Please can anyone help at all? After being diagnosed with sleep apnea, 6 months into treatment I deteriorated. I had joint inflammation (current evidence is suggestive of gout); possible Vasculitis shin rash (now gone), recurrent ulcers, chronic low grade fevers, fatigue & problems walking which is pretty bad now though can still walk just about. 2 rheumatologists ruled out lupus; consider behcets unlikely & decided it is fibromyalgia. Problem is I had 2 raised CK levels around 1350 each time 4 weeks apart. 3rd time ck was just above range @ 207 & no thigh inflammation on mri. I know I definitely did not do anything physical during the elevations but my body suffered stiffness & costochondritis. Possibly breathless episodes.
My rheumatologist is seeing me in 4 months to see if things have settled but I wondered, could they be missing something? Could it be inclusion body myositis (I'm 38) or early stages of polymyositis? I should be relieved except my walking is so painful & hard, it's like I can't walk any further. I struggle look after self & toddler. Please does anyone have any ideas?