The Australian Sjögren's Syndrome Association

Sinus pressure from sjogrens?

Does anyone with SS or RA have horrible sinus problems? I never had allergy or many colds before SS. I've had fluid in my left ear, stuffy sinuses and sinus pressure and headaches for several months but there is no infection. Dr is scheduling a CT to see if there is a problem with sinuses but my honest guess is that it has to do with the constant state of swelling I'm in. Do sinus passages swell from immune attacks?

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Hi again ! I have sinus problems as well , i get regular infections and facial pain . I don't know if its because my white cell count is always low and im open to infections . I try and control things by using a saline spray 2-3 times a day and if i feel a problem starting steam a couple of times a day and gargle wit warm water salt and cider vinegar . My ears also feel full and blocked . I hope the ct scan shows something treatable, my friend has the same problem ,without the autoimmune , and ithe scan showed polyps which are going to be removed. Best wishes xxx

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I didn't even think that it could be something like polyps. LOL I forget there are conditions unrelated to AI. I've been using saline spray for a few weeks now and it does help. Hoping I'll see if it is allergy when the cold arrives and see if my symptoms improve. Just weird to stay this way all summer when I never had allergies before but I guess it's possible.

I hope you start feeling better soon!

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I have read alot of sinus related posts on different sites so there could well be a link, good luck with scan , keep us updated xx

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Ps I read that saline sprays can do more harm than good because they create a dependency. And if I'm right in thinking that Sjögren's is primarily about autonomic and peripheral nervous system dysfunction, then we need to keep reminding our autonomic nervous systems to enable us to produce moisture - including snot!!? X

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Saline spray is good to use before Nasonex (which is kind of addictive It is more that it causes

Naturopath health shops have nasal drops with peppermint spray.

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Yes - I have a deviated septum (not Sjögren's related) and notice that I wake up to horrible nasal congestion always now. I have what is diagnosed as Myofascial pain - numbness and tingle with burning pain - and I'm sure it's coming from the dryness in and around my sinuses. But ENT did a CT scan a month ago and hasn't got back to me or my GP yet so presumably nothing untoward has shown up.

He didn't think saline spray a good idea at all but said a humidifier overnight and using Vaseline around the inside of my nostrils would help a bit.

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Do you think the Myofascial pain is more neuropathy symptoms or due to congestion? One article I read about saline spray said it can help moisturize your dry sinus but I've always known salt water to dry things out so that's confusing. I think my ENT prefers it only as a more natural decongestant to using chemical sprays.

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Hmmm I think Myofascial pain might be a cop out diagnosis like Fibromyalgia - but only know of it now having read my dental hospital notes and letters last week - I asked for copies!

Personally I don't like the idea of sprays and I trusted this ENT. He said to get a good humidifier and use Vaseline on inside of nostrils before bed. Following spells of nose bleeds I should use Naseptin (which always works a treat on inflamed, dry nostrils with sores and cracks for me) but otherwise don't mess about with nasal passages.

I've become aware of the morning nasal congestion since he pointed out the deviated septum - and since I started getting laryngitis and breathlessness again.

Yes I am quite certain that Myofascial pain is actually neuropathy - but these oral med people only think of Sjögren's and dry orifices - what can one do?🤷🏼‍♀️

I had a CT done of sinuses five weeks ago but have heard nothing since so can only assume nothing showed up to explain numbness? X

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I can see all those problems with a deviated septum. that often requires surgery to fix. Will you have surgery if needed? That isn't my problem though so I'm hoping it really is allergy and will get better as the winter moves in and less allergens around. I use Vicks vapor rub on my nose at night as it helps keep sinus clear. Never been told to by a doctor so it's probably not good for me. LOL

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lol I use Vicks too! I think it's probably better for us than spray as it doesn't go all the way up (unless you use a cotton bud to apply?!). The ENT explained that most people have a deviated septum to a degree. He hasn't suggested an op as far as I know. But GP has referred me to sleep clinic anyway to rule out apnoea.

I feel my deviation is quite severe as can mostly only breath through the other nostril and I'm a self taught nose breather! I feel this is the reason the front of my mouth isn't dry but the back of my mouth - where nasal passages end and throat begins - is very dry.

And having only one working nostril means sinus infections are more likely and also that the air travels more directly to my throat and larynx as I breathe in I think. And therein lies the big problem with swallowing and hoarseness I believe. When I walk I often breathe through mouth as not enough air goes through nose. Then I get such dryness in my mouth it makes me panic! This is how it all feels to me anyway. X

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ha! Glad I'm not alone on the vicks. some people look at me crazy about using it. I've never got enough air through my nose and always slept with mouth open which was ok before Sjogren's. Now I struggle between breathing comfortably and painful dry mouth. I spray Biotene in my mouth and hope it's ingredients are safe! LOL

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I had surgery for deviated septum. It has not worked.

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Oh dear I'm sorry for that. I wasn't offered surgery but would think twice about it anyway.

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Ps I asked him about post nasal drip and he said he thought unlikely for me as there was nothing much there to drip!

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I had pnd pre SS.

Now nothing. Face. And ear pressure.

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I used to have horrible burning in my nose before I started using the saline spray so i have continued with it and my nose is not dried up . I use the sterimar brand which ready made

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I do. I have dry ears (SS - Hashemotos) get pressure my ear is blocked. It's been months. But that can be fluid inner ear

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