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A MyLupusTeam Member asked a question 💭
Berlin Köpenick, DE

Lupus, sjögrens disease, celiacs disease, Antiphospholipidsyndrome and Factor V Leiden Mutation

February 14
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Answer Summary

Members rallied around a question about severe lower jaw pain in someone managing lupus, Sjogrens, celiac disease, and other complex... Read more

Members rallied around a question about severe lower jaw pain in someone managing lupus, Sjogrens, celiac disease, and other complex conditions, with several pointing out that jaw pain can be a sign of a heart-related emergency and should be checked quickly. Community members also suggested TMJ, dental issues worsened by Sjogrens, and rarely, bone complications from certain osteoporosis medications as possible causes. A recurring theme was deep concern for the member's overall wellbeing, including struggles with bradycardia, anemia, and feeling dismissed by doctors, with many encouraging her to seek better care closer to home.

A MyLupusTeam Member

It could be TMJ

February 15
A MyLupusTeam Member

@A MyLupusTeam Member Yes, I'm seriously considering to travel back home. My children beg me to stay here, but what good will I be 6 feet under?

August 31
A MyLupusTeam Member

Might you consider moving to the US, Natasha? It sounds like your healthcare there has been awful.

August 31
A MyLupusTeam Member

@A MyLupusTeam Member right! Thanks for reminding me, I had that before when I had something heartrelated going on; I had my brother on the phone, he informed me I must be having a heartattack back then, it was like somebody was crushing my lower jaw or disassembling it with much force, I was crying on the gurney in that one german ER Vivantes Hospital Friedrichshain. Finally after many hours in severe pain, a male nurse came to save me with some strong opiods which were administered intravenously, I think it was Oxycodone(?) but I'm not too sure anymore, it's been a while.

February 14
A MyLupusTeam Member

Having trouble logging in. Do you think it is pain radiating to your jaw from your heart? Check your heart rate and oxygenation ( if you have a smart watch)

February 14

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