Newly diagnose persistent idiopathic facial pain
 

Hi everyone.....As the title says, I am a newly diagnosed persistent idiopathic facial pain person. This is on top of early diagnoses of multiple myeloma, which I am just 'smoldering' and no treatment required. I would like to 'talk' to others with the facial pain problem to gain any knowledge I can about it.

All have a nice day and hope to hear from someone. :)

Multiple Myeloma is what Tom Brokaw has. A very interesting book he wrote called "A Lucky Life Interrupted". It tells about his bout with it and lots of other things he has done. I really enjoyed the book.

Hi NoseHurts,

I have chronic Neuropathic Facial Pain and Paresthesia to go with my attacks of TN. One of the most frustrating parts is the pins and needles in my nose.

Welcome and what sort of things would you like to talk about?

Dave.

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Kitt.....Thank you for the info. I had the opportunity to meet Tom Brokaw a few years ago but not under good circumstances. He was having to go on a trip and his wife was leaving for a book signing and his home, with horses, was not far from a raging fire. He is a very nice person. I will look for a copy of his book. I just got home from the doctor for a routine 3 month check-up and everything is still good and am still being considered 'smoldering'. Have a great day and again, thank you for writing.

Hi Dave!!!! Thank you for writing. I understand the pins and needles feeling at the nose and that is the only, thankfully, annoying thing about this disease so far. There are other areas that hurt but only if I press on them. Do you have the facial pain or annoying feelings on one side or both of your face? The Gabapetin I am taking has worked some but not so much around my nose where the nerve ending is. I have to look up Paresthesia to see what that is. Does your nose really burn when you are in a really air conditioned room or out in the cold wind? The hotter days we have had also gets the pin and needle feeling going.

Just came home from my 3 month follow-up for my Multiple Myeloma and had a good report and go back in 3 more months.

Hope you are having a good day Dave and thanks again for writing.

That's really interesting. Thanks for sharing that. I'm glad things are still good for you.

You should be able to find the book. I found it very interesting and not all about MM. Learned a lot.

Thanks again,
Kitt

Hi NoseHurts,

First of all, that is great news about your Myeloma. I am now 21 months clear of Colorectal Cancer, dxed in '13. I now have checks every 4 months.

It is nice to meet someone else with a screwed-up nose, Neurologically speaking. My problems are left-sided due to an arterial knot around my Trigeminal Nerve. Yes the cold air aggravates it terribly, makes the pins and needles more extreme. I want to grab it and writhe it around, maybe rub a sander over it. Particularly cold temps also set off my TN.

I also get affected by high temperatures. I have Neurological Hypersensitivity, so this starts burning more over about 70℉, and my nose follows suit.

Unfortunately, people look at you as if you are crazy when you complain about your nose. But tickle a sleeper there with a feather, or even a hair, and see the reaction.

I have Lidocaine Infusions for my Neurological Pain and take Topiramate for Cluster Headaches. Combined, these do reduce the intensity somewhat, but not enough.

Dave.

Hi NoseHurts,
I'm sorry for the reason you have joined us here, but I'm glad you found us. In my opinion, a diagnosis of idiopathic facial pain really sucks! It's so vague. Over time you will hopefully get a better, more specific diagnosis which will lead to more treatment options. Keep following this with your doctor and try to be patient.

I was originally diagnosed with atypical facial pain and it took over two years to be diagnosed with trigeminal neuralgia. I have an atypical presentation with constant pain on both sides that moves around. I don't know what caused it. One day it was just there.

I get a lot of pain down the right side of my nose. When I cough, sneeze, laugh or raise my voice it feels like a ball of fire flares up inside my nose and slowly dies down. I guess you, me and Dave have something in common--our noses hurt!

If you're like me, you've probably been doing a lot of internet searching. A lot of what I read about atypical or idiopathic facial pain says it's a psychological problem. I would say that facial pain GAVE me psychological problems. There's no way I could have imagined having something that I didn't even know existed. If you run into a doctor who seems to think your pain is all in your head, run! Make sure whoever is treating you takes you seriously. One of the hardest parts of having an "invisible" illness is not knowing whether or not you are being taken seriously.

This is a good place to get your questions answered and talk to others who understand what you're going through. If there's anything I can do to help, let me know. Good luck! Cheryl

But--
 

--has no one suggested the possibility that the smoldering myeloma may have something to do with the facial pain?

Myeloma, and the other blood conditions associated with M-proteins or monoclonal antibodies, are known for producing neuropathy due to cross reactivity with nerve epitopes:

http://neuromuscular.wustl.edu/antibody/mprotein.htm