Not wanting to get out of the bed much anymore :(

Discussion in 'Fibromyalgia Main Forum' started by kriket, Jan 8, 2009.

  1. kriket

    kriket New Member

    Hi all-

    I have been away for awhile from the message boards. I have had to cut way back on my job and am getting to where I do not feel lke getting out of the bed much. My bed is my best friend. My fiance also has fibro. and we both are getting sicker. We are having a really tough time as the fibro. in both of us seems to be progressing. Just wondering if anyone out there has any advice for what to do for energy?? I am really down and this pain and fatigue is killing us. We are both struggling financially as my fiance cannot work at all. We are both thinking about filing for disability. Thanks for any input/advice/support!!

  2. PVLady

    PVLady New Member

    Well.. when you feel bad day in and out, it is not surprising you would start isolating. I went through several years of staying in bed most of the time. I have a business so had to work from bed using the phone. If I tried to function like others I would have so much pain and get really sick all over.

    In my case I discovered one problem that was aggravating my fibro and pushing me over the edge. After to going to the doctor for several years complaining about digestive problems, he never tested me for gallstones. Sure enough, I was loaded with them. By the time it was diagnosed I was in the ER twice a month. Since the gallbladder was removed in Nov 2006 I am much better in every way. It took about a year to really get better because I was sick for so long.

    The one drug I have been on for over 3 years that stopped the fibro aches and pains is Subutex. You dissolve it under your tongue. It is classes as a mild opiate but much different. You never develop tolerance or the other side effects. I have been on the same 16 mg day for all this time. I never had another "bed" day after starting it.

    Subutex is prescribed by only a very few doctors who understand how it helps fibro. My pain doctor has 20 fibro patients on it. All I can say is, it works.

    Are you both seeing a doctor on a regular basis? If you are not getting proper treatment maybe you should try a new doctor. It is so hard to find the right doctor but once that happens, things get better.

    I hope you feel better soon....
  3. Janalynn

    Janalynn New Member

    I have gone through phases where every free moment is spent laying down.
    I HAVE to work - absolutely no choice. My husband lost his job and I can't lose my home or other things. I am fortunate that my Dr. prescribes medication that allows me to at least get a break from the pain a little bit. I do have problems with energy and motivation to do anything.
    I know it sounds crazy, but I realized the other day, that the more I force myself to do, the better I feel. That does not mean overdoing anything that will tax my body. Accomplishing something, anything has helped my mind.

    I do not think I could/would feel any better if I lived with another person with the same condition. Yes you would have incredible compassion and understanding, but for me personally, I'd have to be careful not to fall into the 'we both feel like crap" - no one can pick up the slack for the other etc. I'd have a harder time motivating myself to do anything. So kudos to you guys for taking care of each other!

    Do you have support from a good Dr.? How about emotional support from family or friends? Are you on any medication (whether conventional or non?)

    I'm sorry you're suffering so with pain and fatigue. I do think most of us have been in that position at one time or another. Frankly, it sucks!

    It's hard to stay "up" when you physically feel so "down". For me, it's like the chicken and the egg. Which do you deal with first. But you probably need to get help in one of those areas and hopefully the other will follow..

    Not sure if that is one bit of input or advice, but you do have support here!