R51 I can’t do any kind of activity that heats my body up. Whether it’s outdoor heat or exercise, when I heat up, my body dumps histamine and I go into anaphylactic shock. It always happens the same way: my skin itches, my nose runs, my vision gets blurry and I get light headed. Then my arms and legs turn bright red (flushing) and then I break out into hives. I start to cough as my throat becomes inflamed. Sometimes I have Parkinson’s-like tremors when I am very hot, and I literally shake uncontrollably as if I am having a seizure until my body cools down.
I have made the mistake many times now of going many months of feeling well and being frustrated that I can’t exercise, and so I just do it. Most recently was what I described above. The reason I did the non-cardio exercises is because of the anaphylactic reactions I have when I do cardio.
A year ago last spring, I had been feeling really well for many months, and I thought fuck it, this is insane not to be able to move, and I went down to the gym in my office building and got on the elliptical machine. I would exercise moderately, I thought. First sign of an allergic reaction and I will stop. Around 12-15 minutes I was itching and my arms were red. I kept going a couple of minutes and my left arm inflated like a balloon. It just blew up like an overstuffed sausage. It freaked me out. I went back down the next night and that didn’t happen as quickly and I just kept going because it felt so good to exercise. After around 20 minutes, hives all over, I was coughing and wheezing and then my left arm again blew up so much that the skin hurt from being stretched and I could barely bend my arm at the elbow. I emailed a picture to my doctor and she said it was probably a histamine reaction but was not sure and to go to the ER or call 911 if I can’t breathe.
The allergic reaction goes down after 30-90 minutes. But every time I have made this mistake of exercising again, this sort of thing happens and then within a day or two I feel like I have been hit by a bus and my body is in excruciating pain for weeks to months afterward. My whole left upper side (neck, shoulder, arm, chest, jaw) has been killing me for over a month now. Anyone would naturally think it’s because of an injury from weight bearing exercises but the exact same thing happens when I only use an elliptical machine for 20 minutes.
The cardiologist I just consulted with seemed familiar with mast cell disorders and she nodded when I told her my doctor said the arm swelling was a histamine reaction. She said that is likely and that mast cell disorder symptoms are very variable and it’s always hard to know—but she said, as did my doctor when I saw her last month, that the swelling only on the left side is unusual and concerning and she wants a CT of my blood and lymph vessels to check for some kind of blockage that is preventing lymph drainage.
So that is where I am now. Aerobic exercise is out of the question, and I can’t even fucking walk around outside until it cools off. It has been over 90 degrees outside almost every day since May, and I am stuck inside my apartment in the AC because as insane as it sounds (Trust me, even though this is my life it is hard for me to believe.), I am allergic to heat and exercise and can’t even go for a goddamned walk outside during the summer without risking my health.