Confused on dx requirements

Discussion in 'Fibromyalgia Main Forum' started by fibrotina1, Mar 29, 2006.

  1. fibrotina1

    fibrotina1 New Member

    Is it just me, or has the requirements for getting a diagnosis changed? I ask because I am talking with more and more people who say they are diagnosed with fibromyalgia, but only in their back or arm. It really ticks me off when they start going on and on about how they have it and can work, and yet I can't, then they say they only have it in one particular area of their body.

    This is what I understood:

    A fibromyalgia patient will be sensitive to pressure in certain areas of the body called tender points. To meet the diagnostic criteria, patients must have:

    A. WIDE SPREAD PAIN IN ALL FOUR QUADRANTS of their body for a minimum of three months

    B. At least 11 of the 18 specified tender points

    These 18 sites used for diagnosis cluster around the neck, shoulder, chest, hip, knee and elbow regions. Over 75 other tender points have been found to exist, but are not used for diagnostic purposes.

    Am I wrong to feel they are not really experiencing fibromyalgia and the pains that go with it? If they really keep on going and make me really mad I will argue with them. Am I wasting my breath??

  2. pemaw54

    pemaw54 New Member

    but people say what they want to anyway. I get the same feelings when I read about those who havent used pain meds in years and work and help everyone around them. Most days, I cant help myself and the pain meds are the only thing from keeping me from ending it all. That 1st year after I had to leave work almost killed me. I lost all of my friends and that feeling of contributing at home.

  3. fibrotina1

    fibrotina1 New Member

    Hi Suzette! I am only 33 years old and lost all but 1 of my friends when I had to stop working 6 years ago. I used to be ashamed to say I moved back in with my parents, but now I say it with pride. At least I have my parents to count on. With what little bit of SSD I get, I could never make it on my own. So I know what you mean about not contributing even though I have no spouse or children. Its a daily fight.

    Thank you for your reply!!

  4. fibrotina1

    fibrotina1 New Member

    Karen ~ Just so you know you certainly can get SSDI for FMS... I'm Proof!!
  5. Jen102

    Jen102 New Member

    I wish to respond to your comments, and provide a different perspective. I can understand Suzette's comments. I am able to do no more than barely take care of myself--not even do that as my husband does virtually all of the household chores. No matter how much I want to or will to, I can't do any more. I could once. I worked as a professional, did more than my share of things for our family, volunteered, etc. Those things dropped out one by one as I became less able to do them.

    By someone saying they can do these things because they "have to" (like working) or because the "want to" (like volunteering even though it costs them) it can sound a little superior to someon who is not able to do it no matter how much they have to or want to. It is like that person has superior morals or superior willpower or skills.

    When you get to the point of applying for SSDB, it is not a choice that you make. There is no rational weighing of whether you can afford to live on these benefits. It is because you literally can't work anymore, no matter how much you want to. You seek the benefits because that is all that is left.

    I am sure you didn't intend to sound superior, but it could come off that way, and as Suzette discussed, does when people say or imply, "I have what you have, but I am doing much more than you do. What is wrong with you?"

    I hope this helps. Blessings to you. Jen102
  6. deb06

    deb06 New Member

    I totally agree with you. I was one of those people that worked up to 3 jobs, took perfect care of my house, kids and husband, while socializing on the weekends.
    I did this for 5 years after actual diagnosis, but I had been sick much longer.

    There was no way I could quit work financially. Nor did I want to- I loved my job. We are ALL type A personalities here. At least most of us.

    I beleive that everyone of us works for absolutely as long as they can and no more.

    Not one of us can COUNT of disability benefits. and if you do qualify you would make much more working your job.

    I still do everything I am able to each day. Most day that is to take care of myself the best I can for my family.

    Love, Deb
  7. Jen102

    Jen102 New Member

    Sometimes I think that if I had given myself permission to give up some things and expectations a little sooner than I was absolutely undeniably forced to, my low may not have gotten so low. Jen
  8. ckzim

    ckzim New Member

    I am on SSI for Fibro...have been for 4 yrs now.
    I use to hold a well paying good full time job, and a part time job..rasing two boys on my own...

    I had the " I gotta" attitude...until I landed in the hospital for 3 days...being poked and proded to find out why? Every test under the Sun preformed on me...ZILCH!

    3 dr's later....I was told by each one of them...It's Fibro..
    I didn't even know what that was?
    The one doctor told me to file for SS I would not be able to work again.
    I left crying my eyes out...1. Because I was releived I finally found out what was wrong with me..
    2..Cause I had a sentence of pain for the rest of my life with NO cure!

    I took my case all the attorney...just little ole me and my Fibro, and my that hearing that morning and won the case.

    I am so glad that you are still able to function...I wouldn't wish this...this...pain, fatigue...and everything else that comes with this DD...on my worse enemies...

    But I did want to let you know...Fibro can stand alone...
    I'm living proof....sort of...if you call this living?

    My best to you..

  9. fibrotina1

    fibrotina1 New Member

    I was able to get SSDI, I am in NY, because I really can't work and I had a lawyer. I saw over 10 different doctors that had good records. It's something you have to fight for because you need to and don't give up... when all those doctors try to help you get to where you can work and never make it there, you need's survival. I wish I was one of the few who were able to still hold a job and lead normal lives but unfortunately I am not. My hat's off to those of you who can hold a job yet.

  10. claudiaw

    claudiaw New Member

    I totally agree with you. I am 38 can't drive, cook, clean much or work.

    My med's just take the edge off the pain and tightness.

    here is an example of someone who said they had fibro and now was fine, I asked what they did and they said, " I went to a chiropracotr, and now I am fine"!

    I have been going to a chiropractor for 15yrs. and he finally sent me for more test's to find out what was going on because the last few yrs. he wasn't helping.

    So, maybe some people have a "mild" case? Or maybe that is why some dx think it is a" wastebasket "disease, becaues some doctor's maybe using it that way.

    Just like over prescription of anti-biotics, when they think the patient wants answer's for their money's worth they give an incorrect dx.

    Just a thought.

  11. daylilyfan

    daylilyfan New Member

    I think some of you are missing Fibrotina1's key sentance....

    "I ask because I am talking with more and more people who say they are diagnosed with fibromyalgia, but only in their back or arm."

    I work with just such a person. She complains all the time about her pain. I am NOT saying she does not have pain... but she says her doctor said she has Fibro too. I said, oh, you do? "Yes, I have it in my neck." I said -- I think you should go to a Rhuematologist. Want the number for mine? She is great and can really tell if you have it or not. If you do, it is a FULL BODY disease... not just in your neck. She replied... well, my family doc knows more than a whatchatologist. He says I have it in my neck so I do.

    This is just the type of thing that keeps Docs and the public from believing us about how we hurt.

    Just a couple days ago, my Mom said she was talking to her sister, who said that the sister's neighbor has fibro in her arm.


    Come on docs --- read up here!

    The sad thing is that these people have something else wrong that is not being treated properly because the doc just lumps them into Fibro and tosses anti-depressants at them.

    I have quit trying to explain.
    [This Message was Edited on 03/30/2006]
  12. suzetal

    suzetal New Member

    Took me 2 yrs to prove my case but with all of my doctors support and family friends and employer who all wrote letters to the judge on how FM has affected my life.

    I won on FM

  13. lovethesun

    lovethesun New Member

    on Fibro.It only took 6 months