• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Multiple Chemical Sensitivity (MCS) - How Bad

Messages
26
I have severe MCS. With an airborne exposure my most common reaction is my throat spasming shut, restricting or completely cutting off my airflow. With an ingested exposure to chemicals I get a stomach ache, then vomiting with loss of bowel control. Note this is not my reaction to food sensitivities/intoelrances, just when there's a chemical exposure in the food I normally tolerate well.

I live in a porcelain trailer to avoid exposures. Before that I had become worse and worse until I was living in a bathroom 24/7 for several months, because every other room of the house was intolerable reactions.

My clothing has to all be homemade of unbleached, undyed organic fabric that's been boiled for a day or two, soaked in baking soda overnight, soaked in vinegar overnight, and then washed, then I test the fabric and if it's still not tolerable my caretaker goes through the whole process again. It must be line-dried due to the rubber fumes of the dryer. I became reactive to all my bedding, and until we could make a mattress I slept on bare wooden slats. I cannot tolerate soap, even organic soap with a single ingredient, so I do without. The only way I can be on the computer is because the fume-producing monitor is several feet away fro me in a closed cupboard with a hole leading tot he outside and a fan to create an airflow the blows the fumes out instead of in.

Even with keeping the doors and windows shut and an air purifier on high, when air pollution gets really bad in my area I'm forced to flee to cleaner air, because enough seeps in through the cracks to be life-threatening for me. Thankfully, there is a car that I don't react too badly to short term, and we're constantly in search of "safe houses" that I can stay in during just such emergency situaitons. I currently might have one...we'll find out this July 4th.

You know what I miss most? I miss being able to hug people and get a hug back. About a year ago was the last time I did so...got really ill from the exposure, but it was worth it...that time. I wish hugs were free. :(
Be careful with vinegar, I cannot support it now.
Before, I have cleaned my house with white vinegar, it is not possible any more in many quantity.
And I cannot eat classical vinegar because of histamine.
I wish you energy and hope.
 

belize44

Senior Member
Messages
1,646
Until recently, I didn't realize that I had this condition on top of the ME/CFIDS. I thought it was due to my autism. Today we were scheduled for a new internet install, meaning that someone comes out to the house and spends time walking around in here. I hadn't thought much about it, but made sure to schedule it for a Saturday so that my husband would be here. (I hate letting strange people in!) I decided to stay in the bedroom with the two cats, keeping the door shut. I first noticed the odd smell creeping beneath the bedroom door; (it's an ill fitting one due to the house being old.) Then I realized that I was smelling the person who was installing the new modems. Some kind of scented laundry stuff along with his own B.O.

Keep in mind this is a two story home! I nearly started to melt down as the alien cloying smell filled my space. I opened a window but it didn't help. I called my husband's cell phone and asked him to place a fan in the window at the front of the house facing out, so that the awful smell would be pulled out of doors. It didn't work. In the end, it took nearly three hours to kill that odor after the tech person left. I feel like I can still smell it in my nostrils and when I tried to have a meal, that smell mixed in with the taste of my food.

It's a crazy world if someone can pollute your entire home just by coming in for an hour!
 

hapl808

Senior Member
Messages
2,000
Keep in mind this is a two story home! I nearly started to melt down as the alien cloying smell filled my space. I opened a window but it didn't help. I called my husband's cell phone and asked him to place a fan in the window at the front of the house facing out, so that the awful smell would be pulled out of doors. It didn't work. In the end, it took nearly three hours to kill that odor after the tech person left. I feel like I can still smell it in my nostrils and when I tried to have a meal, that smell mixed in with the taste of my food.

It's a crazy world if someone can pollute your entire home just by coming in for an hour!

Yep, same. I don't even bother trying to explain it to others. I've noticed it even when getting groceries delivered. When I bring them inside, it usually triggers some coughing. Sometimes I can smell whatever - not sure if it's perfume or sanitizer or what. Sometimes I can't smell anything, but still triggers coughing. Wearing a good enough mask stops it, so it seems environmental.

But definitely makes me feel even more isolated and crazy, because I know no one else would truly believe that extreme of a reaction.
 

belize44

Senior Member
Messages
1,646
I can just imagine complaining to the internet provider; "By the way, can you tell your techies not to use scented products for a month before coming into my home?" :confused:o_O😀