Hi, is it just me that can’t tolerate the smell of perfume or aftershave ( any fragrance brand) at all? It makes me want to rip my skin off. I was never like this before lupus. ( diagnosed about 7 years ago but lived with it for about 15) I didn’t have this issue before lupus
I’ve had to tell my daughter ( who doesn’t live with me) to get changed and put her clothes outside on more than one occasion . And other people. And my manfriend.
So I don’t get many visitors
But I’m ok with scented candles or air fresheners. Is there maybe something in aftershaves and perfumes that sets me off?
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joanneM200
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Yes!! Like you, I have had this issue from the onset of my symptoms at around 25 years old. With my most severe reactions I start I will do a slow motion passing out. VOCs make me vasodilate.
I really wonder if it’s the immune system reacting funky. It will be interesting to hear the responses from others.
Yes I suffer the same with perfume and any other strong smells. I can’t bear candles, deodorant, hairspray or anything strong. I can’t go into Yankee candle shops either. I wear roll on deodorant and a nice body lotion. I thought it was just me🤷♀️
Hi KayHimm I have never gotten round to telling my consultant about this. There are always other symptoms which are worse and I just avoid strong smells as much as I can.
I'm fine with sensible use of expensive perfume - but I gag on cheap over-used stuff of all sorts and I cannot even walk past a candle/soap/"air freshener" shop, I have to cross the road! I don't have lupus, I have a different a/i disorder, but I think it is the a/i part. I can't cope with any cleaning products with artificial aroma either - especially lemon. In fact, some of the artificial aromas in lemon products have been associated with long term health risks - so maybe it is our bodies protecting us from further harm?
Yes, me too. I react to food smells (especially flour-based, gluten, dairy) plus chemicals of all sorts, laundry liquids even through the walls when neighbour is washing or tumbling, fragrance of all kinds, anything alcohol or petrochemical based. Don't even have to smell it, still can get that dizzy 'kicked in the head' feeling. Sometimes makes eyes water and makes me sneeze, diarrhea etc - depends on what it is. Direct contact makes skin split or peel. Datis Kharrazian in his huge tome on the brain says that the multiple chemical sensitivity can be loss of tolerance, often due to chemical exposure (either acute or over time due to poor ability to process) disregulating immune system, but the tearing, excess saliva, visual auras, bowel effects are an autonomic response and neurological in origin. Treatment for each is different, which is where I get stuck because I seem to have both kinds of responses and what you do to help the neuro ones would make the immune ones worse, if I understand correctly. Many things you can do though, including vit D, glutathione, reducing chemical exposure where possible and improving ability to process what you can't avoid by supporting liver. Whole chapter on toxins and the brain. Good book and worth reading. I first noticed odd chemical reactions (to anti-bac hand sanitiser as it happens) a few years before signs of first AI, but thinking back it used to happen in my teens too, and first AI was present earlier than I'd realised, just wasn't diagnosed. Cheers.
I start to get a headache, cough, runny nose and yukky stuff (sorry!) runs down the back of my throat. I also think the solvents are to blame as any air freshener, paint has the same effect.
Mind you, so does the smell of bleach and other cleaning products. Has a knock-on effect for my poor hubby 🙄🙄🙄
Oh poor you!! I love perfume but only certain brands. Others make me wheeze or give me a headache. Strangely scented candles and air fresheners make me wheeze like an old goat. Xx
Oh yes, and air pollution in cities does the same to me! And some wash detergents....when the previous neighbour had the washer on, I had to stay indoors! 😅...also when crops are being sprayed with organophosphates....presume it's the immune system picking up on airborne toxins? xxx
my smell and taste vary from each item on a daily basis. sometimes I smell things wrong too. one thing I can't tolerate at all is sweeteners, I get nauseous and headachy.
Me too 🤗 I dislocated my knee in 2017 n at the fracture clinic appt afterward the doc came in wearing really strong aftershave..I thought I was gonna vomit..I felt really dizzy and nauseous..with sudden headache!! We painted the wall in the lounge behind my chair..that evening I was violently sick!!
Chemicals in anything really set me off..I use only natural products as much as poss.
Thanks for posting this joanne 🤗 I'm glad to know I'm not alone in my weirdness!! 😹🌈😽😽Xx
Thinking about it Kay I didn't have any problems before with my sense of smell. Another thing I'll mention is that just prior to lupus diagnosis my sense of taste was weird...everything tasted of salt!! 🌈😽😽Xx
So glad you posted this, Joanne! I am going to take this issue to my neurologist whose hospital has established an autoimmune brain center. They treat a lot of lupus and other autoimmune diseases. He has an interesting way of describing our (my) brain. I wonder if all of this is neuro immunological - sort of like gulf war syndrome or migraine-like reactions.
I have had allergy testing - no IGG allergy to these things that make my brain go nuts.
Maybe « sudden reaction to perfume » will become part of the lupus classification. 😂
How interesting. Could you share the name of your hospital and the neurologist? I wonder if she/he may have written some papers on this subject. Many thanks!
Derek Chong. His specialty is epilepsy, which may be a common specialty le among neurologists who become interested in lupus and then other autoimmune diseases since seizures are not uncommon in lupus. Souhel Najjar is the chair and may have written more descriptively about the experiences of lupus patients and reactivity to chemicals and scents. He wrote the book Brain on Fire.
t's so interesting to read this. I have always had problems with many perfumes too, avoiding shops with perfume counters or, as a child and having no choice, holding my breath as I walked past them. It's usually perfumes people wear rather than soaps and candles etc. that make me feel particularly nauseous, although I'm never comfortable with strong smells.
That reminds me of one of my early reactions - vomiting and ill for several days after a night closed in a (large) room with lots of cut flowers (sleeping on sofa after sister had an operation). Oh boy I felt bad. I do find some plants I used to like affect me, but mostly in the garden I still get pleasure from the ones I always have. It seems to be things that are higher in terpenes that affect me, like rosemary and thyme (and cannabis), which might explain why some find lemon scented products a problem.
.. interestingly though, when looking back, just how many of us experience pieces of the jigsaw, slot into place when our reaction to strong smells or chemicals are tested.
Seems we are all very similar, & yet still, very different. 🤔
Me too to strong after shave/perfume air freshners wax melts they give me the most awful pressure like headaches and i feel so physically sick it does not stop till I get away from the smells then it takes time to go back to normal I have had SLE now for the last 35 yrs
Did you have this reaction before diagnosis? It is interesting how many of us have this symptom. Have you been told you have migraines? I felt so weird about having these reactions that I didn’t mention it until a neurologist told me to just « tell him all my weird things. » He immediately responded that this was not at all weird and was part of my migraines. They have been studying migraines in lupus patients for a long time. Wouldn’t it be interesting to know if our migraines are more complicated and varied?
No did not have this problem to smell prior to lupus and as for my migraines I have been under nuero specialist as this migraines are part of my.lupus they got so bad I could not function nothing worked. So now take a daily tablet and touch wood it has been excellent for years
Very interesting. So you are like a lot of us in that the migraines started with your autoimmune disease and the reactions to scents bring on neuro symptoms.
Hope the migraine prevention helps. I do think certain things are better. But staying away from certain cleaning products, perfumes and fresheners is essential.
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Hello all - Just a wee update
Just diagnosed Lupus today 
Can anyone settle this for me? 
Just want some opinions
Just diagnosed and super scared
