Okay, I don't think I'm crazy…
I’ve been researching – because this illness is upsetting me so much. This morning while I was taking a shower (praise God that today I felt well enough to take one) I grabbed my new face cleanser to wash my face and noticed a “CAUTION:” on the tube. I thought that was odd so I went to look at the ingredients and one included similar components of the same chemical that was in my hair dye. I googled it and sheesh! I don’t understand why of how they can use these hazardous chemicals on our own bodies! (Dipropylene Glycol)
Anyway, I also came across something called MCS Multiple Chemical Sensitivity – it is not yet recognized by the AMA, but it is very commonly associated or found to be secondary to both Fibromyalgia and CFS Chronic Fatigue Syndrome.
Basically, it is being more sensitive than ‘normal’ healthy people with good immune systems. Because I suffer from multiple auto immune diseases (4) I can see how I may be vulnerable to this.
I don’t want to go crazy with this and get rid of every household cleanser and chemical in our place – but I am going to try and be aware of the stuff I use from now on and any kind of bad reactions I get.
One thing for sure though, I’m going to stop washing my face with this stuff I got – Interestingly enough, I bought it just around the time I got my hair done…no more hair color either. If sure most people aren’t too interested in this stuff especially if you are healthy and don’t struggle with health issues like this, but for those of you who may be interested, I copied and pasted some info on it below…
Overlapping Disorders:
Chronic Fatigue Syndrome, Fibromyalgia Syndrome
Multiple Chemical Sensitivity & Gulf War Syndrome
by Albert Donnay, MHS, Executive Director, MCS Referral & Resources
Based on testimony submitted to the CDC??s Chronic Fatigue Syndrome Coordinating Comm., 29 May 1997
Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Fibromyalgia Syndrome (FMS), Multiple Chemical Sensitivity (MCS), and Gulf War Syndrome (GWS) share many of the same symptoms, as described below, and often occur together, but they differ greatly in the methods used for their diagnosis and treatment. Which of these diagnoses a person receives usually depends on the type of specialist he or she sees. CFS is most likely to be diagnosed by internists or infectious disease specialists, FMS by rheumatologists, and MCS by occupational and environmental medicine physicians. Gulf War Syndrome is seen mostly by military and VA physicians but–even though the top 10 symptoms they report are all common to CFS, FMS and MCS–they call them “unexplained” and refuse to even screen for any of these disorders.
CFS is defined by the US Centers for Disease Control “for research purposes” as persistent or relapsing fatigue lasting greater than six months that is unexplained by any other physical disorder. This fatigue also must occur in combination with at least four of the following: 1) short term memory loss, 2) sore throat, 3) tender lymph nodes in neck or armpit, 4) muscle pain, 5) joint pain without swelling or redness, 6) headaches, 7) unrefreshing sleep, or 
“malaise” that lasts more than 24 hours after exercise. CFS may develop at any age but usually starts in mid-life, often in conjunction with a flu-like illness, and is diagnosed more frequently in women. Numerous biochemical abnormalities have been identified in CFS patients but none as yet are considered diagnostic. Many treatments are available, mostly for specific symptoms or deficiencies, but outcomes vary and no cure is known. Avoiding stressors of all kinds is primary.
FMS is defined by chronic muscle and joint pain on both sides of the body, pain above and below the waist, and pain anywhere along the spine. It is usually associated with disrupted sleep, chronic fatigue, cognitive problems, and many other variable symptoms. According to the American College of Rheumatology, FMS affects about 3% of the adult U.S. population and, like CFS and MCS, is much more common in women. The diagnosis is confirmed with a brief physical exam that involves the testing of 18 pressure (or tender) points. As with CFS and MCS, the onset of FMS may be gradual or sudden. Sudden onset is usually associated with physical injury or trauma, such as a car accident or difficult childbirth, although FMS also may be initiated by infections or chemical and drug exposures. Treatments focus on relieving pain, avoiding stress, improving sleep and correcting hormonal imbalances. Outcomes vary and no cure-all is known.
MCS, like CFS, is diagnosed by the patient’s history and the consideration of other possible chemical sensitivity disorders like lupus and porphyria. It is defined by multiple symptoms affecting multiple organs (such as the nose, eyes, lungs, and central nervous system) that wax and wane in response to multiple chemical exposures at or below previously tolerated levels. MCS usually starts from a chronic (long lasting) or acute (short but high level) exposure to one or more “sensitizing” toxins such as formaldehyde, the pesticide Dursban, and carbonless copy paper. This initial sensitivity then spreads, with many other low-level exposures triggering similar symptoms. These triggers may be inhaled (like perfume), ingested (like food, alcohol and drugs), or absorbed by the skin (like detergent residues and pesticides). A random survey of 4,000 adults in California by the state??s Department of Health Services in 1995–funded by the US Agency for Toxic Substances and Disease Registry–found 15.9% complained of being “unusually sensitive” to “everyday chemicals” in common household products and 6.3% said they??d been given the diagnosis of MCS or Environmental Illness by a doctor. Similar percentages were found again in 1996 when the same questions were asked of 4,000 others. Treatment focuses on avoiding and controlling the exposures that trigger symptoms, combined with exercise and sauna as tolerated, and nutritional supplements to address common vitamin and mineral deficiencies.
CFS, FMS and MCS occur together in approximately 1/3 to 2/3 of all cases, according to the first study of this overlap done in 1994. The MCS overlap was perfectly symmetrical, with up to 67% of both CFS and FMS patients reporting a worsening of symptoms following exposure to air pollution, cigarette smoke, solvent fumes or perfumes. The FMS overlap also appears symmetrical, with 67% of both MCS and CFS patients reporting muscle weakness and 63% to 77% complaining of muscle and joint pain. And despite using an older (1988) and narrower definition of CFS, the study found CFS in 70% of FMS and 30% of MCS patients. Using the broader 1994 criteria for CFS, the overlap is much greater: a study of 100 new MCS patients found 88% also had CFS, 49% had FMS and 47% had all three! These extensive overlaps highlight the need to screen patients for all three disorders whenever any one is suspected.
More research is needed to see if Gulf War veterans and civilians who meet the criteria for more than one of CFS, FMS and/or MCS are suffering from separate disorders or just variations of one underlying but as yet defined common syndrome. All three seem to share reduced tolerance for a diverse range of physical, biological, chemical and mental stressors. In addition to chemical sensitivity, many also report heightened sensitivity to bright lights, loud noises, spicy foods, and physical touch, vibration and/or pain. Given how little is yet known about these overlaps, however, most physicians, insurers, attorneys and support groups continue to regard CFS, FMS, MCS and GWS as separate conditions.
It is very important that anyone suspected of having any one of these overlapping syndromes be screened for all of the others as well as for other possible underlying complications and causes of their symptoms such as inherited mast cell or porphyrin disorders. Failure to do a thorough differential diagnosis may have serious consequences, as health care providers may overlook potentially treatable conditions that present with similar symptoms or recommend inappropriate treatments. Since drug sensitivities are common in all these disorders, for example, physicians who prescribe medications for CFS/FMS/MCS patients are advised to start at way below the normal dose and increase slowly only if it is well tolerated. Thorough documentation of all signs, symptoms and diagnoses also is critical for patients seeking workplace accommodation or workers’ compensation, Social Security and other disability benefits, or insurance coverage.
From Wikipedia:
Symptoms of MCS
Doctor Ronald E. Gots describes MCS as “a label given to people who do not feel well for a variety of reasons and who share the common belief that chemical sensitivities are to blame. … It has no consistent characteristics, no uniform cause, no objective or measurable features. It exists because a patient believes it does and a doctor validates that belief.”[19]
A partial list of possible symptoms include anaphylactic shock, difficulty breathing, chest pains and asthma, skin irritation, contact dermatitis, and hives or other forms of skin rash, headaches, “brain fog” (short term memory loss, cognitive dysfunction, including attention deficit), neurological symptoms (nerve pain, paralysis, weakness, trembling, restless leg syndrome, etc), tendonitis, seizures, visual disturbances (blurring, halo effect, inability to focus), extreme anxiety, panic and/or anger, suppression of immune system, digestive difficulties, nausea, indigestion/heartburn, vomiting, diarrhea, food intolerances, which may or may not be clinically identifiable (e.g., lactose intolerance, celiac disease): commonly wheat and dairy, joint and muscle pains, extreme fatigue, lethargy and lassitude, vertigo/dizziness, abnormally acute sense of smell (which may simply be the result of ridding one’s home of strong masking scents, therefore purging olfactory neurons), sensitivity to natural plant fragrance, pine turpines, insomnia, dry mouth, dry eyes, and an overactive bladder.[20][6]
Possible triggers
Multiple chemicals are reported to trigger MCS symptoms.[7]
bleach, fabric softeners, wool-wash, and detergents
household and industrial cleaning chemicals
perfumes, lotion, scented personal care products
air-fresheners and plug ins
anything scented or perfumed
petrol or gasoline, diesel and exhaust fumes
pesticides, herbicides, fertilizers, and other agricultural chemicals
shampoos, hairsprays and personal care products
dishwashing liquid and detergent (may cause migraine headaches for those without MCS)
most glues (including carpet glue), varnishes, polishes, paints, solvents and paint-thinners
petroleum-based products (including petroleum jelly)
Formaldehyde and aldehyde
Tartrazine (a.k.a Yellow #5 or FD&C E102), and other Azo dyes
Caffeine
any volatile organic compound (VOC’s).
A list of commonly encountered chemicals which precipitate symptoms of MCS. [14]
Aerosol air freshener
Aerosol deodorant
After-shave lotion
Asphalt pavement
Cigar smoke
Cigarette smoke
Colognes, perfumes
Diesel exhaust
Diesel fuel
Dry-cleaning fluid
Floor cleaner
Furniture polish
Garage fumes
Gasoline exhaust
Hair spray
Insect repellent
Insecticide spray
Laundry detergent
Marking pens
Nail polish
Nail polish remover
Oil-based paint
Paint thinner
Perfumes in cosmetics
Public restroom deodorizers
Shampoo
Tar fumes from roof or road
Tile cleaners
Varnish, shellac, lacquer
Any chemicals which off-gas(regardless of odor) and Solvents are reported by patients to triger symptoms. The associated illness is popularly known as painters’ syndrome which affects professional painters. Many countries have banned thinner-based paints and replaced them with water-based paints. Non VOC, healthier paints may be obtained. Enclosed, air-conditioned buildings with a recycled air supply such as shopping centers or large office buildings are generally considered bad environments for the chemically-sensitive.[1]. Some find it helpful to avoid certain types of fabrics, hang printed paper outside off gas before reading, purchase only untreated wooden furniture, and eat only organic food.[2] Some avoid contact with the outside world all together in favor of a controlled environment which limits exposure to offending chemicals that otherwise cannot be avoided. [7]
June 5th, 2007 at 8:58 pm
What you need to know before visiting a person who has MCS
I can’t wait to get together, it has been so long since we last sat and chatted over a cup of tea. Life sure has changed in many ways since we last visited with each other, hasn’t it?
For me, interacting with other people is one of the hardest and most stressful things for me to deal with these days while having a difficult to control illness. Even well meaning people can cause me to have what may have started out as a “good day” into a life threatening medical nightmare or disaster.
Jeesh… when I think about it, I have to run as fast as I can to stay in place on most days. As if living with such a difficult health situation is not bad enough, it is often equally difficult for me to ask others not to make me ill in my own home by using various chemicals/products that seem completely harmless (to them). This causes an entire other set of issues due to isolation, alienation, resentment and even friends & family avoiding me because being in my company or visiting me is simply not “convenient” for my would be guest.
If you are planning to visit me at my home for a few minutes, hours, or for and extended over night stay, here are some basics, which may help make our visit enjoyable and lessen the chances of my becoming too ill to enjoy our visit as well as lessening your chances of feeling hurt, bad or embarrassed
for contributing to my illness.
After all, breathing is a necessity, chemicals and fragrances on ones body, hair and clothing are not. Hence, my health and ability to breathe in the company of another person is NOT negotiable.
The truth of the matter is I have never really been in the company of another person who made me sickĶ it was the chemicals they had on their body, hair and clothes that has gotten my health to the compromised point in which it is today.
There are not any products that I am not neurologically reactive to. It is just a matter as to how reactive or sensitive to them I am and how ill a specific product will make me.
So, please leave them all at home.
Those “all natural” fragranced products are not safe around me either. While some products are worse than others, all WILL make me sick to some degree, probably too sick for you to even come into my home or to enjoy your company.
These are just some basics, but better to ask me than to assume.
Personal hygiene Simple rules-of-thumb: If the word perfume or scented (natural or otherwise) is on the label of your product, don’t use it before you come to visit me at my home Ķ Yes, even your breath mints, gum and mint toothpaste smells could knock me for a loop as would bug sprays and “body sprays.”
Things you probably cannot smell affect me and make me pretty sick; after all, it’s the chemicals not the odors that make me sick, so, just ask if you’re in doubt.
Cosmetics have exemptions from labeling laws, they are literally allowed to state they are fragrance free, when they in fact do have fragrances in them referred and often labeled as “masking fragrance” which is used to cover up the smell of the product itself. Obviously, chemicals are chemicals and fragrance is fragrance, if it’s in there it will make me very ill.
Shampoo:
All brands you can buy in a supermarket have fragrances in it, even baby shampoo. Please do not “drop in” after you have just come from the salon or you have just shampooed or colored your hair. This will make me sick.
If you will be staying over night at our house, I will supply the guest bathroom with “safe” products (ones that do not make me ill) for you to use while visiting, including: toothpaste, shampoo, conditioner, lotion, soap etc.
Please DO NOT bring any of your own personal products
into my house.
Soap is like shampoo.
The worse offenders to me are Dial Soap and ALL other “deodorant/scented” soaps. Safer alternatives are easily available like Neutrogena Fragrance Free soap or Basis soap. Again, ask me and I will help you out here.
Keep in mind that the soap you may wash your hands with in a public rest room or in an airplane before you get to my house will make me sick because chances are good that this soap will contain a perfume /fragrance.
Currently the ONLY soap that is safe around me is Neutrogena Fragrance Free Facial soap which we also use as a GREAT shampoo bar and Kiss My Face Fragrance Free Pure Olive Oil bar.
Deodorant:
Most all deodorants have fragrances or “masking fragrances” and other harmful chemicals in them. A good alternative is the crystal sticks, or any of the chemical free varieties. Try Arrid UNSCENTED or ask me which deodorant would be ok for you to use while you are visiting me at my home.
Hand cream & Lotions:
There does not seem to be any safe hand creams for people chemically sensitive. Best to leave yours at home. I have some nice “safe” lotion bars that are great even for your face. Perfumes, fragrances, colognes, lotions, after shave, hair care products, nail polish and/or remover etcĶ
I’ve Just got to say NO!
Lotions, hair gel, hair spray… Amazing how much stuff people pour on their body, hair and laundry every day, isn’t it? Please do without these products around me, in our home or when visiting.
ClothingĶ What to avoid: DO NOT WEAR — Any/all clothes washed in any scented (natural or synthetic) detergents or bleach, this will make me sick. So will clothing that has ÄúFabreezeÄù OR ÄúBounceÄù on them.
DO NOT HAVE ON — Freshly polished nails (same day)Ķ the same goes for “just” colored or permed hair.
Hands which were washed with a bar or liquid soap, which has fragrance or germicide in it will make me really sick.
New clothes Äì new fabrics are treated with formaldehyde and formaldehyde makes me terribly sick. DO NOT WEAR — Dry-cleaned clothes DO NOT WEAR — Moth balled clothes DO NOT WEAR — ANY Clothes which have EVER been previously washed or dried with fabric softener / dryer sheets of any kindĶ
This is the worse for me and will make me very sick.
Bears repeating:
DO NOT WEAR — ANY Clothes which have EVER been previously washed or dried with fabric softener / dryer sheets of any kindĶ
This is the worse for me and will make me very sick.
Do not pack (if you will be staying overnight) or wear clothes that have been in the closet next to other clothes, which have “lingering” perfume/cologne/aftershave smells, fabric softener smells, deodorant smells or detergent smells.
Overnight guests Needless to say, I do not use any fragranced detergent, softeners or laundry/cleaning products. I wash clothes in borax and/ baking soda; it works well even for dirty work clothes. Chances are good if you are staying over for more than a couple of days, you will need to do a load of laundry. Any clothing previously washed and/or dried using products that contain fragrances cannot go into my machines or come into the house for that matter. Even if they were washed and dried last month, fabric softeners and dryer sheets leave a permanent lasting waxy film that sticks on your clothing and machine
FOREVER — this will make me very ill.
If you have any questions about any of thisĶ please ask
BEFORE you come to visit.
Save yourself from an uncomfortable and perhaps embarrasing situation.
When you keep “forgetting,” I get one of two messages:
Either you don’t believe I’m really sick or you don’t care.
I never get the message you just forgot.
PSĶ MCS is NOT an allergy or an “allergic” reaction to “smells” or Äúperfume-fobia.Äù It is a serious and very difficult to manage highly reactive neurological disorder triggered by chemicals (fragrances are chemicals) . I am obviously much more neurologically/chemically sensitive now than I probably was the last time we saw each other, but this doesn’t mean we can’t enjoy each others company and have some fun, it just means I need to be more careful to avoid triggering a negative reaction.
On a more personal note about MCS:
If I were to tell someone that I had Cancer or Multiple Sclerosis, that person I’m talking to can accept this in a detached and somewhat impersonal way. The issue usually does not personally challenge the other person. Now if I tell this person that perfumes, every day household chemicals, scented soaps and fabric softeners make me horribly sick to the point of disabling, since he/she most likely use one or more of these products regularly, the issue is immediately personal.
And if all of this seems too overwhelming to remember, then try this …
Pretend it’s happened to you and you are having to send this letter to your friends and family members..
June 5th, 2007 at 9:36 pm
Thank you so much for writing, Kathy! I hope you won’t mind that I added your link on my website – I’m glad to know that it’s NOT ‘all in my head’ – that other people are sensitive to chemicals too… I reflected back a few months ago where I sprayed some RAID because I saw a cockaroach – and it made me SO SICK all night. I was wheezing and coughing – my chest hurt and I was having a hard time breathing. My husband and our friend who’s house we were staying at told me I was just being drama queen – that a little RAID wouldn’t do that. I KNOW tat it was not in my head! I’ve never had that type of reaction before though. I mean, I was scared. Does MCS come on gradually and get worse? I hope it doesn’t get worse…
Thanks again…
December 18th, 2007 at 9:35 pm
I was searching for \’Skin Care Salon\’ at google and got this your post (\’Okay, I don’t think I’m crazy…\’) in search results. Not very relevant result, but still interesting to read
January 2nd, 2008 at 6:56 am
I know what you feel. I have been fighting constantly with my husband. His aerosol deo is making me violently sick. We ride to work together almost an hour ride, I have to stop on the way to work to get sick. I just keep a bucket in the car now. He thinks it is all in my head. It really hurts me. I feel like I can’t breath, I get terrible headache and sick to my stomach. It ruins my whole day. I am also always so tired, I never thought it was part of all this. I have not slept a entire night in so long, I can’t even remember when I did. I know that when I was single I always slept great.
When I was in grade school my grandma gave me some avon gardenia perfume. For months my brother and I used to get sick on the bus. The bus driver got so tired of cleaning it up that he made the two of us set on the steps of the bus. It was easier for him to clean it there. We finally quit getting sick when I ran out of that horrid stuff.
I will be so glad when this is a recognized illness and people will take it seriously.
I know it is these chemicals that is killing America. My older ancestors lived into their late 90′s and it was because the food they ate was chemical free and they didn’t have chemicals to put on their bodies either.
Thank you for posting this.
I hope some day America will be chemical free!
Ilene
January 2nd, 2008 at 6:19 pm
Hi Ilene,
I’m so sorry for your situation… especially that your husband doesn’t believe you. That must be so difficult. My husband not only believes me and is supportive but also warns me of certain things I sometimes forget or just don’t think before I act…like eating stuff with sugar, or vaccuuming (it usually puts me in bed) so he does it himself, or reminds me not to use certain things because I may get sick.
You should (if he’s willing) have your husband read some articles about Multiple Chemical Sensitivity or CFS – have you been diagnosed for either? If you can, see a doctor who specializes (or at least believes that this is a real condition) and then let your husband hear what the doctor says. I’m sure like you really want to throw up every day – does he think that you induce vomiting on purpose?
I’m so sensitive to all kinds of chemicals – but maybe not as much as other people – I think that the more healthy, ‘non-toxic’ food (vegan, raw, organic) the more senstive I am. It’s kind of a ‘catch 22′ – over the holidays I’ve eaten a lot of junk and stuff I shouldn’t – and it seems like my body almost has more of a ‘tolerance’ for the ‘toxic’ stuff. Crazy.
Anyway, over the years, my health has gotten worse and worse – although it has improved a great deal since I’ve changed my diet. (Except for the holidays lol) Hopefully, I won’t suffer the consquences in the next few days – I’m leaving for Bangkok Sunday and I don’t need to be getting sick!!!
Hope you have a great New Year and I will pray that you can find a compassionate doctor who knows about your condition.
God bless you!