There is no time like to present to make positive changes to your lifestyle
I noticed the connection between my severe symptoms and my environmental sensitivities when I sat in the sports dome in Montreal as I watched the Argos play football against another team.
I couldn’t focus on the game because my skin, lungs, eyes and nose were burning, my muscles felt as though they were draining off my body in long and painfully clumps, there were wavy lines traveling through my body, my head felt as though snakes were crawling inside my skull and at random spots they would bite my brain creating a stabbing pressure that abated to a dull throb.
My eyes were blurring and I got sleepier as I sat in my seat. Throughout the duration of the football game I was having a conversation with the voice in my head that kept telling me that I was stupid for not being able to watch the game just like everyone else. It kept pointing out that: “this person and that person was having a good time, and I was being my normal self and not wanting to enjoy myself”. The voice mocked me by saying: “that if there was something really wrong with me then I should be able to get up and leave just like that person was”. When I didn’t get up, the voice dug in deeper by pointing out that: “There was nothing wrong with me, all I wanted was attention”.
I wanted to get up but I was experiencing conflicting motivations. My body ached so badly that I couldn’t fathom the thought of moving and walking up stairs, but as I sat there I kept feeling worse. And I didn’t know what to do. When I eventually got up, I walked up and out of the dome and into the concession area to notice that there was a distinct difference in the air quality. I was disoriented and the world around me was moving in directions in opposition to the normal senses (sort of like looking into fun-mirrors at a carnival).
It turned out that I sat and listened to the voice for the entire football game because as soon as I got into clearer air my high school band class came out of the dome and it was time to go to our hotel. The next day I was coughing up thick yellow/green/brownish chunks and the center of my chest burned.
The symptoms didn’t start as soon as I sat down they began the moment my high school wind ensemble stepped on to the field and began to play the Canadian and American National Anthems for a crowd of eager sports fans. I noticed a change in my vision, I felt something form over my entire body and my head felt foggy. We started playing and my hearing became patchy and distant and my body progressed from internally vibrating to a heavy sinking feeling. I couldn’t remember the notes to the anthems and at one point I forgot what anthem we were playing so I dropped my left arm and held my flute with my right hand as I slumped to the side in pain and very annoyed at the fact that I couldn’t sit down.
Sadly, this was most likely televised and many people saw some girl obviously pretending to play her instrument. I probably looked as though I didn’t want to be there, but I was in so much pain.
This was in the Spring of 2003 and I was out of school for 2 weeks and I didn’t feel better until 4 weeks after I got back from a week long trip to Montreal.
Over the years I have tried getting help with my situation. I have been told countless times that I just experienced a really bad flu, I had a lung infection, one doctor even told me that what I was experiencing isn’t real because from known literature only specific symptoms were ever reported with tobacco exposure. The idea that I was experiencing these symptoms because of my exposure to cigarette and other tobacco products was not an option. And when I found a doctor who would listen to that idea I was told to abstain from the environment or plug my nose and everything would be okay. Those options don’t help because I can smell the smoke long before I can see the smoker so I have not defense. And even when I wore a mask the scent would penetrate it and would smell sweeter and have a stronger and longer effect on my body.
Over the past two years I have pinned my reactions on commercial chemicals and tobacco products. I had noticed that there were certain foods that I could and couldn’t eat when I was effected and I thought that I had an idea of how to defend and protect myself. It was ( and has been difficult) to find support from people when I mention what my ailments stem from and because of that I spiraled into a deep depressive and choatic mental state. It wasn’t until 3 months ago that The Environmental Clinic in my area diagnosed me with having multiple chemical sensitivity and referred me to a family physician in my area that dealt with patients with this sensitivity.
Now here is the big problem:
For the past 12 months I have been having trouble eating. At first it started with eating anything and experiencing intense pain all over my body and a need to sleep that could not be ignored. I went on an elimination diet monitored by myself (as I was discouraged by doctors and didn’t want to visit another one) and I took out dairy and gluten and sometimes meat. I thought that I had it under control until the foods that I deemed were appropriate from my functioning created intense pain and the need to sleep. For three days I ate peanuts and cookies. I then realized that gluten and dairy were not my problem because I devoured chocolate cookies for breakfast, lunch and dinner and I was symptom free. I was also noticing that the sharp stabbing pain in my heart, that I had been experiencing since I was about 9 years old, occurred more frequently and lasted much longer. I was now experiencing shortness of breath and numbing/tingling pain in my left arm with each episode…(my heart has been monitored for a week, a time, a few times, in high school and the reading showed no abnormalities, I have also been to the hospital and they did a heart reading and that showed normal functioning).
Eight months ago I decided that I was going to eat the diary and gluten free diet and sleep whenever I needed to. I wasn’t working so I had the luxury of sleeping 8-10 hours at night and an 1 hour here and there when I ate a meal.
I finally got an appointment and the Environmental Clinic did their tests and I have a gluten intolerance, I am low in vitamins and a mineral and a few other things are wrong.
Here is the bigger problem:
Two months ago I realized that I couldn’t eat cooked foods, so I cut out meat and quinoa and cooked vegetables from my diet. I was cool with that because I have this notion that my body doesn’t produce the right amount of enzymes for proper digestion and I wanted to go on a raw diet. I started my raw diet and started noticing that I couldn’t eat certain food items without experiencing tightness in my chest, increased phlegm, wheezing, pain and heat all over my skin (stronger on my chest and back). I then realized that these foods cross related to the food items that I am allergic to. I disregarded the fact that I am sensitive to dark leafy greens and peanuts and tree nuts and made kale/spinach smoothies and ate nuts everyday because I needed to put vitamins and protein in my body. I was experiencing mild symptoms and thought I could live with them. Multivitamins make me feel as though my chest is filling up and my throat feels expanded. I don’t understand what that means so I don’t take multivitamins. I stopped eating peanuts and tree nuts when my chest started getting tight, phlegmy and I began wheezing and I stopped drinking smoothies when I needed to sleep and my body started to hurt after I started drinking them.
Here is the biggest problem:
The family physician that I was referred to has not thought to refer me to a dietician and I mentioned from my first visit that all I can eat is peanuts/tree nuts and Kale smoothies. I told her that I have chest tightness and stabbing heart pains. She wondered if I had an EEG, I mentioned the monitoring in high school and I told her that I had a chest x-ray with the Environmental Health Clinic and that they would send my results to her (I haven’t received a call about the x-ray so I assume that everything is fine). After our first visit she told me that because of my age she doesn’t believe that I have anything wrong with my heart or lungs and that my pain is from anxiety. When my blood work was transferred to her she was stunned at my results. She didn’t mention anything about my IgE value being in the high 900s when the maximum level is 300 (I know because the Doctor at the Health Clinic told me and ordered a stool test because she believed I could have an intestinal parasite). I’m sure there are other puzzling readings from my test but I don’t know what they are.
I also have a low white blood cell count. The only test this doctor wants is another CBC, but I am not physically well enough to give anymore blood. The blood I gave for her physical disrupted my ability to eat, I was fatigued and in pain for over two weeks and I craved foods that I shouldn’t eat but ate because they were the only food I wanted and I paid for it each day.
As of this moment the only things I can eat (and honestly I am reacting to it as well but the symptoms are mild) is sprouted buckwheat, avocado and hemp oil. I eat a tablespoon of raw honey to “boost” my immune system but I react to that as well but I don’t know what else to do. I take 5000 IU of liquid vitamin D3 because the doctor mentioned that I might be sensitive to the fillers in vitamins and I am deficient. I purchased “Rejuvenate Cell Therapy” and have been placing that in my water, I don’t feel good each time I take a sip of water, but I need to drink it. I am so fed up with doctors, and people thinking that they know.
I wasn’t sad until I got to this point in the letter because there is something wrong and I can’t get proper help and I believe I am dying and it’s a waiting game for me right now. I don’t go outside unless I need to buy food, because outside smells of car fumes, laundry detergent, shampoos, perfumes, cigarette smoke…
I asked one doctor if I would have to die before I got help and he said yes.
This will help others with similar symptoms to mine and I hope they will get help before it gets really bad.
Interested in more discussions like this? Go to the Mental Health Support Group.
What a challenge and then some. I see you have tried so many things. Well done. You can be proud that you have listened to your needs and adjusted accordingly. I’m so sorry success is minimal or short-lived.
Why don’t you make an appointment at Mayo and have them check you out? It can’t hurt to have a second opinion on the allergies and chemical sensitivities.
Thank you for your response. You said that I can be proud and I kept thinking of reasons why that isn’t possible. but I just read your response again and you are telling me that I am doing a good job. I really appreciate that. A new year is on the horizon and one of my resolutions is to be less negative ( I need to start thinking with a mind where nothing is impossible) and know that things will be better as 2011 turns to 2012 and so on.
I even put off looking at responses on this site because I thought there would be none. Meh. Life will be better, I daydream scenarios of getting my Holistic Nutrition Certification through distance-learning so that I don’t have to be bombarded with people, the outside environment and their smells. From learning about food and the environment and their affect on the body, magic will happen and I will be able to go back to University and transfer into a Music program. More magic will happen and I will compose music, write articles for magazines, write books, and design an environment where everything is chemical-free because there will be more people who experience symptoms like mine and they will need a safe haven for their recovery (because I will have found what’s wrong, what to do etc.) Smile* I just thought of “Mrs. Doubtfire”, the scene where she jumps over the banister and shouts: “Help is on the way!” Anywho, I also need my children (when I decide to have them) to grow up without experiencing what I have.
The first thing I need to do though, is to live as stress free as possible and be willing to accept myself unconditionally.
Thank you again, Shingles
Making an appointment with the Mayo Clinic is a great idea ( I didn’t think of it), if living in Canada isn’t a problem then they will be my next stop for medical assistance. I had decided upon waiting until the spring to speak to a different doctor, so why not this place?
Thanks for the idea,
Happy New Year!
Could I have an update on your progress, if any? I also suffer with Multiple Chemical Sinsitivity and stay sick because we live in a chemical overrun world now and there is no where to hide. My doctor sent me to a specialist and he basically said, Go home and live with it. I went to a specialist again, same thing. My husband has 0 sympathy for me because he is the kind of person who had no empathy for anyone. No one understands. One doctor I went to insuated that it was all in my head and gave me an anxiety pill. I now am seeing an Herbalist. She is doing a liver cleanse (no fasting) and it will last 6 months minimum to a year. I have no insurance because my husband jumps from one job to another and is not responsible nor seems to even care. That does not help the situation at all. If the liver cleanse helps I will let yu know. I am on my second month now with the cleansing. She had me take the Liver Cleanse, then NAC for a month and start Addicide Chord (while continuing the NAC for at least 6 months). I believe in prayer and I have really been praying, having the church pray for me and seeking help through doctors (I gave up on doctors now because the gave up on me) and now the herbalist. I do believe in all natural remedies and homeopathic remedies. Please “REPLY”; all who suffer with MCS please reply and maybe we can help each other. Pease don’t suggest I go to the Mayo Clinic because I would have gone there years ago if I had the finances. Thanks to all and God Bless.
Hi Akae, I too have MCS. I have have many exposures to chemical incitents over my life which have caused my to have a heavy toxic load. For years I have had to limit my exposure to environments that trigger me and my world has been shrinking. Recently, I have been researching Dr. William Rae in Dallas who is the founder of the Environmental Medicine Field. He has treated over 40,000 patients. I’ve watched his youtube lectures and read articles that I’ve ordered from his online store. Its been very helpful and I may visit the clinic for treatment.
I understand that there is probably no simple or single treatment that will resolve MCS. Dr. Rae discusses several elements that must be addresses for us to function and be healthy. I’ll briefly mention them.
Diet – We can control our diet and must reduce our toxic load as much as possible as it has an effect on our resiliency over environment and chemicals. Dr Rae recommends a simple rotation diet. You can google this. Also, drinking water is extremely important.
Detoxing – To reduce the load within my body, I do the following: Infrared Saunas, and EDTA Chelation. Oxygen therapy is supposed to be helpful as well. I’m looking into EWOT. Google these things.
Environment – Your home should be as clean as possible and there is quite a lot of information about this on the web. The test is that when at home you should recover from the outside environment. Long term this can provide more resiliency. The goal is to avoid anything that triggers us. You should have more resiliency if you follow a diet and detox protocol. Do what ever you can to clean up your work environment if at all possible. (I may have to leave my current job if I can’t improve the environment or negotiate accommodations.
It sounds like you may need some help so try to look at Dr. Raes web site. They can test you to see what is triggering you and then design a plan to help you recover. From my past experiences I believe that I can only manage this and that I probably won’t be able to tolerate chemical incitents at a small or moderate level.
I’d like to hear your response to my post if possible… Jordan
JordanM. this is the most positive post. The stories all sound the same… it is just sad that the world.. the “world” we live in expects so much from us, and we ask for so little in return. I can’t believe how people can’t just go 8 hours or so without perfumes…
Oh wow- I just realized this thread is super old! Well, I’m going to write anyway…
I’d recommend seeing a functional doctor to have an Igenex Lyme panel done .
I too have suffered from (and still continue to after two failed stem cell treatments) from MCS/EI and food issues. It’s weird how there seems to be no rhyme or reason as to what bothers me and what does not.
I also have the MTHFR gene mutation which does not allow me to metabolize vitamins, medications, etc…or detox chemicals or toxins from my body…so I suffer.
After becoming disabled my ex of 13 years left me and kicked me out of our home that was my sanctuary- and I lost my corporate insurance so I can’t see the doctors and specialists I saw previously -and I have not been able to find anywhere I can live since leaving our home in January 2019.
I get your suffering.
Unfortunately, I’ve tried everything under the sun and can’t seem to make anything much better.
Things that had helped me were:
-Juicing organic cabbage for healing my stomach and a way to get iron and other important vitamins
– finding a probiotic I could tolerate (nongmo /organic if possible) and I’d have to switch it up with others when the brand i would use wouldn’t work anymore
– Epsom salts baths ( I started with 1/2 cup salts and worked my way up to 2) in very warm but not hot water and I started with timing those at 10 minutes and worked my way up to 1/2 hour (all I could tolerate). In the morning I would be a LOT smaller and felt better.
– allergy testing
I know I know- but, knowing what foods and trees and weeds and additives such you are allergic to may help with identifying indoor VOCs and their sources…like if you are allergic to ragweed you can’t drink chamomile tea, and if you are allergic to pine you should have pine wood furniture…and limit your exposure to vinyls and glues and plastics and dyes and perfumes (make up, detergent, fabric softener, shampoo and conditioner, dish soap, even my air purifier company started adding potassium iodide to the new coconut shell based filters and I am allergic to all that so… had to find a different one for severe MCS made from German hardwood …also it could be your water as so many additives and contamination gets into that – even the water filters for industrial osmosis filtration systems have coconut fiber charcoal filters… I can’t drink filtered water…even bottled water as they use the same process…but I can tolerate Poland springs, deer park – but the best one I’ve found that doesn’t make my throat swell at all is Fiji water. They do not use those filters, and they put nothing in their water for taste or nutrition ( like Dasani for instance- that’s a HUGE offender for me) and I can’t use a Pur filter or Brita either.
– stop using antiperspirant!!!
So many chemicals in that stuff. I know people say they can’t live without it because they stink – but that smell is actually toxins leaving your body and the underarm area is filled with glands that release toxins, which is important to aid in detoxification- so you need to keep that free. After a while of not wearing anything, you will notice you smell different (better) and you feel better. You start to smell like “nothing”.
It’s all trial and error and there are so many things possible that can affect each one of us- and depending on our genetic make up, affect each one of us differently so, what works for one may not necessarily work for another…but doing what you can to limit your exposure to things helps. I have to leave the windows open in my apartment because I get so lethargic and sick and in pain and start having neurological and gastrointestinal and brain and allergic issues I feel like I will die…unfortunately, being on disability does not afford me the means to be in a safe place and no one seems to understand or care.
Good luck to you and I hope this helps
@mallard1971 Welcome to Mayo Clinic Connect, a place to give and get support.
The last two years have been rough. It sounds like you do have housing but you do not feel it is safe. Did I get that right?
In order for me to connect you with groups, discussions, and members that may have similar experiences, may I ask a few questions?
Did you say that you are on disability for MCS/EI and food issues? Do you also have Lyme?
Geeze, you poor person, sounds miserable. I also have multi sensativity to chemicals. Cosmetics, detergents, paint products on and on. I was an artist in my young years and just breathed in too many toxins, heavy metals, paint thinner, oil paint. My system has no tolerance for such substances. So, I avoid them. Food, certain foods cause water retension and with a weak heart, that's a problem. However, I learned that celery is a natural diatretic, so I eat raw celery almost daily and it causes the extra water to drop. I did elimination dieting with foods. Dropped fried foods, dairy, chicken and other poultry, cheese, caffaine ( except alittle dark chocolate), most refine sugary stuff. (If I crave a cooky, I'll take a couple of bites, and chew it up enjoying the flavor, then spit it out on a papertowel and toss. You'd be amazed how much junk you are not allowing down the throat. Remember , sugar treats are not food. And only do what feels right, massage therapy, swimming, beautiful music, prayer, contemplation, chat with friends, nature and gardening. Things that nourish the soul. Simplify helps.73age.