new here... looking for info!

Discussion in 'Fibromyalgia Main Forum' started by desbeaudry, Sep 12, 2003.

  1. desbeaudry

    desbeaudry New Member

    Hi! I am new here so bear with me! I was diagnosed w/lupus and fibromylagia about 3 years ago. I have always been told my lupus was "mild" according to my labs but my body did not agree! Recently my rheumatologist suggested that I may have CFIDS and that I should go to my primary doc to get evaluated. Well... I looked up tons of info about it and WOW! I have sooooo many of the symptoms! I had been getting so frustrated with my doctors not being able to figure this out and now there may be an answer. I go to the doc on 10-10-03 so I am trying to educate myself about CFIDS before I go so that I can better discuss it with my doc. While the info I has found has been helpful, what I am really looking for are personal stories. I mean, how did you find out? What is a normal day in your life like? Do you work, have kids, how do you function? Do you get social security disability (I personally cant work because of the overwhelming fatigue and general pain) Any input is GREATLY appreciated!

    Best Wishes
    Des

  2. no1inv

    no1inv New Member

    Hi, I also am new to this site and I also am supprised how many of my symptoms fit right into the FS label. Seems that if we keep on looking, we will find what we need....hope your answers come easily.
    BYE & GBU
    Sharon
  3. Mikie

    Mikie Moderator

    There is sooooo much overlap in symptoms that it is often impossible to discern where one leaves off and the other begins. I have both and have to say that the pain is more associated with my FMS and the fatigue and cognitive problems are more associated with the CFIDS.

    This is a great place to learn about our illnesses. Many, if not most, of us have underlying stealth viral, bacterial, and/or funal infections. Docs typically do not do these tests which must be done at only certain labs. There is an accompanying condition called hypercoagulation which causes a lot of fibrin in the blood. This produces the low-oxygen environment in which pathogens thrive. Hemex Labs does the tests for hypercoagulation and the Great Smokies Lab does PCR DNA tests for some of the pathogens like mycoplasmas.

    Many of us suffer from reactivated Herpes-family viruses such as EBV, HHV-6, and CMV. These viruses, by their very nature, are stealth and never leave the body. The best we can hope for is latency.

    I have loaded you with a ton of info here and there is a lot more in our library. Dr. Cheney is an expert on CFIDS and he has a lot of articles in our library. Underlying infections which are not addressed are probably the main reason people do not heal. I do not believe healing is possible unless they are addressed.

    Good luck. This is a great place to learn.

    Love, Mikie