Question from a

Discussion in 'Fibromyalgia Main Forum' started by trevorandamanda, Apr 12, 2006.

  1. trevorandamanda

    trevorandamanda New Member

    Hi group!

    I found this page a few days ago and have been reading through it as much as I can. I am currently not diagnosed with CFS but this keeps popping up as I search more and more on what could be ailing me.

    I am 26 y/o and usually healthy as a horse. I was told I had mono November before last (after wanting to fall flat on the floor at work...). I don't feel like I've ever recovered and I continually feel worse.

    A few months ago I started getting headaches daily - this is new for me. The fatigue seems to be the worst part of it. I am married with a 2 y/o and feel I should be able to do certain things during the day but often I will just lay on the floor and tell my husband my body just won't let me do anymore. He thinks I'm crazy (never a hint of mental illness...well, anxiety problems when I was a middle schooler).

    I'm in a fog on my bad days. I feel like I could just crash on the floor. I don't have any of the muscle or joint pain... My eyes burn and water a lot, which is also a new symptom (and I don't have any allergies).

    I have "suspected endo". I was put on bcp when I was 15 and this relieved my symptoms almost entirely so have never pushed for an official diagnosis.

    I am hypoglycemic but I don't believe this is causing the fatigue. I've had problems with yeast in the past...but currently not having any issues.

    I guess I'm just posting on some insight. I've mentioned that I felt like I still have mono off and on to my dr. but he's never really made it an issue. I finally went and saw him specifically for it in December along with the headaches.

    I am currently on Tofranil 10 mg for what he suspects may be a sleep problem (rather than a sleep study) - not sure I'm convinced. I have no problems sleeping...I could go to bed now and sleep until tomorrow morning...it's just unrefreshing sleep.

    I just started indomethicin (sp?) last week after a severe headache he diagnosed as a cluster headache (after my research...I disagree with him). I took it for a few days and then decided not to...maybe that's not a good idea but I just didn't see the point. I was taking it as a preventative for the cluster headaches and I don't think I have them.

    I've always had a good relationship with my dr. but as I reread this post it seems I don't fully trust him. I guess it's just that his diagnosis aren't always in line with what I read about certain disorders. Anyways, just wanted some insight. Thanks a bunch.

    ~Amanda

    Edited to fix for paragraphs - sorry I just got so in to it I kept typing...I've never really wrote it all down like that (and my previous job was a technical writer!). I think I hit a sore spot on the board.. :-(
    [This Message was Edited on 04/13/2006]
  2. Katee32

    Katee32 New Member

    A lot of what you just wrote perfectly describes me also.

    I'm undiagnosed also and just joined the board yesterday. So, I really am not much help but there are a lot of wonderful people here who may be able to give some insight.

    Welcome to the board and I hope you get some answers!
  3. Jana1

    Jana1 New Member

    trevorandamanda,

    What you typed just seems so so typical for CFS and even FM.

    I am glad you found this board so you have an open mind, and also some insight to what might be your final diagnoses.

    I encourage you not to stop exploring all possibilites so you and your doctor will be completely satisfied when a diagnoses is reached.

    Katee32, I mean this for you too!

    Jana
    [This Message was Edited on 04/12/2006]
  4. NyroFan

    NyroFan New Member

    Amanda:
    It is not unusual to go from doctor to doctor to get a correct diagnosis. And many of us had been mis-diagnosed.
    I would keep on your search for info and , of course, stay here with us.

    I go to a rheumatologist who treats me for FM/CFS. He is terrific.

    Welcome.

    nyrofan
  5. Yucca13

    Yucca13 Member

    Hi Amanda,

    I was always a fairly energetic person until I contracted mono when I was 18. I don't know if it was coincedence, but shortly after that I had many back spasm problems and also a ruptured disk that was removed when I was 28.

    I have an innate feeling that the mono kicked off some kind of chronic fatigue problem for me. It isn't something that can be verified.

    I do know what you mean about 'unrefreshing sleep'. I've been using Provigil lately (a medicine originally formulated for narceleptic people). It helps to keep me going without a big rush.

    I have periods of weeks when headaches are a real problem. The medicine you mentioned that he prescribed for headaches is an anti-inflammatory one. Hope it helps. Guess mine are vascular because Imitrex is the only thing that really works.

    I remember how difficult it is to take care of children when you are feeling so fatigued - not a whole lotta fun. I wish you the best in getting some answers.
    Val
  6. code34me

    code34me New Member

    I have been diagnosed with Fibromyalgia for about 6 years now. My cardiaologist does not believe in it so tested my blood for the fatigue I have. He told me the lab results showed a high Epstien-Barr virus level (Which is the same as Mono) and that causes Chronic Fatigue Syndrome and there is nothing I could do for it, I will just be tired when it flares up. So I left with the diagnoses. My Primary doctor laughed when I told her, she could not see how he could agree with CFS but not FM? She is a great doctor I am lucky to have found her!

    Anyways the fatigue and headaches are awfull for me. I have alot of stiffness and pain when I wake up in the morning. I also have a 3 year old son who wakes me up and says "Mommy it morning!!!!!" My day if off to a start then "Mommy i got to go peeee!!!!" "Mommy I am hungry!!! all within 1 minute! I also have a 13 year old daughter who has a busy schedual and needs to go alot of places! So I can relate in that area. It is sooo hard and I feel soooo guilty for the way I feel. I am almost 40 also!

    The only person who knows how you feel is you! So if you are not comfortable with what the doc is telling you or not telling you keep persuing the issue!

    One of the common things we go through is going from doctor to doctor looking for answers. This is not a black and white illness and alot of docs see only black and white. So keep taking care of you Amanda and others who just know they dont feel good and want better for themselfs!

    Take care of you! Codey/Carol
    [This Message was Edited on 04/12/2006]
  7. kholmes

    kholmes New Member

    Good for you for posting a message on this board. Many people on here have had experiences like yours, and there are many who have gotten better and are no longer on here, too. Keep researching, reading up on CFS and Fibro, trying new things. Be wary about trusting any doctors who think it might be "all in your head" unless you have a history of depression. Feel free to "fire" a doctor if they are not helping you and find one who can.
    One of the first things I would check into for headaches is food allergies: dairy, wheat, soy, etc... Many standard tests won't pick them up, so you have to eliminate the specific food for a week or so to see if it makes a difference.
    Candida and mold problems are very common for us, as is insomnia, fatigue, headaches, weakness, muscle and joint pain...
    For many of us, standard blood tests show previous exposure (IgM) to certain things: Epstein-Barr, HHV6, Chlamydia Pneumonia... so have as much detailed bloodwork you can done. Also, make sure they check for Lyme Disease and other possibilities.
    Keep reading and contributing to this board, but don't let messages on it scare you, either. It's a great board for support and information.
    Kholmes
  8. code34me

    code34me New Member

    keep copies of all your test and medical info in a file. I wish I would have done this from the begining but did not know at that time I would have to refer to them and need them for certain things now.

    Just a tip. Codey
  9. findmind

    findmind New Member

    WOW, i've had EBV high titers for 16 years. I also had hypoglycemia until started eating a good breakfast.

    Just hope you find a dr. who understands what "chronic" EBV can do to a person. You might look up an article I JUST cited to prickles here a minute ago, about new EBV findings.

    Ok, everyone...try to make short paragraphs or I'm going to get so dizzy I fall out of this chair! LOL

    Welcome and many hugs...Stormyskye has lots of great info for you...search under her name!

    findmind
  10. Bambi

    Bambi New Member

    your doctor to do the blood test that shows what your sugar levels have been for the last two or three months. You could have Diabetes too and not know it. My husband was SOOO tired all the time and was getting bad headaches. By the time the doctor
    checked his sugar it was at stroke levels. It may NOT be that but worth checking out!
  11. trevorandamanda

    trevorandamanda New Member

    I need to ask the dr. if he's ever tested my ebv antibodies since I first had it. He has run a bunch of tests but all I ever get back it "they're all fine". I know they have checked my thyroid.

    I purchased a glucose meter to monitor my blood sugar and it never runs high...so I don't think diabetes (although I had considered).

    Thanks for the support. I've never really talked about all this - so it was nice to lay it all out.

    ~Amanda

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