Stress Management & The MCS Paradox… What the Hist? Part 5
The Basics
-Multiple Chemics Sensitivity or MCS is a disease that causes a wide range of symptoms in reaction to low level exposure to many chemicals including headache, fatigue, dizziness, nausea, congestion, itching, sneezing, sore throat, chest pain, changes in heart rhythm, breathing problems, muscle pain or stiffness, skin rash, diarrhea, bloating, gas, confusion, trouble concentrating, memory problems, and mood changes.
-These symptoms are real, can be severe, and must be accommodated
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The paradox
-MCS causes real physical symptoms when the person is exposed to their trigger
-In double-blinded scientific trials MCS patients often do not react to things they have previously been triggered by and/or only react when they know they have encountered the trigger
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An Incorrect Answer
The reason people with MCS don't react according to their own predictions in blinded trials is often credited by researchers to the illness being psychosomatic (aka they are saying people with MCS are mentally not physically ill)
Yet this does not explain why people developed MCS in the first place, or symptoms like rash, sneezing, congestion and diarrhea which are not very subjective in nature.
The reality is likely more complicated. Here is my theory and why understanding it can help everyone with histamine or environmental sensitivity stay healthier.
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Getting To An Answer
Many if not most people with MCS also have other chronic illnesses & histamine sensitivity.
Histamine reactions can easily be triggered by a vast myriad of foods and chemicals and can cause most of the symptoms people with MCS experience.
Chronic illnesses, particularly the autoimmune diseases that often overlap with MCS are very sensitive to stress.
Histamine reactions can be triggered by stress.
Histamine reactions & chronic illness symptoms can have a significant delay between exposure and reaction.
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A story
Your immune system is somehow disrupted causing intolerance to some list of foods and/or chemicals.
You are exposed to something or many things that trigger a histamine reaction.
You develop symptoms. These symptoms derail your life. The whole experience may be traumatic.
You begin detective work to try to find the cause of your symptoms. You identify a variety of foods and products that seem to line up with your timeline of symptoms.
You remove everything you have identified as a trigger from your life.
You regain some health and feel much better.
When you are exposed to something you identified as a trigger it is very stressful and releases histamine.
Even if you guessed wrong about this trigger and it was not an initial cause of symptoms, you are exposed and you develop symptoms.
Reacting to the item now confirms your belief that it is a trigger for you and that you must continue to avoid it.
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Story Takeaways
-Someone with MCS will almost certainly have some real triggers for chronic illness. These triggers are necessary or else they wouldn't have suddenly developed symptoms. I will call these "primary triggers." These triggers may be intolerances to foods or chemicals or may be trauma, stress, exertion or other things that can cause ME, fibro and other undiagnosed autoimmune disease flares.
-Most people will have a longer list of triggers than their "real" list, because the process of narrowing down what is triggering is so difficult. I will call these wrongfully accused subjects "secondary triggers."
-Once a trigger whether primary or secondary is deeply implanted in someone's brain it creates a feedback loop of stress and histamine.
-Patients do not know what is a primary or secondary trigger. The reason for eliminating the trigger was the same regardless. They had symptoms after exposure so they avoided the substance going forward.
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A Better Answer To The Paradox
So it is not that people with MCS do not have symptoms and triggers. It is that only some of their triggers are the primary triggers and many are secondary triggers. There may also be many very mild primary triggers that are only enough to trigger a reaction when the person already has a lot of histamine and dysfunction in their body.
So when a study is done on patients who have had MCS for a while, lowered their baseline reactivity, and are not aware they are being exposed to one of their triggers they have a good chance of not reacting. Or if they believe the placebo is a trigger they will still experience the same secondary trigger response as to a substance they incorrectly identified as a trigger.
This also explains why studies that have taken measurements of inflammatory markers, histamine, and so on after patients self-report a reaction DO support the patient's physical reaction. Patients have a physical reaction to both things they are intolerant to and things that cause a strong stress response. So from either primary or secondary triggers if the patient knows they are reacting their blood tests will support it.
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What can we learn?
The primary takeaway of the MCS paradox should be the extreme power of stress to worsen histamine reactions.
This is why meditation, therapy, and stress reduction is so incredibly important to treatment of MCS, MCAS, MCAD, histamine intolerance and idiopathic ucarteria.
This is also why simply trying to eliminate all triggers from your life is not a good long-term strategy for healing. While it is often a necessary first step the goal should be to increase your tolerance of exposure, not just decrease exposure. (Remembering that decreasing your exposure to what you can control will increase your tolerance to those outside your control)
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What can we do?
It is important to acknowledge that avoiding triggers is a necessary part of dealing with histamine sensitivity. It is also important to remember that some people's reactions to triggers constitute life-threatening emergencies and it is completely unreasonable to ask these people to work on narrowing down triggers in any way that could threaten their life.
However, whenever possible we should try not to play into stress feedback cycles, and doctors should not stop at advising patients just to cut out anything that triggers them but actually focus on controlling histamine and underlying autoimmune and mast cell dysfunction.
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Multiple Chemical Sensitivity is perhaps the most controversial diagnosis in the mast Cell family. It is often labeled as being completely psychological or a conversion disorder. Yet this fails to explain its physical symptoms, many of which like hives and asthma are not subjective in nature.
There is a clearly visible paradox to MCS and chemical sensitivity more generally. How can it be that these disorders are real AND that in a placebo-controlled study patients failed to react to chemicals?
This post is part 5 of my histamine disorder and mast cell series and uses this paradox to illustrate the difficulties of stress management and trigger identification in MCS and in mast Cell Disease more generally.
The answer to this paradox lies in stress and the histamine bucket Theory. Stress is an extremely powerful trigger for mast Cell Activation. A severe stress event will trigger a mast cell reaction regardless of any other factors. This means that if you expect to react to something and panic you can trigger a real reaction. This is especially true if you have already filled up your histamine bucket with other triggers throughout the day. Stress is often the straw that breaks the camel's back.
It is incredibly difficult to identify triggers correctly. Is it any wonder that most people make mistakes? Or that we simply choose to be safe and avoid chemicals or items we are told are very common triggers?
When we live with diseases where so many everyday items set off symptoms it is rational to avoid the things most likely to trigger us. Yet it is also important that we acknowledge the powerful role of stress and fear in its ability to compound the severity of reactions or cause reactions even in the absence of a primary trigger.
The final post in this series will look at how we can use the scientific method to better identify our primary and secondary triggers and expand our tolerance of this beautiful world we live in.
