I haven't written in a while. I hope everyone is well. I guess this is mostly a ranting message. Just frustrated. But, if anyone has any thoughts about
anything please definitely share!!
I've been doing really well on the lower dose steroids and Plaquenil. Until today...I woke up this morning with really bad pain in both elbows and the right elbow was so stiff and painful that it took me a while to actually extend it the whole way. I came to work and the other nurse took a look at me and said that my elbow joints looked swollen and the symptoms continued to tightness and tingling in my fingers bilaterally. My elbows feel slightly better now and the fingers are no longer tingly but everything else remains the same.
I placed a call in to my doc this morning to see if any changes should be made with the pain I was experiencing. I was called back just now to be told no...no changes and that she would see me in August as previously scheduled- take up to 800mg ibuprofen daily with the meds if it continues. I'm ok with the answer, I guess. I'm just wondering about her thoughts behind it. I'm wondering whether she wants to see if this will finally elicit more positive labwork to help diagnose in August. I'm a little frustrated because anytime I call I feel like a hypochondriac. I don't think it's the doctor making me feel this way, I think it's just me being a nurse, not wanting to bother anyone. I'm just not sure when I'm supposed to call....for what new symptoms.
Also, I went and spent time in the mountains over the weekend with friends for the fourth. The first day I used SPF 30 and reapplied throughout the day (which I thought would be good enough) and my scalp is burned (and now peeling) and my shoulders are burned. The following day I used SPF 70 all day and it was much better. But, could the sun exposure be causing the increase in pain today?
I'm hoping this email makes some sense. I'm hoping maybe this is just a bad day for me.
Sitting at work having to stay late and feeling frustrated is NO FUN!!!
Diagnoses- UCTD 2009, ovarian cysts 2008, asthma 2001
Daily Meds- Plaquenil, Prednisone, Vitamin D