Anyone else had Mono (EBV) prior to FM/ME/CFS ?

Discussion in 'Fibromyalgia Main Forum' started by margo60, Jun 27, 2008.

  1. margo60

    margo60 New Member

    I was just reading the other thread on EBV and realizing that some of us indeed had Mono before we came down with FM/ME/CFS.

    About 15yrs ago I came down with Mono as an adult and I have never felt the same.
    I was a very healthy person prior to that with great immunity... then all went down hill with major muscle and back problems and finally dx with FM/CFS

    I'm sure there are many of us on this board with the same story.

    Just wondering ..
    Margo :)
  2. simonedb

    simonedb Member

    I had it as a teenager and it seemed to come back like 3 out of 4 summers back then, at one point they said it was an enterovirus when symptoms recurred
    then I seemed to get better for 10 years until a surgery put me past the point of no return, long story short.

    I have been told by a cfs doc that it could definitely tie into getting cfids years later.
  3. k5334

    k5334 New Member

    I had mono when I was 18 and I have never been the same since, that was 20 years ago. I was diagnosed with Fibro 5 or so years after the mono.
  4. acer2000

    acer2000 New Member

    I had a mild case of mono in college. Only last a couple weeks. Recovered completely. I still came down with CFS a few years later. It was triggered by a yet undiagnosed illness...
  5. Granniluvsu

    Granniluvsu Well-Known Member

    Hi Margo,

    I ws dxed with EBV many years ago when I was in my 40's and then continued to have alot of the symptoms, aches and pains, fatigue etc. and was finally dxed a couple of years ago. I've only had it about 25 years or so !!

    At that time they knew nothing. At lease now they know a little bit more and STILL looking for a cause and cure !

    YIKES !!

    Blessings and hugs. Granni
  6. ladybugmandy

    ladybugmandy Member CFS started with mono over 15 years ago.

    mononucleosis permanently damages the immune system.

    have any of you tried antivirals?

  7. brainfoggy

    brainfoggy New Member

    Yes, many of us can say mono triggered our CFS. I got mono last summer and haven't been the same. Looking back, I started having gradual problems a few years even before this. Adrenal exhaustion, thyroid, IBS, insomnia, very high stress... so while mono is a common denominator certainly is worthwhile to look into other things too.
  8. karenlisa32

    karenlisa32 New Member

    Hi, I'm new to this board and recently diagnosed with Fibro. I got mono when I was in my mid-20's. I'm 40 now. I was so sick with mono that I just wanted to die. Makes me shudder just to remember it! Anyway, I was out of work for about a month and weak for a long time after that. I was also very healthy before I had mono and seems like I've been exhausted ever since (or maybe that's because of my kids).
    [This Message was Edited on 06/27/2008]
  9. ladybugmandy

    ladybugmandy Member

    i actually had stress and IBS problems before the mono too.

    they say there are many complicated host-virus interactions with EBV.

    i wonder if there is any real hope for relief in our lifetime....

  10. Dee50

    Dee50 New Member

    oh ya mono as a teen was the begining of my CFS things (total cashes, fevers,extreme fatigue,ect...) and emer. surgery (ruptured appendix) a couple of years ago was the begining of my FM things (extreme body pain that is = on each side of my bodyparts, brain fog, more fatigue). I have been bedridden for many months at a time off and on for years.
    [This Message was Edited on 06/27/2008]
  11. moreinfoplease

    moreinfoplease New Member

    at age 16. I was really sick, but being a junior in high school I pushed myself to get back to school after 2 weeks.

    I lived in San Francisco, and wonder about being so near the lake tahoe cluster that occured in 1984-5.

    I don't know if I can trace my current illness to that case of mono or not, but would like to know.

    I was ill in March, and that entire spring I continued to be very sick. I was sick at the prom, but went anyway. I was had coughing fits so bad tears streamed down my face and I had to leave the classroom during class.

    But I kept pushing through.

    I wonder if that illness left lasting damange, and at some point I couldn't keep going.

  12. victoria

    victoria New Member

    I was positive for it for 1 year when I was 18-19... complicated with hepatitis A and meningitis (the type associated with mono)... it was a helluva year for me, and back then nobody thought of vitamins and there was nothing to do but rest - hard to do for a college student.

    Now I think it could've been cytomegalovirus (CMV) &/or mono, however, as the tests back then (1970) couldn't differentiate.

    Interestingly they are very similar, but the main clinical symptom that is different is that CMV is tonsilitis with no pain - what I had, no sore throat, just couldn't swallow any food by the time I went to the doctor.

    However, interestingly, 2 weeks before I ended up in the infirmary I'd gone camping in the ozarks, got a tick bite, it was on me likely for a couple of days on my back - never saw or felt it til I got back. And now over the past 20 years, have had many tick bites as I live in the country.

    So who knows what may all have started back then AND since, ticks are dirty critters and my immune system was certainly extremely 'down' - I've had my ups and downs over the years ever since, but major one has been the past 8 years in particular.

    And as we all know, the herpes family of viruses NEVER go away... the high rate of repeated shingles from herpes zoster/chicken pox with our population certainly shows that.

    There are so many things that are good at hiding out from and / or suppressing our immune system, my opinion is that we have more than one or 2 'things'............

    all the best,

    [This Message was Edited on 06/28/2008]
  13. victoria

    victoria New Member

    thanks for the link.......... after reading that, I hope what I had WAS CMV. But I've a feeling anyway that CMV does its own long-term damage, tho maybe in a different way.

    I wonder now if there's any testing available that would show just what I DID have so many years ago... have never seen anything that says that it could tho. Sigh.


  14. znewby

    znewby Member

    Read somewhere about 13% of people who get mono never fully recover.
  15. Leaknits

    Leaknits New Member


    According to "Osler's Web," a great book I keep buying in the used book section @Amazon because people uh "borrow" mine, EBV causes mono.

    I dunno. A long ago dr ordered EBV test after I nagged him to do SOMEthing to help me figure out what was wrong with me. According the the results he wouldn't let me read, I tested positive for EBV antibodies AND mono.

    Yeah. "And" mono. I've learned since then that it's felt practically everyone in the world has been exposed to EBV so will have the antibodies.

    Current dr, without even checking out trigger points, informed me some months ago "You have CFS and Fibromyalgia."

    Ooookay, that's his opinion and he may be right. Another dr was totally convinced that CFS and Fibro arrive simultaneously in a person. Another opinion, but I don't think that one's right.

    So I guess my answer to your question is "Maybe." I'm sorry I just don't know!

  16. margo60

    margo60 New Member

    I am not surprised at all of how many of us started or had Mono sometime in our ill history.

    Just now putting the puzzle together and it all makes sense to me.
    Until two months ago I thought I only had FM, but now I'm convinced I have CFS as well .... lucky me.
    So 13% of people with Mono never recover ... I'm part of the small percent again ... like with my blood type ...
    "B negative" I understand not too many of us have it ... lucked out again :)

    In the years that followed Mono I had constant sore throats "for no reason" or so I thought and was walking around with scarf on my neck even in the heat of the summer. My coworkers were making fun of me but I just said it was my fashion statement :)
    Even now if I get over tired my throat starts to hurt ... is it sign of the virus getting more active ?

    Went from Dr to Dr with no result ... Tight neck and back muscles followed to the point that I felt I was kept hostage by my muscles but looking back it did not feel like FM ... yet. And was soooo tired all the time.

    Then eight years ago I made a bad move and jammed my sacroiliac joint and felt like somebody broke my body in half. The pain was so intense that it put me in shock.
    That year I had over 100 Dr and therapy appointments.
    The strange muscle and body pain of FM showed up as well.

    This episode repeated itself several times in the following years along with "charlie horse" like muscle cramps in the large muscles of my neck ... just like someone was drilling into my brain without putting me under.
    With each episode the FM pain got worse and worse.

    Two years ago I came down with a mild looking case of Shingles which was a complete surprise to me ... I don't remember having Chicken Pox. The Shingles looked mild but still left me with a small amount of nerve pain showing up here and there.

    As they say the rest is history .... I can only hope that it will end well :)

    Blessings to All
  17. margo60

    margo60 New Member

    Hello Sue,

    Thank you for the link... it is great read !
    I had no anti viral treatment yet, but I may consider it in the future.
    I have been reading your posts they are very helpful.
    Thank you :)


    BILLCAMO New Member

    there may be some kind of connection.

    In my case , I had Mono in 1967.

    In 2000 the Mack Trucks of CFIDS/ME and FM found me.

    I also have severe neck and back problems. Since I've noticed a lot of people with these DDs also have these problems , I think there may be a connection there too !

    It often seems that there are more questions than answers...

    Blessings ,

    [This Message was Edited on 06/28/2008]
  19. margo60

    margo60 New Member

    I have read somewhere that some back, and neck problems are actually the early signs of FM.
    I'm thinking maybe the ones that have no other dx for hurting.

    If I think back my back pains started in the late 80's, not too bad, but by the early 90's was getting worse.
    But backs can hurt for so many reasons and so many people have it... hard to tell sometimes.

    Take care,
  20. ladybugmandy

    ladybugmandy Member

    my neck pains started soon after mono and i knew this meant i had an ebv-related brain infection. it was a different kind of pain and cramping in the back of my neck. some days, i could barely get out of bed because if i moved my head at all, it would kill.

    of course, no one listened to me back then...