Do you sleep more as you become more severe?

I’m sleeping more during the day, and probably less during the night—I assume this is associated with increasing severity?

Do severe/very severe bed bound people spend most of the day sleeping or are they mostly awake and resting while awake?

On this live Physics Girl webcast there is a big disclaimer that she is resting but NOT sleeping….She is severe.

 

My sleep has been reversed for the last seven years since i became severe . Do not know if this is very common but have seen many reports of sleep reversal.

 

What do you mean by reversed? Sleep all day, awake at night?

 

I wish i could have a prolonged sleep but it is very broken . I now sleep on and off through the day . today i did not get up till nine pm .I did not feel tired enough to go to bed till midday .

 

I found that the more severe I got, the less sleep I was able to achieve. At my most severe, it was taking approx 3 hours to get to sleep and then waking constantly all night, getting about 15 minutes of sleep at a time. Now that I am more moderate (severe-ish end of moderate) I get to sleep in about an hour and wake up 2 or 3 times a night. I've never had sleep reversal nor felt like sleeping during the day.

(Boy do I miss the distant pre-ME days of just going to bed, sleeping for 8 hours and waking refreshed in the morning. Feels hard to believe that getting a normal night's sleep used to be so simple!)

 

Over the thirty years of my ME I have experienced what seems like every possible variation of sleep disturbance from hypersomnia via sleep reversal to insomnia, but overall I don’t think there any simple linear relationship between severity of my ME and the amount of sleep I am able to get. I have had insomnia and/or disrupted sleep patterns when mild and also when severe. Generally I did find when I was recording my activity levels that disrupted sleep patterns are a feature of PEM, but generally at such time my total amounts of sleep were, though fragmented, a pretty constant six to eight hours a day, even if I mistakenly felt I was sleeping more. If I was objectively sleeping less for a day or so it was followed by a rebound of extra sleep over the next few days. Certainly over a week my sleep levels would average to the normal six to eight regardless of what time of day the sleep periods occurred.

My ME is of the relapsing and remitting form, though over time relapses have been worse and remissions involve less improvement, giving an overall trend of deterioration. For me subjectively, beyond the association of disrupted sleep patterns linked to PEM, the only time I have experienced a potential pattern is with hypersomnia or marked increased sleep over a twenty four hour period occurring when I believe there were marked deteriorations in my underlying ME. This was clearly the case initially following the original active EBV trigger for my ME and following the seasonal flue that triggered my first major relapse when I could be sleeping as much as twenty hours a day. Subjectively it has also been to a lesser extent associated with relapses associated with specific episodes of over exertion or relapses with a more gradual onset. However in these situations the increase in sleeping time was less marked and I have no evidence that this was definitely an objective phenomenon.

In summary - Though my sleep patterns can be very variable and PEM is associated with disrupted sleep patterns, at such times it can feel subjectively I am sleeping more. However when I have recorded it although sleep invades more of my day I am sleeping pretty much the normal totals over a several day period. At any one time the total amount of sleep I need does not seem to bear any simple linear relationship to the current severity of my ME.

In contrast I do believe that when a deterioration in my underlying condition is actively happening, then I do sleep more, for example sleeping as much as twenty hours a day following acute viral infections.

 

I haven't noticed any correlation between severity and sleep length or quality.

 

My sleep pattern has become weird after a big crash last summer that drastically reduced my baseline. I am severe and bedbound. I fall asleep late (2-3) and wake up late (12-13) and sometimes fall asleep for a couple of hours att odd times like 18.

I’ve always been a morning person (even when mild and moderate) and I simply can’t get used to this weird sleeping pattern.

I have been trying to sleep more normal hours, to practice sleep hygene, but I cannot, no matter how hard I try, the exhaustion is so profound, I cannot force myself to stay away and reverse the cycle.

It’s psychologically difficult for me to accept waking up at 13. It makes me feel lazy and guilty, although I know I am neither.

So to answer the question in the OP, I sleep more and have a disturbed pattern since becoming more severe.

 

I find trying to force a specific pattern on my sleep makes things worse, and generally I feel better and sleep better if I just let sleep happen when my body decides. Obviously this is much easier for me living alone and not having worked for some years than it would be for others with external pressures on when they sleep.

I am also aware that some people are subject to enormous pressure from medical professionals and/or family to try to sleep normal hours. We have no evidence that sleep hygiene and/or ‘normal’ sleep patterns help or hinder fatigue and activity levels for ME/CFS. However as already said I personally find the strictures of the sleep police unhelpful.

When I did have sleep reversal it was part of a shifting sleep pattern, with sleep shifting later each day, so there were spells when I was in complete reversal and spells when I coincided with what is seen as more normal hours. My current pattern seems to have settled on the Medieval two sleeps pattern of several hours before midnight, then wide awake and only able to get back to sleep about 4am. However it is also very easy to trigger insomnia if I get wired or have too much sugar.

 

I thought this was the case I spent my first year as severe sleeping 15+ hours every day.

But now I’m at a point where I’m still the same severity and would give anything for a 7 hour night. (I sleep in 1 hr blocks and can never consistently sleep more than 5 or 6).

No idea what changed. I certainly prefer back when I was sleeping more.

 

I don’t know if it is anyone else’s experience, but I only experience hypersomnia in the initial phases of a major relapse: in the first year or so after initial onset or after a major deterioration. Though the norm in my ME is reduced or disturbed sleep, increased sleep happens when my presumed underlying condition deteriorates significantly.

 

My family exerts pressure indirectly, due to the fact that they have ”healthy people” type schedules. They try to be considerate of my needs, but that doesn’t always work. It will definitely be easier when my daughter grows up and moves out.

Doctors, and all other health care providers, definitely pressure me into what they consider the right sleep
hygiene. Since becoming severe I realise their advice is not only incompatible with ME/CFS, but also harmful. Sleep hygiene is just as much an obsession for them as exercise. They cannot concieve of a disease where ”normal” sleep hygiene and exercise are harmful, so it must be my fault, I must be doing something wrong to be this ill.

The only doctor who told me to listen to my body and not try to follow the sleeping rhythm I had when I was healthy, was the doctor I met at the ME-clinic.

 

I'm also lucky to live alone without any external pressure to practice sleep hygiene (I do shower every day though!), and I can let my sleep free-run naturally. If for some reason I'd have to control it to be in the socially accepted norms, I know from experience that my symptom severity (or at least sleep related fatigue) would rise and with it most likely the need to sleep more would increase too in the long run. My sleep specialist, who I've never met personally, deduced from my medical records that I have a behavioral (because I could sleep in normal times if I just tried!) sleep disorder and it's actually that which causes the symptoms, not the other way around. I find that unconvincing and prefer to control my symptoms by not controlling my sleep.

As for sleeping more when more severe. I too did sleep often 15-16 hours a day. Not straight sleep but fragmented sleep. Still miraculously following the 25 hour circadian rhythm. But when I learned to control my illness by resting (paradoxically) and by diet, my amount of daily sleep dropped to 9-11 hours and have remained there while my severity level has gradually, but very slowly, decreased.

This feels like a much more complicated question than it first looks like, with many different factors..

 

The severity and relapse periods didn't have any impact on my sleep. I've always had good sleep in general for the last 34 years of ME. My ME doctor found that 'unusual'.