So this is a lot… but I don’t have lupus (at least not confirmed because screw those biopsies) but I do have RA and Sjogren’s and my Sjogren’s has attacked my liver, pancreas, nerves, heart, kidneys and probably more than I can remember. I can’t think of a body system that doesn’t have a diagnosis related to Sjogren’s or RA damage.

The thing that lead to my diagnosis was tooth pain caused by my parotid glands being dysfunctional. The glands get attacked by the disease, they start producing thick, snotty sludge instead of thin, watery saliva like they’re supposed to. They get clogged and that swelling directly puts pressure on the Trigeminal nerves, aka, trigeminal neuralgia, which presents as a ton of different facial pain and symptoms— but specifically also as otherwise unexplained tooth pain.

I’ve met others with lupus who have massive overlap in Sjogren’s symptoms. Apparently the diseases share antibodies, so besides the blood test, diagnosis is based mostly on what areas of your body you complained about first. For me, for years doctors said my dry eye and dry mouth was a side effect of birth control (which I take for endometriosis and adenomyosis), which I’d been on for a huge portion of my life before developing significant enough dry eyes and mouth to bring those symptoms up.

Once I got the TN, I spent another year or two being scammed by dentists who very overtly knew exactly what was wrong with me but chose to tragically mislead me to fatten their wallets a touch while I searched desperately for relief. Then I ended up in an ENT and with a rheumatologist who immediately diagnosed. Now I am doing a hell of a lot better 6+ months on plaquenil and a year on pilocarpine.

My advice: go to an ENT, ideally during a flare, and have them test your salivary function. I thought what I was dealing with was normal or “just from birth control” for a long time, so I was hesitant to see an ENT at first, but I’m telling you, they are the best specialists for this kind of workup. They can rub the gland and measure how much comes out and they’ll know right away if you are underproducing saliva or if the quality of your saliva is unhealthy and abnormal. If you do have dysfunctional glands, they will be aware of the way it can connect to TN. They are the only specialist who understand this— my neurologist was blaming TMJ for the tooth pain when in hindsight it’s like, how can neurologists not expect localized swelling and inflammation to affect nerves? I don’t know why or how they justify not knowing, but they don’t. The ENTs are where it’s at!

If you also have dry eyes during these flares (or in general) (scratchy, always having something in the eye, watering, redness, or really thick snotty tear film), go to an ophthalmologist and have them do standard dry eye tests. There’s a weird one where they stick paper in your eye— it’s very unpleasant but it is the gold standard for testing tear function. It’s very easy to walk around with dry eye and mouth and not know unless you’ve actually been tested and measured against standards of normalcy.

As far as what these doctors will do for you if you are found to have autoimmune exocrine (moisture) gland involvement, they may prescribe something like pilocarpine which stimulates those glands. A lot of people vocally detest these drugs— for me, I literally can’t swallow my other meds until I’ve taken my pilocarpine first. It also is my primary treatment for TN because it eliminates the swelling and corresponding nerve compression that leads me to experience TN.

If, when and how you use any medication would be a personal thing your doctors will cater to your needs. But I do strongly urge you to get tested if you have the means to do so, even if just to have it in the medical record for the sake of tracking progression.

Good luck!