question to those who've gotten alot better

Discussion in 'Fibromyalgia Main Forum' started by Chilene, Feb 5, 2007.

  1. Chilene

    Chilene New Member

    i have always wondered (over the 12 years of cfs/fibro): will i get better, over time, if i get up each day (dragggggging self) after 8 or 9 hours of sleep (and accomplish a tad)... or should i just keep on sleeping?

    and i don't even know how long that would REALLY be if i kept on sleeping! since i haven't been working at all lately, i sleep and drag myself out of bed after about 9 or 10 hours. i have allowed myself to sleep 11-13 hours, but never longer... afraid my schedule would get even worse off. plus i live alone (noone to wake me; i just shut off alarms over and over).

    when i was working, both full time and eventually very part-time... i was always dragging and sicker... but less depressed, as i was seeing people and involved in life and up much earlier. not working again, i can't get to bed at night and am up until 3 or 3:30a.m.! then i sleep til 12 or 12:30pm. very depressing schedule. but i can't break it.

    on the other hand, i don't ususally feel quite as bad as i used to on my current 9 or 10 hours of sleep vs. 7 or 8 when i was working.

    sometimes i wonder if i would heal more if i just slept like 15 or 20 or 30 hours? i once asked a doc about this and he said, you might feel better, but you'd probably get more depressed. but if someone could say that tons of sleeping really made a difference over time, i'd do it!

    any thoughts/experiences on this?

    fibrohugs!;)
    helene
  2. Slayadragon

    Slayadragon New Member

    Most definitely, the more sleep I can get, the better I feel.

    it can't be "sleeping pill sleep," though. Real sleep only.

    But definitely I don't stop myself from sleeping. I use an alarm clock only under the most dire circumstances. I do not have a phone ring anywhere near my bedroom, and use a loud air purifier so that other noises won't wake me up. I have black-out blinds in my bedroom. I take naps when I can.

    I have manic-depression, and so if anybody would get depressed from too much sleep, it would be me. People who get depressed from too much sleep are, to my knowledge, people with mood disorders.

    But nope. I don't get depressed at all. More sleep ---> feeling much less depressed. Invariably.

    I use Klonopin or Xanax to help me sleep more deeply. It will not make me go to sleep if I am not already tired. But the sleep that I get is more deep. This means that I awaken more rested from it. I also am less likely to waken easily and then not be able to get back to sleep.

    I always get at least 9 hours of sleep. (Except in dire circumstances, again. This pushes me downhill very fast.) When I'm under stress or worn out, I sometimes get 12 or even more.

    FYI, I was functioning at about 60-70% before starting an antiviral. (This was as a result of a variety of things I have done to make myself better, including making sleep a top priority. f I abandoned all of them, I would have been at about 30%.)

    I currently am ranging between 20-40%, but that is because I am herxing up a storm on Famvir. If I weren't getting as much sleep as I could now, I'd be doing much worse.

    As for your sleep schedule.....here are two strategies to consider.

    1) Melatonin. This alters the circadian rhythm. People use it frequently for jet lag, for instance. It is taken shortly before the time one wants to go to sleep. This is a hormone, and so buying a good brand is important. Traditionally this is sold in 3 mg capsules or tablets, but some people get good results on much less (e.g. .5 mg.).

    2) Seriphos. Many people have high cortisol at night and low cortisol in the morning. If you feel much much more awake at night than early in the day, you may be one of them. Seriphos supposedly helps to lower evening cortisol, and thus to increase morning cortisol. it should be taken in late afternoon.

    If any of these things sound interesting to you, you should gather lots more information before trying, of course.

    Best, Lisa

    **

    Disclaimer:

    My intention in posting on this board is only to share my own experiences, provide observations about other people's experiences, and report comments offered by MD's and other medical professionals.

    If I seem to be offering medical advice of the sort that an MD should, this is unintentional. Please don't follow it.
  3. Chilene

    Chilene New Member

    lisa--

    so nice to "meet" you.

    it's encouraging to have read your bio and reply here, and to hear about your strength and experiences (by the way, we live very close to each other and got sick within a year of each other and are the same age)!

    when i mentioned that the doctor said that constantly sleeping might become depressing, he was referring to the fact that i would be isolating more (and i am single/live alone). i understand how that could have been misunderstood. (i currently am dating someone in las vegas--two and a half years of this craziness... and it's a double-edged sword: i never have to drag myself out when i'm tired--we talk everyday and email--on the other hand... not human contact... so ending that-- will make for some scary alone time).

    i would LOVE to take ANY vitamin, herb or even drug (though i'm pretty into the natural stuff). but i think i am one of the extreme cfs cases: i react/am allergic to EVERY substance (including stomach enzymes, aspirin, vitamins, vit. c, vit. e, zinc)... the substance will always begin working... then quickly, i will get a rash, my throat will begin tightening up, etc.. my goal is to somehow(!) find a way to desensitize (this has gotten worse in 12 years), so that i can even begin to add those things. food is a whole other sensitivity issue. there is really not ONE vitamin, herb, homeopathic remedy or drug that i don't react to!

    i have gotten a bit stronger since not working full (or moreso) part-time... but began to then have to fight a (new?) herpes outbreak monthly... and if not for that outbreak/fluishness each month... i'd be doing MUCH better than when i first got sick (no herpes then, that i knew of).

    oops, this was long and allover the place!

    i will see how sleeping even longer works for me!

    many thanks, lisa!;)
    helene




    [This Message was Edited on 02/05/2007]
  4. evol_or_revert

    evol_or_revert New Member

    Hey Helene

    I'm not very good at advice. but here are my own experiences.

    I took six weeks off from everything and slepted as much as I wanted night day whenever it was needed.

    I've been pretty lucky and as I'm still at school I can just sleep if I need to.

    I really do think it helped me and I still need a good sleep even these days.

    I would say I'm about %95 better now and hope to get to %100 by the end of the year

    good luck
  5. Chilene

    Chilene New Member

    nice to 'meet'you as well;)

    i read your bio and it sounds like you are making good progress. yea!;) sorry bout your horse, though.

    and yeah, as much as i love to work, i just hate calling in sick AGAIN; it's so stressful.

    many successes with school and more!

    i will keep sleeping!

    fibrohugs;)

    helene
  6. AnneTheresa

    AnneTheresa Member

    Your current sleep schedule is exactly like mine. I used to feel bad about sleeping so late in the day (that crazy work ethic kept telling me to get up at a decent hour and get some work done) but I've since convinced myself that it's okay to sleep/stay up whenever I like. After all, I don't work or have children to care for, so who cares if my sleep schedule is a bit odd.

    To answer your question, the more sleep I get, the better I feel. When I have a bad flare or feel worse than my usual bad, I always turn to extra sleep and (if I'm able to get it) I find it helps more than anything else.

    As for too much sleep leading to depression and isolation, I recognize this as a concern in my life. To counteract and offset the tendency to become depressed, I make sure I schedule activities 2-3 times per week to be sure I get out of the house. I usually schedule outings for 3 p.m. or later so that I can sleep late and still have lots of time to get dressed etc.

    My own activities include such things as visiting with a friend, walking through the mall, going to a doctor's appointment or for a massage therapy appointment or for a manicure, going to the movies or a play or a concert and if the weather's nice I'll go for a walk.

    God bless,
    Anne Theresa
  7. Chilene

    Chilene New Member

    nice to meet you, also!

    it's great to hear all this encouragement of sleep!

    i'm realizing that alot of it is this: because i live alone... if i just sleep and continue to be "happy" in some ways not exerting myself... i end of seeing no friends (a number of my friends don't have cars--it's chicago), and others aren't on my weird schedule or have their husbands or boyfriends... you name it... i can talk on the phone with them plenty, but between them being busy and me not being able to make very good advance plans... it's hard.

    i think i'd be quite happy if someone (like a boyfriend/husband, not so much a roommate after being without one for 14 years and the added fragility of cfs/fibro)... were to live with me... i think i'd feel quite content to lay around and sleep more if i had a human around. but instead i feel this force to go out and get human contact... even when i'm so wiped out.

    maybe i could just try this more sleep thing for awhile and see, though!

    thank you, anne theresa, for all your thoughts! you sound like a lovely person;)

    fibrohugs!
    helene
    [This Message was Edited on 02/06/2007]