Hi Everyone,
I was having a lot of SS symptoms in the last week or two, despite being on Plaquenil. My TMJ was worse than it’s been in a while, including having a tongue spasm (my rheumy assured me that she doesn’t think this is neurological, but rooted in my TMJ bc of the Sjogrens-arthritis connection and the fact that it happened mid-yawn). I had awful headache symptoms, general muscle aching, felt like sand was in my eyes, felt thirsty all the time, and oh so tired. I napped more than I have napped my whole life in the last few weeks.
My bloodwork showed definite inflammation. My Dr sent in a prescrip for a steroid taper over a few days, and I am going to start it tomorrow.
I guess I am reaching out because I feel really vulnerable. Today, my disease started feeling real. I have been anxious about it before, but it was a hard realization that there are triggers that may cause flares even with medication.
I feel lucky to have access to such a wonderful and responsive doctor. I know I am ok. She did indicate that she saw some signs of relapsing polychrondritis. I am going to be talking more with her at our next appointment in 6 weeks. Anyway, I am just reaching out to see what you all do when you have moments of vulnerability.
The last few weeks was definitely a reminder that I am not in the driver’s seat with this condition.
