mouth and nose nightmare

[Judie P]

I am just venting here to people who might understand what I am going through.

My Sjogren's has always caused more of a dry nose than mouth or eyes.  It gets so dry that it will begin to bleed. However, the past 6 months, along with the dry nose, my mouth has gotten drier.  Dentist can't find anything wrong with my teeth or gums after the tooth extraction and bone grafting.  My regular doctor checked me out for sinus or ear infection.  Nothing.  Not even wax in my ears. Seems everything is connected to my right jaw (TMJ or something).

Did okay the past two days with very little pain.  Today I am sitting at the computer and WHAM!  Sharp pain in the nose when I breathe in, sharp pain in my upper bridge, and sharp pain where the cavity and extraction site is located, all on the right side.  That went on for 30 minutes, and now some other teeth, in different areas, have decided to speak up.

What the heck?  I guess it is back to Naproxen and Tylenol again.  I will try nasal spray and warm compress, see if that helps.  I can't imagine what I will be experiencing when I get my neck replaced (6 vertebrae decompression and fusion).

Hope anyone in California is staying cool.  Summer came fast for us.

[meirish]

People with Sjogrens will have nerve pain in their teeth and gums. I swear that dentists have no darn clue what to look for cause everyone is different and the problems we have don't make sense at all.

 I had nerve pain inn most of my teeth and gums....for many years and can't say it was related to any of the many cavities and root canals, abscesses that I had. Nerve pain comes with Sjogrens.  I could not explain my pain to any of my dentists but my last dentist was very smart and was able to understand that weird stuff was going on.

Neuro issues are very common in Sjogrens and can affects us in so many ways. Have you seen a neurologist? My last good dentist did a pain assessment of the teeth I had left and I had pain numbers of 4 to 9 in those teeth. He just pounded lightly on each tooth as I had to assess the pain. When I had my teeth pulled the roots of my teeth looked very abnormal and like there was no life in them.

They looked normal on all my X-rays. I would bet that all your issues are caused by Sjogrens and there is no way anything will be identified by most dentists cause it is weird. I spent all that money on my teeth, bridges, abscesses, and could have died from all the infections that I had as they were very bad. When my teeth were all finally pulled all this weird stuff went away.

My dentist pulled  my bottom 5 front teeth as I had so much pain. I wore a mask for about 10 months to work. Dentist wanted to see how long it would take me for that pain to go away and it was 10 months. During this time he did things to other teeth and we would wait and see what would happen. He was like all dentists and didn't want to pull all my teeth...they are all trained that way.

However, he believed me and my sjogrens diagnosis and did lots of things to see if pain would go ways, etc. He finally ended up pulling my last 12 teeth and I got dentures and it was such a relief. Dentures are not that bad. Use the denture cream and learn to live with them. I can eat almost anything even corn on the cob. When you suffer for 15 to 18 years with your teeth like I did getting rid of them is heaven.

The mouth has around 700 bacteria and infections of all kinds can happen to people with sjogrens and other autoimmune diseases that affect the mouth. We don't make enough or the right kind of mucus when we have sjogrens and infections can run rampant. I would stay away from implants as the infections can kill you due to the poor immune response to infections and especially in the bones.Bone infections are very serious. As a retired registered nurse I have researched and studied the sjogrens and the mouth and white cells in our mucus membranes and it blows my mind that dentists don't get it.

I have been through a lot and have had infections in weird places in my mouth, airway, nasal cavity etc and getting my teeth pulled helped. I told my first dentists that my teeth were sick.....and they were.TAke care. meirish

[Kathy57]

Judie,

I suffer horribly with my dry nose, sinuses, and mouth too.  My eyes are dry but never as awful as my nose and mouth!  I use a Neti Pot at least twice per day and I use a budesinide rinse once or twice daily for the inflammation. 

Sometimes I use Aquaphor inside my dry nasal passages and am always by a humidifier!  I have several and for different rooms.  I still suffer and if I get a sinus infection my teeth and sinuses kill me too.

This past winter and Spring were the worst!  I hope you find some much needed relief, and know that you are not alone.

Kathy

[meirish]

I had a whole lot of nasal and sinus drainage that was to thick and I had so many infections that at times I was doing up to 6 or so sinus irrigations a day. This was back in the early 2000's. It almost wore me out doing all these irrigations. The problem was that the mucus drainage I had was just enough and just thin enough that it caused a post nasal drip that I could not get rid of and I choked and coughed and had quite a time with it.

It took my ENT years to figure our what was going on. Always thought that it was all from my bad teeth....and a lot of it was as in 2006 I was diagnosed with severely low t-cells and this added to my bodies inability to fight  off the infections. Getting my teeth pulled helped a lot but when IU started my IVIG for my Myasthenia gravis it also helped my immune system and my t-cell count became more normal and so less infections.

Also, the IVIG helped the myasthenia gravis and caused me to have less weakness in the muscles in the roof of my mouth. This is turn helped me to clear the mucus out better. The bad teeth were really a huge part of my problems and then with further diagnoses other problems we weren't aware of were somewhat resolved and helped things improve also. The dryness is another story. I do think that dentures help a person hold onto some moisture in their mouth so that helps. The IVIG hasn't helped with my Sjogrens. I have a lot of problems with many organs and areas in the body that secrete mucus. meirish

[susanep]

I was like you Irish with my teeth. I have complete dentures, and I will never regret getting those teeth out. I wish I could get my bottom plate to fit a bit better. I wear both, but I don't have the money yet to have them relined if that is what it is.
susanep

[deeindiana]

I'm sorry you are dealing with this. It's always something, isn't it. Just an idea: have you ever tried Mucinex? I have terribly dry nose, sinus and eyes. Sometimes when my nose is really dry/stuffy and my sinus throb, I take a plain Mucinex. (NOT the one with decongestant). It seems to help relieve the pressure and relaxes things up there.
I hope you can find some relief!

[Carolina]

I take generic Mucinex twice a day.

I use Nasocort twice daily.

I have the humidifier on in the winter until the humidity in our apartment is high enough without it.

I take 30 mg pilocarpine (Salagen) a day.

I still I wake up with a mouth so dry it doesn't feel anything like normal.

My eyes are so dry that I must put in eye drops (Ultra Systane) during the night and in the morning, so that I can see.

I keep a bottle of water next to the bed and Sip Swish and Swallow as needed.

No one has a clue what we go through.

Elaine

[Kathy57]

Well, I decided to update my story.  For over 20 years I have kept the same dentist and my teeth didn't become really problematic until my Sjogrens symptoms started in; about 8 years ago.  I found out my dentist knew nothing about Sjogrens, but worse than that, she showed no interest in learning about it.

All she could tell me was that my mouth was really dry and could be hard to work with.  I asked her if she could order me a prescription fluoride toothpaste made for very dry mouths and she did, but did it very reluctantly.  My teeth seem to look and feel much weaker, thinner, and the exposed teeth below the roots are changing icky colors and my teeth now chip easily.  I have ancient fillings that need to be fortified/ replaced! 

Well I've been threatening (to myself) that I'm going to get a smart, proactive dentist who is knowledgeable of Sjogrens who will address these issues before I lose my teeth.  I don't have any pain and they are still functional, but they need intervention!!!

So I hate change but I finally did it!  I found a really sharp and proactive dentist who is very knowledgeable on Sjogrens.  I hated telling my old dentist that  I'm leaving but I said goodbye to all her staff and thanked them.  I will miss them but not the dentist.  Her staff took better care of my teeth than she did

Anyway I've had two visits with my new dentist and will have another visit this Wednesday. She did some much needed repairs on my two back lower molars.  She decided I needed a lot of work done but she will do the most needed first and then work on more.  She doesn't want to do it all at one time as some of my teeth can wait a bit longer. 

I'm just glad someone has a plan to fix them rather than to just clean them and say that we will continue to wait and do nothing.No

Wednesday I'm going to have my 6 top most front teeth repaired with Bioclear.  It's done for cosmetic reasons but in my case they will really protect and strengthen them and protect my bone, and fix the chipping, and protect my sensitive teeth from my bad GERD, and the breakdown of enamel it causes.

Im glad that it can be done ( I didn't even know this was an option), but I'm nervous about it too.  My insurance has paid for much of the work so far but won't pay for the Bioclear. It's $4,000! 

I took a few days to think about it and have decided to go through with it.  My teeth will only get worse if I don't do something.  Im going to charge it on my one card that gives me frequent flier miles.  I feel a bit selfish investing this much money in me, but I do use my teeth every day, as we all do!  My new dentists seems to think this will make a big difference in how strong and protected my teeth are and will make them look much better cosmetically.

Wish me luck.  I understand it will take the whole morning, at least.

I'll keep you updated

Kathy

[meirish]

kathy57, I surely do wish you luck in this endeavor. So glad you followed your intuition and changed dentists. It is so hard to give up a doctor or even a dentist when they aren't doing us any good. Some of the issue is we have to take the time to see new docs and find one that fits us and will do us some good. Let us know how the new plan is working. Take care. meirish

[Judie P]

Hi, Kathy57.  I finally got through all my dental work.  It took 3 months to get the two teeth extracted, a temp bridge and 3 follow up visits, a new bridge that was created wrong and sent back, and the final bridge put in.  I am much better now.  After all that, I needed a good cleaning as I have upcoming surgery on my neck.  She told me that my teeth were bleeding a lot and that it must be severe gingivitis.

Needless to say, I was not set on that explanation and looked into some other problems that cause that.  I have no intrinsic factor so I developed pernicious anemia.  Bleeding gums is one of the common symptoms of Pernicious anemia.  I am not saying that she was wrong, but some of our other side effects of having Sjogren's can be a problem.

[meirish]

Judith, so glad that you pursued the gingivitis and found out the cause. These dental issues are so hard to get diagnosed and so many dentists are just hopeless. Sorry to say that but I don't know why my dentists didn't pay better attention.  I often think back to all the dental work I had and can only think that most of the dentists liked the money. Heaven help us if a doc(of any sorts) will think that our gut feeling is incorrect.

Apparently I am having a sarcastic evening.   Sorry if I insulted anyone but the amount of dental work I had was astronomical and keep us almost broke at times. Good luck. meirish