Mast Cell Activation Syndrome and Its Absurd Personal Impact

I was diagnosed with Mast Cell Activation Syndrome (MCAS) in June of 2017. It explains the symptoms I’ve had for over 20 years. It was a wonderful feeling to have a doctor tell me that all of these things weren’t all in my head or because I’m fat. I’ve heard that many times over the years. I started having many of the symptoms before I gained all this weight. In fact, my weight gain likely a result of a combination of my medical conditions, not the other way around. Take that fat shamers.

To begin – mast cells are a long-lived cell that is in your tissues that mount a defense against infections and other harmful substances. They are found in the gastrointestinal tract, skin, and respiratory tract, as well as around blood vessels. Mast cells are major factors in the inflammatory response as they can be activated to release a wide variety of mediators, by many different antigens including allergens, pathogens, and physiological substances. They come from the bone marrow – immature – and mature in the tissue they are drawn into.

Symptoms of Mast Cell Activation Syndrome:

• Skin
  • Hives (urticaria)
  • Itching
  • Flushing
  • Itching/swelling of the lips/mouth/tongue
• Airway
  • Tightening/Swelling throat
  • Chest tightness
  • Wheezing
  • Can’t take a deep breath
• Gastrointestinal Tract
  • Nausea
  • Vomiting
  • Cramping
  • Abdominal Pain
  • Diarrhea
• Brain
  • Sense of uneasiness
  • Headache/migraines
  • Dizziness
  • Confusion
  • Tunnel Vision
• Heart
  • Blood pressure
  • Chest pain
  • Tachycardia
  • Palpitations
  • Weak pulse
  • Fainting
  • Dizziness
• Genito-urinary Tract
  • Uterine Cramping
  • Swelling of labia

As you can see, MCAS affects all body systems. It can make you miserable. I take 2 antihistamines, another antihistamine that also is a mast cell stabilizer, a leukotriene inhibitor, an antidepressant that also has antihistamine properties (I take it only for MCAS, not for its antidepressant purposes), an h2-blocker, and Vitamin C (it has mast cell stabilizing properties) to help control my symptoms. This doesn’t include other medications for other disorders either!

These medications only manage my symptoms, I have symptoms most days despite all these medications. If I go through the household cleaning aisle I have a major MCAS reaction and have to take other medications on top of this. These reactions include my getting very lightheaded, flushing, nauseated and other GI upsets. I start sweating profusely and sometimes have to find someplace to sit down. It also triggers POTS flareups too. I’m sure one of these times I’m going to full-on pass out.

I have issues being out in the sun much at all. It makes my skin feel like it’s crawling. I burn pretty quickly. Even on cool days, the heat of the direct sun on my skin triggers POTS and MCAS symptoms. So I make liberal use of sunscreen.

Also, I’ve decided to try UV protective clothing to see how I did with that. I came upon Supershu UV Protection Cooling Arm Sleeves UPF 50. Right now they’re only $6.99 and are Prime eligible. I must say, I’m impressed. I wore them doing a little bit of work outside yesterday and I should have been a little red without sunscreen and these did protect my arms.

And when they say cooling, they are not lying about that either. As soon as you put them on, you can feel an immediate difference. Normally when I put anything on that is tight-fitting, I am warm immediately. With these, there was a nice cooling sensation. My only complaints are that they are white and there is the word FASHION printed on the back of the wrists. Also, because I have batwing arms (think about the teacher in Monkey Bone LOL) they fit rather tightly around the upper arm. Overall though, I’d give them a 4 out of 5 stars.

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