I'm not tired but I have no energy - can you relate to this?

Discussion in 'Fibromyalgia Main Forum' started by Tantallon, Dec 29, 2005.

  1. Tantallon

    Tantallon New Member

    Tried last week to explain this to my doctor, he keeps on using the term tired - but I'm not. All I can explain is that I physically cannot move my legs any faster than I do and I literally could not run or even walk quicker to save my life.

    I think eventually he understood what I meant but I can't help getting annoyed when the word tired is used.

    Can anyone relate to this?

    Sue
  2. zerped

    zerped New Member

    I think a lot of us can relate; I have the same problem with "dizziness" vs. "vertigo." We always think that doctors must use the same words the same way we do, when in fact, my opinion is that dr.'s wil ALWAYS choose a different meaning than the one we're used to! (when we see things like "post-exertional malaise" we know that they went to medical school)

    What I've been doing is training myself to use "fatigue" instead of "tired." "Tired" means sleepy and time to go to bed. In my opinion, the dr. needs to know that something else is going on here. I describe the symptom in my case as "a feeling of all energy draining out of my body, like air out of a balloon or sand going to the bottom of an hourglass." At that point the dr. can stroke his/her chin and nod, saying, "Ahhh, post-exertional malaise!"

    P.S.----My understanding of these diseases is that for a brief second or two, we would return to "normal" just long enough to get out of the burning house, or get out of the way of that speeding car. My dad had Parkinson's, and that was something that could happen with him; go from slowly shuffling along to a quick hop, skip, and jump to get out of harm's way.



  3. tansy

    tansy New Member

    is a misleading term for what we experience; even fatigue is a woefully inadequate.

    My sister and mother are affected by hypermobility syndromes, they both experience similar fatigue and get tired easily. I have this too; the lack of energy at a cellular level associated with these DDs as well is not the same, I soon recognised the difference.

    Maybe passing on a some of the info on post exertional malaise would help your doctor understand the differences.

    love, Tansy
  4. CinCA

    CinCA New Member

    I've felt like this to a degree a lot. Just very worn out/exhausted more than "tired". I get annoyed when people (like my husband) say, "Oh, just take a nap," because it's not like I am TIRED and could sleep if I tried.

    I've had decent luck (sort-of) with my doctor using the terms "physically exhausted" and "dragging" to explain similar feelings. I tell him I can't think straight and want to just sit and zone in front of the TV or computer all day, but it's not like I can fall asleep. Fortunately, I don't get those days as much right now.

    I hope you are feeling better soon or you at least get some more understanding from your doctor.

    C.
  5. lenasvn

    lenasvn New Member

    said everybody comes in and says they feel fatigue. I had to go into detail too. I don't think anyone gets it unless they accually lived it. Not even a doc. They seem to think were lazy or faking it. I wish!
  6. angeljoe

    angeljoe New Member


    Sue you are right on track with me. I feel this way all the time. I think the chronic fatigue is worse that fibro somethimes because of the exhaustion feeling. Every single time I mention this my husband says go take your daily nap. (which really pushes my buttons)

    My doctor (acts) seems to understand when I describe this feeling to him. He has raised the dosage on my provigil several times due to this discussion. He also checked my thyroid levels. I have hypothyroidism and that can mimic chronic fatigue.

    Do you take provigil? It does help somewhat.

    Angela
  7. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Doesn't that come closer to how we really feel? It's not being tired, not so sure there is any difference between tired or fatigued either, it's definitely malaise.

    I know all the different flavours of tired, exhausted, wiped out, and too weak to move. I'm tired today, normal garden variety tired, because I didn't get enough sleep. I still have energy today though, so far, one of my better days. And this is totally NOT what you are talking about.


    Jeanne


  8. Tantallon

    Tantallon New Member

    I thought it was just me that got wound up with the word tired being used to describe what we suffer from and yes the 'why don't you go to bed for a couple of hours' pushes my buttons too.

    I'm going to look up the word malaise as I'll be honest I'm not sure of its exact meaning.

    When I hsve a blood test done it's always TOTT (tired all the time) for the reason, I wouldn't mind so much if they put a Y on the end! LOL!

    Cheers everyone
    Sue
    [This Message was Edited on 12/30/2005]
  9. ksp56

    ksp56 Member

    I have been in an awful flare for a week. My body has hurt more than words can say.

    However, when I am not in a flare, the fatigue is overwhelming. It is as bad, if not worse, than the fatigue I felt after chemo treatments. I did not think anything else could be as tiring. I was wrong. If your doc has any experience with chemo patients, maybe he would understand better. Just a thought..

    Tired is not the correct word. It goes way past tired....

    You are not alone, Sue. Very few understand other than us.

    I relate!

    Kim