Sleep cycle completely screwed up

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Dec 14, 2008.

  1. AuntTammie

    AuntTammie New Member

    My sleep cycle is getting more and more screwed up. I am currently falling asleep anywhere from 4 - 7 AM and waking up around 3 - 5 PM. I have tried everything....melatonin, tryptophan, sleeping meds, proper sleep hygiene (same time to bed, same time up, dark room, quiet, white noise, no caffeine, no alcohol, cool temps, getting up if not sleeping, etc), warm milk, warm baths, exercise early enough, etc, etc....I've also tried light therapy, stimulants, etc....nothing works.....anyone else deal with this? Any suggestions that I have not tried? I literally cannot function if I get up in the morning and I get really sick (nausea, vomiting, etc). This evil illness is bad enough w/o being on a completely different schedule than the rest of the world.
  2. heapsreal

    heapsreal New Member

    Know how you feel. Sometimes i think my body clock is set to go to sleep between 3-5am wake around 11am -1pm. I use to feel guilty about sleeping during the day but now i try to just go with it. Any sleep is better then none. and my sleep cycle changes all the time, usually cant sleep more then 4 hours at a time. and yes used all the sleep meds, they all work to varying degrees but not for ever. I usually alternate between a couple of them and use them sparringly, usually when i have to work day shifts starting at 7am i take a sleep med at 10pm and hope i get some sleep. yes Im a shift worker and work part time, but my sleep definately deteriorated when i got cfs. Sometimes cytokines produced by the immune system to help fight infections can be stimulating and give you the tired but wired feeling. Most cfsers are either the tired but wired types or cfs types that sleep 18plus hours a day

    My most relyable sleep med has been doxepine 20mg, and of late have found when i take lyrica with a sleep med my quality of sleep improves dramatically, but like i said earlier, nothing works for ever, why i use them irregularily.

    Good luck.

    ps, try periactin an antihistamine which is suppose to improve the quality of sleep
  3. meowee

    meowee New Member

    I have the exact same problem. I cannot fall asleep, even if I am worn out. I lay there until 6 or 7 am, then I drift off and sleep till 7 pm. I hate it.

    I am also having terrible itching, and that makes it difficult to sleep. I get this on occasion, and I think it maybe stress. I itch from head to toe and no antistamine, creams or anything can stop it.

    What a miserable existence.
  4. ladybugmandy

    ladybugmandy Member

    me2......this disease affects the hyothalamus. i think that regulates sleep cycle..?
  5. heapsreal

    heapsreal New Member

    Had a sleep study done, not alot of sleep for them to study but what sleep i did have was very shallow and no signs of apnea or rls
  6. wendysj

    wendysj New Member

    Aunt Tammie,

    My doctor assures me that she has seen lots of improvement in her patients sleep if they use the muscle relaxer Flexeril. She said, Ambian and others like it do not help you reach the 3rd and 4th sleep cycles. Flexeril does. I have been taking it for a month and have barely started noticing some difference in the quality of my sleep.

    I also have had some problems with my heart racing at night. My doctor said to take some Xanax for that... The combo of those two really do help me sleep.

    I hope you find something that works for you.

  7. gapsych

    gapsych New Member

    I have always been a night person but became worse with this DD. I hate waking up in the middle of the day.

    If our sleep cycle is out of whack, does that mean we get a higher level of cortisone when everyone is sleeping?

    I've always wondered if our bodies are telling us something. I did have a doctor tell me that it was not the end of the world if I sleep when my body is tired.

    But then I still tend to oversleep and realistically it is hard to live in a world where everyone has the opposite sleep cycle.

    Has anyone noticed that this tendency got much worse after stopping work when you do not have to get up? However, before I stopped working, I could not get up.

    It just seems that it is a vicious cycle.
    [This Message was Edited on 12/15/2008]
  8. deliarose

    deliarose New Member

    If you don't have bipolar, I would suggest taking sam-e and some GABA calm a couple of hours before you need to turn in.

    Sam-e helps the body convert serotonin to melatonin.. which is what tells your body it's time to sleep.

    I was on sleep meds for 7 years, 2 sleep studies, little or no stage 3 or 4 sleep... It turned around in 2 weeks after I started on Rich Van K's simplified protocol.. which includes sam-e, folate and B12.. hydroxy B12.

    I haven't need pharmaceuticals since then.

    (Sam-e is contraindicated for people with bipolar disorder.)
  9. aftermath

    aftermath New Member

    Impaired regulation of the sleep/wake cycle is one of the most common symptoms of this illness. "Day/Night Sleep Inversion" is very common in PWCs. I experience it big-time.

    I would probably be 60% functional if the world got up at 2PM and went to bed at 5AM.

    As others have posted, this is a neurological illness. It affects the brain's perception of a lot of things, including the sleep cycle.

    Certain supplements may be able to help a bit. Still, I had two sleep studies done, one of them with a guy who is arguably the #1 sleep doc in the world (Thorpy out of Montefiore) and both found no problems (I get good stage 3/4 sleep).

  10. Bunchy

    Bunchy New Member

    Tried light therapy, sleep scheduling (get so sick with this like another poster said) and even with sleep meds and Soma can't fall asleep til 3am and get up around midday.

    This is getting worse every year for me and I can't change it. It got significantly worse after a year when I had violent allergic reactions to viruses.

    The worst thing is if I need work done on my house I have to go stay with my parents because I can't get up early more than two days in a row. We haven't done anything to our house for ages as I am not well enough to stay with Mom and Dad and I can't cope with the getting up and the MCS because the workmen all wear strong washing powders and aftershaves.

    Luckily my house is pretty quiet so I just go with the disrupted sleep cycle - no other choice.

    Anyone feel extremely drugged too - like they have been under anaesthetic and haven't slept for a week when they wake up? That's horrible and every day for me.

    Hugs to all,

    Bunchy x
  11. AuntTammie

    AuntTammie New Member

    I appreciate all the responses...they give me some more things to look in to trying...and it's nice to know I'm not alone.

  12. lrning2cope

    lrning2cope New Member

    I have had this problem for years. I have sleep apnea and they call the sleep cycle problem a circadian rhythm disorder. Our bodies don't know night from day.

    I had started working my sleep schedule around to "normal" and then I had an operation and I am back to going to bed between 2 and 5 am and getting up between 2 and 4 in the afternoon.

    This just drives me crazy because I already feel out of touch with the rest of the world and this just makes me even more of a hermit.

    I wish I had advice to give , but I struggle with this one myself.

    [This Message was Edited on 12/15/2008]
    [This Message was Edited on 12/15/2008]
  13. jinlee

    jinlee Member

    I wish I could help with your sleep dilemma but can't help myself.

    I had a sleep study and need CPAP. My sleep architecture they say is nonexistent. I sleep 97% in stage 2 sleep, and 3% in stage 1 and out of six hours of sleep, 7 minutes were in REM. I have no stage 3,4, and almost nonexistent REM. No sleep doc seems to know how to fix me.

    The best I can do is go to bed at 10 p.m. each evening, take 2 mg clonazepam, 4 mg Zanaflex, 2 tramadol, 1 tylenol. I sleep for 2 to 3 hours. Melatonin used to help but then started to make me depressed so had to stop that.

    My husband leaves for work at 3 am. so after that I catch my sleep during the day whenever I can. It really messes up your life but one has to do what one has to do. Luckily I have no children at home.

    I have tried staying awake and not napping but that does no good.

    If I am lucky and sleep for six hours straight, I still feel exhausted. I used to wake up from what little sleep I did get feeling so very ill, had to lay in bed and not move for several hours. Since using CPAP, I no longer wake up feeling sick and that is very nice!

    So, as I said, I am of no help for your sleep, just know you are not alone.

  14. Asatrump

    Asatrump New Member

    For over 40 years I have had both types of insomnia, hard to fall asleep and hard to stay asleep.

    At one point I was really, really sick, losing weight and miserable. The doctor diagnosed me as severely sleep deprived and if you google sleep deprivation you will find a long list of things that perhaps you too will have. From what I read it would take months for my body to recuperate.

    I have prescriptions for ambien, valium and soma. My doctor would not approve, but I know my body and what I need. So I take less drugs during the day, but take a knock out bunch at bedtime. I take ambien, valium and sometimes if I still don't sleep , will get up and take 350 mg. soma.

    Subliminal things also keep you awake...... like knowing you have an appointment or job etc. the following day.

    I found it interesting to note I can still function during the night even with all those meds on board. 45 minutes into sleep the phone rang, my son with a dog problem. He described the situation, I instructed him do not call the emergency vet, to give the dog two benedryl and go to bed. insert grin.... evidently I was not exactly pleasant, but I was right on with the problem/solution even in my stupor.

  15. alyssalyn

    alyssalyn New Member

    Five years ago I was in the same boat with an exactly reversed sleep rhythm and I have been able to correct it. I am working and productive now but have gone through many things with chronic fatigue syndrome.

    For me (not saying that everyone has the same issue though) it was due to endocrine malfunction, specifically of the endocrine issues I experienced, adrenal insufficiency/adrenal fatigue. When the adrenal glands are fatigued, the sleep rhythms can get backwards. You can find out more about these on the Internet and from the book by James Wilson: "Adrenal Fatigue: The 21st Century Stress Syndrome." For this condition I have used natural glandular supplements prescribed by my naturopathic doctor which restored the adrenal gland function. The company that manufactures them is Standard Process but the glandulars are harder to find without talking to a natural medical professional (it can be done though). You can get adrenal glandulars at health food stores but the one that I tried didn't do much. There are also herbs which boost adrenal function ... something else you could look up on the Internet.

    Now, often times in Chronic Fatigue Syndrome, the HPA Axis - the Hypothalamus - Pituitary - Adrenal Axis -- is messed up. The Hypothalamus is the master controller for all the endocrine glands. I did find that the S.P. glandular for Hypothalamus was effective 4 years ago for restoring natural sleep rhythms if I took it and then only went to bed when I was tired. It backed up the times at which I was yawning/sleepy. I found that no matter what I did, I could not fall asleep at 10 pm, the time my doctor said to go to bed. She suggested relaxation music and melatonin, and neither of these items worked. There is a reason behind this, and it has to do with the temperature cycles. In a normal person who is healthy, their highest body temperature of the day should be at 7 pm. Two hours later, the body will drop to a low, and this induces yawning. At the time that yawning is experienced, the body is preparing for sleep and would be able to sleep. I found repeatedly that I could sleep if I waited till I was yawning, even if that point was 6 am. I found repeatedly that I could sleep if I went to bed when not yawning. I had more fatigue the next day if I had shallow sleep from going to bed when not tired, than if I went to bed at 4 am and got only 4 hours sleep. During the period of my being basically housebound, my sleep schedule was about 4 am to 2 or 3 pm. I want you to know it IS possible to restore your sleep rhythm and do not give up.

    Now, what I have just found now, since Hypothalamus glandular did not work for me right now and my adrenals are fine, is that I have had a protein deficiency for probably 19 years. A manifestation of that is a disruption in the creation of serotonin and melatonin, which affects the body clock and also creates mood problems and pain among many other things. I have been using protein drinks from the health food store for a month and it took a 4 am bedtime back to a 11:30-12:00 bedtime (I had it backed up before with Hypothalamus glandular but had a reoccurence of CFS). The body needs the amino acids from protein for many things and protein deficiency is highly correlated to FM and CFS. When drugs are prescribed for serotonin, this is what they are trying to medicate: a protein deficiency: for serotonin is produced from protein. The melatonin didn't work that was prescribed in pill form for resetting my circadian rhythm, so I thought, well, where does it come from: the research said protein. It made my yawn time go earlier and earlier, removed 10 years of muscle pain, increased mood. I strongly recommend going to get some protein powder. I have been researching circadian rhythms, serotonin, melatonin, all day due to being snowbound in Washington state, and this is powerful to have figured this out finally!

  16. SusanEU

    SusanEU New Member

    Oh, boy, I could have written that post myself!

    Add to that a boyfriend who thinks that anyone who isn't up at the crack of dawn is some sort of lazy slacker, no matter how I try and explain it to him.

    Sigh...just remembered how much I loved living alone....
  17. alyssalyn

    alyssalyn New Member

    The body temperature drops when we are tired and rises when we are to wake. This is a natural part of the circadian rhythm. In someone who is healthy, the highest temp of the day should be at 7 pm and it should decline after that and hit a low 2 hours later. At its low, you start yawning and are able to sleep. People with messed up sleep may end up having the highest temp of the day be at midnight or 2 am, and then getting tired 2 hours later, wow, that is way late.

    However, if you feel noticeably colder, you may have some issue that you need to address with subnormal temperature (which could be a thyroid thing, an anemia thing, a dehydration thing, a Chinese medicine "Triple Burner"/Kidney Yang deficiency issue.... or something else.
  18. jmq

    jmq New Member

    I also cant fall asleep....even with Ambien....until 2 am....and find it VERY hard to wake up until 11am....sometimes as late as noon. I HATE it. I just went for a sleep study but have not heard the results. I will post if it is anything interesting.

  19. justdifferent

    justdifferent New Member

    I've also had "forward" sleep cycles. If I can sleep 4 am - noon, I feel a lot better than being forced into getting UP at 5 am as a single parent to a teen and a third-grader (as well as holding a full-time job). I've never been able to get to bed before midnight - not since I was a child. From 11 onwards -- after midnight.
  20. heapsreal

    heapsreal New Member

    if there was some way to clean our sleep medicine receptors so medication will work like it once did. stilnox/ambien worked well for me for 2 years, 2-3 days a week. I would be happy with that

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