Question about scents

[outdamnspot]

I had a question for people who are sensitive to scents, perfumes etc. I understand this is a facet of MCAS and that people will experience outright allergic reactions in response to encountering them. However, last year I started to notice I would crash in reaction to using floor-cleaning chemicals like bleach etc. It's hard to tell what is 'placebo' I guess because my CFS is severe and I also have high anxiety (OCD). My mom uses a lot of scented candles in the house etc. and also perfumes in the bathroom; she doesn't do anything to accommodate my CFS so I haven't bothered explaining how they affect me, but will often hold my breath to avoid inhaling the scents.

Anyway, I guess due to my OCD, this is starting to turn into a kind of phobic avoidance, but it's really hard to tell with severe CFS when anything can trigger a crash really. For example, she put a new scented handsoap in our bathroom today and smelling it on my hands is causing a lot of anxiety (because I'm worried about whether it's triggering symptoms).

Is there any reason we should be sensitive to all scents in general, or is it something more related to what's in the specific chemical (i.e. with the floor cleaner etc.). I don't get allergic reactions, but just wondering if I should be avoiding all soaps etc. at this point.

 

[hangininthere]

Most perfumes make me feel sick all over, but some don't. It's got to be because the ingredients do vary.

Patti

 

[Sundancer]

I started to react on chemical smells some years ago, looking back I know that this illness was then knocking on the door.

I think, but that's just my opinion, that it has to do with a detoxing problem of the body. I get very ill from several chemical smells and ask people when they visit me to not wear any. It almost instantly shuts down my brain and triggers PEM.
But no allergic reaction ( even though my breathing can become worse, but thats part of overload of body)

I think there are several theories of why this happens.

best is to avoid it entirely but reading your story that could be hard,

and it is only chemical smells that i react to, I've a very nice bar of soap that my son bought for me ( on specific request, that one and no other) it naturally scented and I love it for my bath. Now that it's spring I enjoy the smell of a flowering shrub in my garden etc.

I've found out by trial and error what works. there are nonperfumed cleaning things but I have not used them yet. I ask the lady who does my cleaning to use only small amounts of washing-gel when she washes my clothing and we found one general cleaner that i don't react to ( very much).

I miss burning incense...but do not dare it (yet)

 

[caledonia]

So frustrating that your mother is not accommodating to your CFS.

What you are describing is multiple chemical sensitivities, which I also have.

The reason it occurs is that there is a logjam in the liver being able to process chemicals. Specifically, phase 1 liver detox is speeded up while phase 2 is slowed.

There are many things which can be done to help with MCS.
1) avoidance - my suggestions for your situation would be to (secretly?) replace what your mother buys with scented things which don't bother you, and/or get a HEPA filter air purifier for your bedroom, or whatever room you spend the most time in.

You may be able to successfully secretly swap out products if you do it gradually and your mother isn't very observant. You may be able to water down bleach products so that there is still somewhat of a scent, but it's not so overwhelming.

2) supplementation - the following supplements have been helpful for myself and/or other people as they help with the liver phase problem by slowing phase 1 and/or speeding up phase 2 -
vitamin C
milk thistle
niacinamide (the amide version of niacin, not nicotinic acid which is what is usually called niacin)

There may be other things which are also helpful.

Note that one of the symptoms of MCS is anxiety, as well as brain fog, dizziness, feeling sick in general, etc. So the anxiety issue with the soap may not be due to OCD, it could be that the OCD or anxiety is literally due to the soap and all the scents around the house.

As far as cleanliness and not using soap - most cleaning occurs by using hot water and some kind of physical scrubbing action. Soap just makes water wetter by breaking down the surface tension, it doesn't actually clean anything by itself.

 

[Starsister]

Scents and chemical sensitivities was my first really obvious symptom of CFS or whatever I have. It started with tobacco smoke in 70 s and 80 s, then newspaper print, and on from there. Anything airborn bothers me , whether chemical or not. So dusappointing when Sven flowers from outside started bothering me. Now that I realize that I have a sensory processing disorder, I'm not sure if it's the scent or just too much stimulation. Even food smells trapped in the house bother me. Fortunately my bedroom is far away from the kitchen.

Scented candles, perfumes, natural oils, and scented cleaning agents have been taboo for years for me. I have to get my house exterminated for bugs every year and always worry what they are using...I did all the research on what was less toxic to me, and decided going with the mire toxic unscented was a better option for me. I'm at the age where I'd just rather die from slow poisoning from pesticides than be sick immediately and non fipunctiinal because of fumes.

Fumes can set me off into a whole spiral,down if symptoms and reactions to everything, even eating foods. I go into a mode that I call " reactive phase" and just have to isolate myself from smells, noise, hot, cold, fabrics, and even stop eating just to get back to balance.

If you are living with other people, there is no way that you should be subjected to toxic perfumes or any scents and chemicals. I have to avoid the cleaning and hand soap sections in grocery stores..I think even the stores should put that stuff behind locked glass doors.

 

[outdamnspot]

So frustrating that your mother is not accommodating to your CFS.

What you are describing is multiple chemical sensitivities, which I also have.

The reason it occurs is that there is a logjam in the liver being able to process chemicals. Specifically, phase 1 liver detox is speeded up while phase 2 is slowed.

There are many things which can be done to help with MCS.
1) avoidance - my suggestions for your situation would be to (secretly?) replace what your mother buys with scented things which don't bother you, and/or get a HEPA filter air purifier for your bedroom, or whatever room you spend the most time in.

You may be able to successfully secretly swap out products if you do it gradually and your mother isn't very observant. You may be able to water down bleach products so that there is still somewhat of a scent, but it's not so overwhelming.

2) supplementation - the following supplements have been helpful for myself and/or other people as they help with the liver phase problem by slowing phase 1 and/or speeding up phase 2 -
vitamin C
milk thistle
niacinamide (the amide version of niacin, not nicotinic acid which is what is usually called niacin)

There may be other things which are also helpful.

Note that one of the symptoms of MCS is anxiety, as well as brain fog, dizziness, feeling sick in general, etc. So the anxiety issue with the soap may not be due to OCD, it could be that the OCD or anxiety is literally due to the soap and all the scents around the house.

As far as cleanliness and not using soap - most cleaning occurs by using hot water and some kind of physical scrubbing action. Soap just makes water wetter by breaking down the surface tension, it doesn't actually clean anything by itself.

Thanks for your reply. I do coffee enemas, which I believe help liver detox (?) and also take time-release Vitamin C at night, which I have noticed tends to reduce crashes from certain things the next day. What I'm confused about is whether it's the scent itself which is a problem, or the product? For example, the handsoap I mentioned yesterday that she put in our bathroom is actually listed as 'soap free' on the label, but has a strong scent .. so I wonder if that could cause an issue regardless of whether the product has reduced chemicals etc.

 

[RWP (Rest without Peace)]

@outdamnspot

My wife has had severe MCS for many years, and her doctor expalined that there are unlisted chemicals in all commercial products that enter due to sanitizing machinery or combining with other things in the formula to produce a toxic end-product. But you will have no way of knowing what those are, because they are not listed.

My advice to you would be to find things that are UNSCENTED, not just "Soap Free." Even there, you may react negatively to the smell of the UNSCENTED product, so just trust your nose and your common sense. Look for one made with the fewest ingredients and/or the most natural ingredients (no guarantee even still, but it's a start).

Whether or not you are truly developing chemical sensitivities, please don't blow it off and try to convince yourself not to take it seriously. If you end up being OK over time, you won't have lost anything. But if you are getting sensitive, there's no "winning" against it.

RWP + PWR

 

[outdamnspot]

@outdamnspot

My wife has had severe MCS for many years, and her doctor expalined that there are unlisted chemicals in all commercial products that enter due to sanitizing machinery or combining with other things in the formula to produce a toxic end-product. But you will have no way of knowing what those are, because they are not listed.

My advice to you would be to find things that are UNSCENTED, not just "Soap Free." Even there, you may react negatively to the smell of the UNSCENTED product, so just trust your nose and your common sense. Look for one made with the fewest ingredients and/or the most natural ingredients (no guarantee even still, but it's a start).

Whether or not you are truly developing chemical sensitivities, please don't blow it off and try to convince yourself not to take it seriously. If you end up being OK over time, you won't have lost anything. But if you are getting sensitive, there's no "winning" against it.

RWP + PWR

Thanks for the help, and I'm sorry to hear about your wife. Do you think the problem would also lie in any kind of skin exposure to the chemicals, or with inhaling them? Part of the reason I ask is, for example, the bathroom downstairs has a lot of perfumed scents (my mother runs a daycare at home, so I guess it's necessary). If I do use that bathroom, I simply hold my breath .. which is annoying, but not the end of the world, and it's the only room really where the scents are a big problem. Sometimes it's just easier to do that than have to explain to everyone. But I wasn't sure if not inhaling would help the issue.

 

[caledonia]

Thanks for your reply. I do coffee enemas, which I believe help liver detox (?) and also take time-release Vitamin C at night, which I have noticed tends to reduce crashes from certain things the next day. What I'm confused about is whether it's the scent itself which is a problem, or the product? For example, the handsoap I mentioned yesterday that she put in our bathroom is actually listed as 'soap free' on the label, but has a strong scent .. so I wonder if that could cause an issue regardless of whether the product has reduced chemicals etc.

In my experience, it's mainly the scent, so not inhaling should be helpful. Although I did have an issue with antiperspirant which contained formaldehyde, and when I put it on my skin, I started feeling strange and anxious.

In other cases, I've developed skin rashes, but I think that's a different thing. I wouldn't call it MCS. More like sensitive skin or something. Although anything you put on your skin does get absorbed into your body, so it's another load that your liver has to detoxify if there is something toxic in it.

Yes, the coffee enemas are supposed help increase glutathione, which is produced in the liver and is the body's major antioxidant which helps detoxify chemicals.

 

[RWP (Rest without Peace)]

Thanks for the help, and I'm sorry to hear about your wife. Do you think the problem would also lie in any kind of skin exposure to the chemicals, or with inhaling them? Part of the reason I ask is, for example, the bathroom downstairs has a lot of perfumed scents (my mother runs a daycare at home, so I guess it's necessary). If I do use that bathroom, I simply hold my breath .. which is annoying, but not the end of the world, and it's the only room really where the scents are a big problem. Sometimes it's just easier to do that than have to explain to everyone. But I wasn't sure if not inhaling would help the issue.

Yes, that would minimize the issue. Hope that helps. So sorry for your emotional and physical circumstances.

Thankfully, my wife's MCS made a dramatic improvement 23 years ago due to a nonconventional treatment she did for ovarian cancer. She used to be one of the most severe MCS patients we'd ever heard of (similar to Gillian McCarthy), but this made a massive change for the better.

RWP + PWR

 

[outdamnspot]

Just curious, is there a difference in terms of chemical and natural scents? For example, should flowers cause less issue than perfumes etc.?

 

[Learner1]

Yes. I have a big problem with perfumes, chemicals, tobacco smoke, etc. Being in public places with people who have used personal care products loaded with scents and chemicals is difficult.

However, I buy shampoos, lotions, deodorants, etc. made from organic/natural products that have natural scents (like orange, vanilla, lavender, mint, coconut, etc.) and have virtually no problem. It's the artificial chemicals that set me off.

Perhaps the children who are clients of your mom's daycare might also benefit from being exposed to natural products vs. toxic, endocrine disrupting chemicals...

In addition to @caledonia 's suggestions, B5 can also help you flush things out of your system faster.

 

[caledonia]

Just curious, is there a difference in terms of chemical and natural scents? For example, should flowers cause less issue than perfumes etc.?

I'm the same as @Learner1 - natural scents are generally ok, but anything artificial could be a problem.

 

[perchance dreamer]

Even natural scents set me off. Scents, other than those of food, clog my sinuses and stuff me up.

I live in Austin, TX, and I usually don't leave my car windows cracked in the summer because if someone nearby smokes, the smoke just does me in. Cigarette smoke is the absolute worst for me.

 

[Starsister]

Just curious, is there a difference in terms of chemical and natural scents? For example, should flowers cause less issue than perfumes etc.?

Tobacco smoke, newspaper print and perfumes were the worst to start, but after 30 years, for me, even scented flowers are a problem, and natural essential oils. And food cooking and filling the house....with the food smells, I wonder if it is just that it overstimulates me in general. My bedroom is far from the kitchen but the last time I used a crockpot, the smell lingered and I had trouble sleeping all night, had to open the windows in winter to air house out . It became almost psychological. As I felt almost claustrophobic not being able to get away from the smell...even though it was a smell I loved.