Anyone Housebound or Bedridden with CFS/FM?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Oct 9, 2008.

  1. greatgran

    greatgran Member

    Just wondering how many are bedridden or housebound with CFS/FM.

    When I first came down with CFS I was mostly housebound and stayed in bed a lot. Then I was able to get out some, how wonderful, never was able to travel and not do much but was out of the house.

    Now, since May I have been slowly declining back to being housebound and stay in bed a lot. I was trying to keep my greatgrans and now no longer able to do that.

    I just see myself getting so much worse.

  2. GKTLA

    GKTLA New Member


    Yes, it's been off/on for about 4 years now (I'm 35 now). I have been through some very, very long bed-bound phases. I was bed-bound this past August and September. I called my CFS doctor and started up again on liver extract shots, Heparin shots, amantadine, and some other supplements. I was able to do a lot more than I ever thought over the past week. But I still feel unwell and stay inside every few days. Naps helped during the week on days I was out and about. Not sure if any of the treatments are helping or if it's just the cycle of the illness.

    My 72 year old mother is visiting this week and she has some health issues but is active and about every day. She also can tolerate heat way more than I can which is surprising. Strong heat just does me in.

    I know it is so boring, frustrating, and depressing to be stuck in bed for a long time. Just try to focus on the cycle of the illness and that you will come back around at some point for who knows how long. Some days, when I feel like I can do it, I just shower and get dressed and ready to go out even if I never make it out. It is a baby step. But only on days where I feel it is possible.

    Are there any baby steps you can take over the next week? If I am going to leave the house, I make sure to eat well, especially foods that are salty to help keep blood pressure up, have a cold water always at hand, and make sure that there will be a way to sit down if I need to at any moment.

    Do you think you can get out for maybe 15 min. this week?

  3. dc1980

    dc1980 New Member

    Great Question Greatgran!!!!

    Oh yeah I have been there, I was diagnosed in June 05 and had periods where I have been bedridden from 1 to 3 weeks. However this year I was bedridden all of Aug & Sept.
    I went to PCP at the beginning of Aug 08 and he changed my meds and started me on a new antidepressant. By the 2nd week in Aug., I was in bed day and night. Went again Sept 08 and he ran blood test and he gave me a vitamin B shot because I told him I had no energy, that didn't help. I was still bedridden. I went to the pcp Oct 3rd and come to find out at that visit, I had an infection, no outward signs except at times I felt as though I had a fever. He gave me some steroids and shot of antibiotics and a few other scripts.

    The strange thing was when I was in bed all that time, I felt mentally clear but my body did not want to function and it didn't. There were so many things I missed doing and have tremendous quilt because I could barely take care of myself even as far as daily showers. It would absolutely wear me out. Thank goodness I have an understanding husband, he was so supportive. I honestly thought many days I was going to die or something even though I knew I wasn't, my body sure did feel like it. I was so bad that I never even went to get the mail not once in Aug or Sept., never drove, never cooked, never washed clothes, did not watch my grandson and that broke my heart but I just couldn't do it. I would go days without any sleep at all, just lying in bed watching TV. I also would go days without eating, I had no appetite. One thing that really scared me was at night or even during the day as I would resting to fall asleep, my body would start jerking so bad that I could not go to sleep. Now I have always had minor jerks but not jerks so bad that I felt I was rising off the bed or jerking so bad that it would wake husband and me up too. I could go on but you get the message.

    I would not wish what I went thu on my worst enemy and hope I never experience it again.

    The meds he has me on now seem to have made all the difference. I am taking my time and not overdoing it as I do not want to relaspe in any shape form or fashion.

    This dd can knock you off your feet at anytime, then you never know when you might feel like dancing all night long (not that I wishful thinking) but sometimes I have the energy of a racehorse and of course the next couple of days I usually am in bed resting, taking pain meds. I cannot find an even balance, or can't figure out how to pace myself so I am not so out of touch with the world. It always seems like when I feel pretty good I try to get in as much as possible because I never know when I might feel good again.

    Surely someday, hopefully in our time they will find what the heck this dd is and what causes it and how to cure it. That might be wishful thinking also with the US budget the way it is.

    Hugs and energy to us all, dc
  4. greatgran

    greatgran Member

    Thank you for your replies, it helps to talk to someone that can relate.

    Grammy 27, so glad the Armour is working for you, AMEN, you have found something that can give you some type of life. I have gone round and round with my doctors but they say my thyroid is fine and will not even think of giving me anything when there is nothing wrong. I do hope you continue to stay well.

    GKTLA, sounds like you have had your share but happy to hear there is some improvement. As far as baby steps I am hoping once this sinus infection has cleared up that will help but yesterday I was so nauseated I couldn't take my antibiotic. For me when this hits seems I just have to not do until my body says I can take a few steps.

    DC1980, Glad you have found meds that help, good to hear I do hope you continue to do well.

    Thanks to each of you,

    God Bless,
  5. charlenef

    charlenef New Member

    thet would be me i just turned 39 ive been bedbound for almost 5 yrs with cmp/fms i do get up every hr to move about and clean some usually 10 to 20 min at a time i cant sit in a chair more than 10 min and that is torcher id rather stand my hubby does all the shopping laundry and yard work he also helps me cook on sundays and he eats the same thing for 4 days god bless him hugs charlene
  6. mujuer

    mujuer New Member

    It's a good thing I like my house so much because I am stuck in it alot. I have arthritis and fibro just to name a few and both do not do well in this rainy cold weather. I have constant flares when it isn't summer so I have to stay home and take my med's which I couldn't do if I were out driving around. I do try to get to church and get grocerys every Sunday that I can though. It is rare that I am hit with the fatigue but when I am, I hit the sheets and am down for the count. No you are not alone. That is why it is soooooo nice to have this support group online. P
  7. abcanada

    abcanada New Member

    I too have experienced many cyclic episodes of severe symptoms for weeks, have a day or 2 of slight improvement, then down again for weeks. I have 4 kids, so VERY difficult! I've completely bottomed out a few times, ending up in the ER, as I couldn't care for myself & too embarrassed to ask for help.That was during the diagnosing process, when no organic reasons were suffacing & people were beginning to question my was I HAHA!I was on several drugs all to which did no good, and now on none. Have learned to cope with pain better, as essentially have no choice. Mood is still an issue .I think your body gets used to severe pain, & severe eczema over head face, neck / back/but & other symptoms. Migraines are my daily battle, and upper back, neck & myofacial pain. Pain causes one to withdrawl, very understandably...never thought I'd know about it, but have had alot of experience in my short years. Sudden onset from a postpartum hemorhage. It has not relented in 3 1/2 years.Take care, Laura
  8. texasrose204

    texasrose204 New Member

    pretty much housebound and spend alot of days in bed. Most of sept. was in bed. Have fm and lupus which is flaring right now. Not able to take shower lucky to be able to make it to bathroom. I took shower this afternoon and so worn out i layed down to rest after getting dressed and couldn't get back up! My bf was going to take me to dinner but so much for trying to get out of the house! It really gets old living like this! Thanks! Take care
  9. monicaz49

    monicaz49 New Member

    I go out in spurts and try to do the few errands i have in one swoop in sort of a zombie state. lol
    Im home ALOT. I am in bed a LOT too but have to get up and function to do things for my kids.
  10. 5hei1a

    5hei1a New Member

    I am so sorry that so many are bedridden or housebound by this DD. Right now, I am still able (most of the time) to go to work (office job, not physical). But, that is it. I use the absolute last drop of energy everyday way before my work day ends. I have to try to just not screw something up at work because I am so fatigued and unable to think clearly.

    I do absolutely nothing else. My disabled husband washes the dishes, does what cooking gets done, and tries to sweep the floors occasionally. My 17 year old son takes care of himself and washes his own clothes. I have no energy for my grandchildren or any of my family for that matter. My 65 year old mother who has her own health issues comes on a regular basis and does what she can to help me.

    This DD is so scary and frustrating me. I have been in a major flare for about four months and have come very very close to losing my job and becoming housebound. I try to remain positive and hopeful. It is hard.

    Soft hugs,
  11. Rosiebud

    Rosiebud New Member

    Last couple of years been the worst.

    I started a 'diary' a year past, just to see how many days I actually spend in bed and how many days I actually get out.

    B - Bed
    O - Out
    U - Up (that means up for an hour or two, if more than 3 I put
    in the amount, very rare).

    I'm lucky if I get out 4 times in a month and thats our for a little while not for a day.

    I'm not getting better.

  12. andreake

    andreake New Member

    Just for hope....I was bedridden for 3 years, on phentonol and lots and lots of morphine... still wanted to die from the pain.

    I am now working full time, taking care of my home, three children and ride my horse several times a week. I thank God for how well I am doing now.

    I still have pain and bad days, but I do have a good quality of life now.

    You may want to look into transfer factor and vitalaxin. Both are sold on this site.

    Just keep trying to get better. Alternative medicine.. anything that wont hurt you, try.

    Don't loose hope that you can get better!!!
  13. jolandie

    jolandie New Member

    Hi i am 23 year old femal and am bedridden for 4 years now can walk to the bathroom and back that it on my bed or coutch 24/7
    try to lay out side but get weak i stared LDN may be it will for every one google it :)
    god bless you all get well xx
  14. ilovepink4

    ilovepink4 Member

    I spend my entire day in bed, all day, every day. I will get up and let the dog out, feed the cat and scoop the litter box, maybe put in some laundry......then I sleep a few hours in the morning....and the only thing that i get up for is to help my daughter (disabled) or fill up my water glass, or let the dogs out....

    at night, i take a bath because the shower is too exhausting to stand and raise my arms to wash my hair....and i take a bath every other night, most often....i totally hate that but it is tiring....

    i have FM and myofascial pain syndrome....i just get exhausted when i am up for long and the pain afterwards is awful...

    i will leave the house for a school program, a doc's appointment or my hair appointment....

    i feel bad when i hear about others who get up and lay on the couch or move around the house more....or get dressed every day....i just don't have the energy.....i have some prescriptions that make a difference and will make it so i can get through those times i do have to leave the house....but, if i take them everyday, they don't work as well...

    right now, my husband is leaving me with two boys at home....a big house and yard, pool....don't get the wrong idea....not a fancy house and just an above ground pool...but i can't handle the laundry...he started doing it lately...he does the shopping and the cooking and driving the boys...and now, his drinking is escalating and he is really mean to our sons and me...

    i think there are lots of ppl like us, stuck in bed but once we start getting this bad, we disappear and become invisible. ppl forget we exist....
  15. ilovepink4

    ilovepink4 Member

    I think my thyroid is messed up. we test it over and over and my doc says that it is still good....that the doc's saying you are in the normal range is BS...but i can't get him to agree....he always is willing to test me but won't let me just try some armour....just to see if I feel better.....

    i wish i could buy it online and just do it....
  16. ilovepink4

    ilovepink4 Member

    I think my thyroid is messed up. we test it over and over and my doc says that it is still good....that the doc's saying you are in the normal range is BS...but i can't get him to agree....he always is willing to test me but won't let me just try some armour....just to see if I feel better.....

    i wish i could buy it online and just do it....
  17. RainbowAngel

    RainbowAngel New Member

    Hithere, unfortuately I have on many accassions.. I try to help family o n the weekends to earn some money that i much need. By sunday night, I can barely move and am down until Friday.There have been times when I am down for weeks or months at a time.. I am only 46 years old. and it is very difficult to deal with.. I have no support withon the family or outside. Seems that when I got my worse, everyone ran.. During the week Monday through Friday, I am in bed 90% of that time..
  18. Janalynn

    Janalynn New Member

    I work outside of the home a few days a week, the rest of the time, I'm down. I go to the Dr. and yes to my hair appt every 10 weeks. Any other appt, I absolutely dread. I don't grocery shop - haven't in over 3 yrs. I do not run errands, I'd rather do without.

    I don't know why I crash so badly. Literally on the weekends, I can barely get up - NO it's nothing something you can force yourself to do, it's beyond that. Again, if you haven't felt it, it's like having the worst flu kind of tired, achey where if you did have the flu, you'd have 3 blankets on you. I don't sleep much at all at night, so I guess it's no wonder I'm so exhausted. It just seems like when I really don't have to go anywhere (work), it's like my body knows it. It's weird.

    I'm really starting to get pi_ _ ed off about it. I am getting ready to travel (by myself) to visit family. I dread not only the traveling part, but the fact that I am not going to want to or be able to GO GO GO all day. No one will expect me to - however, many times it's my own expectations that upset me so badly.

    BDT- I also sleep/rest/nap on the couch. It is so much more comfortable for longer periods of time. I lay on my side with pillows between my knees and I can rest my back up against the back of the couch. Also, at least I feel like I'm in part of the house where people "live".

    I'll tell ya though, a NAP on top of our Sleep Number bed is heaven. I sleep on top of covers with my favorite microfleece blanket over me, surrounded by pillows. Of course, 9 out of 10 times I can't fall asleep after I get all set up. Arrrgghhh. I can however, fall asleep sitting straight up WITH a cup of coffee in my hand - yes it starts out full.....

    I have to add that when I am at work and I'm feeling a 5 instead of a 7 or 8 on the pain level, I do enjoy being out with people, chatting with the girls, being productive. I take pride in my work and abilities. Some days my boss knows I'm not doing well and tells me to finish up at home.

    Boy - I'm chatty this morning. Hmmm, slept all of 3 hrs last night - should be fading shortly....