Discussion in 'Fibromyalgia Main Forum' started by srollins, Mar 26, 2003.

  1. srollins

    srollins New Member

    I have been spending much too much time trying to sleep and I want to know if this is normal, example:I went to bed on tuesday night at 11:eek:o I did not get up until 1:20pm on Wednesday At 6:00pm I laid down on the sofa and fell asleep til 9:00Pm,went to bed at 11:00pm and then had to force myself up this morning at 6;10. This is typi
    cal of me most of the tim. I really wouldn't care so much if I felt like a human when I was awake but that is not the case.Maybe I am just lazy! I can understand how a persons spouse could get upset.
    I just feel like I am sleeping my life away and I still feel like S***T because it's not good sleep. I am totally beside myself over this.I have been in this flare since the middle of Nov. of last year,it just won't pass. This is the worse flare I have had since 1979.
    I am not sure what my purpose for being here is.Must be those 2 little Grandchildren that are the apples of my eyes.
    When my 6 year old granddaughter tells me " Grandma you look like a tween in your bathrobe" (tween means queen when you are 6) and I have'nt had it off in two day or have'nt combed my hair all day. Then I think to myself "I can keep going". I will keep going!!!
    Anyway I am just really upset over all this down time and this flare,I think I just got caught up in the moment and needed to vent.It helps just to be able to whine to someone without being judged or ask too many questions that you have already answered to deaf ears. Well I can see today is going to be one of those days ,I need to shut up now ... Shirley
    ps I bet this makes no sense, does it?
  2. EllenComstock

    EllenComstock New Member

    What you say makes sense to me. I, too (and I think everyone else here) has a problem getting enough sleep. If I can get three or four good nights' sleep a week, I consider myself lucky. But, of course, those of us with FM don't get enough of the level 4 deep sleep which is necessary for healing and resting. Without it, we can sleep for what would be considered enough sleep time, but we still wake up feeling exhausted.

    You are not lazy! That is a common misconception of this disease. Is your spouse saying this? My husband had a hard time understanding this disease at first and we are both still learning about it. He has seen me go from an active, full-of-life person to someone who has definitely slowed down.

    I'm feeling a little down myself today I've had a couple of bad nights and here I am at work trying to look bright and intelligent. Fortunately I have a pretty easy job with not a lot of responsibility. But I forced myself to get dressed (wore something today that I especially like to bring up my spirits) and am determined to make the best of it. Tonight when I get home, I will watch TV and spend time with the hubby.

    It's good that you have your grandchildren. We all need to have a purpose and something that keeps us getting out of bed in the morning.

    Try to hang in there. I hope it helps that you are not alone in this.

  3. nct

    nct New Member

    You are certainly not alone in this.
    Non-refreshing sleep is also symptomatic of CFS. Could you have that as well? That's my claim to fame. :(

    I'm learning more myself, and starting to see that even though, most of the time, when I slept, it was allnight through, 11:00pm to 6:00am, 7 hours isn't really enough for someone with CFS. And, it isn't really good sleep, because I wouldn't wake up refreshed at all. I never noticed the difference until I got sick.

    I'm now making a conscious effort to get more, to be in bed no later than 10:00pm.

    I mean, I was on vacation yesterday morning-had planned to get a good 8 hours of sleep, had the timeset aside to do that. But woke up at 7:30 instead of 9:00, then couldn't go back to sleep. I only had 6 hours, and felt droopy all day. And last night, when I should have wanted to sleep, it was nearly 11:00 again before I crashed.
    Urgh. My sleep center is all whacked out.

    At the Cincy conference last weekend, Dr. Teitelbaum said, more than once, "Do whatever you have to do to get 8-10 hours of sleep a night. Period. Do whatever you have to do to get 8-10 hours of sleep a night.!"
    He was quite insistent. Most folks in the audience just looked around and laughed.
    But, I have since ordered his revitalizing sleep product, and will try to do that very thing.

    I'm very sleepy today as well. If it weren't for my supplements and homeopathic EPBARREX formula, I don't know if I could even function.

    Stay tough everyone!

  4. schnoodle

    schnoodle New Member

    What is this sleep product you talk about? How can I get information?
  5. judywhit

    judywhit New Member

    mention sleeping pills as a means to sleep. You said no matter what! I have come to the conclusion that if I must take an ambein every night so be it! I am getting 5-6 hrs with the pill. And it is a deep sleep. Without if I get nothing but coma like seizures.
    thanks for the info.
  6. Bellesmom

    Bellesmom New Member

    I don't know how old you are but I just reached 62 and my robe is worn out and I can't get a new one right now.

    I seldom get dressed because clothing irritates some parts of my body so much and I spend most of the day in bed so it's uncomfortable being dressed and in bed all the time. I am in bed because I cannot get out from the fatigue I have.

    When my grandchildren see me at my house I am usually in my nightgown and robe. They seem to have gotten used to it. I seldom leave house anymore so don't get dressed unless absolutely necesssary.

    I have dropped off the radar of life but find a lot of help on this website I will tell you.

    As far as sleep goes, I know I say this a lot but someone on this site suggested Benadryl for sleep and it does help me actually sleep but I am always completely fatigued. There are a lot of posts today concerning sleep for some reason.

    Anyway - lots of different points of view here and maybe someone will say something that can actually encourage or help you. I just wanted to say I know what you mean and someone who doesn't suffer from what you "have" is never going to quite understand your situation no matter how hard they try.

    I have been "sick" for going on 3 years and have never gotten better so I do realize what you're going thru to a great degree. Hang in there - I know I feel a teeny bit better when I'm able to get the shower over with and also I am looking forward to spring. In the Pacific Northwest (I live outside Tacoma, WA) we don't get a whole lot of nice weather but it seems to perk me up a bit.

  7. srollins

    srollins New Member

    Well I just got up from another marthon nap. It is almost 9:30pm and I have been on the sofa since 3:00 this afternoon. What a waste of time. I am so disgusted with myself.My husband is wonderful about this DD.I don't think I would be so tolerant if it was the other way around.No Hubby is not the problem,the problem is me.I just can't accept this.Even after all these years I just can't accept it Every day it's something else. I am glad that I can come here to vent, it helps to put my grief in black and white. Thanks to all that have responded. I am going back to my safe place on the sofa now.

    (((())))) Shirley
  8. coyote

    coyote New Member

    I haven't had a decent night's sleep in over a month, even with an increase in meds. It just isn't working. Can't go to sleep, can't stay asleep. As a result of poor sleep, on the weekends I "sleep" (if you can call it that) about 13 or 14 hours. Not much of the day is left when you get up at 2PM. I cannot face work tomorrow, and feel guilty about it. Feel like a woos. I'm sure my boss will find fault with me. In the past month, I've had two accidents, one in the car, and I fell at work. A friend passed away. The payroll office just discovered that they've been paying me too much, and will now be deleting money out of my next 12 paychecks to get their money back. And, I got called up on the carpet by a new teacher who's still wet behind the ears. She really got the best of me, partly because of the difficulty I have articulating my thoughts. Arghhhhhhhhh.
    Went to acupuncture today, and will see if that improves the sleep problem. Sometimes he can work miracles, and I feel like I need one also.
  9. JLH

    JLH New Member

    Maybe your sleep patterns are the way the are because you're not on the right sleep med for you; or maybe you are taking too much of what you are on.

    I would discuss it with your doctor and see what he suggests.

    I know some of the sleep meds the dr. has tried me on have made me sleep until noon the next day, then nap all afternoon, and still sleep at night. That's no life!

    My rheumy told me that fibro patients are more sensitive to antidepressants, etc., that are used for sleep aids.

    I know I am sensitive the Phenergan (an anti-nausea med). I can take one pill and sleep on and off all day for 3 days!

    I know I hate to sleep all day, even if I'm feeling bad, it makes me feel like I have completely wasted the entire day!