Darilyn’s Journey
Diagnosed with Fibromyalgia in 1985 after the birth of my second daughter, I had learned to balance my life so that my condition was manageable. I returned to work as an R.N. when my girls were young teenagers and for the first few years this was great for me as it allowed me the mental stimulation I needed and to get paid for doing what I loved to do…take care of patients! Then one by one, I started to have little health problems. First it was migraines and then irritable bowel syndrome. Then my tongue started to act weird and the ENT diagnosed it as geographic tongue. On a vacation at the beach, I discovered that my toes were turning blue and white and I simply could not tolerate the chill in the air. Then one day my heart was racing and having premature ventricular contractions. I sat on the exam table one visit chatting with my Internist when I finally asked, “How do we know there isn’t something more going on than just the fibromyalgia?” He sat my chart down and looked at me with a serious expression and decided then to send me to the Rheumatologist for a thorough work-up.
The Rheumatologist diagnosed a connective tissue disease in 2008 based on my history and lab results. He explained to me about overlapping conditions, symptoms and how best to treat this initial stage of my disease process. My story gets a little more complicated here but I didn’t know this at the time. On all of my paperwork, my internist had used Mixed Connective Tissue Disease as my diagnosis. It wasn’t until both my Internist and Rheumatologist retired in 2013 that I discovered a little snafu. In the original consult, the Rheumatologist wrote “mild connective tissue disease” and my Internist picked it up as “mixed connective tissue disease” and continued to use that diagnosis. I was in the middle of applying for disability and was reviewing all of these records for that purpose when I came upon this information. After consulting with my new Rheumatologist, I discovered that I do not have elevated RNP antibodies and therefore actually have Undifferentiated Connective Tissue Disease.
How does this impact me today? Not in the least. The symptoms are essentially the same. The treatment is essentially the same. The impact on my social life is essentially the same. The impact on my career and finances is essentially the same. Like all others, I watch and wait to see which of the connective tissue diseases I might be diagnosed with tomorrow or ten years from now. Some of those may be more or less serious than others but we are all looking at the same crystal ball hoping for answers. So in the long run, what is in a name and what are a few RNP antibodies between friends?
Problem List:
UCTD
Fibromyalgia
Sleep Apnea
Restless Leg Syndrome
Hashimoto’s Thyroiditis
Thyroid tumors
Celiac Disease
Migraine Headaches
Raynaud’s Syndrome
S/P Hysterectomy 1991
S/P Mal de Debarquement 2010
S/P C5-6 fusion 2011
S/P Lyme Disease (acute, rash & illness) 2011
S/P Arthroscopic Knee Repair Left 1998, Right 2012