The Nocebo Effect as a Mast Cell Trigger?
I have been trying to put together some information on another major trigger for my mastocytosis which has caused me big problems in the past and which have I have been learning to mostly control.
I was very sick for a long time before I was diagnosed, and of course during this time I really suffered from all the kinds of non-specific symptoms which most mast cell patients have. Basically for 8 years I had weight loss, tremors, balance disturbances, tinnitus, diarrhea, dizziness, cognitive problems, anxiety, blurry vision, headaches, muscle pain, joint inflammation, anaphylaxis, gut pain, sleep disturbances, heart rate and blood pressure disturbances, thyroid and adrenal hormone disturbances, etc, etc.
Because no one could diagnose what was wrong with me, I became really anxious about my health, and the sicker I got, the more anxious I was. In retrospect it is clear to me that some of my worsening health had to do with anxiety attacks and gross emotional upset directly triggering my mast cells. But my worry about my health was kind of continuous, and most of the time I was not grossly anxious, but just really involved in trying to rationally figure out what was going on with me.
After I got diagnosed and started having reduced sensitivity to my major triggers (exercise, heat, cold, stress, food allergies), I began to notice that thinking about my health condition really affected the behavior of my mast cells. In order to avoid stress and get control of the mental part of my condition, I had been meditating 2-3 hours per day and playing music a lot of the rest of the time.
Because I knew my health issues were a source of stress, I avoided thinking about them at all for months. I would studiously intervene whenever I started thinking about my health or reading about medical conditions, and turn my mind somewhere else. Of course I was still really diligent about observing all my physical and mental limitations, taking my meds, seeing the doctors, and so forth. I just avoided dealing with all of my health issues for more than a little while every now and then. When I had gross symptoms caused by cold exposure of something I couldn't avoid, I would use meditation, music, or television to just rest in the sick state without wishing it to be otherwise, without thinking about it, and without trying to figure it out.
I began to realize that if I started to get involved in medical considerations and thinking about my condition, even just a little bit, my mast cells instantly became less stable. It wasn't a question of anxiety causing symptoms, but something more subtle. Even having a couple of annual tests (all of which showed major improvement) would be enough to set off a couple of weeks of mild increased mast cell activity.
I had my wife (a molecular biologist) search for a mechanism which could explain this. She came up with some studies on the “nocebo effect”, in which patients believing themselves to be sick (or experiencing or fearing sickness) can make themselves ill. This is the opposite of the placebo effect, and they have recently found a likely mechanism in a hormone called cholecystokinin. If the secretion of this hormone is blocked, patients won't experience the nocebo effect:
My wife did some searches, and found that there is evidence that cholecystokinin might directly trigger mast cell secretions, at least in some animal models:
I thought this was a reach as science, but of course we all need to listen first of all to our conditions in trying to figure out how to manage our masto. I can't think of any disease which is more complex, mysterious, and inscrutable, and which requires more awareness and thought about how to manage it.
But for myself, I have become convinced that, for the most part, I do more harm than good by thinking about it more than is absolutely necessary! And I am convinced that there is a benefit to willfully ignoring the symptoms when I have them.
Header picture attribution : By futureatlas.com (originally posted to Flickr as The end isn't near) [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons