CNS Lupus & Noise Sensitivity - LUpus Patients Un...

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CNS Lupus & Noise Sensitivity

Bellaflowe profile image

Hi everyone :) I haven't posted in ages, so I hope you're all well, or at least coping! I've been diagnosed with CNS lupus for a year and a half now, although I've had the symptoms for much longer than that. About 9 months ago, I started becoming really sensitive to noise. It's not all the time or even just when I'm having a flare, but it comes on very suddenly and even the slightest noise makes me want to scream and punch someone. I'll give you an example - if it suddenly comes on halfway through dinner with my boyfriend and I can hear him chewing or gulping, I want to smash the plates and smack him in the face. It's horrible. I have to either leave the room, go outside or if it's a formal occasion then I have to stay put and try not to show how I'm feeling. Thankfully, I manage to resist the urge to break anythinf or hurt anyone, but I have said some nasty things and screamed hell for leather a few times. I carry ear plugs with me wherever I go incase this noise sensitivitt comes on all of a sudden. My doctor doesn't think it's anything to worry about, but really she just couldn't care less and my family have started to notice as well. My mum gets really hurt, understandably, when I shout at her during an 'episode', but my dad tries his best to understand. One time, it was Christmas day in fact, when it was so bad, he went to his shed and came back with an industrial type pair of noise cancelling headphones. As soon as he put them on I started to calm down. I could feel the rage slowly leaving my body and a wave of calm washing over me.

It's driving me mad and I'm hurting the people I love because of it. I feel so guilty afterwards for the thoughts that go through my head when I'm having an episode. Does anyone else get this? I'd be so grateful if you could let me know your experience of this and how you deal with it. I can't be the only one.

Love to all and hope you're all doing really well. Suzy x

22 Replies

Hi, yes I have this. It's an actual condition called Misophobia, think I've spelt it correctly. It's hard to control your anger with it. I've got better over the years in controlling what I'm thinking & feeling. I was once taking an training session & a young lad was chomping down on boiled sweets. I snapped & shouted at him to stop crunching & moved the sweets away from him. Poor lad, I did try & turn it in to a joke, but it was embarrassing both for him & me. This made me realise that I had to have more self control over other people's noise. It's difficult & I can still feel my blood boil. I try to put my thoughts somewhere else or remove myself from the situation. Hope this helps you :-)

lupus-support1 profile image
lupus-support1Administrator in reply to smudge1980

Misophobia: An exaggerated or irrational fear of dirt or being contaminated by dirt or germs.

If you feel disgusted to the point of rage when you hear the sound of chewing, swallowing, breathing, throat-clearing and other common “people” noises, you’re not alone. You’re also not crazy. Misophonia is a sound sensitivity disorder, which makes certain noises intolerable to the sufferer.

Although this condition is primarily neurological, the experience of these sounds can cause psychological distress. The term misophonia was developed by Pawel and Margaret Jastreboff, American neuroscientists. Literally translated, it means “hatred of sounds.”

After ruling out any "medical" issues, psychotherapy may be helpful.

With good wishes,


Bellaflowe profile image
BellafloweVolunteer in reply to smudge1980

I can't thank you enough for your reply. I honestly thought that I was just incredibly moody and a total cow and that there was no explanation for why I'm like that. And now because of you I know there is a name for what I have and that I'm not alone! I have shown your message to my mother who has been researching misophonia all evening and I think she finally understands why I act the way I do. It's not because I hate her or I enjoy being nasty towards her, it's because of something neurological which I can't control.

I know how you feel about shouting at that poor young man, it's such a guilty feeling. I think I will continue with the technique for dealing with this the only way I know how... put my ear plugs in, say 'excuse me' and walk away until it passes. How long do your 'episodes' last? Mine vary anywhere between 20 minutes to a whole day or even two. It's so frustrating.

Thank you again, I am so grateful to you :)

Bellaflowe profile image

And Ros, thank you to you for explaining properly what this is and what causes it. I can't believe I didn't know this was a thing that other people experienced. I'm so glad I asked now. I am seeing a psychologist on Wednesday anyways for treatement for my CNS lupus so I will mention this to him.

Thank you,


lupus-support1 profile image
lupus-support1Administrator in reply to Bellaflowe

I hope your appointment goes well - if you would like to follow up with saying how you got on, please do.

With good wishes,


Hi Suzy, I can hear the relief in your message to know your not going mad. I'm 61 now but think I started with this in my mid thirtys, when I think I started with sle & siogrens. I've learn some self control by putting my thoughts & feelings of rage into other thoughts, like opening a box in my mind with good thoughts & places. You'll miss out on social gatherings if you don't learn a technic to control this. At least you've a starting place now & know your not alone, it will get easier. The other day on a bus journey I cld hear the sound of someone opening a crisp packet, I felt my self going tense & thinking please don't let me hear the crunching. Ofcourse I could, I wanted to snatch the packet of crisps out of the persons hand! Not wanting to be arrested I had to distract myself & looked out of the window & imagine a conversation I'd had with my son, a happy place. But I didn't feel calm till I got of the bus. Good luck with learning to cope & you will :-)

xx Patricia

Bellaflowe profile image
BellafloweVolunteer in reply to smudge1980

That's such a long time to have had to deal with this. For me it started after my symptoms from CNS lupus were getting worse. I was more tired, more sore, more moody, more everything. I had started hallucinating and becoming so forgetful. And then this misophonia started. I had already lost out on so many social occasions because I was so tired and when I actually managed to attend a friends birthday, I found myself gritting my teeth and trying not to tell her to shut up and stop laughing like that and eating like that. I thought it was another aspect of my mood swings and that I was just being irrational and angry. But recently I've started to see that it's just triggered by noise. It's noise that bothers me so much, not people. I have a neurologist, a neuropsychiatrist, psychologist and a therapist and none of them have a clue. I have had lupus for 13 years (I'm 24 now) and the hardest part of all of this is that it's taken over my mind now. My thoughts are not mine and my moods are not mine. I can deal with physical pain and exhaustion. I can deal with my joints aching and sleeping for days on end... but this is taking me away from me and I hate it. I will try my best to find new ways to cope with these things and at least I have a starting point now. I know what this thing is that bothers me so much and I know that I'm not alone. And that's a start. Thank you so much Pauline x


I think I have a milder form of this.

I really find certain situations difficult. It effects how I'm feeling and I'm very short fused.

Normally I don't say anything, well I never used to, when certain family members are being annoying but recently I told my brother in law to shut up. It was the noise it just got to me and i couldn't cope any more. I'm quite quiet and used to tolerate a lot. I can't cope with the kids now and I don't go in to the coffee room at work as it just winds me up. Luckily I haven't lost it yet but leave quickly.

Noise just exhausts me and then I snap

Bellaflowe profile image
BellafloweVolunteer in reply to Whathappned


It's nice to meet another person who understands how I'm feeling. And likewise I understand how you feel. That's how it started for me, finding some situations annoying that I never used to. Friends that I had, but now have lost, I could barely tolerate their shrieking laughter and loud singing. Even just the talking. I suddenly became aware of how much one of my friends said 'ehmmm...' before every sentence and it then became the only thing I could focus on. I didn't even hear what she was saying. Whilst all my friends laughed and talked, I became the quiet one in the corner who hardly spoke. They didn't know that the reason for it was that I was having some kind of a breakdown. My head felt like it was going to explode, my heart was thumping and I didn't know whether to scream, cry or hit one of them. When I got home, in quiet peace, I realised just how bad the situation was and that it couldn't be normal. I wanted to hit one of my best friends in all this world. For laughing. I used to love her laugh and it made me laugh, which then made her laugh more. And now, I have sat and worried all evening because my boyfriends boss and his secretary have invited us both out for dinner on Friday evening. A busy restaurant with two people I want to impress, for my boyfriends sake, and so much noise. I am 24 and I have already had a childhood taken away by this bloody illness. I spent a few years in good health when I was in my late teens and 21/22 and I just loved going to parties and having fun or going to farmer's markets and antique hunting. I used to bellydance. I loved life and it seemed to love me. And now I am panicking about going to a restaurant for dinner so much that I have cried all evening. There are days when I feel strong and I feel that I could tackle anything. Days when I want to go skydiving and swim in the sea in winter. And there are the majority of days when I can barely walk and I feel so ashamed of what I've become that I don't leave my house. I could deal with the pain and the tiredness, although that has become a right bitch as of late, but now that lupus and this misophonia has taken over my brain, I find life so difficult to deal with. I remain strong for my family as I don't want to worry my parents. I'm so sorry, I seem to have just poured out my heart to you. I guess we all need to do that sometimes when times get tough. Tell me, how long have you has noise sensitivity? Do you have any coping mechanisms? And how long have you had lupus? I'm guessing you have lupus anyways, I may be wrong! Sorry again, what a cry baby I am tonight! :)


I just wrote on here and lost it all. I thought I had submitted my reply but no.

It started a few years ago and it's worse depending on how bad I feel. So I try to pace myself but obviously that doesn't work at times.

It has improved as the meds have worked.

I'm 47 so my life is probably calmer socially compared to yours which helps but I have 2 children and one NEVER shuts up. I find this hard to cope with at the best of times, lol, but when I'm not good it's hard to stay patient. She's thick skinned tho as she just keeps talking no matter.

I also cope with constant tinnitus and some hearing loss which I'm sure has increased this sensitivity.

At work I have a lot of interaction with different people, luckily one to one in a quiet room but breaks can be hard. Sometimes if there are too many people I either can't tolerate the noise or it exhausts me. So I quietly leave and go to my room or go out for a short 'quiet' walk.

I do feel for you as there doesn't seem to be too many coping mechanisms other than being as stress free as possible by getting as much rest as you can before you go in to an environment you know could affect you

Big hugs

Take care

lupus-support1 profile image

To everyone here:

If you need to talk about anything, LUpus Patients Understanding & Support (LUPUS) was set up especially for psychological support at our other website:

You will need to open an account - and the date format is: nn-nn-nnnn where n=number.

Everyone is welcome and I can be contacted privately there as well. It is our experience that psychological support is rarely offered as part of our overall care. It is also our experience that doctors will refer to a psychiatrist which can have an adverse affect.

CNS lupus is particularly noted to affect our "mood" - either through inflammation of the brain and/or because it is "normal" to feel anxious and depressed at times.

In fact, not feeling depressed or anxious would indicate there is a problem. Therefore, don't hide your feelings - talk about them at LUpus Patients Understanding & Support (LUPUS).

You are NOT alone!

Be well!


I hope I'm leaving this in right spot ros.. The lupus understanding support

I have grown uber sensitive to noises... But also peoples rude behaviors when I'm in a place where I need to focus ( that last bit tells me this about control for me)

Somehow, my life being out of control health wise, I seem to getting vice grips on everything I can. Which is not attractive, nor healthy. I cannot control, Dr visits, return phone calls, waitress, people smacking lips or crunching ice.

I can say to someone who continues to do something unacceptable, that this inappropriate, and if you continue I will leave

Good boundaries and unhealthy snarls. I'm learning.

Love the ear plugs idea thank you!!

Bellaflowe profile image
BellafloweVolunteer in reply to cctexan

Hello everyone and hi cctexan, it's nice to meet you and to hear from someone else who understands how it feels.

Sorry for taking so long to reply to everyone. I had a few really bad days and a terrible migraine so I couldn't stand the light, including the light on my computer.

Thanks Ros for the links and for your comforting words. There are times like this when everything can seem so dark and unforgiving but it's nice to know that there are people who can understand how it feels to live like this.

Cctexan - I know what you mean about the noise problem. Everyone on this thread experiences it too. I also dread having to go to my appointments, going to restaurants and returning phone calls. I also cannot stand going shopping. I don't mean for clothes, because that can be avoided! But food shopping. I had to do that today and I ended up getting into an argument with a woman. She accidently rammed her trolley into my hip, which has been really sore and swollen recently, and it hurt so much. She said sorry and then continued on with her shopping and I gave her a really horrible look and said 'for god sake!' and she said 'well I did say sorry...' with such an an attitude. I honestly could have hit her there and then. My hip was aching and suddenly the noise became too much for me and I just wanted to get out of there and go home.

Sometimes it's really difficult not to come across as stuck up and rude when the noise sensitivity starts. For me, it just gets worse and worse and I have to escape to a quiet place. Ear plugs have been a god send for me. I keep a pair in my handbag at all times so that if I'm out and about and it all gets too much, I can just put them in and drown out the noise. I don't care if it looks a bit strange because it keeps me calm. So my advice to you is to always keep a good pair of earplugs on you at all times. Buy the more expensive ones meant for flying as they keep the noise out much better!

Sending hugs,


cctexan profile image
cctexan in reply to Bellaflowe

I had an ex friend grab my elbow hard during a meeting as I was not behaving properly in her eyes. It urt so bad and shamed me deeply somehow.

( I had suspected to the woman on the other side of me). Yes I was wrong. But to be grabbed like iwas a kid in church and granny was going to whip me!

The ripple effect was immediate and intense. I started flusing in shamed and lefgt.

After posting a warning about people keeping their hands to selves at pulic for my lupies on fb, this discussion started. My non lupies started thinking about what bumps from carts or slaps on ack do.

Then the heifer who grabbed my arm wrote a note... " apologising and blaming me " if my fingertip brushing you caused you excruciating pain, I'm sorry, but you were talking."

Ha-ha... No thanks.

Sometimes stress comes out of nowhere eh?

Bellaflowe profile image
BellafloweVolunteer in reply to cctexan

Oh that must have been horrible and embarrassing for you. My boyfriend has done something like that to me before. He grabbed my arm and told me to be quiet when we were out with his flatmates because I was 'interrupting' eventhough I was the one who was talking first. He was pretty drunk and just being an idiot but it was so humiliating for me because one of his flatmates is a right cow and she thought it was funny. I kept my anger in until we were alone and then I just erupted into a ball of rage. He has now learned his lesson that it's not acceptable to do that, ever. I've also had friends that have shushed me and embarrassed me in certain situations because to them I'm being rude when in actual fact I'm being truthful. I never used to be like that but as I've gotten older and since I was diagnosed with CNS lupus, I've become less tolerant of people and their bullshit.

That friend of yours sounds like a right sarcastic mare. Did you have to speak to her in person after that?

It's no fun being like this and I really miss my old self. I was a really happy and bubbly woman who liked to laugh and joke around. Now I feel like a complete cow. Too much stress!

cctexan profile image
cctexan in reply to Bellaflowe

I think I'm learning the true me now. I've always stuffed my feelings. To be polite. Maybe it's age. Maybe it's the lupus and other carp.. But I know I'm in pain and my character defects are coming out sideways.

It's not fair to my loved ones, I have to own that. No matter what they do. I don't have to behave like a jerk . I do have the right to keep negativity away from me. It's a necessity now. Stress can kill me. I find I go into a flare after angry tiffs or worse, stuffing my feelings.

Like that thing with that woman. I kept quiet so as to not make a scene in front of 35 people. But it ate at my guts for ,36 hours. Sheds the one who snarkily approached me online and I finally told her it was unwanted and inappropriate.

For me, who never stasnds up to people,this was huge. And it felt such a relief. I can't live in stress. I truly feel like puking and can't sleep. It didn't used to do this.

With lupus, it already causes some chemical changes, but I know it amps up my immune system to eat away at me internally. No one is worth that. I don't want to die over some bit$$

I practice mindfulness meditation where I can, you might try it? The anger has curbed but also my stress!

Nice to meet you

Bellaflowe profile image
BellafloweVolunteer in reply to cctexan

Yes, I've always been a polite person and turned the other cheek, no matter what people have said. I'm glad that you have found a coping mechanism to deal with your stress because like you, I also flare up after an argument or when stressed. My partner doesn't seem to understand that when I get angry or really stressed out, it affects me physically as well as mentally.

It's not fair to the ones we love to act like that, I agree. It's also not fair that we have to go through this and deal with all of this pain. I used to do mindfulness meditation, but it's been a while since I last tried it. You're right though, it is very calming. I think I'll start again :)

I try to do something I love everyday to keep my stress levels down. Like reading or watching a funny film. It helps me to stay calm.

Nice to meet you too :)

Hi sorry to hear about your CNS medical condition. I have SLE Lupus and Fibromyalgia has well as other medical conditions and yes I do suffer from noise I become irritated and just want to sit in a quiet room on my own. It was worse for me several months ago when I lived next door and had a tenant who lived above me who made a lot of noises for example dragging furniture across her floorboards with no carpets, having sex, banging doors I thought I was living in the war zone and I just shouted and started banging back it got so bad for me I use to turn my radio on early in the morning and listen to Smooth FM really loud then the noise would stop however I then started hearing scratching noises which was then mice waking me up early hours of the morning so I was so glad to move recently and now it is like living in heaven however I still do not like loud noises so it must be part of the medical condition which is so irritating and people just do not seem to understand they think I am too 'miserable' if only they knew which you do. I hope things get better for you for the future. :)

Bellaflowe profile image
BellafloweVolunteer in reply to miltonmadden

Hi there,

Thanks for your message and kind words. I'm sorry to hear that you too suffer from misophonia and that you have had to deal with the neighbours from hell. I have had loud neighbours in the past and been woken up by argument, shouting, laughing and partying in early hours of the morning. And they lived two floors down from me! That just tells you how loud they were! My bedroom window faces right onto the communal back garden though and they used to use the garden alot as they, and their friends, smoked alot. I don't know when they actually slept as they would be outside until 4am and then back outside at 7am, hanging up washing and the young son would play football and shout a lot. I couldn't say anything to them as they were actually lovely people and they became friends of mine. They invited me for dinner and to come over and watch films all the time. I was both relieved and saddened when they moved away, but the place is much quieter now! I now have new neighbours who are just as lovely and hospitable. Anyways! I'm glad you are somewhere much more peaceful now as it really makes a difference. The problem with loud noises is that they are everywhere outside. I actually dread having to go outside now and have become a bit reclusive, which I hate. It's something that only people who have experienced it can understand. It's like lupus I suppose. Just as difficult to explain and not many people can understand.

It's lovely to meet you and I hope you manage to deal with this annoying thing. I find ear plugs very helpful!

Hugs, Suzy

Hi thanx for your kind words. I am glad you understand but I thank god I do not have to deal with noise anymore with noisy neighbours. I live next door to a young girl with a loverly baby and she is so good. I am always expecting to hear her but I don't and it is so quiet. I am always expecting to hear noise, but I am so glad that I do not because I really can be very irritable when I do not have peace and quiet which is most of the time, but I can also have fun with my friends and I do like to go out and that helps sometimes seeing other people and getting fresh air and taking a deep breath. What helps me is counting to 10 and I also got told that meditation and yoga helps to relax people so when I go for Complimentary Therapy at Freshwinds in Selly Oak Birmingham. I am hoping to do all that. Good luck with everything and I hope you find something to relieve you from any problems with noise, but I do understand how you feel but I suppose we just have to find some way of coping with this and I find it will help me when I talk to my Counsellor next month take care and look after yourself. :)

I also know about this, my GP said it was hyperacuisis. I manage it using mindfulness and meditation. I have also told people about it if I think it will help such as in social situations. A lot of the time I just have to leave the room. I use earplugs and noise cancelling headphones but unfortunately they are not good for my ears. I have hearing loss in both ears now, which I think could be compacted earwax but the GP has given me an appointment to get them syringed. If the CNS lupus has caused some cognitive impairment, when the noise gets too loud we just get completely overwhelmed as the brain can't process it all.

CNS lupus can affect all areas of the CNS and can cause long term damage particularly if you also have the antiphospholipid syndrome. The good news is over time you can learn strategies to manage it and when your disease process stabilises the symptoms become less invasive.

Same for me. It is everyday and how agitated I get depends on the type of noise. Definitely anyone eating that is slurping, smacking and any type of groaning makes me insane. I am so happy others on this site suffer with the same and the fact that there is a name for it means it’s a real thing. I’ll have my hubby read these posts. It’s good to know for those of us who have this are not alone. I’m not a B%€¥h after all.!

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