I can not stand to smell perfumes or colonge It makes my throat raw and instantly makes me wheeze short of breath. Going to the mall walking through the area where it is sold and sitting beside someone in church who has it on messes me up real bad after being around it it takes me weeks to get it out of my system. I was even put into the hospital with fluid on my lung and not one but two different nurses wore perfume during their shift. Once they came in my room it's like the smell from the perfume/colonge was still there long after they left. Does anyone else have this problem? Is there a certain type of Sarcoidosis that causes these problems? I don't expect people to stop wearing it for me? Because we all love to smell GOOD this actually use to be a fun thing for me and the girls hitting the malls we called perfumes a thing of beauty something like smelling roses? HELP because I don't wont to have to start staying at home all the time because what once smelt so nice to spray today take my breath away.......2blessed2stress, but whats a girl to do?
IFGODBEFORYOU619
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I can't stand to smell perfumes or colonges?
- By IFGODBEFORYOU619
- Posted October 7, 2007 at 8:59 pm · 27 replies
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- By Deb6
- Posted October 8, 2007 at 9:30 am
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Hi there..IFGODBEFORYOU...
I totally agree with you about the perfume as along with Sarc I have MCS (multiple chemical sensitivities)...which I'm sure is a part of the whole Sarc deal. Since I'm now on a research treatment for my Sarc, I have noticed my MCS improving...but it is a shame that so many people do not understand what it is like to be sensitive to chemical smells. We are certainly in the minority, otherwise all of these perfume counters would be closed!! Especially in a hospital, wow, that should definitely be a big no-no!
I do believe you have a right to "kindly" let someone know about your sensitivities-- you have a right not to feel worse than you do!
GL, Deb
- By stacismom
- Posted October 8, 2007 at 9:19 pm
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I cant answer all your questions, but I too have a problem with too much perfume or even room freshners. My husband loves fabreeze, ugh. I am too new to Sarc. to know if it is certain types, but All I know is that strong fragrances just put me in a tail spin. I get short of breath and I can taste it like I ate it. Lasts about a few hours though. So good luck and God speed
- By BUNKIE
- Posted October 10, 2007 at 4:34 pm
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Hi
I can totally relate. I don't think it is the Sarc. My message therapist told me that it is my immune system problem. Her sister has Fibromyalgia and has the same issue. I have a sign on my door that says my house is scent free. It started for me after I was diagnosed and went on mega doses of Prednisone but that may not be what caused it. Not only is it all colognes but hair spray, nail polish, cleaning products, smoke, scented candles, tar, cut grass, Fabreze for sure, bug spray, Downy and on and on. I have changed all my cleaning products to unscented and non toxic and I kep a mask close most of the time when out in public. It looks stupid but I get dizzy and then start with a migraine after exposure.
This disease is really hard at times but living non toxic does seem to help some.
Bunkie
- By marykay
- Posted October 10, 2007 at 8:50 pm
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I have asthma as well as sarcoid and am sensitive to all the products and scents that everyone has mentioned. Several of the ladies at my church have the same problem and were having to move around in church to get away from the lovely smelling ones. We finally asked the church deacons (very politely) if perfume and cologne could be banned from the church. They all voted yes and asked the congregation to refrain. Everyone has been great. We can be comfortable and healthy at church now.
I would absolutely mention it to someone at the hospital about nurses or any personnel wearing strong perfume. It's not fair to the patients! We have enough to deal with already.
- By petcin3
- Posted October 11, 2007 at 10:14 am
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I also have this symptom but the strong odors make me sick, I have noticed I have a very sense to smell anything which I never did before, most things I smell others do not and then they wonder why I am getting sick enough to throw up. A friend told me be thankful you have like a bionic nose you can smell the roses without the up close smelling, well I would rather not have this extra sense for smells! I just want to feel good and smell things normally! but I know tha will not happen.
Yes it is you right to say to nurse not to wear perfume in fact they should post something on your door, you are there to get better not to feel worse
Cindy
- By Sscuff
- Posted October 29, 2007 at 7:19 pm
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Hi
I am Asthmatic as well as being a Lung Sarc Sufferer, and some smells do set me off. Not all perfumes mainly what I would smell as sweet and sickly ( and not a good choice for the wearer)
cleaning products are a no no, particularly oven cleaners, which means I have to use far more elbow greese than neccessary and plug in air freshners really bother me, as well as petrol or desiel smells. I have found though that some smells don't affect me and I keep those closest to me in an effort to either dull other smells or as a boulster against my allergy. I love natural flowers and think nothing of sticking my nose in a fresh bloomed rose or wild honeysuckle. Lavender also is good. I do use quite low scented bathroom utilities, like shampoo and soap with just a hint of vanilla. I often burn josticks instead of having air freshners a lot of these scents are quite innoffensive, and I do wear one type of fragrance that doesn't make me feel smothered. I think introducing smells that are okay has helped somewhat, not totally, build up my resistance to smells that really choke me up. Also I don't know if it comes with our condition but I have a really keen nose for bad smells too. If there is something going array in the fridge I'll notice it way before anyone else does! Maybe it isn't out fault maybe it is just some people's choice of perfume is really awful!
All the best
S
- By bailey52
- Posted November 1, 2007 at 10:43 pm
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Yes are immune systems are over reacting so our body cannot tolerate airborne or skin seeking chemicals. The best thing is detox house, get rid of candles and potporri. Don't use perfumes or spray. Find a fruit or rasberry spray that is natural. Use non-scented detergents, soap, and dryer sheets. It will make a difference. Eat fresh foods, natural, organic, avoid processed foods and fast foods. Use mineral supplements too. Eat six small meals a day and healthy snacks. Lots of water, water, water. You can flavor with fresh lemon or a little real juice. At 911, some have gotten sarcoid from the airborne chemicals and dust. The military has deal with that.
I had to let people know and avoid places that make me worse. My body is better but I am careful. At church I have to set at the back and then get outside to visit. I go outside more for fresh air and work in the yard but don't overdo.
Praying for you and bless you.
- By rick2
- Posted December 12, 2007 at 1:21 pm
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I used to hate the smell of cologne and perfumes. Now, I cannot smell hardley anything!
I can only smell things that are horrible with the exception of cigarette smoke...I can smell it a mile away. From one extreme to another.
- By mrsnj91
- Posted February 13, 2008 at 9:19 am
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I am so glad you wrote this. I thought I was nuts! I have been having chemical issues for a while now myself. It started with perfumes. I used to wear it all the time. Now I can't be in the same room. I can handle body sprays that are light scented though. I spray and then leave the room so I am not sitting in the middle of the original spray! LOL! I can handle fruit or vanilla scented candles. But anything sweet, strong or floral...OMG...NO! I get headaches and feel like I am going to be sick. I even think I had an asthma attack once. I notice bleaches now set me off. When I buy cleaning products I try and get orange scented things as that doesn't bother me so much. And I do NOT use fabric softners! I can no longer tolerate smoking of any kind. Even 2nd hand.
I went in a store that was getting ready to close and they had just bleached their floors and I thought I was going to pass out. That was the turning point for me. I tried researching online but there really isn't anything concrete. Most things says it is in your head. *sigh* SO I just suffer and say nothing. But now I am wondering if I should bring this up to the dr.
- By Chevypanel52
- Posted April 2, 2008 at 9:57 am
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It seems that a LOT of these UN-natural fragrances are triggers or at the very least, aggravate those of us with Sardoidosis in the lungs. Second-hand cigarette smoke is by far the worst for me, my lungs instantly congest and I cannot breathe. I keep my puffers handy at all times when I out for a walk or wherever I may encounter smokers. Perfume is # 2. Household cleaning products are really bad as well, so I've switched to Home Hardware's Natura brand: doesn't bother me and they clean great. Also switched to fragrance-free laundry products. Those scented dryer sheets that everyone insists on using are another thing that should be out-right banned. Whatever chemicals they use to make "Mountain Breeze" or "Linen Fresh" cause me severe breathing difficulty.
- By aforker
- Posted April 2, 2008 at 1:53 pm
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I am so glad I saw this post. I thought I was going crazy. Seems as though I have an increased sensitivity to smells from things like perfumes, fragrant candles, cleaning products, SMOKING. I just have a really low tolerance and need to walk away quickly from the point of contact. I will often feel nauseated by such scents/smells. Fresh flowers or anything natural doesn't bother me. It's more of those "manufactured" scents. Car air fresheners are horrible - instant headache w/ those. Last week someone was cleaning their desk with some sort of Clorox wipes (lemon scented), I had to leave the office, take a walk and open up some windows because it made me so ill.
- By aforker
- Posted April 2, 2008 at 1:55 pm
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One more thing I forgot to add. When I asked my pulmonary doc about this, he said there was NO CONNECTION. I completely disagree ;) There has to be! Never experienced this before until sarcoid came into my life.
- By jbrock
- Posted April 2, 2008 at 2:25 pm
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I'm right there with you girl! I can smell it when i'm waiting for a light to change! I can smell it when someone is out side smoking and put it out just before i pass. I can smell it anywhere! I hate ciggi smoke! Although i find that if i think about it too much i start panicking and it makes the smell worse for me. I try to just relax and say to myself it will pass. It always does. Take care
- By jbrock
- Posted April 2, 2008 at 2:26 pm
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I'm right there with you girl! I can smell it when i'm waiting for a light to change! I can smell it when someone is out side smoking and put it out just before i pass. I can smell it anywhere! I hate ciggi smoke! Although i find that if i think about it too much i start panicking and it makes the smell worse for me. I try to just relax and say to myself it will pass. It always does. Take care
- By aforker
- Posted April 2, 2008 at 2:36 pm
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LOL. I can be sitting at a light and then I will tell my husband someone is smoking. It could be 4 cars ahead of us but it still gets to me. Or, if a neighbor is outside having a smoke on their deck, I'll run to the back and close our door so the smell doesn't permeate the house. Luckily, we live in a state that has banned smoking in restaurants. It's wonderful.
I was at the mall this weekend and before I walked into Macy's I had to take a deep breath and walk quickly through the cosmetics/perfume area. It's kind of a little game I got going now. Take a deep breath, walk through quickly, avoid the shoppers oggling shoes to the right, perfume salespeople to the left .... all without turning blue or passing out before you get passed it all ;)
- By Sarig3
- Posted April 2, 2008 at 3:39 pm
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I also have an acute sense of smell and am really bothered by perfumes and colognes-going to church seems to be a time when people bathe in the stuff! I believe my sensitivity is a warning from my body to Get Fresh Air!! All these chemicals are hard on our lungs(and the rest of our bodies) and it doesn't matter if it is a perfume, cologne, air freshener, cleaner, etc they should be avoided because it makes it more difficult to breathe. This is my own opinion!! Life is better when I avoid the powerful smells. And it seems from these posts that others have the same problem so it isn't just a "me" thing, there is comfort in that-in a sad way.
To clean breathing! Sarah
- By mrsnj91
- Posted April 3, 2008 at 8:53 am
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"I was at the mall this weekend and before I walked into Macy's I had to take a deep breath and walk quickly through the cosmetics/perfume area. It's kind of a little game I got going now. Take a deep breath, walk through quickly, avoid the shoppers oggling shoes to the right, perfume salespeople to the left .... all without turning blue or passing out before you get passed it all ;)"
That made me so laugh! I DO THE SAME THING! My husband thinks I am nuts but I just cannot do it. I breath, hold breath and go for it! LOL!
- By careblair
- Posted May 9, 2008 at 1:17 pm
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I have the same problem. Perfume, cigarette and cigar smoke, and chemical fumes completely mess me up. I literally have to hold my breath or leave the area completely if I smell any onf these things. Which makes it extremely hard because they are everywhere.
- By Nikkis
- Posted May 10, 2008 at 6:50 pm
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People will look at me like I crazy when my husband and I go to Wal-marts. When it is time to go and get more laundry soap or dish soap I have to cover my face and I can't hold my breath that long. Usually what I cover my face with is the top that I have on. I will pull the front of the neck line up over my mouth and nose like the way that bandits did in the old west movies. LOL I also find it hard when I end up going down either the baking isle, or the forbit candy isle. Love the candy, hate the smell.
- By GreenMan
- Posted May 11, 2008 at 12:52 am
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Ah, another topic to chime in on! I smoked for 20+ years, and quit about 3 years ago. My sense of smell slowly returned, and all was well. However, over the last couple of months, someone's turned the 'sensitive' setting WAY up on my nose. I too am becoming adept at holding my breath through certain parts of the store. Any fertilizer or weed killing products make me physically ill. Guess it's good I started gardening organically last year! Of course, karma's working full force, and cigarette smoke is the absolute worst. Now I understand why people got grumpy and moved away when I lit up!
Just another thing to adjust to; avoiding smells makes me nimble in the store. I do think I'll hide my son's cologne, though.
Hope everyone has a scent-free day!
Jeff
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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