Does your ME cause sleep inversion?

One of the most debilitating aspects of my ME is that the disease causes me major sleep inversion. On most evenings, after significant enough exertion builds up from the previous day(s), I primarily get a very strong brain wired-but-tired feeling and my gut starts becoming irritated.

I also get some worsening of other ME symptoms and, if I do fall asleep, I sometimes get intense psoriasis itching which will wake me up. All of this together is definitely PEM.

Without taking some medication to help me fall asleep these symptoms will make me feel wired and awake all night until they start subsiding early in the morning. If I keep adding cumulative exertion and do not aggressively rest these symptoms then become stronger and any sleep medication stops having any effect. My body quickly inverts to sleeping during the day and staying up all night.

If I aggressively rest and do as little as possible within a day or two I do not get these symptoms anymore at night. I am constantly having to reset myself, where exertion causes this inversion and then I have to stay up all night and the next day to get so exhausted and try to overcome the symptoms the next evening so I can fall asleep.

It doesn't always work and its so frustrating. For me this problem is one of the main reasons why my ME make it so difficult to work and try to live a normal life.

 

I no longer have inverted sleep, per se, but only because I work hard at avoiding it. I find waking up very hard, and if I don't get out of bed right away, I fall asleep again for up to 2 hours. If I do that often enough, my sleep 'wraps around' the clock, until it ends up reversed again.

I find that my natural body clock certainly wants to keep me up late and sleep through the day. I don't know why.

 

My entire life until a year or so before ME my circadian rhythm was normal and I always slept well. For about a year or so before getting sudden onset I remember that I started being more awake at night and having trouble falling asleep.

 

My daughter does not have full sleep inversion - good days falls asleep around 2-3am, but in PEM can go to 5-7 am. If she " naps" during the day sleep gets worse.

Sleep hygeine was a major input into a significant crash from which she did not recover back to baseline. We worked sleep back to 1am from which it would not budge, but she got less sleep overall.

Given the link to sleeping sickness gene expression , this is less difficult to understand, but makes life so much more difficult.

 

My sleep pattern is almost normal after a lot of work to get there. It takes almost nothing to screw it up again, though. Like @adambeyoncelowe if I don't get up (realistically, sit up) within the first few minutes of being awake, I am almost guaranteed to sleep another two hours or so. Then I will struggle to fall asleep at night, want to sleep in even more, etc...

I try to get up when my partner does. Luckily he's very helpful and will usually make coffee for me and bring it to me before he leaves for work so I have to sit up (and won't have to get out of bed until my body is sort of working). We now have a coffee machine in the bedroom as well, for when he's away or late.

The wrong food, PEM, not enough sleep, or being active too late, are all things that will mess up my sleep instantly.

 

@Alvin

 

Difficult to answer the question as at present my sleep is quite good, but like others the slightest thing destabilises it and at times I can get total sleep inversion.

I have answered 'yes' to the question as my ME 'can cause sleep inversion and does so at times', though it 'is not doing so at present'.

 

Same here. It feels like I constantly have to put in effort, simply to keep up a sleeping rhythm that is close to normal. A bit like you have to keep running on a treadmill to stay at the same place.

 

To me this feels like a yes too. If one has to put effort to try and keep a normal circadian rhythm or if slightest things causes your ME to push you towards inversion then seems like my situation.

I’m also currently having to exert more on a daily basis then I think most others here because I work part-time (and used to full-time until end of last year).

How much are you exerting on a typical day? If you were to start exerting more would this definitely trigger sleep inversion?

 

I had complete sleep inversion for about 6 months at one stage. Supremely infuriating! Attacked it with 3 things:

1. Light therapy early in the day.
2. Melatonin in the evening and at night.
3. Rest, rest, rest.

I don't know which, if any, of the above made the difference but eventually my body clock started shifting about 1 hour at a time every few days or weeks until it was back to normal again. I still get insomnia but that's not sleeping day or night, so different from sleep reversal.

Looks like you may have identified the solution yourself.

Yes, it stinks.

ME and Normal Life do not coexist, only ME and your New Normal. And however frustrating that may be – and it is mighty frustrating! - in my experience it's best not to waste precious energy on fighting your new normal, it's an unwinnable battle. The war, on the other hand, we can still hope to win one day, but that will be courtesy of some clever researchers, not because we're soldiering on through the symptoms.

 

Could the hypothesis that ME-caused low cortisol, particularly dipping too low in the evening, be an explanation for the symptoms I describe?

It could be that ME causes our cortisol levels to be too low, due to metabolic dysfunction in the adrenal gland cells or something else. This would make sense given the symptoms I only seem to experience at night. As cortisol levels, particularly in the evening, would dip too low and therefore our immune system becomes overly activated, causing higher levels of inflammation etc.

Are there any negative long-term effects for PwME taking low-dose hydrocortisone?

 

Same here with the wired and tired and gut becoming irritated. Insomnia is a sign of severe PEM for me. At it's worst I will not be able to sleep at all and will lie awake all night. I usually only have one or two nights like this now and then improve but in my severe years the insomnia was extreme, no sleep or only 2-4 hours. This went on for many years. I finally stopped counting how many hours I had slept around 2010, 9 years after my severe onset. I felt I was getting more sleep and not so concerned anymore about it.

I often felt like I could go off to sleep in the afternoons in those severe insomnia years but I had an experience of going off to sleep and waking up with another awful layer of weakness, as if my blood pressure had dropped too much. It took hours and hours to pass. Because of this I couldn't allow myself to catch up on sleep in the afternoons because I felt so much worse.

 

For me these symptoms are some of the earliest signs of PEM, but just like you if I keep exerting the PEM ramps up and insomnia becomes so extreme that sleep meds have zero effect and I will not be able to sleep for two days.

I almost always crash hard at the end of that with a severe worsening of all my symptoms especially neurological ones, including not understanding what is going on around me, unintelligible speech, agitation, balance issues and strong light and noise sensitivity.

It’s so interesting you mention eventually falling asleep and waking up later feeling on another level of fatigue and hell. I get the same thing if the PEM and insomnia are too strong. Will eventually collapse asleep but wake up only 2-3 hours later feeling so disgusting and sick I hate it.

 

Another possible explanation for the symptoms I described could be straightforward brain overstimulation from the exertion. Our ME poorer functioning brain cells (due to metabolic, inflammatory, or immunological dysfunction) might build up too many waste products too fast, such as lactate, which cause neuroinflammation. Or it simply could be that our immune system becomes more overly activated after the exertion which indirectly causes neuroinflammation.

I certainly feel like my brain is overstimulated and “inflamed” during these evenings. I’ve taken memantine on and off over these years and it seems to have no positive effect on these symptoms.

 

Read the James L Wilson book Adrenal Fatigue which helps understand this enormously.

"What Is It?
The term "adrenal fatigue" was coined in 1998 by James Wilson, PhD, a naturopath and expert in alternative medicine. He describes it as a "group of related signs and symptoms (a syndrome) that results when the adrenal glands function below the necessary level." He says it’s usually associated with intense stress and often follows chronic infections like bronchitis, flu, or pneumonia...."

 

The more activity i do the worse i sleep... and once a crash hits hard there is no chance of sleep at all, until i have rested myself out of the crash. Who can sleep when you feel that ill? The pain & buzzing prevent any kind of sleep & the wired & tired mentally is hideous.
In the winter months this will cause inversion after a wk or so, but it doesn't result in inversion in the summer. I hypothesised it must be due to light so i rented a SAD light box & found it almost miraculous. So (once the crash is over - cant use it till fully over for obvious reasons - it being a bright light) using a light box in the mornings - even if i then go back to sleep after using it, & dont use it every day, it puts my body clock back to normal within a few days.

To be honest i dont bother with 'sleep hygiene' as the 'authorities would have it, because the things they say simply don't fit my pattern/experience - for instance if i'm struggling to sleep at night a nap in the afternoon helps not hinders for me. The more sleep i get, regardless of the time of day, the easier it is to drop off. So while i rarely fall asleep during daytime rest periods i'm always pleased if i do because it heralds a better night's sleep for me. - This may be psychological as after a nap i expect to drop off easily that night, but it was happening for a while before i properly observed it, so more like a virtuous cycle perhaps.
And i find waking/going to bed at the same time makes no difference.

ETA so i voted no, because I think since the same crash pattern (while crashed i just sleep whenever i can, being grateful for the relief from symptoms that oblivion brings) but that same pattern doesn't cause lasting inversion in the summer months, it seems that the crash is simply the vehicle rather than the cause of it.

 

I agree with this. It is important that people explore the 'sleep hygiene' ideas to see if they can find things that help them, but there are no right or wrong answers for people with ME, only what seems to help and what does not seem to help that individidual at that point in time.

The 'sleep police' can do as much harm as good.

 

OMG. How did this never occur to me. Though I'd want one that came with an IV drip line.