Hi,
I'm new to this forum. I'm not currently diagnosed with Wegeners, although I'm trying to piece together my symptoms that doctors have provided little assistance.I have been experiencing mainly ENT related symptoms, no respiratory or kidney.
I have been on this painful journey for nearly 10 years, and have had doctors laugh, tell me I seem paranoid, or seem nervous etc.
I started to think maybe I was crazy, because every test would come back clear. Not specifically interested in wegners, just CT's (multiple) different bloods, specialist etc.
Pretty much for 10 years I have had chronic nasal pain.
Most of the time its localised at the bridge of my nose.
Overtime, the pain has gotten allot worse and migrated to my jaw, and temples.
It is never in the same place, and the severity is always different, along with the type of pain.
Sometimes throbbing, others waves, then tingles and heat.
I feel uncomfortable every day, and there isn't a moment in the day I can escape the way I feel
More recently, its has started in my chin and upper lip.
As this pain migrated I have started to get a butterfly looking redness over the nose and check, and sometimes the upper lip.
I have also started to develop facial sweating where the butterfly rash/redness is with little exertion.
I have never been a sweaty person, never really needed to wear antiperspirant or anything.
At times my face has the appearance of lost volume, then others its more plump and normal looking (my weight is constant).
The most alarming development has been a change in the appearance of my nose.
For years I had pain, and it remained constant.
No pain relief helps the pain (Panadol, ibprophen, Mobic, panadiene forte, endone.) provide any relief.
The only thing that provides temporialy relief is alchohol, although its never worth it as the pain is ten fold worse the next few days.
Sometimes applying pressure, like pinching the bridge of my nose can help, or having a warm shower. This is only momentarily.
My nose has fundamentally changed shape, its smaller if that makes sense.
Profile photos show this. At first I thought I was just fixated with it due to dealing with pain for so long. Now I know I'm right.
The bridge is more concave, and my nose has much more of a curve, and the end is tippled up when it used to point more down.
I have always had a small nose, but this is something totally different.
At times my nasal flares feel more solid, and other times they are so soft that when I breathe in they kind of shut a little.
I get severe sore red ears at times to, that seems to go away spontaneously.
I also get blocked ears, and regular ear aches.
Nothing makes sense to me anymore. I'm so over my pain controlling my life. I feel like I stopped living the day the pain started.
That's a 1/3 of my life, I'm so beyond over it. If anyone has experienced anything similar, or could provide some insight into my symptoms I would appreciate it. I'm so tired of dealing with this, I just want to not think about my pain for a couple of minutes, and not stress that something nasties is going on inside.
Bookmarks