Hi Im new. Just got diagnosed last week. Im kind of confused. MOst of the symptoms that everyone else has I do not have and the symptoms i have no one else seems to experience. I have Dystonia, and muscle weakness on the entire right side of my body. I also have spasming with even the smallest use of my right arm. The other major thing is that i can not wear anything that is not 2 sizes too big for me and no undergarments because it starts the spasms and a lot of nerve pain. I would really be interested to hear if anyone else has experienced any of this??
Oh my, I hope your Drs. Can help. I have , seldom occurring facial nerve pain but have kept the attacks under control with ibuprophen and nightly use of flaxseed oil on my face. So far so good, sort of like walking on egg shells. Ha. Fatigue is another problem that most of us have along with the dryness. I hope someone has suggestions for you. Lots of nice people here.
It sounds as if you have issues unrelated to Sjogrens. I would bring up these symptoms with your PCP and ask for a referral to a specialist for nerve pain. Possibly a neurologist. Autoimmune diseases occur singularly or with others. Your PCP can run panels to determine if you have others. If neurological, your panels will not indicate anything. I would keep looking and investigating for additional undiagnosed medical issues. Good luck and remember others are in this situation with you. We are here to support you!
I have some of your symptoms but it hasn't been attributed to SJorgens. I would research on the internet and track everything you are dealing with. I too would seek a good neuro. Go to vitals.com to check out doctors. Good luck
I’m new to the site,too
I realize I have had many of the symptoms but never put it all together until I was with my husband at his ENT appt. and his doc took one look at my face and made the diagnosis. I was also diagnosed with lupus around that time. So many of the symptoms overlap I don’t know what to attribute to what. I have some of your symptoms, but many of the symptoms you describe don’t appear in any of the literature I’ve read up on. Maybe seeing a neurologist is worth a shot. I hope you find some relief. Keep posting. Sarah
I have extremely painful nerve pain along with numbness and it has taken a long time trying different medications for over a few years to keep it tolerable. I still have numbness in my hands and feet and burning in my feet. I too have muscle weakness and dystonia. I agree with the others that it’s always good to get evaluated as thoroughly as possible to rule out any other disorders.I think that some with sjogrens just have some eye dryness, and for some it’s a major issue. Some people have some dryness in their mouth, and others can’t eat well without choking because their mouth is so dry,etc. I am still learning so much about this disease and it can get overwhelming and confusing.
wow thank you sooo much for answering me everyone!! I am gratful to hear that others have the same pain as i do! Especially the dystonia Hollydoodle—that is so overwhelming for me and causes so much nerve pain and dysfunction. I live in Cleveland (the land of the almighty CLINIC) and have seen 5 neurologists, 3 Rheum, 2 infectious disease, 2 Immunologist, etc etc…no one could diagnose me. After 2 years we hired a diagnostic specialist from Boston. A sort of “Dr House”. Within 2 months I had a lip biopsy and was diagnosed with Nuerological Sjogrens. My doc is still testing and seacrching like you all said just because my symptoms are so weird. So far…nothing but sjogrens. He siad that there are cases of dystonia but not many. In my case the CNS is very involoved. NOt sure what can be done about this if it is Sjogrens causeing it?? What do any of you do for nerve stuff and dystonia?? thanks soooo much!! :)) Amy (runrx2)