Sjögren's with deviated septum anyone?

Thanks. The surgeon I saw said I have a deviated septum but didn't say it required intervention so I'm guessing it isn't as severe as yours was. It was only afterwards I realised that I hadn't told him how badly I've always slept - waking every few hours since as long as I can recall. I then started to wonder how much of this is due to the nasal congestion. I can only sleep on one side because of the deviated septum. He got the camera up into the nostril but it really hurt. 

He blamed Sjögren's dryness for the nose bleeds and said the blood clots were because I was a nose breather (breathing through one nostril) so the blood was running down back of my mouth sometimes, forming clots in my mouth and throat while I slept. He recommended I use Vaseline every night in lower nostrils and naseptin when the bloods were happening and thought a humidifier would help. He arranged for a sinus CT which I duly had ten days ago but have heard nothing yet. He felt that all would be fine and just confirm the deviated septum. So I thought I'd ask about it here to see if the reason I've been struggling more with this is dryness or is something I should push to have remedied by surgery. But he was very nice and is very well regarded locally so I'm sure he would say if he felt I'd benefit from surgery for it. It was only that I'd forgotten to mention how much I always wake or ask about the possibility of sleep apneoa. 

Thanks Megheart. He is a very good surgeon and would certainly have told me if he thought my deviated septum required a septoplasty. But I omitted to tell him how badly breathing through one nostril only (I am a nose breather these days which I know because I am also a bruxist with TMJ and hate mouth breathing so wake immediately I start!) affects my sleep. I did email him about this afterwards but heard nothing back. I had a CT of sinuses and he said he would let me know if anything untoward occurred. But it is the beleaguered NHS and he seemed to think all my issues were Sjögren's related so I think he doesn't want to mess! 

Thanks TJ - your experience sounds more dramatic than mine. The ENT seemed reluctant to take me on board because he felt that my Sjögren's was responsible for everything that was occurring in my ears, nose and throat and all my nose bleeds and tinnitus and sore throat were due to the related dryness not the deviated septum. He's a great guy but I'm still not sure he's right because now it's been confirmed I realise how much the deviated septum has affected me as a person who had such rotten teeth as a child and younger adult. After a dentist warned me that I was a mouth breather I started clamping my mouth shut at night so now have bruxist and TMJ and half my face is numb, lips and gums tingle painfully all the time and I have a rotten taste. My oral consultant can find no sign of severe dryness in my mouth so has written to my neurologist to say she believes all is part of this very neurological Sjögren's I have. So I'm getting mixed messages although I explained to her what the ENT had said about the deviated septum and the dryness. Of course I'm dry and of course I have neuropathy and arthritis in my jaw and neck and arthralgia and severe fatigue. But I think the deviated septum also accounts for more than the ENT was perhaps willing to concede? I had to stop singing in a choir because any high notes would trigger bleeds and these blood clots overnight. I told him this but he just smiled and told me I needed to keep moisture levels higher in my room and use Vaseline and Naseptin as and when required. He just kept saying that Sjögren's is a really difficult disease to manage and I will get congested and have a very dry mouth and sore throat - it's the nature of the beast type of thing! 

I get what you're saying. I can't help but think somehow all my problems are related. Just curious because I can't figure this one ouut..anyone have red palms and or palms and feet that become sticky for no reason? Sorry to go off topic!

Is that palmar erythema perhaps? I know that this is common with RA and also can be a sign of liver problems so you should probably ask as doctor about it just to be sure 

Thanks so much for your kindness and sympathy  TJ. It means a lot to me because I am apt to think (and be told) that all these things are just minor or mild. My neurologist just looks at me impassively when I try to describe my symptoms to her. She clearly thinks, and sometimes says that it's all just me over thinking and over aware of stuff. But to me, a non medical person, everything is interrelated. I'm on 3g of Mycophenolate and am told by my rheumatologist and neurologist that the only way they can monitor the effectiveness is by my account of improvements. So of course this makes me extra aware of all these seemingly little signs and symptoms. One thing seemingly improves where another worsens significantly. They just hear the improvement and tell me that's enough for them - but it may be that I've just learned to live with certain neurological symptoms more easily. It's all so horribly subjective!! X

Dear Tumtum, one of my favorite sayings is that "Only crazy people think they are NOT crazy"! We question our bodies and selves on many things big and small. Our daily lives with this disease wreak havoc on us in one form or another so why WOULDN"T we question it. It is very scary when new symptoms pop up and is very stressful. I wonder how many of these Dr's have an autoimmune disorder or other illness and have to deal with it on a daily basis??? Can you imagine if they constantly woke with blood clots in their throats or had parts of their body go numb or be in extreme pain and the list goes on and on. Most likely they would be calling on every friend in the medical business they know for help. It is so frustrating and maddening at times bu tplease stick to your guns. Don't let anyone belittle what you go through, do your best to demand answers, and know all of us here got your back! 

TJ it is great, in a world where we are all surrounded by people who can make choices about how to live and be well - often taking reasonable health and quality of life for granted, to have others who really know how it is. 

The problem is that, for complicated reasons I won't go into here, my health and my work are overlapping now. And this means I know my ENT a bit socially and professionally. He's a really good man and gets most of the throat cancer patients in my area - and clearly knew a lot about the aspects of Sjögren's that often take sufferers to ENT. So I cannot envisage finding someone better to look at this problem for me. 

Also I think I've made a bit of a twit of myself with him- by asking about sleep apneoa and requesting a referral to sleep clinic - in a non health related context. He hasn't replied and I'm sure he would have if anything of concern had shown up. He did say that my request to have digital copies of my sinus CT for my own purposes, was completely reasonable  and to let him know if I had problems accessing these.

But he didn't comment on my sleep apneoa suggestion so I'm thinking I've crossed a boundary with this and he will simply write to my GP (whom I see on Tuesday) and wash his hands of me as a Sjögren's patient who he can't do anything.for. I am, after all, under rheumatology, neurology, opthamology, audiology and oral medicine - soon to be seen by gastroenterology too.

I guess I will have to ask the GP if a sleep clinic referral might be useful when I see her next week. But as you know, many of these specialisms are one stop shops for the likes of us because they can't help autoimmune people in the same way as they can help cancer sufferers or people with other acute problems specific to ENT. 

Thanks Amkoffee. First off I'm a UK based NHS patient so I am not paying for anything myself apart from through my high taxes. He has to write to my GP with the results of the CT and I'm sure he would have phoned me and asked me back in by now if anything very untoward (beyond deviated septum which he explained is very common) had shown.

I also know him in another context so I did email him about the lifetime of insomnia suggesting possible sleep apnoea but felt very foolish afterward I'd sent it  because I read up and deviated septums don't cause sleep apnoea after all  - which I'm sure you knew but I didn't. In fact being forced to breath through mouth and working nostril because of nasal congestion can actually help sleep apnoea in some cases I read. 

But I will ask my GP for a referral to sleep clinic for assessment because never getting a decent night's sleep is as bad for the health as anything but add in the inflammatory fatigue of autoimmunity and it's a kind of hell as you know. 

My son who at the age of 9 had sinus surgery although he did not have his septum fixed now has sleep apnea at the age of 30. I who had surgery not only to fix my deviated septum but a couple of other issues now am on oxygen because I breathe shallowly while I sleep. Not technically sleep apnea but a breathing problem none the less. So I'm not suggesting that a deviated septum alone would cause sleep apnea. So I don't feel you should feel embarrassed by any means for having asked about it. Of course it's up to your doctor to decide if you should have a sleep apnea test. As I believe that works in the UK you can't have a test done unless your doctor approves it. Good luck to you.

Thank you