4 ms·

I agree you do not have CFS. >I still haven't figured out source of the fatigue (potentially MCAS?). MCAS is easy to self-diagnose or at least it was in my ca

I agree you do not have CFS. >I still haven't figured out source of the fatigue (potentially MCAS?). MCAS is easy to self-diagnose or at least it was in my case. Mast-cell symptoms are triggered by exercise, sun exposure, orgasms and having the connective tissue in your abdomen jiggled (e.g., by riding in a bus with bad suspension along a road with many potholes). For me it is always the same symptoms (fatigue, maybe irritability, maybe a feeling of heat on the skin) regardless of the trigger. Sometimes exposure to one of these things is not enough to trigger symptoms, but then a second exposure before the body has had time to recover from the first exposure will trigger symptoms. Also (after you remove yourself from any triggers) if the symptoms ameliorate slowly but surely over a period of 2 to 4 hours, that is a pretty strong sign that that the symptoms were caused by mast-cell "granulation" (activation) or at least it is a strong sign in my personal case: I have other chronic conditions that can cause similar symptoms, but if one of the other conditions causes a bout of fatigue or inability to stay productive, the severity of the symptoms will increase and decrease in chaotic or unpredictable ways.

smj-edison 1y ago
Hmm, that doesn't line up with what I've read... Dr. Afrin talks about how MCAS is a lifelong issue that only gets worse later on. Things like a history of bloody noses, strange allergic reactions (random hives or asthma), ear infections as a child, etc. According to him, there should also be at least a couple of active symptoms, such as alternating diarrhea/constipation, edema, skin rashes or hives, foods that are high in histamine, pain while urinating, a constant feeling of being cold, hot flashes, and some others. He also encourages exercise as it helps regulate the immune system. I certainly don't mean to invalidate your own experience—I know how hard it can be to not be understood—but perhaps there's something else that would explain it better? I'm happy to be corrected :)

smj-edison 1y ago

Hmm, that doesn't line up with what I've read... Dr. Afrin talks about how MCAS is a lifelong issue that only gets worse later on. Things like a history of bloody noses, strange allergic reactions (random hives or asthma), ear infections as a child, etc. According to him, there should also be at least a couple of active symptoms, such as alternating diarrhea/constipation, edema, skin rashes or hives, foods that are high in histamine, pain while urinating, a constant feeling of being cold, hot flashes, and some others. He also encourages exercise as it helps regulate the immune system. I certainly don't mean to invalidate your own experience—I know how hard it can be to not be understood—but perhaps there's something else that would explain it better? I'm happy to be corrected :)