weird unpredictable symptoms-doctors response!

Discussion in 'Fibromyalgia Main Forum' started by obrnlc, Aug 13, 2006.

  1. obrnlc

    obrnlc New Member

    hi everyone, hope you all are having a great summer day!!
    My question (problem?) is:
    You all know how we have these strange unpredictable symptoms that change constantly, at least i think you all know. Now i am so confused, when i try to explain this to a doctor, attorney, dis. company, they all act like i must be "faking it" (MALINGERING is the word) because they say NO ONE could feel like this all of the time.
    Do others out there "get" what i am trying to describe? (random sharp pains that travel, mostly constant achiness that travels, muscle fatigue that migrates, strength for a few minutes then wears out (arm/leg/neck), really bad brain fog (i'm hoping that is caused by the lyrica and will stop or get less after i stop the lyrica), etc., etc. etc..............
    So often i read posts on here that seem EXACTLY like me, a symptom that i never thought anyone else had, then i read so many others have, it really helps to know others feel it too and that it isn't just "all in my head" Yet, when i try to write it all down, and show the multitude of crazy symptoms to a doc, etc, they comment on the fact that this "nutcase" (or somatoform disorder in medical terms) brought in well over 2 pages of symptoms so i must just sit at home and dwell on it constantly. The list alone makes them just blow me off as a psych!
    Any comments from my cyber family on this will be so appreciated! Thanks,
    PS--anyone know how to change their email address on this message board account? I can't seem to find it or figure it out, the one in the initial registration profile. THANKS and have a GREAT DAY!

    [This Message was Edited on 08/14/2006]
  2. krayon

    krayon New Member

    I feel the same way that you do about trying to get it across to my doctors just what I'm living with on a daily basis. And it's that fear of being judged as a "psych" that I don't go to the doctors as I should.

    It's just the look they give me when I'm trying to explain something new or a different feeling (pain).

    Just a very sad feeling.

    Hang in there. We all know it is real...


    Rick... What you said is so true[This Message was Edited on 08/14/2006]
  3. Rosiebud

    Rosiebud New Member

    seems like you need to change your doctor.....I get those symptoms and though my doctor cant do much to help me, he is very understanding.

    Your doctors need to read up on the myriad of symptoms of CFS and Fibro.


  4. Lynneaquar

    Lynneaquar New Member

    I also get pains that have no rhyme or reason.
    I arms sometimes get so tired just washing my hair in the shower that I have to stop and wait a few minutes until I feel like I can finsih getting the shampoo out.
    I know it's going to be a bad day when I get out of the shower and drying off and just rubbing the towel over my elbows is painful!

    I find that I also have trouble with my vision when I am tired. They get all blurry and I have trouble focusing.
    Nothing to do but go to bed and hope it's better in the a.m.
    The Dr's couldn't find anything wrong with my eyes.
    I find that taking Lunesta has helped me with my brain fog. I wish I could find something to help with my memory.
    Hang in there and know you are not alone.
  5. 1sweetie

    1sweetie New Member

    Yes to everything you said except for the CFS specialist that I see who charges so much and is a 5 hours drive.

    My PCP lets you discuss 2 or 3 things and that's all. Period. Everyone wants you to see a psychiatrist.

    I share your frustration. AS my DH just told me, he wishes they would feel like this for just one week and they would not be so arrogant.

    Most truly do not understand our disease. They really feel like no one could have all of these problems. Sometimes I just wonder how we manage at all with everything that we deal with too.

    Don't you wish that they knew you before you became ill? I HATE this life. I loved to "give back" to this world. I worked hard and I am not a liar. They just see us as we are today and do not know what to do with us.

    It's like when they use to put deaf people(and others with illnesses) into mental facilities. I thought the world had changed but it hasn't. If they can't fix you or you have multiple problems, it is in your head to most doctors.
    That is my opinion. I wish I did not let it bother me but it does. We just want to get better and have a life.
  6. shootingstar

    shootingstar New Member

    The only place I feel at home is on this board. I look pretty healthy, avoid going out during the worst times, so people I know really have not the vaguest idea, even though I have attempted to explain to a few. No medical insurance, so don't see doctors much, but can imagine the problems laying out symptoms there too. If I were not experiencing this it would be very difficult for me to understand either.

    Best wishes.
  7. jacqualyn

    jacqualyn New Member

    Hi Laurie,

    I know exactly what you are talking about. I have been to so many doctors due to this strange illness and have been labeled as a hypochondriac in other words "all in my head".
    I know it's real. On any given day, something else hurts, burns, aches etc. I have had problems with my eyes, ears, head, neck, hands, elbows, shoulders, finger, knees, legs, feet, rib cage, stomach and every other body part imaginable. Who would want to fake this painful illness? I hate when the doctors tell you to get exercise and take vitamins. I'm lucky if I can take a shower or get out of bed. I was always an extremely active person, who worked 2 jobs, took care of a home, husband, child and animals. Now I'm lucky to take care of myself. Lazy does not define me. I have read most of my doctors reports and some of the things they say about me make me want to sit down and have a good cry. You have got to find the right doctors. I'm still looking also, but for now I am settling for the ones I have. It cost lots of money (which I don't have) to keep paying these quacks to tell you that you are fine. Here's a pill. I have tried most of the drugs they give you for pain and if it is on my "does not work list" I tell the doc, no thanks. I do not take antidepressants because they do not help me at all. Try not to dwell on others opinions. Not everyone understands this strange illness. Just keep writing down your symptoms and try not to stress so much. This is not in your head!!! It is real.

  8. 1sweetie

    1sweetie New Member

    I forgot (imagine that) to tell you how I changed my email address with Immune Support so that I could tell if I got a reply.

    At the bottom of each page is a place that you can email or gives you a phone # to call them. I can't remember which I did but that is how I had them change my email address. They will want some info from you to make sure you are the "right" person to make any changes to your info. I think they wanted the first 3 letters of your password.

  9. obrnlc

    obrnlc New Member

    thanks guys--you all have made my day, not that i wish feeling like this on any of you, but there is comfort in numbers! well, i am off to another one now (a fibro specialist, but they still think i have to many symptoms to fit the "norm") (WHAT IS THE NORM??????????) so i must get off. Just went back to dial up for financial reasons so i'll chat when i can--thanks again!!!!!!! ----------L