I am just starting on the diagnostic roller coaster but i am convinced i have had autoimmune symptoms for many years. With regards to posdible Sjogrens Syndrome i have had dry eye, mouth, vagina, skin, ear canals, eustachian tubes, nose, sinus etc for as long as i can remember. Definitely since mid teens and i am now 43.
8 months ago i had another symptom flare but it was more severe than previously, with significant muscle weakness, such that i couldnt lift my arms hardly, and was very short of breath just walking through my house let alone dealing with stairs. It was severe for about 6 to 8 weeks then very slowly eased but even now remains mild to moderate (fluctuates).
I have read about myositis like symptoms with Sjogrens. However apart from once having an ANA of 1:80 at the time of the flare, the ONLY other sign in my blood of anythj ng being wrong was a very high CK 3 weeks ago of 700 or so.
I have a face and chest rash but otherwise nothing major. I have joi nt aches and occasional muscle aches but otherwise pain is ok. Mostly fatigue, headaches, dryness and weakness.
My rheumy is flummoxed and has ordered yet more bloods, is planning an MRI and at a guess a muscle biopsy will be next.
Has anyone had myositis or myopathy with sjogrens??