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Adrienne Dellwo

Why Stuff Bugs Us So Much with Fibromyalgia & Chronic Fatigue Syndrome

By November 27, 2012

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If you have fibromyalgia (FMS) or chronic fatigue syndrome (ME/CFS), you know that a lot of things started bugging you after you got sick. Bright lights, noise, crowds, clothing tags, waistbands, textures, fragrances, foods ... it seems that just about anything can rattle your nerves or stir up your symptoms, and all of it is aggravating.

So why does so much stuff bug us? Two words: central sensitization. Let's take a closer look at the second word first.

Sensitization

A key aspect of both FMS and ME/CFS is that our bodies are overly sensitive to, well, pretty much everything. It's not that we're emotionally over sensitive -- it's a physiological thing.

Medically speaking, the word sensitivity is most often used when talking about allergies. When allergies form, it's because something in the immune system malfunctions and begins reacting inappropriately to a substance. The immune system has been "sensitized" to the substance.

In non-allergy situations, it's essentially the same but in a different system of the body. And that takes us to the first word above....

What Does "Central" Mean?

In this case, "central" means "central nervous system," or CNS. The CNS is made up of your brain, spinal cord, and nerves of the spinal cord. In FMS and ME/CFS, the entire nervous system becomes sensitized. To what? Anything unpleasant.

The medical term for those unpleasant things is "noxious stimuli." It can be a bad smell, pain, bright light, anything. Because our bodies are sensitized, they react more strongly than most people's. That means lights are too bright for us when they're just fine for other people. Same goes for noise, visual chaos, heat, cold, pressure on the skin, etc. Our nerves over-react to the things around us, and our brains basically throw a little hissy fit when they get the signals, and that makes it all the worse.

What environmental things really bug you? Does it seem like everything does? What have you done to cope with all these irritants? Leave your comments below!

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Comments
November 27, 2012 at 9:01 am
(1) Shawna says:

EVERYTHING bothers me! LOL I cannot wear jeans anymore, only cotton pants with a wide band of elastic or drawstring. (maternity clothes!) Underwear elastic has to be fully covered with cotton. (Hanes) Cotton sheets, cotton socks, etc. My skin will actually turn red and swell in places if I don’t have cotton!

All lights in my house have to be dim sometimes and going out in the sunshine can occasionally cause a migraine! Driving with the sun shining through trees in my peripheral vision can cause me a panic attack. It’s the strobe effect.

Sound- too many conversations or trying to talk over the t.v. confuses and angers me. Also can bring on a headache. Forget seeing a band or live music or even the movie theater. I had to wear earplugs last time I went.

Smells- some perfumes and colognes cause instant headaches or put me in a sudden bad mood. Weird, huh?

Multiple chemical sensitivities- everything has to be as natural as possible, externally and internally. Ugh! Fibromyalgia is not for the weak!

November 27, 2012 at 10:34 am
(2) Rachael says:

Elaine Aron (author of the book “The Highly Sensitive Person and The Highly Sensitive Child”) posted a comment on Adrienne’s site “Genetic Link to Pain Sensitivity in Fibromyalgia” April 27, 2012 which didn’t load. She said she would write about this subject in her next newsletter in May.. Here’s the article:

HSPs and Fibromyalgia, Chronic Fatigue Syndrome, and Other Illnesses Perhaps Related to “Central Sensitization” Elaine Aron

“Research suggests, according to Yunus, that CS has a wide variety of causes: Genetics (especially those genetic variations affecting neurotransmitters), poor sleep, infections, physical trauma, childhood or neonatal trauma, environmental irritants (noise, toxins, etc.), autonomic nervous system disorders, and probably other factors, not yet known, all can (but not always) create a “hyperexcitability” of neurons (nerves), and this in turn can (but not always) result in CS.”

Read more: http://www.hsperson.com/pages/2May12.htm

November 27, 2012 at 1:13 pm
(3) Old McGrama says:

Oh yes, things have definitely changed! I too cannot wear anything fitted, from socks to straps/elastic bands, unless they are loose. I can’t tolerate synthetic fibers, even a mix of synthetic and natural fibers drive me nuts! Light, noise, even being in a group of quiet people listening to a speaker can be enough to send me to a dark room by myself because of the stimuli. I wish more people could understand instead of judge… Thanks for the article-keep getting the word out!

November 27, 2012 at 1:23 pm
(4) Barbarella a.k.a. The Mad Cat Lady says:

Just about everything bugs me. Bright light, hot, cold (although I do heat better than cold), noise (even the humming of the fridge at night), artificial fibers on my skin (can only wear cotton or very soft material like silk, e.g.), smells (perfumes on people sitting next to me, cigarette smoke etc.), light touch cause most of the time it hurts but I just put up with it….. It´s like a sensory overload 24/7. I like to joke about it sometimes and say that these are my “SuperPowers”, i.e. I have super-smell and super-hearing, cause otherwise I´d probably cry….

November 27, 2012 at 1:30 pm
(5) Kate says:

The biggest issue for me has been lights that are too bright. My husband went through our entire house installing dimmer switches on just about every light. I find myself making laps through the house at night gradually dimming each light down as needed. It’s made a big difference at home but still struggle at other people’s homes when the lights are too bright. I’ve often had to cut an evening short if the “ambiance” isn’t muted- lights, music, etc.

November 27, 2012 at 8:22 pm
(6) Sabrina says:

Highyly sensitive to weather changes, I break out in a rash if I get sunburnt! My skin is always breaking out with one thing or another! Fybro is very frustrating!

November 27, 2012 at 9:12 pm
(7) Anne says:

Yes!! Bright lights for sure – I wear sunglasses whenever I’m outside, sunny or not. My kids screaming or playing loudly drives me crazy – same with when my students are too loud. I get easily irritated and agitated by too much going on.

November 27, 2012 at 9:48 pm
(8) Bobbi says:

Noise is probably the worst for me. Places like big box stores, malls etc are completely undoable. I get overstimulated when driving my car with the top down on a hot day. I once had to pull over and close the top, turn off the stereo and hug myself until I was calm again. I hear weird things when listening to music like cowbells and it really annoys me.

I can’t go to places like malls, concerts, etc. Lots of my CDs bother me. I work nights so the superhearing is a real problem trying to sleep by day. Usually it’s lawnmowers or leaf blowers, today the city was using a jackhammer to remove the sidewalk half a block from my apartment. I don’t know who was more bothered, me or the cat.

November 27, 2012 at 10:41 pm
(9) Norm says:

I’m not buying this. I’ve had CFS for 11 years, and I’ve never had “sensitization”. It is claims like these that make people believe you are not sick but simply neurotic.

November 27, 2012 at 11:22 pm
(10) Charlotte, 'The half-breed' says:

And people tell me to stop being a pansy.

I had some sensitivities before I got sick and since then it seems as if it all exploded and almost every time I turn around I discover another ‘irritant’ that I have to deal with.

Bright lights, loud noises, chaotic sights and sounds from large groups, chemical smells….. what is there that’s not an irritant. I can’t wear panties anymore and I’ve had to switch to boxers just so my legs don’t feel like they’re slowly being cut off. Acrylic fibers make me itch uncontrollably. And specific sounds just drive me up the wall! I never had this problem before I got sick. The textures and tastes of some foods make me gag/retch and feel sick, foods that I used to enjoy even.

And people think that I’m just making this **** up.

November 28, 2012 at 9:20 am
(11) hugosmum70 says:

it seems to me that i must be a constant irritant to my son when he refuses to even lift a telephone to call to find out what his teenage daughter is doing for Xmas so the rest of us can plan accordingly.(didn’t tell me till after that he was trying to do an online shopping order)… i am not psychic so how was i supposed to know?please, tell those of us who are without fibro why you can or cant do something when asked.dont assume we can see what your doing thru the pc or from 5 miles away.that causes more irritation.for us all.

November 28, 2012 at 11:27 am
(12) stephania says:

well norm maybe you dont have cfs, maybe you just have low vitiamens. or since you dont have fibro, you dont have sensitivities…
be thankful in stead of being a arse. since well over 90 percent of people that have fibro, have sentivities, it dont matter what you belive…
many peeps are diagnosed first by there sensitives….
mine is noise, light, and touch….
i cannot do the med touch.
i cannot stand the seam on my socks, so turn em wrong side out. cant deal with most seams, and cannot stand the that form on sweats or any fluffy cotton, when not properly cared for.. can deal with noise for time, as long as is a drone and i dont have to concentrate on any thing..
and dont last too long.

November 28, 2012 at 6:30 pm
(13) Jo Flanagan says:

I’m sensitive to light, noise, smell and food. Shopping is a nightmare and being anywhere outside can bring on panic attacks and migraines as can almost anything else at any given time. Even the meds the docs use to treat my fm cause problems

November 29, 2012 at 8:09 am
(14) Beth says:

I have a strong sensitivity to smell. Being in a very nosey room is way too much for me.
But also people like Norm are just to be ignored.

November 29, 2012 at 8:30 am
(15) Lynette says:

Dear Norm,

I have fibromyalgia and do get terrible headaches in shopping centre. Bright light does it as well. You should try wearing a bra. After a days wearing it hurts. This is not made up it is very real. Be glad that it does not affect you. :-)

AND for the other people I understand! Big soft hugs for you.

Lynette

November 29, 2012 at 9:43 am
(16) karen says:

Norm, I’m with you. I’ve had CFS for years now and yes, I am sensitive to light and smells. But only during a flare up and only to certain degrees.

November 29, 2012 at 9:50 am
(17) karen says:

With that said, yes, I do have the real deal. I think I just got lucky in finding the right doctor and the the right treatment. It’s all trial and error. But I do agree with Norm!

November 29, 2012 at 10:05 am
(18) skeptic says:

I just find it interesting…..not too many years ago, no one ever heard of fibromyalgia….and some doctors did not (and still do not) believe it is a legitimate condition. Now, they have cranked out medicine for it and suddenly everyone has it. I also have had people on disability (who look quite healthy and and actually are more able bodied than me) tell me that is why they are on it. Makes me wonder how many people fake it…since I don’t think there are any tests out there to lend it legitimacy.

November 29, 2012 at 10:07 am
(19) Cheryl says:

@ Norm and Karen,
I have both FM and CFS/ ME… There is such a vast degree in symptoms in Patients w/ FM/ CFS . Not just if they have them but to what degree. Norm , words like yours make it much harder for those of us who deal w/ a significant amount of symptoms and if they are mild to severe . Before I was officially diagnosed out of no where certain smell made me very nauseous ( not always the same smells) . And foods that I loved made me sick. I started to get pain in my eyes from different light sources as well as triggering migraines. very loud speaking will cause a crash. Wearing a bra is painful. And so on… Be very grateful that you have minimal or no symptoms surrounding CS. I have many friends who are bed ridden but don’t have all of these symptoms or maybe just a mild amount.

November 29, 2012 at 10:18 am
(20) Cheryl says:

@ Skeptic,
I am sure there are many who are misdiagnosed w/ CFS or FM . They are now developing more bio markers to add legitimacy . I have been through many blood test that show the decrease in immune functioning.. as well as a a cardiopulmonary exercise test , which has become a tell tale marker of diagnosis. That shows the presence of PENE. MRI , and so on. There is a new criteria for diagnosis. I don’t have the link on hand but I will have to post it here. I know that I am in the moderate level of CFS/FM. Due to these tests , not just symptoms and visible diagnosis.

November 29, 2012 at 10:38 am
(21) Cheryl says:

Here is the link to diagnostic criteria . There is alot of controversy over the CDC’s recently published suggested criteria. This one is the one that a doc who knows what they are doing will go by. http://niceguidelines.files.wordpress.com/2011/07/myalgic-encephalomyelitis-international-consensus-criteria.pdf

November 29, 2012 at 11:19 am
(22) Ahmed says:

i am Ahmed 26 years old i have always had angry conversations with my girlfriend about anything,but since i read this
i understand how stupid i have been,i apologize to you, i love you so much baby:)

November 29, 2012 at 11:38 am
(23) mumxtwo says:

I have ME & cannot wear a bra now, I’ve had to buy big loose knickers.
I hate sudden bright lights.
If the TV is on it has to be with volume low which drives my family crazy.
I retch at the smell of strong chemicals like bleach.
I am unable to drink herbal teas which I had enjoyed for years & many of my ‘old’ favourite foods are no longer palatable.
If I or someone else suddenly touch any part of my body it feels sore.

November 29, 2012 at 11:59 am
(24) Rachael says:

High sensitivity is a normal state shared by 15 to 20 percent of the population. As we know who have one, a highly sensitive nervous system is not necessarily a disorder. Their are two types of innate personalities found in all species, one of these is sensitive, the other is not.

Psychiatry in general frames high sensitivity in terms of a dysfunction (neuroticism), which it is not). Magnetic resonance imaging (fMRI) found that people with sensory processing sensitivity tended to have more brain activity in the high-order visual processing regions, and in the right cerebellum; the first evidence of neural differences.

************************
The trait of sensory processing sensitivity and neural responses to changes in visual scenes

http://scan.oxfordjournals.org/content/early/2010/03/04/scan.nsq001.abstract

November 29, 2012 at 3:15 pm
(25) Ivy says:

Just wanted to share that we are also sensitive to drafts. If traveling by plane, get an aisle seat. The plane’s air conditioning runs around the perimeter of the plane, so a window seat is pure torture!

November 29, 2012 at 4:18 pm
(26) Denise Mower says:

This not is for Skeptic…The medical community has known about Fibromyalgia for many years. I learned about it in nursing school in 1976, so don’t say no one knew about it until recently.

November 30, 2012 at 3:32 pm
(27) Sharon Owen says:

What really bothers me is when my husband and my daughter fight. A verbal aurgument between the two of them causes me such terrible side effects. My husband aurgues with my 16 year old about things that will never get fully resolved until my daughter reaches the age of 25! When an aurgument is underway, be it my family at home, or even a loud television program where people are aurguing, I tend to constrict my muscles without even being aware of it.

Then, a day or two later, I wonder why I have such a bad break out of cold sores on my lips … all because of an aurgement!

November 30, 2012 at 3:37 pm
(28) sadielvsblues says:

I have fibromyalgia and I am extremely sensitive to noise and crowded places. If I have to be exposed to either for an extended period I will have to take a nap to recover. My significant other doesn’t understand my low tolerance to noise and over crowded places. It is extremely frustrating.

I realize there will always be skeptics out there who think that people who suffer from Fibro/CFS are making things up and seeking attention. To those skeptics…I hope you never have to experience what chronic pain is like.

November 30, 2012 at 4:30 pm
(29) small doggie says:

I have had FM for 11 years and my sensitivities to all sorts of sensations have definitely gotten worse during that time. Some go back to my teen years, like sensitivities to smells, especially to candle shops (I hate those, or being forced to walk past a candle aisle in a store just to get where I’m going. I take a huge deep breath like I’m going under water and walk past as fast as I can.) Another pet peeve is definitely people who wear too much perfume or cologne, I feel like it is so disrespectful, especially when stuck next to them on a plane.

Anyway, sorry to have gone off on the complaining, but the real reason I wanted to post is a funny story. My husband and I were in a boutique a few weeks ago picking out jewelry to gift for the holidays. I would try on pretty rings or bracelets and then sigh as I put them back because I couldn’t even stand to wear them for two seconds. I told my husband I wished I could wear them but couldn’t and he said “that’s because you’re Fibrolicious.” I just started laughing at what a ridiculous thought and term that was. But so true! I am fibrolicious and he loves me for who I am. I have a lot of good traits that make me special, it just happens that wearing jewelry isn’t one of them. I loved him even more that day for helping me shift my focus off the bad FM parts and laugh. So now when I find myself wishing I could wear something I just remind myself I’m fibrolicious.

And I agree with Stephania when she said to Norm not to be “an arse!” No reason to put those less fortunate down, Norm. That’s not helpful to us.
Hugs to all you fibrolicious fibromytes!

November 30, 2012 at 4:38 pm
(30) Karen says:

My bugaboos are bright lighsts, especially fluorescents and loud noises. My most recent nemesis is the next door neighbor. He is divorced, lives alone and shortly after moving in, aquired one pit bull soon followed by a second. He has the dogs parked in the small side yard next to my bedroom in a zero lot line subdivision. They are about 3 feet from the wall of my bedroom. He works long, sometimes erratic hours because is a cop. The dogs sit out there and bark at every little thing or nothing for 12 plus hours. When I have a migraine or am painful, I can no longer count on being able to retreat to the peace and quiet of my bedroom. Their barking might as well be right in the room. There are no bedrooms in other parts of the house. It is going to result in legal hassles I neither want nor can afford but have no choice but to persue since he has ignored my request to talk to us about the situation. The stress just makes things worse!

November 30, 2012 at 5:33 pm
(31) Doreen says:

Everything bothers me now. Like many others, I can’t wear artificial fibers and when I do I itch like mad, get welts or rashes, and tear my skin up from scratching. If I weren’t still working I’d burn all my bras. Unfortunately, it is very difficult to find 100% cotton clothing (especially undergarments) that don’t cost an arm and a leg or that come in larger sizes.

I am using all natural products but unfortunately I’m sensitive to those, too. I love my natural deodorant with baking soda (and it works!), but I get dark skin that itches and peels if I use it every day. So frustrating.

I’ve always been sensitive to smells but now it’s worse. Very few perfumes smell good to me and even those will give me problems after a while. The smell of certain things such as diesel fuel and rubber tires will close up my throat, make me nauseous, and give me a headache inside a couple of minutes. I can’t tolerate any kind of chemical on my skin, especially those made with petroleum products.

The one thing that has gotten noticeably (and quickly) worse lately is my inability to tolerate too much sensory input at once. If someone is talking I have to mute the TV and if two people talk at the same time I feel like I’m going to explode.

Light doesn’t bother me unless it is fluorescent. I love the sun and can go without sunglasses unless it is shining directly into my eyes. I do, however, get sick to my stomach and a headache if there is any kind of flashing light, especially when driving and the sun is behind the trees. I’ve had that problem my whole life.

I am very sensitive to being touched as well. A hug is OK, but if someone pokes or elbows me or touches me in certain ways I hit the ceiling.

This illness is such a drag.

November 30, 2012 at 6:02 pm
(32) Ponder1 says:

I have unfortunately developed moderate agoraphobia due to my sensitivities. The doctor feels that since I feel overwhelmed by the crowds and chaos (noise and lights) that, that is the reason I devolped it. Also the fact that I have been in a lot of pain and going out to say a mall just increases it, I have learned to just avoid going out at all. I force myself to go out when I absolutely have to, otherwise I just stay in. I am not as bad if I have someone like my husband or 24 year old daughter with me but, I’d still rather just stay at home. It makes it difficult to get out in social situations, especially if there are a lot of people there. I have panic attacks every time I leave the house. I’m trying to do some desensitization tactics with my doctor but it’s not easy!

November 30, 2012 at 6:30 pm
(33) Elaine says:

I worked in a crowded room of people using computers recently. Several of the people who sat near me would eat chips or nuts from those noisy, crinkly bags. Between the noise of the bags and the chewing of the snacks I thought I was going to scream. They laughed at me when I tried to explain what the noise does to me.
I’ve also noticed that I can no longer watch sit-coms or game shows or singing or dancing contests on TV. The noise of the audience or the laugh tracks also makes me crazy.
Needless to say, I also need to move to a nudist colony because my clothes bother me so much.

ARGHHHHH…

November 30, 2012 at 6:32 pm
(34) Ponder1 says:

I have had fibromyalgia for about 30 years!! It is not something new! When I was first diagnosed it was called fibrositis. I have been living with pain and sensitivities for all this time. I don’t think it’s “in my head”. That’s how I’ve come to develop agoraphobia. Anyone else out there like me? I am beginning to feel like I’m going crazy but the pain is very real. I have been put on Cesamet (the marijuana pill) so that I can sleep at night without waking up every hour in pain.I am on a regimine of meds as well as nerve block injections every 2 weeks. All of this helps but it is not a cure for those of us who suffer. To look at me you would not know I am sick but I no longer do any housework or gardening which I used to love, or a lot of other things I enjoyed doing. Sometimes life just throws you a curve ball!! I have a handicapped permit for my car so that if I do go out, I don’t have to park a mile away because that just adds to the fatigue. I walk with a cane but I still sometimes get dirty looks. If only they could walk in my shoes even for a day!!!

November 30, 2012 at 8:53 pm
(35) Brenda H says:

For me, as with many others, it is bright lights. Although for me, it is a bright light inside that is the problem. Outside in the sunlight I am ok just as long as I have sunglasses on or it is not directly in my eyes. I have to also agree with Sharon Owen #27 post. When my 19 yr old son and my husband argue, or when my husband yells at our son, I just tense up and cringe. I never thought about how it could be affecting me or my health until I read Sharon’s post. Glad to know I’m not the only one, nor am I just “overreacting”. These illnesses are a long journey.

November 30, 2012 at 9:32 pm
(36) JudyP says:

I melted all my scented candles into woodstove starters two years ago. I finally gave away my perfume collection last summer. I loved the way they smelled, but as my FMS developed, they made my eyes water, gave me an almost instant headache, and burned my throat and lungs. I cried. I don’t think my need for attention is stronger than the enjoyment I gained from my collections of scented products. I still have to deal with the kids at school who think it’s smart to spray Axe in the air…

I also have problems with sound – especially crinkling sounds or many voices at once (such as the halls in the middle school I teach in).

I am so frustrated with the medical specialists and other people in general who judge me negatively because I have this diagnosis. I work more than full time at a job I love, I mostly maintain my home, including yard work, finances, shopping, cleaning, laundry, and sometimes even car repairs, as well as helping my husband with his medical issues (that don’t hurt as much but are more lethal than FMS) by myself. I pay my own medical bills, as well as my husband’s. It hurts my career that I don’t have the energy for the social piece that goes along with advancement in my building, and I’m usually in pain, as well as having headaches almost everyday.

November 30, 2012 at 9:34 pm
(37) JudyP says:

To sum it up…I feel lucky compared to people who have more severe symptoms with their fibro, and I don’t doubt at all that many people DO have worse symptoms. The reason? I didn’t used to have these symptoms at all, and I thought the same way as Skeptic (although I never felt compelled to say it out loud) : Until my body started behaving in odd ways, and I was diagnosed with FMS. I never believed I could feel this crappy and that so many of the goals I had worked years for could now seem so distant.

I am fortunate that my husband is a good, kind, man, and that my family at least tries to understand. Most of my colleagues are supportive as well, although confused by how much variability I have from day to day in terms of energy, pain, and thinking ability. My PCP is also a good diagnostician who is willing to reconsider her diagnosis of me when evidence points in a different direction.

These people have been great, but nobody (except my husband) really has changed how they support me. I’m okay with that. But it makes me wonder…

Malingering? What on earth could I possibly get out of it?

November 30, 2012 at 10:25 pm
(38) AnotherName says:

I have often wondered which came first, the chicken or the egg … or, this case … did I become highly sensitive to some things because of Fibro or do I have Fibro because, in part, I am highly sensitive.

November 30, 2012 at 11:58 pm
(39) Carol says:

I am not sensitive to very much, other than the allergies I’ve had all my life. However, occasionally a particular noise will just drive me up the wall. It can be a noise that usually doesn’t cause me a problem and then – wham – it drives me nuts. I simply can’t stand it. And it’s different noises. Sort of like the pain that moves from place to place, the noises that I find offensive can be almost any noise at any given time. It’s just plain weird. Thankfully, I am not bothered by this too often, but when I am, it’s gosh awful.

December 1, 2012 at 12:31 am
(40) April says:

First I would like to say people like Norm don’t belong on ths forum if you are going to insult everyone.

I personally have been overly sensitive my whole life. My sister thinks I am nuts too but now she is starting to have health problems too and I think she is starting to believe me. I forward to her articles about how science is starting to prove that these things are real since that many people can’t all be nuts!

My bf and I constantly argue because I am sensitive to loud music and it makes me clench and feel like I am sitting next to one of those huge concert speakers. I can’t stand any itchy material in my clothes like lace or wool and can’t stand anything on my neck like a turtleneck shirt. I don’t go outside much because I hate bright sunlight and loud noises. When the people upstairs rock on their rocking chairs it makes me want to run away screaming. I have to wear noise canceling headphones a lot now because every little noise grates on my nerves. Even those aren’t strong enough. I have trouble sleeping too because I hear every little hum or noise.

I agree with Shawna on the jeans and only wear elastic waisted ones. I totally avoid malls as they make me feel like my blood pressure is gonna blow. I can’t stand being around lots of people as it is overwhelming for me.

Basically I am miserable everywhere and every day and my true wish is to run away to alaska and live in an igloo away from society.

april

December 1, 2012 at 1:10 am
(41) Daphne Edwards says:

Tags on clothes; the edge of a bra strap; radio commercials: HEAT makes me ILL; cold gives cramps in legs- all bother me!
My breathing mask for C-PAP- hurts’!
If I twist my body the least BIT OUT of ALIGNMENT- I get a terrible pain in THAT muscle!

December 1, 2012 at 1:52 am
(42) Bec says:

This is so true, not helped by the fact that i’ve got very sensitive hearing as well, when i’m having a bad day i can’t face going anywhere with noise or too many people.
Funny you mention clothes tags – even before diagnosis i have always found clothing tags anoy the life out of me and they are usually the first thing to get chopped off!

December 1, 2012 at 7:53 am
(43) Justin says:

The years before I was diagnosed with ME I think I used to self -medicate with alcohol. I continued to try and do sport which left me with all the symptoms of PEM. By drinking alcohol the symptoms disappeared but only for the short time. Alcohol is great for calming the nervous system the problem lies in the hangover. For me this points to the role of Glutamine as an excitotoxin! Alcohol suppresses Glutamine but when you stop drinking the Glutamine rebounds causing the hangover. GABA is the bodies’ way of holding Glutamine in cheque. Can central sensitization be reduced by upping the levels of GABA?

December 1, 2012 at 12:57 pm
(44) foggy.agent99 says:

Yes on the lights! I carry larger dark sunglasses for covering around sides of face (driving), reading sunglasses and some smaller kinda Lennon sytle sunglasses not as dark for inside. It sounds like a lot, but they’re in lightweight sleeves I bought vs.heavy cases. The glasses and cases are not expensive (dollar store for almost all), and they are kept in an outside pocket of my purse so I can grab them anytime. I use them for when with doctors/hospitals (flourescent lighting), driving, shopping.. you name it. I am very sensitive. I also use felt green circles over the alram clocks, humidifier, phone, you name it in the bedroom. I use dimmers or lamps/switches for less lighting in the other rooms and with visits to museums, friends, resturants… if not in control of asking for a turn down (I do always) then I just wear sunglasses… it’s that simple.

December 1, 2012 at 1:13 pm
(45) foggy.agent99 says:

Yes, on lights, sounds and smells and busy viewing (I would never go to Las Vegas NOW).

I laugh on the clutter – since it is always with me these past few years.

With sounds, I ask to have the TV turned down, if it is too much – I leave the room and go as far into another part of where I am at and distract myself. If home, it’s very easy, because I can ask the folks to go to the basement rec room, or there is never a shortage of de-clutterings to do in another room. I love my windows in the car open, but noisy cars, screaming radios of others and esp. motorcycles and trucks, when driving or riding, I just temp up the windows.

Smells I am better on, but many take my breath away (not in a good way mind you), so I remove myself from the smells (stove, BBQ, toaster is my worse – it goes everywhere in the house when just a few crumbles burn – rrrghhh). Colognes can be hard since they can cling on your clothing and when someone hugs you, you just bear it until you can change out the clothes and wash it off.

Textiles, textures – I just keep wearing what is comfortable to me. Many folks kid me or make comments on my clothing – I have learned to not care if they think me a clown, what I wear makes my life so much better, they will never understand and I don’t make it my job to teach it. Besides.. it makes me unique. My husband understands and wants what’s best for me. He guides me for important gatherings of what’s a bit to far and other than that he loves me for who I am and what I endure, because I keep him happy, loved, laughing and seeing things in a different light (no pun).

I’m a very lucky gal to have great people in my life that love me for all my ordinary and non-ordinary ways.

December 1, 2012 at 2:16 pm
(46) Juliesue says:

Hi Adrienne, don’t ever leave – I know I speak for many when I say that I look forward to your weekly newsletter and always find it interesting and informative. Many thanks to you for all of your hard work on our behalf – I know I wouldn’t be able to do it! (sorry, off topic but I really wanted to say this)

December 1, 2012 at 4:19 pm
(47) skysgrannie says:

Never in my life would I have ever thought I would be in the place I am today! I’m nigh on 58 and my husband has become my caregiver. I am sensitive to smells, noise, light, clothing and a host of other things. Years ago I was intolerant of those that claimed to be in pain or oversensitve to every day things, thinking it was just an excuse to get out of doing something, now I have become that very person! It’s easy to judge others, we all do it, however, one must remember that life can change in the blink of an eye and you find yourself in the same condition of the one you stood in judgement of! Having read all the other comments about those with the same sensitvities as myself, I send my deepest sympathy and empathy to all of you. Don’t give up or give out and don’t let the nay sayers cause you to doubt! This is real! hugs to you all! :)

December 1, 2012 at 5:37 pm
(48) Meredith says:

This is applicable for RSD/CRPS too. Noise is the biggest for me. Makes it very difficult to go to restaurants on a better pain day, difficult to have dinner with my family (let alone ever going to a bar or concert). People don’t understand that ‘normal’ levels of noise can be PAINFUL.

There was one specific sound effect in the game Assassin’s Creed that drove me absolutely insane, and my boyfriend just refused to understand that it HURT.

December 1, 2012 at 8:18 pm
(49) B says:

I was “normal” before I had my second and last son csection. Noone told me that scince they pry u open like a grapefruit that they pull the muscles and when they close u up they do not return like a rubberband, hense I will be fat the rest of my life Dr. oz said the only way to get sumwhat thin again is to have a tummy tuck, but most dr.’s I have talked to say I am too sensitive, and I need 2 surgeries that r not tummy tucks.I have all the tuff u mentioned, especially the itching which I hope is not from cymbalta as it is the best antidepressant//pain killer they have made in a long time. Never could stand children screaming, and yet our starter house is located near a elementary school, had a daycare next door for 20 years, Basketballs drive me up the wall and there r 2 with in 2 houses of here.this was just asupose to be a starter house, but thwen I got this fm severe pain and cannot work. so I am screwed. dr. won’t fill out disability papers, I alsao hate saxaphones now that I had a neighbor boy who practiced happy bday to u… for 4 years and never got any better and would play it out doors like the culdesac was carnagy hall. always just after I got the baby down. don’t like firecrackers noise either.

December 1, 2012 at 8:28 pm
(50) Melody J Adams says:

Sometimes screaming kids bother me more then other times, when I am in a grocery store i want to go scream at a child are parent to shut them up lol, Lights not so much except at night when driving is really bad, perfumes and fragrances drive me nuts….I try to just zone out the noises but it is hard to avoid the smells and the lights.

December 1, 2012 at 8:35 pm
(51) B says:

to the negitive nellies or nor,s out there, just be glad u don’t get Migraines! Never had them until fibromyalgia and 2 small children. could not go inside Mcdonalds play area as I would always get one. So my husband would stay with my 2 sons and I would go take migraine med and sit in the warm car with my eyes closed till they were done. the biggest shock for me is I can not turn the smell sensor off. every day everything that gets cooked, I have to tuen on my aircleaner for like 20 min. till the smell goes away. My husband cooks spicy things I can no longer eat because of my GERDand foods I loved I can no longer eat
I can’t eat anything with normal salt on it as I swell up which makes my fingers crack and bleed. I need to use sea salt instead, but most prepackaged foods have reg. salt. I was 97lbs. when I met my husband., now am 250lbs. he says I never would have married a fat woman. He wanted kids, I gave him kids, and my body is ruined.when u have a car accident, and I have been in 3, passanger in 2 and rearended by 4 then 5 cars while waiting for the light to change, will cause problems down the road, like Osteoarthritis and a bunch of other things, guess this is one of those things.

December 1, 2012 at 8:58 pm
(52) B says:

suffered for years because of too much saxaphone noise. The add said quiet culdesac. it was anything but. When I thought I would miscarry from the stress of it I finally got the courage to go ask that boy “What makes u think the whole neighbohood wants to hear u play that thing”. well his parents weren’t too happy and we lost there friendship, but I saved my sanity and my sons pregnancy. And when the neighbor behind your house buys $1,000 of fireworks with m80′s or whatever u call the ones that r just noise. I had to turn on everytime the sax or fireworks went on the dishwasher, thew washer, the dryer, to dround out that horrible sound. Get an air cleaner, the louder the better, it drounds out the basketballs, screaming kids in rthe summer when u have to open the windows and hear the girls screaming for no reason and the parents not doing anything about it. drives me nuts! But that is the best thing I have found as earplugs don’t work for me. I had to have the tickking of the clock taken the batteries out of to get any sleep.Hope this helps someone.

December 1, 2012 at 9:24 pm
(53) B says:

as for going to resteraunts where people r talking, I go early like 4:30, I take my christmas gift certificate (it’ts just visa and go to Black Angus and u get the waitress all to yourself practically cause everyone waiting in line usually comes at 5:30 when we r done. That way I have less chance of losing my train of thought when the old ladies want to stop at the table across from me and scream to each other cause they never seem to have a hearing aid that works. hate having to scream at my mom so she can hear me as the t.v. is as high as it can get and she threw her hearing aid onto her table. I grew up with “Wheel of fortune” and other game shows bell on and the t.v. turned up so high so my dad could hear… I would gop outside to get away from it but them people have got these stupid windchimes …ahhhhhh!2 neighbors have them and they make the same 2 notes over and over when they r at work. why should I have to listen to them when they r at work or gone? my vegetable patch is like 30 ft. away and it never shuts up! people, please put them on your back porch or away. others should not have to get stuck hearing them and every dog. we have 3 dogs 2 houses away and they will bark untill their owners come back from work or what ever. one of the 2 people went to tiland for buisness, then the next time he went with her on vacation. having someone feed and water your dogs is not enough, if u r going to have them go outside via the doggie door, how about putting a muzzel on them or take them to dog obidence classes till they understand it is not o.k. for your dogs to be barking all the time. I know that sounds terrible, but I have 6 kids who live behind me. the noise is amplified, and why r they screaming in the first place they r on the same large deck. Now my husband is hard of hearing, so he wants me to yell to talk to him. So my son thinks we r fighting, had to explain that daddy couldn’t hear that well, but he wouldn’t admit it.

December 1, 2012 at 9:25 pm
(54) Cheryl says:

Wo.t. Eom Norm…yes, I just love having had to retire early and pay insurance more than my mortgage. I love love having to give up running and other workouts. I love being in poverty now. I love giving up shopping, which was a favorite activity. I love going from type A personality to a z. I love disappointing relatives friends. I love my life has done a 180. I love my life was ripped out from underneath me. I love I went from an independant go getter to a couch potato. I lovem going from being a driven, productive member of society to a blob. I think you need another doctor. Most of us don’t enjoy this. I would say you are an asshole, but I won’t. Be careful in judging..it comes back and will bite you in the butt.

December 1, 2012 at 10:04 pm
(55) Jacquie says:

Ponder: I have had this for years and years also…my first IBS attack was when I was 16…I Suffer with fibro and also Bipolar and I’ve come to develop agoraphobia also. I am 59 now.
Clothes have hurt me since I was a child and have never worn a bra until my sons started growing up….now it’s only worn for emergencies. So leaving the house is harder when in pain from your very clothes.
They say the Bipolar started probably when I was 19 and lost my two month old son to S.I.D.S. Light, sound, drafts and stress all send me out of my mind in pain at times.
I do not know how to get past this housebound thing but I am disabled and seeing a great head doctor now who prescribes me meds that have seemed to help somewhat.
I find as I get older it is harder and harder for me to manage this on my own as it did years ago when I’d wrote my book….but a few years makes a huge difference with these conditions…
Blessings to you…I hope you find peace in your ‘self imposed cage’ as I am trying to do…

December 2, 2012 at 9:46 am
(56) vee says:

I have had Fibro over 20 years, and it is very frustrating to buy new bras, then go home and put bandaids on parts of the straps that touch my skin. Smells nauseate me, esp perfumes, cigarette smoke, and certain food cooking, my sister calls me dognose,(because I smells irritate me so. She tells me I need to live in a bubble). Loose clothing is a must or I will have the worst stomach pain. Living life as I fibroliciously can!

December 2, 2012 at 5:25 pm
(57) MK Gilbert says:

I’ve been super-sensitive, like a canary in a cave, since infancy~have always needed more sleep than average and labeled/rejected for being overly emotional all my life. Severe fatigue for 25 yrs. I thot it was the mastectomy 7 1/2 yrs ago that made it impossible to wear a bra anymore~like other comment I can’t have elastic touching skin, wear polyester or wool. Bright lights, sounds (big and little), rough, dry skin, hair (even my own sometimes!), smells, many meds (even herbs~anything that’s a stimulant including caffiene and cold meds raise my pulse/BP), preservatives, artificial colors, sweetners and flavors can give me the runs within an hour, and I feel better avoiding dairy, soy, corn and yeast breads. I try to eat whole grain, fruits and veges, but when the depression is severe it’s hard to care…I know exercize is supposed to help, too, but can’t keep motivated, be consistent, and often am just to exhausted to care. Even going up a flight of stairs or a short bike ride has me huffing/puffing. Would like to lose at least 25 lbs (am more than 50 lbs over when I was young.) Living this way really bites.

December 2, 2012 at 6:13 pm
(58) linda says:

I had a severe sinus infection 4 months ago and the severe pain in my head, face, top of head continues. Hurts to wear a hat. Shower on my head for shampooing is quite a difficult chore. Acupuncture and chiropractor weekly treatments are a must or I would be housebound for sure. Bras? Socks? I go without on week-ends when I’m not at work. Now arthritis has come to join my FM. “Fibrolicious” is a wonderful word. And being a Super- Hero with Super Sensitivities also adds some needed humor. Thanks to you all.

December 2, 2012 at 6:50 pm
(59) Sonja says:

Well I am buying this, every bit of it as I have had both fibro and cfs for 1/2 my life (25+yrs) I didn’t have the hypersensitivity until the last 10 years or so, where noise especially started to bother me, but now it seems I am rattled by certain types of fabrics, sunlight really gets to me and I too break out with sun poisoning if I am in the sun more than 10 minutes.. smells, perfumes I can’t stand I have wondered if it is new perfumes I am not liking or are they just wearing way too much.. and going to big box stores.. the lights are so dang bright it makes my eyes do funny things, like putting halos around things.. and it gets worse and worse the older I get.. the Noise has to be the worst and no one wants to believe you, they want to call you an old fuddy duddy, but it is like someone stabbing my ears with an ice pick it HURTS and I get irritated and can’t get away from it

December 2, 2012 at 7:05 pm
(60) Sonja says:

@skeptic
you probably never heard of it because when it was first diagnosed it was called fibrositis not fibromyalgia,
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/

fibrositis was discovered in the 1700′s
fibromyalgia was coined (renamed) in the 1970′s
http://www.sharecare.com/question/when-was-fibromyalgia-discovered

it has also been called:
muscular rheumatism
I am sure you have heard of that

there is still A LOT of research going on with them

IT MOST Definately IS real!!

December 2, 2012 at 9:59 pm
(61) Anna says:

I agree with the people above who say that everyone does not have all the same symptoms…but a large percentage of us do have a lot of the sensitivities. I know people with fibro who do not have chronic fatigue or chemical sensitivities. I was diagnosed with fibromyalgia, chronic fatigue, Multiple Chemical Sensitivities and Porphyria. I personally am very sensitive to light and the sun. I get a rash from the sun. It’s called photosensitivity. I too could only wear cotton for years and no belts…..now I’m able to wear other fabrics and can tolerate a belt when it’s not too tight. I’ve had some instances where noise bothered me a lot but its not a continuing condition.
One day, in the early years of my illness, I went to a doctor and listed all of my symptoms. I was feeling embarrassed at the long list. To my amazement his answer was “I believe everything you have told me, that’s the nature of the syndrome”

December 2, 2012 at 10:52 pm
(62) Maria says:

First of all, this topic seems to have brought out alot more comments than usual. Alot of us must have this issue, and from my conversations with other people with CFIDS/FM, it’s true.
I am very sensitive to perfume, the smell of new cars and new furniture, paint, and some medications. I am very sensitive to noise, especially to the dogs behind my house which seem to bark for what seem like an interminable length of time. I can’t seem to regulate my body temperature, so I am hot all the time — a source of constant frustration between my husband and myself. HRT has helped.
How do I deal? First of all I do all my shopping by internet or catalog. My husband does the food shopping. I stay home alot. Restaurants are too noisy for me, so we eat at home mostly. We do things at off hours when crowds will be at their lowest. I wash clothes in health food detergents. Most of my doctors and services I need are in my neighborhood because I can’t stand the noise and dirt of the subway Driving is crazy here (NYC) and we don’t have a car.

December 3, 2012 at 11:46 am
(63) sPeeDeeBee says:

Wow, the number of women making comments here vastly overwhelms those by men, even with the very stilted ratio of F:M with ME/CFS and FM. I’ve had my own neuroses over time, but I’ve had my awareness of them raised and dealt with most. The kind of sensitivities we’re seeing here over and over are so different–so physical. My own sensitivity to noise and light, as well as some smells, has increased exponentially since I’ve had ME/CFS. It’s completely different.

December 4, 2012 at 2:34 am
(64) Dianne says:

I have always had a “good” sense of smell and hearing. When the kids were in elementary school, I could take them to Chuck E Cheese (a high-security pizza parlor / kids game room that is all about lights and sound) and let them play while I sat and worked on computer programming. I could tune out the noise and sound. 15-ish year later, I find Chuck E Cheese to be physically painful. I can no longer tune things out. “Background” noise grates on my nerves. Sometimes the sound is so loud (to ME!) that I cannot focus on what the words are. I am just overwhelmed by the various (sigh! Lost the word!) sights, smells, sounds, etc.
I cannot go down the cleaning aisles at the store, nor perfumes, candles, etc. I have to use expensive, special cleaning products (especially for laundry!) because of Multiple Chemical Sensitivities. My friend’s choice of laundry soap makes me want to stay away from her.
I am very lucky however, to be able to be touched. I’ve found deep tissue massage wonderfully helpful so I now associate that pain as relief. Unless it is sharp pain.
Now, I may associate it as positive, but my body still knows it is pain. The more I hurt physically, the less other stimulation I can handle.
I had FM first, and developed CFS later. When I am totally exhausted, my pain threshold to sound, light, etc is lowered.
People who wear too much cologne can simply give me a headache, or bring on an asthma attack. My attacks are always triggered by chemical irritants.
Tight, binding clothes are very painful. I view pressure as pain. It makes me irritable. (Unless it is in a massage situation, and I have learned to associate it with relief somehow)
Heat makes me sick; cold makes all my muscles tighten up so painfully I can hardly move.
And medicines that used to work either have quit working (not talking about getting used to them and needing more), or I have suddenly developed side effects I never had before.

December 4, 2012 at 11:18 am
(65) Dlee says:

I can’t stand wearing a bra. I struggle everyday trying to decide what to wear that is comfy but still looks nice. I wear a bra as little as often.

December 6, 2012 at 6:55 pm
(66) Carol A says:

I love the new word a husband called his wife “Fibrolicious”. I felt so good all evening saying that outloud. My husband does most of the cooking now.I am 73 & have had this FM/CFIDS for 15 yrs. I am still very fatigued. I hope to get in with a new Dr. soon, whom I am told is a good listener. I too deal with the clothing, bedding sensitivities. That is an easy adjustment. It is the noisy people & screaming kids that send me through the roof. Lately our apt. area has been real quiet. I am thankful we have good maintenance people to take care of plumbing or other building challenges.
If we owned a home it would be more responsibility that I am not up for.
I have not been in a mall in many years, as there always was lots of noise there I couldn’t tolerate. We try to go out to a restaurant early, either around 11 am or 400 pm, to avoid crowds. We don’t eat out much any more, though. Sometimes lately I’ve been thinking I do avoid going outside lately. This is my favorite season as it is cool. I always yearn for the cold weather as I can always bundle up. I am learning to appreciate each day as a gift. Sometimes I do get depressed I can’t do lots of things I used to & I can get irritable with my husband. I had a complete hip replacement, which helps me walk better. My macular degeneration has remained stable, but I am not driving anymore. I think the hardest thing to deal with besides the pain & fatigue is the islolation that I feel on a daily basis. My husband is still working so I get to see him every night, except when he has to go out of town for his job. I just want to encourage all of you to take one day at a time & keep trying, don’t give up. The good part is that if we are still alive we can keep on challenging ourselves…..Adrianne, thank you for this newsletter. I look forward to reading this every Friday.

December 7, 2012 at 6:18 pm
(67) Deb says:

I was surprised to see Bobbi mention the strobe light effect when driving and hearing things on the music.Haven’t seen these two mentioned before so I thought I was alone in these symptoms. Anyone else out there experience these sensitivities?

December 7, 2012 at 10:41 pm
(68) sue smith says:

CFS/Fibromyalgia are diseases that make you feel like you’ve skiied all day with the flue and no sleep. I got CFS in the 80′s and eventually found an understaning doctor and therapist. Family never understood. I started jobs where there was flexibility. I now live in a new area, and for four years have been dealing with the archaic medical system. I finally got disgusted about weight comments and exercise comments from doctors and no answers to my new developing illnesses. I discounted my problems to aging, menopause and cfs. Well, it got to the point of starting from scratch again, thinking it would be years again before I could function normally or steadily again. I was disjointed physically and mentally. I was becoming crippled and couldn’t walk and I couldn’t understand why because of knee issues.

Well, to make a long story short, I went to my fourth doctor in a month and said I need a doctor to understand my body better than I do. Also, my metabolism doesn’t work. I am being treated for hypothyroidism, which was ignored and now very severe and mimicks CFS. I have a severe vitamin d deficiency and had it three years ago and I didn’t know I would need to be on 5000 iu the rest of my life. Now, I have severe osteosporosis. I also had vit b12 neuropathy and my cardiologist didn’t believe me when I said I did and it was causing TIA’s(mini-strokes).Thank Gosh, my new primary doctor listened was someone who finally listened. The cardiologist believed me after I told him I was missing the MTHFR gene (b6, b12, folic acid deficiencies) or the manufacture of amino acids which basically rule the body and mind. I also have a pancreatic insufficiency (with vit d, e, k, a deficiencies). I had started vit e a few days prior so I knew about that one. Antibiotics deplete vit k and that was why I always thought I developed CFS in my 20′s when docs prescribed them like candy.

December 7, 2012 at 11:23 pm
(69) Judi says:

Hey guys,
This comment is to Norm and other nasayers. I’ve had a fibro diagnosis since 1986 and CFS since 1991. Most of the sensitivities, I have had at one time or the other. I do not believe anyone I know w/these symptoms are neurotic.
We do not want to be labeled with any negative terms.
Most docs don’t believe, but I’ve got docs that not only believe but try to help.
God bless us all.

December 8, 2012 at 8:53 am
(70) Meryl says:

I never thought, ever, that I would be sitting here in so much pain. I hurt everywhere – from toe-tip to scalp, even my hair hurts. Took ages to shower and dress – everything hurt so bad. We live on a main road – bad, bad choice!!! Non-stop noisy traffic, sirens, people, the noice is often unbearable. And then we switch the tv on!!!! too low and we can’t hear (because of the traffic), too loud and I go into a fit of pain and frustration.
From working a 60hour week to this!!!!! and people think I am shamming? I know what I would rather have…..an income 2nd to my husband which would mean holidays, spending money each month, some new clothes each season, a trip to the movies, dinner out – all sorts of things to spend money on – but instead I am almost housebound in pain and sensitisation which drives me insane but people think it’s all for show!!!!
These illnesses are not a joke, not for show. They are real and they hurt, 24/7

December 11, 2012 at 8:31 pm
(71) Denise says:

I have had Fibro since 9/93. I am 52 years old. I thought it would get better, but it has been getting worse. I too have the light sensitivity. The sun coming through trees while driving is horrible, like was mentioned. I have too many issues with my Fibro to mention (as I am sure you all do too) but something that happens to me that I don’t hear mentioned is this. My muscles vibrate. Yes,, vibrate. It happens all over, sometimes in my arm or leg or back. It moves around. If you have ever loaded a CD into a lap-top computer while the lap-top is on your lap it is that feeling. When I tell people this….well….you can imagine the reaction. Does anyone else have this crazy symptom?

December 15, 2012 at 12:33 pm
(72) Deb says:

Denise I also get the vibrating sensation. Vibrating is a good description. I refer to mine as feeling like electrical pulses. Also happens in various locations at various times.

December 15, 2012 at 9:38 pm
(73) Doreen says:

~~i’m sensitive to just about everything that’s already been mentioned plus i cannot eat anything that is even mildly hot or spicey…i don’t mean spicey like thyme, etc but any kind of hot pepper…my mouth & tongue just burn….even most toothpastes…

December 15, 2012 at 11:10 pm
(74) Donna says:

To Norm and skeptic; I have severe Fm/CFS. I worked my ass off for 22yrs as an RN saving ppl like you. As I lie here writing this the skin on my feet is throbbing from the weight of the sheets on my feet. I haven’t worked for a decade because of these diseases. I did not choose to cut my income to 1/4 cause I’m lazy or crazy. I am disabled and I look perfect. Still look fine with a nice red glow to my cheeks from the throbbing in my face muscles. I’m a bit over weight from the Fibro and exercise intolerance. U would never kno I was sick. I would suggest u both get educated before making such idiots of yourselves.

December 16, 2012 at 2:41 am
(75) Goth Weaver says:

CFS and Fibromyalgia have definitely heightened my sense of hearing and perception of color. light and volume have only become a little worse. Some of my biggest problems include reactions to sudden temperature change, being pushed, jarred, or bumped, and being expected to carry out heavy lifting for long periods of time. Also I have spinal problems and CFS doesn’t help that any either. Some days are worse than others and there is never any particular pattern. it would be nice to plan around my pain but just my luck, I can’t predict when it’s going to be worse. (funny how people think you can do this)

It really grinds my gears when people say “you don’t look sick”. In my head I like to reply with “you don’t look like an idiot”.

Fibromyalgia sucks!

December 25, 2012 at 12:04 am
(76) bzyma04 says:

I’m fairly new w/ my Fibro/Chronic Fatigue, just turned a yr of finally being diagnosed. I am so sensitive to soooo much it’s frustrating!

I also suffer from dry eyes and during a flare up (which is now several x’s a week) I cannot wear my contact lens during my flare ups because they do not sit right which is frustrating because I do not like wearing my glasses because of the pain or migrane I get later on.

My tongue also swells which interferes with my speech from constantly biting the side of it. (Soooo very weird, I know)

I also suffer from Ibs which is a pain in it’s self! The constant fatigue is so frustrating. I feel soooo guilty not being the mom I use to or want to be. I hurts physically and mentally.

My husband left me 5 months ago for a health instructor which was very hurtful because I cannot do or enjoy the things I use too. He told me that I was the laziest person he has ever known.
He obviously does not know me well enough!

It’s frustrating when people are blinded and refuse to learn about their loved ones illnesses.
My brain fog is getting worse as well. Sorry for the constant complain, I know with GOD by my side I can handle whatever is thrown my way. (eventually, lol)

GENTLE HUGS to all that suffer from Chronic illnesses and to thier loved ones who stand by them. ;)

December 31, 2012 at 2:51 am
(77) cedar says:

Yep I didn’t read all the comments but everything in your article rings true.I had all the sensitivities life long so they were there before I knew about an illness or the quirky things were connected to Fibro. Now after decades of struggle thru (now 55) all days are tough days. People think we have good days & bad days thinking a good day is like a normal persons good day…after my own search this isn’t close. Now after having a couple of years (a few yrs. ago) where if it was above 70′s I was burning up…I had a break with the regular temp. sensitivity..now it’s like a heater goes on & I’m way hot & desperately adjusting clothes, heat etc. than I cold to way chilly & I want the blankets covering me & they have to be a certain mix of cotton/ wool, or the soft new poly. I have baskets of shirts etc. & am changing many times a day. The need to be warmer or cooler, longer sleeve, light fabric, etc. socks, take off socks..it is like my part time job along with trying to find a comfortable way to lie down or sit. I bring various blankets in the car & open windows & close switch from heat/no heat, I study the weather so I can meticulously try to maintain the right temp. w/ least cost. I can tell 1 degree of difference on the thermostat & often struggle w/ 68 degrees or 69 degrees. I’ve always had trouble w/ flourescent light & noise…on &on the temp. thing has gotten way worse I’m terrified of having to be like in a hospital or somewhere what will i do. The pain is constant & lots of hours are just in bed. I can push past the pain enough times of the day to get the basics done. It’s tough to be in stores etc. for long

February 6, 2013 at 11:21 am
(78) Patricia says:

God Bless each and everyone of you (Norm also). Reading all your comments made me feel better. I have Fibro/CF. Now I do not feel like I am crazy. Thank you

February 24, 2013 at 12:37 pm
(79) CMY says:

I agree with this 100% ! I was having these symptoms for YEARS before I was diagnosed with fibromyalgia. Finally a reason for what others saw as “ludicrous” ! Everyone else was fine with the temperature, lights, noise, perfume, odours, you name it …. yet my sensitivities were getting progressively worse. My adult daughter has called me a “selfish b****” because “everything has to be my way” and “heaven forbid anyone make any noise”; she will not and does not have any understanding of my disease. Sad as it is to say, I have had to exclude her from my life because of her nasty, horrible , hurtful comments.
Our lives are hard enough without having family members, who should be there to support us, making it more difficult !!!

March 14, 2013 at 12:56 pm
(80) janet says:

i just read this thread. I so relate to all of this. I just thought it was me. That i can’t stand to wear a bra for to long. Or socks, shoes, jewlery, makeup, and the list goes on. I thought I was just being sensitive to crowds of noise rushing me all at once and making me feel anxious, heart pounding gotta get out of hear feeling. This is so frustrating. There is so much i want to do. But i just don’t have it in me to do the things that bring me joy. I can’t stand some smells, flashing lights, My darling husbands loud laugh can make me snap. I can’t tell him that but it’s hard to laugh at his jokes when the noise is overloading my senses. And the pain. You know the pain. I feel like I’m going crazy some days. My prayers go out for you all.

April 10, 2013 at 3:38 pm
(81) Hollie says:

Thank goodness for this article! I have had so many people tell me that i am being over sensitive or exaggerating but i will now be showing off my newly found knowledge with pride.

Bright lights bother me, if i happen to go to the bathroom in the middle of the night the light is painful and i am blind until i get back into the dark (bit like a mole really haha) and my sense of smell, i’m surprised i haven’t been hired to sniff things out for people yet, i can be physically feeling sick due to a smell that my mum and brother cannot smell! It is a nuisance if i’m honest, but at least i know i am not developing super human powers just yet and it is in fact part of the ME/CFS.

March 10, 2014 at 8:10 pm
(82) Kathy says:

I have been in pain for years with fibro. I have problems with lights, loud noises, smells. This drives you crazy when others say it is fine to them. We are sensitive to alot. I am hoping for some help or cure for fibro.and other chronic pain. The fibro fog is about as bad as the pain!!

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