After publishing “A Personal Experience with Chronic Pain” I received many helpful tips in the comment area on how to deal with my pain. So, I decided to start a log and do some personal experiments to see if any kinds of foods triggered my episodes, or flares. I took my lead from the comments area of my article and went from there. I’m hoping to establish causation for my episodes and eventually take that back to my doctor, who seems to have given up on me or just doesn’t care. With what I’m learning about myself and my condition I hope to get a diagnosis and some treatment.

I started with tomatoes. Someone suggested that too many tomatoes in my diet can contribute to my episodes and I thought that to be plausible. I love tomatoes, tomato sauce, pizza sauce, and salsa. I have been heard to say tomatoes are fruits of the gods. So, I went out into my garden and picked the biggest, reddest one I could find. Thankfully it didn’t seem to effect my pain or energy levels. That was definitely good news.

So then I tried processed (white) sugar. I ate some jam on wheat bread and experienced a small episode. I realized that one of the foods on my list was bleached flour and thought maybe there was some of that in my bread. So, I tried a chocolate bar. Nothing. Whew. Then, to be certain, I drank a regular Pepsi, which used to be my favorite soda. I immediately felt fatigued and my skin started burning. That’s how an episode starts for me. Before long I was lying down, trying to recuperate. It wasn’t a horrible episode, but it was enough. No more processed sugar for me.

My final test, for now, was with bleached (white) flour. From my experience with the sugar, I decided to go straight to the source. I didn’t have any white bread in the house and flour is bleh. So, I opened a box of Ritz crackers, my absolute favorite, and took out a sleeve. I ate the entire thing. It was wonderful, until my body started to digest all that flour. I was immediately thrown into one of the worst episodes I’d ever experienced. My body bypassed all of the usual warning signs. I was engulfed in pain, from head to toe, and my body was too tired to even sit up. I had to lie down. It was horrible. I felt like I was fighting for my life. My three year-old was upset because I couldn’t even bear for her to touch me. I went in and out of sleep. I don’t remember how long that episode lasted, but it was a while. Thinking back, I wish someone else had been here with me so that they could take me to the emergency room. I’m sure they would have found out what’s wrong with me then. They would have seen how horrible my condition can be. Alas, I suffered alone. And I’m not brave enough to repeat that phase of my experiment even with someone here to help me.

So, some of the things that throw me into episodes are:

• The sun
• White Flour
• Stress
• Lack of sleep

Hopefully when I find a new doctor and take this to him or her I’ll finally get some answers.

I hope that by conducting these completely non-scientific experiments on myself, I’ve helped someone else find their own diagnosis. Living with chronic illness is hard, but not knowing what the illness is is excruciating.