Yes sometimes I get stressed out by loud music if I’m trying to concentrate on something.
I’m always telling my hubby to turn the tv down, or music.
Very sensitive to noise
Do you get migraines? My auras are sometimes just noise related.
Very much so..... I have to cover my eyes! Then I can relax!
Yes, I find myself watching less and less TV because of the noise. I get over stimulated very easily.
Certain noise and pitch drives me mental .
Yes, it can almost make me crazy!
Yes I do - plus I have constant tinnitus. Finally I learned that I have a certain frequency hearing loss which is causing this intolerance. The audiologist didn’t know anything about Sjögren’s/AI so just said it’s one of those getting older things. I think it’s Sjögren’s related though as I have almost no earwax at all.
I have white noise aids to wear and these do seem to help.
Same here....Lost high frequency hearing & have no earwax. What are white noise aids?
Here - got them off the NHS audiologist a month ago.
Called Resound Danalogic
Oh wow! So they are like white noise...to block out other noises
Exactly that. I can have the tv on, but it can't have sound. I thought it was menopause related, but perhaps not?
It’s hard to say isn’t it. My menopause was early and I’m about to turn 55 so I’m well past meno now but this only started last year for me.
I had autoimmunity since I was a child with Bells Palsy and BPV during my 30s and my sisters were both born profoundly deaf and my dad had hypersensitivity to sound also so I don’t think it’s age related for me - but hormonal changes are defintely related as triggers for autoimmunity
are the sounds monotone? that is how I learned I had Meniere's, with Meniere's you can not here among the tinitus and all kinds of other noises. Sjogrens can affect your hearing I am just learning after 5 years, it can cause tinitus, hearing loss, vertigo and all other sorts of things ask your rheumy about it and then find an ent that has a clue about auto immune
In Scotland where I live you can’t find Doctors or ENTs - just take the ones you get -just have to guess I have Menieres as well. ENT was a nice man but just blamed Sjögren’s dryness for everything after sinus CT showed nothing untoward.
I have fibromyalgia, chronic fatigue syndrome, swelling, got lip biopsy to verify sjogrens...nothing else ruled out sjogrens..so this will be to verify it and diagnosis me
I have to have complete silence to concentrate on anything
Noise sensitivity is common with fibromyalgia. I have all the same things you do and found myself getting irritated at work from the noise. Then I found an article about how those with fibromyalgia are sensitive. I am more patient now because I know it’s me. Try noise cancelling headphones if you can.
Yes I have sjogrens and also struggle with loud noise!
Wow!!! thank you for this, I thought it was just me!
YES!!! I have a house full of "techies" who love their loud games and music (if you can call it that sometimes) and OMG..that AWFUL "surround sound tv thing". I wear ear plugs sometimes....and I can't ever go to a movie, which rarely happens due to my being a "germ phobe" (I also have Primary Inherited Immune Disease, RA and Lupus plus some....). If I DO go to loud places and forget my ear plugs I'm stuffing tissues in my ears. I know the struggle.
I have two teenage boys so I understand exactly what you are saying. My 8 yr old daughter sings all the time. All those noises combined stinks
Its called Hyperacusis and it’s very common with Sjögren’s because of the dryness affecting our auditory canals and our sympathetic nervous systems
“Some autoimmune disorders that can affect the ear include Cogan’s syndrome, relapsing polychondritis, polyarteritis nodosa, Wegener’s granulomatosis, systemic lupus erythematosus, ulcerative colitis, Sjogren’s syndrome, and rheumatoid arthritis.”
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Yes. My ears are super sensitive and I have patulous Eustachian tube so I am miserable most of the time. Only diagnosed with sjogren's syndrome however.
I’ve noticed that I have an issue with smells too. Sometimes it’s so bad I leave the room. I just hate the sensitivity to noises.
My husbands chewing and crunching on food!
Omg this is the biggest irritation for me as well.
But I love him to death
Yes! I thought it was just me!
Yes!!! And my office is an open environment. No cubicles or offices, just 10 desks in a big room.
I’m just a googling person who likes to research stuff that’s happening to me.
All you need to do is put Sjögren’s and ear disorders or hearing disorders into search engine and this stuff will just come up!
Yup...all the time... sometimes I can't even listen to music and I love music.
Me too I’m always turning down the tv. I’m surprised my Ent didn’t mention a connection
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Get yourself tested for Lyme and co-infections. I have sjogren's syndrome and those as well. Once treated for the latter, my sight/ear issues abated.
Galaviz, could you tell me about your co-infections and who/how discovered it. Thanks in advance!
You need a LLMD, who will do clinical diagnosis and testing. Best is from Igenix.
Galaviz I’ve been tested for Lyme - negative. I’m curious about co-infections such as possible other bacterial infections. I respond very well to Amoxicillin but as soon as I go off it, get worse again. Thank you
dickman you need the Igenix test. Lab is in CA. The rest are not reliable. They also test for confections. Your experience w/abx is indicative that you probably have something going on.
Galaviz OK thanks. I’ll check into it.
Hope it’s okay to ask this but I’m just interested in how you can separate out Fibromyalgia and other functional stuff such as CFS from Sjögren’s? I am always firm that I won’t accept diagnoses of Fibro or IBS for myself now that I have a definitive diagnosis of Sjögren’s. Not that my specialists try but if they did..?
To me there seems to be no symptom, from Sicca, fatigue, muscle, tendon, nerve or joint pain to eczema, allergies, dyslexia, hyperacusis or stomach problems, headaches, hypersensitivity/ sensory overload, constipation and tinnitus that I can’t quite easily blame Sjögren’s for.
So I’m just curious about why some of you get given or accept extra diagnosis when to me Sjögren’s and autoimmunity covers all of it?
Where I live a diagnosis of Fibro or ME stops doctors from taking us seriously as they blame everything on anxiety and sometimes means that serious problems can get dismissed/overlooked?
I have a close friend who is a doctor. She says you get a fiber diagnosis when they can't figure out what it is. In her mind, there's no such thing as fibro.
Galaviz I have a doctor friend who thinks likewise. This is why I am curious as to why some with diagnosed Sjögren’s still think their symptoms relate to Fibro?
raelene because the patient/doctor relationship is, erroneously, based on trust. We have entrusted them with our lives. That's really the bottom line. So when they tell us what they tell us, we're inclined to go with the flow and believe them. Until we get burned and realize they are can be so very wrong. I have been the beneficiary/victim of the best and worst medicine has to offer. I question EVERYTHING I'm told now.
Me too! In UK they often write things about us on our notes and in letters to our GPs that we don’t get to see unless we ask - and even then...!
Like you I’ve been burnt and don’t trust any diagnosis I’m given unless I can see the evidence from a lab or specific tests.
Yes if we go to the movies I have to put in earplugs and while at home I have to keep the tv on low. All loud noises bother me:(
All three illnesses, and yes, noise and light sensitivity. I can be listening to a show then when my eardrums have had it, it's similar to a spasm that happens in my ear. It's strange, and the tv gets turned down.
Sometimes it happens at work when there are multiple loud conversations going on. For me, that's a nightmare because I simply can't turn them down.
I understand completely. Due to the design of my building, I listen to 5 other teachers teach and try to focus on my own teaching/students at the SAME time!! WE do not have the TV on and haven't for the last 17 years. If we all sit down to watch a prerecorded (NO COMMERCIALS as they are tooooo loud and it's unsettling for the tv to get SO loud all of the sudden while one is relaxing) that is the only time it is on....very intentional. It is also very rare. Maybe 3-4 hours a week total. I am super, super hypersensitive to sounds and just a bit with smells. We almost have all of the light switches on dimmer switches again (after moving again)......ah!
What about someone eating, Smacking, chewing, forks and spoon hitting bowls, popping and chewing gum, ticking , tapping, phone sounds, any repetitive sounds and visual also someone playing with Bao, chewing finger nails, shaking foot etc. otherwise known as misophonia and misokinesia ? I am thinking the answer is no. That sjogrens is only "sensitive to sound" I am just trying to make a connection
Germaine there are no rules around Sjögren’s. It’s a different disease for each sufferer - hence the term syndrome.
I have been totally aware of every bodily noise my body and others bodies near to me make for years and always feel sickened by my poor husband or sons munching, sniffing, snoring, scratching, farting or swallowing etc.
Who knows whether hypersensitivity is just me and my personality type or whether it’s Sjögren’s, or whether it’s me and my Sjögren’s combined perhaps? People on the autistic spectrum can have similar responses and autoimmunity and autism are thought to be linked now. I do believe I’m probably somewhere on this spectrum and increasingly I am learning that I have a processing disorder - almost certainly dyslexia. I imagine these all go together on a much larger spectrum.
I understand. I have chronic migraine, and certain noises are painful. I also find it difficult to concentrate unless it’s quiet.