NEW to the board, can this be ENS? Nose feels dry and empty
I am posting this email that I sent to the moderator of the board because I never recieved a response. Its amazing how my symptoms really mimic ENS and it is quite scarry and disturbing. ***************************************** Hi there, I ran across your wonderfully informative site after researching my own symptoms and troubles with my nose. My situation is a bit different however I have about %90 of the symptoms you describe as ENS. I was diagnosed with fibromyalgia in the early 90s and then CIFDS and finally chronic lyme and mycoplasma infection about 5 years ago. Since starting antibiotics for the infection in 2004 and following 2 chemical exposures (one was newly place PVC mats in a sauna, the second was steaming citronella oil) I have had terrible symptoms with my nose. Basically my whole nose feels empty, my sinuses feel very very dry and I can feel my inhalation on the back of my palate (very strange and annoying) with a dry and sore throat. I also have an about %50 reduction of smell and react to many chemicals. This is life ruining because I used to LOVE SCENTS. Now everything has to be unscented. Along with these common ENS symptoms I also have chronic vertigo. This has been going on for 4 years now! Do you think that my turbinates can be involved? I went to a couple ENTs and many alterative doctors for these troubling symptoms and even the ENT said everything was fine. Imagine that. Im wondering If those with ENS always display abnormalities in X-rays. I would love to have some evidence that my turbinates are dysfunctional. The ENT just looked in my nose with a scope and did a nerve conduction test along with a test for fluid. Everything was normal. Are there any ENTs that are trained in this area? Its just so frustrating to have no answers and to obsess all the time every day about my dry nose and vertigo. This truly is a torture and I feel for anyone put in this position. The phrase "you don't know what you've got until its gone" is so very true! I took my nose and even all those bad scents for granted. Thank-you for reading my email. I also made a small donation to your association to continue your thorough work for your cause. fibrolymeENS

Hi fibrolymeENS, Welcome aboard and thankyou for your donation. ENS is usually a iatrogenic condition caused by surgical over enlargement of the nasal cavity (Primarily - turbinate resections). However, it could occur otherwise in a non operated nose if the turbinates were to have somehow significantly shrunk to to some illness (like atrophic rhinitis or ozena, or chemical exposure that damaged them). First thing's first - you need a CT or an MRI of your nose and sinuses. Then post the pictures of the different slices here on the board and we can tell you immediately if your turbinates look abnormally small. There is also a possibility that through your chemical exposures you have suffered chemical burns to regions in your nasal mucosa. This would also generate some of the ENS symptoms you describe, but in that case it's not ENS. If that is the case I don't know what you can do about it, but perhaps try irrigating to improve the over all functioning of your remaining mucosa that might help the nose heal itself.

Thank-you for your response! I did have a MRI of my brain because of my vertigo, everything was clear in my brain. However I didnt have one of my sinuses. Im wondering if my symptoms are enough to warrent one, I would really like to have certain things ruled out. If it was indeed chemical burns, then I am suprised that they have not grown back somewhat by now. All in all I feel that my issues with fibro and the lyme have damged my immunes systems ability to regenerate certain tissues. I will ask my doctor, this symptom is bad and has not let up for many years.

As you have many autoimmune problems you should also rule out Sjogren's syndrome. This has a specific test that your GP, ENT or internal physician should know about. It is an autoimmune problem that causes much dryness in the mucosal tissues of the face, amongst other things (perhaps related to vertigo too). The truth is that unless you have progressive atrophic rhinitis or had had any nasal surgery your chances of having ENS are very slim.

You might say that my chances of ENS are slim but I sure feel that I have all of the symptoms. The strange part is I have felt this way in my younger years during a sinus infection but it would never last years! I do feel that the turbine tissue has atrophied somewhat, Im looking forward to a CT scan.

what you say sounds more like a case of nasal atrophy (not progressive atrophic rhinitis) of some areas in your mucosa. It can happen from prolonged and accute sinusitis. All my recommendations still apply.

Thank-you so much for your help, you have been more helpfull then the ENTs that I went to and even my own doctor. Im just trying to hope for some regrowth over the rainbow. I cant imagine those of you on this board who have had your turbinate tissue permanentlly cut out. This could have been me too! I had many sinus infections as a child and teen.

Also another strange symptom is the vertigo, it is chronic. I bet that most of those on this board despite all the sinus problems do not have vertigo.