Are you or have you been bed ridden

Discussion in 'Fibromyalgia Main Forum' started by Shazzy, Apr 4, 2003.

  1. Shazzy

    Shazzy New Member

    Hi all,

    Was wondering how many of you are or have been bed ridden.

    I want to know how long you have been in bed or were in bed.
    Also those who were and are now up and about. How did you do it?

    I spend 95% of my time on my bed and so want to get out but everytime i attempt it i end up feeling so much worse.

    Only thing i can do is come down when i first wake, make my cereal and then spend 30 mins or so on my computer.

    The rest of the is spent doing relax tapes, watching tv, reading but mostly just laying there resting. I have done this for 6 months now.

    Shazzy





    [This Message was Edited on 04/05/2003]
  2. patchwork

    patchwork New Member

    for 6 years of my illness.Unable to do anything at all,trying to read or watch T.V made me sick and dizzy as my eye muscles were badly affected. But now I'm up and about for about,just have to sleep 11 hours and take a nap! Hope you start being able to be more active soon!
  3. JP

    JP New Member

    Hello Shazzy,

    I have not been down with my FM. My arthritis won't allow for much downtime. I, on the other hand, keep on moving to keep my joints working. I wouldn't mind a day in bed from time to time.

    take care,
    Jan
  4. bejo

    bejo New Member

    I've never been bed ridden,although there have been times when I felt tired enough to collapse.I have OA in my upper and lower back and I can't lay too long at a time.Even at night 7 hours is my absolute top time I can spend laying down.I do lay down for a few minutes during the day though.
    bejo
  5. pinkquartz

    pinkquartz New Member

    well its wrong to judge but i cannot get my head around people saying they would like a day in bed because i have no choice as i can't make my body move about . I understand pain because i am in constant pain but i still can't move ?!?

    Also i don't know how so many people manage to work because my body collapsed and basically stayed this way !!!!!!!

    Having said this you have only been in bed for 6 months . It s early days and if you rest now you have more chance of recovery.
    I believe i am so severly disabled because i pushed on and on and on when i should have rested but that was in the old days before people knew better.

    so i have been bed bound and now i am about 95% housebound.
    I am better than before in some ways and never ever give my deepest hope to get well enough to be able to walk about outside again. I have to use a wheelchair and have done for 10 years.
    take care
    pinkquartz
  6. Hippo

    Hippo New Member

    Wouldn't say exactly bedridden; that would be a little bit of an exaggeration. But I don't leave the house unless I have to. My most "active" time is sitting on the computer. I have pretty bad headaches, so I prop myself up in bed with pillows and watch TV as much as I can. I haven't gotten better; actually I have gotten worse and really have no answers for you. Everyone is so different. I am always intrigued when I read about somebody doing better due to this or that supplement, but I haven't had much luck with anything. After 20 years, I am not that eager to try new supplements much anymore. I am 50 and have been sick since I was 30. I sort have developed a been there, done that kind of feeling.

    Hippo
  7. Sissy123

    Sissy123 New Member

    My fibro and cfs, ibs...migraines, rib pain, back pain...rls, spasms, have kept me in bed more times than I can remember. I have used crutches many times, tens unit, a neck strechter, epidurals, meds, bio-feedback, meditation...you mention it and I have tried it, but the best lesson I have learned along with my very supportive family is to not over do anything or I will for sure end up in bed. I can barely get up in the morning the way it is, when I can sleep, I go directly to my heating pad and take meds with my coffe and about 2 hours later I might feel like doing something. I often do things when I am in alot of pain and at times it helps me to keep my mind off of me. There is a site at fibrohugs.com that explains to "normals" what it is like to have this horrible disorder that might help those having problems with others not understanding things, like we may have to cancel plans at the very last minute because of fibro. We look fine, but are far from it. But yes I have been bed ridden for periods and just have to make myself get up and try at least to have a life. I have several hobbies, but my husband always knows when I am pushing it too much and he always says "take a break, your doing too much", this will end me up {or down I mean} in bed for who knows how long. Good luck.
  8. layinglow

    layinglow New Member

    Shazzy--I know how you feel being bedridden. I was bedridden for 5 months after the onset of Fibro and FMS. I was in excruciating pain, and just too ill, to get out of bed, except for using the restroom. My husband helped me with very quick baths, and other care. The doctors I were seeing were totally inept.

    I found a wonderful doctor, a specialist in FM/CFS/MCS , and have been seeing him for 7 months now. I am still homebound for weeks at a time, but able to sit in a recliner, and sew, read, or watch tv. I can even sit at the computer, in a very comfortable chair. I can get up for a few minutes at a time, maybe to fix a sandwich, or brush my hair and teeth, but must sit down within 5-10 mins. My husband takes me on outings with him on occassions to get me out of the house. Often I sit in our reclined, captain chairs, in our van while he gets out and shops. I have the pain to a level that is tolerable now, unless I overdo. The fatigue, and general feeling of malaise--feeling like I have endless days of the worst flu is what we are tackling now. I have actually had 6 good days in a row now with my newest regime. Having this Specialists help is making all the difference in the world....I now have hope. We have gotten rid of IBS symptoms, sleep deprivation, Systemic Candiasis, Mini Seizure activity, Depression, and have the Pain under control. He has been such a wonderful advocate, and willing to try all treatments available, until we find the personal regime, best for me. He even helps by using alot of drug samples, as I am uninsured, and he is very compassionate, and reasonable with costs.

    So to answer you question on how to do it---I research, alot. I see a physician who stays atop the latest research, has a large enough client base which gives him an A+ when it comes to experience, and is a very dedicated, hard worker.
    I have come to the conclusion that there are many systems in our bodies that are down, and we began working on the most serious and detrimental first, and will continue working down the list. As we try new things, many are discarded as being ineffective, but others through trial and error have really helped.

    Best wishes in your quest for wellness. I know how hard it is to feel life is just passing you by, and wondering if there is any reprieve in sight. You will be in my prayers, that those days will soon pass, and you will be able to be more mobile.

    LL
  9. Shazzy

    Shazzy New Member

    I was interested to hear pinkquartz say that you should rest and not push yourself. I often get told i must get up and dressed if i want to get well as laying there will just decondition my body even more.
    I do try to exercise my legs while laying there and i always walk downstairs at least once a day and a few yards to my back gate if i can.
    When will i know when to do more as often you dont feel the effects until later telling you you over done it.

    Shazzy
  10. pinkquartz

    pinkquartz New Member

    my post wasn't very complete but if you go to my profile that has more detail.
    i would think that getting up and doing just a small amount of movement each day is a GOOD thing because staying in bed 24/7 will cause your muscles to get weaker and i am saying this from experience too.
    I was doing too much when i was very ill and still getting up to do a full-time University degree, work part-time to pay the rent and bring up my daughter by myself. !!!
    That was way too much and i have paid for that ever since.
    I did this for a period stretching over 5 years and i kept going until i crashed. once i had crashed i continued to get worse for a while and then i stayed the same for years and now i can say there are some improvements.
    I think you should not push yourself too far but you need to get up and keep your muscles moving just a bit.

    unless doing this much makes you feel loads worse ? what do think ?

    But see this as a time to give your body all the love and healing you can.
    best wishes
    pinkquartz
  11. pinkquartz

    pinkquartz New Member

    you asked how to know when its time to do more ?
    i think you feel it in yourself the urge to move and as long as you don't feel worse the next day that was right.
    its a lot of trial and error and working out how you feel in your body.
    eg I went food shopping with my home help on friday cos i hadn't been and done this for over 2 months. plus it was a sunny day and i thought go for it but i also knew i still felt shakey and sure enough i still feel worse 2 days later. so i will wait til i feel stronger next time.
    i don't have enough help in the home any more, and i get over tired just getting around the house and i believe this is blocking my recovery because i am always pushing my body too far.
    i hope this is helpful
    pinkquartz
  12. Jackie41

    Jackie41 Member

    I'm not bedridden but for the last 7 months, I've been unable to walk very far without using crutches. I would probably be housebound without them.
  13. tandy

    tandy New Member

    There have been bedridden days for weeks on end.....mainly when i'm really flaring heavy. Mostly I'm not acually bedridden with this DD,I probably could be because I feel the constant urge to lay around~But I force myself literally to do some normal things,housework and cook but I do pace myself big time!! Something as easy sounding as going to get grocerys??I do my shopping on mondays if I'm able,and I'm telling you,Tuesday I'm shot!!even into wednesday I'm feeling wore out~ by thursday i'm back to my almost always pain level of 7.(tues.,wednes. would be at 9-10)!!! I really don't go many places thou....seems like Drs. appointments,grocery store,library,etc. Whatever I'm doing,I can't last much longer than 2hrs at a time~(then I'm really needing to rest,lay down for a bit~) I'm more housebound in the winter months.I hate the cold!!!
    Warm ((Hugs)),
    Tracey
  14. praisingHim

    praisingHim New Member

    I have been bedridden. When I first got the illness last July, I didn't know what was wrong with me. After 3 months in bed, I was hospitalized, with all my test results coming back fine. The day I was discharged, I finally talked a doc into getting me an antibiotic. I got some better, to where I was no longer bed riddon. Now, several months later, I tested positive for mycoplama, and am on antibiotics. Now I know what the short term antibioitcs helped some last year..Best wishes...
  15. praisingHim

    praisingHim New Member

    I have been bedridden. When I first got the illness last July, I didn't know what was wrong with me. After 3 months in bed, I was hospitalized, with all my test results coming back fine. The day I was discharged, I finally talked a doc into getting me an antibiotic. I got some better, to where I was no longer bed riddon. Now, several months later, I tested positive for mycoplama, and am on antibiotics. Now I know what the short term antibioitcs helped some last year..Best wishes...

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