I have Sjogren’s, fibromyalgia, and chronic fatigue syndrome. I have become highly sensitive to noises at home. Even the tv annoys me. I have a horrible time concentrating add in the noises and My day is shot. Anyone else have this?

67 Answers

haynie
Answered 6 months ago    reply

Yes sometimes I get stressed out by loud music if I’m trying to concentrate on something.


haynie
Answered 6 months ago    reply

I’m always telling my hubby to turn the tv down, or music.


rfaith
Answered 6 months ago    reply

Very sensitive to noise


Clift
Answered 6 months ago    reply

Do you get migraines? My auras are sometimes just noise related.


graggneta78
Answered 6 months ago    reply

Very much so..... I have to cover my eyes! Then I can relax!


farias
Answered 6 months ago    reply

Yes, I find myself watching less and less TV because of the noise. I get over stimulated very easily.

e_tobin69
Answered 6 months ago    reply

me too


esteemed_wheelchair72
Answered 6 months ago    reply

Certain noise and pitch drives me mental .


harrison_tiffany
Answered 6 months ago    reply

Yes!


bigler.esther
Answered 6 months ago    reply

Noise pollution!


CurrieL
Answered 6 months ago    reply

Yes


pfeifer.scornful
Answered 6 months ago    reply

yes


shameful.pelican
Answered 6 months ago    reply

Yes, it can almost make me crazy!


werth_raelene
Answered 6 months ago    reply

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.

ricciardi33
Answered 6 months ago    reply

Same here....Lost high frequency hearing & have no earwax. What are white noise aids?

werth_raelene
Answered 6 months ago    reply

Here - got them off the NHS audiologist a month ago.

werth_raelene
Answered 6 months ago    reply

Called Resound Danalogic

ricciardi33
Answered 6 months ago    reply

Oh wow! So they are like white noise...to block out other noises

werth_raelene
Answered 6 months ago    reply

Yes!


haddad_76
Answered 6 months ago    reply

Exactly that. I can have the tv on, but it can't have sound. I thought it was menopause related, but perhaps not?

werth_raelene
Answered 6 months ago    reply

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


freedamilam89
Answered 6 months ago    reply

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


werth_raelene
Answered 6 months ago    reply

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.


varnado70
Answered 6 months ago    reply

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


waldron.infuriated
Answered 6 months ago    reply

I have to have complete silence to concentrate on anything


resolved_sharyn
Answered 6 months ago    reply

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.


svisser
Answered 6 months ago    reply

Yes I have sjogrens and also struggle with loud noise!


bao.95
Answered 6 months ago    reply

Wow!!! thank you for this, I thought it was just me!


billington78
Answered 6 months ago    reply

Yes!


Teodora81
Answered 6 months ago    reply

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.

b_decastro
Answered 6 months ago    reply

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


werth_raelene
Answered 6 months ago    reply

Its called Hyperacusis and it’s very common with Sjögren’s because of the dryness affecting our auditory canals and our sympathetic nervous systems


werth_raelene
Answered 6 months ago    reply

http://vestibular.org/autoimmune-inner-ear-disease-aied

“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.”


ballenger.93
Answered 6 months ago

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c_wachter
Answered 6 months ago    reply

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.


b_decastro
Answered 6 months ago    reply

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.


bensonmerissa83
Answered 6 months ago    reply

My husbands chewing and crunching on food!

b_decastro
Answered 6 months ago    reply

Omg this is the biggest irritation for me as well.

bensonmerissa83
Answered 6 months ago    reply

But I love him to death


tcarper67
Answered 6 months ago    reply

Yes! I thought it was just me!


squiggly.thomasina
Answered 6 months ago    reply

Yes!!! And my office is an open environment. No cubicles or offices, just 10 desks in a big room.


werth_raelene
Answered 6 months ago    reply

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!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2639870/


crushedwrestlers
Answered 6 months ago    reply

Yup...all the time... sometimes I can't even listen to music and I love music.


hagerty_kimberly47
Answered 6 months ago    reply

Me too I’m always turning down the tv. I’m surprised my Ent didn’t mention a connection


deliriousdisappointed
Answered 6 months ago

This comment is awaiting moderation


galaviz
Answered 6 months ago    reply

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.

dickman.faded
Answered 6 months ago    reply

Galaviz, could you tell me about your co-infections and who/how discovered it. Thanks in advance!

galaviz
Answered 6 months ago    reply

You need a LLMD, who will do clinical diagnosis and testing. Best is from Igenix.

dickman.faded
Answered 6 months ago    reply

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

galaviz
Answered 6 months ago    reply

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.

dickman.faded
Answered 6 months ago    reply

Galaviz OK thanks. I’ll check into it.


werth_raelene
Answered 6 months ago    reply

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?

galaviz
Answered 6 months ago    reply

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.

werth_raelene
Answered 6 months ago    reply

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?

galaviz
Answered 6 months ago    reply

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.

werth_raelene
Answered 6 months ago    reply

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.


chandra.segal18
Answered 6 months ago    reply

Yup


hargis98
Answered 6 months ago    reply

Me too....


spindler66
Answered 6 months ago    reply

Yes


Biggerstaff_Ingrid
Answered 6 months ago    reply

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:(


mears
Answered 6 months ago    reply

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.


tenuous_gubbins
Answered 6 months ago    reply

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!


ballenger.93
Answered 6 months ago    reply

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


werth_raelene
Answered 6 months ago    reply

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.


demure.dawes
Answered 6 months ago    reply

I understand. I have chronic migraine, and certain noises are painful. I also find it difficult to concentrate unless it’s quiet.


billington78
Answered 6 months ago    reply

Me too!


alaniz
Answered 6 months ago    reply

Yes


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