anyone with MCS (chemical sensitivities) from CFS/FM?

Discussion in 'Fibromyalgia Main Forum' started by helpeachother, Aug 24, 2004.

  1. helpeachother

    helpeachother New Member

    Does anyone else out there have the awful MCS (Multiple Chemical Sensitivities syndrome) AKA environmental sensitivities AKA The Gulf War Syndrome? I have it bad as a complication of my LD/CFS/FM etc and I keep thinking that either no one else here is unlucky enough to have gone this far with weakness and complications in this direction, or maybe no one gave it a second thought. It seems to be a "direct" (probably to nervous system) multi-organ (brain, heart, intestines, skin, swelling, chest, brain, stuttering, etc.) reaction to VERY SMALL AMOUNTS of "normal" "common" chemicals. Its sort of like an allergic reaction but it isn't and does not use the histimine reaction. The short list of neurotoxins includes perfumes, fragrences, gasoline, diesel fuel, any form of combustion like car exhaust, fireplace smoke, cigarettes, oil or gas heat in homes, fabric softeners especially the dreaded dryer sheet, glue, solvents, paints, etc. It will add to the other symptoms until you dont know what is causing what? Please Let me know, I have a few temporary symptomatic reliefs, but no cure, except avoidance until you get stronger and the body can take a bigger "toxic body burden" without showing off. Thanks and try to be cheery.
    [This Message was Edited on 08/24/2004]
  2. merrie

    merrie New Member

    My mcs is real bad.I can't even be on the computer very long at a time the smells coming from the computer makes me sick the side of my face starts to go numb and I start getting real bad brain fog. I have to limit my time in store to about 30 min.or I get sick. I would like to hear some of the things that make you better.
    take care,merrie
    [This Message was Edited on 08/25/2004]
  3. foxglove9922

    foxglove9922 New Member

    I too developed MCS since becoming ill with CFS,,,,,perfumes, air fresheners, cleaning products, etc are the worst for me. Debi
  4. wilyone41

    wilyone41 New Member

    I am new here, but not new to being ill. You can read my bio and see where I'm coming from. The docs have documented thru testing some serious problems. I do personally see that I have numerous symptoms related to CFS, but none of them has said a word about this.

    One of my biggest issues is related to MCS. When I am exposed to chemicals / things that irritate my airway at all, my reactive airway kicks in and I cannot breathe. I carry albuterol every where, along with an Epipen. I use asthma inhalers several times a day.

    Far & away the worst chermical I have encountered is anhydrous ammonia...just about does me in. I will be down & out for about weeks each time. Window cleaner with ammonia is a close second, as is many solvents, smokes, and related chemicals. My GI tract quits working when I have a reaction, and I have problems on my left side with tripping and falling as well...I lose a lot of sensation on the inside of my left leg & my left arm will shake.

    I get incredible pain on my back where I had shingles 15 years ago, and a tens unit is the only thing that helps, turned up all the way. My short term memory is shot, as is my concentration. I still cannot smell. I will go days w/o sleeping, but can't get out of bed. Some of my strength has returned, about half of what I lost. The GI Doc I have has kept me in one piece.

    So, for me avoiding these at all costs is the only way. It can be a struggle to not totally withdraw from life, and you cannot either. You might want to talk to your doc about an inhaler.
    Good Luck
  5. sandy10seven

    sandy10seven New Member

    Dr. Rogers has a book that has a tremendous amount of helpful info for dealing w/MCS, CFS and fibro. She has a practice in Syracuse, NY. If I lived anywhere near, I would sure try to see her. She had many health problems, including severe MCS, and for that reason, learned so many ways of dealing with it.

    The book is called "The E.I. Syndrome, An Rx for Environmental Illness." I have a used copy that I ordered from Amazon books. She's written several other health books also which are listed at Amazon.

    Sandy
  6. beverly20024

    beverly20024 New Member

    I could have written your post myself. I have the exact problems you have. My neighbour was using a highly scented dryer sheet, and the smell permiated the neighbourhood. Every time she did laundry, I would have major allergy symptoms that turned into a headache.

    My husband let her know about it and she very graciously changed to unscented sheets.

    I live in Canada and many of our department stores actually have perfume in their ventilation system. I've completely stopped shopping at the Bay. When you walk out, your clothes are infused with the smell of perfume. Nasty. What's up with that?

    My only coping mechanism is avoidance. If you have other tips, please, pass them on!

    Take care,
    Bev
    [This Message was Edited on 08/25/2004]
  7. rockyjs

    rockyjs Member

    I was diagnosed way back when "environmental illness" was just starting to emerge as a condition. Many doctors felt it was bogus and that we just wanted attention...I wish!

    I was so ill for many years that I almost never left home. We bought a little farm in the country but our neighbors burned trash and sprayed fields so I still had trouble. I had one safe room in our home where I slept and was so allergic to foods that I got down to two things that I tolerated.

    I started to go through a comprehensive treatment program, but for several reasons changed my mind (the primary reason being that no one seemed to really improve). I eventually found my own way of dealing with it.

    Wileyone, the reaction you have to ammonia is very common with MCS because we usually have some type of liver damage. It can be from toxins, a virus, hepatitis, etc, but once the liver has a diminished capacity to function, we start becoming intolerant of chemicals that require complex detoxification.

    My doctor wanted me to get a liver biopsy to check for fibrosis, but the test itself is so risky that I decided against it. As long as I'm very careful about chemical exposures and watch my diet my liver enzymes are good. However at one time I had cirrhosis with jaundice and liver failure. Milk thistle helped tremendously. My damage seems to be from a combination of Epstein-Barr virus and pesticide poisoning.

    Another thing that has really helped me is an amino acid called histidine. I only take a few capsules a week, but it cuts back on histamine production in the liver and keeps it from swelling so much (which slows down detoxification). Candida overgrowth can also cause liver problems and the histidine really helped with that, too.

    It's been about 10 years since I was at my worst. I can now go almost anywhere for a short period of time, although I make sure my home is "safe." If I travel I take an ozone machine and air filter so that I can keep one room safe to sleep in, either with friends or family or at a motel. I still wear a charcoal mask occasionally, especially around asphalt and other petroleum products.

    Jan

  8. wilyone41

    wilyone41 New Member

    Thanks for the info about the liver problems....they took my gall bladder out late last summer. Never had a problem at all with it before this illness. Had incredible lower chest pain one night, went in to ER...thought I was having a heart attack. They checked it and said I was having a gall bladder stone problem. Did surgery, found about a hundred stones in there...said that severe weight loss can cause them. I wonder now if that was what caused them. Still have them in a box in the cupboard.

    Thanks
  9. rzgtn5

    rzgtn5 New Member

    Flonase nasal spray has helped reduce my allergic and nonallergic reatctions. I have cfs and mcs. It will not cure mcs as nothing I've found yet has. Doctors give samples w/o insurance.

    If you work I found working 2nd shift helps greatly. The cars on the road and overall activity at companies is much less, later in the day. It has allowed my body to grow stronger.

    I feel anyone w/ mcs should have electric range at the minimun to avoid uneeded exposure to hyrocarbons.
    For me 8hrs sleep from 10pm to 6pm is unrefreshing while sleep from 1am to 9am a huge improvement.

    I feel anyone w/ mcs should have electric range at the minimun to avoid uneeded exposure to hyrocarbons.


    Arm and hammer baking soda along w/ borax can be used to clean nearly anything around the house.

    If fumes in your neighborhood or street are bothersome even a small window unit a/c can help reduce exposure. Try wearing a cotton mask for with a check valve for a few hours around the house and see if you feel better. If so try sleeping w it. Easier said than done.

    Avoidance is still key but you have to keep body in top shape so it is strong for the times you can;t. When I overdo it I can do everything right and not put a dent in my symptoms. Looking for a doctor to treat this you can forget. Being creative as possible and relief is possible.

    If you have air conditioning in the car use it.

    Try to put anything to the best possible advantage for your body. Most of what I listed doesn't cost much. take care.
  10. achy

    achy New Member

    I respond to many of the chemicals you listed....but perfumes are my #1 gripe. I have had to leave restaurants cause someone who "took a bath" in their perfume sits next to me. It litterally takes my breath away. (I also have asthma and use 2 inhalers)

    How do you nicely tell someone their perfume makes you ill??? I've tried several gentle approaches but I am usually cussed out cause their feeling got hurt.

    Oh well,,,as usualy WE are the ones that have to make do
    Achy
  11. rockyjs

    rockyjs Member

    I had a boss who used to put on loads of cologne in the morning and then make a bunch of phone calls from my desk before I got to work. I would sneeze my head off every morning and he finally realized I was allergic to his cologne.

    Most perfume smells like RAID to me. We have had to change seats many times in restaurants, concerts, church services, etc. But I do think more people are becoming aware. My biggest complaints are having to walk past perfume counters when you enter a department store and getting mail that has perfume samples in it.

    I have a hard time explaining to people that their fragrance is making me sick, but my husband doesn't :)

    Jan
  12. helpeachother

    helpeachother New Member

    WOW ! I had no idea that in just one day so many people would come here with their MCS info and unfortunate challenges. Thank you all and maybe we can help each other.

    Wilyone-You know you're right- ammonia and even animal urine has been making me sick also, and I didnt connect it to the MCS list. When you say your GI tract "quits working", does that mean cramps and diarrahea? My CFS/FM M.D. gave me questran powder (be sure to get the regular questran with sugar if you react to the phenalinalines in the sugar-free "questran light")

    Merrie, I too have the sick feeling and brain-fog stupor from the computer and if you get near the tv. I dont know if its the electromagnetic field, the warm plastic, or what but it is definate. I put a square piece of plexiglass much bigger than the screen in front of it (just lean it on the screen or shelf above. If you have any loose "sides" to the upper computer desk, try to cover the whole thing accross. Then, a small fan behind the screen blowing AWAY from the back of it and out a window or to somewhere you wont be. In addition, a fan blowing air on YOU accross your face NOT coming from the screen helps too. "They" make a thing called a "READING BOX" which is a glass box flat with an open front and a fan in the back so you can get a book or laptop in it andput your hands in the front. If you are like me and printing INK is really toxic, you should be able to read through the top. I haven't gotten one yet because I move at the speed of snail, but I found it in a web search "reading box".

    Sandy, THANKS very much for the Dr Rogers' info as I do live near there and will get the book.

    Beverly, you are lucky you have such a helping husband and a caring neighbors. I am not cynical or negative, but I have found that most even close friends and family do not alter their behavior for me AND MY SPOUSE who are both sick. My dear mother does comply, however. One relative was actually overheard saying to another, "I would NEVER be able to stop wearing my perfume for something like THAT" before she came into OUR house. We even sent her some literature on "what to do when you visit a person with chemical sensitivity" which I found on the web.

    Rocky, thanks for the LIVER INFO. again, for some reason, i never remembered (brain fog=cognitive impairment) that the liver is the detoxer. This is so important. PESTICIDES!!

    rzgtn5 thanks for importand points about COMBUSTIBLES IN THE HOME(and everywhere, of course). In addition to the stove, we had to move to a house with electric heat (gas or oil heating are in the home combustibles, no matter how small) The BAKING SODA & BORAX are great for cleaning and we use them. We use oatmeal bar soap and all natural oil-free fragrence-free shampoo and conditioner (all works great and leaves skin and hair soft without the) as well as "Allen's Naturally" dishwashing liquid( ALL MAIL ORDER AND CAN BE FOUND ON WEB). It's funny, I have sleep apnea and my BIPAP sleep machine has a huge disposable filter on it, so at night, I dont get sicker (except for the unrefreshed sleep from CFS (but without the machine, I go into unbelievable overwhelming profound fatigue so that all symptoms are worse and i cannot think at all or make a sensible sentence, so machine is necessary, earplugs too!)
    A/C,charcoal filter masks all good, but of course AVOIDANCE!

    Achy, yes We are the ones who must move and leave and be horrible sickened and inconvenienced. But we cant stop trying. The Priest in our church even asked the others to not wear fragrances to church (we'll see how many help out)

    rockyjs: Jan, PERFUME IS on the short list of the worst stuff. This is made with similar chemicals that are used in n e r v e - g a s in w a r f a r e and are (what else?) petroleum based. The perfume companies have lobbied us govt so they dont have to reveal the chemicals in their product that we are breathing and ingesting. Do some searches on the internet for "perfume" and "toxic" in the same line....

    THANKS AGAIN TO ALL today. The only cure that i have been told is AVOIDANCE which is easier said than done. I have a few combinations of pills that I take for the symptoms when they happen or regular daily or when about to go into toxic wal-mart for example. Depends on how tired and toxd i am as to how bad the reactions are.
    .Neurontin (rx)
    .GABA abbreviation for something -i use solgar
    .aquaban OTC diuretic when head arms chest etc swells
    .claritin (this shouldnt work but sometimes it helps along with this other group or maybe try benadryl but doesnt work for me)
    .diazapam (generic for rx valium)
    .also my doc gave me the questran as above which is to remove toxins from body to reduce body burden.

    There's so much more, but I now must go outside and gulp deeply of the fresh mountain air (drs made us move here, thank God!) Keep in touch with ideas and Thanks PEACE!


    [This Message was Edited on 08/25/2004]
  13. wilyone41

    wilyone41 New Member

    When I said it quits working...it does not work at all. Cannot "go" for days...a week w/o some serious help. Stomach will get so sensative I cannot eat for days either. Pretty much everything shuts down.
    Hope you get to feeling better.
  14. helpeachother

    helpeachother New Member

    Hi wileyone, Wow! That really is a (GI) shutdown! and then you cant even eat on top of it.

    I wish I could think of something helpful to say and I will try to keep the topic in my "mind" in case someting comes up.

    Right now I wish you healing peace and wellness. Take care.
  15. Annette2

    Annette2 New Member

    My pet peeve is scented candles. I have a co-worker who will not talk to me anymore because I asked her not to burn her scented candle. She thought that if she just closed the door to her office it would help, but the smell just permeates the whole place! It gives me headaches and makes me nauseous! She got so mad at me - a little 27-year-old twit! I was ready to bring in a doctor's note.

    I also can't walk by those candle stores in the mall. They make me sick! And when I go clothes shopping with my husband in one certain department store, I get headaches because the men's cologne counter is near the clothes. The saleswomen stand there and spray cologne into the air!!!!

    Annette2
  16. rockyjs

    rockyjs Member

    Annette, scented candles do me in, too. The only candles I tolerate are plain beeswax. I worked part-time as a bookkeeper in an interior design store several years ago and was actually doing very well until the Christmas season. The owner ordered boxes and boxes of candles to put out on the floor.

    The first morning I came to work and got a headache but wasn't too sick. The next day was worse, and by the fourth day I walked through the door, had a severe asthma attack with my throat closing off, and that was the end of that job!

    I had another bookkeeping job in a nice homebuilding company. The owners gave me a desk away from chemicals (like the blueprint machine) and seemed to be very understanding about my allergies. One Monday I came in and the whole office had been moved around to make room for some new workers. I was suddenly in a cubby right by the bathroom. People sprayed air freshener and burned scented candles and I got so sick I could hardly add numbers. I decided it would be best if I just worked for myself!

    HelpEachOther, I think mountain air is the best medicine for me (although the high altitude does seem to bother some poeple). My husband is remodeling a home at about 9500 feet and we were up there for several hours today.

    Fortunately I don't seem to be allergic to terpenes or pine pollen and I inhale to my heart's content! Today the aspens were just starting to turn and the elk were bugling just a few hundred feet from the house. It was heaven.

    Jan


    [This Message was Edited on 09/04/2004]
  17. suz9601

    suz9601 Member

    This is a new one for me. I am developing more MCS problems everyday. I am not allergic to every filler that is put into supplements and drugs. Scents like cig smoke and gas and dryers make me very sick. I have had CFS/Fm 8 years and just developed the MCS part about a year and a half ago. It is awful. You're not alone
  18. DShep

    DShep New Member

    I don't react to most of the things I've heard discussed here, so I'm in pretty good shape on this one, although I no longer like perfume on women or use aftershave lotion. But I react quickly to printer's ink (as in the newspaper). I quit taking the paper because of it;, however, since I moved within distance I now take the Fresno Bee, and they use a non-smudge form of ink that isn't nearly so bad. When I read a newspaper with regular printer's ink, I read it quickly and get it out the door. Then I wash my face and hands, which is an immediate cure for my skin stinging and itching.

    I am also highly sensitive to many forms of medication. I have the problem of not being able to get a good breath, and when I went to a respirtory specialists he gave me an inhailer that contained steroids, which resulted in severe arthritis in all my joints and panic attacks. When I told my doctor, he said that the inhailer simply couldn't do that. He also told me that I didn't have CFS, and that after he solved my sleep problem all my symptoms would disappear. I also had a severe reaction to Paxel, which he prescribed to get rid of the panic attacks, so he wanted to give me another antidepressant to get rid of those side effects, etc., etc. Well, you know the rest of this story. I'm back to self-medicating.

    Hope this helps.
  19. helpeachother

    helpeachother New Member

    Hi and thanks very much for the MCS support and info!

    dshep, Sorry about your awful situation! Hang in there. You know, I can't believe I forgot to mention the toxic chemical that started it all for me PRINTING INK!. Its the worst, and of course it's everywhere. It does save me from reading the paper tho...."They" make a thing called a reading box (search above for content) which is glass and blows out the air from over the printed matter or P.C.

    rockyjs, Mountain air is it, but my whole syndrome started right after a 7,000 ft mountain trip. A few years ago, my 2 doctors seriously agreed that I had to move "away" or would never get better. After a long long process, moved to the top of a 2,000 ft mountain in the country and just going outside to breathe is wonderful. We CFS/FM'ers all take such shallow breaths, but outside is wonderful.

    Annette2, scented candles are on the short list, for sure whether they are burning or not. I think you should get your documentation together regarding office toxins and present to mgt with yes a doctors note the next time some uncaring person tries to tox you! I know they dont (and CANT) understand, but thats no reason for us to suffer.

    suz9601, Thanks for the support. It makes me feel better to know other people understand this, though sad about all the suffering. I had no idea when I started this string that so many people REALIZED they had this. I'm sure that soo many have it and discount it to "just allergies" (docs included). Your time line of illnesses sounds just about like mine in the same order too. Only thing is I started with 5 yrs undiagnosed Lyme disease before adding the CFS/ FM/MCS etc etc.

    If anyone has any other remedies for the symptoms, it would help. Thanks again and Peace


  20. helpeachother

    helpeachother New Member

    You too? Other than my mom, most of the family pretend it isnt happening. All the toxs even if they come here! I actually had my sister in law "sneak" scented candles in to my house in her SUITCASE when she came to stay. Aaaggghh!

    She confided to my spouse, Oh, I could never give up wearing perfume and stuff like that "JUST because it BOTHERS" someone.

    I hate to be blunt, but stupidity always amazes me.....but I will say in their defense (and I hate to defend them), that 10 years ago I would not have UNDERSTOOD chemical sensitivities. I hope, though, I would have gone along with a sick persons wishes not to suffer.

    Take care and stay away from those awful PLUG-IN neurotoxic nerve gas fragrance products. Peace