Undiagnosed, What Do I Do?

IMG_5982I can’t believe the amount of pain I have been in recently. It travels around my body from my knees to my shoulders and back to my ankles. I knew something was wrong so I went to see my doctors and explained my symptoms. The pain on a scale from 1-10 is about 6.5 to 7 so I needed to be proactive.

My doctors ran a series of test, looking for indicators of lupus, fibromyalgia and rheumatoid arthritis. Nothing came back abnormal.  I still have a weird feeling that it could be Sjögren’s syndrome as I display some symptoms and tested positive for a set of antibodies last year and last week. Given the severity of ITP we pushed it aside. Now it seems to be flaring so I need to fix the situation quickly!


I have read a little bit on what life is like as an undiagnosed patient. Now I’m living it. There is no easy way to a diagnosis, you have to go through tests, see doctors and talk about your symptoms. To me, pain in the hardest symptom to discuss. Doctors cannot see pain, which is opposite of what I deal with when I have low platelets. They can see the results on blood work and just by looking at me. Pain and dry mouth are solo-experiences. I can only explain my pain on a scale from 1-10 and say my mouth feels as dry as a desert.

Lucky for me, those SSB antibodies tell a story. I am hopeful that as we bring a rheumatologist on the team, I will be able to sort out the pain. Some days are easier than others. Until then, I remain undiagnosed and frustrated.