1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Sleeping all the time?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Ivana, Jun 16, 2012.

  1. Ivana

    Ivana Senior Member

    Messages:
    112
    Likes:
    10
    Hi All

    I was wondering if anyone can help me out with something? I have been sleeping about 15hrs a day recently.. Not sure why. I know the illness is 'chronic fatigue' so sleep would make sense.. but I don't usually sleep this much. All I've been doing recently is lying in bed all day, with no energy.. just drifting in and out of sleep. Had a trip to the ER the other day (no help, of course) so maybe that shook something up?? But even before that, I was sleeping 13 hrs. I usually sleep 10 and don't nap during the day, with some activity. Now it's just sleep, wake up, yawn, sleep etc.
    Any ideas?

    Best wishes
    Ivana
  2. adreno

    adreno 3% neanderthal

    Messages:
    2,310
    Likes:
    1,444
    Tundras of Europa
    I wish I could sleep 15 hours. I'm lucky if I get 8.
  3. Ivana

    Ivana Senior Member

    Messages:
    112
    Likes:
    10
    omg i hate it, i'm literally yawning all day when i'm not sleeping. Ive been taking a lot of nurofen for inflammation.. Could it be that?
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,219
    Likes:
    4,516
    australia (brisbane)
    Another infection or viral reactivation??
    Maybe get some more blood work from doc.
    Anything very different occurring should be assessed by a doc, easier said then done.

    good luck.
    SOC likes this.
  5. Ivana

    Ivana Senior Member

    Messages:
    112
    Likes:
    10
    i got blood out the other day, no infection... Kdm thinks i might have lyme, but that cant be detected in a normal test..i just tried my oxygenator, maybe it'll help ???
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,219
    Likes:
    4,516
    australia (brisbane)
    if sleeping all the time, make sure your getting hydrated, easy to become dehydrated when sleeping all the time as your normal fluid intake can drop, maybe a sports drink regularly.

    hope things improve soon for you,
    cheers!!!
  7. Ivana

    Ivana Senior Member

    Messages:
    112
    Likes:
    10
    i got blood out the other day, no infection... Kdm thinks i might have lyme, but that cant be detected in a normal test..i just tried my oxygenator, maybe it'll help ???
  8. Ivana

    Ivana Senior Member

    Messages:
    112
    Likes:
    10
    oh thank you, heaps, i'd forgotten about that. Btw sushi said u might know of a place here in Oz that does IV oxygen therapy?

    Cheers
    I.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,219
    Likes:
    4,516
    australia (brisbane)
    Dont know about IV oxygen, look for an intergrative practioner for something like this, they would also do iv fluids like saline or vit c .
    I havent heard of IV oxygen before?? Oxygen therapy in normal medical situations is being used less and less, it appears that oxygen isnt given unless oxygen saturations are less then 93%, the theory is that too much oxygen increases free radicals which can be harmful for people etc. eg is all chest pain/heart attacks would be given oxygen routinely, now only given when oxygen saturations less then 93% as the increased free radicals can cause their own problems.
    taniaaust1 likes this.
  10. Tito

    Tito Senior Member

    Messages:
    300
    Likes:
    406
    I too sleep a lot. When I first became ill, it was between 14 and 17 hours a day. I once slept 40 hours uninterrupted. Now it's 10+ hours at least. I've noticed that if I try to sleep less (using an alarm clock), my day is just hell with massive brain fog, pain, loud tinnitus, etc. So I don't try to fight it any longer.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,854
    Likes:
    5,691
    Albuquerque
    Hi Ivana & Heaps,

    Not IV oxygen therapy directly, but IV hydrogen peroxide. Many holistic docs in the States will give this. I have had a lot of them and they were tough on the die-off front, but did seem to kill critters and I had a very good period afterwards. The thing to look out for is oxidative stress.

    Best,
    Sushi
  12. Calathea

    Calathea Darkness therapy

    Messages:
    1,086
    Likes:
    537
    Scotland
    I got this in my first year, when I had a lot of flu-like symptoms. It's turned up occasionally since then during crashes. Are you equipped to just wait it out? Sleep as much as you need, keep hydrated and well-fed (stock up on ready meals if need be), that sort of thing?
  13. SOC

    SOC Moderator and Senior Member

    Messages:
    5,289
    Likes:
    6,276
    USA
    I have to sleep very long hours if I overdo or if I get an infection/reactivation. I've learned to just give in, stay in bed, and sleep as much as my body wants. My family calls it Massive Rest Mode. I only get out of bed to go to the bathroom; the family has to take care of everything else. Eat and sleep is about all I do during Massive Rest Mode. It's the same as when I had mono.

    For me, the worst of it (sleeping 15-20 hrs a day) only lasts a couple of days if I do Massive Rest, although sometimes I have to spend another few days (up to 2 weeks) mostly in bed doing nothing even if I don't sleep the whole time. My husband becomes the gate-guard because I get impatient. He doesn't even let me (figuratively speaking) go downstairs until I'm sleeping 10 hours or less.

    If I don't give in and super-rest, it just drags on and on and on, so I've decided my body is trying to tell me something and I ought to take it seriously.
    Tito likes this.
  14. Ivana

    Ivana Senior Member

    Messages:
    112
    Likes:
    10
    Thankyou all for your replies. I did have bronchiti two weeks ago so maybe thats made me worse. The worst thing is that a basic blood test doesnt pick up on these things, so we never know what we have. The glands in my neck are sore so i'm wondering whats going on inside.

    Sushi, u mentioned to be wary of oxidant stess. Can the iV therapy do that?
    Best
    ivana
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,854
    Likes:
    5,691
    Albuquerque
    I think you have to watch for that with any oxygen therapy and IV hydrogen peroxide is basically an oxygen therapy.

    Sush
  16. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
    I slept a lot early in the disease, but when I hit that 5 to 6 year mark it completely flipped to fragmented sleep and no more than 3 hours asleep a night. Get up for 2 or 3 hours then nap for a couple of hours. Then it's bed time again and it starts all over again.
  17. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,432
    Likes:
    1,925
    London
    We used to call it "agressive rest therapy". In the first 10 years of ME I slept easily 10 hours every night and as much as I could during the day. When I tried to work I was in bed almost all the time when I wasn't at work. All weekend I would sleep and rest in bed. I lost so much time off work when I had an infection or the viral symptoms and was in bed though.

    My ME started with an acute viral onset and I was unconscious with a high fever. That type of viral "unconsciousness" sleeping stayed with me for years and years. My glands were up, my tonsils and throat swollen. Then my body temperature began to drop over the years and the burning acute fevers began to go. Also the very long sleeps.

    When the constant viral symptoms went down (and Valtrex & Imunovir) went down I had less of that extreme sleeping.

    The more time I spent horizontal though resting the more strength I have for when I am out of bed and the better thinking and functioning.
    Tito likes this.
  18. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,926
    Likes:
    4,882
    Sth Australia
    In the first years of the ME, my symptoms were very flu like and with severe hypersomina. When I crashed very very bad, I was only awake for less then half an hour per day (15-20 mins per day), that went on for many months, things go so bad that I couldnt stay awake.

    Once I slept for 3 days without waking up at all (I must of been very dehydrated as I didnt even wake to pee during that time or drink.. I wasnt drinking much as everything was too hard to do.. too hard to lift a cup.. too tired and exhausted to even care about it). I can honestly say this could of killed me and I see myself lucky to still be alive today coming throu that.

    Take care... sounds like you are in a bit of a crash and it could take many weeks or even months to get out from. Trying to stay awake when your body needs to sleep may make things much worst. The sleep your body is wanting to do and needing.. may well by a very protective thing.

    Stop pushing yourself and pay heed to what your body right now is saying.

    If things are making you too severe with the crashes, you may need to even cut back on your doctors appointments and ER visits as those of us who get that bad.. even those things can put us back a very very long way if our state is too bad to be attending them. Really look after yourself or you'll end up having a further way to come back from.

    As someone else suggested.. now is the time for some aggressive rest therapy.. to try to get back to where you were. Think of all that sleep as being therapy.

    Oxygen therapy may not be good unless your levels are truely showing up low.. Dr Cheney talks about oxygen toxicity in his ME patients. At the moment the very safest thing you could do for yourself is probably rest till you improve some.
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,926
    Likes:
    4,882
    Sth Australia
    The sleeping issue for someone with hypersomina is as bad as having insomina.. .. she'd still be tired with no energy... she's not at all lucky for sleeping a lot and even after sleeping 15hrs, she actually may be feeling even more tired then you do.
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,926
    Likes:
    4,882
    Sth Australia
    Ivana.. I forgot to add to my post. When I was like that.. my glucose also went into quite bad hypoglycemia.. that is something you may want to get checked next time you see a doctor. (I didnt know that till years later when I got a copy of my medical notes but the doctor just hadnt bothered to tell me along with not bothering to tell me of the other abnormalities too.

    If you dont have them.. get your medical test results some time to check things.. you cant always trust that you will be told.

See more popular forum discussions.

Share This Page