Sjoregons syndrome: Sorry if it's spelt wrong. I... - LUPUS UK

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Sjoregons syndrome

HeatherMOttwell profile image
5 Replies

Sorry if it's spelt wrong.

I went to the Dr today for my chronic ear pain. I've had it for a couple months now. But Wednesday I traveled over the pass and since then it's been unbearable.

First time I went to the Dr he said they looked fine a little red but nothing unusual.

I went again. They looked fine. No infection. But a little inflammation in my sinus. Nothing they could do. Didn't know what it was. Didn't test me even though I brought up ss. Sigh.

What Are Your Ear Symptoms like?

What do you do for them?

Mine is just pressure like they have to pop but th he pain radiates into my jaw.

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HeatherMOttwell profile image
HeatherMOttwell
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HeatherMOttwell profile image
HeatherMOttwell

Bump

Bonnie39 profile image
Bonnie39

I suffered with really awful ear pain following a severe ear infection. Eventually after 18 months of being bounced around ENT decided it was an inflamed TMJ. Increased antidepressants plus ibuprofen based gel takes the edge off but then neurologist ordered MRI and bloods and there we found a +ve ANA and antiphospholipid syndrome, which the MRI confirmed strokes too.

Am on lifelong warfarin now but still no treatment for the SLE, a year post results. I think a few of us suffer with ear/TMJ pain.

HeatherMOttwell profile image
HeatherMOttwell

It's horrible. I can barely think at times. I got nose spray which help for an hour or two tell it wears off. And of course you can only use it two times a day.

HeatherMOttwell profile image
HeatherMOttwell

No one else?

sazzyb profile image
sazzyb

Hi Heather

I have Sjogren's but fortunately don't suffer with ear problems.You need to go back to your doc and explain it's become unbearable and that you need help.

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