Heavy body fatigue weakness
To begin while I do have SS, I also was told I have a muscle disorder called POLYMYOSITIS. I've gone 3 years without a diagnosis only the SS but none of the RHUMs thought my muscle weakness was from that I had a nurse let me try azathioprine 5mo And my weighted down arms felt perfectly normal while washing my hair 1 day the doctor took me off of the drug because she said it was messing with my liver fast forward to today nothing was helping my body my only symptom feels like head to toe even my tongue feels heavy filled with lead and weak. I've found myself at a any URO muscular doctor who gave me a thorough exam looked at all my antibodies and said he believes I have MYOSITIS he did AN EMG on my leg and confirmed it and said My only true weakness on my body, while it felt like the whole thing, were my legs only!! he insisted the rest of my body was fatigued even though I don't get tired it's just my body. Steroids high-dose helped my legs get the strength back which was a miracle but 41 year up till today nothing has fixed the muscle fatigue weakness I'm not functioning and I've been on 3 different immune suppressants in the last 15 months and 5IVIG sessions no change in my symptom I guess I'm posting here in case any of you have what I'm describing maybe this is part of the S.S. maybe one of you out of everybody has had the symptom and got fixed some other way please please please reply I really feel so lost and don't know what to do anymore! PS My positive antibodies include ss, ro60,ro52, jo1 ana 1.160 speckled. What's also weird is my CK and inflammatory markers are always very low almost normal which is why it took so long for help.