Dryness issues: Dryness problems Hi all Wondered... - LUPUS UK

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Dryness issues

Littlemissmuffet profile image
5 Replies

Dryness problems

Hi all

Wondered if you had any advice for me. I've been tested for lupus but came back negative but posting here in the hope that someone can relate to my problems. I have under active thyroid currently at ok levels I think. Also have fibromyalgia. I've suffered for many years with dry nasal passages along with dry eyes and mouth. Consequently I get mouth and sometimes nasal ulcers. I can live with most of it if I can get a good nights sleep but the dryness of nasal passages keeps me awake and it feels like nothing is moving up there, it's all so dry and uncomfortable. I've been tested for sjorgens and lupus and both were negative. Over the years I've tried everything such as sniffing up water, sniffing pepper, nasal washes, nasal sprays, olbas oil, steam, steam machine, decongestants etc and whilst steam gives some relief it's only for the time I'm actually steaming passages. I'm desperate as I'm trying to care for my mum and need to get enough sleep so as not to be irritable. Rheumy wanted me to try plaquenil but gp wasn't keen, probably because I'm on so many meds already. I use what I think is a steroid nasal spray but Is that just adding to the problems by drying everything out ? Any advice?? Many thanks x

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Littlemissmuffet
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EOLHPC profile image
EOLHPC

Hello LMM

I've been hesitating to reply....imagining you have given the Neilmed products a good trial? These have been saving my hide for several years now...ever since ENT told me to use them. Over the decades, my biggest prob has been chronic sinusitis & nasal passage lesions due mainly to pockets of bacteria-driven sepsis causing constant blockages 24/7 etc (I say mainly because I think my vascular lupus & sjogrens are also involved in this). Neilmed sinus rinses & sprays have been a HUGE help....better than any OTC or prescription treatment or lifestyle techniques I've ever tried: reducing the nasal passage lesions & preventing blockages from getting a hold (but I had to spray 2x daily all the time, and also do full blown nasal rinsing several times a week)

But immunology put me on daily antibiotics several months ago, which has done wonders: greatly reducing the blockages to the point where now my sinus problem is mainly dryness & bleeding + am also getting more nasal lesions again (I treat them with the prescription topical antibiotic bactroban). So I looked into neilmed's dryness treatments & am planning to give them a trial soon.

I do hope you find a way to get relief from this dryness...please let us know how this goes

🍀🍀🍀🍀 coco

Littlemissmuffet profile image
Littlemissmuffet in reply toEOLHPC

Hi coco

To be honest I've only used the nasal wash a few times when it's been really bad. I will look at the sprays because previously I've tried making my own spray with boiled salt water but inconsistency is one of my bad points. I'm glad your sinuses have improved. It's awful and affects my well being so much. I can deal with painful joints etc but this really affects my sleep and makes me feel so unwell. I may ask gp for antibiotics too if I can I just end up with so many health problems that I often need to narrow it down to two things. Sad state of affairs these ten minute appointments. Thank you so much for your advice, it means a lot to have support and please don't hesitate next time 😀👍🙂

EOLHPC profile image
EOLHPC in reply toLittlemissmuffet

You're vvvv welcome....I do vvvvv much know what you mean about this sinus/nasal thing blighting your life...I thought my version of this would always be a blight😏....and nothing I tried until Neilmed products made much diff at all. The fact Neilmed is recommended by ENT made my ears prick up....then I read the Neilmed info leaflets & the reviews and realised it means the world to others like me. Yes conscientious use of the Neilmed rinses & sprays help with blockages, but now I'll find out whether the Neilmed dry nose gels etc help with that too. Will try to remember to get back to you on this 😉 🍀🍀🍀🍀

Littlemissmuffet profile image
Littlemissmuffet in reply toEOLHPC

Yes please do keep in touch. I'm going to try the spray so here's hoping 👍 I would imagine that the gel would stop nose sores at the very least. I dare say that there may be some infection there though too as my breath doesn't smell good and no sense of taste at moment but I'm ready for a new nasal routine. 👍 My ent surgeon told me the best way to clear it was by sniffing up water as hot as I could bear it but that was before these types of product came on the market. Seems like America gets all this kind of stuff first and then we slowly follow. Many thanks coco 😀👍

EOLHPC profile image
EOLHPC in reply toLittlemissmuffet

👍👍👍👍🍀🍀🍀🍀😘

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