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Adrienne Dellwo

What's Behind Noise Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome?

By January 8, 2011

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More and more, noise sensitivity is being recognized as part of fibromyalgia and chronic fatigue syndrome. It's a very real problem for many of us -- in a recent poll here, it was one of the top sensitivities people listed.

Noise sensitivity can cause problems at work and in social situations, or just about any time we're in public. It might be the volume level alone, it might be a repetitive sound, or it might be a multitude of sounds -- no matter the source, it can cause anxiety, panic, and even widespread pain as the receptors in our brains become overwhelmed.

In spite of the impact it can have on our lives, this aspect of our conditions hasn't been studied much. We do have evidence that noise can cause pain in us, but that's about it. Recently, though, a friend brought a condition to my attention (thanks, Shelley!) that seems to describe us fairly well: hyperacusis.

According to The Hyperacusis Network, hyperacusis is "a collapsed tolerance to normal environmental sound." Essentially, it makes you overly aware of certain sounds, usually within a particular frequency. It's often associated with tinnitus (ringing of the ears,) which is common in us.

The description really describes my experience. I can tolerate some loud noises fairly well, but others will drive me crazy. When I encounter those sounds, all I want to do is get away from them or make them stop! It's like they worm their way right up my spinal cord and put every nerve on edge. Not long ago, I almost had to leave a fast-food restaurant half way through a meal because the alarm on the fryer was broken and wouldn't shut off. I was close to panic when the awful bleating finally stopped. No one else seemed to notice it much.

So far, researchers don't have enough information about this symptom in us to determine whether it is or isn't hyperacusis, but I think it's worthwhile for us to investigate this possibility if our noise sensitivity is having a detrimental impact on our health and lives. A diagnosis could lead to treatments, reasonable accommodation at work, or a stronger disability claim.

Has a doctor ever mentioned hyperacusis to you?  Have you been tested or treated for it?  Does this condition seem consistent with your experience?  Leave your comments below!

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Comments
January 8, 2011 at 9:54 am
(1) Shawna says:

This is why I stopped going to see bands play at the biker bars. I love the music but when it’s too loud, I start getting panicky. SUCKS! Oh and loud t.v.s, crowded stores with loud people, parties in general, screaming kids, barking dogs, etc. I am not a hermit by choice!!! LOL

January 8, 2011 at 10:34 am
(2) Dominique says:
January 8, 2011 at 12:17 pm
(3) eevee says:

i used to manage my sons rock band but cant anymore : (

my neighbours have been driving me crazy and worsening my FM with drumming, constant DIY and screaming children !! sadly in UK there are stupid noise laws which means they can get away with it if its before 11am but i am hoping that proof of my FM being made worse by noise will let me get a noise abatement order on them

i already wear a white noise generator in my ear for tinnitus / humming so to have to walk round my house wearing earplugs WITH wireless headphones set to white noise over the top 24/7 is no way to live : (

if i go to someones house and there are loud people talking and loud tvs on, i have to leave

fibromyalgia is not treated as an illness in most of UK, i waited 20 yrs to be diagnosed after being misdiagnosed as mentally ill for all that time, i have a rheumatologist but he is useless and admits it is not even a rheumatology condition, so why send us to these “specialists”

i am about to do an article on the way UK sufferers are treated and would love to hear from others in the UK (especially Bedfordshire or Cambridgeshire areas), please email me
indigoeevee1972@yahoo.co.uk
(email specially set up for this so i dont mind it being published)
there is also another part to my study/article which i shall inform anyone who emails me about

i will of course send my results to this website : )

January 8, 2011 at 12:24 pm
(4) Nancy A. says:

I have to live with other family members, so I don’t have control of their noisy TV’s but thank God for my own remote control. I tape my favorite shows so I can skip the noisy commercials, but if I watch a show live, I definitely have to either mute or lower the volume when the commercials come on. The “normal” family members don’t seem to notice at all, but it is so irritating that the volume of the TV seems to double when the commercials come on.

I love my peace and quiet when I can just pet my cat and read or take a nap. I can’t say that too much noise worsens my fibromyalgia but it sure hurts my ears and gets on my very fragile nerves.

January 8, 2011 at 1:18 pm
(5) Fran says:

Ahhh, those little radios… I am driven mad in cars where the radio is on and someone is trying to have a conversation with me. I get so confused/anxious. And the crowds. I was never red hot at crowded conditions but I can’t tolerate them at all now. I have been reading that our microglia may be the culprit as they are in charge of dampening down sensation that is irrelevant to what we are paying attention to at the time. Thanks for all you do Adrienne. You are now daily required reading for me.

January 8, 2011 at 3:45 pm
(6) JohnBit says:

I have CFS/ME and I am very sensitive to noise; but what does that really mean?

1st you need to understand what “noise” is. Simply stated, noise is any undesired signal.

For example, when you talk about your computer’s wireless router, noise refers to that part of the received electrical signal that impairs your computer’s ability to support your network connection. It is referred to as the signal-to-noise level or signal-to-noise ratio.

The noise discussed here is acoustic noise – or is it?

I contend that in most cases (well at least in mine) the noise is information noise. When compromised by the effects of CFS/ME, my mind can only handle one verbal information source. When there are 2 discussions going on (for example, in a meeting at work), while I can “hear” them both, I am unable to process the information presented by either so I don’t comprehend and unable to process either of them.

Up until going out on disability last week, I always wore headphones in my cubicle at work so that I could keep my focus on the work I was doing on my PC. Without them I was constantly trying to remember just what it was that I was trying to do.

A white noise machine helps me sleep. If you don’t have one, or are traveling you can use a fan or set a hotel room’s AC unit on “fan only”.

January 8, 2011 at 3:46 pm
(7) S says:

Glad to hear that it’s not just me. I feel like such a wimp sometimes. And it’s especially difficult for others to understand because some loud noises don’t bother me; others quite palpably affect me.

January 8, 2011 at 8:01 pm
(8) Tina says:

When I was still able to work, my office building was next to the police station. Sometimes the police cars would be right under our windows when they’d turn their sirens on, and to me it felt like a sharp pain in the head, while to everyone else, it was just an annoying noise to be shrugged off.

January 8, 2011 at 8:46 pm
(9) Mindy says:

I think we’re sensitive to more than just sounds. Here’s a good site to visit – The Highly Sensitive Person
http://hsperson.com/index.html
You can take a self test there also.

January 8, 2011 at 9:14 pm
(10) Delere says:

I’ve had Fibro for 12 years and nearly all of that a problem dealing with sounds/noise both audio and visual. I too have experienced panic attacks and near panic attacks at certain types of noise. I often wear earplugs and sunglasses at the grocery store and other places that can get loud. Needless to say my social life is severely curtailed because of this. Live music, large gatherings, smaller gatherings where there are many conversations going on, are impossible not to mention the unexpected siren, buzzer, etc.

January 8, 2011 at 11:18 pm
(11) Mary Seroski says:

Wanna hear something strange??? I’m hearing impaired. Yet loud sounds really give me headaches! I wear a hearing to hear voices.

My in-laws turn up the volume of their tv. They have hearing problems. But my husband and I can’t stand it. We both have FM. We both are sensitive to loud sounds. But I would rather watch a show with closed captioning and no sound than with both. He needs the sound on because he can’t read the closed captioning being blind in one eye due to a stroke.

Loud sounds also give me headaches along with bright lights. Lately, the winter sun is so bright that I have been getting more migraines than normal.

January 8, 2011 at 11:36 pm
(12) JULIE says:

HI LATELY NOISE HAS BEEN BOTHERSOME TO ME THIERS TIME WHERE I JUST WANT IT SILENT IS THAT STRANGE OR WHAT.

January 9, 2011 at 1:01 pm
(13) Sheila says:

Currently my fibro is MUCH better than it used to be. However, when it was bad, I sometimes noticed sensitivity from too much stimulis period. For instance I was in the mall with my daughter and it was VERY busy. The music, noise from the crowd, shuffling of feet/bags It felt like I could hear every single noise in the place! Add the lighting, scent from the perfume counter, the sight of everything in the place and the feeling of being very crowded…I felt everything all at once. I imagine it was much like an infant who is over stimulated. It wasn’t a panic attack…but I did want to remove myself from the situation very quickly! This only happened a few times to me, but I will never forget it.

January 9, 2011 at 1:36 pm
(14) JSC says:

My husband has ME/CFS and wears Bose noise canceling headphones- expensive but worth it.

January 9, 2011 at 2:37 pm
(15) thomas Hennessy jr. says:

Adrienne,
almost all people with what we call CIND (Chronic immunological and neurological diseases, and/or NEI (neuroendocrine immune disorders) are hyper sensitive to MANY things. Dr. Paul Cheney, an expert in M.E. and CFS, uses Klonopin to help turn down the volume of these loud sounds, strong smells, bright lights, skin sensitivity and more. I personally believe that some toxic insult like a virus (possibly XMRV) or chemical toxin, or bacterial infection (like Lyme and related tick born illnesses) get into our brain stem and cause a stripping of the gears of the HPA axis. when we get stressed by a loud noise, a toxic smell, a bright light, it causes the HPA axis to spin out of control and these organs spit out alarm bells which causes tremendous irritation to our senses. Many of us wear dark sunglasses, or ear muffs or plugs, or simple avoidance of crowded shopping malls, concert halls, bars, loud restaurants, car races and the like. Best of luck, but suggest that your readers ask their doctors about small doses of Klonopin to held LESSEN *the misery that these toxic insults cause. Good luck! TMH

January 16, 2011 at 2:53 pm
(16) Jackie says:

Why add more toxic insult to your blood system? It might help in the short term, but it doesn’t cure anything. How about detoxing? Building your immune system to overcome the viruses? (You know there are more healthy people out there with XMRV than there are CFS patients with XMRV.) How about calming the autonomic nervous system response through other means… meditation, energy healing, brain retraining? How about not eating crap like MSG and aspartame that further overstimulates the neurons? These things work. I’m off of all 7 of my meds after realizing that toxic mold put my CFS into debilitating/disabled mode slowly over 5 yrs. Detoxing my life and body, eating healthy, healing my emotionally toxic brain, calming my sympathetic (autonomic) response, retraining my brain to naturally aim for health instead of panic and all the bad biochemistry that comes along with it. Stop reading articles from people who are still sick. There are plenty of people who have healed and can lead you on the right path.

June 25, 2011 at 4:52 pm
(17) Betty says:

I’m curious about the specific things you said helped to get you off your meds especially brain retraining. Where did you first learn about this, what type of practitioner did you see, what does this involve, costs? Thanks so much!

January 9, 2011 at 5:49 pm
(18) Cathy says:

Thanks for helping me feel less crazy. This has been a huge issue for me, causing me to feel even more isolated than ever before. It isn’t so much loud noises for me as it is just a limit on how much noise I can handle in a day. Whether it’s being out in the world (on the days I make it out) or from TV or music, I can’t tollerate more than a few hours of noise a day. The computer screen also adds to the overstimulation. It feels like my nerves are humming at first, all over my body, and just build from there. Taking neurontin has helped some, but thank goodness I’m a big reader or I’d be staring at the walls for the majority of the day and night. As you guys know, so much of my contact with the world is through TV or computer, so losing the ability to connect for the majority of my time as been really devastating.

January 9, 2011 at 5:49 pm
(19) ThisIsMyFibro says:

I am exceptionally prone to loud noises and certain pitches. But my result is not pain. I suffer vertigo and nausea. I take medicine twice a day (Topiramate) to help prevent it, but also carry with me syringes of a phenegran-like gel that can be rubbed on the insides of my wrist to help with the nausea when it hits so instantly. This morning was a particularly difficult morning at church with the music and then someone I later referred to as a “loud clapper” when talking to my husband. I had to sit down to keep from falling down with the vertigo. As someone mentioned above I do have two pair of glasses. I found a Fibro-friendly opthamologist and was given prescriptions for two pair of glasses. I have sunglasses for the day and then amber tinted lenses for inside or night time driving as well as drops to put in my eyes before I drive at night, Alphagan. I’ve written about it a few times on my blog. You can look under the labels “noise sensitivity” and “medications”. ThisIsMyFibro.blogspot.com

January 10, 2011 at 10:26 am
(20) Cheryl R-A says:

I had a “crash/flare” day yesterday, unable to tolerate the strong winter sunlight coming in the uncoverable top window, or even the sounds of the fireplace fan running. I ended up in bed for the day, something I seldom do these days. I, too, am hard of hearing, but at times certain sounds seem to cut right through me. One of the worst sounds is the gunshots on the hunting shows my DH so loves to watch. When I still worked (am now on disability from CFS and depression), the sounds, lighting, and other noxious stimuli would overpower me to the point that I had to escape to my dark, quiet bedroom. I’d tell my manager I had migraines, but that wasn’t always quite accurate. This sensitivity is something like a “full body migraine”.

January 10, 2011 at 11:48 am
(21) carin says:

i swear some ppl think im nuts when i grimace when i hear certain noises im lucky my husband is usually pretty good when it comes to recognising when the music is getting to me but he like my kids like their music loud and some of the time i enjoy it, i remember hearing a song on the radio the other day and the first few lines are repeated and it went straight thru my head and hurt like heck im glad its being more widely picked up on and looked into

thankyoux

January 10, 2011 at 12:47 pm
(22) Nancy Diaz says:

I was so happy to hear that I am not the only one who is suffering from noise sensitivity. I think my husband thinks I’m going crazy evertime I ask him to lower the volume on our TV. When we were young and dating I can recall the fun we had dancing at clubs and blasting the music when we cleaned the house. Now, however, loud noise, specifically noise from a TV and radio drives me insane! Thanks for sharing you story, it really makes me feel better to know that I am not the only one.

January 10, 2011 at 1:25 pm
(23) yvonne says:

I can totally empathise with this description. The sound that gets me more than anything is that awful music thats played in shops. I am ok for about 3 minutes, then I have to make a break for the door. I can’t stand it.
I dont like parties for the same reason, can’t listen to the radio, telly gets on my nerves too.
I can’t take a room full of chatter, for some reason womens voices drive me mad. Children screaming makes me feel like I want to escape. It actually hurts my spine. Loud voices and loud noises affect me.
Peace and quiet is what I crave.

January 10, 2011 at 10:07 pm
(24) Laura says:

I’m glad to read that I’m not alone in my extreme noise sensitivity and I, too, avoid noisy places. I’ve understood it partly as a tracking disorder, ie. I can not have a conversation and have music in the background…and I can not listen to music when a conversation is going on. It makes me extremely irritable and I feel crazy. I usually explain this to people and they try and accommodate my needs when they can.

If not, I just have to vacate the scene. Loud restaurants are another venue I just can’t tolerate.
Thanks for doing this ‘column’. I so appreciate it.

January 11, 2011 at 2:31 am
(25) charley says:

My problem with noise is that (1) my brain gets overwhelmed trying to filter out the extraneous/not intended for me info. My brain thinks it has to process all noises it hears! (Actually it is any stimulus – light, sound, smells, touch, taste) AND (2) Noises and/or the brain trying to process too much will lead to EXHAUSTION, sometimes lasting into the next day. At the time of the “event” my brain finally just shuts down and I am like a bump on a log – cannot interact with anyone.

Primary dx is CFIDS, onset 1992 and dx’d 1994. But I noticed this noise “phenomonon”?sp sporadiacally, as early as 1992 and by 1996 I had to give up live theater performances, symphony/concerts and movie theaters. And by 1998 could only go to restaurants during their down times with social group of 8-10 people. By 2004/?5 could only tolerate going out with 2 or 3 others. By 2008/9 down to only 1 person at a time. Of course that is when have rested the day before and planned no activity for at least the day after.

After seeing Tom Hennessay’s(?sp) re: Klonopin will investigate that. The forced social isolation sucks!!

January 13, 2011 at 1:38 pm
(26) Skyedale says:

The only upside to the hearing issue is I can tell when my other half is eating junk food. I can hear those packages open from the far end of the house. The thing that drives me crazy is the ability to smell things that others can’t. I can’t go to major department stores because of the fragrance department. I can smell it from two levels up and across the mall.

January 14, 2011 at 4:14 pm
(27) Marian K says:

Noise – aaaargh! Even ‘normal’ noises/sounds enter my brain like daggers. I sometimes end up curled in a feotal position with hands over my ears trying to block it out. I have to mute ads, hate sports noise, find going to the movies difficult and long for quiet.

When I’m tired it also hurts to think and trying to work out the answer to a question leaves me exhausted.

I’m hyper sensitive to bright light and sometimes have to wear sunglasses even inside the house if it is glary.

I also have difficulty with bearing the weight of shoes. Socks make me feel completely panicky as they are restrictive and at times even the weight of a sheet causes great pain.

This is sooooo much fun!

January 14, 2011 at 4:25 pm
(28) Fibromate says:

I’m sensitive to all kinds of vibrations, sounds included. Yesterday, I was at the department store with my mother. The dressing room she was in was located near the elevator shaft. The vibrations from the elevator going up and down made me dizzy. All I have to do is be standing at the door of the elevator waiting for it to arrive, and I get dizzy. It is really bad if I’m in a building with several of them running close by.

Sometimes sounds don’t affect me strongly, but then there’s times when a crowded, buzzing restaurant will settle in the base of my brain and I just want to escape. My tinnitus is very bad (I call it a migraine of the ear), and I had my hearing tested. The doc said my hearing was above average for my age. No one has suggested white noise before, but I usually had my radio on at work so I could tune out everyone else. I had to explain to my cubby mate that I was not ignoring her.

January 14, 2011 at 4:37 pm
(29) Deb says:

I love chicken wings — not just regular wings but BUFFALO chicken wings, There’s a fairly new place near my house that has great Buffalo chicken wings but I can’t go there. It’s a “sports bar”, I like sports — I’m a nut for hockey and I love several other sports — but not AT FULL VOLUME. And to make things worse, there are several different games on at times and each TV has to have one of them so the noise is horrible — to me, I guess, since the parking lot is packed each time I go by on the weekends. No bar is really comfortable for me — and we won’t even mention the regular restaurants. My son is wonderful about it, however. He is very good about reading my face and knowing when I’ve had enough of the noise no matter where we are. Shouldn’t there be a pill for the noise issue — take one daily thing so I can have my Buffalo wings??

January 14, 2011 at 6:22 pm
(30) jubilana says:

Great post. Thank you so much. I resonate with so many comments here. It is wonderful to read the experiences of others and realise that what i thought was my hyper sensitivity to noise is not my own brand of craziness!! My husband is ever so slightly deaf, but needs TV sound turned up to a point that is painful for me, and the adverts which play at a louder volume, we won’t even go there. I was grateful to read of the difficulty others had with managing two noise sources, like conversation in the car with the radio on as well. It is so hard for us to cope with that.

I will be more gentle on myself and I will mention all these comments to my DH!!!

Marvellous site, Adrienne. Keep up the great work.

January 14, 2011 at 7:35 pm
(31) Darcy says:

Thomas Hennessy – I was recently prescribed Klonopin/Clonazepam in a very small dose to be taken at bedtime as needed. During a discussion with my doctor, he asked me about ‘jerking’ and ‘bruxism’ – this is what led him to prescribe Clonazepam. Understanding that it can be addictive, I have only tried it twice in the past 3 weeks when I had an absolute need to have a better sleep. So far, so great! Not only did it help me relax and actually fall asleep but (despite waking a few times during the night), I also woke up FAR less sore and experienced very little pain upon rising. Knowing the ‘medicine’ behind this drug, I can understand how it has managed to give me such positive results. If they could make this drug in a non-addictive/non-habit forming way, I would happily take it every night! Of course, as I said, I have only taken a couple of doses at this point and time will tell if it continues to be so beneficial to me with continued intermittent use.
As for the topic of loud noises, for as long as I can remember I have been labelled either “the nose”, “all ears” or both (and no, they are not oversized at all haha). I can hear and smell things before most others can. My husband teases me … “If I have a burger for lunch, you can smell it on me the minute I pull up the driveway” … and my kids wonder how I can hear a quietly dripping tap over the noise of the TV and others talking. I have always thought it was just a result of my personality – I am detail oriented and pay close attention to things. Who knew this lousy thing called FMS could be the reason I have these “super powers”? Now, if only it would give me the ability to leap tall buildings in a single bound and do housework at the speed of light! haha

January 14, 2011 at 7:37 pm
(32) georgia says:

I’ve yet to see any posts with my problem which is my reaction to a loud or even moderately loud unexpected sound. I try to walk for about half an hour per day & should I hear a noise such as a car horn or even the car security beeps (for lack of a better word) while walking, I become very startled to the point where I almost trip (over nothing) or even lose my balance. I have yet to fall when this happens but I’ve come close.

Can anyone relate?

January 17, 2011 at 10:20 am
(33) pbaxter says:

I also have problems with loud unexpected noises. Last year I moved to Encinitas CA where they have a trains that run close-by the hotel I was staying. I went to get something out of my car late in the evening when a train went by. It was so loud that I thought

January 14, 2011 at 8:20 pm
(34) Tervlover says:

I used white noise machines for years … found out that ear plugs are the worst thing you can use … pink noise … you can buy a cd on the hyperacusis network web site … it works much better than white noise … i had a pair of audeo yes hearing aids that actually helped my tinnitus and hyperacusis … i made the mistake of buying a “better” used pair and they didn’t help … turned out just to be audeos … not audeo yes’s … the audeo yes’s did help – i couldn’t believe it … has anyone tried the Lyrics? the doctor tells me nothing will help (except generators, etc.) but the right hearing aid really does help … and my high-frequency hearing loss just keeps getting worse … i’ve had to walk out of Wegman’s, the mall, restaurants … awful … the tinnitus can drive you mad … prayers for everyone!

January 14, 2011 at 10:28 pm
(35) Tammie says:

Noise is one of the things that drives me most crazy. I just cannot tolerate it at all. Unfortunately, the only place I can afford to live (& really can’t afford even this) is an apt where noise can definitely be a HUGE problem. I have no way to escape it, and it literally makes me feel suicidal at times. (Don’t worry I am not going to act on that, but the noise does REALLY bother me.)

January 14, 2011 at 11:06 pm
(36) James says:

I have trouble with noises as well. The worse of them being loud overlapping noise. Such as a crowded room full of multiple conversations. To make things even worse are my severe chronic migraines which are not to fond of certain noises either. The response I have is generally increased pain & occasional disorientation.

January 14, 2011 at 11:29 pm
(37) Valetudinarian says:

I never realized it was a panic. Sometimes, if the noise is too much, it is one of the things that can make me snap. I started noticing it as bad lighting in a restaurant. Driving behind a stinky car has always made me sick.

Now I have several munchkins that love to play with their loud, mechanical or battery operated noise toys. The wooden toys are worse! When they all play around me, jumping, pushing a toy monster truck, bouncing a ball or hammering shape sorters, I have to tell them that certain toys are only for the playroom. Regarding noise and my kids, I have to excercise extreme patience to redirect them rather than telling them or yelling at them to stop.

I never thought about the kind of irritation noise makes for me regarding feelings, but it makes me feel panicky and sometimes angry. Sometimes the noise bothers me so much that I want to scream.

I have found the car a great place to be, especially alone.

January 14, 2011 at 11:40 pm
(38) Valetudinarian says:

Georgia,

If I am startled, sometimes, my heart will race as if I have run up a flight of stairs. Sometimes, I will go numb. Like my heart spins then stops, then numbness. I sometimes have to steady myself for a moment.

Oddly, I lose my balance and stagger occasionally without feeling dizzy or anything else!

January 15, 2011 at 12:56 pm
(39) wilted45 says:

Hello everyone, I don’t have much new to add. I share many of the same noise sensitivities. I have been in public places with much noise/activity going on and wanted to FLEE!! I have been in my home and others listening to their music, well it has just been extremely annoying. Is that were the term ‘grating on my nerves’ has come from. Sometimes this is much worse than others. Guess it comes along with the other sensitivities (smells, pain, feelings, emotions) I do want to add that sometimes in places where there are several noises going on, someone will say something to me, I will be looking right at them but I can’t UNDERSTAND what they are saying!! Its like my brain can’t process that. I have to ask them more than once, try not to frustrate them. Well thanks for hearing me out:)

January 15, 2011 at 4:12 pm
(40) Sylvia says:

Repetitive loud noise like children screaming for no reason, I tried to go out and prune my roses and this lady told her kid to go out and play, the kid is still screaming 2 hours later!! Makes me want to scream. What is wrong with parents today? I get sound amplification right before my migraines, not auras. I find putting away the silverware is so loud sometimes it is deafening, dishes too. Does anyone have that problem too?
Power saws that sound like the dentist drill that goes on and on.basketballs , hammers, seems like every summer someone gets reroofed around here and that takes days, or puts a new deck on….hard of hearing old people screaming at u and then everyone has to scream back so she can hear u. My father had to have the t.v. On high for 8 years to be able to hear it. To this day I cannot stand the wheel of fortune bells, like vanna but I figure I will end up in a nursing home having to listen to it someday. My sons love computer games. They each have headphones so they can hear there own games and so I don’t have to hear that noise too. Does anyone have problems with
Getting a repetitive song out of there heads after having t o hear it, or the loud commercials at night. I have to be careful not to listen to music after 7 p.m. Or it may get stuck on a loop in my head going over and over again like no talk radio all night and it won’t shut off so I can’t sleep. Live near an elementary school so every recess and lunch hour and soccer game there’s more screaming. Did not know it was near here when we moved here to get away from screaming kids in the apt. Complex we were at. Didn’t know I’d get sick and never be able to get another quieter house.I have had fm and cf scince 1995, but because I quit my job a year or so before I got sick, they said I couldn’t apply for disability. So 16 years alone with this and now no way to pay for college for my sons. It’s nice to know there r others out there and I am not a lone unicorn anymore.

January 15, 2011 at 4:31 pm
(41) Sylvia says:

Re BBQ, could u call your order in and have someone else pick it up or wear earplugs when u show up to pick it up? Just a thought. We seldom get to eat out anymore, we go thru the drive thru, as taking the kids inside to mcdonalds play land was too loud and triggered migraine the last couple of times and so I had to go out to the car and wait until they were done. I don’t like going in and being subjected to screaming bouncing kids and u know they never clean the tables very well. Or I will go
Once for my friends b-day to a reg. Resteraunt earlier like 4:45
To get there before the crowds come so u can hear your friend
Much better and enjoy the meal. I think u get better service that way to. I hate being subject to the music that u have to hear while u r on hold for 10 min. I hold the phone away most of the time so it’s not as loud or it doesn’t get stuck in my head, or music u shop by. I go to gardening Jurassic to destress

January 15, 2011 at 4:47 pm
(42) Margaret Golby says:

I love the programme “House” but nearly at the beginning there is a very high pitched “Scream/screech” . I always plug my right ear ( yes, I have tinnitus in it as well ) as tightly as I can. I also do exactly the same when the credits come on screen as they play the same piece of music again. Does this high pitched squeal affect any others on these brilliant pages ???? I’m in the UK and we seem to be far behind the USA in research of ME/CFS (another of my health issues) and Fibro. I think the male consultants think”Oh ,Oh another hypochondriacal female!!” I often tell my GP about the findings on your pages. Keep up the good work. It’s so reassuringto know I’m able to get answers from the USA.

January 15, 2011 at 5:46 pm
(43) sylvia says:

i wrote garden nursery to destress and the computer changed the word to jurrasic, why it would pick that word i don’t know. turned the automatic thing off. point was why do gardening centers play jazz music, the one byme plays acd over and over again. i was trying to plan a garden design in my head of what i wanted to buy with my b-day $ but the saxaphone music totally messes with my consentration and after 45 min. i had to ask the girl if she would turn it down or off so i could finish up and get out of there. i know of many employees that hate it too.
going to just bring my music from now on so i can concentrate when the in store sales guy gets on the microphone and goes on and on. when people with more than one dog start barking and get other neighbors 3 dogs to start barking over nothing. one dog barks the entire time the owners r away!
and my smell turned up when i got pregnant and never turned back off. finally had to get a skylight that opens so u can
get the cooking odors out of the house and fresh air in. wish we had had one when I was pregnant. the smell of meat cooking
still makes me nauseas. and yes I eat meat. i asked my ob/gyn when the smell thing in pregnancy usually turns off and she said 5 months. I have had smell sensitivity now for 16 years. and we r not crazy we r seratonin challanged and sensitive.

January 15, 2011 at 6:29 pm
(44) mimisue says:

Help! My heater is right outside my bedroom door. But, I am so sensitive to sounds, that I jolt every few minutes as it goes through its changes. I have a white noise machine, run a meditation tape, wear ear plugs, but nothing helps. I have to resort to a sleeping pill and keeping the tv on all night. I am afraid that when the few pills I have runs out, my new doc will refuse to renew them. These pills are from a previous doc, well the nurse practitioner actually. It seemed I got more sympathy from her. But, my insurance changed and had to move on. I will probably try for a new doc, anyway. Any other ideas?

January 15, 2011 at 6:51 pm
(45) Shelley says:

O…..M…….G ! ! ! Whoever said that about Vanna
White and those Wheel………of……….TORTURE
bells is RIGHT ON!! I have always wanted to
SCREAM whenever that show is on!! (Good thing
I can watch it with the sound OFF! I thought I
was the Only One on the Planet that couldn’t
stand her voice and those D*MN bells!) It reminds
me of the Seinfeld episode when Kramer kept
having seizures, not knowing WHY, until “Enter-
tainment Tonight” came on TV at Jerry’s house,
and it turned out the cause of Kramer’s seizures
was the sound of Mary Hart’s voice!! Every time
I’ve seen that episode, I’ve rolled on my bed
laughing, HARD, because it reminds me of my
aversion to Vanna’s voice! (Nothing personal
against Vanna; I’ve READ that she’s a lovely
person!) I can’t watch Jeopardy, either, but
that’s because of the Host, which is a whole
different topic!
Also, that “ping” at the beginning of the intro to
House, I find quite pleasing; how odd is that?

And whoever talked about the silverware clanging
while putting them away…………THANK YOU! Now
I KNOW why I can’t STAND putting away the dishes!
MAJOR light bulb!!
Bless the person who invented the Bluetooth!!
They’re the ONLY reason I can talk on the phone
without my OTHER ear hurting like someone’s
shouting at me AND driving a penny nail into my
Eardrum at the same time!
Thank you ALL for your input! Your comments have
given me quite a LOT of “Aha Moments” today!
And if it weren’t for YOU, Adrienne (once again),
the comments would surely not have been written
ALL in the same place!
:-O

January 15, 2011 at 8:41 pm
(46) Janet says:

Until I started on Cymbalta a couple of months ago, my husband scraping his breakfast bowl was easily the most painful and annoying noise around. Also don’t respond well to the television volume – the rest of the family seem to be able to sit in this cloud of noise, which only gets worse during commercial breaks! Glad I’m not alone…..

January 16, 2011 at 7:44 am
(47) Maria says:

Janet I am very much like you. My husband scraping a bowl or plate triggers me and especially the crunching sound while eating. I hate the TV loud and I am always turning it down low. Commercial breaks are the worse. I get anxious sitting in a cinema with people rustling chip bags and sweets. I also have tinnitus.

January 16, 2011 at 10:09 am
(48) NubbleTheCat says:

I have one that I didn’t see in anyone’s comments. The noise of a running refrigerator. I live in an apartment complex and I can hear other peoples refrigerators as well.

January 16, 2011 at 1:10 pm
(49) B says:

Many people prob think i’m nuts. For the longest time I had problems with the music at church and my husbands stereo. It was nice to hear its part of the fibro. I also had traumatic head injuries and with them one plus one does not equal two but more. We didn’t know which was the cause. I use soft earplugs and if that does not help ,I use noise reducing headphones. When we go for long trips ,they help tremendously. The road noise,rain and any other constant sound make me want to curl up like a ball. When it gets real bad I feel like exploding .

January 16, 2011 at 2:43 pm
(50) Jackie says:

What the heck is someone with CFS/FMS doing eating fast food? And why would that person qualify as someone knowledgeable enough about CFS to write articles about it? No wonder so many people aren’t healing from this. I have gotten back to where I can listen to music again; I’ve even been to a couple of concerts (wearing ear plugs of course). I still have trouble with noise on highly-sensitive days, but those are becoming less and less frequent. Of course you are going to overstimulate your nerves when you are eating fast food full of neurotoxic MSG, building your cells out of faulty trans fats, inflaming your liver with high fructose corn syrup, and eating gluten, which causes neurologic inflammation in many people. Yes, I’m about done reading this nonsense from the forever-sick CFS crowd. Oh well I won’t have any need to much longer once I’m completely well. Keep taking your toxic pharmaceuticals and eating your toxic food. My sympathy for this epidemic is fading fast.

January 17, 2011 at 9:56 pm
(51) Darcy says:

Jackie, congratulations for finding something that has worked for you. Just please bear in mind that most of us enjoy this site because it offers us knowledge, shared experiences and support. To belittle the lifestyle of others or the severity of their illness is not supportive nor educational. Previously there was a very interesting thread on “evangelism”, please feel free to look it up. Continued success on your road to wellness and not needing forums such as these any more.

January 16, 2011 at 3:49 pm
(52) donnak says:

Response to Jackie: I’m delighted to hear that you’re feeling better (really!), but you shouldn’t assume that just because this treatment worked for you that it will work for everyone. I’ve been gluten and dairy free for about 20 years (and avoid many other foods i have tested allergic to), eat a relatively clean diet (no fast food restaurants! altho’ i’ve never successfully been able to give up chocolate), have meditated and done yoga for years, and yet I still suffer multiple debilitating fibromyalgia symptoms. I’m better if i do these things–that’s why i do them!–but unfortunately, for me, it hasn’t turned out to be a cure. I have to admit, I’m troubled by your lack of compassion for people with fibro who have not found a “cure” and are still suffering.

January 17, 2011 at 9:47 pm
(53) Darcy says:

Kudoes for your diplomacy.

January 16, 2011 at 10:05 pm
(54) Wendy says:

My husband deliberately slamming our stoneware
dishes together causes me so much pain that i
have literally dropped to my knees and covered my
ears. He knows it causes me pain but does it anyway.
My hearing is so very acute that many years ago
I heard carpenter ants in a wall chewing on the wood.

January 17, 2011 at 11:48 am
(55) toni says:

Noise is an huge issue with me. But also it’s being startled by a loud noise where I literally jump. People laugh when I jump but it isn’t really funny to have it happen. I’m sensitive to smells too.
I’ve had to change seats in an auditorium cause the man next to me needed to wash his hair–it smelled! I asked my dr. about sounds, smells sensitivity and he said it was just peculiar to me, not fibro!
I’m sensitive to bright lights too! What a mess!

January 17, 2011 at 3:15 pm
(56) Lisa G. says:

Thank you for your aritcle. I feel that there is a link to my hypo body and being very sentative to noise. I don’t like to many noises levels going on at once. I definitely can’t take people constantly yelling or speaking in an extremely loud voice. I enjoy your articles. Best, Lisa aka HypoGal

January 17, 2011 at 10:46 pm
(57) sylvia says:

what I have done for years(because I too can not stand the noise of the oon scraping the ceareal bowls-grew up in a large family so the noise was multiplied) was use reg. size cool whip containers as bowls” actually they r from a margarine tub
that had pretty designs on it years ago. I have a husband who has to scrape it t o get every drop and kids who didn’t care. so while I am in pain in the q.m. waiting for my fitst bit of pain med to actually kick in, that’s one less little annoyance I have to deal with. I also have reg. ceramic ceareal bowls they can use in the microwave or to enjoy earing something else in a room far away from me whenever. It reAlly cuts the noise. if whoevers husband does that knowing it hurts, give him a plastic plate till he can grow up. no offense. the only thing I can think of for the silverware noise is using plastic silverware whi h I don’t want to or have someone else put away the dishes.

January 18, 2011 at 10:18 pm
(58) snowball number 2 says:

I too startle easily. my husband comes home and every single day has to have his chips and salsa, which normally would be fine, except for the rustling of the bag and crunch crunch crunch as he is eating. I believe that companies have been told to make their products bags thinner so they will break down sooner in the landfills or like that one brand that was on the news for trying to make the bag compostable and its so loud that it was news worthy. the company stoppeed making it for 3 of it’s potato chips but left one like that. I know he needs his lycopene so he doesn’t get prostate cancer, so I have repeatedly asked him to go eat in another room, that usually works.
does anyone else have aproblem with the noise those soniccare toothbrushes make? with multiple people brushing
it is repetitive, and after a min or so it sounds like a bee but amplified. i keep hoping they will make them quieter when they come out with a new brush system, but my hubby bought a new one that has an attached toothbrush sanitizer, but it isn’t any quieter. i use a reg. old toothbrush cause the vibration bothers me. i don’t want to sound like I am complaining, I just wondered if this affected anyone else or just me. luckily we don’t buy snack foods in plastic noisy bags, but he said that cornchips was good for him and they r baked so o.k. and if I hear the kids rattling a bag, I know it is junk food and try to steer them towards fruit instead. fruit is nice and quiet and healthy too. my mom just calls me the sensitive one of the bunch. my sister has very good hearing also and it takes it’s toll when your hearing is so good u can’t get to sleep. any little noise… she has endometriosis and other assorted physical problems. she says she feels like a snowball the way more and more things keep adding on each year like high blood pressure and things that could not be just in her head. i am snowball numer 2.

January 18, 2011 at 10:37 pm
(59) sylvia says:

scraping nails across the chaulkboard never bothered me but the sound of little girls screaming I just can’t handle. have tried ear plugs, they don’t work. and tried the noise cancelation headphones, but u can still hear thru those unfortunately.
the sunny days r few and when I am under stress I like to go pull weeds outside with the sun warming my back. obviously not in the winter, I tried am/fm headphones, but when I bent down they would always eventually slide off my head. tried several kinds over the years. Thank God for the IPOD, music lifts me away from the screaming neighbor kids and temporarily makes the pain seem less bad. I also need it to get thru dental visits when they seem to want to drill for a long time. can’t stand the noise of the drill. has anyone had a implant put in their mouth? I am curious about the vibration of screwing it into the jawbone. Some people can’t handle the noise or vibration. dentist said it was either that or a partial plate on the bottom. can anyone tell me what it is really like? he also wants to do top teeth near my sinuses.

January 19, 2011 at 3:05 pm
(60) lloyd says:

Have had several implants. It’s a marvelous technology that wasn’t available to my parents’ generation. You can always choose sedation if you can’t stand the drill sound.

January 20, 2011 at 7:50 pm
(61) Deb says:

I am so glad to hear my noise sensitivity is normal for someone with FM and CFS. Here are some of the noises that get to me: loud, piercing newscaster voices, the crowd noise of sports broadcasts, piercing screams of children. There are probably others, but that is all I can think of at the moment. And it varies from time to time. Sometimes, I have to turn the noises off or down; and sometimes, I feel like the least little thing will drive me up the wall. Thank goodness it is not all the time.

June 25, 2011 at 1:45 pm
(62) carroll says:

I cannot tell you how good it feels to know I’m not the only ne out there. i live by a busy road where people with very loud sterios on in thier cars go by making my whole body hurt. I get pain in my ears and my body seems to vibrate. i want to stop that car and rip out his sterio, The intercoms at work hurt my ears and I think squeeling kids are the worst. I work in a grocery store and cannot get away from it. Trains go by about 20 times aday right next to the store with thier whistle blowing….aaaahhhhhhhh! then I come home and want to watch quite tv and my neighbor has never grown up because he fires up his car that he put a very very loud engine and loud pipesin. he takes delight making so much noise for an half hour or more every evening . I want to cry becuase it causes so much stress. I have fibromyalgia and attention deficit disorder and it’s getting very hard to keep my mouth shut about his unnessesary noises. When I go to restraunts where there seems to be a million people screaming to talk over each other and all the screaming kids, I want to run away and cry. my family thinks i’m just hard to get along with but thats not the case. i want to go but it’s very painful..

January 20, 2011 at 7:55 pm
(63) Deb says:

Does anyone else have a child or grandchild with autism or asperger’s syndrome? Noise can often be painful for people with these conditions. It makes me wonder if there could be a genetic component there. By the way, I also have tinnitis…worse when I’m tired.

January 27, 2011 at 12:52 pm
(64) delere says:

I wear sunglasses inside if it’s too bright or visually noisy as I noted earlier.

My problem is it seems all the sunglasses I see in the stores are really not very dark. Where can one get a truly dark pair of sunglasses? Is there a particular brand or word/number that indicates darkness of glasses?

April 17, 2011 at 12:27 pm
(65) Carri says:

I’ve been sound sensitive with Fibro/Lyme/CFS since I was a teenager. But it’s gotten much worse as I’ve gotten older. I can’t take someone’s blasting stereo at all. My body literally short circuits, I have to stop whatever I’m doing, I starting shaking, go into some kind of state where I can barely speak to get help. And my neighbor has started blasting the stereo throughout my apartment. I can’t take loud music in restaurants, I can’t go to movies or concerts. The fire alarm in my apartment building nearly kills me. It’s like a physical assault. The sound sensitivity is one of the worst symptoms of this disease.

June 29, 2011 at 5:05 am
(66) Donna D says:

I went to watch my husband bowl with his league and had to leave early due to the noise of the large balls making me “ache all over” and increase my pain level ! I have had Fibrmyalgia since 1999-and the past 3 yrs have had extreme fatigue along with it.

July 20, 2011 at 6:05 pm
(67) Lois says:

I too however am very sinsitive noise but the worst of it seems to happen at night when it is most quiet. If my husbnad is reading in bed I can still ear him turn the pages of his book, through my earplugs and it sends a shock through my system. The smallest noise in the room or my own breathing can shock me. I describe it like a jolt of adrenaline surging through my body. I’ve never been tazed but I imagine this is what it must be like. It’s as if every defense hass been stripped away and every small noise is a shocker. I have ear problems as well with a clicking or painful movement in my ear with certain frequencies. It is maddening. I have used klonopin as needed and it can help with sleeping but as of late my symptoms are escalating and I’m trying to figure out who to go see . A neurologist? A psychitrist? It’s maddening.

March 24, 2012 at 12:55 pm
(68) Jeree P says:

So amazingly good to know that I’m not alone. Perhaps this is the place to admit that I’ve lost some feeling in my hand recently due to the fact that I actually…ahem…punched the fridge, after yelling at it to shut the flip up. I also now have a dented microwave from trying to get the back off it (I’d read that you can remove the bleeper that way). Noise is the bane of my life. But getting mad at the people (and things!) that are causing it just makes me feel guilty because I know that others don’t hear things the same way I do. Isn’t it weird when you cringe and put your hands over your ears and then see that absolutely no-one else is reacting at all to some godawful racket? I wear earplugs all day and all night and am actually afraid to go into some rooms in my house because of what I think of as noisy neighbours. I don’t have any answers. I wish I could train myself not to react to noise (like they do with police horses). Maybe just being tense and wound up all the time makes your senses super-alert. Part of the ‘fight or flight’ thing. Hard to relax in a world of noise. Anyone else buy earplugs in bulk :)

April 23, 2012 at 12:24 am
(69) bedding says:

bedding
A brand new Room With May

May 20, 2012 at 12:44 pm
(70) Erika says:

Wow! Your article resonated with me. Went to a wedding yesterday and the whole evening the “music” was so loud my ribs seemed to vibrate! I wanted to ran out of that place!
Today I am so incredibly fatigued and can’t think properly. And the funny thing is-i knew i would pay a high price for doing my husband a favor and going to the reception. Also the big crowd and the overpowering smell of red wine on peoples breath made me want to gag.

May 22, 2012 at 4:41 pm
(71) joni says:

i was in a car wreck wich put me in a coma& it seems like since my illness it has left me with very sensitive hearing ——- i cant stand to hear my mother or my brother drink coffee-the slurping( omg)

this one inpactulair comerical on tv — the woman is slurping & gulping

that drives me nuts

how strange is this, i cant stand noise but yet when i go to bed ——–i have to sleep with a fan on ( for the noise )
im an odd one

July 14, 2012 at 12:54 am
(72) melsy13 says:

For what I suppose was my entire life I have heard things all the time, like a constant “noise”, and up until recently, I have assumed it was normal. Not too long ago, my boyfriend turned on the tv, and I said “Ugh I can not stand the sound of a tv being turned on, it drives me crazy”. His response was what sound? He had no idea what I was talking about and that is what made me get on here and do some research. What I have found amazes me. Like I said I have always thought this was normal to hear a tv “turn on” and continue to hear the “noise” for a while after. Same is true of a radio. Certain sounds drive me crazy. Even when everything is “quiet” I have always heard something, I don’t know how else to explain it other then a hissing kind of like cicadas, sometimes almost whispering or talking. I know it sounds crazy, and for a while when I was younger I wondered if I was crazy. Then I decided everyone must hear them. Also loud noises bother me, like the sound of a hammer. Makes me flinch every single time, even if I watch the person. Also firecrackers, alarms, ambulances. Like I have always thought that’s just how loud they were and everyone else heard them the same as I do, but recently I have begun to doubt that. There was a oarade and ambulance after firetruck going down the street. Here I am holding my ears shut thinking Oh my god when will it end? People around me seemed to have no problem listening to them. Even the sound of talking, people eating (cereal especially) makes me mad, and I hate that I get mad but I can’t help it. Every “appliance” microwave, air conditioner, fans, vaccuums, etc go right through me. Everything has a “noise” or vibration I guess. Also, when I was about 12 I had been diagnosed with Bell’s Palsy, don’t know if the two are related and I know I said my whole life but I mean I don’t really remember much before that anyways haha. But I’m glad that I have found this info and now I can try to get some help.

July 15, 2012 at 6:10 pm
(73) zoe says:

Oh my…. I have suffered with tinnitis since i was a child as well as other ailments which were later diagnosed with CFS and Fibromyalgia… but in the last 6 months my other ear has started with tinnitis but very quickly became intolerant to noise, no rhyme or reason but difficult to cope with more than one noise influence at a time, ie two people talking or tv and my daugter asking me a question, i am not deaf but have difficulty to hear very odd as i do hear everything, nothing makes it better! But it seems i am not alone, phew…. im not going mad or loosing my hearing but why do we have to suffer all these debilitating ailments?! Never knew this was down to my above condtion…. well you learn something new every day! Thankyou.

October 7, 2012 at 4:41 pm
(74) Sandy watson says:

I too am sensitive to extra things going on in the room, talk, tv, radio, kids. Gets very confusing. My husband asks why dont I turn on the radio, I told him, I like the quiet. It is not so bad if I am not in a flare up. Right now I am in a major one and it is very difficult. Sandy

October 10, 2012 at 2:21 pm
(75) TooLoud says:

I am trying to figure out if there is something I can do for the tinnitus that I seem to have developed about 3-4 months ago and this horrible sound sensitivity. It’s really starting to worry me and I’m afraid that this tinnitus is going to be permanent. I’m not sure what is causing this.

I do have Lyme disease so I’m on some herbal drops for that but this started before that. I was on 30 mg of cymbalta and I noticed that the tinnitus started after I stopped taking the Cymbalta. I have since resume the Cymbalta at 20mg but I am still left with the tinnitus.

I took my dog to the groomer this morning and someone brought their dog in and the dog was yelping and screaming…OMG…I thought I was going to lose it! I seems to be getting worse by the day. I cannot go to concerts with my hubby anymore or even be in loud places. I went to breakfast with my daughter last weekend and I almost had to leave because it was so noisy!! – or so I thought…

Anyhow, guess I’m not alone. Please God…I am thankful for my hearing but please..tone it down just a bit!! And, taking away the hissing/ringing…please!!!!

November 20, 2012 at 8:05 pm
(76) Toni says:

Hi, I have had trouble with my ears for years starting when I was a kid (10 then it went away at 12) and didn’t really bother about it until my ears really started to bother me 24/7 like I have slight ringing in my right ear for about 5-10 seconds but its really loud and it makes me have a panic attack because I feel as I’m goign to go deaf which people say I won’t but are you sure? :( and that began after I was told I had wax build up in both ears but most in my left and after I used the ear drops, the same night I went completely deaf in my right ear and since then its never been right and now I have constant problems- ear infections, ear presure and now I’m becoming sensitive to some sounds that can actually give me head ache like the tv, games I’m on, peopel talking at once or shouting etc what can I do :( ((( :’( lol think I’m going insane xx

November 29, 2012 at 8:30 am
(77) Chad Sinclair says:

Sometimes randomly in school people will seem to start to get loud to me, and all the sudden I start to get this feeling of panic, and discomfort, like I need to leave the room and breath. And when there are multiple conversations at once, I can focus and I start to kinda freak out, and panic. I hate it so much.

April 11, 2013 at 12:01 am
(78) Deana says:

I can’t stand the sound of the pots and pans in my cupboard. Putting the pans away makes me physically sick (nauseous, dizzy, sharp pain, disorientation). My cupboard is always a wreck because I can’t bear to try to organize the lids or pans. The sounds when all of my grandbabies (7) are talking and playing makes me react physically. I squeeze my eyes shut, shrug my shoulders, clench my jaw and finally have to leave or shout “quiet”. It makes me feel awful. The sounds of the chairs on tile floors, bathroom fans…on and on. Like many others, I can’t concentrate, begin to panic and notice a sharp increase in my pain, particularly paresthesia which lasts well beyond the pain. I startle so easily that my family finds it amusing as if I do it on purpose. As a child I was so noise sensitive I would panic if there were clouds int he sky for fear there would be a lightening storm. I am thankful to know I am not crazy!

June 4, 2013 at 9:02 pm
(79) M says:

I wonder if anyone will figure out what causes noise sensitivity? I would give most anything to not have it. I just moved and have found that the sound of cars, trucks and motorcycles going by makes me want to jump out the window. It makes feel nauseated, depressed and as though I will never be happy again. Someone suggested I go to an ENT. I’ve had trouble in the past due to noise from upstairs neighbors. People stomping on my ceiling also makes me very ill. I can’t handle fragranced products either. And no one seems to understand or care.

July 13, 2013 at 3:38 pm
(80) Dawn says:

I am on hydrocortisone.
When I have a low level of that, the adrenalin which sharpens all senses dominates. I have been trying to cut down in the hope my adrenals have recovered somewhat from the problem of low cortisol. For what it is worth, when I am cutting down I am in tears if someone shouts near me and shocks me. I have the strong sense of smell thing too. It is all HPA axis stuff and I believe with FM that is where the research should lie. I am Gluten free, don’t eat fast food etc etc also.

Panic and anxiety are also a symptom of low cortisol. I am sure it is more complex than that but they really should do more research in this area. I crashed and had months in bed with low levels of hormones.

More Kudos for the diplomatic way people dealt with undiplomatic Jackie lol.

October 7, 2013 at 9:28 am
(81) Shelly says:

To “M”, I care. :)

October 29, 2013 at 10:09 am
(82) Aimee says:

Not only sound, but light, and smells and even touch. Anybody else?

December 20, 2013 at 3:06 pm
(83) Ashley says:

Hi! It’s so interesting to read this! I was wishy washy diagnosed with Fibromyalgia a long time ago, but I really think I have Chronic Fatigue syndrome, but I can’t go to the doctor because I don’t have insurance and can’t afford it! An now reading this about sensitivity to sound and even light is really interesting! I get very over loaded with sounds. I actually today am getting rid of my parakeets because the sounds they make are just piercing and give me so much anxiety it makes me want to cry, while no one else really even notices the noise. I can handle a loud tv if there is nothing else going on. But if there are people talking on top of that or trying to talk to me, I can literally feel my blood pressure rising! Or when all my nieces and nephews get together and are screaming and everyone is trying to carry on a conversation. I just have to leave because I want to cry , it’s just too much! I’m also sensitive to certain light. So nice to hear other people with this problem, and that it is connected with fibromyalgia and CFS.

January 23, 2014 at 3:59 am
(84) Lynne says:

Pots & pans are particularly bad for me. I’m sensitive to noise, light, smells & touch as well like others have said

February 8, 2014 at 12:31 pm
(85) linda says:

Doctors said tinnitus from all the rock bands and loud music, but after coma fibromyalgia got worse and now the ringing is horrible, sleep with white noise to drown out this crap I hear the electricity in the walls and music that I don’t think is playing. Everything gets on my last nerve.. people says I’m going overboard with this but it’s real…

March 4, 2014 at 5:59 pm
(86) Kara N says:

I have been struggling with CFS for 4 years but have had epilepsy for most of my life (17 years). Over those 17 years many things that did not affect me then, such as certain sounds, affect me now. The difference is that I do not just get headaches; I have siezures. At one point, with my CFS, my pain was so severe that I could not get out of bed. I tried Tylenol 3 with codine but it was not enough. Suddenly, my Dad found something called the GARD diet online, and that has changed my life as far as the pain goes. I am able to do many things I could not do before, although I still do run out of energy quickly. The point is that I was able to significantly reduce that amount of pain meds and am soon to be totally off of them. This diet has changed my life. However, the sound sensitivity has just started over the past year. My neurologist tells me to wear headphones, but that’s not a life to live. I’ve increased my epilepsy meds recently and that seems to have helped a little but not totally. The best thing to do is try. Try, experment with things that are unconventional, and maybe you might find something new. Nothing should be out of the question.
Since most of you are only suffering from CFS or some type of chronic pain, I recommend investigating the GARD (Glutamate Aspartate Restricted Diet) diet because it has helped me immensely with my pain.
There are many interpretations of the diet but the main parts that help me are grains,gluten, dairy, nuts, beans, corn, and soy free. Also, you can restrict the types of meat you eat. Chicken is the best, while turkey is the worst. I recommend you be strict with the diet for at least 6-8 weeks and then you can start adding a few things back. You might lose a few pounds too. ;)
Here’s the site to the original man that came up with this diet. (a veterenarian)
http://dogtorj.com/g-a-r-d/foods-to-avoid-foods-to-enjoy/

Good Luck!

March 15, 2014 at 8:51 pm
(87) Kerrie K says:

It has been such a relief to read this article and the following comments and to put a name to my suffering – actually mine and my sisters and I fear; my 8 year old niece. So many of your comments and symptoms mirrored my experiences; I too find large noisy groups intolerable – last weekend I attended a large wedding reception and at one point I had to escape to the ladies restroom for a bit of quiet – People sitting right next to me tried to hold a conversation with me and all I could do was smile and nod – I have NO idea what they were saying because I could not sort their words out from the dozens of other conversations going on around me. I too took a whole day to ‘get over’ the experience! This last Christmas, on the last day before my brother and sister-in-law and their kids were to leave to return home to Sydney; I lied and pretended to be sick and went home to bed rather than have to spend another minute in that extremely noisy environment. One thing that struck me about some of the comments was intolerance to persistent (not necessarily loud) noise. I have that too – a neighbor once had his car turned on and running – not even revving – and it seemed to go on for hours but was probably only fifteen minutes – I was in tears! My family was less than sympathetic which only made things worse. I can hear/feel the bass from music several streets over – even if the actual music is not that loud. Doors closing noisily (not even slamming) dishes clattering, loud crunching of chips, tacos, apples etc. Radios on in cars while people are trying to hold a conversation. Lawnmowers do not bother me but motorbikes do. Bright lights are not my friend, I have blockout curtains on all the windows in my house and they are always drawn when I am home. I cannot sleep with any sort of light in the room and have taken to using a slumber-mask – the best money I ever spent – other than my white noise machine.

March 16, 2014 at 9:13 pm
(88) Suzanne Accashian says:

I have had to change churches where we worshiped due to the loud music. The bass beat physically affects my heart. I get panicky and i go into melt down mode in tears. I have had many tell me just put in ear plugs. They just don’t understand. I don’t understand either however I have to live with it.

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