How many a days a week are you in bed?

Discussion in 'Fibromyalgia Main Forum' started by meowee, Feb 4, 2007.

  1. meowee

    meowee New Member

    I am now to the point that FM keeps me bedridden for 3 days a week.


    How often are you bedridden?

    Hugss
  2. enjoysue

    enjoysue New Member

    I'm probably one of those dumb ones who doesn't listen to her body but I had decided to stay in bed all weekend long and possibly monday to see if I could end this flare. It's like I have a constant flare everyday anyway but this time my muscles are so fatigued they don't want to move where I tell them to move.

    Of course something came in the way of that today so I wasn't able to stay in bed but I'll probably do it during the week. I want to see if it helps.

    As it is I am taking a million breaks during the day but I think laying flat in bed and able to stretch and contort my body this way and that that I just might be able to settle things down. I'm just afraid of life passing me by if I stay in bed :-(
  3. charlenef

    charlenef New Member

    i have been in bed about 22 hrs a day for a few years i can only get up for 10 - 20 min at a time if i have to be out for more than an hour im done for weeks sometimes months charlene
  4. jole

    jole Member

    Usually two days a week. It is not a matter of choice. It is not because of a flare. It is not because of the pain being soo severe (although it is).

    It's because I try to make the best of each day, and several times a week the fatigue is soooo bad I cannot force myself out of bed. It's because it's impossible to do otherwise.
    [This Message was Edited on 02/05/2007]
  5. Mini4Me

    Mini4Me New Member

    I'm in bed usually 2-3 days a week. Good thing there's a public library nearby, I read a lot!! Only problem is, my neck and upper back hurt when I lie in bed all day reading.
    Mini
  6. pasara

    pasara New Member

    One thing that we purchased was a really comfortable recliner chair. It is in the living room, by south and west facing windows, and on it is a sheepskin. We jokingly refer to it as my "throne." This was a really good investment for two reasons: (1)I am not isolated in the bedroom so much, but have a change of scenery and can be with the rest of the family when I want; and (2) it is better for sleep rhythms if your bed and bedroom are only used for sleeping, so your body recognizes when you go to bed you are there for sleep. I learned that no two recliners are alike, and some fit my body better than others. I sat in every one and chose according to comfort for my body. I would recommend this to anyone who spends a lot of time bedridden from fatigue.
  7. FMsolider

    FMsolider New Member

    I usually have one or two days a week were I need a lot of rest. I hope by bedridden you do not mean all day long! That is the worst thing for most of us. You got to strech and get some blood circulating....you NEED a little movement.
  8. lavender14

    lavender14 New Member

    I am in bed off and on all day long. I can be up for about 30-40min. (use to be 20min.) yrs. ago. and then I have to be in bed for at least 30 min. It's the way that works to control pain. escpecially in the lower extremeties.

    I have had fms/cfids for 17 yrs. and yes I would like my life back. I don't remember what it was like before being ill.
    Charlene, how long have you been ill?

    Jennie
    [This Message was Edited on 02/05/2007]
  9. SusanEU

    SusanEU New Member

    Last year I used to be in bed at least 1-2 days a week.

    Now, if I have a flare, I hit the recliner too.

    My recliner is really the best spot for resting, working (laptop), daydreaming and the whole bit.

    I have been making a point of getting up regularly, stretching and moving around, and I think that helps me with the pain and stiffness.

    sue in Ontario
  10. naturebaby

    naturebaby New Member

    This is a good question!

    I'm like lavendar; I'm in bed off and on throughout the day, and spend a lot of time propped up on the couch with a footstool (oh, a lazyboy recliner would be HEAVEN!). My body simply can't handle things without a few breaks to rest, and my old back injury is so bad now - along with the fibro aches and fatigue - that it leaves little choice.

    Even so, I am bedridden from time to time, probably about once every two months or so, for anywhere between one to four days at a stretch.

    I always fall into the trap of doing too much on days that I feel "good" (good being a relative term!) and then pay for it afterwards.

    wishing us all well again, nature
  11. WhatHappen

    WhatHappen New Member

    My days vary in bed. It really depends on how much I push myself. On average I'm in bed 3 to 4 days a week. I only get up for bathroom breaks and if no one is around to bring me food, I may venture to the kitchen for something to eat. Sometimes I may get up around 7 or 8 pm at night with enough energy to take a shower and then go back to lying down. Those days when I "feel good" I try to make up for lost time or see if the fatigue/pain/tiredness has gone forever. (BIG MISTAKE!) I like the idea of the recliner. It is a good idea to stay out the bedroom and get a change of scenery. Eventhough my two cats hang by my side most of the time, they too will go to the living room to soak up some sun everyday.

    Liz
  12. charlenef

    charlenef New Member

    ive been in bed for a few years now i had pain for about 8 yrs but i was still able to do things charlene
  13. desertlass

    desertlass New Member

    This feels like the question that many would like to ask, but are afraid to, for fear of being shamed. I've often thought "I'm the only one!" and am admitting to some guilty crime. I feel very senstive about this, because I spend a lot of my day in bed so that I can be more up and around when my kids get home. And then there are some days when I need them to help me get up, and those are so extremely frustrating.

    Some days I can't seem to make it out until dinner time and then my best hours are usually in the late evening. This is so opposite to how I used to be. I was always an early to bed/morning person.

    One reason I am in bed is that sometimes the sunlight and noise from the rest of the house bother me so much I have to escape. This is also not the way I used to be. I loved to go outside and be in the sunshine and see people.

    Sometimes when I'm upright for too long (some days, "too long" is an hour, some days it's "two minutes") I feel nauseous, light-headed, my heart pounds, etc. Then the very next day I can be upright the whole day and be just fine. I can have several days of being upright and walking around slowly, and then all of a sudden, bam! I need to be totally flat.

    I had about four or five months of last year that I was able to be up for most of the day. Now I am spending more time in bed, even though I made some healthy changes during the more active phase. This is not something I have a great deal of control over. It doesn't feel good to lie in bed. No one has to tell me to get up as soon as I can.

    I know I'm tired of trying to "prove" myself in this area. It's not as if I've "given up"-- this has nothing to do with mindset. I just don't have the cooperation with my muscles as well on some days/weeks. I work with what I'm given on a daily basis. I suspect the same is true for people who are much sicker than I am.

  14. fungirl2100

    fungirl2100 New Member

    Friends,

    It does pain me to hear that some of us are bed ridden. I thank God everyday that is not me. Not to make others feel bad, but I do my darnest to keep moving & not allow the bedridden thing to happen. There have been plenty of days I have wanted to lay down & not get up, but I have a family to care for, chores to do, a life I want to live &
    my Great Dane puppy gives me lots of hope & joy. Playing with him even when I am pretty much dead to the world means as much to me as it does to him.

    Odin my Great Dane puppy came from an abusive household. Though we have had him only 6 mos or so he is now an official member of our kooky family. WE had twin Great Dane boys (litermates) that we lost one month apart from each other from the same thing aspereated phneumenia. They were my hubby's mom's dogs that she gave him before she died from M.S. so he came to me when I needed him most.

    So, that is what truly keeps me going.

    love your friend,
    Fun :)
  15. kholmes

    kholmes New Member

    It feels better to know that you're not the only one, isn't it?

    Pasara is on to something. We also bought a Lazy Boy recliner, which I'm in for a lot of the day, with my feet up and my blanket on. I have severe CFS. Quite a different life; five years ago, I was climbing the highest peaks in Colorado for fun.

    I'm in bed from 2 to 3 every afternoon, and during the evening after 6, I'm almost always in bed.

    But the recliner has allowed me to be out in the living room a lot more.




    [This Message was Edited on 02/05/2007]
  16. meowee

    meowee New Member

    I try to keep moving like all you do. I must say, the days I am in bed are more do to the extreme fatique. I am always in pain, and with the help of meds can pretty much take it, but the fatique is what slaps me down.

    God bless you all.
  17. pearls

    pearls New Member

    I haven't had to stay in bed, thank goodness. But I wish I could sleep! For a long time, I could not stay in bed because it hurt to be in bed too long with insomnia. When I had wrist pain really bad, it got to where I could not be horizontal and get any relief. In fact, I couldn't even sit and get relief. The only way I felt better was to stand up, and that's rediculous when it is nighttime and you really need to sleep! Luckily for me, I have had two different medical treatments that have both completely stopped my wrist pain whenever it gets bad. I do spend a lot of time in my recliner, though, and I use the built in heat, as well, especially when my back hurts.

    However, I think it is important - if at all possible - to get moving. Believe me, I am not naturally inclined to do exercise. I read someplace a long time ago about a person who was told by her doctor she had to get some exercise. She told him she hurt too much. He replied that she could start very gradually, and asked her if she would rather hurt and be weak, or hurt and be strong. She chose the latter, and by very slow steps, was able to walk just a little, then a little more, until she was moving a lot. I know some of you want to throw daggers at me right now, since this discussion is about staying in bed. But, movement is necessary for life. So much about our health depends on it.

    Still, I know that sometimes bed rest is the only thing to do, such as when a flare is coming on. I just hope that people in that position don't rely on it for too long. It can get harder and harder to get out of bed.
    [This Message was Edited on 02/05/2007]
  18. TinaJones

    TinaJones New Member

    I rest off and on throughout the days, Monday through Friday. I am not usually in bed, but I have to rest on the couch, etc in order to keep my symptoms down. On the weekends (when my husband is home from work)..there are many times that I'm bedridden the entire time.

    The reason for staying in bed/resting is because of the horrible fatigue and the heart symptoms that I have. Resting is the only way to get my symptoms down.

    Fungirl2100, I don't think any of us are bedridden by choice. I know that may not be what you were implying, but when you said "you don't allow yourself..." to become bedridden - I was a bit confused??

    I have EVERY reason to be out of bed...I have a great husband, six active boys that are involved in many things, a great church and friends, etc. All of this combined with my deep faith gives me every reason to keep going.

    But there are days that I just can't do it. It's not by choice...it's that my body cannot physically do it. Believe me - I'd give anything to return to my once VERY active self... I, too, have a very, very FULL life that I want to live - as I'm sure most on here have too... But, for some of us, being bedridden or resting is not a choice -it's just what we HAVE to do in order to survive.

    Take good care...Tina
  19. SweetT

    SweetT New Member

    I also work "full-time". I should say I'm currently a full-time employee with FMLA. Lately, I've been taking off a day per week, as my body crashes with fatigue and pain. Also, now that I take a class on Saturday, after that, I usually crash in bed until Sunday late afternoon. Sometimes it gets so bad that I have to take a sponge bath for I cannot stand up long enough to shower. And yes, I have a shower bench, but don't always have the energy to sit up either.

    I soooooo need to stop working outside of the home. But I also soooo need to take care of my kids and have no husband or family to take care of me if I get evicted while waiting for a disability claim.

    I recently signed up for DSL and have the gateway system, where you can be online on multiple computers in your home. Now, I just need an internet-ready laptop, as my laptop has conked out on me, and it's sooo old anyway. I will obtain an internet-ready laptop so that I can type in bed if I need to.

    I also want a wooden rocking chair, so I can read and rock in front of my fireplace, as I'm usually cold and reading relaxes me to sleep.
  20. whoachief

    whoachief New Member

    I have 6 children under the age of 8 so "staying" in bed isn't even an option for me. HOWEVER I try to go to bed no later than 9:00 every night and don't get up until 8:00 in the morning. I take the kids to school (except 2) and come back home and "rest" until it's time to pick 2 up at preschool at noon. In the afternoon I either lay down in bed or on the couch for AT LEAST 2 hours (usually more) while the little ones nap & the 3 & 4 year old "play" in the room where I am. On the weekends sometimes when my husband is home I can rest a lot more during the day if I need to.