Keeping a Pain Journal

After the second visit to the ER, I started keeping a “pain journal”.  It was nothing fancy, just a little notebook to scribble in when I had pain, symptoms, doctor appointments, or anything else that I thought might be relevant.   

I still have it; it’s been packed away in the back of the closet in a giant manila envelope labeled Medical Records.  I pulled it out today, for reference, to make sure I’m remembering the facts right before I write.  

It’s painful to read.  I was in so much pain (and desperate for answers).

After the first visit to the ER, my symptoms improved slowly in the days and weeks following.   It took a full week for me to eat a regular meal.  The nausea subsided that first week, but the abdominal cramps continued long after, and never completely disappeared.  I randomly had stabs or rolling pain through my lower gut.  I felt full all the time, and my digestion was disrupted – which had never been a problem for me before.   It was obvious to me that my body wasn’t happy, but I didn’t know why.

But life goes on, right?  The doctors couldn’t find anything, so I thought that meant I was ok.  The metal spacer in my mouth didn’t need much maintenance; it mostly just stayed in place for four months.   It had a little screw that needed to be turned to increase the space a millimeter at a time, and then it just sat in place forcing my teeth to adjust to the new position.  During this time, I had pain, but it was mostly just a nuisance.  I remember telling a friend that I just hadn’t felt “right” since the ER incident, but I couldn’t quite figure out why.  I’d be sure to mention it at my next check-up. 

Unfortunately, I found myself in the emergency room again before that happened.   The symptoms were the same as before.  I recorded the pain level as a 9 out of 10 at the time.  Waves of cramps moved through my entire abdomen.  I was nauseous and the pain made me cry.  I was not, before this, much of a crier.  In fact, at the time, I don’t think my husband had ever seen me cry.  Now I had cried twice.  This stuff was BAD.  The ER visit ran the same course – IV, meds, tests, no results.  They sent me home with pain meds and told me to call my regular doctor. 

That night I realized I should be worried, and I started a medical journal.  I carried it with me to every doctor appointment; I re-read entries when I was feeling better; I looked for clues; I used it as proof when certain doctors tried to tell me “it was all in my head” (more on that later).  Eventually I even made charts and graphs, trying to find any pattern that might hint at what the cause was to my illness.

I highly recommend keeping a journal to anyone with any sort of medical mystery.  It’s amazing what you can find out when it’s in black and white.  Our memory isn’t always the best when we’re in pain, so writing it down helps keep track of the details.  Write everything down, and take it with you to your doctor visits.  Be brutally honest – sometimes we tend to exaggerate when we’re forced to rely on memory (“Oh, it wasn’t that bad”, or “It was the worst pain of my life!”), but if you keep a daily journal, there’s an honest opinion of the pain or the days or the symptoms from the moment when it was happening.  Keeping a journal eventually helped me to confirm that my issues were being caused by my braces.