Chiari or fibermyalgia

[normabubblesoOo]

Ok I went to another specalist tday. Rhumatologist....i think thats how u spell!.however I.was given pain meds for my nerves with a higher doze of xanax and zoloft. I was not to convinced but atleast I got pain meds. He said it wad fibermyalgia..really? Man im so confused. All I know is that im in pain and I cant hack my work anymore. From saturday till tday I had severe pain in my rideside of my face my teeth felt like.fallin I just laid down and cry of pain. Fibermyalgia?

[Chula1968]

Wow- talk about similar experiences: I have been complaining for years, since I was about 11 (Im 42 now) that my bones and joints feel like they are being crushed and squeezed in a vice....
I was sent this week to a neuro-surgeon who told me that the Chiari was nothing and my disinagrating disc's were nothing (I have 7 mm below and severe neck pain that radiates throughout the body including tremers of energy it feels like my arms and legs are falling asleep) this is why I was refered to him.... instead all I got was
asked if I had been tested for FB RA and Lupis,,,, I told him no. That is my next round of appointments.
I have every intention of getting a new Neurologist with Chiari Experience...unfortunately that person is in Maryland or North Carolina and I am in Virginia. So it is outside my insurance scope- so I am waiting for a waiver to come through.
You are definately not alone in your frustrations :-)

[selmaS]

  This is what we all refer to here as "the royal chiari run around"...the drs do not listen to us...we know our bodies and they ignore the chiari unless they r a chiari specialist....

It is very frustrating...but know u r not alone in this.

    "selma"

[normabubblesoOo]

RRRRRRRR..... I KNOW! I HAVE A GUT FEELING THATS WHAT HAPPENED. I STILL THINK I HAVE CHIARI. Y WOULD IT BE MENTIONED IN THE MRI REPORT AND EVERYONE MAKES IT SEEM LIKE ITS NOT THERE. ITS NOT LIKE I GOT THESE SYMPTOMS AFTER THE REPORT. THESE SYMPTOMS WERE THE REASONS I WAS SENT FOR AN MRI. IM GOING BACK TO MY PCP

[*Stormy*]

I have to agree...don't let them label you with FM, it is just a blanket diagnosis when they don't know what else is wrong!! Many of us end up with symptoms that mirror the ones of FM exactly...all they know is that FM is a CNS disorder of some type and guess what? Chiari is a CNS disorder!! I don't know how far you are in your dx but if you have proof of a herniation I would be steering your DRs in that direction. I have read some recent studies that have found that some ppl dx'd with FM years ago have now found out that they have Chiari....I found that quite interesting.
The facial pain sounds so familiar, it is horrible....I didn't really get any relief until I started on Lyrica and only after a long time spent building up the dosage!!

As Selma mentioned...did the Rheumy check for hyper-flexibility?

Stormy

[selmaS]

  Hi I also was given a dx of  fibromyalgia..and later found it was Ehlers-Danlos and chiari that caused my pain...too many drs dismiss chiari as a possible source of pain.

I am curious if the rheumatoid Dr checked u for Ehlers-Danlos?

   "selma"

[jenshead]

It's possible that dr is right, but keep in mind that fibromyalgia is a condition of exclusion.  You only have it if there is no other condition that explains your symptoms.  Chiari may explain all of your symptoms, but drs dont recognize that so they just diagnose you with fibro.