(Very) swollen neck gland: Hi just looking for some... - LUPUS UK


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(Very) swollen neck gland

Froggie70 profile image

Hi just looking for some advice please. Does anyone get swollen glands with lupus? My right gland just under my ear is up like a golf ball and is extremely painful, feels like a deep stinging ache, the gland behind my ear is also sore and swollen but not as bad. Noticed it last Monday but over the last three days it’s got quite bad to the point the pain is keeping me awake. Highest strength cocodamol not having much of an effect and hot compresses only provide temporary relief. I don’t have a sore throat but have been having a bit of a flare for the past 6 weeks. Had a swollen gland in other side right after getting covid booster (coincides with flare) but it wasn’t as sore as this and went down after 3 weeks. Can’t phone GP as we received a text to say the practice only has 1 doctor over the next 2 weeks so only contact if urgent. Any thoughts would be much appreciated. X

17 Replies

I'm sorry to read that you're struggling Froggie. Swollen glands in my neck are a sure sign I'm flaring even if only a slight blip. To be honest, they can go up and down often changing by the hour or the day, much as with so many other symptoms.

Mine don't usually get to the size you are describing. Have you ruled out any local infection, maybe ears, teeth, slight sore throat, or even Covid which can cause swollen glands.

Sometimes these things are a guessing game but if you start to feel more unwell then maybe you could email the GP? Do they operate an online service?

I hope they calm soon maybe make a note of it and what happens over this period so you can discuss at your next rheumy appt.

I wish you well.

Froggie70 profile image
Froggie70 in reply to CSLO

Thanks so much for replying CSLO. Apart from the flare I don’t feel anything else working on me, but not to say it’s not. Good idea to keep a note, I’ll start that today. Unfortunately GP doesn’t have an online service. If it gets any worse tomorrow I’ll phone 111 as the pain is getting worse. Thanks again.

Hi Froggie, I wondered if it could be a blockage in the saliva gland. I get about 3 saliva stones a year - the first few times it was similar to your description as there was also an infection and moving my tongue (for example when eating, talking) was really painful. Over the years I now pass the stones more easily so luckily haven't experienced it so badly since. These days, sucking on a lemon produces enough excess saliva to flush the gland out.

I hope you manage to resolve it, will be thinking of you.

Froggie70 profile image
Froggie70 in reply to peana5

Hi there, thanks so much. I’m working my way through a bag of boiled sweets (any excuse for a sweetie). If it gets any worse I’ll phone the GP. Take care. X

Yes I get this - as I also have Sjorgens as well as lupus tumidus - very painful and also has swollen glands after Covid boosters - doc gave me a boost of steroids to get glands under control and I am still on a very low dose

Hello there. Yeah I’ve not been right since last covid booster. I’ve got a hospital appointment in a few weeks and I sometimes get a Kenalog injection when I’m there so might be on the cards again. Hope you’re on the mend. Take care. X

Hi Froggie, so sorry to hear of your glandular troubles. Pain in the glands is the worst, I get this quite frequently. Makes it difficult to swallow, not to mention significant ear pain! I find I get them every time I pick up a mild bug of some sort, and there’s plenty of those going around at the moment. I can also get them when I’m flaring, not as bad as what you’re describing, but pretty frequently. I have TMJ issues, so when my glands swell, my TMJ pain gets heaps worse as well. How fortunate we are! Something to consider is glandular fever; I’ve had it before, and ever since then, whenever I get a flu it feels similar to glandular fever all over again. I do symptom management as best as I can: pain relief and throat anaesthetics help me get through the night. Look after yourself ☺️🌻

Hi there. I never thought about glandular fever. The glands behind my ear are also up so I’m wondering if I have an ear infection brewing, although I don’t feel I have anything working on me. I really feel for you having TMJ on top of swollen glands, one is bad enough. Take care. X

Might be an idea to rule out ear infections, they’re the worst! Take care and all the best x

Thanks. X

I am sorry that hear that Froggie70 .By any chance, do you have any metal dental implants on the side of your mouth where your neck lymph node is swollen? I understand that you have no cavities or toothache or ear infections.

Just wondering...best wishes.

Froggie70 profile image
Froggie70 in reply to Naladog

Hello there. No metal dental implants but glands in back of ear are also swollen so wondering if I have an ear infection brewing. Thanks for replying, much appreciated. X

Hi sorry to hear your are in so much pain. The fact that you're surgery only has 1 gp is not your problem they are contracted to provide care for thier registered list of patients,you should not have to selfdiagnose. Ring your surgery or 111 if your swollen glands are caused by an infection you may need antibiotics. I speak as a retired nurse

Froggie70 profile image
Froggie70 in reply to Factor50--

Hi there thanks for replying. Pain was so bad last night I was up most of the night and my face is now swollen as well as glands in back of ear. Tried phoning 111 and they said it was within GP hours so not them and our surgery stop taking call backs by 10 am so I’ve missed the boat today. If I have another night like last night I’m phoning tomorrow as the pain was awful. Wee bit better now thanks to the cocodamol. Take care. X

Factor50-- profile image
Factor50-- in reply to Froggie70

Sorry to say but your GP surgery sounds pretty poor. If they are unavailable they should have a steucture in place to take patient calls. If you are still in pain phone 111 after surgery hours

Froggie70 profile image
Froggie70 in reply to Factor50--

I hardly ever contact the GP and when the text came out to everyone I must admit I was a bit taken aback by it. Suppose it’s just the way of things now. If I have another night like last night I’ll definitely call 111. Thanks. X

Factor50-- profile image
Factor50-- in reply to Froggie70

I hope you feel better soon

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