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Adrienne Dellwo

Multiple Chemical Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome

By August 8, 2013

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Do chemicals bother you? What about hygiene products, or the laundry-products aisle at the grocery store? If more than one type of chemical gives you negative symptoms, you may have a condition called multiple chemical sensitivity (MCS.) It's common in people with fibromyalgia and chronic fatigue syndrome.

I have what I consider to be a mild case of MCS. The laundry-products aisle guarantees an instant headache, and possibly nausea and dizziness to boot. I make sure to stay inside when my husband puts chemicals on the lawn, because those'll get me, too. A lot of us have this kind of reaction, and for some it's severe - as in debilitating symptoms from small amounts of exposure.

To learn more about MCS and how it interacts with our other conditions, see:

MCS is not a psychological condition. However, a fair amount of research shows that it frequently overlaps with some of them. For more information on the comorbidity, read:

Do you have or suspect you have MCS? What things bother you? How have you changed your life because of it? Leave your comments below!

Learn more or join the conversation!

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Comments
August 8, 2013 at 3:53 am
(1) Kathy Roberts says:

I was diagnosed with Fibromyalgia 71/2 years ago and many aspects of my life have changed. MCS has been one of those major changes in my life and surroundings. I no longer use any scented products at all because of the side effects. The side effects included headaches, dizziness, nausea, gaging, choking, non-stop sneezing, rashes and worst of all Asthma attacks. We had to go through the house to remove scented candles, scented soaps, personal care items, perfumes, air-fresheners, laundry soap, dryer sheets, cleaning products and more. I miss my perfume & makeup but I have avoid these or pay the consequences. Strong food smells can cause the same issues. I suffered the same MCS issues while pregnant but they were not as intense.

August 8, 2013 at 11:07 am
(2) Rachael says:

One of my greatest fears as I get older is not being in control of and monitoring my own case of ME/CFS. I have MCS to prescriptions meds and even if I can tolerate one, it is in a much smaller dose than the average person. have learned how to suppress my own immune system through trial and error; a combination of supplements, antihistamines etc, which has led to a great improvement in my ME/CFS. I haven’t been to doctor in over ten years; gave up on them out of sheer frustratjon because of a lack of understanding of my condition.

I fear that some day because of injury, illness, or old age, some ‘know-it-all” medical professional will start pumping large doses of this, or that prescription medication into me treating me like one of the masses, and not an individual with an autoimmune illness. I fear being treated like the majority of people that can take a dozen different “pharma” drugs at once with no adverse effects. For me to do so would lead to unbearable activation of my immune system. My ME/CFS symptoms would become unendurable.

August 8, 2013 at 12:12 pm
(3) MCS-Aware says:

There is a support group for people affected by multiple chemical sensitivity (MCS) and a free newsletter at http://www.MCS-Aware.org.

August 8, 2013 at 12:30 pm
(4) UndyingBlessings says:

This webpage shows that MCS, EI, environmental illnesses, are real. Of course the pain and suffering caused by them can cause emotional stress and even psychological problems, just like surviving traumatic accidents, for example.

One does not heal broken limbs by popping anti-depressants, etc.

Lessening the real causes of physical effects will heal emotional effects.

The webpage linked to herewith has an account of the effects of natural and toxic environments had on someone’s health.

Pay attention to keep or get healthy.

August 8, 2013 at 1:05 pm
(5) UndyingBlessings says:

Amendment of the missing link for my comments above.

August 8, 2013 at 3:56 pm
(6) Mario says:

I suffer from very severe mcs and can no longer tolerate living indoors anywhere, I have to live outside, I can’t even tolerate a tent. This illness isn’t recognized here in the US however it is still covered under the ADA & Social security as a disability I know several people who receive disability for it. Germany & Japan recognize mcs & provide medical treatment & housing as the US should. The pharmaceutical industry controls the AMA and they are preventing mcs from being recognized or treated because it is their liability.

August 8, 2013 at 7:37 pm
(7) UndyingBlessings says:

The web page linked to herewith is an account of the different effects that natural and toxic environments had on someone’s health.

For some reason the link that I included in my two previous posts did not get displayed.

Here it is another try:

http://www.herobooks.com/present/present.htm

August 9, 2013 at 1:46 pm
(8) Nancy A. says:

I have CFS, fibromyalgia and asthma. I try to buy fragrance-free products if possible. Otherwise, it’s really difficult to avoid chemicals in general. I also have multiple environmental allergies.

I lead a very solitary life, mainly because people just don’t understand my illness. They just couldn’t possibly understand what people with CFS and fibromyalgia have to deal with every day of our lives. We have a Fibromyalgia Awareness Day each year (May 12th) but we have a long way to go before the general public truly understands our plight.

August 9, 2013 at 3:56 pm
(9) christine says:

Leading an isolated life is not the answer. I have suffered from the various symptoms linked to an auto-immune illness for almost 50 years. I’m still undiagnosed because my symptoms don’t fit the current popular catagories.

I’m very thankful I’ve been able to lead a psuedo-normal life. I’ve been a wife and mother all my adult life. I’m happily married to my third husband (23 yrs). I’ve spent most of my life hiding the facts of my illness because people didn’t believe it existed.

I’ve been very fortunate to have had a few real friends and supportive parents and siblings.

Adrienne’s column has been a bright light for me. God bless her, she’s using her talents to make all our lives better. Her work makes us realize we are not alone.

Perhaps my grandchildren will find acceptance.

August 9, 2013 at 5:05 pm
(10) Sharon Pavnica says:

I have had to give up my favorite perfumes. Any kind of perfume gives me an instant headache and nausea. I am also sensitive to cosmetics, hair products, laundry products, candles. Almost anything with a scent affects me negatively. My husband also has an extreme sensitivity to all kind of products, so he understands what I go through.

WE ARE VERY CAREFUL ABOUY ANY KIND OF PRODUCTS WE BRING INTO OUR HOME.

I spend a.lot of time and energy trying to find unscented cosmetics. There are products that claim to be scent free, but their claims are false. When I am looking for shampoo and other hair products in a store, I take the tops or lids off of bottles and other containers and smell them.

Adrienne: would it be be possible for those of us with MCS to send in the names of products that we have found tolerable and then have them listed in an article? I hesitate to suggest something that will mean more work for you, but it would be great to know if people have found products that some of us aren’t aware of.

August 9, 2013 at 7:14 pm
(11) Juli says:

My MCS comes out mainly as skin sensitivities. I have to use dye and fragrance-free detergents. Fortunately for my hands, my husband does dishes. For years, I suffered from unexplained rashes and chemical burns on ultra-sensitive portions of my skin. Then certain detergents came out with “free and clear” versions for “sensitive skin”. I tried one of them and never went back to the one I had used for years. My rashes and chemical burns cleared up and the only problem I have had since has been a yeast problem caused by radiation treatment for cancer.

I do get headaches from artificial fragrances so I avoid the cleaning agent aisle in the stores. I stay away from insecticides and herbicides because I have problems with them as well.

All of my skincare has to be hypoallergenic or formulated for sensitive skin. One of the best ways I have found to avoid problems with perspiration is a mixture of 90% cornstarch and 10% baking soda applied with a powder puff or a fluffy make-up brush. the mix has no fragrance and it absorbs the moisture–it works in shoes as well.

August 9, 2013 at 8:41 pm
(12) Mary says:

I have struggled with CFS/FM since the mid ’80s. Over the years I have experienced every symptom imaginable including MCS. I had read and seen reports about people with this illness, but had no idea just how disruptive it could be until I became a sufferer. I stopped attending church regularly because of the heavy perfume odors. Avoidance of offending odors and chemicals has resulted in my almost becoming a recluse. By avoiding offending substances for years, I have improved somewhat but realize that I have to be careful or the migraines and overwhelming fatigue reappear, I am also sensitive to many foods and also react to foods laden with pesticides and artificial preservatives etc., so my diet has to be clean and free of these offenders. When I travel I use masks to filter offending agents like fuel and gasoline exhaust. What is disheartening is that like CFS/FM, there is no cure for MCS, Living with these chronic illnesses is living with a disability. Unfortunately, as many of you know, too many people still doubt that these are real health issues, which only adds to the frustration and the challenges.

Before her retirement I was able to work with Dr. Sherry Rogers, environmental medicine physician, and I think she may have saved my life. I highly recommend her book, Tired or Toxic, and also a small pamphlet that she wrote titled, Chemical Sensitivity.

August 9, 2013 at 9:14 pm
(13) Wendy says:

So glad you had this question this week went and how changes affect you! Well I got one for you. He called a couple of months ago and asked how our schedule was because of appointments as so for, so I found last Sunday was perfect. I called my sister early that night, she was a mess, I asked her why. our Dad just announded that she, her husband, and my niece to DISNEYLAND!!!!!!
We saw my father and his girlfriiend, who don’t get to see of then and they surprised us with a very generous check!!!! When I say generous, I get on a trip to Las Vegas or Florida today general! On Sunday, I had refilled must of most of my meds and took them generous!!!, before I went it. No WAY was I going to wig out in public

August 9, 2013 at 9:25 pm
(14) Wendy says:

ETC>>>I called my sister immediately she couldn’t believe it either. No, they aren’t going Disneyland but Sesme Place! Of course, its only fair that we don’t mention amounts.
Since the stress of the getting the money, knowing I would get the money and the changes I in phippin’ weather. Hubby and I have had some spats lately, not sure why. We get up a 2 day get away to to the favorite hotel we were married at in September!

August 10, 2013 at 2:44 am
(15) Dawn says:

It’s very interesting I had no idea this problem existed !!! I’m a bit different to others as my problem smells are food related ?? I’ve never like spicey foods but the longer I’ve had fibromyalgia the worse I am !!! My husband had to cook curries when I’m in bed and even then the smell wakes me and I feel so sick !!! This is getting so bad that even more food smell are making me ill !!! I was feeling as if I’m going mad but reading that others feel the same even if its different smell it makes me feel less crazy !!!!!!!!
Do any others suffer the same as me ? I’d love to know its not just me

August 10, 2013 at 10:24 am
(16) dana says:

My biggest fear is someone wearing perfume on a plane. I get unending migraines from perfume. Church is also a big problem with all the older women who’ve lost their sense of smell.

August 10, 2013 at 3:17 pm
(17) Doreen says:

My MCS started several years ago (before my FM was diagnosed 11 years ago and my CFS was diagnosed one year ago) when I sprayed some Raid to get rid of ants. Within seconds, I was vomiting and felt awful. After that, I was sensitive to latex and anything made from rubber. Walking anywhere near brand new tires makes my throat close up and gives me a headache. Now, I’m sensitive to any kind of plastics touching my skin and scented products make me nauseous and give me a headache. Unfortunately, where I work there is no policy about scented products and I work with a person that bathes in perfume every morning. Thankfully, she’s not in the office every day or I’d have to request that she stop wearing the perfume or I’d have to be moved elsewhere.

Americans in general are overly obsessed with scented products. Even natural products are overly scented. I cannot tolerate lavender scent, yet my favorite all natural company insists on putting lavender essential oil in their only body wash. I’ve asked why it’s not unscented and not surprisingly she said that most people like scented products.

Like many others, I have to hold my breath and run through cleaning product aisles or avoid them completely. I can’t tolerate air fresheners or scented candles and, unfortunately, I live with my elderly mother who loves that stuff. I’ve asked repeatedly that she not use them but she ignores me completely. I have to just shut my door and stay as far away from them as possible.

August 10, 2013 at 5:46 pm
(18) C says:

Yes, I have allergies and sensitivities. The worst being smoke especially from cigarettes etc. Some can cause instant migraines, nausea, dizziness. Not good. I also have sensitivities to medications which can be pretty bad and to certain smells. Flower type smells of perfume can be pretty bad. Lavender is horrible but I can use things that smell fruity and like cinnamon. The smoke and medication does / has created the most bother… a real huge issue especially since the building I’m living in doesn’t enforce the smoking bi-laws.

August 12, 2013 at 6:59 am
(19) omayra says:

Thanks!!! Do you have the information available in Spanish?

August 13, 2013 at 3:38 pm
(20) Allen says:

Never knew that my chemical sensitivity could be related to my fibro. Thanks for this article. As others have said lavender is a big trigger. I have to watch soaps, perfumes, detergents, cleaning products. Can only use dove soap, free and clear detergents, and have to watch what shampoo I buy. The chemical aisle is definitely not my favorite aisle try not to stay there long. I get headaches, runny nose, nausea and some things cause a rash. Depending on how bad my fibro symptoms are that day it may also make my pain and fatigue worse to. Sounds weird I know that something like could make my fibro worse but it does.

August 17, 2013 at 5:26 pm
(21) Helle says:

Transient Receptor Potential in Multiple Chemical Sensitivity
http://followmeindenmark.blogspot.dk/2013/02/transient-receptor-potential-in.html

Project Leader Gerry Oxford has this project:
ROLE OF TRP CHANNELS IN ENVIRONMENTAL IRRITANT-INDUCED HEADACHE DESCRIPTION

“Increased exposure to chemical irritants in the air we breathe may be responsible for the increased incidence of migraine as well as more recently described disorders such as Sick building syndrome (SBS) and Multiple Chemical Sensitivity (MCS).”

“It has been demonstrated that a member of the transient receptor potential (TRP) superfamily of ligand-gated ion channels, TRPA1, is activated by a novel mechanism involving covalent interaction between many chemicals and the receptor-channel leading to excitation of sensory neurons expressing TRPA1 and elevations in intracellular calcium.In this proposal, we will examine a specific hypothesis linking inhaled chemical irritants to the induction of headache symptoms. We propose that chemical activation of TRPA1 homomers, or TRPA1/TRPV1 heteromers on trigeminal neurons innervating the meninges results in release of calcitonin gene-related peptide (CGRP), a potent vasodilator implicated in migraine. The resultant vasodilatation provokes headache symptoms.”

November 26, 2013 at 10:18 am
(22) Konstantina Ferendinou says:

I have been diagnosed as having Chronic Fatigue Syndrome but I am also intolerant to chemicals eg many outlets sell meat and fish that is supposed to be fresh but it contains chemicals because it is stale and chemicals are used to mask the signs of decay or to prolong the self life.It took me years to figure that out(and o lot of suffering).I did my own research I had to start with textbooks since I don”‘t have a background in science.I came to the conclusion that the origin of my condition might be undiagnosed liver disease because of the symptoms but also because the liver is predominantly the organ where chemicals are detoxifyed.I find it very frustrating that there is no interest in doing research to check if those who are intolerant to chemicals break them down at a slower pace than healthy individuals and the longer presence of chemicals in the body and the detoxification in other organs even in the brain might be what causes the symptoms.If someone has any idea as to who I should contact,who might be interested in doing research or financing research or lobbying for research please let me know.If someone would like more information eg references from medical journals or if you have any comments I would love to hear from you.

March 7, 2014 at 2:15 am
(23) Jeri says:

The project mentioned above does not look authentic.

May 21, 2014 at 12:37 pm
(24) A. Douglass says:

Hello I was recently given the diagnosis of Fibromyalgia a year ago, but have been dealing with it for 8yrs now.. I have not been diagnosed with MCS, but I have noticed some disturbing symptoms lately. When I inhale the fumes from any cleaning products, I start to feel dizzy, my hearts starts pounding, my legs start burning all the way down to my toes, it’s like all of a sudden that feeling of extreme low blood sugar!! if I am exposed to long to it, I literal feel like I am having a seizure.. which I have experienced before because of medication, but never from this.. I’ts weird my muscles can start to spasm.. Not sure if that is just because the FM has made me more sensitive or if it is something more. It is kind of scary, unfortunately I have not found a Good enough Doctor yet..
Best of Luck to you All! :)

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