Sleeping all day?

[JenB]

As you may know, I am in the process of recruiting subjects for a documentary film on ME/CFS. It's been an interesting experience, speaking with many patients and hearing their stories. I've never met anyone in person with ME/CFS, and so being able to spend an hours on the phone talking to others has been wonderful.

It's also given me a sense of the incredible heterogeneity of folks who fall or are put into this group, and all of the problems associated with the shitty name (at least in the US) and vague diagnostic criteria.

Some subset of people who write to me about their illness say their primary symptom is sleeping all of the time, or having to sleep unusually long amounts of time at night. They are clearly struggling with their health, but have nothing that looks like the illness I have.

Before I dismiss that symptom out of hand, I wonder if anyone else here feels sleepy AND has the multi-system symptoms described in the Candian or International Consensus Criteria?

My illness has never made me feel sleepy. It might look like "fatigue" to a person walking into my room, because I am laying in bed all day. But generally, I'm laying in bed because my POTS is acting up, and my heart rate will go up when I sit up or stand, which yes, is tiring, but not remotely in the common sense of the words "tired," "fatigued."

 

[Sparrow]

I definitely fit the CCC. I have days where I do feel super sleepy, but they aren't a consistent feature for me. It's more of a once in a while thing (maybe once a month or so?), but on those days I literally can't stay conscious. Often I will get that in conjunction with my PEM. The rest of the time, I have POTS, and muscle exhaustion, but am not particularly sleepy.

But, when I first became ill, I was SUPER sleepy. I slept 23 hours a day (literally) for weeks. And I had the classic neurological issues, etc. quite badly at that time.

 

[Seven7]

I fit ICC, I have been officially diagnosed. I get bouts of sleepiness but is a symptom that comes and goes. Even though I am very functional, I go completely paralyzed (not for long, hours or day), so when I collapse I cannot stay awake.

 

[SOC]

I would not say sleepiness is a major factor of the illness for me or my daughter. Exhaustion, yes, but not sleepiness.

However, sleepiness comes with PEM for me. If I overdo (which rarely happens anymore) to the point of exhaustion, muscle pain, and (prior to antivirals) viral symptoms, I will sometimes have several days where I sleep virtually all day. It's rare, but when it happens I've learned the best thing is to accept that my body is screaming for absolute rest and give it what it needs.

My daily routine includes laying down, eyes closed, for at least an hour in the afternoon. If I fall asleep, I assume my body needed sleep and I let it sleep until it's done. If I don't fall asleep, I get up after an hour and get on with my day. If I don't do my supine rest daily, I get tired later in the day, but not that "I can't stay conscious" sleepiness I get with PEM.

 

[JenB]

Wow--I actually think it's fortunate that your body forces you to sleep when you need it. I wish mine did!

Thanks so much for sharing. Also, I found I did much better when I forced myself to lie down and close my eyes (whether or not I fell asleep) in the late afternoon. I got better and stopped doing it, and now I'm worse again and seem to have forgotten that trick. I will definitely start trying it again.

 

[ukxmrv]

When I was first sick it was an acute viral illness and sleep was long and deep. Never refreshing but I was unconscious and delirious with fever for long periods of time. It may be that words like "sleepy" and "tired" don't fit these sort of cases. This went on for years and years. Even now if I have an active infection or a bad cold or flu I have these long, unconscious type delirious sleeps but now without the high temperatures (vanished after the first 5-10 years of the disease). I rarely feel "sleepy" or "tired", all these feelings were lost in the first viral attack but I do sleep at night and the morning. In bed from 12 midnight to 11am most days. No afternoon sleeps unless acutely ill.

I have classic Ramsay ME from pre-CFS.

 

[caledonia]

I fit CCC and ICC. It's getting hard to remember, but I think early on I was sleeping 12 hours a day. My record is 15 straight. Then for a long time I had pattern where I slept about 8 at night, then needed to lay down for 2-3 hours in the afternoon. I would lay there exhausted and aching but not sleep.

Then I had a really rough year last year with Zoloft withdrawal. Now I sleep at night about 8 hours, then I sleep again in the afternoon for 2-3 hours.

I actually prefer falling asleep to just laying there. When that first started happening I remember being scared that I was becoming bedridden or wouldn't be able to get back up, but I eventually learned the pattern. Now it's just boring when it happens. I can't have any light or sound or move. I think this may be some kind of OI?

 

[taniaaust1]

I meet the CCC and the new International ME consensus criteria (have 92 different symptoms and test abnormalities) and thou Im not sleepy much now and being sleepy would be ranked way way down on my symptom list, if I do overdo things I can go into what I believe is narcolespy attacks (where I suddenly just fall asleep while trying to do things. I once fell asleep while doing dishes.. my head on the sink. So in my case I'd have to say Nacolespy is one of my ME/CFS symptoms (but only if Im crashing). Over doing it can make me go from an insomina state into a hypersomnia state.

About a year into my illness when I got so ill with it I became bedridden for 9mths.. I suffered from severe hypersomina and was sleeping up to 23.5 hrs per day.. (only waking once a day to eat, go to the loo and drink .. More then one time I didnt wake up AT ALL for 3 days/nights. I dont know whether to call that sleeping or "comatose" due to the ME. I think Im lucky it didnt kill me.

I too find it interesting how there is a sleepy ME/CFS patient group in which dont seem to have this illness severe but are very very sleepy (in my case Im only like that when very very sick with the ME). I know ME/CFS people who can do FAR MORE then me if they have to but tend to usually sleep most of the day (and night too) with enough other symptoms to make me believe they still have ME (eg MCS, IBS and FM with this symptom).

I think the presentation of the ME may vary depending on what stage of the illness one is at (more sleepy at start) and severity also does seem to play some part too (very severe patients I believe do sleep more also when people crash they sleep more).. but with some.. I wonder what is causing this sleepiness?? (maybe something to do with what coexisting things we have???)

 

[vamah]

I am sleepy a lot. At first I thought that this was due to insomnia, which was the first symptom I had that indicated that something was really wrong with me. Now I think that both are caused by the HHV-6 that triggered CFS for me. Even when I get a decent amount of sleep (with drugs -- without them I don't sleep at all) I am still very sleepy during the day. I think this is because the sleep I am getting is not "good" sleep. It isn't giving my mind or body the restorative rest it needs.