New to Fibro

Discussion in 'General Health & Wellness' started by Tizz, Jul 23, 2010.

  1. Tizz

    Tizz New Member

    Actually, that can't be true. If this is all fibro then I've had it for over 7 years, it's just been misdiagnosed. (I know that's true for a lot of people.)

    Right now I'm just kind of stunned. I wouldn't say I'm in denial about having a painful chronic illness that *won't* kill me - fibro is actually less awful than some of the other possibilities my docs have investigated. And the more I learn, the more I discover that fibro fits many of my odd symptoms that I've always hesitated to even talk to my family doc about, much less anyone else...

    I'm kind of torn between anger and confusion. Anger, because I've spent the last 7+ years going to neurologists and being told I had neurological problems. Anger, because I finally went to an uber-specialist to try to find out why my neurological symptoms and diagnoses seemed like we were trying to fit a sqare peg into a round hole. It just didn't fit... But neurologists never even mentioned fibro to me. The uber-specialist did a huge battery of sophisticated neuro tests that all came back normal (or close to normal) and then declared that there is nothing neurologically wrong with me - and my problem is "psychological". She strongly implied that she believed I was faking all my symptoms and lying to her about everything.

    I guess the uber-specialist one of those pigheaded doctors who don't even "believe" in fibro.

    Anyway, there's a new rheumatologist in town and - after I told my family doc I won't see another neurologist - she sent me to the rheumatologist to be evaluated for fibro. (He diagnosed me with the new guidelines, so I'm not sure how many tender points he found.)

    But I find myself thinking, "Now what?!"

    After all those years believing I pretty much knew what I was dealing with, and having made my peace with it, suddenly I'm starting all over again. And of course, I'm not really sure who to believe... it's all confusing. But the fibro diagnosis fits that round hole a lot better than the square peg did.

    Has anyone else here been through something similar to my experience?

    Tizz

  2. Nanie46

    Nanie46 Moderator

    Hi and welcome!

    Let me start by saying that I had a FM diagnosis for 21 years before discovering the real CAUSE of my symptoms....a chronic borrelia burgdorferi infection (Lyme disease). It is a bacteria that can cause lots of symptoms including fibromyalgia pain.

    Now you may say...my Dr tested for that and my test was negative.

    So was mine and many, many other people's with lyme!!

    Testing for lyme is VERY UNRELIABLE. In fact, Lyme is a clinical diagnosis based on history, symptoms,and exam, NOT a lab test....so if your Dr ruled it out with just a test, that is WRONG.

    In fact many, many people here on the FM/CFS board later found out that they actually had Lyme and some commonly associated coinfections like Babesia, Bartonella and Ehrlichia.

    Many people went through many, many Dr's looking for answers. We usually figured it out ourselves through research and then found a Lyme literate MD.

    Even though you may feel like you now have the correct diagnosis, remember this.....something caused it right?...and you must find it in order to recover!

    It is likely caused by one or more infectious pathogens and your Dr will not bother to look for them now that he has given your illness a name.

    Take a look at this info....this booklet contains a great symptom list and tells what diagnoses people are often given when it is really Lyme:


    http://www.lymepa.org/Basics2007v1.2Rev.pdf




    Also very important paper with great symptom list pages 9-11 and coinfection symptom info pages 22-27:



    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    Also read:


    http://www.ilads.org/lyme_disease/about_lyme.html