Diagnosis FM PBC What can I do about FATIGUE?

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Oct 2, 2006.

  1. TerryS

    TerryS Member

    I've gotten a positive diagnosis of FM from the rheumy. He referred me to a GI doc for positive anti-mitochondrial antibodies but negative liver enzymes.

    Just got back from the GI doc. I'm in the "preclinical" stage of primary biliary cirrhosis. That's good news because it means I have no liver damage yet. We'll just keep a check on my labs every six months. I also have irritable bowel syndrome.

    So -- the GI doc says that my extreme fatigue is most likely solely caused by the FM and not the PBC.

    The fatigue is debilitating. The pain is awful, too, but usually isn't horrible, or at least not until the late afternoon/evening.

    My arms and legs are exhausted and weak. I can't hardly hold a hairdryer to dry my hair. I have to keep putting my arms down. I feel like I did when I was recovering from rheumatic fever or cytomegalovirus.

    DOES THE FATIGUE EVER GO AWAY??? OR IS THIS HOW IT'S GOING TO BE THE REST OF MY LIFE??? I've been out of work 6-1/2 weeks now. I don't know what to tell my employer. I've had some halfway decent days, and I've had some HORRIBLE days...it just goes up and down like a yo-yo.

    TerryS
  2. FMsolider

    FMsolider New Member

    Terrys, Fatigue is a major part of this DD. It will never go away! There are things you can do to combat it, as with the pain but,you will never be 100% again. Eating lots of raw vegs. and fruits help. And in general there are a lot of foods that can give energy. Also, some supplements. Proper restful sleep will also give you more energy. This yo-yo feeling you described is how I feel too. And most of us I would guess. Sometimes, no matter what you do - pain and fatigue will be there! My suggestion is to look into some holistic remedies for energry.
  3. TerryS

    TerryS Member

    Thanks for your reply. I'm just SO frustrated! Intellectually, I understand it. But emotionally...I just don't get it. How can a person stay so fatigued and in pain for weeks at a time?

    I've been to a number of different specialists. I keep thinking one of them will say "oh, this is what you have, this is what you should take, and it will go away in a few days!"

    To think I have to live with this the rest of my life...I'm having a hard time adjusting to that idea.

    TerryS
  4. Marta608

    Marta608 Member

    Sorry, but I just got as far as the first reply. I refuse to believe that the pain or the fatigue will never go away, that we just have to "get used to it". This is not to say that we should be in denial of where we stand now, just that we need to have hope.

    There are many here who have been where you are, Terry, and are now much improved. Read as you can and consider what might help you.

    What a beautiful woman you are, FMSoldier! Sorry you're so discouraged. Terry, you're pretty too although you're legs a kinda short....

    Hugs,
    Marta

    [This Message was Edited on 10/02/2006]
  5. FMsolider

    FMsolider New Member

    Sure, does sound like you are having a hard time accpecting and adjusting to this crappy illness. I understand so much because I just recently,"got it," if that makes sense. I can tell ya that with proper care this illness can be managed. You have to take it day by day and not think too far ahead when it comes to the pain/fatigue...or you'll end up with a fun panic attack. Things will get better - and soon you will know exacatly what you need to do for each symptom that pops up. There will be days where it is not so bad. Allow yourself to rest, don't fight it. Has your doctor put you on sleep meds.? I feel that good sleep is the root of this illness and the root of healing.
  6. FMsolider

    FMsolider New Member

    I think I came across wrong...I do that a lot! When, I say these horrible symptoms will never go away - it doesn't mean I do think they will get better. I do feel however, that the goal of being normal or how you were before this illness is not a reachable goal. There has to be a small anount of acceptance here, not denial of the facts. I was trying - in my own way to give you hope...I have hope for myself and all of us! Lol - I do come off as quite a downer sometimes. Sorry!
  7. TerryS

    TerryS Member

    Marta - Yeah, my legs are a LITTLE short, but my EARS make up for it!!!

    Marta & FMSoldier - I have yet one more doc visit to make. I'm seeing an infectious disease doc this Wednesday...just need to make sure we've ruled out all else. It's obvious to me I have FM; but, I just wish someone would tell me I have "x" and it'll be gone in a few days/weeks whatever. I guess I'm grasping at straws, BUT YOU NEVER KNOW!

    I did have a reactivated Epstein Barr infection when I first went down with this stuff, so who knows!

    TerryS
  8. snooker11

    snooker11 New Member

    I've had fibro for 2 1/2 years now, although I may have had it for even longer. I am overall, getting better, however there are lots of ups and downs and lots of compromises one has to make. It is a difficult balancing act. be kind to your body, push yourself but don't push yourself too much, go slowly, listen, rest frequently....fatigue/sleep is a constant battle. I too think sleep is a very important part of managing this illness. You must be getting good, deep sleep every night. That is the only way your pain will feel better.

    check out my bio for more info.