Newbie Question -- seeing a Doctor about CFS...

Discussion in 'Fibromyalgia Main Forum' started by OmShanti, May 22, 2003.

  1. OmShanti

    OmShanti New Member

    Hi all, I'm new to this board so forgive me if this is a silly question...
    I've pretty much self-diagnosed my CFS. My family and those that know me well, agree that's probably what I have. I got a really bad case of mono in 1995 (was immobile and slept for pretty much three months straight) and since then, I have not felt like I ever have energy. I go through phases/cycles, ups and downs, but the ups are never really all that "up" and the downs are getting frequent, lengthy, and near-debilitating. It takes all I have to make it to work each day, I feel like crap 24-7 pretty much. It's getting to the point where I'm not sure if I'll be able to get up and actually go to work the next day, and I'm scared and frustrated.
    I've been tested for everything time and time again and all the tests always come back normal.
    I've done a lot of research online, and all my symptoms and what I've experienced over the past 8 or so years pretty much lead me to the CFS conclusion. I want to document this somehow with my doctor, but I'm afraid to even talk to her about it, as I'm afraid since I've never mentioned all my symptoms in the past (always just kept it to myself because i never thought it was severe enough to be worth mentioning) that she'll laugh and tell me it's all in my head.
    I was just wondering if anyone else has had success in explaining it to an actual MD and if you maybe had any advice for how to even bring it up without having it sound silly. I know I shouldn't feel embarrassed about it, I mean it's real and I know my body better than anyone else does, I'm just nervous because when you say it out loud it really doesn't sound as severe as it actually feels. and you never really look as bad as you feel, you know? I don't know, I'm sorry for rambling. any insight would be great, and even if not, thanks for letting me vent about my frustration.
    peace and health and happiness to all
  2. MemoryLane

    MemoryLane Member

    How long have you been with this doctor? Can you casually mention that you have had CFIDS since your Mono in 1995?...Like this...Did I ever mention to you I have CFS? And then go into how it started with your Mono and the symptoms you have experienced. Tell her you have read about how it is maligned in the medical community and that you were concerned about her attitude and was afraid to bring it up, but now you are at a point where you need professional help with it, as you have done all you can on your own.

    Would this work for you?

    Lane
  3. granmakitty12

    granmakitty12 New Member

    I would try to explain to your doctor all your symptoms. Maybe when you go for an appointment, have notes made. Just don't be intimidated!! I know that can be hard. If this doctor doesn't help you, try to find one that will.
    Keep in contact with the board. We care about you!!
    Good luck!! Maybe someone else will have some ideas for you. Granmakitty

    No, it is definitely not in your head!! Hang in there!!
  4. OmShanti

    OmShanti New Member

    I have an appt a week from today, I'm writing everything down so that I don't freeze up when I start to explain it all. This board is great, I really appreciate your encouragement, thanks again!
  5. Shirl

    Shirl New Member

    Hi, just wanted to welcome you to the board.

    Shalom, Shirl
  6. tulip922s

    tulip922s New Member

    You mentioned that you had not shared all your symptoms with your doctor,,,,you must in order that the doctor can make a informative diagnosis. I carry a list of my "silly symptoms" with me to the doctor everytime I go as there seem to be so many that I might forget. Trust me, there are good and bad docs, as well as mixed feelings in the medical community regarding CFS. Don't stay loyal to one who you do not feel is really helping you. I have lost my job, my home, and my marriage as a result of CFS. It is a real and serious illness and I have no problems telling ANYONE I am sick, very sick with CFS. The one big thing that bothers me about this illness is the STUPID name,,,,sounds so trivial. Best of luck. Tulip
  7. 4mylabs

    4mylabs New Member

    Please sit down and make a list of everything that you just told us. From what you say it really does sound like CFS but you do need to have some tests run to rule other things out.

    I was lucky as my family Dr diagnosed me with CFS and did so rather quick. He didn't doubt the way I felt and ran the tests to confirm. He then helped me find a Dr that could better treat CFS. It's been a long road but I am feeling better and doing more things. Don't know if I will ever be 100% again but I am working at it!

    Best of luck
    Julie
  8. Princessraye

    Princessraye New Member

    If you have never been diagnosed with CFS by a physician I would not tell the Dr. you think you have CFS/CSIDs
    The reason I say this is most medical professionals I have known tend to think we are hyphochondriacs when we come in saying we have something that they have not diagnosed. (ego, I suppose )
    I would say something like I had mono in 1995 and have never really recovered. I would like to find out why I am experiencing .......(list your symptoms) and what we can do to get me feeling better.
    Good luck !
  9. OmShanti

    OmShanti New Member

    when I go for my appt thursday I'm not going to bring up the word CFS at all, just all of my symptoms and the way i've been feeling for so long, as I'm fairly certain I know what her reaction would be if I told her I thought I knew what it was. Last time I was there, I had a bite mark on my leg that had been there for nearly a year and I expressed some concern about the fact that it hadn't gone away yet, and she just laughed and told me I worried too much...I'm thinking I'll probably need to just find another doctor but I want to give her one more shot since she knows at least some of my history.
    You all are so supportive, I'm really thankful to have come across this board/site; I'm still making my way through the posts to maybe learn what's been working for some people so far. A beautiful day to everyone :)