Good evening to everyone. This past week I have been experiencing increased jaw and ear pain, fullness/pressure under my chin and in my neck just above my thyroid. Additionally, I have developed a rash on my upper legs and arms. I was seen by a PCP that was covering for my PCP. He did not think it was an infection and he tried to consult with my ENT doctor (she was away). Also, My Rheumatologist moved to Maine this month. Fortunately, I do have appointments with my PCP and the dentist in a week. The symptoms that concern me are the pressure under my chin and in my neck…this is such a strange feeling. Does anyone have these symptoms?

Thank you,

Hi Parched- I do get these symptoms too, I've put it down to glands aching, never seems to come to anything nasty, just there a lot of the time. Having said that, I do have problems with Eagles Syndrome (elongated styloid bones which irritate the whole area), and also pain all round that area from an irritated Trigeminal nerve, so I'm never sure what's causing what!! (The dryness all started around the same time too) I had surgery for the ES so the styloid that side is removed, but still have some symptoms... No rash though, except for prickly heat when I've been out in the sun.

Sorry I can't be more helpful, hopefully your dentist or PCP may help when you see them.

Jules, thank you for responding to post. Wow, this can all be quite complex. How was the Eagles Syndrome diagnosed? Trigeminal nerve irritation is not so nice either.

Added to my other symptoms my upper lip has been twitching for the past year. I thought it was stress, but I am starting to wonder if it somehow related to SS. Also, I was hesitant to acknowledge it might be anything serious because my father passed away this past March due to complication of Parkinson’s Disease and my husband was diagnosed with PD a 2 years ago (only 58 years old). Like many people, I have reasons to feel stressed. Your acknowledgement helped me today, thank you.

I'm not surprised that you're stressed, it sounds like you've had a lot to deal with, and that makes worries about your own health hard too. Big hug to you!

ES is diagnosed by CT scan or panoramic x-ray, doesn't tend to show up so well on MRI. Like SS, there's a lot of ignorance about it, and many people are often misdiagnosed. I've been wondering how it all fits together- probably shouldn't as you can drive yourself nuts like that! Just deal with the symptoms...

There's been some discussions about pain in salivary glands, you could have a look for those- it could be the SS inflaming those glands giving you these symptoms. Good luck with your appt. !

Parched, the twitching lip and the rash is something to mention to the doc. SS can cause neurological issues. I have problems with that to varying degrees but they have also been able to treat the worst of it so definitely worth talking to them about it.

Rashes can be an issue too….allergies, things like that, can all get into a cycle with SS being as its all the immune system over reacting or reacting to something it shouldn't be at all.

Jules, I like to understand what is going on if I can. Not knowing what was causing my pain and strange symptoms was more difficult than being diagnosed. I am also curious about most things in life. Thank you for your warm words of support. I will look up the past discussions about salivary gland pain.

I hope you have a lovely evening,

EnjoyLife, with all that has been going on I forgot to mention the lip twitching to the doctors. I was already planning tell my PCP when I see her next week. That is good to hear you have received help for your neurological symptoms. I have also had some other strange/different rashes but they were not as wide spread and did not last very long. I think those were from becoming sun-sensitive which I have learned is part of autoimmune illnesses. Being able to share with other people who understand is very helpful. Thank you and I hope you enjoy the rest of your evening,