Multiple Chemical Sensitivity/ Fragrance Intolerance

I am also very sensitive to smells - but again, not to the extreme that you seem to be.

In my case, I think some of the physical issues I get stem from my own reaction. For example, I will try to limit breathing in the smells, only using very shallow breaths, and sometimes holding my breath altogether until I can get into fresher air. This obviously has the effect of making me lightheaded and close to fainting. But I do believe it is caused by my reaction, and not directly from the smell.

I do also get longer term issues such as headaches and vision issues if I am trapped in a smell for hours. For example, bathroom sealant or some types of paint/varnish. (Luckily I have found one type of wall paint that I can tolerate). And also the plastic smell from new appliances etc.

Unfortunately, I live in a small flat, and the smells from the neighbouring flat have an impact on my daily life almost every day now. I have tried to block up as many gaps in the walls as I can find. But that has not helped much. Other people just say I should add more smell (albeit a pleasant one) but they do not seem to understand that even a pleasant smell is intolerable when it is strong, and worse at some times of day than others as well.

Yes. I even used waterproof sealant which made me ill for several days afterwards, because I hoped that would solve the problem long term. But it's still coming through floors and/or walls sadly.

Funny you mention masks, as I can't use those at all myself now. I did keep trying to use one for shopping when the covid mask rules came in, but the smell of the mask and even my own breath used to stop me breathing, and caused even more dizziness etc.

I haven't used a mask, or a visited any public place, for around 4 years now. Lost the ability to drive back then due mainly to increasing vertigo/dizziness and ever-weakening digestive system, and can't see any way back to that now. I do also have agoraphobia, but not the type that people think of immediately. Mine is about being trapped in any place or any situation, so I experience it inside my own home as much as I did when I could still travel locally.

I have also had MCS (Multiple Chemical Sensitivity) for the last six years.
This illness has completely turned my life upside down.
I was forced to give up all social life and almost all human contact.
I have no friends and no family.
All the people I used to communicate with never accepted me or understood who I am or what is happening to me.
For example, when I first became ill, I was living with my sister.
I had to throw away my belongings because I could not use items that had been exposed to perfumes, essential oils, or laundry detergents. I simply cannot tolerate these things. I had to throw items away and buy new ones again and again, even basic things.
My sister bullied me because of this. She called me a psychopath, crazy, schizophrenic. There were constant insults and complete devaluation of my illness and my condition. It even escalated almost to physical fights — “Why are you throwing things away?” — even though those were my personal belongings. They did not concern anyone else, and it was my own decision. I have the right to throw away anything I want.
I also had to sell my car. When I first got sick, I could no longer tolerate the smell of my own car. I couldn’t drive it anymore. I became dizzy while driving and was repeatedly close to having serious accidents because I experienced complete disorientation. The world around me would start spinning, the ground felt like it was disappearing under my feet, and I could not feel space at all — I couldn’t understand where the car was going or what was happening.
This feeling — like the ground disappears under my feet — happens with many triggers. Because of this, I sold my car.
As a result, I reduced all my contacts to online communication only, with people who do not interrogate me, do not dig into my life, and mostly do not know about my illness. These are usually work-related contacts.
I cannot build relationships. I live alone.
The last time I tried, I had a fiancé from the USA. We planned to get married. As soon as we started living together, he completely rejected the reality of my illness — despite the fact that he himself had severe asthma. Still, my condition was something he could not accept at all. This illness deeply affects everyday life. It is not a “simple” disease — it requires a complete change of daily living.
I ended that relationship. After that, I realized that I can no longer build relationships with anyone. I cannot constantly prove that I am truly ill and that my life has serious limitations.
Relationships are responsibility. You cannot simply “throw them away” the way you can throw away a T-shirt that has been contaminated by a trigger. Because of this, I have to live alone.
This is extremely difficult, because I still have to earn money, work through these conditions, and take care of myself. But even self-care is a serious problem for me.
My strongest trigger is essential oils — they are the worst.
My reaction to essential oils is suffocation and intense burning throughout my body, as if I were scalded with boiling water. This can last for hours or even days.
There is burning of all mucous membranes — throat, nasopharynx, esophagus, stomach. Panic attacks, dizziness, nausea, vomiting. Internal organs start to hurt — pancreas, kidneys.
Other triggers include tobacco smoke, laundry detergents, perfumes, cosmetics (almost all types, with very rare exceptions), cleaning products — especially chemical ones with chlorine, swimming pools, soap, shampoos, detergents, new furniture, cars, new clothes, even new household appliances — especially kitchen items, shoes (I can even react to the smell of shoes), air fresheners. Car air fresheners are among the worst triggers.
Very often I do not even perceive a “smell” itself. I don’t need to smell it — everything penetrates through my skin. Masks do not help me.

The hardest thing for me is going to stores or crowded places.
Even if there are only a few people, it is already a serious trauma for me. Every single trip to a store is always a traumatic experience.
I cannot touch products or shopping bags with my bare hands. I either use gloves or an extra protective layer, such as clean plastic bags. People often laugh at me in stores or public places when they see how I handle things. Naturally, they ask questions about why I behave this way.
Very rarely, empathetic people react with understanding and even try to help me — for example, by packing my groceries for me. When I tell them that I have MCS, they treat me with respect. But most people have no idea what MCS is. For many of them, it becomes a reason for trolling and bullying.
This is extremely painful, and after all these years I still have not learned how not to react emotionally to it.
I also have serious appetite problems caused by the same condition. I eat at most once a day, but very often I cannot eat even once a day. Sometimes I eat once every three days, sometimes once every five days, and there are periods when I eat nothing at all for a week.
I have a very strong metallic taste in my mouth, which makes it extremely difficult even to drink water, let alone eat. Because of all this, I live a very isolated life — but paradoxically, even at home I do not feel safe.
Inside my apartment, I have to constantly control every action and every step. For example, I cannot safely sit on the couch, relax, turn on the TV, and just watch something casually. I simply cannot do that. I never have remission. I am in a constant state of flare-up every day. It can be somewhat tolerable, passively painful, or completely unbearable.
I have serious sleep problems because of this. During crises, I also suffer from nightmares — extremely frightening, disturbing nightmares that follow me emotionally for several days afterward. I started sleepwalking, waking up in another room, checking who might have been there. I hear sounds, footsteps, and feel like someone is moving around. My central nervous system is clearly under constant, severe stress.
I suffer from deep depression. I have no goals in life anymore, no plans for the future. I stopped smiling. I stopped enjoying small things. I used to be a very strong, motivated, and determined person, but now I feel completely broken.
I have never met anyone with the same condition in real life — only through social networks.
As mentioned earlier, I also have to use protective layers. I cannot sit in public places without placing a barrier, such as a plastic bag, under me. I never know who sat there before, and if I do not use protection, it always ends with serious consequences for me. I cannot open doors in public places with bare hands either. In general, it is unsafe for me to touch surfaces or even clothing in public spaces.
I have no real medication for this condition. The only thing I have is antihistamines. I sometimes use Byron*, but I have uremia, and this causes serious complications for my kidneys. However, it completely eliminates all my symptoms. For about 12 hours, sometimes slightly longer, I feel like a completely healthy person.
Unfortunately, my kidneys suffer greatly, and uremic crises are much more dangerous for me than MCS itself. Because of this, I use antihistamines only in very rare cases.
There may be people here with MCS who have tried this. I know a woman from the United States with MCS who told me she also takes antihistamines and that they help her significantly. She experiences side effects, but she does not have kidney problems.
By the way, my uremia started at the same time as MCS, which makes the situation even more complex and layered. It is extremely difficult to untangle what exactly caused the illness.

In my case, the situation is extremely layered and complex.
Initially, I had a chronic viral illness that very quickly began to provoke severe allergic reactions on its own. About a year and a half later, on the advice of a doctor, I started taking supplements — Chinese supplements — specifically to address the viral condition and the allergies.
That was exactly what became the trigger for both MCS and uremia.
It did not develop gradually. It was not something that slowly escalated over time. It happened in a single day. After taking those supplements, I experienced a very severe and frightening crisis. That moment became the trigger point for this serious illness.
In addition to MCS, I developed uremia. My kidneys are almost unable to eliminate toxins and histamine from my body. This is a very serious part of the problem.
I cannot heal my kidneys or undergo transplantation. Kidney transplantation is impossible in my case. First of all, with MCS it would be useless, because everything would eventually return to the same state as before. The immune system response is already broken.
This is also the reason why I cannot take antihistamines regularly. With uremia, my kidneys are unable to process and eliminate histamine properly. In this situation, antihistamines place an enormous strain on my kidneys and cause kidney crises, which are far more dangerous than allergic attacks themselves.
Many doctors claim that MCS is a pseudo-allergy or not a true allergy at all. But then a very simple question arises: why do antihistamines help people with MCS?
It is almost absurd how much modern medicine remains stuck in the past century when it comes to this condition. MCS is still poorly studied, and many doctors simply refuse to believe that such types of reactions exist at all.
Over these six years, I have very often been in states where I had frequent suicidal thoughts. This was not because I wanted to die, but because of hopelessness — because of the impossibility of enduring the constant pain, exhaustion, and limitations.
I spend most of my time locked inside my home. Occasionally, I try to rent an apartment near the sea, far away from people. Being surrounded by nature and silence helps me recover, at least temporarily.
Swimming in the sea makes me feel almost like the person I was before the illness, six years ago. Another place where I experience significant improvement is the Dead Sea. There, my body undergoes a powerful detoxification, histamine levels decrease, and my central nervous system stabilizes.
Even my appetite returns after visiting the Dead Sea — sometimes intensely. But this effect is always temporary. The improvement lasts no more than two to three weeks.
I have no formula for maintaining stability. I have no long-term solution.
I feel much better in summer. Warm, sunny weather makes my condition significantly easier to tolerate than winter. Fewer layers of clothing, easier movement, and a warm climate help my lymphatic system and overall functioning. Summer is much easier for me to survive.
I do not have pollen allergies. I am not allergic to flowers. And so far, I do not have asthma.

have been living with Multiple Chemical Sensitivity (MCS) for the past six years. This illness completely turned my life upside down.
I had to give up almost all social contact. I have no close friends and no family relationships anymore. The people I lived with or communicated with were unable to accept or understand my condition. When I first became ill, I lived with my sister, and I was forced to throw away personal belongings because they were contaminated with perfume, essential oils, detergents, or chemical residues. I physically could not use those items anymore.
My sister bullied me for this. She called me crazy, schizophrenic, and mentally ill. There was constant invalidation, humiliation, and even near-physical conflicts over the fact that I was throwing away my own belongings. No one respected my boundaries or understood that this was about survival, not choice.
I also had to sell my car. When the illness began, I became unable to tolerate the smell of the car interior. Driving caused severe disorientation, dizziness, loss of spatial perception, and near-accidents. The world would literally float, the ground would disappear beneath me, and I had no sense of direction or control. This happens with many triggers — it feels as if the ground disappears under my feet.
Eventually, I reduced all contacts to online-only communication with people who do not interfere in my personal space and who are unaware of my illness. I cannot build relationships. I live alone.
The last time I tried to build a serious relationship, I was engaged to a man from the United States. When we started living together, he completely rejected my condition, even though he himself had severe asthma. My illness deeply affected daily life, and that was unacceptable to him. I ended the relationship. After that, I realized I could no longer prove to anyone that I am genuinely ill or justify my limitations. Relationships are responsibility. You cannot simply “throw them away” the way you can throw away contaminated clothes. That is why I live alone, despite how difficult it is.

Essential oils are my strongest trigger. Exposure causes suffocation, full-body burning sensations as if I were scalded with boiling water, intense burning in all mucous membranes — throat, nasal passages, esophagus, stomach. These reactions can last for hours or days.
Other triggers include tobacco smoke, detergents, perfumes, cosmetics, cleaning agents (especially chlorine), swimming pools, soaps, shampoos, powders, new furniture, cars, new clothes, electronics, kitchen utensils, shoes, air fresheners — especially car air fresheners.
Often I do not need to smell anything. The reaction occurs through skin absorption. Masks do not protect me.
The hardest thing for me is going to stores or crowded places. Even a few people nearby can be traumatic. I cannot touch products or packaging with bare hands. I use gloves or clean plastic bags as barriers. People often laugh at me, ask questions, or mock my behavior.

I have been living with Multiple Chemical Sensitivity (MCS) for the past six years, from 2020 at covid time. This illness completely turned my life upside down.I had to give up almost all social contact. I have no close friends and no family relationships anymore. The people I lived with or communicated with were unable to accept or understand my condition. When I first became ill, I lived with my sister, and I was forced to throw away personal belongings because they were contaminated with perfume, essential oils, detergents, or chemical residues. I physically could not use those items anymore.My sister bullied me for this. She called me crazy, schizophrenic, and mentally ill. There was constant invalidation, humiliation, and even near-physical conflicts over the fact that I was throwing away my own belongings. No one respected my boundaries or understood that this was about survival, not choice.I also had to sell my car. When the illness began, I became unable to tolerate the smell of the car interior. Driving caused severe disorientation, dizziness, loss of spatial perception, and near-accidents. The world would literally float, the ground would disappear beneath me, and I had no sense of direction or control. This happens with many triggers — it feels as if the ground disappears under my feet.Eventually, I reduced all contacts to online-only communication with people who do not interfere in my personal space and who are unaware of my illness. I cannot build relationships. I live alone.The last time I tried to build a serious relationship, I was engaged to a man from the United States. When we started living together, he completely rejected my condition, even though he himself had severe asthma. My illness deeply affected daily life, and that was unacceptable to him. I ended the relationship. After that, I realized I could no longer prove to anyone that I am genuinely ill or justify my limitations. Relationships are responsibility. You cannot simply “throw them away” the way you can throw away contaminated clothes. That is why I live alone, despite how difficult it is.At the same time, I must somehow work and support myself, even while being constantly ill. Self-care is extremely difficult. Essential oils are my strongest trigger. Exposure causes suffocation, full-body burning sensations as if I were scalded with boiling water, intense burning in all mucous membranes — throat, nasal passages, esophagus, stomach. These reactions can last for hours or days.Other triggers include tobacco smoke, detergents, perfumes, cosmetics, cleaning agents (especially chlorine), swimming pools, soaps, shampoos, powders, new furniture, cars, new clothes, electronics, kitchen utensils, shoes, air fresheners — especially car air fresheners.Often I do not need to smell anything. The reaction occurs through skin absorption. Masks do not protect me.The hardest thing for me is going to stores or crowded places. Even a few people nearby can be traumatic. I cannot touch products or packaging with bare hands. I use gloves or clean plastic bags as barriers. People often laugh at me, ask questions, or mock my behavior. Some rare empathetic individuals help me and treat my condition with respect when I explain that I have MCS. Most people have never heard of it and use it as a reason for bullying or trolling.This deeply hurts, and after six years I still have not developed emotional immunity to it.I also have severe appetite problems. I often eat only once a day — or once every three to five days — and sometimes not at all for a week. I have a strong metallic taste in my mouth that makes even drinking water difficult.I live an isolated life, but even my home does not feel safe. Every movement must be controlled. I cannot simply sit on a couch, relax, and watch TV. There is no remission. I live in constant exacerbation — sometimes tolerable, sometimes unbearable.I have severe sleep problems. During crises, I experience terrifying nightmares that linger for days. I have started sleepwalking, waking up in other rooms, checking whether someone was there. I hear imagined sounds, footsteps. My central nervous system is under constant strain.I suffer from deep depression. I have no goals, no plans, no joy. I stopped smiling. I was once a strong, driven person. Now I feel completely exhausted.I must use protective layers everywhere. I cannot sit in public places without placing a barrier underneath me, because I never know who sat there before. I cannot open doors with bare hands. Contact with surfaces or clothing in public spaces is dangerous.I do not have medications for MCS. I sometimes use Histaminum C6 and remedies such as Byron. Byron completely removes my symptoms for about 12 hours and makes me feel like a healthy person — but it severely damages my kidneys. I have uremia, and kidney crises are far more dangerous than MCS itself, so I use these substances only in extreme cases.I know other people with MCS who benefit from Histaminum, but they do not have kidney failure.My condition is highly complex. Initially, I had a chronic viral illness that triggered increasing allergic reactions. About 1.5 years later, I was advised by a doctor to take Chinese supplements. That single exposure triggered a catastrophic reaction — MCS and uremia developed in one day, not gradually.My kidneys cannot eliminate toxins or histamine properly. Kidney transplantation is not an option. With MCS, immune dysfunction would simply re-trigger the same condition. Antihistamines severely overload my kidneys and cause dangerous renal crises.Many doctors claim MCS is not a real allergy, yet antihistamines help. This contradiction highlights how poorly studied this condition remains. Many doctors simply deny its existence.Over the past six years, I have frequently experienced suicidal thoughts — not from desire, but from hopelessness, pain, and exhaustion.I spend most of my time at home. Occasionally, I rent places near the sea, far from people. Nature and silence help temporarily. Swimming in the sea makes me feel almost like the person I was before the illness.The Dead Sea brings the strongest improvement. Detoxification occurs, histamine decreases, the nervous system stabilizes, appetite returns — but only temporarily, for two or three weeks.I have no permanent solution. I function better in warm climates. Summer is much easier for me. I have no pollen allergies, no reaction to flowers, and so far no asthma.

Thank you so much for your kind words. That’s exactly why I came here — to find people who truly understand what it’s like to live with this. I often feel like a freak in the outside world, but knowing there are others who really know how hard this is already helps a lot.

No, no, no - life is messy, but you are not @nat1986 . And you are definitely not a freak, but I do understand, because that's what I've been telling myself before as well.

I am ill with ME and easily overwhelmed or overstimulated, but that is only a glimpse compared to what you are dealing with. And others with MCS.
But the mental, social, emotional part of being a chronic is awfully familiar to lots of people here, at least to me. Hence the feelings of being unworthy as mentioned above.

For physical health reasons I try to live non-toxic, mostly avoiding anything synthetic, even clothing and the likes. And who ever invented a house fragrance?!?! I am desperate to get my nervous system back on track… to calm down…
For mental health reasons I can only tell you that you get to feel what you feel and to find tiny bits of things that are you: make you smile, give you relief, offer distraction. Was there something today that was some sort of highlight?

I am off to bed now, talk later one of these days :)