Just Starting Out with CFS

Discussion in 'Fibromyalgia Main Forum' started by kat211, Sep 4, 2009.

  1. kat211

    kat211 New Member

    HI. I am hoping y'all can help me. I have been sick for years now, I have had terrible EPV flair ups 2 times in the past 10 months. My Dr keeps telling me to rest rest and rest some more and that at our age (early 30s!) it takes more time to recoup. It isn't helping, something else is going on, I am always sick. I have already lost my job and feel like a failure as a mother and wife because of my inability to live a normal life. I have changed my diet, the nutritionist says i eat healthier than her, quit smoking and drinking (8 months now), and tried to exercise as much as my body will allow me. Taking a shower wears me out. I'm lucky if I can fall asleep with the pain. I think I have had maybe 30 good days in the past 2 years. I have made an appointment with an internal specialist who's information I got from a list linked to the CDC website. I can't get in until the 29th. Can anyone please help guide the path ahead of me?
  2. Nanie46

    Nanie46 Moderator

    Hi and welcome!

    Have you tried antivirals?

    I am passing along some other info....CFS and FMS are syndromes that Dr's say have "no known cause"....well, we know that everything has a cause, you just have to find it.

    Along with your EBV, it is possible that you have chronic tick-borne infections such as Borrelia burgdorferi (the bacteria that causes Lyme), Babesia, Bartonella and Ehrlichia).

    Many people here later found out that tick borne infections were the cause of their symptoms.

    Here is a paper you should read.....look at the symptom list on p 9-11 and the coinfection info on p 22-27.....


    The most common symptoms are fatigue, pain and sleep problems. There are many possible symptoms and people present with lyme and coinfections in different ways.

    Standard lyme tests are not sensitive enough, and miss most cases of lyme. 99% of Dr's then mistakenly rule out lyme.

    I hope you find some answers and recover.
  3. jasminetee

    jasminetee Member

    Welcome to Prohealth. Sorry to hear you're so sick with CFS. I understand how you feel as I'm disabled with it too. Mine started with EBV also. I believe you mean "EBV" right? The Epstein Barr Virus?

    I wish there were easy answers for you. I've done everything you've done healthwise but I keep getting progressively worse as well. As far as age goes, most docs are clueless about that. Many young children are completely bedridden with CFS. All they have to do is look for YouTube videos showing that or Google for it. Eyeroll. It is very frustrating. They are wrong in saying that you're experiencing normal aging processes. What a joke! My 95 year old relatives function far better than those bedridden children or than me. Those ignorant doctors make me so mad.

    I can only tell you that what's worked for me is to continue to eat as healthy as possible etc... and that's after spending loads of money on CFS "Specialists" and antivirals, acupuncturists, you name it...

    I've had to adjust my life to suit my needs. I find Blogs by CFSers on the web to be helpful in showing me that many others modify their lives too and they can still find fulfillment in their lives. I'm glad you've joined our community as it feels better to not be totally alone with this. We have a fun Chat Room here too that you can check out.

    It is possible to suddenly start feeling better so keep hope for that but plan for the worst. I wish I had better news to give you. We keep praying for a cure.