update- still have cfs - but improving

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Dec 2, 2009.

  1. bigmama2

    bigmama2 New Member

    i have had my first "semi remission"! it has been for about 3 months now. meaning that- most days- i can wake up in the morning, feel rested, be up and awake all day, not feel like utter crap the whole day, and then be able to sleep at night. what i do during day is very very easy/mild- personal hygiene, keep house clean, some light exercise, errands, etc.

    this is the biggest and longest improvement i have ever had in the whole time i have had cfs.(many many years- and it was fairly severe for years) i only call it a semi remission because i still have cfs (if i do too much i still crash). i still cant work. the other day i was out and about for 5 hours then i crashed big time (i was very upset about that! because i thought i was beyond having crashes) but compared to how sick i was in the past- this is like a miracle.

    i wish i could say why i am better. i really dont know. there are many possibilities. one is that right before this semi remission started i was on anti biotics for a sinus infection and a flu. i got better after the sinus and flu.

    i neeeever get the flu- i wonder if it somehow reset my immune system???

    i get more sunlight now. maybe that helps???

    i take half a xanax every nite. maybe that is helping??

    it is a mystery! (sorry)

    anyways- just wanted to say hi to everyone and let you all know how i am.

    i am very excited about all the xmrv research. i am hoping it will benefit us.

    best wishes to all of you!
  2. mbofov

    mbofov Active Member

    Too bad it is a mystery - very interesting about the flu. Maybe it did do something for you.

    I'm going to be starting low-dose naltrexone - see lowdosenaltrexone.org to read about it if you're interested. It's suppsoed to modulate the immune system, so I am hoping (hard to hope though) that it will help. It's helped many people with FM pain and other things, MS, Crohn's disease. I don't have FM or pain, but definitely CFS, being out for 5 hours would definitely make me crash.

    re the XMRV retrovirus - I am also curious to see if ldn will help with that. We're one big experiment!

    Anyways, I'm really glad for you that you're doing better - it's nice to feel like a human being for a change, isn't it!

    Take care-