Dr told me to stay out of bed.

Discussion in 'Fibromyalgia Main Forum' started by laspis1, Feb 14, 2006.

  1. laspis1

    laspis1 New Member

    I have been in a crash for weeks now, but stopped working two weeks ago because I was so weak and fogged and suffering anxiety attacks and my other 'attacks', I finally could not do it anymore.

    I asked to go back on lexapro that I used to take and it seems to have helped slightly so far, but at my dr apptmnt I said that I cannot sleep.

    He asked if I take naps during the day, I said, no. So he asked how much time do I spend in bed, I said, that the last two weeks, most of the time because I feel sick and have to lie down.

    So he said that I cannot stay in bed more than 7 hrs because my body does not feel tired enough to sleep.

    I feel so tired and exhausted, that does not make sense and on top of it, the sleeping problems started months before I crashed this bad and I worked, and I was tired, and I still could not sleep. He would not listen to me. SO FRUSTRATING!!!!!!I feel like SCREAMING.

    I am not upset because he told me to stay out of bed, I am upset because he was so adamant that this is what causes the insomnia and I know it is not it, but he would not even consider it.
    <br>[<i>This Message was Edited on 02/14/2006</i>]
  2. WoodstocksMusic

    WoodstocksMusic New Member

    I wanted to ask if he was a sleep specialist...but I will not...next I wanted to ask if he was an FM/CFS specialist...but I will not...

    But I only slept for 4 hours last night and after the kids left for school I crawled back into bed and slept for 3 more hours...so instead of responding to what I think was a very rude statement from your doctor I will just let others respond...

    Maybe I am just sick of hearing the press grilling the presidents press secretary over this dang shooting thing..they are just all made because they decided to take care of the shootee instead of sending someone out to give a "breaking news" report to the press hounds...I am about sick of news people...well I certainly did not mean to go there...

    I better stop before I really get on a roll.

    I am sorry your doctor was so impathetic...He must not be getting a valentine today wouldn't you think?

  3. backporchrags

    backporchrags New Member

    to hear you are suffering.
    Many people with FMS do not go into non REM sleep naturally and need meds to get the deep, restive sleep. I have taken a sleep aid for 15 years now and if I forget to take it I awake often during the night and am in such pain in the morning.
    If a second opinion is not an option try keeping a sleep journal. Write down how much you are in bed, how many hours of sleep you are getting, how many times you awake in the night etc.
    I often find the more prepared you are for a doctors visit the more seriously you will be taken.
    Good luck!
  4. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I hate it when doctor's don't explain things properly, so a patient understands why they give certain advice. He obviously expects you to just listen to him. Fat chance if it was me too, if I don't like certain advice, they better give me a good reason for it, or I won't take it.

    But having said that, here's some reasons why he may be right. The key was when he mentioned your sleep disorder where you only get so much sleep even though you are exhausted. It's a part of something sometimes called sleep hygeine to make your bed just a place of sleep, it helps condition your body to listen to cues better and to condition your mind. I'm not saying to not get the rest you need, but do it more on the couch, and if you really need the comfort of your bed, rest in bed in shorter spurts.

    This really can make a big dent. I'll post my own little story about that in a separate post since this is so long.

  5. 69mach1

    69mach1 New Member

    i have it but have not read it yet...skimmed though it...
    but intstead of being in bed can you try your couch...it's just that the bedroom is supposed to be like a sancutary for sleep...just making a suggestion.

    and i understand the no sleep thing fully been years and still trying to get it right...i don't know if there will ever come a day that i do...but i have a sleep study scheduled for this sunday..so that may tell another story as to why i am so flipping exhausted...

    try the book you maybe able to get it at you local library...i bought my on amazon.com.

  6. laspis1

    laspis1 New Member

    I sincerely appreciate all your advice...

    I know that it is not a good idea to stay in bed when you are not asleep, but I have been in this half conscious state unable to move much and bed was the only place I could get some rest.

    The insomnia started a lot earlier, so I know it has nothing to do with the sleep hygiene, it is the flare insomnia and even though I can fall asleep the first time, I wake up with palpitations and anxiety and cannot fall back asleep.

    I still have few sleeping pills left, but I have to use them sparingly. I am not one for sleeping pills but sometimes it is better than exhaustion exacerbated by lack of sleep. I have used them once for a month or so three yrs ago, so it is not like I am addicted to them.

    Under most circumstances the sleep hygiene rules are a good idea, I just think I am beyond that at the moment.

    I have just realized that this doctor never uttered the words Fibromyalgia to me, he is dancing around it and not acknowledging that diagnosis by a rheumatologist he sent me to.

    The flare according to him is a depression, the insomnia is caused by staying in bed...I do not think he is going to be helpful as much as everyone keeps him in such high esteem.

    I feel disappointed, because I had high hopes when I first signed up with his practice. Sorry to vent, you have heard all this before, over and over again.
  7. laspis1

    laspis1 New Member

    He actually gave me a name of a neurologist he wants me to see because I told him of the muscle twitches. So I will ask a neuro for the sleep study.
  8. elsa

    elsa New Member

    He is not treating chronic fatigue syndrome or fibromyalgia. He is treating you for depression. He obviously does not understand these illnesses ... but worse then that, he doesn't believe in them.

    I'm afraid we have to be our own doctors ... decide what is the best treatment path for us and then find a doctor (or team of doctors) who will put that plan in place.

    Research, get a good understanding of these illnesses ... get a good understanding of treatment directions and match one up with your believes in healthcare. Are you an entirely natural supplements, yoga, massage, etc person or you very traditional? Personally, I find I like the two mixed together ... best of both worlds.

    Once you decide what direction you want to go in, then move heaven and earth to find the healthcare professional right for your program.

    But for starters, you need to get stablized .... and you need to find an MD worth the title to help get you there.

    Once on track to stabilization, start reseaching. You can do it!


  9. Lolalee

    Lolalee New Member

    when we go to a doctor for help and sometimes get just the opposite. If the only place you can rest is in bed, and you are in a flare of CFIDS, then stay in bed. You are the one who knows your body.

    When I first became ill and was searching for a doctor I briefly saw a Rheumatologist who kept insisting that memory loss and cognitive dysfunction had nothing to do with FMS or CFIDS. He was adamant about it. I knew he was wrong, but at the time I couldn't find any info to back me up. I stopped seeing him after my husband came with me to a visit and he confirmed that the doctor wasn't really helpful at all.

    I just wanted to be sure it wasn't me.

    Trust your instincts. Right now, rest is the only thing that is helping me.

    Good luck, Lolalee
  10. rockgor

    rockgor Well-Known Member

    that advice may apply to healthy people, but not to those of us w/ the DD. The only way you can stay out of bed is if you have a comfortable sofa.
  11. Mikie

    Mikie Moderator

    This one obviously does not understand our illnesses.

    Love, Mikie
  12. i woke up one morning different in every way.id gone to bed the night before feeling fine,but when i woke up the next day i was unable to move a muscle,i couldnt get out of bed.my buttocks had the most severe pain i could hardly bare to lay on them,but i couldnt turn over,i was paralised.i shouted for my husband to come help me get out of the bed and to please help me to the toilet.the pain was..out of this world.id never known pain like it EVER.
    well as the years have gone by and this fibromyalgia/ME chronic fatigue syndrome have progressed,im now realising this..
    something attacked me one day,out of the blue.it dictated the rest of my life for years and years..when to rest.cant do this,cant do that..cant have friends anymore coz i cant stand the busy hectic pace of socilising..

    well ive had enough of this bossy,vindictive syndrome,i hate it,and im not going to let it do what it does to me anymore.
    now i realise that to a extent it does still control me,it makes me sad,angry,takes my lifes pleasures away from me.and has at times turned me into a hermit,and a person that i hardly even recognise anymore.
    but this is what i believe has helped me in this life.
    stay out of bed...
    only go to bed if you are so ill,like migraine headache with constant vomiting,you just have to go lay down with that coz we feel too weak with all the wrenching..hope ive spelt that right.go to bed if you feel so very fatigued and just feel like your going to pass out if you dont lay down.
    but remember this..many people say a thief came in the night and stole their very identity...this thief is still lurking inside our very body,it keeps trying to control every aspect of our life,from this day till our passing.
    if we go to bed when we are in pain with our muscles,then this rest,and it could be like if you sleep for more than eight hours..this rest is when the fibro thief is going to next strike us,and take us over again.
    well im having none of this..fibro i defy you.yes im in charge from now on.
    im going to bed at a time i choose.this weekend it will be 9pm.ill read a bit,then ill listen to my relaxation tape (favourite songs of mine) and then when i feel sleepy,ill sleep.i know i will wake up at 5 am,i know this bacause its happening every morning for me now.the thief (fibro) will greet me as it always does at this time of day,and it will try to make me stay in bed,oohh the pain its so bad..well im getting out of bed fibro,do you hear me? im getting out of bed and you cant stop me,i hate you,and i am defying you, you devil.
    i will get some breakfast,,i like museli and im having it.i will watch tv for a hour,then i go to get dressed.the fibro kicks in,its trying to spoil my day,it makes washing and dressing painfully hard,but at last ive won..ive got dressed.
    now im taking a little walk outdoors with my dog,today i might walk for 10 mins,or then again i might walk for 30 mins...im incharge fibro..NOT YOU,and i still defy you, you thief.

    this thief is with me roughly 6 days a week,yes i get a bit tired of the fight,but im just so angry with this fibro and im sick of being controlled... enough is enough..
    please know that to be strong and get some sort of control back,dont stay laying in bed for more than eight hours,else the fibro will sieze your muscles up and then,end of game for another day...with fibro thief being the winner.

    kind regards
    fran xx
  13. Straightarrow

    Straightarrow New Member

  14. bobbycat

    bobbycat New Member

    Two years ago I was diagnoised with sleep apenea I could not get used to the cpap machine it was not automatic. I changed DR and I asked to go to a sleep Dr as I could afford a automatic machine and since I had different insurance I knew I would have to be tested again. I took him the results of my last test. Last time the DR. did not test me for anything but Sleep apenea. Since the last test I lost alot of weight. He talked to be awhile and he thought that sleep apenea was not my major problem and he thought it might be RLS (restless leg sydrome) which is common with FMS. So I had the sleep study and sure enough I have RLS and insomnia. He prescriped a pill for dopamaine and I am like a new person in regards to my fatigue. I use to wake up so tired it was like I did not sleep at all. Now I wake up and I feel refreshed. I wish the first Dr. would have found this. Also I no longer have Sleep Apenea.