How exactly do they know you have fibromyalgia

[xmelax35]

Hi, I have a question but I don't want to come across as sound rude or non-believing to those who have it.  First of all I have other conditions I am being treated for - I had surgery 2 years ago for Chiari Malformation and of course there is no cure for it it will always be there and well it is and so is the pain! Anyway I had a test for Fibromyalgia and the rhueumotologist (spelling) told me I had a mild case of it in my back.  Well I wanted them to research and find out the real cause for my pain - because there are a few spots (one in particular) I wanted them to focus on and look at but instead they didn't.  I am sure if I would have answered more of the questions honestly I she would have given me full blown diagnosis of fibromyalgia but instead again, I wanted them to do more tests but they didn't.

Anyway, I just wondered exactly how do they see fibromyalgia and know that is what it is? I mean I sometimes think they just come up with this as a means of calling the pain something when they don't know what else it is or don't want to test anymore.  Just like chest pain when they say it is chest wall inflamation - they can't see that and don't know so they give it that name and don't do any further testing....(this happened to be true in my case with the chest thing bc I went to another dr. who did real testing and one of the tests came out abnormal but that is another story).

I dont' want to sound rude because I am not meaning to, I just wondered how they come up with it.  I was hoping they would really look into my pain but instead a mild case of fibro (even though again I am sure if I would have answered all the questions honestly it would have been full blown fibromyalgia).  Plus I know my neck pain is due to the chiari along with my migranes.

Sorry for all this and I hope it doesn't confuse anyone for it is late and I am in a ton of pain right now...and refuse to take my pain meds (vicoden)...I only take it when it gets severe (of course I am wrong then too...because sometimes I wait so long it doesn't seem to work).

[susie599]

hi honesty im sorry to hear that  im onZYDOL50MGandAMITRIPTYLINE 50MG although sometimes im out of it so i try to hold out aslong asi can without the AMIT,i hate beingunder the tablets  but as you now you have good days and bad hope you feel a lttle better s..

[Honesty82]

Hi Susie, I kind of gave up with trying to do anything with my fibro, am on painkillers for when i need it but most of  the time it was brute force and ignorance on my part 'i will not let it beat me etc' although now i'm looking into whether it was MS all along but i'm not holding out any hope of finding someone to admit they were wrong!
What pain killers have they put you on?

Cx

[susie599]

hi i was diagnosed with Fibro after about ten years of continuing pain ,also with the process of elimination. i often felt like screaming ,has i thought they didnt believe me for atime  i just put up with it   till i went back and finally got adoc that listened   he sent me for the tender points test and i think it was 12  i am on pain killers and do alot of stretching and water excercise (dont work) so if you have any ideas i would be gratful

[xmelax35]

Thanks all! I appreciate this.  I don't think I had the proper testing. I had a questioniarre test.  It all sucked.  I just get sick of being passed around and plus my MRI's show something on it and they are all like that is nothing...well it is something to me! It shows something right where I have been telling them I have a great deal of pain!  Thanks again.

[Honesty82]

Thank you Patsy, you've just made my day, I was diagnosed with Fibro when i was 15, they didn't do any testing, it was more a process of elimination, i've now been diagnosed with MS which when i Q'd was it MS all along they looked at me like i had sprouted another head! My older sister has just been diagnosed with Fibro too but she didn't get these tender point tests or anything!

Right... thats me off to kick up a stink! :o)

Thanks again!!

[patsy10]

There is diagnostic criteria that has to be met to be diagnosed with FMS.  One criteria is 11 out of 18 tenderpoints.  Unfortunately people often get this diagnosis for the reasons you stated above,  without proper testing. The testing should be done by a doctor who knows and treats fibro.  I was diagnosed by more than one doctor with fibro.  None of the doctors ever checked for the tender points.  I also have Chiari 1 but not bad enough for surgery.