Oh how I Wish There was a board for ppl that are bedbound!!!

Discussion in 'Fibromyalgia Main Forum' started by ilovepink4, Mar 19, 2011.

  1. ilovepink4

    ilovepink4 Member

    I am mostly bedbound/homebound. I find that comparing my life to someone who is still able to work really is hard to swallow. I want to share coping ideas and make some friends that understand what it is like. Anyone else feel this way?

  2. victoria

    victoria New Member

    I have a friend who spends a lot of time on secondlife, he has a job that requires him to be onsite but with nothing to do about 18 hours/day. While he isn't disabled, he talked to a lot of people on that site, he said the vast majority were people who were disabled. Just a thought.

    Also did a quick search.. while this isn't a forum, it is a blog:
    contributed to by disabled people

    There's also
    which apparently also has a FB page.

    Maybe if you contact or search through these, there will be more... I am betting there are...

    Hope that helps some.
  3. victoria

    victoria New Member

    also Mojoey and another member started Healkick:
    Long-time Prohealth member mojoey (Joey Tuan) has created Healkick, a group that aims to provide a medical, social, and professional network for 40-and-under young adult patients with neuro immune disease (ME/CFS, fibromyalgia, chronic lyme, atypical MS, MCS, and mold illness.)

    In order to join, please go to groups.google.com/group/healkick
    (you'll need to sign up for a google account)

    whole post about it is here:

  4. ilovepink4

    ilovepink4 Member

    I will check them out.....we all have the same or similar diseases but they look so different for each person....being in bed while parenting, and husband is out of town, have a disabled adult daughter living with us that needs care day and night, shaky marriage, pets.....so many obstacles to getting things done while feeling so miserable....

    Seems this is progressive, too....i have my pain under decent control unless i do something....mylimit out of bed is 1-3 hours and i will usually need pharmecutical support to make it that long.....then when i lay down, the pain and fatigue seems to wash over me in waves.....and takes a while to get it to behave....

    i will look up these sites and see if I can find support for living in your bed....

    Thanks again....PInk
  5. boysmom2

    boysmom2 New Member

    I know how you feel. My fibro is severe. I take a high strength pain med that is hard to get that I'm not likely to get refilled, gee, because it actually works, but my fibro docs are too scared of it. But they'll prescribe other pain meds that are a waste. I've found fibro docs, I live in Dallas/Ft. Worth don't have a clue and I don't think they know a darn thing about how to help us. It gets so bad that I cry by the bedtime comes around because I'm only 49 and have a six year old son and I don't know how I can live this way. They say fibro won't kill you, but it kills parts of your life. I'd love to get in a clinical trial but can't. Who are they testing, people with minor pain. I've tried lyrica, cymbalta and the other fibro drugs. They don't work or won't work very long. The brain tricking drugs just end up altering your moods eventually.

    I've been battling five years, waiting hours for doc appointments with so called experts and right now I think, we the fibro sufferers know more than the docs. I think we need to get loud, become better advocates for ourselves and quit letting doctors letting us suffer. Most of them are men and most women are fibro patients. Put them in our places, they would be screaming in a second. This is not to dismiss the men who suffer who I think would agree the medical community doesn't suffer so they don't know. We have to fight until they listen and take action to get the same research attention as diseases that cause they kind of pain.

    Janet in Frisco, Texas