Trig neuralgia

Hi recently diagnosed with sero negative sle , I have an enlarged thymus and a hole heap of symptoms that over the years Gp's have just passed off as me being anxious . Until recently when I got seriously ill . Anyhow , I wanted to know if anyone else has suffered with trigmineal neuralgia , hope Ive spelt that correctly . I felt I was having a flare ,sore throat , glands up , joint pains ,chest pain . Then I developed excruciating facial pain left side along with a fullness and ringing in my ear . Had my teeth checked they were okay and Gp put me on carbamazepine . Side effects grim ,but the pain is under control . No sign of what's causing it ! Any ideas or suggestions , GP wouldn't comit to it being lupus related , so my work are going to punish me for being off sick , I've contacted my rheumy but I have to wait three months to see them ,so I feel lost as usual , any words of wisdom . I did check my pee and it had protein and leukocytes in but my GP dismissed that . The pain has been so bad any ideas .

6 Replies

  • Sjogren's can cause this problem as part of the small fibre neuropathy that attends a third of all cases. Here's a link someone here gave me yesterday that mentions this symptom specific to Sjogren's ‪‬

    Out of interest, when you say seronegative Lupus do you mean no antibodies or just a positive ANA without ENA pattern or other bloods for Lupus?

    I ask because, if your ANA or RF are positive, you could possibly have Sjogren's Syndrome as a primary disease which is morphing into secondary SLE. For eg I was diagnosed with seronegative RA to begin with but this has changed to primary Sjogren's Syndrome now. All the connective tissue diseases, including Vasculitis, can cause the facial pain you describe. But I think Sjogren's most often affects the facial nerves - it certainly affects mine a lot. Not found any treatments I can tolerate yet though so I just use a mouthguard and try to live with it - it's not so bad all the time but when it's bad it's awful so you have my sympathy.

  • I'm not sure re the test results but I have dry eyes , a nursing colleague mentioned sjogrens . I was just told sero negative by my rheumy. I've found the carbamazepine has stopped the pain ,it took 3 days to work ,but slowly it blocked it all but a mild sensation , but I feel so dizzy and drowsy . The pain however was so bad I was in tears . I could not see myself on these drugs for a prolonged period of time ,the side effects are almost as debilitating as the pain . I'm hoping whatever caused the inflammation and pain will abate . I am concerned my doctor will not admit it is caused by lupus or is even related to it . Thanks for your response , you are very brave putting up with the pain !

  • I'm a bit of a weirdo about pain really but I did end up on steroids for six months last year because of it and my mouth, nose and left eye are often full of pins and needles and tightness. I've had burning mouth syndrome on and off and this reduces me to an neurotic jelly! most days my face is sore and tingly but not in the way you describe.

    I suggested Sjogrens because it often goes with Lupus and I read about trig neuralgia on the link I posted for you so I know it's a feature of this disease. Worth reading and asking about perhaps? I was offered Carbemazapine for my small fibre neuropathy (everywhere) but refused it as my rheumy consultants didn't believe in seronegative Lupus. I therefore felt wary of taking anything that might just mask my symptoms and prevent me from getting properly diagnosed. I tried Amitriptyline, Gaberpentin, Duloxetine though and the all gave me intolerable side effects. Now it's more a case of numbness than pain for me and I'm always dizzy/ suffer vertigo, even completely unmedicated. I can't afford to try anything else and risk these kind of side effects, even now I'm officially diagnosed with Sjogrens.

  • Hi sorry to hear this , I'm getting tingling as well as pain ,also terrible ringing and fullness in my ear ,even with the meds . Nerve pain is vile . With my enlarged thymus and catalogue of symptoms to many to count my rheumy was left with no option other than to say it was lupus but seronegative . I've had countless tests but usually when I'm feeling healthy as appointments are hard to come by which is frustrating . This neuralgia really came out of the blue and my GP didn't think it was caused by lupus , but the more I've read ,the more it seems likely . Thanks for talking .

  • With your nerve pain symptoms it would be well be worth reading up about Neuro Sjogrens too. Seronegative Lupus and Sjogrens sometimes aren't fully seronegative - just negative for the very specific patterns. Rheumies who will diagnose Lupus and Sjogrens without even a positive ANA are few and far between these days so I'm learning from people here. In Scotland it is regarded as a complete no no. I'm lucky to only be seronegative in the specific pattern of Sjogrens - otherwise I'd still be left with the remnants of an old seronegative RA diagnosis if that!

  • Ps good idea to learn more about your test results and diagnosis if you can. Try asking GP for copies of letters and lab results so you can learn more?

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