A Medical Game Plan

First of all, I want to wish all of my readers who celebrate Easter  a very happy holiday! While I'm Jewish, I know the importance this day holds because I once celebrated with my grandma Hilde. May you all be surrounded by family, friends, laughter, food and many painted eggs today and always.

Secondly, I saw my rheumatologist (Dr. Berman) last Wednesday and mostly it was good news - the first time I've been able to say that in over a year! Overall she was very pleased with the progress I've made on Orencia and it seems I'm finally stable again. Compared to how sick I was when we first met, I must seem like an entirely different person. I'm relieved that she's getting to know the real me. This was the second time she had me fill out the BASDAI Bath Anykylosing Spondylitis Disease Activity Index, a questionnaire that asks patients to rate  their levels of pain, stiffness, and fatigue during the previous week. If you click on that link, you can take the free online questionnaire too. I'm happy that she tracks my symptoms so carefully. It makes me feel cared for and secure in my treatment.

 There is no question that my pain has subsided dramatically in just a few months (it's now anywhere from a 1-4 on the "pain scale", rather than the 7-10 from last fall). I could not be more grateful for this change. However, at this appointment Dr. Berman also definitively diagnosed me with Fibromyalgia, a disorder "characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues." Researchers believe that Fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. During the "Great Flare of 2010" (ha, that has a certain ring to it...), my doctor first suggested that I might have Fibromyalgia. However, since my body was in such an overwhelming state of distress at that time, there was really no telling if the nerve pain would stick around. Unfortunately, it has.


While I'm much better overall,  I'm always sore and often feel as if I both caught the flu and ran a marathon - different pain than the pain I've grown up with. My back, hips, legs, feet, shoulders, neck, face, and hands are always in some state of discomfort and it often hurts to be touched. I can't handle any kind of massage and poor John has had to monitor his hugs for a while now. I'm someone who has always been "good with pain", but there's no question that my pain tolerance has dramatically decreased this past year. For instance, a simple blood test can now cause excruciating pain.  My doctor believes the length and severity of my last flare may have altered my nervous system...hence the Fibromyalgia diagnosis.


Currently I take a laundry list of medications, which is something I'm hoping to change soon. One of them is Zoloft - an anti-depressant I started when things were at their worst. Dr. Berman also suggested switching to a new anti-depressant called Savella, a drug proven to simultaneously treat nerve pain and depression. Two birds with one stone sounds great to me. If Savella has its intended effects, I'll be able to lessen or ideally eliminate any pain medication and anti-inflammatories I take. Apparently it's been completely "life-changing" for some of her patients! I'll keep you posted, but for now it just feels good to have a game plan.                       
                                                      Love,
                                                      Maya