Fibro and cranial nerve disorders

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People that have Fibro along with Trigeminal Neuralgia, and other cranial nerve disorders

Members: 13
Latest Activity: Apr 7

cranial nerve disorders and Fibro

Now there is not much info on this but from some experience I have my own theories on this subject. I did find this amongst a bunch of mumbo jumbo. If anyone finds more info on this please post, thanks, Diana

A final criterion in our classification scheme is atypical facial pain. We propose that this term be limited to patients reporting facial pain in the context of a somatoform pain disorder. These patients usually experience bilateral facial pain, which spreads outside a trigeminal distribution, along with multiple pain complaints in other body regions, including diagnostic clustering such as fibromyalgia or chronic fatigue syndrome. Patients must be evaluated using psychological testing prior to confirmation of this diagnosis.

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Comment by blueeyedgirl on April 7, 2012 at 4:36pm: Joanie-that was a perfect description of the pain! I've had a hard time describing such to family and friends....

Comment by blueeyedgirl on April 7, 2012 at 4:25pm: I'm another one with both Fibro and TN. So so so encouraging to know Im not alone,. It always seems as though if its not one thing, its another. I work full time as a stylist and salon manager. Honestly just don't know how much longer I can do it. Single mom on top of that too. I feel like a failure at home cuz my apartment is just trashed, because I give absolutely all I have to work. Even then, ends are not meeting due to medical expenses. Oy Vey.....so happy to be able to vent and give some support too.

Comment by Joanie on October 28, 2011 at 6:59pm: OOPs I hit add comment by accident lol. so my Doc upped my dosage to see if that helps.

Comment by Joanie on October 28, 2011 at 6:58pm: I have this as well. Mine was diagnosed due to Sjogren's Syndrome, that I had for a year before Fibro was also diagnosed. I get this horrible feeling usually only happens on one side of my face. but it feels like the skin has been ripped off my flesh and all the nerves are exposed. it starts up my jawline and to my eyelids on that side. then down the center of my face around the mouth and chin area. but I also get Numbness at the base of my scull, Numbness and burning feeling between my shoulder blades. and numbness at the back and outsides of my thighs at first my Rheumy thought I may have MS as Sjogrens presents a lot of the same symptoms. Anyway she sent me to see one of the top Neurologists. in British Columbia at the UBC MS Clinic but it came back neg for MS and positive for the Sjogren's which I already had the positive blood test for that but this just confirmed it. then a year later was also diagnosed with Fibro, and since then many other Chronic health issues. I just got over a week long bout of the numbness, combined with the swollen neck glands they are a result of the SS. I was on a very low dose of Gabapentin, anyway my

Comment by Juanita Morris on February 23, 2011 at 3:13pm: Hi everyone, I am living with Trigeminal Neuralgia and Fibro daily, what a bummer huh! I had an MVD for my TN a couple of years ago and it made my Fibro alot worse and the surgery didn't help either. I'm on disability now, leaving a job as a Respiratory Therapist. The battle is constant... and I never seem to win. I do have a few days when I think this isn't so bad then wham it's back to remind me I'm the loser in this ongoing war. Although this sounds very disparing I am a very good natured soul. It's so good to know there are people who understands my situation. Glad to have found all of you!!!!

Comment by Diana Parker on December 3, 2009 at 6:28pm: Occipital Neuralgia is killing me!

Comment by Diana Parker on November 1, 2009 at 8:37pm: Well I know not to wear a cap any more, made my cranium hurt the next day!

Comment by Diana Parker on October 28, 2009 at 7:37pm: Hola, Maria, I have forgot what pain free is, if I wake up and have an ok day I think something is wrong. I guess we look for reasons anymore as many people have told me. My nights is a bit painful so I am not going to be on that long, me pesa la cabeza!

Comment by Maria Gomez on October 28, 2009 at 7:32pm: Hola Diana! ;-) How are you? I will check the site out, thank you for the link. I am starting another round of doctor visits tomorrow. As I said in another post (cannot remember) while I have been pain free for the last 5 days, the last month and a half have been the worst I can remember in the last few years. While I know that some factors in my life may be making things a bit worst, these are not different now than they were a year ago so, I find myself at loss for reasons to explain why symptoms seem to have worsened. So, we'll see what comes out of that. Thank you Diana, for asking. :)

Comment by Diana Parker on October 28, 2009 at 7:25pm: Hey Maria, check out our other site a livingwithtn.org This is not a fibro thing, but it is common for people to have it together, even though TN is a bit more rare than Fibro. You can learn a lot from the other site too.
Have you seen a neurologist for this?