Discussion in 'Fibromyalgia Main Forum' started by petsrme, Aug 6, 2005.

  1. petsrme

    petsrme Member

    Hi everyone! This is Sherrieb. I need to ask you a favor. I talked with my mom tonight and ended up crying and making her feel like a dog. She asked me why I didn't see her often or call her. I live behind her and we do see each other about once a week. We used to see each other almost everyday before I got sick. I told her that she makes me feel like she doesn't like who I have become and she acts like I am a failure as a parent. She got a little defensive and I backed off. She said that she doesn't think of me as a failure, she just thinks I don't try to get better as hard as I could. She doesn't realize that just her saying that alienates me. She also said she couldn't stand the way I slept during the day and stayed up at night. She said that just doesn't make sense. I told her that I couldn't explain it, but I just do better doing it that way. It has gotten worse, I admit that. I do go to bed later than ever and sleep later than ever. I guess I have adjusted myself to that. I have always been a night person though.

    Before I got sick I went to bed at about 12 am or 1 and would get up as needed for work. After I got sick I started going to bed and lying there for hours trying to sleep. I would finally fall asleep and once asleep I would sleep for hours into the day. Usually about 2 pm. I finally started going to bed later and would fall asleep easier. I find that I sleep much better when my husband gets up. I sleep great during the day except for the pesky phone ringing. I don't take any sleep aids. I have tried zanaflex and flexril but they didn't help. I recently tried zanaflex again and it did make me sleepy and high. I might try it at bedtime again to see if it works.

    My help from you guys is could you help me explain to my mother and family why some people just sleep during the day. I told her tonight that a lot of people who have fibro and lupus that I have talked to do the same thing I do. She said, "Don't you think maybe the way you sleep during the day might have made you sick?" I find this preposterous, but didn't tell her that. I just said no. I don't think for a minute that my sleeping late made me sick. I was not sleeping THAT late when I got sick. I was leading a normal life that kept me up during the day. The problem is that I did like to sleep late on my days off 11 am or 12 pm) and she hated that too. When I was sleeping until 10 am as a teen that got on her nerves too.

    Could you tell your stories about sleeping during day and staying up at night? Please just tell why you do it and what you think your reason is. My reasons are that I am sleeping alone during the day and that it takes me awhile to go to sleep. I also like being up at night. I have more energy. When I get up early, even if I have had 8 hours of sleep, I feel like I have flu symptoms. I feel absolutely terrible after about two hours of being up. Mom said this is because I have ruined my bodyclock. Thank you all for any help you give. Please just help me explain this to people why we do what we do.
  2. teene

    teene New Member

    Some times i go to bed at 10:00 and by 2am i wake becaues of pain, just being uncomfterbul An some nights i can sleep
    strigh threw, dontunderstand it, I nap in the morning a cupple hours after i wake sounds stringe but i sleep better and feel more rested I have arthertis,FM, just had spinal fusen last 2 disks gone took bone grafts from my
    hip and even with the pain meds i still dont sleep well at night. its hard to get family members to understand so gather info in books on the internet its out there good luck to you sherrieb god bless teene
    [This Message was Edited on 08/07/2005]
  3. 69mach1

    69mach1 New Member

    hi there,
    well tell your mother you can't control what your body is telling you to do. i used to be the first one up, crack of dawn then i fell ill w/fibro and vairous other things and am only 40 yrs. i have had a friend tell me if she was me she would've shot herself by now. she is 67 years old, so she gets about 5 hrs and his fine with taht. i only could imagine getting 5 hours. she understands that i can't sleep very well and that is w/meds and sleeping pill. which they say take on every 4th day so if i'm lucky i get some sleep. i've had to get up take my son to school when i had no business driving him. i've had to go to dr's appts w/ any sleep for days, just an accident waiting to happen. so tell ou mother would you rather that you had an accident with her grandaughter or getting some rest when her body allows it. you really owe her no explanation other then i'm sorry i have this dreadful illness more than she could even imagine. and also i have no family in the state of california, my are all in michigan. so tell her she's lucky she has the opportunity to even see her on a weekly basis. it would be just phone or email contact if her your job or your husband's job was relocated. so she wouldn't be able to see her precious grandaughter nearly as much. ileft the state of michigan in 1987 for my husband at the time was in the uscg, we didn't have a choice to live in our parents back yards, quite frankly i'm glad. you just tell mom to come to the dr's w/you or go to the library and check out a book and let you know if she's found the cure and pass it on to everyone else. i just do what i can and that's all you can do. and if i understand you bio, are you still applying for ssdi? keeping trudging it will happen some year.
    best of luck w/mom
  4. smiffy79

    smiffy79 New Member

    i sleep better during the day than at night-i also find i can get more done at night-midnight vacuming to alanis morriset is very pleasurable lol
    but i have two kids so i sleep (not at all well) at night and in the afternoon i crash--soundly.

    i cant explain it but its just the way we are,i have issues w/my mum too,its just its hard to understand what you cant see.

    you yhavent ruined your body clock,actually you will do it good by listening to what your body tells you as apposed what is considered 'the norm'

    we all look and feel like crap when we wake up and thats due to the fact we dont get alpha sleep and so we dont repair and get refreshed.body clock my ar@e.

    the leaflet named 'fibromyalgia syndrome' by fibromyalgia association uk may help you out,it will only list the symptoms you will have to fill it in for her as to what its really like.

    www.fibromyalgia-associationuk.org or


    goodluck sweety

  5. gravitychallenged

    gravitychallenged New Member

    Hi Pets,

    I also sleep during the day. Sometimes it is because I haven't fallen asleep until 5:00 or 6:00 in the miring and then I'll get about 4-5 hours when I finally do fall asleep. At other times, I sleep during th day because I need several naps in order to function half way decently during the rest of the day. If I don't sleep for at least an hour or so three to four times each day, I get so overtired that I get shaky, my thinking gets clouded and confused and I can't function very well at all.

    It might be helpful in trying to explain thing to your Mom if you just print out all the replies you're getting here so that she can see that you are not the only one who does this and that many people with fibro/CFS sleep during the day. It sort of comes with the territory. You might also want to take her along with you on your next doctor's appointment so that the doctor can explain to her about how disregulated our sleep patterns are and that it is not a question of will power but a symptom of the disease itself.

    I hope you start feeling better soon and you are able to work thiings out with your Mom. I'm sure that the added stress is makiing things a lot worse for you right now.


    LEFTYGG Member

    I keep promising myself i wont stay up but every night it happens im up until 4am playing on the computer

    then i sleep till 10 or 11 my mother lives next to me too she doesnt say anything but im sure shes thinking im a lazy bum. i feel guilty cause i dont visit her but 1 a week i call her everyday. i really dont feel like doing much

    i havent left house in many days everyone gets disgusted

    with me my husband offered to take me to casino movie anywhere and i just didnt want to make the effort.

    i guess we have to be happy and comfotable with how we choose to live.
  7. Muddieanne

    Muddieanne New Member

    Oh, this is such a hot topic for me! Family criticizes me for sleeping during the day. I live alone,so how am I bothering anyone? They refuse to understand that I feel better sleeping in the daytime.

    I go to sleep at 6 or 7am& it suits me.Any appointments I have to make are for late in the day.

    I have always been a night owl. When I worked it was horrible for me to get up at 6:30a.m.

    This way works for me & I don't have the stress of having to get up early. The pain we have is bad enough. Why do we have to explain ourselves to anyone?

    I am old enough to do things my own way. To put it bluntly others should mind their own business. Maybe they do things that don't sound "normal" to me. Oh, I forgot these are the people who always do things "the right way".

  8. ilovecats94

    ilovecats94 New Member

    Hi Petsrme,
    I went to bed at 10 PM last night and slept all the way through until about 9:30 AM, when I had to get up to use the bathroom.

    Got back in bed and was sleeping, then up to the bathroom, and back to sleep. I didn't get up until 12:15 PM. I just need about 14 hours of sleep and I don't know why. I do feel better from my FMS if I can get that much sleep.

    Sometimes, I'll even nap at night from 8 to 10, then go to bed and still sleep for the 14 hours, so that makes 16 hours a day.

    Don't ask me what I do with my free time... I'm either taking a bath, washing my hair, doing laundry and that is usually it.

    Actually on my free time I'm usually on the computer. I do watch TV at night and lately have been trying not to nap after dinner. Meds I take after dinner make me tired, but I need them.

    I'd like to stay up until 1 AM and sleep until 3 PM, but that is just not realistic for me.

    I get up and after I have washed up, I watch the tape of my soap from the day before. I have to do this because the show comes on at 2 PM. Other than that, I'd just sleep later on, but I feel guilty.

    So on Tuesday through Friday, I need to get up about 11:30 to 11:45 AM.

    The only time I get up earlier is when my cleaning girl is supposed to come every other week and then I get up around 10:30, but I feel badly all day from that.

    You can copy my post and give it to anyone you like.

    I've been on this sleeping schedule for about 3 to 5 years now. If I could get up at 8 AM and feel good all day, I would, but I can't.

    I schedule all of my appointments for the afternoon, as late as I can.

  9. ksp56

    ksp56 Member

    This has been on my mind since I woke up, at 10:30 a.m.!

    I am trying to adust, both physically and emotionally, to the fact that my sleeping is not in my control. Sometimes I feel guilty.

    My sleep pattern changes often. Some days, I am up at 8:00 a.m but, that is very rare. Some nights I don't sleep at all and then try to get some rest mid-morning. There are nights I will fall asleep at 10 p.m., which is very early for me. Those nights are infrequent. I still sleep until 10 a.m or so.

    I rarely can sleep during the day, even if I am exhausted, BUT,I still need to lay down to rest. Then again, I have been known to sleep 3 to six hours in the afternoon.

    We seem to have a crazy time clock. People need to understand this. It isn't what I would CHOOSE. It's just how it IS! My DH seems to be the only one who truly understands. I don't talk with my Mom about it even though we are very close. It just doesn't go well. Quite frankly, it is HER problem, not mine.

    In my perfect 'new' world, I would stay up most of the night and sleep until early afternoon. I also try and schedule my appointment's mid-afternoon if I can. There are days when I have to be up much earlier. On those days I come home and collapse.

    Family doesn't have to understand this DD, if they don't want to. They do need to keep their comments to themselves or risk being alienated even more by their loved one who deals with this daily.

    Obviously we aren't hypochondriacs. Who would choose this? I don't flaunt it, because I don't want the negative attention. We HAVE to deal with this. How nice if our loved one's could do the same.

    Good topic!


  10. Francey54

    Francey54 New Member

    I can't believe that so many of us have this same sleep problem. I knew that Fibro affects sleep but I had no idea that just as I you all fall asleep very late too. I can't dose off until 3-4:00a.m, wake up constantly because of the pain and irritable bladder syndrome. I get up around 1:00pm sometimes 2:00 p.m.

    Pets, maybe you should show your mom our posts, This way she can read for herself how all of us are in the same boat as you.

    Good luck hon


  11. CFIDSNicole

    CFIDSNicole New Member

    I read this post earlier today, and have been thinking about how to respond. I am in a similar sleeping pattern, and my parents think that anyone who sleeps during the day or sleeps past 6 is wasting time, so I can relate.

    Before I got sick, I was an early riser--6 or 7, and I loved getting up early--I felt like I got so much done. I went to bed between 10 and 11 or so.

    Now that I'm sick, I find that usually I cannot fall asleep until after 1 a.m. Most of the time, I am up until after 2 a.m. simply because my body is not tired then (fatigued yes, sleepy, no).

    I usually wake up between 9 a.m. and 10:30 a.m. Then, around 2 p.m. I suddenly get very very sleepy (in addition to the normal fatigue) and most days I go to bed and sleep until between 4 and 5 or 5:30.

    Lately, I have been sleeping during the day and going to bed a bit earlier--around midnight.

    As someone else mentioned, I have a very brief period of time where I am sleepy and if I do not obey that urge to sleep, I may not sleep well for a very long time. Some nights, I will suddenly get very sleepy around 10:30 or 11, and if I go to bed immediately, I can get to sleep, and I usually sleep until 8 or 9.

    My GP hates my sleeping schedule she said I have poor sleep hygiene, and I tried to explain to her that it isn't exactly my idea of a great sleeping schedule either, but it is what my body demands. I can't help it. I think my circadian rhythm (or whatever) has gotten screwed up since I have been sick. No matter how much I try to change it, I can't.

    Also, I find that if I skip my naps for whatever reason, I sleep a lot worse at night--very fitful sleeping, lots of waking up, and sometimes it gets me into a period of insomnia where I sleep very little no matter how tired I am.

    I think we each have to find what works for us and deal with it.

    Also, I really feel that I sleep much better during my naps during the day than I do at night. Very few vivid dreams, very little waking up, and I feel like I kind of actually slept.

    My mom doesn't get it and doesn't like it, but she lives far enough away that she doesn't know much about my schedule, and if she ever tries to "suggest" I change, I just ignore her. She doesn't live in my body, and she doesn't know what is best for me and my body.

    I completely disagree that your sleeping schedule is making you more ill or made you ill in the first place. There is no research, as far as I know, that even suggests this is remotely true. There is a lot of research about disturbed and changing body rhythms in people with CFIDS, though, and FMS.

    Take care,
  12. mtnfla

    mtnfla New Member

    I use to visit with my mother twice a week we live an hour apart and I always went to visit on my days off from work,but over the past several months I find it harder to do cause all I seem to do is sleep late in the day or most of the day away.I see her about 2-3 times a month now and when she calls em it seems like I'm always sleeping(I guess that is because that all I seem to do anymore) Work wiped me out,I post to work 5 days a week and I'm lucky to get 3 to 4 days in a good week..Last week was a bad week I managed 1 day.I plan a whole day just visiting first I started with my Dad and Niece and than over to my Mom was going to make a day of it,got up early and got dressed up(very unusual for me these days). While shopping at the commonsary with my Dad and Niece out of the blue during a conversation(we were joking around and having a good time)I grabbed the top of my head and excused myself to the bath room of course Dad sent Niece with me and I didn't think I was going to be able to walk much further(you see my Dad has a bad heart and his healthisn't that good) and I didn't want him to freak out by what was going on.I was freaking out enough for the both of us,cause this was something new to me and I didn't know what or how to act.I told me niece that I couldn't get back up of the bench and walk casue the pain was so intense and while she was gone to get Dad the pain just kept getting worse so by the time(short ) they got back Rescue was pulling up and I ended up in the ER til almost midnight that night having test(except an MRI,which I think should have been done)and a spinal tap which took 4 tries before they could get any fluid to test.I felt totally exhausted and worn out and the next morning she called and seemed to be upset that I wasn't come out later that day,or the following day which I already had an outpatient procedure schedule to have an cervical epidural injection done in my neck(2nd of set of 3)..Needless to say I didn't make it over this weekend either,cause my car was stilla t my Dad since the Wed episode and no one answered when I called her house today,so either she was away from the house or screening her calls.I guess it hard on her but I don't think she realizes how hard or stressful it is for me when people are upset cause I'm not the way I use to meand the only good thing about that is I have lost 60 lbs in a year without trying,but to be honest I rather be back to my old self and have kept the weight instead of going through what I'm going through..I get stressed very easily these day,and sometime it just takes someone saying almost anything and it sets me off..I hate being like this and it seems like the only time I can escape from it is when I'm sleeping,so I guess I do sleep alot.I can usually sleep from the time I get off work til it's time to go back with only a few interuptions like cooking (microwave most of the time) and showering..So you are not alone when it comes to sleeping during the day..Take care andhope you had a nice weekend..Marianne
  13. petsrme

    petsrme Member

    Thank you all so much for all of your posts. This is exactly what I wanted and needed. I am going to print all of them and show them to my family. It seems we do all have so much in common. Marianne, I am so sorry you are having it so bad. I hope your mom will understand that you weren't able to come and see her. She must not realize how sick you were.

    Thank you my friends!!
  14. Sue50

    Sue50 New Member

    too, don't feel bad about it, we all do what we need to do to ease the pain. Maybe you should invite her to read this message board, education about FM might help her??
  15. mtnfla

    mtnfla New Member

    I rarely find anyone with the same spelling as my name and to top it off a day sleeper too..Just wanted to say hi to you..take care Marianne (fla)
  16. snuggle

    snuggle New Member

    I agree with Nicole. If I do not get a nap or 2. I am unable to sleep at nite. I told my doctor and she said it is because I am sleeping during the day. So I tried it her way. I had insomnia for 2 nites. It just isn't worth it. If for some reason, like Dr's appts. I can't get a nap in, I am sure to be up at 2 am to 4 am, like tonite. I missed my afternoon nap yesterday. My sleep schedule seems to be shifting again. Sleep deprivation is no fun.

    Good luck, I am back to bed.
  17. cajunv2001

    cajunv2001 New Member

    sleep when you feel is best,you are a grown woman who need not Explain it more than once to any one,please yourself,no one else.God gave this to you as we all have health burdens as humans,and you sound like you have found a way to cope.sorry she can't see it that way,we do!
  18. CFIDSNicole

    CFIDSNicole New Member


    I think there are others who might be interested in reading this, too.

  19. petsrme

    petsrme Member

    Ohhh Marianne (Doxy) you are so sweet!! Thank you so much for taking the time to write that wonderful letter. I can't believe I have such wonderful friends. You are a treasure. Love you sweetie!

    Thank you all for your responses. You are so right. We are adults and we shouldn't have to explain more than once. I will print these out and I am going to promise myself that this is the only time I will ever try to explain it again to outsiders. I don't mind explaining it here to people who are like me, but others will only get one explanation.

    Love to all of you!
  20. petsrme

    petsrme Member

    hi dennis, it sounds like you are sleeping at about the same times as me. Thank you for sharing. It is so good to know I am not the only one. It seems we aren't alone.

    I take paxil, HCT, norvasc, wellbutrin, a couple of ibs meds, plaquinil, occasional flexril and occasional zanaflex and several supplements.