gains I’ve made by improving my sleep have been worth it.

*One thing I don’t discuss here is the impact of caffeine. Stay tuned for a post on my caffeine experiment.

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35 Responses to How I Sleep At Night

  1. Anne Boyd says:

    I agree that orthostatic intolerance and ME/CFS makes nonsense of the “stay out of bed unless sleeping” sleep hygiene advice. I need to spend the largest portion of my waking hours either lying down or lounging in some position with my head and neck fully support and my feet UP. But some elements of “sleep hygiene” can be helpful. Trying to keep the bedroom as dark and quiet as possible during sleep time is a good one. “No electronics before bed” is a non-starter for me, but I do use f.lux on my computer to change the color temperature of the light emitted by the monitor after dark. I also make an effort to at least switch to the couch by the window in the morning, to maximize exposure to blue wavelengths. I try hard to keep to a consistent schedule of sleep and wake times, even if I feel like hell in the morning I try to become awake at the right time, and make up with a nap or two later in the day.

    I share your experience with beta blockers improving sleep. What I found, when I started beta blockers, was that I *could* nap for the first time – before that the “wired but tired” feeling mostly prevented daytime napping as well as cutting into nighttime sleep. Sometimes I get into a cycle where I nap way too much and too deeply – super-long naps of many hours, or two naps per day – but I now usually have a “normal” routine nap in the afternoon of 1-3 hours, especially when I’ve been undergoing physical exertion. I’m still not crazy about napping (especially the groggy feeling afterward,) but it’s better than never having enough sleep/physical rest round the clock. It’s sort of a patch-up on the overall fatigue, when it works.

    • Jennie Spotila says:

      I feel terrible after naps too. I also try to keep a consistent sleep schedule. No electronics before bed is bullshit, but I do find it helps to read a few pages of a physical book instead of looking at a screen right before sleep. I don’t necessarily retain what I’ve read, which makes for disconcerting “do I know what’s going on in this book?” episodes.

      • Trina says:

        Suggestion about reading before sleep: Read magazine articles (entertaining rather than cerebral), a short story, or anything that interests you but doesn’t require retention or continuity.

  2. Matt says:

    I’ll be staying tuned for the Caffeine special.

    I made the mistake of trying to go cold turkey last year. I was not ready for the bombardment of withdrawal symptoms, totally floored me.

    Gave me insomnia!

    Thanks for this post Jenny, very relevant to me right now.

    3 nights this week I woke up after about 2 hours sleep feeling awful, chests cramps, all that fun stuff.

    • Jennie Spotila says:

      Warning: the Caffeine Special involves rants and swears.

    • Jennie Spotila says:

      I thought about this a little more. I wonder if those nighttime awakenings with chest cramps, etc indicates hyperstimulation of your autonomic nervous system? A low dose of klonopin might be sedating enough. But I’m not a doctor!

  3. Chris says:

    Thanks as always, Jennie. I am interested in the beta blockers idea; I was on a low dose of Coreg for while, until a cardio told me to stop. Now I occasionally take a very low dose of Metaprolol to steady my heart. I think Cindy Bateman recommends Propranolol at low dose for OI, which I have. There are differences between these drugs–cardio selective or not (P is not) or, like Coreg, non selective and also an alpha blocker. I would love to hear if anyone has tried P and found it helped both sleep and OI?

    • Jennie Spotila says:

      I tried P in the late 90s and it was a big fat fail. I’m on M now, and it works a treat.

  4. I’m one of the people who are unable to survive without frequent, regular naps – I take a half-hour nap during each three-hour period (

    I don’t see how you make it through the day!

    I have semi-decent nighttime sleep, though, especially compared with your description above. Trouble putting myself to bed (I don’t wanna!), check. Trouble getting to sleep once I’m in bed (more often than I’d like), check.

    But that last one is often my own fault: if I haven’t done my recumbent exercises to give all my joints full range of motion and strengthening/stretching every little muscle group, then I’m too much in pain or too twitchy to relax enough to sleep.

    The doctor had me on Clonozepam for the Restless Leg Syndrome. When I weaned myself off it (I read, and didn’t like, the long term effects – you’re only supposed to be on it for 90 days, and I’d been taking it for five years under her direction), I figured out how to get the energy that was making my legs twitch OUT – by those exercises – and haven’t needed drugs for that since. It’s been four or five years.

    It takes time to exercise. I don’t feel like it late at night (it’s better to do them during my nap/rest periods). And then I can’t get to sleep, and I HAVE to do them.

    Everyone is different. I am grateful not to have major problems – I refuse to go through the procedure to see if I have sleep apnea; I don’t think I do. I sleep solidly once I get to sleep, and seem to be able to sleep later in the morning to compensate if I don’t get to sleep until very late. It’s manageable.

    If my sleep were as bad as yours, I’d be doing the kinds of things you list. Sorry it’s so hard.

    Mostly, when I get up from those short naps, I am in a better condition, able to think more clearly for a while.

    I do hate having to micromanage what the ‘normals’ don’t even have to think about, don’t you?

  5. Robert Morley says:

    Sorry, I only skimmed this because my partner’s calling me for lunch. I have the inverse problem in that I can get to sleep just fine, but often can’t stay asleep. I’ll wake up after three or four hours and be unable to get back to sleep. For me, I’ve found a delayed-release melatonin that seems to work really well. Only issue with it is that it moderately increases the myalgia and overall fatigue the next day…my assumption is that my body doesn’t clear it quickly and therefore it drags at me the whole day afterwards. Usually by the end of the day, that sensation is gone.

    I’ll re-read this in full later.

    • Jennie Spotila says:

      This is the one sleep problem I have not had. Would you consider sleep medication? A slow release ambien-type drug might keep you asleep, and after 8 hours or so should be out of your system (especially at a low dose). But I’m not a doctor!

      • Robert Morley says:

        Oh, you were replying while I was, Jennie! 🙂 I’d consider something like Ambien if the insomnia got really bad, but it usually doesn’t last for more than a few days to a week, and the melatonin (or Benadryl sometimes) seems to be adequate for me.

        The one thing that makes me slightly hesitant is that, like so many of us, I react strongly to sedatives now and get significant side-effects from them, so I tend to try new things with caution.

    • Robert Morley says:

      Having now read the article and all the comments, the one thing that strikes me is how different we all are in how our symptoms manifest. For me, even on days when I’ve only slept for three or four hours, I’ll often be unable to sleep until it’s bedtime again. When I do nap, it’s often spontaneous and difficult/impossible to fight off. It seems to happen more often just after I’ve eaten, but not exclusively.

      On the subject of “restful” sleep, it’s hard to define whether sleep is restful or not. Do I feel different when I wake up from when I went to bed? Yes, as long as I got a decent amount of sleep that night. But I’m not sure than translates to being “rested”; it’s more like sleeping was a necessary function that has now been fulfilled. If anything, at least physically, I have a lot less energy in the morning. I have to take it very slow or I’ll start to feel woozy like I’m gonna pass out. I don’t usually have to worry about that later in the day—even if I crash, I don’t usually feel like I’m going to pass out, I just feel bone tired and mentally drained/confused.

      I’m pretty sure it’s the lack of sugars/electrolytes from having not eaten in 6+ hours that causes that effect in the mornings. Fasting and I just don’t get along well, at least not if there’s any notable energy drain along with it. I’m on medication right now that wants to be taken on an empty stomach first thing in the morning, and I have no troubles waiting out the hour after taking it that they recommend…but only if I sit still for that entire hour. If the dog wants out more than once or twice, I’ll start to feel woozy just from getting up and sitting down those few times.

      Anyway, I think I’m getting off the topic a bit at this point, but as I said when I started out, it’s interesting to compare my sleep needs and the effects it has on me to other people here.

  6. Amy says:

    The “sleep hygiene” questions irritate me as well – especially after I’ve answered a series of questions about chronic pain indicating that I’m unable to sit comfortably (let alone stand) for more than about 10 minutes. (Sometimes I wonder what exactly doctors imagine most people – even those who don’t have issues with chronic pain and fatigue – are doing during the evenings?)

    I also have sleep apnea, and I had the same experience with a CPAP. The humming noise of the machine kept me awake as well, and I felt extremely claustrophobic with the hose. (Predictably, numerous doctors have rolled their eyes at me for saying I couldn’t tolerate it.) After that, my regular dentist made me a useless mouthpiece thing that never fit correctly. This year, after reading more and more about the health risks of untreated sleep apnea and in hopes that it might make some difference in my energy levels, I decided to get my sleep doctor to refer me to a specialist dentist for a state of the art mouth device that’s adjustable and that has a chip embedded in it to monitor compliance and sleeping position.

    I won’t explain the mechanics – it’s called a Somnolent and the company has tons of information on its web site. It is very expensive – and since it’s considered a medical device, many insurance companies (and Medicaid and Medicare) will cover at least some of the cost as long as it’s prescribed by a sleep specialist doctor. There are all kinds of prior authorization hoops to jump through and if anyone’s considering this, please learn from my stupidity and check with your insurer first instead of leaving it up to the dentist’s office.

    To my amazement, I’m actually able to sleep with it – the first few nights were hard, and every night it gets easier, and it takes a while to adjust the mechanics and the mouthpiece itself. I’m feeling optimistic – almost right away I noticed a difference in my energy level, and waking up in the mornings doesn’t feel like dragging myself out from a tomb or something – and also, I don’t ache all over when I wake up. I’m also not dreading the whole “trying to fall asleep” process as much – and I’m finding that I’m falling asleep faster and staying asleep longer.

  7. Amy says:

    PS The device is a “Somnodent” – didn’t catch autocorrect.

  8. laura says:

    Has anyone tried Xyrem? I know it approved for narcolepsy and have read testimonials people couldn’t function w/o it. It supposedly increases your deep sleep and that is what i know I don’t get enough of. That is the restorative stage of sleep, where the body repairs itself..I know it’s extremely controlled after it was misused as a date rape drug. In the 90’s tho u could get it at GNC or any other vitamin store.

  9. billie moore says:

    The CPAP machine has actually been considered as a treatment for GWS and CFS among veterans. I was on a Dept. of Defense Peer Review panel a few years ago, and there was a study proposal we looked at which wanted to study the effect of the CPAP machine on sleep quality among veterans with these diseases. It did not get funded, and the study authors really had almost no knowledge of CFS (which was not why it didn’t get funded). However, I was very interested in this because there was a person in our local support group who had used the CPAP machine faithfully, and it (possibly along with one or two drugs) increased his energy tremendously; he said he could, as a result of using it, swim for 1/2 hr (!), even though he had been sick with ME/cfs for many years.

    Importantly, the custom-made mouth device (which my husband uses very easily just for sleep apnea) does not do what the CPAP machine is theorized to do for those with ME. It is strictly for sleep apnea (and works!). Here is my very general understanding of the supposed reason for why the CPAP device might help: ME patients breath shallowly; they don’t inhale enough oxygen and do not seem to clear all the carbon dioxide from their bodies on exhaling. The CPAP device not only forces oxygen into the body, it forces carbon dioxide OUT. This is done very poorly by many with ME, leaving the lungs and blood with less oxygen and more CO2 than should remain. Often patients are encouraged to try to breathe deeply and exhale fully, but that is hard to concentrate on. (And I am sure there is more to why the CPAP might work, having to do with oxygenation of the blood, but I don’t want to posit things that I have no scientific knowledge of.) Here’s a good description of the breathing process from the NIH:

    I am sorry that so little has been done to test this device. It requires an understanding by the doctors and researchers of why it might work, and that is lacking.

    Regarding drugs, for sleep – watch out for Ambien. It can cause sleep walking resulting in accidents. I, who do not have ME, use cyclobenzaprine (muscle relaxant) a couple of times a week just to help me get back to sleep easily when I wake up during the night. BUT, it tends to be prescribed in 10 mg. doses, which would just about kill an ME patient. I cut a 10 mg. pill into 5 pieces (2 mg per dose), as I am very susceptible to drug effects. If you try it, go at it with very low doses and make sure you take it 12 hrs. or more before you want to be awake the next day. It should not be taken all the time, however. I know this is prescribed for ME, but no studies have been done on it that I know of. (So many things could be studied if the govt. would only allocate MUCH MORE MONEY!)

  10. kathy d. says:

    I cannot nap. Once I’m up, I’m up. And it takes a lot for me to sleep, even despite medications. And I’m never sleepy during the day or evening or sometimes not at all.
    I have a great deal of trouble falling asleep; it can take hours and sometimes I find that it’s 10 a.m. and I have not slept. It’s like I’m constantly wired.
    I sleep in two or three segments a night, never sleep through the night — and even with medication I sleep five or six hours a night. For a time in the winter, I was sleeping three to four hours a night in two shifts.
    Case in point: it is now 12:50 p.m. and I have not slept at all on Friday night or Saturday morning.
    Granted I took an Allegra yesterday due to allergies and had to use an
    inhaler which makes many people hyper and I had to drink some coffee
    to get through an event. So, no sleep despite medications.
    It is one of my worst problems.
    Two years ago I went to my doctor and said that in the prior four months,
    I had nine instances of it getting to be 10 a.m. and I had no sleep. He
    added a medication. It helped for awhile. Now it still helps, but I’m
    not getting anywhere near a decent night’s sleep except maybe once
    in two weeks I’ll get seven hours of sleep, but in two segments.
    So, it’s a real problem.
    I don’t have sleep apnea and I normally stay away from caffeine,
    except for one cup of tea when I wake up.

    • Jennie Spotila says:

      I know other patients with the same problem, sometimes going days without sleep despite medication and all the tricks. I don’t know what the answer is.

  11. John says:

    What time do you take your beta blockers?

    I’ve gotten into a pattern where I drink myself into a stupor and take double or triple amounts of lunesta/ambien and temazepam/xanax. I’ve got a stash that the doc doesn’t know about but when it runs out I think I’m done for.

  12. John says:

    Oh yeah, I also like red led light bulbs at night. You can even get the with remote controls, any other light just hurts my eyes. They come in tiny nightlight versions that are just about too weak to see by and vivid ‘Carrie’ versions that you would probably have to cover a lamp with a piece of cloth or something. I also use f.lux and even got orange safety glasses that I wear at night. I also noticed that stopping reading a tablet before going to bed reduced the amount of time to fall asleep.

    This is a good program to use in conjunction with f.lux-

  13. billie moore says:

    Jennie, have any other symptoms improved besides sleep quality since starting with the CPAP machine?

    • Jennie Spotila says:

      The improved sleep quality has had a cascade effect. I don’t feel like death in the morning. It doesn’t take as long for me to talk myself out of bed. I don’t feel like I’m going to pass out. And I need less sleep overall (less napping, etc).

      • billie moore says:

        More energy all day? Less pain? Less intense symptoms?

        • Jennie Spotila says:

          It didn’t affect my pain, and I wouldn’t describe it as more energy. The best way to phrase it is that my floor is a little higher, meaning after I started using CPAP, I could do the same amount of activity and not feel quite as horrible. And I could do a little more, but experience the symptoms at the level they were before. It’s more a matter of how functional I can be, rather than feeling like I have more energy. Does that make sense?

  14. I have an interesting take on the ‘sleep hygeine’ stuff, actually. I’ve been mostly or completely bedridden for many many many years so clearly usual advice is super inapplicable but there was a point when I switched from having one bed (which I stayed in all the time) to having two beds – I have a waterbed in my bedroom for sleeping (overnight and daytime naps, my CPAP is in there too) and an adjustable hospital bed in my living room for when I am “up” (my computer is set up here). It had an immediate and noticable positive effect on my ability to rest/sleep when I wanted too.

    Clearly this isn’t a solution that’s possible for everybody – it relies on your living in a household with only quiet people who don’t mind having a bed in the living room! But I share my flat with a nurse who’s often either asleep or out during the day and is awesome at being quiet when she’s home if I ask. Also if you’re at the level of illness where you can’t go from one bed to the other any more or can’t tolerate even mild sensory input from being in the living room then it’s a non-starter, obviously! But I would strongly recommend people who have the chance to do it to try it, at least for a while. I’m glad I did.

    Being able to switch between the waterbed and the memory foam mattress also helped my pain a fair bit. My body, especially my back and neck, seem to do much better when they are on different surfaces sometimes. Both surfaces have to be soft and comfy but this way they’re a slightly different type of soft and comfy and that helps too.

  15. John says:

    There’s a good thread on Phoenix Rising forums about ‘darkness therapy’, which is kind of the opposite of light therapy that I found very helpful.

  16. Unfortunately, these things we share, for sure. Much overlaps with FM, so it is difficult to know what is what, but in the end, it doesn’t matter, because in my mind, there is no doubt both are due to immune problems. The significance of sympathetic and parasympathetic (autonomic nervous system) is too great to ignore.

    I do want to clarify, because until I started pouring over the research on loss of heart rate variability in FM, I was also confused. I believe it to be, like the term chronic fatigue syndrome, misinterpreted because of the name, especially in light of POTS (sudden orthostatic tachycardia, heart rate abnormally high and unable to sustain homeostasis). However, the heart rate variability Dr. Bates refers to has to do with the LOSS of variability. The research we have now shows that heart rate variability (HRV) is a good thing and indicates good health. You cannot feel HRV with your pulse. You can only detect it on an EKG graph, which is measured in mm/sec. It is the loss of HRV in FM and ME/CFS that indicates poor autonomic response. This is so significant that Dr. Roland Staud and others suggest loss of HRV should be considered a biomarker in FM. Apparently, Dr. Bates believes the same is true for ME/CFS. This explains why I believe that future treatment for both FM and ME/CFS will target the immune system. I have been in contact with Dr. Bruce Gillis regarding the FM/a Test and will be posting a blog soon for awareness.

    I hope you don’t mind me making the distinction. Loss of HRV is an important indicator of autonomic nervous system and immune problems in FM and ME/CFS.

    Forward we go, my dear fellow advocate. I don’t often comment, but I do read all the wonderful things you do to keep us informed.

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