Chiari Malformation Community
chiari and fibro
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chiari and fibro

hello.  i was diagnosed with fibromyalgia in april of 2010 and then with chiari one malformation in may of 2010.  My symptoms are migraines, extreme fatigue, pain throughout my body, dizziness, loss of coordination, memory loss, confusion, light drooling, sleepless nights, right sided weakness, irritability, abdominal pain, acid reflux, and lack of concentration.  I have episodes of some facial swelling and sometimes feel paralysis first thing in morning.  I go to dr but all they tell me is that its my fibro and to get rest.  Obviously this has not only interferred with my work ..but my home life as well.  I feel im at a loss here.  I dont know what else to do.   please ...can someone point me in the right direction???
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1435895_tn?1304294841
Hello and welcome!  I was reading that a large number of people with Chiari are misdiagnosed with Fibromyalgia.  Certainly, your symptoms could be coming from Chiari.  It is important that you find a Chiari specialist to review everything with you.  Alot of docs wont acknowledge that CM can cause symptoms at all and consider it an incidental finding.  But look at all of us and you know thats not true.  There is a list here in the forum of docs other members have used and liked.  I have seen several NS's and NL's and have heard the same thing "that tiny herniation cant possibly be causing your problems".  

Be aware that you may have to travel to find one as most of us do.  Welcome to our little family!  You have come to a good place for support and information.   Best of luck to you!
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620923_tn?1439824912
Hi and welcome to the Chiari forum.

As Pam mentioned many chiarians r dx and mis dx'd with fibro...I was mis dx'd as my issues r from Ehlers-Danlos ot really fibro....

The next step is to get to a true chiari specialist..we do have a list to help u get started on ur research, but u do have to research the drs urself to find the right dr for u.

U will want to get copies of all ur MRI's and the reports as well as blood labs etc,....it helps with 2nd opinions.....

And u will want to get a CINE MRI to check u for overcrowding and a CSF blockage....u will want to be checked for tethered cord, a syrinx, and Ehlers-Danlos....even sleep apnea....

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"
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