August 7th, 2010

Yesterday I was poked, prodded, electrically shocked and stuck with needles. The neurologist was testing my nerve responses for indication of any damage or pinching that could explain the recent increase in my pain issues and the development of a burning feeling in my hands and feet. He found nothing.

Next stop… brain MRI. It really could be ALL in my head! If he still finds nothing (please refrain from all small or no brain jokes, please) then he passes me along to a rheumatologist and an infectious disease specialist to look at potential autoimmune disorders or viruses. I fit many disease profiles; we have ruled out Lyme and RA, now we have to narrow the field further.

I really like this doctor. He took the time to explain things to me- from the way the tests work to what my options are regardless of what this turns out to be. He openly stated that these other possibilities were not his field and that the other doctors would be better equipped for the next steps should the MRI come out clean. HOWEVER, he discussed his thoughts- I have Epstein Barr virus in my system, which has some recognized link to people developing Chronic Pain Syndrome. My history of painful flares, though never previously on par with my current issues, and fatigue also are good indicators.

CPS is both physiological and psychological. The physical pain feeds mental pain, which feeds physical pain. The doctor has told me that if this is the final diagnosis I would need to take a holistic approach to manage it. I would need to exercise despite the fact that it hurts to move. I would need to do some sort of physical therapy to encourage proper muscle movements and stretches. I would benefit from psychotherapy to deal with my responses to the pain and the way in which pain affects my life as a whole. Massage to relieve tension and stress. Then medication to deal with bad flare-ups and/or inflammation.

I am still hoping that we find some stupid thing causing this that can be fixed permanently. Sadly, as I spoke with the doctor I came to understand that based on my full history and timeline it is far more likely I have some sort of chronic issue and I am just in a bad flare up now. Since I have no real say about it, I guess I am okay with that. I am not okay however with continuing how I am feeling. It is really messing with my brain and my functional abilities. I mean, aching joints are one thing. But feeling like my hands and feet are on fire? Random numbness and sharp pain? Dropping things frequently, having no energy or desire? I am SO not okay with that.

So as I await all of my complete workups (always hoping for the “easy” diagnosis) I am committing to myself that I will do everything I can to manage this starting now. I will not consider a massage a luxury- I will go back to getting them monthly and recognize that it is for my own well-being. I will still enjoy my food but will work towards eating healthier overall- fruits, veggies and the like. I will reduce my intake of sugar and caffeine (reduce, mind you, not eliminate these favorite things). I will take my vitamins every day. I will begin to exercise, slowly at first so that I can ease into it. I will lose weight to put less strain on my body. I will work to reduce stress and I will ask for help doing it. I will take better care of me.

The doctor has given me amitriptylin to help reduce my headaches and potentially lift my mood. It’s an anti-depressant and as we see how I react to it for the head, we may continue to up the dose to a mentally therapeutic level since I am currently unmedicated. As I read the literature, I find it nice to know that if I respond well to it, it is rather a one-stop shop. The drug is used for depression, for sleep assistance, for headaches and for chronic pain issues. That is kind of the big 4 for me, all feeding off each other.

I’m cranky, I hurt and I want to curl up into a little ball and sleep, hiding from the entire world. Only now I see a little light in the tunnel ahead of me. And that IS okay!