Chapters

It became clear to me in April that the Plaquenil was working. From December to March, I was basically bed-bound 1-2 days before my cycle started. In April and May, I was tired but not useless during that time. All last fall and through the winter, every cold required several days working from home and made it difficult to care for my kids. I caught a cold in April, a crummy one that held on for a couple of weeks and involved lots of coughing, yet I was not so fatigued that I could not drive to work or pick up my kids. Not only were my worsts not so bad, my daily baseline was inching up--I could get things done around the house in the evenings and weekends.

I had my neuro appointment on Tuesday. You may recall that I called the neurology clinic in February for an appointment, and it was scheduled for April. The April one was cancelled when the resident scheduled had her baby, and the next available was June. This time, I was in with a faculty member. He was polite enough. He did a thorough patient interview, did a sufficient exam, and told me there was nothing seriously wrong with me. He, too, refuted the biopsy results. I was calm and satisfied with his efforts, ready to return to rheumatology and never to see neurology again when he said, "I can diagnose you with fibromyalgia if you want, and we can give you medicine for that." He started talking about the connection between mood, pain, and sleep, even though my complaint of pain is secondary to my weakness, and I have no mood or sleep problems. "Seven out of ten internists would diagnose you with fibromyalgia," he continued. When I suggested that my symptoms didn't even come close to meeting the diagnostic criteria, he muttered something about it depending on what criteria were used. I was thinking the American College of Rheumatology's criteria might be the gold standard, but what do I know?

I honestly, genuinely resent it being suggested by neurology that I have fibromyalgia. It's their "go away" diagnosis for someone like me, and it makes it even more difficult for people who do have fibromyalgia to be taken seriously and treated appropriately. Muscle weakness is not the same as fatigue. Joint pain and swelling is not the same as point tenderness. It does a huge disservice to the people with fibromyalgia to get junk cases like mine thrown into their diagnosis.

Fortunately, my follow-up appointment with the R2: The Really Great Rheum was also on Tuesday. I like her a great deal, even though she's asking me to give up ice cold beer and margaritas just as the summer is starting. I'm starting methotrexate this week, and she's giving me a paperwork diagnosis of "seronegative rheumatoid arthritis" in order to get me the drug. It's hard on the body: taking out cells with fast turnover like mucosal cells and immune cells. The goal is to knock out just enough immune cells to teach the bad, overactive ones a lesson. I'll have to get blood work every two weeks for a few rounds and then switch to every six weeks. My liver and my blood counts are both to be watched very, very carefully.

I have to give up all alcohol.

I might lose even more hair.

I just might start to feel normal again.