Update, May 2022:
I went back to re-read this post and wow, things are so different now! I’m honestly doing okay. I was tempted to delete this post, cause it’s kind of negative, but I decided to leave it up just in case it’s helpful for anyone to read what I went through.
If anyone’s wondering, this can get better! I’m about 90% of the way into remission now– you can read all about how I’m doing now on my site Mast Cell Healing.
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Original post:
If you follow my Facebook page, you may have already seen the news…
Yesterday I was diagnosed with something called mast cell activation syndrome.
It’s taken me a long time to figure out what’s been going on. It all started with a severe allergic reaction back in August.
Unlike most people who experience a severe allergic reaction and then (assuming, hopefully, they were able to get the proper treatment in time) recover from that one episode, for me, that incident seems to have set off a chain reaction where my body is becoming more sensitive to triggers, over time.
It’s kind of similar to central sensitization, actually. Both our nervous system’s ability to send pain signals, and our immune system’s chemical messengers, are there to protect us.
However, in both cases, the two processes have gone overboard. In central sensitization, the nervous system becomes more “effective” at sensing pain.
And in what I have, mast cell activation syndrome, my body’s mast cells, which I need to release histamine during an allergic reaction, are not able to calm down afterwards.
I’m still learning about this condition — I went to see the specialist yesterday hoping to find out I didn’t have it.
But I do. The more I read about, and patient stories I hear, the more I know I do.
Essentially, my mast cells are still releasing high levels of histamine, even though the initial reaction that triggered them was over a month ago.
Having high levels of histamine can trigger a wide range of symptoms. The more minor are itchy skin and rashes. At the other end of the spectrum are all of the symptoms of a severe allergic reaction, including airway swelling and a dangerous drop in blood pressure (these life-threatening symptoms are part of an extreme reaction called anaphylaxis).
I now have an epipen which I expect I’ll have to carry with me everywhere for the rest of my life. I guess it’s similar to living with a food allergy — except, to my knowledge, I don’t have any food allergies.
MCAS is scary in it’s own right, though, because the triggers can be impossible to predict. The same thing can be fine one day, and trigger a reaction the next.
From the reading I’ve done so far, it seems like many sufferers have to keep a running tally of all the activities they perform, and foods they eat, which could cause a rise in histamine levels. It’s possible that although a food or activity on it’s own could be benign, if you add them together the body reacts.
That’s another thing. Intuitively, I had decided not to exercise at all since this happened. I’d learned, when I considered allergy shots last year, that exercise can trigger anaphylaxis.
The new allergist I saw yesterday confirmed that my hunch was correct, and asked me to continue not exercising for the time being (we’ll see what kind of effect this has on my SI joints!).
As devastated as I am to receive this diagnosis, at least the doctor yesterday validated much of my experience.
I had known, instinctively, that my body just needs to calm down right now. That I shouldn’t exercise, and that I need to avoid contact with my allergens.
I have certainly had emergency room staff be rude to me when they didn’t understand my symptoms.
I told my new allergist yesterday about some of the things people had said, and she rolled her eyes and said “That’s so stupid.”
So… I’m not happy to receive this diagnosis. But… the problem was already happening. At least now I know what it is. My allergist thinks MCAS is behind many of the extreme allergies I’ve had, even before this, and I think she is probably right.
So… it is life-threatening. The degree to which it will impact my life, on a day to day basis, is still unknown.
Anyone who knows my story knows I really, really didn’t need one more complex health issue to write about.
But I’ll do what I always do. Keep researching, keep writing, and keep moving forward.
I hope you are all doing well.
For more on MCAS:
https://www.healthline.com/health/mast-cell-activation-syndrome
https://www.mastcellaction.org/about-mcas
https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/
Invisibly Me
September 26, 2018 at 7:04 amOh no, I’m so sorry you’ve got something else to add to your list, Christy! I’m sure I’ve heard of mast cell activation syndrome before, but knew nothing about it until your post. It’s early days for you with learning more about it, but I’m glad at least it’s been picked up and you have an epipen and knew a little about what’s going on. Is this a life-long condition now? Or is it something that could, potentially, settle over time, even if that’s years? I’m just so sorry you’ve got this to deal with as well, please try to be extra kind to yourself and as the doctors have ordered, rest and go easy for the time being. Sending hugs ♥
Caz xx
Sunlight in Winter
September 27, 2018 at 10:04 pmThanks so much Caz 🙂 I just met with my allergist again this week and it seems like I might have misunderstood her. I guess she’s still not positive that I have MCAS after all. I definitely have some of the symptoms but I guess she wants to see what my test results are, how things change over time, and if I respond positively to treatment (that’s actually one of the things that goes into the diagnosis). I’m not quite sure why I misunderstood her, but I think it’s because at our first appointment, she said that even if my test results come out normal… it doesn’t rule MCAS out, either. So confusing.
But, to answer your question… my understanding after talking to people that have it is that, with the right treatment plan, it can calm down over time, but never totally goes away. It seems that people can dramatically improve their quality life with medication and also by actively managing their histamine levels (eating a low histamine diet, and being careful with stress and exercise, which can also release histamine). Other people never seem to have as much luck managing their symptoms, unfortunately.
I guess time will tell for me. I’ll be sure to keep everyone posted!
Invisibly Me
September 26, 2018 at 7:04 amOh no, I’m so sorry you’ve got something else to add to your list, Christy! I’m sure I’ve heard of mast cell activation syndrome before, but knew nothing about it until your post. It’s early days for you with learning more about it, but I’m glad at least it’s been picked up and you have an epipen and knew a little about what’s going on. Is this a life-long condition now? Or is it something that could, potentially, settle over time, even if that’s years? I’m just so sorry you’ve got this to deal with as well, please try to be extra kind to yourself and as the doctors have ordered, rest and go easy for the time being. Sending hugs ♥
Caz xx
Sunlight in Winter
September 27, 2018 at 10:04 pmThanks so much Caz 🙂 I just met with my allergist again this week and it seems like I might have misunderstood her. I guess she’s still not positive that I have MCAS after all. I definitely have some of the symptoms but I guess she wants to see what my test results are, how things change over time, and if I respond positively to treatment (that’s actually one of the things that goes into the diagnosis). I’m not quite sure why I misunderstood her, but I think it’s because at our first appointment, she said that even if my test results come out normal… it doesn’t rule MCAS out, either. So confusing.
But, to answer your question… my understanding after talking to people that have it is that, with the right treatment plan, it can calm down over time, but never totally goes away. It seems that people can dramatically improve their quality life with medication and also by actively managing their histamine levels (eating a low histamine diet, and being careful with stress and exercise, which can also release histamine). Other people never seem to have as much luck managing their symptoms, unfortunately.
I guess time will tell for me. I’ll be sure to keep everyone posted!
Invisibly Me
September 29, 2018 at 3:36 pmI think that’s a problem with so many conditions, that tests are often inconclusive because a false reading doesn’t mean you don’t have the condition. Either way, your specialist is on it and I’ll be keeping my fingers crossed for you because regardless of what’s ‘diagnosed’, you’ll get some pointers in terms of where to go from here and how to manage the symptoms you have. Yes, please do keep us posted! xxxx
Invisibly Me
September 29, 2018 at 3:36 pmI think that’s a problem with so many conditions, that tests are often inconclusive because a false reading doesn’t mean you don’t have the condition. Either way, your specialist is on it and I’ll be keeping my fingers crossed for you because regardless of what’s ‘diagnosed’, you’ll get some pointers in terms of where to go from here and how to manage the symptoms you have. Yes, please do keep us posted! xxxx