Newbie Here and sooooo glad to find this site

Discussion in 'Fibromyalgia Main Forum' started by Issa77, Apr 9, 2007.

  1. Issa77

    Issa77 New Member

    I just keep reading stuff and can't believe so many people are going through what I am going through.

    I was diagnosed with EBV back in October 2006 and I think I am currently going through an activation period (does that mean I am chronic?). Always tired and alot of pain - almost as if the pain moves. My doc is currently testing me for B12 levels cause she said I have some sort of aneima. The newest thing that I have been experiencing is an achy bowel - anyone else dealing with this???

    If any of you can give me any pointers on how to manage this or help to guide me through this I would really appriciate it.

    Thanks eveyone.
  2. survivor13

    survivor13 New Member

    hi there
    im a Fibromyalgia sufferer and im afraid i dont know what EBV stands for,sorry, just wanted to welcome you the site and to say there is always loads of help and support here for all kinds of conditions so i know someone on here will reply to your post and help you in any way that they can because evryone is so nice, friendly and willing to help and support fellow board members.
    good luck xxxx (((((hugs )))))) xxxxxx
  3. obrnlc

    obrnlc New Member

    hi issa77!
    sorry i can't help ya w/question, although alot on here probably can and will--type "question about EBV" in the title and more will respond that know about it. (click "edit" under your name)
    i just wanted to say welcome to the board!
    good luck with your search--L
  4. Engel

    Engel New Member

    Welcome Issa.
  5. CockatooMom

    CockatooMom New Member

    Welcome Issa!! So glad you found us.
    I cant answer your question either, but just wanted to say hello!
  6. findmind

    findmind New Member

    Hello, Issa. I began my illness with EBV titers being very high and they have stayed that way for 18 years. Yes, I think it is called chronic EBV now. Drs I have talked to say they are just beginning to be aware of it as a chronic, instead of short-lived illness.

    Welcome to the board, so glad you found us. I am glad your dr. is exploring other avenues such as B12 (many of us are low in it).

    If you can get on an antiviral asap, I think you might prevent further complications from EBV. See posts about Valcyte and valgancyclovir.

    EBV can be dangerous; it has a link to nose and throat cancer, so be vigilant for any problems in that area. It can also cross the blood/brain barrier and cause neurological problems.

    Many of us with CFS have bowel problems, either Irritable Bowel Syndrome with constipation or diarrhea or alternating. There are lots of posts here about IBS.

    Any questions, do a search above, and you'll see the discussions and learn a lot!

    Please eat well, get lots and lots of sleep and try to move around some each day to keep the circulation going as much as possible. I do not recommend aerobic exercise with CFS; many studies say it hurts us.

    Whatever happens with your illness, we will be here for you, so write us anytime about anything....we care!

    There's always hope!
  7. blkkat

    blkkat New Member

  8. annaleeb

    annaleeb New Member

    Hi, welcome to the forum. I am new here also, just a few days, I also am so happy to have found this site, some much info, and people going through the same issues as myself. It is so wonderful to have a support system for the nasty illness. I am truly gratefull for this place to come too! I am sure you will love it here as well.
  9. Issa77

    Issa77 New Member

    Thanks so much for the welcome.

    I am aware of EBV and the link to cancer and that has caused me alot of distress because my grandfather just died of lung cancer and that was very hard for me. In fact I really remember feeling sick right after he died so that event sorta "kick off" my EBV.

    I think about the cancer connection everyday and it it really causes me alot of mental and emotional turmoil.
    I have really been suffering from depression and anxiety and that has really been a challenge because I was never like this before.

    My symptoms include gastric/bowel issues, lymphatic congestion (usually on the left side and used to affect my breast but not too much anymore), tongue issues (feels like it is too big for my mouth and sometimes it feels numb), joint pain, yeast issues, pelvic pain, vision issues (blurry vison sometimes) achy lymph nodes (not so much anymore), not sleeping well (when this first started couldn't sleep on my own at all), my throat used to really hurt but not so much anymore.

    I really need to find a new doc cause my current doc has been horrible. I had to fight for a diagnosis and she didn't even end up running the tests - a er doc did. I had to fight for two months to find out what was wrong with me. She initially told me to go home and I would feel better in a week. A couple of weeks later when I was in to see her and I mentioned the EBV she then contridicted herself by saying "that stuff can hang around for months". Needless to say I was so ticked so I sought out a naturopath and she has been helpful but she is in another town and when I go to see her I have to take off a half day. I am going to see a Homeopath on Thursday and I know it won't be a cureall but she may be able to help modulate some of my issues. However, I really need to find a new doc - if anyone has any reccomendations on what to look for in a doc and what questions to ask them I would greatly appriciate it. Has anyone seen an enviromental doc??

    Some things that help me with pain are breathing excercises and skin brushing.

    Oh and along with the EBV I also have PCOS.

    Okay guess this is long enough.
    [This Message was Edited on 04/10/2007]
  10. tjsmom

    tjsmom New Member

    Welcome Issa! TJ's mom here - my name is Kim - I am fairly new the site as well, and so grateful to have found it!
    My 12 year old son was FINALLY diagnosed with CFIDS on Feb. 28 this year - how we got that is a long story - and in some of my earlier posts - just search for posts by username or title or subject and you'll find tons of info. on whatever you are looking for at the moment.
    TJ had EBV induced Mono three years ago - and has really never been fully well since then - up and down, but mostly up until this year - he has been very sick since October.
    Now we are on a road to treatment and hoping for recovery.
    We found his new doc on the "good doctor list".
    Best wishes for your journey.
  11. Issa77

    Issa77 New Member

    Thank you so much for the welcome. I have EBV not FM but I do deal with a great amount of pain so your input is very valuable. Right now I am dealing with alot of pain in my low back buttocks area and it is driving me crazy!!! It hurts sit up and lay down. I am off work today and I was off yesterday too. A little worried about losing my job :(
  12. poeticbobbi

    poeticbobbi New Member

    I have severe irritable bowel and have found that herbal teas like ginger,chamomile or peppermint are helpful and the taste pretty good too.

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