Ways used to describe DD

Discussion in 'Fibromyalgia Main Forum' started by FMayastigi, Jun 7, 2003.

  1. FMayastigi

    FMayastigi New Member

    I was wondering how everyone has described our conditions to people who really could not understand the basic definition? I thought maybe this culd help us try differnt ways to make people, drs, friends, etc. try to understand how we feel times.
    Usually I have told my family and friends that to me it feels like you have one of the worse flus ever and with it you were in a bad car accident that you didn't get severly hurt, but, you know how you feel the day after.

    Hugs
    Tammy
  2. klutzo

    klutzo New Member

    I just say that I was in an awful car accident where I suffered brain damage (true), and my nervous system has been out of balance ever since, causing problems in every system in my body. This usually elicits looks of unbelief, since most people think if I have brain damage I should not be able to talk like a normal person.
    I look forward to seeing the answers you get, as I obviously need a different way to tell people. I am thinking of just saying "my hormones are all messed up". That is what I now believe to be closest to the truth, and most people can understand that (I hope).
    Klutzo
  3. layinglow

    layinglow New Member

    Tammy I have found it easiest to say, "I suffer from a neurological and endocrine disorder, called Fibromyalgia", and leave it at that. Most don't pursue any farther than that.
    LL
  4. Bacci

    Bacci New Member

    Funny that you ask this question!! I am so tired of answering this question (after five years of dealing with it) that last night I stayed up late and started writing a long letter to everyone I know and I am going to email it next week. It describes what the illness is, it's speculated causes and it's known symptoms. I also gave a general description of the diagnosing criteria that just came out of Canada and then I gave a few treatments and specifically wrote that there is no cure but people do various things to cope. It is my attempt at educating the public since nobody seems to know anything about us. I would make a suggestion to anyone who reads this to do the same to your friends, family etc. I am also sending it to the students who were in my physical therapy class. They know me and my character and can better make an informed opinion about this disease and who it affects (it's not all in our heads). Plus it will influence how they treat their patients.

    Finally I highlighted the symptoms, wrote a list of over 40 symptoms I have just to explain to people why we all get so irritated when other people say, "Oh I think I have that, I get tired too!". I tried to make it funny and entertaining to keep them interested to read the whole thing.

    The hardest part that I haven't done yet is what you are trying to do...how do you explain the quality of the fatigue? I usually tell people it's like having really bad flu and every movement makes your exhaustion, pain, nausea worse. Sleeping doesn't help and even worse, time doesn't eventually bring you back to normal. It may get relatively better, like the few days after a flu, but you never get back to the point of feeling like you have energy. I also tell people it feels like my arms and legs weigh several hundred pounds andit's a huge effort to lift them.

    Oh well, my next goal is to write up a short card and hand it to people when they ask. First though, I am still working on how to answer the question, "So, what do you do for a living?"

    Best to you,
    Bacci
  5. tulip922s

    tulip922s New Member

    I really hate telling people I have Chronic Fatigue Syndrome, sounds so trivial. I am curious as to how and what others tell people,,,most people are ususally looking for a sentence or two, not of narrative of the complexity of this disease. My response is almost always something like what you said about the worst case of the flu. Tulip
  6. Bacci

    Bacci New Member

    Too funny! I am sure you are wondering what you said that was so funny, but it's your bio! I just looked it up and had a good laugh! Thanks for sharing the picture. Sounds like you have had a busy moving career. I, too, lived in Mass for awhile and various places around the US and love to travel to foreign places--also liked your Chirac statement. Anyway, down to the matter at hand...I have not yet finished the copy of my letter to friends, fam, etc. Believe it or not, i am on page 5! I hope they bear with me. They all ask me the same question, "Is there anything I can do?" so I am going to start by saying...this is what you can do for me, read this letter and take it upon yourself to become educated regarding this illness. Use the information to share with others who don't know anything about it either, etc. I will take a look at the final copy when it 's done and maybe post it or post parts of it. Will have to think about it since I am writing a lot of really personal things that I am not sure I want to broadcast:) However, you can always make the decision to cut and paste.

    Hope you are having a nice week-end in Tejas!
    Cheers,
    Bacci

    PS Dr. Poesnecker has been one of my phone consulting MD's since the beginning. He has a big heart and is a huge advocate for us. He has always been really pleasant to speak with on the phone.
  7. Princessraye

    Princessraye New Member

    I feel like crap!

    It probably doesn't get the point across but it has been my experience that most people don't understand anyway LOL