Hi I have a bad reaction to the smell of perfumes and deoderants and some household cleaning products.Just like this morning my husband was sparing on his deoderant and it always makes me feel like I can't breath, But it was worse today I felt like I couldn't breath,I started getting sweaty and felt like I was going to pass out I even opened up the windows and I got a bad case of diareah (Sorry but that sounded grose) but I tried telling him to please buy a different kind or spray it in the car on his way to work. That is like perfumes they make me sick to and it gives me bad headaches. So please anyone out there let me know if this happens to you with fm or if it could me something else. Thanks.
Does anyone have problems with the smell of perfume or deoderant?
- Thread starter muffey
- Start date
Hi Muffey,
I was diagnosed with MCS - multiple chemical sensitivity a few years back. Basically means that certain scents and certain chemicals make me sick.
Certain things like spray items (like deodorant), hairspray, detergents, etc. get to me the most. I used to work in a hair salon and was forced to quit after a year due to my chemical sensitivity. I would feel sick to my stomach after being in the salon for like 5 minutes. It's awful.
I try to avoid chemicals that I know affect me - but when I can't I usally get sick just as you have. Terrible headache, stomach pains and diarhea, dizziness, etc.
No fun at all!
Hugs,
Jillie
[This Message was Edited on 04/15/2004]
I was diagnosed with MCS - multiple chemical sensitivity a few years back. Basically means that certain scents and certain chemicals make me sick.
Certain things like spray items (like deodorant), hairspray, detergents, etc. get to me the most. I used to work in a hair salon and was forced to quit after a year due to my chemical sensitivity. I would feel sick to my stomach after being in the salon for like 5 minutes. It's awful.
I try to avoid chemicals that I know affect me - but when I can't I usally get sick just as you have. Terrible headache, stomach pains and diarhea, dizziness, etc.
No fun at all!
Hugs,
Jillie
[This Message was Edited on 04/15/2004]
beverly20024
New Member
I've suffered for YEARS from perfumes and strong smells. For me, I it's allergy related. I can hardly stand to walk through department store perfume counters. I plug my nose. Now my son does too. We must look like a pair of nutcases.
I've had FM for 8 years, but the allergy to strong scents I've had even longer. Asthma and allergies run in my family. I now get migraines from strong scents. Hate that! I even use unscented shampoos from health food stores, because scented ones burn my eyes. And I use unscented Mitchum. Definitely buy your husband at least a roll-on, unscented.
Sounds like you've developed allergies. Best to check with your doctor. But, I have often read that people with FM and CFS are sensitive to scents and strong chemicals.
Don't be afrid to make changes. Get rid of those things that bother you and replace them. I used to suffer along, not wanting to ask people to change the scents they wore. Instead I suffered daily with a headache!! Crazy. My husband changed his favourite soap which burned my eyes, to a natural scented one. And he uses unscented roll-on deodorant. My son changed to an unscented gel. Everyone needs to get on board and support you.
When friends come over, they use unscented hairsprays and no perfume. You just let people that care about you know, and the ones that really care will come through. The rest don't count.
Take care of yourself!!
Bev
I've had FM for 8 years, but the allergy to strong scents I've had even longer. Asthma and allergies run in my family. I now get migraines from strong scents. Hate that! I even use unscented shampoos from health food stores, because scented ones burn my eyes. And I use unscented Mitchum. Definitely buy your husband at least a roll-on, unscented.
Sounds like you've developed allergies. Best to check with your doctor. But, I have often read that people with FM and CFS are sensitive to scents and strong chemicals.
Don't be afrid to make changes. Get rid of those things that bother you and replace them. I used to suffer along, not wanting to ask people to change the scents they wore. Instead I suffered daily with a headache!! Crazy. My husband changed his favourite soap which burned my eyes, to a natural scented one. And he uses unscented roll-on deodorant. My son changed to an unscented gel. Everyone needs to get on board and support you.
When friends come over, they use unscented hairsprays and no perfume. You just let people that care about you know, and the ones that really care will come through. The rest don't count.
Take care of yourself!!
Bev
Do a google search for -
Dr. Grace Ziem's
Environmental Control Plan
for Chemically Sensitive Patients
and read up, it contains everything you need to know.
Also look up the "Chemical Injury and Information Network", it's a great organization with cutting edge knowledge.
You must avoid these exposures or you will only get sicker.
Many unscented natural products, grooming and cleaning can be purchased at Whole Foods, Wild Oats, or your neighborhood health food store.
I also get very sick from perfumes deodorants and other. My husband and I buy unscented deodorant. I can't go in to a candle store or a bath store. The smells are way to much. I can't walk past perfume displays where you can put some on. I get very bad headaches and dizzy feeling. Sometimes I feel like I have it in my mouth. Yuk Somtimes I will cook something and the smell makes me sick and then I can't eat it. donnadee
Thank you all very much for the info. Belive me I will try it. I have showed my husband some of the messages and we are going to start getting stuff that is unscented because I't is getting to where I can't standing any kind of strong smells without getting sick,My sister had got me a scented candle thast was pumpkin and spice and everytime she comes over she ask why I haven't burnt it,And I try telling her that it makes me get a headache and makes me get dizzey I don't think she belives me but I'm going to show her these masseges so that she will understand that there is people that have fm or any other problems that they get get sick from the smells like I do. And I thank everyone very much,this is a great message board. It has also helped reading others that have posted messages That where not alone in this fight against this invissibe disease. Thanks again and hugs.
MsBrandywine
Member
I have to be really careful with hairsprays and all of the cleaning products and perfumes. I get the unscented /non aerisol..hairsray but I dont use it very often.. alot of times I even step out on my porch to spray that..
My husband gets so upset with me when I say that Im not able to be around the strong chemicals.. He tells me its all in my head; grrrrr..
When I buy things to clean with.. I get stuff that doesnt have alot of smell or unscented if at all possible.. He will go in and find stuff that smells good to him .. whether or not I can be around the smell.
The one time he bought lysol spray and it made me very dizzy and sick to my stomach too.
My son used to use some kind of body deoderant.. before he moved out and got married. when ever he used it.. It would make my mouth feel kind of numbish just being around it.. I used to hide the stuff on him.. lol..
that or take it to his truck and put it on the seat so he would spray it there instead of here inside.. It always give me terrible headaches too..along with breathing problems.. just as you described..
My husband gets so upset with me when I say that Im not able to be around the strong chemicals.. He tells me its all in my head; grrrrr..
When I buy things to clean with.. I get stuff that doesnt have alot of smell or unscented if at all possible.. He will go in and find stuff that smells good to him .. whether or not I can be around the smell.
The one time he bought lysol spray and it made me very dizzy and sick to my stomach too.
My son used to use some kind of body deoderant.. before he moved out and got married. when ever he used it.. It would make my mouth feel kind of numbish just being around it.. I used to hide the stuff on him.. lol..
that or take it to his truck and put it on the seat so he would spray it there instead of here inside.. It always give me terrible headaches too..along with breathing problems.. just as you described..
WoodstocksMusic
New Member
I never thought about chemical sensitivities.
With this week being spring break at school I took my 2 sons ages 14 and 7 years old to Little Rock to shop for new bedroom furniture and other boy stuff. My 14 year (well...15 in a couple more days) got his learners permit when he turned 14 and drives everywhere for me. The trip to LR is about a 2 hours drive for us which makes it a wonderful day trip(when you have somebody who can drive for you).
Early afternoon we had ventured into Dillards in the mall, and before we left that store I wound up with a headache.
It started in my eyes and by the time we finished our supper at red lobster(2 hours later) and started for home I felt like the top of my head would explode off like a rocket. By the time Dave got me home (9:00pm) I just crawled into bed, but by midnight I was up "throwing up" and still had a "hurting & sore" head at noon today. Heck, for that matter I still have headache now 36 hours later... it's just a very mild one now!
I thought maybe I was having an allergic reaction to the shellfish (which I've never had before.)Either that or Dave's driving had left me with that migraine (but he really is not that bad of a driver after chaeuffering me around for a year now...I am so thankful he can assist me and he just loves being the man of the house when Daddy is at work!)
After reading this post I realize now that Dillards was very VERY "heavy" perfumed and I have always had problems being in closed-in rooms with people wearing heavy perfume. I am very fortunate in that I seldom have those kind of headaches that leave me sick at my stomach and hurting for 24 hours or more...
I will be more careful in the future to avoid those kind of stores on my outings so as not to ruin the trips (those boys would have just as soon not walked through the make-up department in Dillards as it was, and they will be overjoyed to learn that mom will be limited to sports usa on our fun trips!!!
With this week being spring break at school I took my 2 sons ages 14 and 7 years old to Little Rock to shop for new bedroom furniture and other boy stuff. My 14 year (well...15 in a couple more days) got his learners permit when he turned 14 and drives everywhere for me. The trip to LR is about a 2 hours drive for us which makes it a wonderful day trip(when you have somebody who can drive for you).
Early afternoon we had ventured into Dillards in the mall, and before we left that store I wound up with a headache.
It started in my eyes and by the time we finished our supper at red lobster(2 hours later) and started for home I felt like the top of my head would explode off like a rocket. By the time Dave got me home (9:00pm) I just crawled into bed, but by midnight I was up "throwing up" and still had a "hurting & sore" head at noon today. Heck, for that matter I still have headache now 36 hours later... it's just a very mild one now!
I thought maybe I was having an allergic reaction to the shellfish (which I've never had before.)Either that or Dave's driving had left me with that migraine (but he really is not that bad of a driver after chaeuffering me around for a year now...I am so thankful he can assist me and he just loves being the man of the house when Daddy is at work!)
After reading this post I realize now that Dillards was very VERY "heavy" perfumed and I have always had problems being in closed-in rooms with people wearing heavy perfume. I am very fortunate in that I seldom have those kind of headaches that leave me sick at my stomach and hurting for 24 hours or more...
I will be more careful in the future to avoid those kind of stores on my outings so as not to ruin the trips (those boys would have just as soon not walked through the make-up department in Dillards as it was, and they will be overjoyed to learn that mom will be limited to sports usa on our fun trips!!!
This is an older thread but I joined to reply. I became completely broken down and almost passed due to copious chemical exposures. (I was to obtain my MA at NYU in health care). That said, I rarely if ever used Rx, and grew up reading my mother's medical books as a child and turned to natural therapies. I had a background in the chemistry of arts and arts products. I was diagnosed with several disorders which MHO are all connected if one does not follow the AMA idea that organs are separate but are all connected. FM, CFIDS, MCS or EI, neurogenic and cognitive damage. The toxic chemicals travel up through the nose (or skin if you use sunscreen and certain soaps) to the limbic system of the brain and there starts much damage. Therefore when one says to you "It's all in your head" say yes it is and it does damage to yours (brain) as well. There is copious research in all of theses areas. I paid almost 2k for this at the time (copied) but now it is online. http://www.mcsrr.org/whoweare.html
The "sensitivity" in MCS does not mean one is sensitive but that the cells are so damaged it takes less and less exposure to have greater reactions. All organs are affected hence the term Multiple. The Pharmaceutical industry makes many of these toxic products, so in states NO medical freedom laws the term E.I. is often used. (and many M.D.s lose their license for practicing the use of avoidance of these products.. Dr. Grace Ziem is one example, as she was in MA. She worked in Vietnam assisting those who were affected by Agent Orange. She has a research arm and was brilliant. There are other examples of those that worked with patients with Chronic Fatigue now called CFIDS and who as well lost their practice.) A German company that makes aspirin as well makes pesticides, and on down the line for all of them.
This is not an allergy (IgE, IgA mediated but a form of poisoning.) That said, food allergies and other types are often involved as the immune system is not functioning to protect one. And the gut and bowel are involved. The bowel is the "seat of health".
1 - The chemicals used in synthetic fragrance products, from perfumes to dish soap are made from petroleum. Therefore it means one is being slowly poisoned (or quickly depending on other sources of toxic chemicals).
If one looks up the MSDS (Material safety data sheet) one will see how many of these common products are not safe. They are as well tested on animals (Draze Eye test - put into rabbit eyes where their vocal cords are cut so lab workers can not hear their screams) or 50/50 stomach tubes down beagles until 50 % die from the poisoning (not an easy way to go). Imagine a drain cleaner! If they have to do this one might ask how safe it is for me and the environment.
2 - Once the total body burden is reduced from all exposures, and nutritional needs are addressed (every cell and enzyme system needs all minerals, macro minerals, vitamins and enzymes to function) then healing can begin.
I went from completely paralyzed (Paralytic "fatigue" - the cells were so damaged the little organs inside - organelles did not function - including those that produce energy - the Mitochondria. Live blood test - only certain states allow these, showed much damage in all types of cells.).
All of my organs were breaking down. (I had worked when smoking was not banned anywhere including college and many renovations at work sites and my bld apt after a fire). I had blood seeping out of my pores.
I used the Gerson M.D. Cancer Therapy (a friend did this for me after her grandmother recovered and lived another 30 years) superb nutrition and certain supplements plus means to detox. Living in NYC meant I could then do other therapies (Chinese, Ayurvedic and others). It took years to be able to function and walk again, and to form a thought.
At age 44 however, I was never able to return to obtain my Masters (one would be exposed all over again) as one has to practice avoidance.
The "sensitivity" in MCS does not mean one is sensitive but that the cells are so damaged it takes less and less exposure to have greater reactions. All organs are affected hence the term Multiple. The Pharmaceutical industry makes many of these toxic products, so in states NO medical freedom laws the term E.I. is often used. (and many M.D.s lose their license for practicing the use of avoidance of these products.. Dr. Grace Ziem is one example, as she was in MA. She worked in Vietnam assisting those who were affected by Agent Orange. She has a research arm and was brilliant. There are other examples of those that worked with patients with Chronic Fatigue now called CFIDS and who as well lost their practice.) A German company that makes aspirin as well makes pesticides, and on down the line for all of them.
This is not an allergy (IgE, IgA mediated but a form of poisoning.) That said, food allergies and other types are often involved as the immune system is not functioning to protect one. And the gut and bowel are involved. The bowel is the "seat of health".
1 - The chemicals used in synthetic fragrance products, from perfumes to dish soap are made from petroleum. Therefore it means one is being slowly poisoned (or quickly depending on other sources of toxic chemicals).
If one looks up the MSDS (Material safety data sheet) one will see how many of these common products are not safe. They are as well tested on animals (Draze Eye test - put into rabbit eyes where their vocal cords are cut so lab workers can not hear their screams) or 50/50 stomach tubes down beagles until 50 % die from the poisoning (not an easy way to go). Imagine a drain cleaner! If they have to do this one might ask how safe it is for me and the environment.
2 - Once the total body burden is reduced from all exposures, and nutritional needs are addressed (every cell and enzyme system needs all minerals, macro minerals, vitamins and enzymes to function) then healing can begin.
I went from completely paralyzed (Paralytic "fatigue" - the cells were so damaged the little organs inside - organelles did not function - including those that produce energy - the Mitochondria. Live blood test - only certain states allow these, showed much damage in all types of cells.).
All of my organs were breaking down. (I had worked when smoking was not banned anywhere including college and many renovations at work sites and my bld apt after a fire). I had blood seeping out of my pores.
I used the Gerson M.D. Cancer Therapy (a friend did this for me after her grandmother recovered and lived another 30 years) superb nutrition and certain supplements plus means to detox. Living in NYC meant I could then do other therapies (Chinese, Ayurvedic and others). It took years to be able to function and walk again, and to form a thought.
At age 44 however, I was never able to return to obtain my Masters (one would be exposed all over again) as one has to practice avoidance.
Mikie
Moderator
Dear Sazure,
I am so sorry to read about your experience. Thank you for posting this information.
I recently posted about exposure to some scent from a friend's tote bag that she brought me. It made me violently ill. I had to wrap it in plastic and return it to her. She notices nothing and doesn't know what the scent is. I am not sensitive to all scents but am highly sensitive to scented dryer sheets. That is what this smelled like. I often can't even walk near the detergent aisle in the store.
I want to wish you the best of luck.
Mikie
I am so sorry to read about your experience. Thank you for posting this information.
I recently posted about exposure to some scent from a friend's tote bag that she brought me. It made me violently ill. I had to wrap it in plastic and return it to her. She notices nothing and doesn't know what the scent is. I am not sensitive to all scents but am highly sensitive to scented dryer sheets. That is what this smelled like. I often can't even walk near the detergent aisle in the store.
I want to wish you the best of luck.
Mikie
Thanks Mike, If I ramble forgive up front - been living in almost total isolation for decades, covid shutdown almost unbearable. (could go to park, library prior). Thanks for your regard, I do appreciate that.
.................................
Unfortunately, the molecules of the synthetic fragrance "trans migrates" (one molecule at a time) through the plastic. (Just as it does our tissues esp the brain where it enters or the skin). It is all actually complicated (NIOSH has articles for occupational workers. But mention MCS and many aspects of Government deny it - some of the same chemicals, however! And the injured vets who were involved with chemical assualts. Vietnam totally ignored even as their babies were born with birth defects, and of course Gulf War Veterans and other Wars) Some Senator mentioned MCS and returning vets (in my archives somewhere) where the citizens exposed to common products had the same symptoms and injury as vets returning from chemical warfare.
Even natural products like oils have toxins in them which some react to. All plants defend themselves against fungi, insects, animals, bacteria, and viruses and do so with many means and toxic chemicals.
I recall in my apt bld in NYC (where I wrote a docs letter and she signed it but again and again they would put up on each floor those horrific "deodorizer" and in the garbage rooms - I was trapped. The ADA (ingress egress - in out traffic, and how I got smoking banned in small local parks) and other laws did not matter to them.
So one night with mask on - and a ladder and a crowbar (sculpture) I pulled them all out. (nothing to lose at that point as they had many medical letters) and put them in a huge thick plastic bucket (type plaster comes in. But the smell came through! Trans migration. I had to put them out on the fire escape. I later brought the bucket to the new manager (she had a background in chemistry, but husband was a lawer). I opened it and she almost gagged and told me to get it out! What amazed me is how easily these molecules could eventually travel though such thick hard plastic.
------------------
And while you may not "react" to one but another (again your body is being poisoned) eventually there is what is called the "spreading phenomenon" meaning as various organ systems break down (liver, brain, kidney, immune, heme - blood, and all others) then you will note eventually mostly all. (different chemicals but they are all toxic and do damage to this or that). Downy and Lysol are at the top. But carpet glue, cleaners so on and on all do harm. Best is no exposures - the CURE is avoidance!
As well (this I learned from my old Gerson Max, MD. books - what he called the "allergic "reaction. (only term he knew to use in the 40's) If one had that it was a sign that the body was beginning to heal. Before it was so damaged it could not.
Like a boxer who eventually can not bounce back - kapoot.
--------------------
It is the same with MCS - as one heals one starts to react more to toxic chemicals - a GOOD sign as they are harmful and the body is saying "stay away". Having a background in arts chemistry ((and unfortunately exposed myself even with masks and huge ceiling fans at college in certain art classes along with second hand smoke as it was not yet banned (I helped get in banned in NYC after CA) but I recall a printing class where I just left and dropped out. The laws are better but many young people in the arts or those spray paints I see people using on Youtube with NO protective gear!!! (again I use none of these now due to animal testing)
So the immune system (which involves most all systems) reacts to try to protect itself. As it is harmed it can not react any more (complicated t-cells and other means) and thus one does not EVEN have a reaction. A bad sign of one having gone to a further stage of harm. (see below on the four stages - although this boundary is arbitrary)
--------------------------------------
Different stages (I don't agree with the idea of wearing a "facemask" I had to wear a 3m type.
http://www.nettally.com/prusty/mcs1.htm
I have this research but as mentioned it's all online now. (greatly edited as the real research with all of the citations is long - my SSD report was 31 pages long as it and other diagnosis FM, CFIDS was not well known at the time (90's) at least in the general population (soldiers always Vietnam others in WWII and even WWI)
-------
One of the MOST important legal decision (was hard to find I had the hard copy) (handicap and disabled are interchangeable) Also note Section 504 of the Rehabilitation Act of
YOUR RIGHTS UNDER SECTION 504 OF THE REHABILITATION ACT
www.hhs.gov/.../resources/factsheets/504.pdf
Section 504 of the Rehabilitation Act of 1973 is a national law that protects qualified individuals from discrimination based on their disability
I dread to find better housing as few know the actual laws (thousands of pages long) when I ask for simple accommodations (no carpet shampoo) which are all mandated by Fair housing and HUD. Even with a history of SSD they ask that I see a doc or social worker to write a letter to show I am disabled!!! I mean who knows of the GME - 0009! Equally powerful laws for those in traditional housing as many places for eldery and other groups use HUD money to build their buildings. HUE overseas Fair Housing so there is overlap.
Binder and Binder (judicial decision and my lawyer in NYC).
If a person is considered disabled under SSA then *a fortiori one is considered disabled for ALL other purposes (including housing). *from the stronger argument. And a history of such carries equal weight. I have been discriminated against (not new to MCS) but at an elderly age now and very tired of the huge effort to go up this hill again and again.
.............
The only thing I regret is that I was not able to return to work, obtain my MA's and the 108k Salary (95 good income and was to work with elderly or vets in OT) and do my art - my bliss! I am now in WA in not bad public housing but in a high crime area (the MD I see now tells me my stress hormones are HIGH! lol) And the far left wants Medicare for all (preferred my own health insurance prior- medicare pays for nothing that assists those with mcs) and it means Government controlling ones health care??? Ikes! I pay out of pocket but on 10K a year not easy to keep up.
If anyone EVER needs help with social security disability just let me know. Or housing for that matter. Tons of archived laws. (have the functionality test which is key along with other items. A diagnosis does not mean SSD but a long list of requirements.)
But we ALL have our burdens to bear and I have accepted mine (sorta lol). And with decades in research I am happy to point others in a better direction (hard to even find online now - Google search anti mcs so on). And the anti mcs web md lol.
.................................
Unfortunately, the molecules of the synthetic fragrance "trans migrates" (one molecule at a time) through the plastic. (Just as it does our tissues esp the brain where it enters or the skin). It is all actually complicated (NIOSH has articles for occupational workers. But mention MCS and many aspects of Government deny it - some of the same chemicals, however! And the injured vets who were involved with chemical assualts. Vietnam totally ignored even as their babies were born with birth defects, and of course Gulf War Veterans and other Wars) Some Senator mentioned MCS and returning vets (in my archives somewhere) where the citizens exposed to common products had the same symptoms and injury as vets returning from chemical warfare.
Even natural products like oils have toxins in them which some react to. All plants defend themselves against fungi, insects, animals, bacteria, and viruses and do so with many means and toxic chemicals.
I recall in my apt bld in NYC (where I wrote a docs letter and she signed it but again and again they would put up on each floor those horrific "deodorizer" and in the garbage rooms - I was trapped. The ADA (ingress egress - in out traffic, and how I got smoking banned in small local parks) and other laws did not matter to them.
So one night with mask on - and a ladder and a crowbar (sculpture) I pulled them all out. (nothing to lose at that point as they had many medical letters) and put them in a huge thick plastic bucket (type plaster comes in. But the smell came through! Trans migration. I had to put them out on the fire escape. I later brought the bucket to the new manager (she had a background in chemistry, but husband was a lawer). I opened it and she almost gagged and told me to get it out! What amazed me is how easily these molecules could eventually travel though such thick hard plastic.
------------------
And while you may not "react" to one but another (again your body is being poisoned) eventually there is what is called the "spreading phenomenon" meaning as various organ systems break down (liver, brain, kidney, immune, heme - blood, and all others) then you will note eventually mostly all. (different chemicals but they are all toxic and do damage to this or that). Downy and Lysol are at the top. But carpet glue, cleaners so on and on all do harm. Best is no exposures - the CURE is avoidance!
As well (this I learned from my old Gerson Max, MD. books - what he called the "allergic "reaction. (only term he knew to use in the 40's) If one had that it was a sign that the body was beginning to heal. Before it was so damaged it could not.
Like a boxer who eventually can not bounce back - kapoot.
--------------------
It is the same with MCS - as one heals one starts to react more to toxic chemicals - a GOOD sign as they are harmful and the body is saying "stay away". Having a background in arts chemistry ((and unfortunately exposed myself even with masks and huge ceiling fans at college in certain art classes along with second hand smoke as it was not yet banned (I helped get in banned in NYC after CA) but I recall a printing class where I just left and dropped out. The laws are better but many young people in the arts or those spray paints I see people using on Youtube with NO protective gear!!! (again I use none of these now due to animal testing)
So the immune system (which involves most all systems) reacts to try to protect itself. As it is harmed it can not react any more (complicated t-cells and other means) and thus one does not EVEN have a reaction. A bad sign of one having gone to a further stage of harm. (see below on the four stages - although this boundary is arbitrary)
--------------------------------------
Different stages (I don't agree with the idea of wearing a "facemask" I had to wear a 3m type.
http://www.nettally.com/prusty/mcs1.htm
I have this research but as mentioned it's all online now. (greatly edited as the real research with all of the citations is long - my SSD report was 31 pages long as it and other diagnosis FM, CFIDS was not well known at the time (90's) at least in the general population (soldiers always Vietnam others in WWII and even WWI)
-------
One of the MOST important legal decision (was hard to find I had the hard copy) (handicap and disabled are interchangeable) Also note Section 504 of the Rehabilitation Act of
- Legal Opinion: GME-0009 - HUD
www.hud.gov/sites/documents/GME-0009LOPS.PDF
Legal Opinion: GME-0009 Index: 9.207 Subject: MCS Disorder and Environmental Illness as Handicaps March 5, 1992 MEMORANDUM FOR: Frank Keating, General Counsel, G FROM: Carole W. Wilson, Associate General Counsel for Equal Opportunity and Administrative Law, GM SUBJECT: Multiple Chemical Sensitivity Disorder
YOUR RIGHTS UNDER SECTION 504 OF THE REHABILITATION ACT
www.hhs.gov/.../resources/factsheets/504.pdf
Section 504 of the Rehabilitation Act of 1973 is a national law that protects qualified individuals from discrimination based on their disability
I dread to find better housing as few know the actual laws (thousands of pages long) when I ask for simple accommodations (no carpet shampoo) which are all mandated by Fair housing and HUD. Even with a history of SSD they ask that I see a doc or social worker to write a letter to show I am disabled!!! I mean who knows of the GME - 0009! Equally powerful laws for those in traditional housing as many places for eldery and other groups use HUD money to build their buildings. HUE overseas Fair Housing so there is overlap.
Binder and Binder (judicial decision and my lawyer in NYC).
If a person is considered disabled under SSA then *a fortiori one is considered disabled for ALL other purposes (including housing). *from the stronger argument. And a history of such carries equal weight. I have been discriminated against (not new to MCS) but at an elderly age now and very tired of the huge effort to go up this hill again and again.
.............
The only thing I regret is that I was not able to return to work, obtain my MA's and the 108k Salary (95 good income and was to work with elderly or vets in OT) and do my art - my bliss! I am now in WA in not bad public housing but in a high crime area (the MD I see now tells me my stress hormones are HIGH! lol) And the far left wants Medicare for all (preferred my own health insurance prior- medicare pays for nothing that assists those with mcs) and it means Government controlling ones health care??? Ikes! I pay out of pocket but on 10K a year not easy to keep up.
If anyone EVER needs help with social security disability just let me know. Or housing for that matter. Tons of archived laws. (have the functionality test which is key along with other items. A diagnosis does not mean SSD but a long list of requirements.)
But we ALL have our burdens to bear and I have accepted mine (sorta lol). And with decades in research I am happy to point others in a better direction (hard to even find online now - Google search anti mcs so on). And the anti mcs web md lol.
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Improving methylation and detox *might* help with MCS and sensitivity to smells. My personal experience on this is, the jury is still out. I sleep on a floor with some polyester pillows because I am allergic to all mattresses. As I improve a little, maybe I will try a mattress again soon.
It seems logical to me that if your body cannot neutralize environmental toxins via methylation, sulfation or other processes which have become broken, then the chemicals will cause severe reactions. Ideally, properly functioning detox processes should neutralize chemicals without disturbing our senses.
Just a fellow sufferer spitballing here. Im sure others know better than me about what is disfunctional with MCS.
It seems logical to me that if your body cannot neutralize environmental toxins via methylation, sulfation or other processes which have become broken, then the chemicals will cause severe reactions. Ideally, properly functioning detox processes should neutralize chemicals without disturbing our senses.
Just a fellow sufferer spitballing here. Im sure others know better than me about what is disfunctional with MCS.
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Received in my email and would add to what I already posted. I use the term POISONED as "sensitive" or "sensitized" which makes it seem that one is more "fragile" when these products contain highly toxic chemicals. OSHA and other agencies long knew of this from workers - it was considered "new" to the mainstream population when these products started being produced.
--------https://search.yahoo.com/yhs/search?p=sensitization%20of%20toxic%20chemicals&hspart=mozilla&hsimp=yhs-100&type=newtab-------
See the link for a simple chart of 20 top poisons in fragrance products - like breathing in gasoline and wondering why one is getting sicker and sicker, as many of these compounds can not be excreted but are stored in adipose tissues (fat cells) and are dumpled into the blood stream repeatedly during circadian systems.
-------https://ourlittleplace.com/health-risks-of-perfume/twenty-most-common-chemicals-in-thirty-one-fragrance-products-------
There is NO cure for chemical poisoning, just AVOIDANCE, and repair of the various complicated pathways (detox, enzyme so on).
Why not a roll-on? Have you tried having your doctor write a letter to him (I had Levine in NYC and Ziem in MA at the time). My x did not care and believe me if I had the income to move I would have. He used to smoke in the other room and I'd wake up with dire symptoms. I learned never move in with anyone unless one is married (protection legally). My oops. I often slept in the stairwell and out in the snow to avoid various products (and second-hand smoke). I have tried to attach a letter that she wrote (and other docs in NYC - we patients would type out and they would sign with their letterhead). I had to cut out the letterhead and signature and put it in two files - the gist is there I hope. (for him it did not matter!) But for my apt it did - once they receive such a letter (diff form for diff products used in the bld) one can then take legal action (NOT easy but hopefully they make a change).
It is a horrible thing when one's other members get it or not but chose not do allow you to avoid these products. (mine would spray me with cologne them when I was bedridden). I was stuck as no longer able to pay rent for higher prices in NYC. I knew of many people who were able and did break off these relationships. Ziem calls this "chemical assault" btw. (like someone hitting you).
I would say to some, if I put you into a closet and started spraying (mention some toxin they can understand) such as smoke from a fire, or gasoline spray, or terpantine - how would this make you feel if I kept you in the closet and you started getting sick and I said "doesn't bother me". (or some such).
It is poisoning them as well, and may or may not meet a higher total body burden when their various systems break down to a point where they notice (and may go to a regular doc who misses the connection).
Attachments
Mattresses for the most part are highly toxic... There are some (long ago on CIIN or maybe google it - such as down, or cotton filled, wool (wool is great) - forget what they are called - like those used on pull out couches).
Toxin free
toxin free mattresses - Yahoo Search Results
search.yahoo.com
Toxins in matresses
toxins in mattresses - Yahoo Search Results
search.yahoo.com
- Is Your Mattress Toxic? Hidden Dangers in Your Sleeping ...
redandhoney.com/is-your-mattress-toxic-hidden... - Nov 28, 2019 · Here’s a list of some of the worst materials used in conventional mattresses: Polyurethane foam (petroleum-based material that emits VOC’s) Formaldehyde (linked to asthma, allergies, and lung cancer) Flame retardants (linked to cancer and nervous system disorders) such as PBDE’s, which were very ...
Thanks Sazure for the mattress infos. Some point soon I will look into maybe a wool one, seems like the best option. I checked a few years ago for organic mattresses and I couldnt afford much. So I got used to sleeping on dollar general pillows on the floor. For some reason polyester is one of the only cheap materials that doesn't bother me. I do recall seeing some cotton and down mattresses and some people suggested they got flat too fast. I guess if i get one with springs that would solve that. I was so sick and mentally exhausted at the time that I just dropped pillows on the floor and gave up.
Feeling a little better now, so I will do some searching again I think.
Feeling a little better now, so I will do some searching again I think.
It is not easy with monetary restrictions as I myself know. (My SSD started at $500 a month when I was age 44)... I have an OLD mattress on those metal bed frames given me by a friend here in WA (TWIN lol). It was Gassed out. That said, lumpy! I have to put books here and there to support my spine and DREAD turning over, lol. It is not a priority now, as the wild fires had smoke coming in all the window seals and even up through the floorboard!!! Got one of the last Austin Air Juniors.
I know what you mean by pillows on the floor (polyester is often the least "allergenic" - ie the structure does not off gas, even though it's made from petro - most "plastics" are.) ) I slept on a old yoga matt. Some do towels so on. That said some do react to wool (natural oils). I have an OLD duvet covering (goose down) which needs fluffing up but the Thyroid issues made my connective tissues just DIE, lol. So I don't fluff. I take my bedding such as it is ( a towel and two small blankets from Walmart) and put it out in the sunshine and air on a stool (old school) to air it all out. I have huge beach towels - anything I could think of to pad it. The hot sun is provides great release of toxic chemicals.
I understand giving up as well - new Thyroid issues (x rayed as a baby) in a NON medical freedom state (won't even let me "participate"). I cry a lot and then get up and do my best... As I KNOW we all do.
I will "buck up" soon enough and start doing research. But does it matter in a state with traditional docs with your 15 minutes?
Those with family friend support are truly blessed. I know many are not. After decades the isolation is starting to get to me. Sorry if "off topic".
You can even take old comforters, bed futons and stack them.
There is a product - Smells be gone (Amazon I think has it now) all molecular gets out fragrance (I don't have a washer dryer here so hand wash, but when I lived where they did I washed twice with this to get out former users "downy" so on.