Knowing your symptom progression can save a lot of time and energy when you aren’t feeling well. This post outlines the benefits of knowing your symptom progression in a Mast Cell Activation Syndrome (MCAS) Flare.
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Table of Contents
What is MCAS?
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.
MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.
Check out this post on how to manage MCAS.
What is your symptom progression?
I can’t tell you how many times I have been uncomfortable but not realized I was having an MCAS symptom flare until it was well underway. Just today I was experiencing itchiness and it didn’t occur to me that I was having a flare until I went to the bathroom and saw my face in the mirror. My face was flushed bright red, and the itchiness under my arm that I had been scratching for a couple of hours was red and angry looking.
Because facial flushing is usually my first symptom, when I remember to check my face at the onset of anything strange, I am grateful to know what is going on. It doesn’t stop the symptoms, but it gives me the peace of mind that I know where I am in my symptom progression, and I can begin following my rescue plan. Check out this post about Rescue Plans.
What is MCAS?
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.
MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.
Check out this post on how to manage MCAS.
The bucket theory
The bucket theory offers a helpful analogy for understanding symptom reactions with MCAS.
Think of your body as an empty bucket that you want to keep from overflowing. Different foods and activities fill your histamine bucket at different speeds but they combine to form the total level of histamine in your body (how full your bucket is). A fuller bucket means you have more histamine symptoms. When you manage triggers, reduce exposure to known triggers, and take medications and supplements to reduce histamine, you can manage the level of your bucket.
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My classic symptom progression
My symptom flares usually start with facial flushing. I may not even notice that I am flushed unless I look in the mirror, and then I have that “aha!” moment, and I know I am starting to react to something.
Then I will experience prickling/pain sensations on the skin of my limbs spreading to more of my body.
Then, general inflammation increases, and I develop a sense of heaviness in my whole body from excess fluid and stiffness.
Then I begin to experience neurological pain/numbness in my sciatic nerve, which comes in waves at night, waking me up. When they happen during the day they are accompanied by waves of intense heat.
If my symptom flare continues to progress then I will start to have body aches, chills, and flu symptoms. Or they could develop into mental/emotional symptoms of anxiety/panic or depression/overwhelm.
At any time throughout my symptom progression, I may experience insomnia, heart palpitations, GI upset such as bloating, gas, heartburn/reflux, constipation, and a sense of fullness/constriction in my throat with hoarseness.
And if the mast cell flare goes unchecked for a few days then my hair loss dramatically increases, I get migraines of all kinds including ocular and hemiplegic migraines.
You need to know your own symptom progression
Sometimes it is hard to know what is an MCAS symptom, and what is just something weird that you are experiencing. In the beginning, it can be especially hard. I offer my sample progression above as an example of how it could go. But your symptom progression is going to be uniquely yours.
What helped me in the early months of my MCAS diagnosis was to join Facebook groups focused on MCAS and to search for symptoms I was experiencing. I realized that just about any symptom could be related to my MCAS. By reading about other people’s symptoms and what caused them I pieced together my symptom progression.
You are the authority on your symptoms
No matter how wonderful your MCAS physician or functional provider is they are never going to know what it is like to be in your body. So, the more data you can gather about your symptom progression, the better you will be prepared to talk about your symptoms with providers and find solutions to your particular issues.
What do you think?
I’d love your feedback on this post! Please comment below!
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