Last Wednesday I had my monthly Orencia infusion and a rheumatology appointment with Dr. Berman. It had been 5 weeks since my last Orencia treatment, and my body was definitely telling me it needed more. Although I've been getting these infusions since last fall, I'm still struck by the strangeness of it all. While I'm hooked up to that IV for hours, I sometimes feel like I'm in some kind video game...namely F-Zero, the 1990 Nintendo Game. It's as if I'm running low on energy units and I'm finally able to recharge my battery (nerd alert!). However I might view it, I'm just thankful for this relief.
Although my pain is much better than last year, it's still there every day. I often say the achiness is like the pain one might feel after running a marathon or catching the flu. The burning "Spondylitis pain" in my ribs, neck, and spine has thankfully settled down and, while the pain is now less intense, it's more widespread. Body parts that never gave me much trouble - my face, arms, hands, shoulders, knees, shins, ankles, feet - are in a constant state of discomfort. The majority of my body hurts to the touch and I'm incredibly stiff, especially after sitting for more than 5 minutes. My fatigue has been pretty overwhelming lately and my mind is just "fuzzy." I'm frequently at a loss for words and, for a writer, that's no small problem.
While my mental state has always impacted my health, it's more apparent than ever. Even the smallest stressors can send me into a flare. For instance, a disagreement with a loved one immediately causes the joints in and around my jaw to lock. My head starts throbbing, and I can feel the pain, stiffness and inflammation spreading throughout my body. It doesn't take long before it feels as if I've been hit by a car! Life is bound to throw many curve balls my way, and I want to feel strong enough to handle them. This level of unpredictability has become anxiety-provoking, and something has to change.
Until recently, I was content with how things were moving along. I'd come to expect a certain level of pain and, as long as I wasn't bedridden, I felt I had little to complain about. But should I settle for this?With my third year of graduate school quickly approaching, an intense internship at a children's hospital, and a wedding in my future, I want more. I want to truly understand my body and predict its reactions to things. Ideally I want to increase my energy level, lessen the discomfort I feel each day, and become more active. These are things I need and deserve. I approached Wednesday's appointment in this mindset and, as a result, I now have more clarity and hope about my health.
But still, the obvious question still remains: what about this pain I'm in? My discomfort may be more tolerable, but it's constant. Although Dr. Berman reminds me (a bit too often) that I have a chronic illness and wont ever feel "perfect", I'm not willing to just accept that fact. I'm still in significant pain and, if my Spondylitis is controlled, shouldn't we be focusing on Fibromyalgia? I asked Dr. Berman for help understanding the nature of Fibromylagia - a disease that no medical professional has ever taken the time to explain. I told her that, at this point, it's very difficult for me to identify what is "Spondylitis pain" and what is "Fibro pain." I'm glad I pursued this line of thinking because, as she examined me, she found that I had 15 of 18 Fibromyalgia "tender points". As she touched each one, I nearly jumped off of the table! For once, the diagnosis of Fibromyalgia was clear and definite. Essentially, after enduring such a long, uninterrupted period of pain, my nervous system is in "over- drive." It's not fun, but it makes sense. My pain tolerance is lower than ever before and every sensation - a hot bowl, a blood test, my Bernese Mountain Dog stepping on my toe- is shockingly painful.
To sum things up...
The not-so-good news: My Fibromyalgia diagnosis is definitive and the disorder is active.
The good news: Thanks to a combination of Orencia, pain medication, and a gluten-free diet, my Spondylitis is officially controlled. I can't remember the last time I was able to say that! Since I've only ever treated this condition, I have no idea how Fibromyalgia medication could change things for me. It stands to reason that if my Fibromyalgia developed from uncontrolled pain, perhaps it could dissipate (even disappear?) if my pain relief is maintained. The next step is to meet with a psychiatrist who will switch me from Zoloft to Savella - a medication that double as an anti-depressant and a Fibromyalgia treatment. I'm feeling quite hopeful about this step, and who knows - the difference in my quality of life could be tremendous!