Fibromyalgia or ???

[ozzy66]

Hello!  This is my first post and I am hopeful.......I have been dealing with extremely notable symptoms since 4/09. After much blood work, many hospital visits and an abnormal MRI, my neurologist told me I have Fibromyalgia.  He then sent me to a rheumatologist who was COMPLETELY against diagnosing someone with Fibromyalgia.  He instantly took me off the nuerontin that I had only been on for one month.  I then returned to my neuro advising him that my symptoms continued and some were worse. Most notably SEVERE headaches, new blurry vision, complete physical fatigue and weakness and pain throughout my entire body.  My MRI had shown scattered nonspecific white matter lesions in the frontal lobe. When I asked if it could be MS he said no, the lesions for ms are in a very specific area of the brain.   He finally agreed to give me a spinal tap based on the lesions and the symptoms.  I am now awaiting results from the spinal tap.  For those of you who have been diagnosed with Fibromyalgia how did you arrive to a place where you were certain it was that.  Also, how do you deal with the stigma that goes along with it being known as the dianosis given when they can find nothing wrong with you?  

[liviesmommy]

For me, they diagnosed me with fibro after every blood test available and by doing the 18 point pain test with me.  Rheumatoligists do not seem to be much help, but there are docs out there they deal specifically with Fibromyalgia....maybe do an internet search for your area?? I honestly do not take anything more for my fibro than Tylenol Arthritis because I am trying to get pregnant so I don't know much about the medicines out there to take...I have heard that some people do really well on the meds and some people suffer more from the side effects to take them.  As for the stigma...well....there are just some people that understand and treat it like a real disorder and there are some that just well....don't.  Giving people as much information as you can about fibro helps them to understand it better, but I still have to remind even my own husband that I just can't do all the things that he can do..that I need to take breaks and rest more than he does.  It's so hard for other people to understand, because there are no real physical signs of Fibro and you have good days and bad days....one day you can do more than another day....sorry it has to be so hard...I know that it *****....I really hope that they can figure out what's up with the lesions and that you have good news come back from the spinal tap!  

[ozzy66]

Thank you for writing me back.  I'm still waiting for the results of my spinal tap.  After reading the info., if it is actual ms the spinal tap may not tell much anyway.  That's the hard part for me., do I just say ok it's fibro and go with it., or do I continue to see if it's something else!  I feel awful today.  It almost feels like I have the flu my body is so weak and achy.  As for the stigma, when I told certain people at work (That I thought were my friends) the one made the comment about it being the dx when they think nothings wrong with you and the other is like ok, fibro that's not big deal. If this truly is fibro, then it's awful because somedays I have absolutely NO ENERGY!!!  My entire body feels weak.  As for explaining to help them understand, they just look at you like you're a loon making it up for attention.........ugh!  This not knowing is the worst.....I wish you the absolute best and thank you for responding!