Periods of ShutDown Fatigue

[Carrigon]

It seems like for several weeks out of the year, I'll suddenly go into what I call shutdown fatigue. It's like sudden gonna fall asleep sitting up fatigue where I could sleep and sleep for weeks and usually end up doing so. It's different from the usual year long stuff. I'm usually in a chronic state of mostly housebound. But I can be semi functional at home. This is different. And I'm going through a bought of it now. Came on suddenly, and I could sleep and sleep and can barely stay awake. Nothing really seems to trigger it, it just happens. And then I'm useless for a few weeks. Then it seems to abate on its own. It's very strange. But for me, it seems to be a part of this disease.

 

[jimbob]

I Get the same thing, only it lasts about 3-4 days. It comes out of nowhere and zaps all my strength. I have no interest in doing anything at all in this stage. Then, like you say, it's gone and just the "normal" fatigue etc.

 

[heapsreal]

What your describing is what i call a 'crash' and when i get it, it usually lasts a couple of days, 2 weeks was the longest and was pre av's. Is this what others class as a crash? now im abit confused at what others may think of as a crash. I will be interested to hear others responces.

 

[sleepy237]

I get this too, I have never had what I can call a remission so its pretty ongoing still. From Christmas till last week I was sleeping 17-20 hours a day. Now I can't sleep after a nap. When I have this what you call shutdown fatigue is when I sort of agree with fatigue being in the title of CFS. Like others say they have crashes but its been ongoing for me. Like cycles of sleep patterns. This is the fatigue that no one else but a sufferer could understand you wake up only to drop back off total consumed and you cant fight it. It actually scares me on its own but like people say we are healing when sleeping so best to go with it. I know how strong it is and total empathise with you. What are your sleep patterns like at other times? I go mixed with naps then sleep daylight energy bursts at night.

 

[Carrigon]

My sleeping has been erratic for awhile. I go through periods of time when I can get by on six hours. Then I go through periods of time when I will wake up after four hours and then need to go back to sleep for another six or more hours. But it's never really been regular in years.

I never think of this as a crash. Well, it's different from a flareup. Flares on me are severe pain with a whole other kind of fatigue. It's different. This is a shutdown. Like sleeping sickness. You feel like someone pumped you full of sleep meds and you can't stay awake for long.

 

[heapsreal]

In a strange sort of way a shut down fatigue i sort of enjoy as long as it doesnt last too long, because it seems to be the only time i sleep deeply and naturally, its the guilty feeling of doing nothing that gets to me and i dont get any pain either. I also agree with a flare up where the brain fog, aches and pains, insomnia etc get worse then normal and is different, i think for me the shut down fatigue is just when my body cant take anymore of the flare and just shuts down and does nothing. Sometimes i think if i could control when and how long it lasts and get 10 hours of it every night i would recover. I think for me a flare is the tired but wired feeling and shut down fatigue is my crash. The tired but wired feeling varies and is a flare when it becomes unbearable. I think everyone is different i suppose, its all upto interpretation.

 

[Carrigon]

There is NOTHING enjoyable about it. It's a horrible feeling of not being able to stay awake and being forced to go to sleep or you will fall asleep where you sit or stand. It's a feeling of the body shutting down, as in organ failure. It's a terrible, horrible thing. And when you are awake, you feel like you can barely even think. It's like being drugged.

 

[heapsreal]

enjoy is probably the wrong word but i find it alot less painful then the tired but wired feeling. Like i said it maybe different to what u are experience, which is why i mention that everyones experience is different and its all upto interpretation. Im sorry if i have offended u but in my experience i find it way better then the nights i had of no sleep, brain fogged to the max and aches and pains. Your experience of shutdown fatigue is obviously different to my experience, but i found it a respite to my normal constant tired but wired state. But i also came out of these states feeling better, so this state i was in must have been some sort of recuperative state i was in. u were obviously in a different state to what i was in as u came out of it feeling aweful. Im sorry u feel this way.

 

[sleepy237]

Totally relate to your sleep patterns. I get a lot of the shut down episodes. I dont know my only hint came from a psychiatrist that my parasympathetic nervus system is dominating which makes sense but how to stop it i dont know.

 

[Live And Let Die]

Some people here call that kind of crash the abyss which it is. It's a deep, dark, void place. Like being locked in a vault.

Living dead.

 

[Carrigon]

It's definitely a living death sentence. There is no life from this disease. For those of us who have it pretty severe, there is zero life from it. It takes away everything you have and everything you were and pretty much anything you will ever be. And you are left in a chronic state of nothingness, expected to exist like this. But you still tend to look well. So you get no compassion or understanding or anything.

 

[heapsreal]

Theres definately 2 ends of the scale when it comes to sleep, some sleep all the time and some of us cant sleep at all

 

[leela]

Quote Originally Posted by Carrigon:
There is NOTHING enjoyable about it. It's a horrible feeling of not being able to stay awake and being forced to go to sleep or you will fall asleep where you sit or stand. It's a feeling of the body shutting down, as in organ failure. It's a terrible, horrible thing. And when you are awake, you feel like you can barely even think. It's like being drugged.

I associate this feeling with an HSV attack. Even before I got ME, I used to get these overwhelming mandated sleep attacks, and I would forget that it was a kind of viral prodrome...I would have to leave work *immediately*, wondering how I was going to manage to drive,
feeling like I'd end up having to crawl to the bed. There was no question of pushing through or doing anything else.
By the next day or so, I'd have a herpes whitlow on my hand, and I'd remember, "Oh yeah, this is what happens before the herpes!" It was often accompanied by hyperesthesia on the dermatome involved (a hideous undescribeable sensitivity running down the arm and hand toward whichever finger was to get the outbreak.) There would also often be some tenderness in the lymph node on that side.
Carrigon, I wonder if it's a certain virus just suddenly getting the upper hand and activating?

 

[Carrigon]

I have often thought it was viral reactivation. I have HHV6, and I wonder if it's that one, or just another one. Who knows. But it's awful.

 

[Live And Let Die]

Yes Moon, it is like you are dying! I can remember a few times waking up and thinking that I was pretty sure I was going to die. I didn't think my body and mind could take one more second of it.

 

[Grampus]

I went through a period of this last year and it was awful. If I sat down for 5-10 minutes I would immediately feel my eyes closing like I was on some heavy-duty sleep meds! I felt drugged all the time. This was not good, as I have to work and work involves sitting at my desk in front of a computer all day. I would try to get up and move around as much as possible, but I would have to sleep in my office on my lunch breaks. I pretty much stopped going to my exercise class because I couldn't function at the end of the day.

I went to all kinds of doctors, and even got sent for narcolepsy testing. No one can find anything wrong, except for my gyno who ran some tests and said I have CFS from chronic EBV. Well....I did have mono as a teen.

Anyway, the only thing that has helped me through it has been Nuvigil. My neurologist prescribed it for me and luckily my insurance covers it. I only take it on REALLY bad days now (1/2 tablet)...you know...the kind where you can barely move/function and the brain is so foggy you can barely spell your own name. It's off-label for CFS, but it's worth a try.

 

[overtrain]

It's definitely a living death sentence. There is no life from this disease. For those of us who have it pretty severe, there is zero life from it. It takes away everything you have and everything you were and pretty much anything you will ever be. And you are left in a chronic state of nothingness, expected to exist like this. But you still tend to look well. So you get no compassion or understanding or anything.

Never seen it described more accurately. Dead on, no pun intended.

 

[SickOfSickness]

Yeah, I get these. My memory of them is fuzzy, but I know I have had them many times over the years. I think they usually last 2 to 4 days? Hm. I think they used to last longer when I wasn't as careful with my "energy envelope".

I also get crashes that are different.

I used to think it was when some vitamins/minerals were depleted in my body, and it took days to get them back up. But viral reactivation might fit for mine.

 

[alex3619]

Is anyone with this symptom taking evening primrose oil or consuming a lot of polyunsaturated fats? How about being on methylation or antioxidant protocols? Its a question, I am wondering if mechanisms associated with sudden sleep are involved, and this may mean series 2 prostaglandin synthesis leading to PGD2. PGD2 when made by a parasite is the sleep trigger in African sleeping sickness. I think we might make too much of it in the brain, which shuts the brain down.

 

[taniaaust1]

I think of that state as my comatose state... its just like going into a coma. I went into that state for months and months (Im not sure now how long.. that time is all too hazy to remember but I was bedridden for 9mths and this symptom was there in some of the bedridden time and time after that) .. it wasnt unusual for me to only be awake for 20-30mins in a 24 hr period which was the only time I'd eat and drink (I didnt wake up for nothing rest of time).. and then be falling asleep while eatting before I'd finish the meal. It is IMPOSSIBLE to stay awake. I was also extremely extremely weak with this extreme hypersomnia state (at times couldnt even feed myself)..

In my case thou it was like I was dying (I believe my body was shutting down) and I seriously thought I would die (at times I actually slept 3 days and nights straight...without even waking for food or drink!!) .. this period was thou easier on me as I slept right throu any pain (I had extremely severe fibro before this).. the need to sleep and just falling asleep, completely dominated all the other severe symptoms I had as well. (Note.. I had many viral symptoms before I went into this state..so I wouldnt be surprised if it was virally induced)

When awake in this state . I was soo dazed out that I was only partly there (half asleep still, often couldnt even speak). I dont have much memory of that time at all due to sleeping so much and being out of it so much at the very short periods I was awake so I guess that is a lucky thing as I wouldnt like to remember that time well.

I had a day where I was heading towards a similar state a couple of weeks ago (due to house moving and doing to much).. scary for me as I was worried I'd go back into this state which does put my life at risk (due to the no food and drink and only sleeping thing). I think I put a post at this forum, saying I was worried the house move was going to kill me (heading towards this symptom rather then my normal symptom flares, is one of the reasons why I got so scared.. if I went down in this way again with no one living with me to help by forcing me into waking up once a day.. I'd probably die).

This isnt thou at all my normal crash state where my symptoms just worsen..... but rather like a big shift in the symptom complex (insomina shifts completely to hypersomnia.. pain issue is no longer an issue to one etc etc). Something different in my body is occurring when this happens.