How do you know you have CFS too?

Discussion in 'Fibromyalgia Main Forum' started by kaymac, Apr 20, 2009.

  1. kaymac

    kaymac New Member

    My PCP has always talked to me about FM/CFS. Diagnosed in 2002 and has always said my low grade fever and fatigue is from the CFS and the pain and other symtoms primarily from FM.

    How were you diagnosed with CFS? It just seems odd that I was just told I had both, no test or anything to confirm it.

    So when you fill out history info at doctor offices, etc, do you list CFS as a disease or health condition like you would FM?
  2. ladybugmandy

    ladybugmandy Member

    i knew i had CFS because i had severe brain fog and it came on after a viral infection. also, my RNase L was through the roof.
  3. spacee

    spacee Member

    Has your doc don't any blood work at all?

    CBC with Diff
    Sed Rate

    Tested your trigger points?

    These are pretty basic. And really should be done just to see if further testing should be done in the autoimmune area (Lupus).

    Even that is iffy cause I have CFS/FM and elevated ANA and sed rate.

    I will be very honest with you. Some docs give these diagnoses because something is going on that may not show up for 10 years.

    I put the CFS diagnoses down and every doc I have seen is quick to inform me that he/she knows nothing about it. OR, they think that balancing my thyroid or hormones "will make me feel much better" and it doesn't. YET, it does for some so can't rule that out either.

  4. jasminetee

    jasminetee Member

    I was diagnosed with Chronic Epstein Barr Virus by the 6th doctor I saw in a row because none of them could find anything wrong with me after I had come down with a "flu" that wouldn't go away. This 6th doctor took one look at the size of my medical records and said, "You should be 40 years old with a medical problem to have medical records that thick." I was 20 at the time.

    He read them, came back in the room and felt the tendons on the left side of my neck and gently pushed and I jumped out of my skin in pain. I'm all, "What was that?" and he told me he was very sure that I had what they were then calling Chronic Epstein Barr Virus which later became CFS.

    That was in 1985 and I started reading everything I could get my hands on about CEBV and then CFS when the name changed. There were a lot of pamphlets about it as well as books. I remember reading about them changing the name and thinking that was interesting. I got these materials at local health food stores. We have a lot of them where I live in the San Francisco Bay Area. I also talked to people about it and met several people who had also gotten it the same year and we discussed how they got it and they had come down with the same symptoms I had.

    Since then I've been researching it non-stop and I clearly see every day that I'm a textbook case for it.

    I didn't get full blown Fibromyalgia until after I sprained my low back in 2000. Suddenly I had 18 out of 18 tender spots and very odd symptoms of major pain in ways I never had before and my digestion and elimination became completely messed up as opposed to messed up a lot of the time like when I only had CFS. So for me, there's just no question about what I have.


    [This Message was Edited on 04/21/2009]
  5. TigerLilea

    TigerLilea Active Member

    My doctor did testing to rule out any other illnesses before diagnosing me with CFS. I was actually diagnosed as having Post Viral Fatigue Syndrome. I had had a cold for six months as the result of having two undetected infected teeth.