I have primary Sjögren’s only recently diagnosed. Live in UK.
I have problems with ears as Wax has gone quite suddenly and ears are popping and banging when I lay down although feel blocked . Used to use Audiclean spray about every 10 days until recently when Wax suddenly disappeared. Seeing GP next week but been using Earol olive oil spray to moisturise. Really anxious about this as winter is coming up fast here and weather getting cold.
Anyone else got this or any ideas on how to deal with it.
Thank you!
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Silver-Lady
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I don’t really have answers I’m afraid but just wanted to say that I have barely any earwax either. I have tinnitus 24/7 - told they aren’t related and never thought or bothered by lack of earwax although vestibular stuff/ dizziness caused by Sjögren’s related Eustachian Tube Disorder (I’m guessing), bothers me a lot.
I seem to wear so many layers these days and a hat has to cover my ears throughout winter.
So many apparently nuisance aspects to having this disease amount to such a lot don’t they?!
There certainly are a lot of negative aspects. I struggle to cope with low body temp, insomnia, chronic pain etc plus all usual dry issues. At 73 I find it all very overwhelming!
Poor you it’s a horrid disease. I’m 54 and was originally misdiagnosed with RA, before that hypothyroidism. I have had autoimmunity for most of my life so none of these symptoms you describe are too surprising to me.
The neuropathy everywhere and autonomic issues affecting my guts at both ends are my worst symptoms. And also the fatigue. The ones you describe I can’t recall not having ever to be honest. I think my Sjögren’s started when I was a child. X
We certainly suffer don’t we? I feel I’m probably luckier than you being older at diagnosis. Worst thing is my painful bladder since 40 but only got really bad after menopause. Been really bad for about 15 years now, As for Sjögren’s only found out this year, had never heard of it, but had been having blurry eyes and neuropathy for a few years. Nobody picked it up till now. Got to have cataract surgery soon. Oh the joys! We just have to plod on and keep taking the pills!
The irritable bladder(interstial cystitis) is very common in Sjögren’s I believe so they are probably connected don’t you think? As for the rest - even I find it hard to know what is age related wear and tear or Sjögren’s. But having Sjögren’s probably makes all additional wear and tear stuff feel much more burdensome. And how I hate feeling old before my time!
But then if you look at the admin Beverly’s recent hospital posts - then you might feel quite fortunate to have only things such as cataracts to contend with? It’s all relative of course but both my parents died suddenly at 73 so I live each day as fully as I can and try to take a glass half full approach.
I have blurred vision. I also have cateract probs but not ready for surgery yet. Interested in the bladder. ( I have vag problems. ) I don't know what is what.. I look on here and report back to GP. still waiting on my specialist appointment. I am having a tooth removed next week.
i have ear problems. the wax is dry and cannot clear. ( as we age this can also happen ) the thing that protects it from the inner canal via the Eustachian tube. a little shutter thing. gets stuck.
it is always itchy dry. massage the area above the jaw and glands. with vicks or eucalyptus. on the outside.
pre diagnoses I knew I had a very small Eustachian tube. I go to a place in Australia called Crystal clear ears./ DO NOT get your ears syringed by a gp. go to an ent and have them suctioned if necessary. but I read somewhere on here that time. and I used prednisolone. should fix this problem.
Don't use things like waxol. but oil should be ok. little bit. as my ears don't drain. it comes out ages later. but it cannot hurt. where as the waxol. will just be fluid stuck in your ear.
do you have sinus problems. my nose never runs even with a cold there is nothing to run. its all so weird. I use some saline in my nose. which helped the ears.
steam can help. see a specialist. ENT or Rheumatologist for advice. don't get water in your ears. it is not the moisture you need.
Thank you. I have since been to GP who said my ears are full of wax which needs softening and clearing. Don’t think they’ve been syringed for about 7 years as used Audiclean weekly till recently. Also spoke to rheum this week saying they are popping and feel stuffed and sensitive. She told me to visit GP! I’m using Earol pure olive oil spray. Not sure what to do next. It’s difficult. Don’t think I’ve got sinus problems but nose has been running a bit the last few days but no cold (I can blow fluid out to clear nose).
ok,. I cannot blow nose. yet I have a cold. but they are all joined together internally. so can get blocked. and don't go near the water syringing. there are places like crystal clear ears. com.au
Thanks I’m in UK and nearest Crystal Clear clinic is too far away. However there is another company called Ear Wax clinic and they’ve got loads of branches so thinking of going to one of those. Feels slightly painful at the moment and massaging isn’t helping.Our BSSA charity said syringing would be ok but I would prefer suction and there is a place quite near me.
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