It seems as if you can find a message board for almost any ailment, but MCS. I have had MCS for 17 years now and while I also have Fibro, etc., it is the MCS that makes my life the most difficult. Unfortunately, the only thing one can do is to avoid whatever it is that you react to. It also spreads...things you could tolerate at one time, you no longer can. It makes you become somewhat to very isolated. It is a strange ailment; not well understood by those who do not have it. In fact, many "experts" say that MCS does not exist. We are having panic attacks is one common theory. Of course, we know all too well MCS exists. After all, MS patients were told it was all in their heads also until "experts" developed the correct test for it. So I hope this board can become one of support for each other as we try to live and cope in this modern chemical-filled world.

Hugs,
Teaspice

Hi Teaspice (I like your name, as I'm sitting here with a delicious cup of decaf Chai tea!).

The panic attack theory cracks me up. If these "experts" don't know, they should say so, and not speculate. I don't have MCS as bad as some people, but certain things set me off. I remember when BJ's warehouse store kept the new tires stacked in the back of the store and the smell of the rubber (or whatever it was) would make me so sick. I'd be fine going into the store, til I got near the back. At that point, I couldn't finish shopping, my head would hurt so bad it was almost blinding. I'd give the cart to my husband, and literally stumble out to the car.

If this was a panic attack, why was it so place specific (only at the BACK of BJ's)? I was fine at Costco, where they kept the tires in another building. Needless to say, we kept the Costco membership and dropped BJ's.

Your comment about spreading (or progressing) has been true for me too. I recently realized the reason I felt so sick after eating breakfast was the fact that I'd read the paper while eating. Whenever we went on vacation, I noticed that I didn't feel sick after breakfast, so I tried to figure out why.

The only difference I could think of was the newspaper, so I experimented by not reading it for a week or so, then going back to reading it, then stopping again...and sure enough that was it! I'd read the daily paper for years and never had the problem till the last year or two. I have to be careful with magazines too. The fresher the ink, the worse the reaction it seems.

We have to be our own detectives and our own protectors in this matter!

vickiw

It is so nice to meet you. Ink is a big trigger for MCS. That is why you will find that some MCS books are printed with soy ink. I do not know if this works, but I knew of a lady in Chicago that had the same problem with her newspaper. She said her husband would put the newspaper in the clothes dryer for awhile every morning and then she was able to read the paper. We learn to do "strange" things to cope. How they hit on this I do not know. There is a big MCS group in Chicago called "The Canaries." They put out a newsletter and also meet in person, with strict rules as to what products one can use. I do not know if it is still going, but I imagine they are. I hope this works, if you try it. Please let us know.

Hugs, Teaspice

[This Message was Edited on 11/19/2008]

Hi:

Thanks for sharing about the MCS and panic attacks. I just realized something, I have gotten the panic attacks several times within the last 30 days which would only happen when I would get up in the AM and go to use the bathroom. My husband would've already showered (and he doesn't do this every single morning only when he has his aches and pains from the OA) and I would have to breathe in the 'scents'. Then I would have to go outside to 'clear' my head in order to calm down my PAs.

I have also been having problems in other areas where my Copper levels were higher than I want to be, raising the levels of the T3 in relation to my Grave's Disease. I think everything plays a role in our bodies. I have Rheumatoid Arthritis as well as having had Adrenal Fatigue on and off in the past. I also suspect imbalance problems with the Progesterone and Estrogen levels (which have an affect to the Copper levels) since I am in my periomenopause stage.

Take care... :-)

I love it! I wonder how they thought of that. Unfortunately we canceled our subscription this week, so maybe I'll try it on magazines instead. It seems they'd get messed up, esp. newspapers. But if it's that or not read, I'll try it. I'm basically housebound with CFS and it gets boring enough without having to give up one of the few things I can do. I get tired of TV and too much time on the PC makes me tired, so reading was a good alternative till I found out it was causing some of my symptoms.

As you are no stranger to this horrible condition, I guess you have over the years compiled a 'safe' list of things you can tolerate? I am having a really hard time finding a facial cleanser amd moisturiser that don't make me feel like I'm gonna be sick or give me raw skin, sore sinuses, headaches, racing heart - all the things I'm sure you're familiar with!
Can I ask you what you use to wash and moisturise your face without a reaction? I, at the moment, have one cleanser and moisturiser I can use but both companies reformulated! I have a little each left but the race is on to find replacements! As I have very dry, sensitive facial skin a nice cleanser and moisturiser is a must...I can't just rinse with water, for example as my face just gets raw and then I get a headache...This is so stressful to me as other skin cleansers/ moisturisers flare up my MCS symptoms and, of course, you've gotta clean your face!
I also have blepharitis affecting my eyes and the cleanser I have a little of (well, it's really a lotion eye makeup remover) is what I use for that now cleansing my eyes and when I run out I don't know what I'll use as eye hygiene is important in managing my condition!
I would love to know what you use? :)
Have you found anything has helped to slow down the MCS? Has diet or have any supplements helped? You are right when you say this is an isolating condition. I used to be able to tolerate a mineral makeup but can't now - this enabled me to go out without upsetting my sensitive skin so I've hardly been out at all over the past four months!!
I'm hoping the MCS board will grow!!
Welcome, anyhow - I'm glad you found us!!!! Hugs, Shelbo

Hello to all,
yes, I have some products I use. An old neighbor stopped by our house with aftershave on and I am detoxing. He lives in Dallas or else I would not have let him in. So as soon as I can, I will write down what I know/use.
Thanks to all for your nice posts. This will be good for us as I am sure we are all limited as far as doing activities outside the home. We need a support system we can easily access. I hope to be better by tomorrow.
Hugs to all,
Teaspice

know what you can tolerate - but only when you feel well enough! I am so sorry you are feeling so bad...I really do hope you feel better soon! Love and hugs, Shelbo

Similar name LOL :D

MCS is definitely real. I haven't been able to take being around chemicals since I got sick. When I first got sick, I couldn't walk down a store isle that had the detergents and stuff. I'd get dizzy and like I was going to collapse.

I don't really know what the fumes do to us, but I do know this is far from panic attacks. I get headaches, my eyes burn, it makes my fatigue worse. I think it's part of the sensory overload, but I also think the actual fumes these things give off are damaging us.

This is fabulous! Inever knew there was a name for what I have experienced...let alone anyone else who experiences it!! Foam toppers?? NO WAY!!!! I had to get it out of the house!!! New carpet in my classroom??? I've been the sickest since the installation of that carpet of any year since I have taught!!! And I live in a STEW of pesticides and toxins in Tulare County, California as we grow cotton, nuts, citrus, grapes, everything!! I thought living here 22 years would make me more immune to the gunk....apparently not. CFIDS has arrived but I can't afford to retire just yet...yet...I think my environment is making me sicker. C4a and C3a levels are high, which means I am constantly fighting something...and occasionally everything overflows and I can't get out of bed. Sheesh!!! So sorry so many of us are here trying to get along in all of this. Thanks for all the information.
Body soap...I found one at the drug store...can't think of the name...I'll enter the info when I get home from vacation...my mother-in-law's home is over 100 years old...you can imagine what it is like here!!!! She, bless her heart, is 86 and can't smell anything, the mold is everywhere and I am just trying to stay sane as well as supportive and pleasant. Episcleritis has set in and I didn't bring my eye steriods.

Sorry for whining....but I will get the name of my soap posted here when I get home.

Cheryl