Monthly Archives: July 2016

A Painful Mistake

pillsI was in excruciating pain this week. Horrible, horrible pain. And coming from someone who lives in pain every day of my life, this was bad.

Day 1: I woke to a dull pain in my lower back. As I got up and moved around, my waistband brushed against my skin. The sensation burnt like prickly hot fire and I realized it was nerve pain. Crud. By the afternoon the pain had crept up to the middle of my back and wrapped around my sides, as doubt crept into my brain.

As someone living with cervical dystonia, my daily itinerary includes navigating a list of reasons for my pain to discern how to treat my pain of the day. At first, I attributed the pain to increasing the duration of my daily workout to train for an upcoming 5K. Or maybe my old Select Comfort mattress had lost a little air. Simple things like these that would only slightly affect the majority of you, can cause enough pain to destroy my day.

Day 2: The pain had crept up to my shoulders. My back felt like I had laid across a hot burner and forgotten myself there. I was so sure my bra was slicing into my skin, I expected warm blood to drip down my back at any moment. I worried this might be Shingles except it was not isolated to one side. Pain meds did nothing and ice kept me under my breaking point. Nausea from the pain came and went in quick waves. By the time I realized it was time to visit my neurologist, his office was closed. I was not about to go to the hospital or urgent care. ERs and urgent cares, don’t understand dystonia.

Day 3: The nerve pain was replaced with muscle spasms throughout my entire back. I welcomed this new pain. It was still excruciating but so much better than nerve pain. Day 3 was when I put everything together.

Let me show you another timeline:                                                                                                   

Early June: I was ready to be in dystonia remission for the summer!!! As a teacher, summer means I am no longer bound to the monotonous movements that trigger my cervical dystonia the rest of the school year. I can move at a slower pace and the warmth of the sun works wonders for my muscles. I can wean myself off high levels of Valium. (The drug that has proven most effective in managing my dystonia symptoms.)

I take between 11 to 17 mg of Valium every day during the school year. I am to have a constant stream of the drug in my system at all times. Unfortunately, the side effects are massive. And long term use has the high potential of causing permanent damage to my body. For the last couple of summers, I have weaned myself down to 9 mg a day and felt great. This year I weaned down to 7 mg, leaving an afternoon gap in the stream of Valium in my body. Huge mistake.

A week ago Saturday (Late July): I ran out of my 5 mg tablet I take at night. This would be a huge crisis that I would have avoided if it were not summer. Instead, I emailed for a refill and took two of my 2mg tablets, taking my total daily dose down to 6 mg of Valium. My lowest dose in years.

Last Tuesday: Worst. Back. Pain. Ever.

I almost made it to August before having major repercussions from a way too low dose of Valium. A little more than a week has passed since I mindlessly thought to swap out a 5 mg pill for 4 mg. A difference of 1 mg. 1 mg! I still have a dull pain in my lower back that comes and goes. It may take a while to get back to normal.

This is not a mistake I will make again.

Current score: Cervical dystonia– 5,347    Me– 3,196