Severe MCS/ES… What Does It Mean?

To some degree, severe MCS/ES (like pain) is subjective. In other ways it’s a moving target, as we can be fine (or almost fine) one minute, and be completely incapacitated the next hour (day, week, or month) from an exposure, or combination of exposures. One day, a perfume exposure during lunch with friends might “just” give someone a throbbing headache for the rest of the day, but the next day, because there was also a cloud of diesel smoke, a fragrance contaminated piece of mail, someone installed wi-fi in the apartment next door, and someone else’s dryer vent was pumping out chemicals when we walked by with the dog, the same 3 breaths of perfume at the pet store we were trying to buy dog food from, could send us to bed for a week, or longer.

To make matters more difficult for others to accurately assess (and assumptions and clueless opinions are rampant where invisible disabilities are concerned), the recovery period, when most incapacity takes place, occurs when no-one is around to witness the effects, as many symptoms are delayed reactions. This means that people with severe MCS/ES are usually only seen during better moments, not when we’re at our worst.

severe mcs es

Something else I often see is that people’s ability to tolerate change and adversity varies greatly. Some people fall apart when faced with the slightest challenge, while others can endure unbelievably difficult circumstances and suffering without ever complaining.

One person’s severe is another person’s “just another day”. And, as I found out, when we think things are as bad as they can possibly be, they can get 1000 times worse (especially where brain function is concerned). This can really confuse people, ourselves included…

That said, there are tools that have been designed to help medical professionals assess all kinds of health and disabilities. And accurate assessment is especially important when applying for disability benefits.

What follows are a few tools that can help us understand. This information is not meant for acquiring disability benefits. I’m providing it for educational purposes only.

How can “sensitivity” symptoms affect life?

qeesi sectionFrom the Quick Environmental Exposure and Sensitivity Inventory (QEESI)
http://drclaudiamiller.com/qeesitest/

The following (and much more) is found on my MCS/ES page at the top:

1999 Consensus Definition Criteria:

1. MCS is a chronic condition.
2. Symptoms recur reproducibly.
3. Symptoms recur in response to low levels of chemical exposure.
4. Symptoms occur when exposed to multiple unrelated chemicals.
5. Symptoms improve or resolve when trigger chemicals (incitants) are removed.
6. Multiple organ systems are affected.

Multiple Chemical Sensitivity: a 1999 Consensus.
Archives of Environmental Health. 54: No 3, May/June 1999; 147-149.

Additional Symptoms Distinguishing MCS Cases from Controls:
-having a stronger sense of smell than others
-difficulty concentrating
-feeling dull or groggy
-feeling spacey

McKeown-Eyssen GE, Baines CJ, Marshall LM, Jazmaji V, Sokoloff ER. Multiple chemical sensitivity: discriminant validity of case definitions. Archives of Environmental Health. 2001; 56(5): 406-412.

A pattern consistent with these diagnostic criteria is also reported for sensitivities (sometimes called EHS) to electromagnetic phenomena (EMR/EMF).

 ∴

Symptoms

Symptoms of environmental sensitivities are unique to the individual. …

Sensitivity reactions to chemicals may vary for acute or chronic exposures. A single, isolated low-level exposure (e.g. perfume on someone several seats away in the theatre or bus, that is not obviously harming the wearer) may cause significant symptoms such as headache, confusion, breathing difficulties or loss of balance in a person with environmental sensitivities. These symptoms may take minutes, hours or days to resolve. However, regular exposure to something to which one is sensitive may lead to habituation or “masking,” and chronic ill-health that may even be accepted as normal.3  …

See the full list from  The Medical Perspective on Environmental Sensitivities (CHRC 2007) By: Margaret E. Sears (M.Eng., Ph.D.) here: https://lindasepp.wordpress.com/2013/05/25/mcses-symptoms-and-environmental-incitants/

Categorical guidelines
for levels of disability

Mild
Able to work.
Frequently has many symptoms, some of vague nature.
May find petrochemicals and other environmental exposures such as auto exhausts cigarette smoke, and cleaning materials to be unpleasant or produce uncomfortable feelings, but able to work effectively.

Moderate
Able to work at home or with controlled environment at work place.
May have to use gas mask or charcoal mask and air purifier filter system.
Exposure to inciting agents causes acute symptoms which may alter functional capacity (severe headache, muscle pain, poor concentration, memory loss, etc.).
May have to change job or work conditions if environmental pollution is severe enough.

Severe
Unable to work effectively, even with environmental control, using avoidance, masks or filters.
On some days, may be able to work 30 to 60 minute shifts several times a day if in a very controlled environment. Reacts to chemicals such as insecticide, phenols, chlorine, formaldehyde, perfume, petro-chemicals, etc.
Has severe mental and physical symptoms which may or may not clear.
Public exposures such as church, post office, movie or shopping are not tolerated.
Visitors to home must clean up significantly.
Can usually care for self in a home situation.
May be able to drive if automobile made free of inciting agents, sealed, and has charcoal air filters.
Has difficulty with other family members or guests in home who bring in aggravating exposures on clothing, printed material, hair, etc.
Adversely reacts to many medications.
May have to move if existing home has uncontrollable outdoor pollution, is new and has not outgassed, or has other significant problems of mold, flooring, or other incitants.
Requires a clean room, carpet-free, cleared of inciting agents, special heating and air filtering.
Must wear natural fiber clothing specially laundered.

Disabled
Requires assistance to function in rigidly controlled home environment.
Reactive symptoms have spread to virtually all environmental agents including chemicals, foods, pollens, and molds.
Has mental and physical symptoms that are incapacitating, although frequently not structurally described.
Total and very restrictive environmental control required in home and vehicle.
Cannot tolerate family or help who have outside exposures with even small contamination of clothing or hair with odors.
Visitors usually are too toxic to be tolerated indoors.
Usually requires several moves to different areas of the country to find tolerable climate which is also chemical free.
May require unusual and extensive measures to make a tolerable clean refuge area to sleep in.
Has difficulties with virtually everything in environment (universal reactor).

From “E.I. Disability Classification”, l987, The Human Ecologist, No. 35, P. 13. via “The Phenomenology of Multiple Chemical Sensitivity at Four Levels of Severity”, Pamela Reed Gibson, James Madison University

ACTIVITY LOG and FUNCTIONAL CAPACITY SCALE
The Functional Capacity Scale incorporates energy rating, symptom severity, and activity level.
http://www.ocfp.on.ca/docs/committee-documents/activity-log-and-functiona-capacity-scale.pdf

 Then there’s the matter of neurotoxicity and brain functioning…

“Neurological symptoms are almost universal.” (Sears)

In fact, many MCS/ES and TBI or ABI symptoms are quite interchangeable!

Traumatic (Toxic) Brain Injury (TBI) or Aquired Brain Injury (ABI) symptoms vary depending on the extent of the injury and the area of the brain affected. Some symptoms appear immediately; others may appear several days or even weeks later. A person with TBI may or may not lose consciousness—loss of consciousness is not always a sign of severe TBI.

http://www.nichd.nih.gov/health/topics/tbi/conditioninfo/Pages/symptoms.aspx

Symptoms of Mild TBI

A person with a mild TBI may experience:

  • Headache
  • Confusion
  • Lightheadedness
  • Dizziness
  • Blurred vision
  • Ringing in the ears
  • Tiredness or sleepiness
  • A bad taste in the mouth
  • A change in sleep habits
  • Behavior or mood changes
  • Trouble with memory, concentration, attention, or thinking
  • Loss of consciousness lasting a few seconds to minutes1
  • Sensitivity to light or sound
  • Nausea or vomiting2

Symptoms of Moderate or Severe TBI

A person with moderate or severe TBI may have some of the symptoms listed above. In addition, the person may experience any of the following:

  • Headache that gets worse or won’t go away
  • Repeated vomiting or nausea
  • Slurred speech
  • Convulsions or seizures
  • An inability to wake up from sleep
  • Enlargement of the pupil (dark center) of one or both eyes
  • Numbness or tingling of arms or legs
  • Loss of coordination
  • Increased confusion, restlessness, or agitation
  • Loss of consciousness lasting a few minutes to hours3

Effects Of Brain Injury
http://nbia.ca/effects-brain-injury/

 

Our brain controls virtually every function of our bodies. After a brain injury, many parts of the brain will work just as well as they always did, and other parts will not. The damage can vary from very mild to very severe. The result is that brain function can be somewhat patchy and inconsistent. No two people will have the same injury, although there are many effects that are typical among survivors.
So, what does a brain injury “look” like?

Brain Injury can be very difficult to identify simply by looking at a person. It is often called the “invisible injury” because most of the problems involve thinking and emotions. Family members, friends and professionals may not “see” your brain injury at all, which can lead to a lot of frustration for everyone.


What does a brain injury “feel” like?

Survivors of brain injury say it feels like:

Living in a cloud.

Getting really drunk.

Being hung-over 24/7.

Being in a hot tub way too long.

Waking up from fainting.

Looking inside your head & seeing mushroom soup.

Floating around weightless in a total black abyss with no gravity. Can’t tell what is up, down or sideways. Can’t get a handhold on anything.

Trying to read multiple posters in a dark room with a narrow beam flashlight. As soon as you move the beam to a new spot, the first spot you looked at disappears.

Physical Effects – This includes physical changes in body functions

 

Effects of Brain Injury – Tired

♦ Energy crashes – gets tired very easily, needs long naps to recover

♦ Sleep problems – can’t get to sleep, wakes up frequently, can’t wake up

♦ Headaches – very intense, sharp, burning or jolting

♦ Chronic pain – ongoing pain in body

♦ Ringing in the ears – also known as tinnitus, often sounds like crickets

♦ Changes in senses – sight, smell, taste and hearing

♦ Changes in appetite – doesn’t feel hunger, or never feels full after eating

♦ Altered body temperature – doesn’t feel heat or cold, body temperature fluctuates

♦ Difficulty swallowing – coughs or chokes when eating or drinking

♦ Changes in speech – stutters, mixes words up

♦ Balance/co-ordination – loses balance, falls down, staggers when walking

♦ Paralysis/weakness – has noticably less strength in arms or legs

♦ Numbness/tingling – feels like limb’s falling asleep

♦ Muscle spasms – shaking, stiff or jerking muscles

♦ Seizures – convulsions

 

Cognitive Effects – This includes changes in thinking abilities

♦ Difficulty focusing – mind seems to wander, easily distracted

♦ Memory problems – forget things short term, and/or spotty long term memories◊

♦ Slowed thinking – world feels too fast, can’t keep up

♦ Flooding – brain gets overwhelmed and shuts down

♦ Trouble understanding – takes longer to learn

♦ Learning from experience – keeps doing the same things over and over

♦ Perseveration – excessive fixation on some thoughts, trouble letting go

♦ Rigid thinking – things are only “black & white”, there is no in-between

♦ Difficulty with executive functions such as:

o Sequencing – has trouble knowing what order to do things in

o Organizing – is easily mixed up, misses things,

o Planning – has trouble figuring out how to meet goals

o Reasoning – has trouble understanding what is appropriate

o Decision Making – has trouble looking at pro’s and con’s of matters

o Problem solving – has trouble looking at options in order to find good solutions

o Serial-tasking – Has trouble trying to do more than one task at a time

 

Psychosocial Effects – changes in emotions and social behaviour

♦ Reduced self-awareness – not able to see themself or their problems honestly

♦ Increased self-focus – see only their own needs, finds it hard to see others’ point of view

♦ Emotional fluctuations – emotions are very intense, change rapidly, do not fit

♦ Depression – grieving over what is lost, sad, suicidal

♦ Anxiety and/or stress – feel stressed, jittery, restless, frightened

♦ Impatience and anger – has a quick temper, sometimes very threatening

♦ Impulsivity – acts without thinking first, with no thought to consequences

♦ Difficulty coping with change – can either be spur of the moment, or routine change

♦ Lower motivation and follow through – trouble getting started and finishing

♦ Changes in social skills – difficulties following socially acceptable behaviors

♦ Misperceptions – misunderstands people and things

♦ Changed sexual interest – has either decreased or increased interest

♦ Relationship problems – difficulty with family, friends and spouse

♦ Use of alcohol/ drugs – self-medication to cope with daily problems

♦ Reduced ability to work – cannot keep pace, cannot return to old job

♦ Changes in self-identity – changes in personality, does not know how to define self

The good news is that many of these challenges are easily dealt with using compensatory, or coping, strategies.

The above (and much more worth examining) from http://nbia.ca/

One difficult thing with MCS/ES is that our injuries can vary significantly from day to day, or week to week, or month to month, depending on how well we have managed to avoid exposures (among other things), but so much of that is completely beyond our control. The lack of consistency usually adds an extra layer of difficulty to coping well.

Many of us cope by planning as best we can, and take a great many precautions when we need to do something, so that we can minimize the exposures we are subjected to and the time required to recover from them.

There was a time that I could subject myself to “planned exposures”, like grocery shopping, or going to the doctor, or even going out to hear live music occasionally, things that I either had to do or which I loved to do, but it was only possible by not doing anything for a few days before, and taking several days to recover after.

When my MCS/ES was already serious enough to prevent me from being able to work in any uncontrolled environment (as they all are), I was even able to go on a few flights and attend a couple of  conferences in an attempt to develop working skills I could use in controlled environments (although the hotel issues cost me dearly despite traveling with my own pillow and sheets). Those activities took a lot out of me, and I was not able to commit to doing other things at that time, as I never know how well I’d be the next day, or if I’d be flat out in bed and for how long. Yet I still had friends then who  had no idea how much I had to limit my life out of their sight to be able to see them.

The severity of MCS/ES can vary daily, weekly, monthly… by how many exposures we’ve had, by how full our buckets are, by how well we manage to eat, breathe, and rest… and by many other things that we have absolutely no control over. 

Those of us with MCS/ES have to make a lot of personal sacrifices to go out in public, to do anything somewhat normal looking, and we suffer the consequences alone afterwards. That is, if we are still able to look after ourselves during the recovery time. If we cross that line, if we can’t properly look after our basic needs after exposures,  beyond the ones we have to endure for minimal survival, then going out becomes mostly impossible. And that becomes a severely isolating and truly difficult life.

That is the part people don’t get when they judge us by appearances when they see us (or hear us) somewhat functional. How much effort it takes to remain functional by avoiding exposures. We are often accused of being liars about our level of disability when we ask for help, if we have ever been seen making any (invisible) effort to go out or have some fun to relieve the daily suffering. And that’s a different kind of hurt we have to endure on top of what feels like being assaulted from exposures.

Coping strategies help, of course, but are made much more challenging by the day to day unpredictability and variability of exposures, which requires so much more flexibility than a fixed disability (like a lack of legs) does (ok, so that might be a partially  bad example, as a lack of legs would require a lot of extra physical flexibility), or by how well our brains function after the exposures,  as well as by the lack of awareness and acceptance. Not having the seriousness of the symptoms accepted also subjects people to a lot of extra, unnecessary suffering, and results in a lack of necessary support that many other people are offered and take for granted when it’s needed.

We have a ways to go before people with MCS/ES have recognition, inclusion, and equity. And you can help make it happen!

MCS/ES is preventable. As are many other chronic and sometimes fatal health conditions caused by the same things that trigger MCS/ES. No-one should be subjected to toxic chemicals and excessive levels of EMF/EMR on a daily basis the way we all are now. We need to educate ourselves, change our habits, and demand systemic change.

Fragrance chemicals are only one of the issues, but they are a big part of the problem.

FRAGRANCE unlearn it

 ♥

Wireless devices are something else we need to reduce our dependence on.

“Delegitimizing those with ES-MCS, who may be warning us all of the need for toxics reduction, also tends to impede development of practical, precautionary, potentially preventive and cost-saving public health strategies.”

http://www.womenscollegehospital.ca/assets/legacy/wch/pdfs/ESMCSStatusReportJune22011.pdf

Accommodating people with MCS/ES means healthier environments for everyone.


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14 responses to “Severe MCS/ES… What Does It Mean?

  1. Excellent presentation:”Current concepts in diagnosis and management of
    EHS Radiation Research Trust”Dr Erica Mallery-Blythe Society of Ecological Medicine BSEM March 2014 Well worth watching.You-tube

  2. This is a great post! Thank You!!!

  3. Brilliant as usual LInda. I keep bringing your good clean water to my personal horses but for one reason or another they won’t drink it – prefer high fructose corn syrup I guess.

  4. Great article, you’re ‘right on it’ again : ) very interesting links too, Thanks.

    Personally it’s kind of ‘scary’ reading all these symptoms that I realize I suffer from and that have taken over my life, but ‘recognition’ of just HOW disabling this can be is essential to prevent further damage (environmental control) and ‘remove the source’ (detox, chelation protocol, etc.) while supporting and ‘restoring body systems and functions’ so we can regain our lives, jobs, friends and family, etc.

    As you say, we try to put on this strong and happy face to others (mostly to avoid them suffering too or not to ‘scare them off’ or because we are still in denial ourselves) and most of the suffering and pain we keep to ourselves (no-one really wants to hear about how ill you really are, we know how that goes!) because that’s what seems to be ‘expected’ of us and for fear of being ‘ridiculed’ or told we are ‘being negative’ or ‘it’s all in our heads’ or that we just need to be more positive and ‘believe we are ok’ : (
    and that everyone has health problems to deal with (as if we did’nt know or care, or that we believe MCS/EI to be worse than their illness) : (

    When I have suffered from mild/moderate MCS/ES I didn’t even know what MCS was nor that this was what was causing my symptoms. I wish I had!!!
    I truely believe I would have never developed this severe/disabling MCS had I been properly informed. I could have avoided the crucial over-exposure to the Mercury and other heavy metals in dental treatments (uninformed consent) that have brought on this Severe/Disabling MCS/ES, I’m sure!
    P.D.
    great video on EHS too, Thnks Wilma : )

    • I was lucky that at a certain point I knew what was happening, but circumstances totally beyond my control (things other people do) and a lack of access to health care and a healthy environment that I had more control over meant that I ended up with severe/disabling MCS/ES…

      Too many people share the same story. And children are being born with allergies and life altering “sensitivities” to pollution now! Prevention could save so many lives!

  5. Great post as usual! I am reading a book about Lyme disease by Dr. Richard Horowitz, the most famous Lyme doctor, and he devotes two chapters to Lyme and environmental toxins. Lots of overlap of symptoms, and environmental toxins worsen Lyme. He talks about brain inflammation, cytokines, microglia, and all this stuff I am
    Just trying (and failing) to understand.

    • I’m also going to explore neuro-lyme…

      The brain is a fascinating and very complex piece of equipment! Sadly mine became injured in ways that make it difficult for me to study neuroscience in the ways I really want to (I posted about a free brain facts primer a while ago, that I still haven’t been able to delve into), but way back when, after seeing documentaries about people with brain injuries and autism, a few lightbulbs went off for me, and the more I explored brain injuries, the more I understood what was going on in my own brain and body.

      I’ve also had some posts on neurotoxicity in the works for what seems like years (maybe because I was exploring it years ago) and how all of the MCS/ES neuro symptoms are recognized as legit when they happen to those who “abuse” inhalants or suffer a larger exposure to poison, yet when we are forced to breathe them in from everyday products, the same reproducible symptoms are suddenly just our imaginations? Symptoms we had never heard or read about before experiencing them countless times? That’s just messed up!

      And there is evidence to suggest that mold has become more toxic due to the synthetic man-made chemicals, and it does grow faster when exposed to EMF/EMR, and other bacteria are also altered by toxic exposures, etc etc…

      So let’s just finally admit that toxic chemicals are bad for everyone’s health and get them out of everyday products and materials, where industrial waste does not belong!!!

  6. A ton of good information.

  7. The phenomenology of multiple chemical sensitivity at four levels of severity. In P. Gibson (Chair). Multiple Chemical Sensitivity: An Emerging Social, Environmental and Medical Issue. Symposium delivered at the 105th Annual Convention of the American Psychological Association, August 15-19, Chicago, IL.
    Gibson, P. R., Rice, V. M., Dowling, E., Stables, D. B., & Keens, M. (l997, August)
    http://www.mcsresearch.net/Conferencepapers/phenomenology.pdf

  8. Very comprehensive and usefull information here! Thanks Linda♡
    Hi Miss Diagnoses♡,
    Apart from causing MCS/EI (bodys defensive alert system) etc… persistent toxins that we are inadvertantly exposed to kill our metabolic and immune response so bacterial, viral fungal and parasite infections proliferate where otherwise they would be supressed by a ‘healthy and full functioning’ immune system. Nothing too dificult to understand, They say MCS compares to AIDS for this same reason. It’s easier to wait until these ‘intoxications’ produce some sort of illness that doctors have been trained to treat (and industry can profit by) unfortunately, than admit to and ‘remove’ the ‘obvious underlying causes’of these diseases. They make simple things ‘difficult to understand so we don’t see the ‘truth’ glaring at us! : (

    Big REIKI hugs to you all♡♡♡

  9. Pingback: MCS/ES Symptoms | Seriously "Sensitive" to Pollution

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