Ear swelling with Sjogren's?

I've often felt tenderness around my Preauricular lymph nodes when I have a flare (around my ears) but last few weeks, I've felt pressure in my left ear so I went to see the doctor and they said I had fluid build up but no infection. Now I'm noticing swelling in that area which the doctor didn't seem to notice. She's not my favorite doctor at that clinic because she barely looks your direction as she "examines" you. I'm assuming it's my lymph node swelling from the Sjogren's but I've not had that happen before in that exact place. Only tenderness before. Also, it's usually both ears that ache and also tenderness in the armpits so I find it strange that it's only the left ear now. Has anyone else had this? could it be something else?

17 Replies

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  • Hello there ,yes I have that swelling also including clavicle armpits and sometimes groin,I get that same fluid build up and no infection in my ears (one side mostly affected) ,I was told to hold the palm of my hand over my ear and almost plunge it over and over to form a vacuum (like you do a blocked toilet ;) ) and it does work ...Good luck....Do you get all over lymph ache as well with SS?

  • oh thank you for the advice! I'll try that. Yes, when I get a bad flare I have that soreness behind ears, armpits and groin. pretty much everywhere the lymph nodes are. When it's all of them hurting at the same time, I know what it is. I'm thrown off guard when it's only one place like my left ear and unsure if it's something else. Is It's also funny that I have fluid buildup when Sjogren's keeps me from producing fluid like I should. My eyes are so dry they feel like sandpaper when I close them but I have too much fluid in my ears! LOL

  • I know exactly what you mean ,I m so parched I wake up in the night several times and drink about 1 litre intermittently, and then fluid in ear and also fluid in ankles ,go figure ! The joys of SS I guess, thanks for sharing the lymph pain I have not heard anyone else say they have it all over like us ,so it is reassuring tbh.That sandpaper feeling is awful ! I also get that pain or ache in separate areas and separate times, and sometimes all areas at same time ,ughhh,I think mine must be stress related? maybe even subconscious stress ,as I don't actually feel it but then I get the lymph pain and I think well maybe ?,TBH I think I worry to much about my health..... Since I have had SS and hashis every ache and pain I get becomes bigger than I think it did prior to my diagnosis .Take care

  • I know you have thyroid problems but do you have other autoimmunes? Do you find it affects one side of your body more than the other?

  • Well not really ,maybe ,My right ear is def affected but not the left, but now you mention it I will take more notice ,I do rebound almost every day and that helps as I notice the lymph ache if I miss a day or two...I will let you know...:)

  • I find it affects my left side more so than right usually. I haven't seen anyone else post that so I'm curious. Like you said, it make me feel better to know I'm not the only one. :) I agree about the stress observation! That's my main trigger I think but it's hard not to worry about your own health. Hope you are well. :)

  • Thank you as well as us all and good and bad days :) Fantastic community though this group is such a wonderful support .

  • I have Hashi and SS and not sure about anything else ,I have a lot of joint pain in places ,but assume that is SS?

  • yep, that's the SS along with all the dryness. I've also had my thyroid become hyper a few times during a flare. Think we're all in the same autoimmune pool.

  • Yes agreed :)

  • Oh and also another question does your lymph pain match your cycle by any chance? and could there be a connection do you think?

  • hmmm good question. I had a partial hysterectomy years ago but I still have my ovaries and last I remember it was about this time of the month but I have never thought about that during a flare. Also, stress can cause your cycle to start early or late too so who knows? Do you think yours is a factor?

  • Well not sure im 55 next week and only this year starting having irregular cycle, hot flashes that last for less than 5 minutes and pass as fast as they come but no sweats ,been 2 months without so far but had the lymph pain last year also ,but I think more often now ? just looking for a reason/s really,

  • I have Sjogrens also. Before I was diagnosed, I had a lot of pain & swelling in front of my right ear. I thought I had TMJ, because I had sharp pain when I chewed food or yawned big putting pressure in that joint area. My TMJ specialist worked with me thinking it was TMJ also. Nothing helped. It was shortly after that I was diagnosed with RA, then Sjogrens. I did my own research adding up all my symptoms & talked to my rheumatologist about it & he agreed it was Sjogrens. Since, he placed me on pilocarpine to help with the dry salivary glands. They were swollen & inflamed causing the pain in my right parotid gland in front of my ear. Since being on the methotrexate, Humira & Celebrex, the inflammation was reduced & those sharp pains have gone away.

    Something to think about. Hope this helps.

  • Hi Tselph,

    sorry I didn't see your reply till now. Do you know if it was pilocarpine that helped that problem or more the biologics? Do you still have the problem at all now? I have an apt with an ENT next week and I hope they know something about SS.

  • I think it was more the biological that helped. I only started the pilocarpine a couple of months ago. My jaw problems occurred prior to my RA diagnosis. The jaw pains cleared up long before I started on the pilocarpine. Are you on any biologics? I also found that the biologics helped my female dryness. But the pilocarpine helped my mouth & throat dryness. I still get really dry, especially by morning. My tongue actually will stick to the roof of my mouth. I hope the ent can help. You can share my experience with him if you want. Good luck!

  • Thanks! At the moment I'm only taking plaqunil and using eye drops, throat spray and chew gum to help dry mouth. Hoping I can get by with this.

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