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Adrienne Dellwo

Sensory Overload in Fibromyalgia & Chronic Fatigue Syndrome

By January 1, 2014

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Do you sometimes feel overwhelmed by your environment? Does it send you into a panic attack or make you disoriented? That's a common part of both fibromyalgia and chronic fatigue syndrome.

Back when my fibromyalgia was worse, I had huge problems with this. Grocery stores often made me want to run screaming - to the point that just walking in the door could trigger anxiety. I worked in a TV newsroom, which is one of the noisiest and chaotic environments I've ever seen. Phones ring constantly. A dozen TVs and radios play around the room all the time, on top of multiple police scanners. I used to thrive on that. Then, this illness hit and an ordinary day at work became a massive symptom trigger.

Even with fibro mostly in remission, this symptom is still a problem for me, but at a much lower level. Still, I had to skip out on a family holiday get-together because of it.

Here's what happened: We had a lot of people in a small space. It was hot from the hostess baking all day. Then, someone decided the TV needed to be on. Loud. So everyone was trying to talk over the TV, which meant the watchers couldn't hear and turned up the volume, which made people talk louder, etc. It got to the point that I couldn't focus on a conversation or keep my train of thought. I felt my anxiety level creeping up and before long, I had to get out of there.

While my husband gathered the kids and our things, I went outside where it was cool and quiet and cried for a few minutes, then got myself calmed down enough to go in and say good-bye.

What I Could Have Done Better

I can tell I'm out of practice when it comes to managing this symptom. I didn't have my calming supplements (theanine and DHEA) in my purse. I let myself get too wound up before taking a break from the situation. If I'd slipped outside 20 minutes earlier, it probably would have helped a lot. (In a different setting, I would have asked for the TV to be turned down. However, because of the people involved, I knew that wasn't going to happen.)

What I can do better next year is host this annual event myself. It'll mean more work for me, but I'm well enough to do it (as long as my husband and kids help and I schedule some downtime before and after.) I refuse to have a TV on the main floor of my house, so TV watchers won't be competing for the same space as the rest of us. We'll have more room, and I can have more control over the temperature.

That option isn't realistic for many of us with these conditions, I know, so more useful advice is to make sure you're prepared to go into a potentially overwhelming situation, escape now and then to allow your nervous system to calm down, and limit your overall time there. Sometimes, it might be better not to go - but, of course, sometimes you have to.

To learn more about sensory overload, why we get it, and how to live with it, see:

Do you have problems with this symptom? What situations tend to set it off? What helps? Leave your comments below!

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Comments
January 1, 2014 at 11:07 am
(1) elena says:

hi. Adrienne, you mention you are in remission? Please, tell us what did you do? what did you take as medication? I hadI been following your post since long time and I sometimes You mentioned your were in very bad condition, how did you manage to change your situation?, let’us know please.
Thanks
Elena

Happy 2014!

January 1, 2014 at 1:35 pm
(2) dfwmom says:

It sounds like it works well for you, but it would not work out for me to host such a large event. One of my strategies is to always have an escape route and a fallback position. Problems in these types of crowded holiday celebrations could be just too much noise and bustle, going too late into the evening, or it can be a situation where alcohol and family mix to create discord. Either way, even if I can tolerate it in short doses, I reach a point where I want it out of my house. Hosting an event can put me in the position of having to escort someone to the door, or having to politely throw the whole group out before they’re ready (“I’m sorry. It’s really getting late. I think we need to turn in”), where a different host might have allowed them to finish their party.

When it’s hosted elsewhere, I can just leave.

.

January 1, 2014 at 2:17 pm
(3) dfwmom says:

I remember my mother having massive panic attacks in crowded stores, and she dreaded crowded airports so much she stopped flying. I’m a bit that way myself, in some situations. And, I have a problem at work, which has excessive flourescent illumination. I had to install a canopy over my desk to ward off some of the excess lighting.

My daughter’s first major flare was within a few days of starting a new crowded noisy Jr. High. The environment was literally making her sick. She got better when we started using a virtual school. When she was required to go to a testing center with a huge crowd of kids to take a standardized test, a session that lasted six hours, she had a massive flare that completely incapacited her, making her unable even to read.

My daughter with fibro also has sensitivities to textures. She hates everything to do with paper and cardboard. She once described that going to school was like walking into a House of Horrors. Paper and cardboard EVERYWHERE, along with the bright lights, noise, smells, and constant bumping into her. No wonder she cried every morning for hours when I tried to drop her off there. Traditional schools are not capable of providing an appropriate environment for kids with central sensitivities. It would not be just an “accomodation” for these kids — it would be a complete, top-to-bottom change in every aspect of the school. I have now come to believe that kids without fibro still suffer from the excessive sensory stimulation of the school environment. All kids would be better off in more sensory-friendly environment.

January 1, 2014 at 6:52 pm
(4) MizzM says:

I also have sensory overload. I have to have an escape plan so I can leave whatever is overwhelming me and try not to expose myself to those kinds of environments/situations. It can really suck when it’s a work-related event and I can’t leave when I need to.

January 2, 2014 at 5:09 am
(5) Jen says:

Hi Adrienne,
I struggle with this symptom too and when it happens at a family event and I need to leave early, I can tell that people just think I’m making excuses to leave because I’m bored or something. They understand pain but not this!

January 2, 2014 at 12:01 pm
(6) Lois says:

Last Christmas i had a major overload at the dinner table. It was too much commotion..conversation, laughter, kids.etc. I left the table almost in tears.

This year, before the holidays, I sent my family an email explaining in detail what was happening to me and when I felt like all the conversation and laughter was “getting to me” that I would just leave. When I did this it meant that I needed to be alone. Generally, when I am feeling bad somebody wants to comfort me. Keep me company. I appreciate their thoughtfulness but, please, I need to be alone.

This year I managed the holiday and my disease with my disappearing up to a vacant bedroom, Once in the handicap bathroom stall when we were out to dinner

I also limit myself to only 1 activity per day. And it isn’t ice skating!
I did enjoy my family this season.

January 3, 2014 at 3:20 pm
(7) Kim says:

Oh my gosh…I thought those awful panic attacks were some kind of oddball thing that was all in my head! I don’t get them as often, but I DO get them, and when I do, it’s horrible. For the most part, all my symptoms are pretty well controlled (due to my own trial and error) but this is one thing I’ve never been able to deal with. You mention carrying your supplements with you…my question, do you take these every day, or do you take a dose when you feel this coming on? I consider myself “lucky” my family is small and get-togethers aren’t a problem. But the last time this happened was at a restaurant and we had to leave.

January 3, 2014 at 3:26 pm
(8) Sandi Deckinger says:

Movies theaters! I find an area where on the sides where people don’t usually like to sit and in the back, as far as possible from the screen, I wear my sunglasses for the brightness and earplugs for the sound. I go to the earliest show in the morning and, since I retired, a weekday.

Lately, I wait for the movie on cable.

January 3, 2014 at 3:45 pm
(9) Annie says:

Hi, Just wanted to say I read all the articles and comments, it keeps me sane, and also I feel less lonely with this horrible state we all seem to have ended up in when I read how many others are out there suffering. Sensory overload, lights, noise, especially noise, drives me mad in a matter of minutes. One example is a concert my husband was able to get tickets to. I waited eagerly for over four months and then in the hall itself I wanted to run out the moment it started. IT WAS SO LOUD! I looked around this huge auditorium and everyone was joining in and having fun, I simply sat there with my fingers in my ears until the end and vowed I would never go to another. Even the clatter of dishes and cutlery in some restaurants make me want to leave even before I have ordered. I have become a very short tempered negative person and I hate it. I hope and pray each day that I will learn to cope with this a little better as time goes on.

For me, my husband and the rest of my family do not take my illness seriously as I always make a supreme effort around them to try and be how I used to. That adds to the strain. It makes me feel undervalued and that I am exaggerating my problems and always making excuses. I seem to have the whole spectrum of symptoms, fibro fog, plantar fasciitis, light and noise sensitivity, pain in nearly part of my body and worst of all NO ENERGY. My sympathy to all of you out there.

January 3, 2014 at 4:17 pm
(10) tina says:

thank you so very much for this article! i thought for years i was losing it! walmart is my trigger! i’ve had several “panic attacks” there and have ended up sitting in the middle of an aisle with my hands over my ears!! my husband is wonderful in these situations. he doesnt completely understand but gets me out of there. now i dont go to walmart. at all! i missed all my family gatherings last year. i did make it for Christmas but it was 3 days after. we all arranged to go to my moms house. had a good day. needed that. thank you everyone for all the comments too. i know now i am not ‘CRAZY”. :)

January 3, 2014 at 4:31 pm
(11) sha says:

I love films but this year I found I couldn’t handle the emotional arousalstate that the films left me in. It was if I had no filter anymore….no “this is only a film.”"

I saw a French film with sex scenes between two women and I later vomited at home, thinking that I had gotten food poisoning. I was just upset by the lack of a love feeling in those scenes that were way over the top.

There isn’t a whole lot I can handle. In group situations, if there are unpleasant people or too boring or annoying stuff happening, I don’t go back. This is too bad because I am getting socially isolated.

But I can’t seem to help my sensory/emotional overload that’s new.

January 3, 2014 at 5:03 pm
(12) Rebecca says:

I’ve started carrying earplugs wherever I go. They help reduce the overwhelming noises. I can wear then without people even knowing i have them in. I wear my sunglasses to reduce the lights.
Sometimes these are enough to get me through a situation until I can get to a calmer, quieter place.

January 3, 2014 at 5:11 pm
(13) Sandra says:

Whether at family gatherings or in any busy store or restaurant , my symptoms start within 45 mins and I physically can collapse and/or can’t drive if I needed to. I get , disoriented, weak, nauseous , dizzy, body and head start aching. Does anyone else’s symptoms get this bad? I can’t even work because of this overload crap. I even tried volunteering and after 1.5 I had to leave before I fell down

January 3, 2014 at 5:29 pm
(14) Suzy says:

Adreinne, it sounds as if you have the same in laws as I I do. I always hate to have a tv on constantly at family gatherings before I got ill. If I startt feeling overwhelmed I go to an upstairs bedroom and lay down. My husband is very loving and wants to hug me to comfort me but although I love him dearly sometimes u don’t wNt to be touched. I have she’s also I did not know it held off these “attacks” I have gone to my GOP in the middle of being overwhelmed. I know it appears as if I have major depression. While sobbing I tell her that I will be on if I lay down I’m a quiet room. I stopped celexa I have been off of it for a month. sometimes go to the supermarket and wind up sobbing in the parking lot if I overdo it. My youngest son has asperger’s and I can now totally relate.

January 3, 2014 at 5:36 pm
(15) cat maneker says:

I have movement overload sometimes. I suspect it’s because my brain can’t disguinish distance/spacial awarenes. Anyway, traffic moving or lots of people moving will disorient me, sometimes so I feel dizzy. Add noise and it’s bad! I panic………..And if it’s a bad pain day it’s worse. I have to keep reminding myself it’s just movement, just noise and that if I go slow I’ll be fine.

January 3, 2014 at 6:42 pm
(16) blue says:

When I had to go to family events I would hide in the bath room for awhile so I could get some peace
I can not take any loud sounds or loud high pitched voices (even today certain voices sent me on edge and make me ill and this is comment with women;s voices)
Now I am lucky that I control the events and what I want to go to etc so I do not have this issue But I still can not tolerate loud TV or music
or lights-certain stores make me feel that I am going to get sick (wall mart!) I feel for those that have to go to events that you know are going to make you sick Hide in the bath room!!

January 3, 2014 at 7:15 pm
(17) Judi K. says:

I too am very, very sensitive to noise, light, and also smells. I live in NYC so noise and congestion are always present. It’s a hellish place to live for someone with fibromyalgia and extreme sensitivity to one’s environment. I am particularly bothered by – enraged is the word – by cigarette smoke. Hate that smoke!

To cope, I mostly always wear ear plugs when I go out. Even at home, I have to wear headphones to watch TV, so I can block out the sounds of low flying aircraft and my neighbors. I use white noise machines at night so I can sleep, and to also mask noise during the daytime. What a life! I hope to move out of NYC to a more peaceful environment.

January 3, 2014 at 8:22 pm
(18) barbara says:

I have a huge problem of hearing noises when I lay down in the bed at night.It sounds like someone is playing loud music.Our neighbors are all very quiet.It has to be me and the sensory overload.Also I can’t stand to hear anybody picking fingernails.chewing on ice or hard candy.Cleaning their teeth after a meal.

January 3, 2014 at 8:44 pm
(19) Julie Andrea says:

I retreat to the comfort of my computer in the master bedroom when it gets too much for me out in the living room. We have the TV on, people talking, the dogs playing, the fan going on the wood stove and my poor old mum tries to get my attention and ask me something! lol I feel as if my head is in a blender. As I curl up in bed, the little dog and cat join me, I place my hand on the cat and feel his purring .. and I am at peace. Be good to yourselves … Julie

January 4, 2014 at 12:37 am
(20) Dawn magness says:

Hi all , I’ve suffered from this overload for years now it’s got so bad that I now don’t go to any get together !! Friends have stopped inviting me I know they all think its in my head and I’m just being rude !!! I no longer drink alcohol so people feel I’m being judgemental of others who drink ! I’ve given up smoking almost five years ago after 30yrs of heavy smoking and some friends still smoke and feel that I’m hypocritical !?!?!
My family never ask if I need any help , over the years I’ve stopped arranging every social event so they think I’m being funny with them ???!!! Nobody asks if they could help arrange things with me ! No they have just left me out in the cold feeling really hurt and not loved !!!!
I would rather stay home than feel the way others make me feel about my illness !!!! I was told years ago by a dr that if a situation makes me stress out then DONT put myself in those situations !!! Say no and try and manage the illness I’ve done all those things and am now home alone with life happening around me ! I feel very hurt that friends and family couldn’t care less how I’m feeling !!! It’s as if because I can no longer do things for them anymore then they don’t want me in THIER lives !!!!!! I feel very hurt and used its as if my whole life has been a lie !!!!! All those people who only wanted me in THIER lives if I was useful to them !!!!!!!
It helps to know that I’m not on my own and this site shows me that others are out there and I thank you for that adrienne x

January 4, 2014 at 11:33 am
(21) Alyssa Savage says:

I have been diagnosed with NEAD… Non Epileptic Attack disorder. When I go into sensory overload I generally have this happen and it sometimes is similar to a seizure or I’m just out of it (looks like I’m sleeping) in movies, concerts etc. The neurologist said it’s because I’m in so much pain that my brain can’t cope with sensory overload so basically, goes bye bye! Without causing brain damage or possibility of death as in an Epileptic Attack. Still scary! I’ve had to stop driving because of it.

January 4, 2014 at 8:47 pm
(22) Kathy Rose says:

I didn’t know you could go in remission. I have to take Adderral to help me have energy. I had Hydrocephalus (Fluid on the Brain) and many surgeries which left me totally exhausted. When I forget to take my medication I will cry allot and not know why, then when it is to late to take the medication I remember. I will take 1 pill instead of 2, they are 15 mg a piece. The pain I feel in my elbows and knees, shoulders and neck is unbearable. I still get headaches when I’m stressed and when I do I have to lay down and rest. The Chronic Fatigue is just ongoing and without my meds it never stops.

January 5, 2014 at 11:41 am
(23) leorising says:

Ugh, I just bagged the holidays this year, did nothing. (I can do that because I have no kids, spouse, or family to speak of. Envy me, heh.)

Adrienne, I’m concerned that you’re taking DHEA in the evenings or PRN. It is a hormone and a steroid precursor. The body produces DHEA in the morning and then it falls off during the day. Most docs recommend you take your one daily dose early in the morning. You may want to think about if the “calming” effect is worth yanking your hormones around at the wrong time of day. Here’s a reference where the author discusses it: http://www.healthy.net/Health/Article/DHEA_When_and_How_Much_Dosing_Made_Easy/1201/3

Thanks for all you do, Adrienne! Your newsletters are always so helpful.

January 6, 2014 at 1:45 am
(24) Angela says:

This is a big issue for me

January 6, 2014 at 10:07 pm
(25) Peggy B says:

Last summer I started taking sublingual B12 (2500mcg) supplement because I use to wake up in a panic attack and had no idea why so I could not talk myself down. I am happy to say that I have had no panic attacks since then. It worked for me and it can’t hurt you so give that a try. Best Wishes to all who suffer from this.

January 7, 2014 at 6:19 pm
(26) James says:

My sensory overload behaves differently. It does not cause anxiety or panic, rather it causes pain. My migraines become much worse & by domino effect, my fibromyalgia & chronic fatigue. During a bad migraine, my eyes can see the frequency pulsing of fluorescent lights. Overlapping conversations & certain frequencies of noise increase the pain. It can also be very disorienting.

January 9, 2014 at 11:18 pm
(27) Jill Kaufman says:

Hi,
I really relate to this article as any situation where there are a lot of people and noise and confusion, I start to have big problems. I was in a bad car wreck that brought on the FMS, so I have a head injury and facial damage that further make it difficult for me to be out where there is a lot of stuff going on. I limit trips from the house with my husband and I have a signal with him. Wherever we go, when I can’t handle what is going on for whatever reason, I stand up and he knows it is time to leave and we say goodbye and excuse ourselves. In a way FMS is a blessing, because I wouldn’t have wanted to be somewhere too busy anyway, but wouldn’t have had a good reason to leave before. As for my FMS being in remission, I’m not sure that is possible. Each time I’ve been injured again, it’s gotten way worse in a flare up at first and then has calmed down some; but it never goes away and is easily triggered at the drop of a hat again. Then every year when it gets cold again, I have at least one major flare up, this year two, and am barely mobile again. I deal with it the best I can, but I don’t think this is remission. Glad you are doing better than me. Be very careful not to get injured or really sick again, it probably will get worse for you too. Or a lot of us believe it is a progressive disease no matter what we do. Best of luck to you!

January 10, 2014 at 3:32 pm
(28) Marian says:

Noise, light, the weight of shoes on my feet, the restriction of socks, crowds, even clutter – all have me wanting to scream and run away or cower int he corner whimpering. I also seem to pick up on other people’s tensions and anxiety and that makes me feel jangly. It’s hideous and no-one else really gets it.

January 10, 2014 at 3:33 pm
(29) Marian says:

I forgot to say – light and noise both cause pain – like daggers being plunged into my brain. Not the most pleasant of sensations

January 10, 2014 at 11:15 pm
(30) Debbie says:

Wow! Wow! Wow! This is the absolute FIRST time I have EVER heard someone else say what I have tried to explain to my family and friends for YEARS now! Not only them, but I’ve tried to understand it MYSELF!! For a total of about 10 years I worked in a retail (2 separate chains) environment. I worked during holidays, such as Christmas, the day after Thanksgiving, etc. I mean how much crazier can it get in retail than the day AFTER Thanksgiving!!! lol! But I handled it..without anxieties! But I step one foot into a grocery store to grocery shop and my anxiety level goes thru the roof!! It sometimes takes me almost 2 hours to get it done, which I do intentionally so I can try to control my thoughts. Its AWFUL! And you’re telling me this is related to FM?! OMG! I’m blown away! And slightly relieved at the same time! Thank you! Thank you! Thank you! ;)

January 11, 2014 at 12:00 am
(31) MVDEB says:

One of the main points of your experience is one of the most frustrating-total lack of consideration for your illness. SOMEBODY should have realized that the TV needed to be off, or down. After years with this problem, my brother in law, for some reason, “hugs” me a lot harder than he needs to, likes to “affectionately” squeeze my shoulders-it’s like a 12 year old teasing his sister, and now I just go hide when he comes around. Let me add that he’s almost 70, so WTF? A few years ago the landlord decided to do some pointless work on the outside of our small house. After about three days of banging, from one end to the other, I felt like I was inside a barrel being tortured. I ended up in the bathroom, with the fan and the dryer running, huddled up in the corner, crying. When our neighbor plays music I want to shoot him, or myself. The thumpthumpthump of the bass drives me literally nuts. Nobody else notices it, just me. There are days when clothes touching me makes me crazy. It drives my sister nuts when I wear a bathrobe most of the time-tough. Our other sister has been diagnosed with fibro, so her odds of escaping the many splendors are going down. I suppose that’s enough ranting for now. Hang in there, folks.

January 11, 2014 at 6:46 am
(32) Quaterra says:

This has long been a symptom for me but I didn’t understand the mechanism or thoughts on how it is disease related. I knew if was happening because of the CFS but not how it is tied in to our brain function. I find textures are a big problem on some days. A shirt that is fine to wear one day will be unbearable on another. I can only use bamboo sheets now. I also find sounds can be a huge factor. The simplest example is that some nights I can’t handle being able to hear my computer on in the other room. I can hear it vacillating in tone and usually have to shut it down to be able to sleep. I find having some wind chimes outside my house have a calming influence on my hearing – go figure.

January 12, 2014 at 4:39 pm
(33) Donna says:

Kathy Rose I too take Adderal or I wouldn’t be able to get out of bed. I had to do a sleep study during the day and they wouldn’t allow me to take the Adderal so I kept falling asleep and lost my drivers license for 2 years. I take 20 mg when I get up which isn’t until around 11 am and I am able to stay up until 9 pm. I watch TV or read until I get tired which is around 1-2 am. I too have trouble with noise and being around a lot of people. I stay home most of the time.

January 13, 2014 at 5:57 am
(34) CT Yankee in the UK says:

What sets it off for me:
1) Crowds in poorly ventilated and/or confined places (e.g. the London Underground, busy shopping centres, etc.)
2) Noise – it can be loud (jack hammer) or even just background noise (like in a busy open plan office or a café)

What helps me:
1) Dress in layers so if I get too hot I can cool down
2) I always carry a water bottle and Bach’s Rescue Remedy (not sure if that is available in the US) with me
3) I use my MP3 player and earphones to cope with background noise at work or if I’m trying to relax in a busy place
4) Making sure I’m as well rested as possible before events that might be crowded
5) Leave the scene for a few minutes and take a few deep breaths (for example go to the ladies room or step outside / sit on a bench)

January 14, 2014 at 9:24 am
(35) neeters says:

for all you female sufferers, no matter what age you are, you probably have too much Adrenaline, which is what is causing your anxiety and sensory overload! PLS consider trying a natural Progesterone Cream, in the recommended dose of 20 mgs twice a day, (can use much more if needed) and you will have INSTANT calm and remission of your problems. Progesterone will push out the Adrenaline/excess cortisol and will cure your problems. I know because I suffered for dozens of years since age 18 with this problem…until I reached my 50′s and started using Progesterone. Even my 18 year old son uses Progesterone daily for ADHD/GAD and it has turned his life around!

January 27, 2014 at 2:07 pm
(36) Linda Horncastle says:

I used to have a really bad time on the London underground 8 years ago and could only manage it on really good days which was rarely. It felt like I was in the middle of a very loud, crowded disco. I used to have to wear sunglasses and do breathing techniques to stop the sensory overload. Now thanks to the Alpha-Stim I have no problem taking the underground and enjoying a show in London, even after a day working!

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