Phantom wet ear : Hello lovely people hope you’re... - LUPUS UK


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Phantom wet ear

Tiggywoos profile image

Hello lovely people hope you’re all as well as you can be .

Just wondered if anyone on here can relate or explain why an ear would feel wet when it isn’t and also painful on outside ?

Thank you 🙏 as always 😸xx

34 Replies

Tiggy -

When we have weird sensations I think some neurological issue. I have no reason for saying that other than my own experience of nerves causing bizarro things.

I bet someone here has had phantom 👂 and will come forth soon!

Did you mention having neuropathy?


What is that emoji?! 😅 Maybe it’s me when I have half brain.


Tiggywoos profile image
Tiggywoos in reply to KayHimm

Dr Himm

Please do invoice me for your consultation fee as always 😂

I also spotted that emoji and was rather vexed !

As always thank you for your response and I did wonder if you might say neurological issue. I’m not sure about Erythromelalgia having any links with neuropathy.

How are you feeling this week ?


KayHimm profile image
KayHimm in reply to Tiggywoos

Tiggy -

I think erythromelalgia is vascular. What you are describing is a change in sensation. When my head gets weird, I have gotten numb lips and arms, words have dropped from pages and hands tingled.

Try not to be frightened because even migraines cause crazy stuff to happen. But you definitely should mention it to your GP.

Google says whenever there is 💦 on the 👂, have a gin and tonic and 📞 your doctor.


Tiggywoos profile image
Tiggywoos in reply to KayHimm

Google also said chocolate is really helpful in any medical situation 😂. I’m not sure the 12 year old 👨🏻‍⚕️ will be familiar with such matters so I’ll save for rheumatologist 😁x

Goodness knows - remember the old Woolworths advert. ... that's the wonder of Lupus. It's a bit like Whack-a-Mole, you work out one thing, accept it, live with it ...up pops another thing. This is my experience of the big "L". Either that or it could be a message that you need to write the next Star Wars movie. Did it start on May 4th? Please, please don't be offended at the flippancy of the above, but sometimes Lupus just gets to me so much that I can only deal with it via the mediums of sarcasm, irony, frustration, etc. Also I feel a bit light headed today, not from Lupus, but from the fact that I'm going to see my eldest son today for his birthday after finding out that my brother's care team will keep an eye on him whilst I'm away until Tuesday. Yep TUESDAY peeps.. seriously, I am so sorry, that you have another unexplained symptom, sensation. I had several of these before my official diagnosis which comprised of "fizzing" in the right side of my forehead. Plucked up the courage to tell the Rheumatologist at my first appointment who said that she had heard of it before ftom others and that if it was a new thing to me, and looking at the blood tests which were indicative of Lupus, then this could probably be part of it. Sorry couldn't be of more help. Have a good day 😊 Lupus Lot x

Thank you for your message and trust me I share your humour .. some days I think if I was to tell anyone else about these symptoms they’d think I’d truly lost the plot ! Seeing rheumatologist Tuesday .. fearful of being laughed at but as you plucked up courage to describe fizzy head I will do to ! You take care xxx

KayHimm profile image
KayHimm in reply to Tiggywoos

Never feel hesitant about telling a rheumatologist about weird symptoms. They are so used to the crazy symptoms they may think you are in the wrong place if you are too normal. Check back in after your appointment.

Tiggywoos profile image
Tiggywoos in reply to KayHimm

That made me laugh about “normal “ 🤪. Thank you I will

Yes! Painful, sting on outside of ear! Doctor sent me to dermatologist who couldn’t see anything that could be causing it. Said maybe it was related to my fibromyalgia. Ho hum, just call me Mr. Spock 🖖

Hope you have lovely time with your son on his birthday 🥳 xxx

I love your flippant and sarcastic humour. Sometimes it is the only way to deal with all the unexplained craziness of lupus.

Healing hugs.

Thank you. Have you forgiven me? I don't get out much 🥴😳xx

Nothing to forgive for 😂.. sadly I don’t remember the woolworth ads but may I can look them up ! X

I get recurrent ear infections due to lupus and low immunity, so could be?

Hi Tiggywoos, I do get pain, but my problem is dryness around my ear lately and at times a scab forms outside my left ear that will last for some time. I haven't told any doctors as I feel they won't think it relevant, so I know what you mean. It is sad that we are ofrer hesitant to tell things and filter symptoms. I agree with Kay that it may be neurological and worth sharing with the doctor. Let us know what you find out.

Healing hugs.

Ah thank you 🎃 pumpkin . Isn’t it so annoying how new things continue to crop up ! Thank you for the healing hug and I’m sending one right back . You take care x

I do have those sensations. It’s mostly my right ear. Feels kind of like the ear wax is melting out, but there is nothing there. My actual ear has soreness in occasion, kind of like you lay on it wrong or for too long… but neither of those is the case. I also have the dry scales/sore right inside the ear canal. The dry sore has been there upward of a couple months.. gets better and comes back. Hope this helps. You are not alone! Happy Mother’s Day to all you beautiful moms!! 💗

Happy Mother’s Day birdsofafeather !Really appreciate your reply as yes absolutely it is like you’ve been lying on it but you haven’t ! Also get the dry sore /scales .

Thank you for saying not alone it really helps 😊. Have a lovely day ❤️

Birds of a Feather, I have the same dry ear and a scab that keeps recurring on the left ear. Also get pain and spasms from neck, ear and shoulder . Haven't mentioned it to any doctor as I don't think it would get much attention. I like your name.

Healing hugs.

Hello Tiggywoos, your question popped up on my feed today and I thought it was coincidental that my daughter kept telling me yesterday that the outside of her knee felt wet, so much so that she lifted her trouser leg up a couple of times to check before having to change into shorts. She has no pain though. As I’ve ranted on here before, my daughter is one of those who has every lupus symptom but no diagnosis because her blood tests are now negative & when she had ANA+ tests 7 years ago, it wasn’t deemed necessary to investigate further. Sorry, not able to shed any light on what causes it though but will be keeping a close eye on my daughter in light of your post.

Tiggywoos profile image
Tiggywoos in reply to Vikki66

By the way the wet ear thing started a few months ago . Pain came after

Vikki66 profile image
Vikki66 in reply to Tiggywoos

Good to know Tiggywoos - thank you.

SleepyWolf profile image
SleepyWolf in reply to Vikki66

Hi, I have also had a long period of very frequent 'wet' knee without pain - hasn't happened recently though. I have SLE diagnosis. I don't bother mentioning things like this to rheumatologists as I just receive a blank look and then they continue as if I haven't spoken.

Tiggywoos profile image
Tiggywoos in reply to SleepyWolf

Hi sleepywolf I’m sad you get the blank look 😳.. I do know what you mean . Thank goodness for lovely forum people who listen and believe . That’s all we ever want really ..

Vikki66 profile image
Vikki66 in reply to SleepyWolf

How interesting - I can’t believe it’s coincidental. I’ve lost faith in rheumatologists to be honest, I’m just hoping that science will catch up and perhaps the younger doctors will have a better understanding of lupus/ctd, the older doctors we’ve seen are just so blinkered.

KayHimm profile image
KayHimm in reply to Vikki66

Do you have copies of the early positive tests?

Vikki66 profile image
Vikki66 in reply to KayHimm

Yes we do, but when we’ve showed them they just say, yes but lots of healthy people have positive ANA tests. Not along with symptoms I wouldn’t have thought…..

KayHimm profile image
KayHimm in reply to Vikki66

It is frustrating. She could develop more symptoms that make it clear what is wrong with her. Rheumatologists sort of look at the total picture - a positive ANA may be significant in one patient and not in another. The studies have shown that the likelihood of someone having an autoimmune disease when the specific antibody tests are negative is low. There are people here who have do fit that picture, though. No rules.

You should stay in tough with her GP. Things could change if she develops clear cut signs of inflammation. Even with those of us with diagnosed autoimmune diseases, they tell us we may have a virus if they can’t be sure what is causing our symptoms.

Hope you get answers soon.


Thank you Vikki and I’m so sorry your daughter is suffering with symptoms and no diagnosis . Ive never produced a positive ana.

Several years of taking photos and a diary alongside a very odd positive antibody I eventually got diagnosed with UDCTD but leaning more towards lupus . It took 5 years to get to that point so I so feel for you and her.

Take care

Vikki66 profile image
Vikki66 in reply to Tiggywoos

Thank you Tiggywoos - if anyone understands, it’s the people on here.

We have the photos and diary and old unrelated hospital letters where we’ve brought up symptoms over the years but then blood tests come back negative and she simply gets dismissed. It was only 2 years ago, after doing her own research, that my daughter joined the dots about all the years of ill health so I guess she’s still fairly early in the process. The sad thing is that she doesn’t want to seek any medical attention now though because of the attitude of the rheumatologists.😔

Hope you get to the bottom of your symptoms and get some relief from the pain. Xx

Hi, TW.

Is your wet ear on the outside or deep inside ear canal?

I have lupus and I have the sensation of 'squishiness" and itching quite often. Its mainly deep in ear canal, most often on the left.

I also have hay fever and eczema, so I reckoned it was probably related. About 30 years ago, my GP prescribed an anti-fungal/mild steroid/antibacterial ear spray, called Otomise. It cleared up all the symptoms very quickly, in my case. The squishing is probably associated with the inflammation of the ear canal, which is warm and dark, so ideal breeding ground for fungi.

The ear pain I get is only from sleeping on my side. It feels a bit like the heel pain associated with erythromelalgia, when I lie on my back. Weird and annoying 🙄.


Tiggywoos profile image
Tiggywoos in reply to skylark15

Hi skylark good question and I’m not sure 😂. I think it feels bit inside and out if that makes any sense ! Mine is more left too . Weird indeed 😘xx

Krazykat26 profile image
Krazykat26 in reply to Tiggywoos

The weirdness continues eh Tiggy? 🤗I get this too n have it at the moment..on the left side!! 😱

I'm getting all kinds of hearing/ear issues at the moment including tinnitus which never had before. I'm glad u posted coz it's good to know I'm not alone!!

The levels of hearing are different in each ear too. Sometimes they feel blocked but I'm really sensitive to certain is that even possible?? 🤷

Funnily enough a leaflet has come through my door today with details of a hearing centre in the town so I might get them checked n see if I can glean any info. 💜🌈😽😽Xx

Indeed 😊. I always think this emoji looks as if the person has lupus😅. Txx

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