Can't seem to get a diagnosis

Discussion in 'Fibromyalgia Main Forum' started by cmwoodward77, Sep 11, 2003.

  1. cmwoodward77

    cmwoodward77 New Member

    I am new to this board and wanted the opinion of those who suffer with CFS and FM. I have had an episode of Epstein Bar about 6 years ago when my titers were really high. I was very exhausted and weak. I now am suffering from anxiety according to my internist at Kaiser who I adore. She wouldn't classify me as FM or CFS. I ache quite a bit and will feel like I have the flu. She has run a ton of bloodwork and everything is normal. I show a past exposure of Eptstein Bar but nothing current and no on mono. I am not even one bit anemic. I am currently on Zoloff and going to see a Psychiatrist outside of Kaiser who is known for his ability to help people like me. Could I have a mild version of CFS or FM even though I don't have extreme extreme fatigue or the pressure points. I never seem to catch normal colds or flus anymore. Is anyone out there like me or am I just plain old crazy LOL. I don't know if I am just feeling every little symptom and making it worse. Thanks =)
  2. Susan07

    Susan07 New Member

    For years I "just" felt like I had the flu; all the time. I also didn't have that much brain fog the first few years. When every test has been run and they are all negative then you might get a diagnosis. And NO you are not crazy!
  3. Sissy123

    Sissy123 New Member

    to see a new doc. I realized I had this dd for along time before I was dx. We all progress at different levels so it is hard to tell right off if you have it or not. My doc, pain doc, just grabbed the inside of my leg and I screamed and she just said" You have fibro#$%^? I had no idea what she was talking about. Now I do. For years I have found out more and more about it and learned there is different levels of the illness, different degrees of pain...I have a friend who has it and it doesnt effect her nearly as often, but then again she didnt break her back either. I would keep trying until I found out what is wrong. You may have to be assertive with your docs and insist that something is wrong. You know you should feel better. Noone can tell you any different. Hope this helps. Love Sis
    [This Message was Edited on 09/11/2003]
  4. hope-floats

    hope-floats New Member

    Even though you like your internist (I liked mine too, but he didn't find out what was wrong with me), is no reason not to consult elsewhere with doctors who treat folks with CFS and FM regularly. I am wondering if you had the full spectrum of thyroid testing, including antibody titers and free T3 and T4. If not, then you want to get it, because you may have thyroid disease.

    My internist only did TSH testing and I already had hypothyroid for about 6 years. When my current doctor (a naturopathic physician) did the gold standard of thyroid tests, it turned out I had Hashimoto's Thyroiditis, Active Epstein-Barr Virus (considering you has EBV previously, have you ever have mono?), Adrenal Fatigue, and Iron Deficiency Anemia (with NO iron store). My estrogen, progesterone and testostrone hormomes were so low, they were almost non-exsistent...I was in menopause.

    Internists do not specialize in these disorders. Once your autoimmune system is compromised, there is so much that can go wrong. I'd encourage you to listen to your symptoms. You are not crazy (although we understand how you could feel like that...we've probably all been there). Pursue a diagnosis with an experienced doc. IMHO, gold standard testing was key for me to finally know what I've been struggling with for so lone.

    In hindsight, I wish I didn't continue to push myself through chronic fatigue and exhaustion. I needed to listen to my body better. My body was screaming out, "something is very wrong", and instead of listening, I just kept pressing on. This was such a bad move on my part. Hindsight is a wonderful thing!!

    I wish you luck. Keep us posted.
  5. IntuneJune

    IntuneJune New Member


    "I was very exhausted and weak. I now am suffering from anxiety according to my internist at Kaiser who I adore. She wouldn't classify me as FM or CFS. I ache quite a bit and will feel like I have the flu. "

    You don't state you FEEL anxious, if you are, explore that yourself. If it is your health ONLY that is making you anxious---well that would be normal and no amount of talking to a psychiatrist is going to make YOU feel better.

    Does anxiety make a person feel achy? You did have EB which could have set you up for developing other syndromes such as CSF/FMS.

    You like your doc, so go talk to the psychiatrist if she recommends that, but I would explore other avenues.

    Just my humble opinion. June