Do you feel ok in morning, then bedridden by night?

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Jun 7, 2006.

  1. Michelle_NZ

    Michelle_NZ New Member

    Hi everyone

    I'm curious if anyone experiences the same or similar daily pattern that I do. I've had CFS for 2.5 years. and just dx with fibro too.

    In the last 3 months a new pattern has emerged:

    It doesnt matter what time I get up - whether its 8am or 11am, I always have 1 - 2 hours upon rising where I get some relief from my symptoms - they are mild and I feel that I can cope with them.

    Then it starts.. left sided numbnes, leg pain, nausea, severe headache, burning arms, facial pain (jaw, face, teeth),neck and back pain severe maliase (I feel poisoned), sore throat, exhaustion. Sometimes there are other CFS symptoms present too, but these ones I experience every day now.

    All these symptoms keep increasing in intensity... by 3pm I am feeling awful and am housebound.

    And it just continues to get worse until I go to bed. By bed time I am usually crying because of the pain and the frustration of it.

    And then it starts all over again the next day.

    Is this how it is for other people?

    Thanks everyone
  2. KMD90603

    KMD90603 New Member

    I have CFS and the course of my day is very much up and down. I wake up in the morning, and regardless of what time I wake up, I head straight for the couch. It takes me a couple of hours of laying on the couch before I'm able to begin functioning. Then, I'm okay for a couple of hours, and then by afternoon I start feeling absolutely sick. I've also noticed my fevers will be up and down all day, but the afternoon and evening is when it's the worst. Usually by that point it's up to between 99.5 to 100.0. So, I lay down again in the afternoon, in order to make it through the rest of the day. That's usually for an hour or two. Then, I'm usually able to make it up until between 9pm and 10pm. Sometimes I don't even make it up that late, sometimes it's right after my son goes to bed (8pm) that I end up falling asleep on the couch and my husband carries me back to bed.

    Gentle healing hugs,
  3. ldbgcoleman

    ldbgcoleman New Member

    I used to be down by 4:00pm on a good day and 1:00pm on a bad day. occasionally all day long. I have been much better since going through FFC ntreatment. I am going strong most days all day long. Good luck i think this is not unusual. Lynn
  4. JewelRA

    JewelRA New Member

    That has been my most recent pattern. It's really weird. For a while, I was the worst when I woke up in the mornings, and got better as the day went on. The past couple of weeks, I've been OK in the mornings and by 2 or 3 p.m. forced to take a pain pill and lie on the couch. I can't figure anything out! No rhyme or reason! LOL.

    The past 2 days, praise God, since starting Ultram, I have not had any of those "crisis" times where I have had to take a Lortab and lie down. And I actually have more energy thanks to starting Effexor! I am so thankful for the relief, and pray it continues.

    But to answer your original question, yes, I've had that pattern and don't think it's necessarily unusual.
  5. Cromwell

    Cromwell New Member

    I keep seeing your posts and see how similar my symptoms are to yours. I go to bed at 8.00pm due to this. I do not feel great immediately in the am but feel Ok after I wake up slowly, although I sleep so fitfully, I am awake. Then I do OK for about an hour befopre the trudge downhill starts.

    I get fed up too.

    Love Anne Crowmell
  6. victoria

    victoria New Member

    it is also quite common to find the opposite... I drag all day... find all too often I am in overdrive anytime between 9-12 at night. Often find my almost everyday chronic sinusitis headaches also go away, but not always.

    Well, obviously this does not help one to stay on any kind of 'everyday schedule'!

    Sometimes I wonder if some of it is not genetic... I was this way even before I was 12... my daughter and son are too, altho we do know my son has chronic Lyme.


  7. lana33

    lana33 New Member

    For me it is totally different. Most of the time, I feel bad all day, sometimes worse than others. Usually by 6pm to 7pm, I start to feel pretty good. I sometimes feel so good, I hate to go to bed. So I usually stay up late.

    I have always thought of myself as a night person. Maybe that does have something to do with it. I am not sure.

  8. TxSongBird

    TxSongBird New Member

    I get up at 4:00 a.m. every work day morning because I just wake up. I go to bed every evening during the week at 8:00 p.m. because I have lost my steam and can't function after that.

  9. Jana1

    Jana1 New Member

  10. Michelle_NZ

    Michelle_NZ New Member

    Thanks so much for your responses.

    Not tha I would wish this on anyone, but sometimes the only way I get through the day is to remind myself that there are thousands of other people all around the world who DO know what I am going through because they are going through it too.

    Take care
  11. painandagony

    painandagony New Member

    I never feel good or have relief of symptoms or decrease in severity. I wake up feeling like a truck ran over me and feel the exhaustion all day long. I get more done at night, but I don't really feel better....I just have to get stuff done.

    Thank goodness some of you have a couple hours of reprieve, I sure wish I did.

  12. ll1816

    ll1816 Member

    Until recently, I would literally feel dead all day until late afternoon, early evening.

    My cortisol (salivary) shows I'm very low in the a.m. and early afternoon, but at night I'm a little on the high side.

    I've been taking Cortef, 12.5mg every morning for the past two weeks and liquid melatonin at bedtime and I'm noticing a difference.

    I don't take as long to wake up now and the melatonin, along with Clonazepam, seems to help me shut down easier at bedtime.


  13. sueliza

    sueliza New Member

    I wake up stiff and sore, but it works itself out in an hour or so. Then my best time of the day is probably 10-2.

    After that the pain increases until I finally take an Ultram late afternoon. By the time I crawl in bed the pain is usually ramping back up because the Ultram is wearing off.

    I have FM and was wondering if the people who feel more energized later in the day have CFS? Interesting topic!

  14. Bruin63

    Bruin63 Member

    is usually when I start waking up, and by 2 am, I have to get up.
    I can get more done in the am than I can later in the day.

    I also go back to bed, around 2 pm, and then I get up again, for a couple of hour's, then back to sleep, for a few hours.

    Have been this way, for over 10 years now. You would think my family would remember and not call me in the afternoon's. lol.

  15. JLH

    JLH New Member

    Well, I'm always "bad" when I get up, no matter what time it is, but by nighttime, I'm in awful shape. This happens every day.

    By evening, my low back is causing me so much pain that I can't stand up, and the bone pain is really bad.
  16. Kathleen12

    Kathleen12 New Member

    I wake up feeling normal untill I make the morning coffee. After the coffee is made, then I realize that this is going to be another one of those days. The exhaustion sets in. And I am wiped out for the rest of the day.

    I get plenty of sleep and sleep soundly all night. I usually get about 7 hrs sleep. At some point during the day I get so bad that I have to lay down, and after an hour of rest, I'm fine again. But only for the moment.

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