Ear problems: Hi does any one suffer from... - LUPUS UK

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Ear problems

cazzm profile image
14 Replies

Hi does any one suffer from reoccurring ear problems,

Over last few months I have suffered with pain in ear canal and it swelling...

I have been under diagnosis for 2yr suspect lupus, now fibromyalgia an possible non serum arthritis and degenerate disks? Been given meds for lupus and various painkillers ! To say am fed up is understatement!

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cazzm profile image
cazzm
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14 Replies
Natura profile image
Natura

I have chronic ear problems with the lupus. I take a turmeric supplement and pound ginger, turmeric tea and it seems to help with the swelling. I also put cotton balls in my ears whenever I get out of the shower. Or when they start to bother me. Sorry to hear about your problems. Hard to stay happy...I am having a hard time....

cazzm profile image
cazzm

Sorry to hear u too are not having a good time at the moment!

Went to gp, says slight infection ? Told him this is same as last few times has happened over last few months ! His rely we'll keep an eye on this! Here's hoping they gonna put this jigsaw of symptoms together !

hazelHollingsworth profile image
hazelHollingsworth

Hi, I am also having a lot of problems, for the last 10 weeks I have had an ear infection, two lots of oral antibiotics and 1 lot of ear drop antibiotics and am now under the hospital as there seems be be a 'fungal growth' that was caused by the Ear Drops!!! I have had problems now and again right through my life from being young from catching measles when i was 4 years old (no injections then) I am now 66 and still get these problems. I do not know if my Lupus sle makes it any worse or not. One doctor says Yes it is the Lupus and another says No !! so sorry at the moment I am unable to help.x

MrsMouseSJ profile image
MrsMouseSJ

The more I am on this forum, the more 'aha...' moments I experience. Ear canal pain and swelling? Yes! It can be random but always occurs just before and during my period, in my right ear. Sorry, no ideas on what you might do, but, from a rather selfish perspective, it is good to know I'm not alone.

Hi Cazzm, I don't know the name of this particular condition but, my neighbour has Addison's disease. She now wears hearing aids. I asked if it was related to her Addison's , to which she replied that certain autoimmune conditions are prone to an infection that affects your ears. She said that Addison's and lupus sufferers were top of the list re vulnerability. I have to say that my hearing is getting worse, though I'm not aware of any infection. Also, my last visit to St Thomas's, the waiting area had 4 people with hearing aids. As we are all there for similar problems, I was concerned at the time.

Whathappned profile image
Whathappned

Hi

I have had ear and jaw problems on and off since I started with all this 2-3 year ago. I initially had a dreadful infection which I had treatment for but I've never been able to hear well ever since. And I still get he occasional pain.

It's something I've adjusted to but can make you weary. It has got less frequent and less severe. Often it is just tender and within a few days it goes.

I hope it improves soon. How long does each episode last?

Also have they taken a swab to make sure the treatment is appropriate x

cazzm profile image
cazzm

Had 5/6 episodes like this over the last few months, put off going to gp, just passed it off as earache , but feel it not an must be connected to immune system etc...

When went to gp , just said sore n red ,infection and prescribed ear spray,

It's been very sore n tender an canal swollen for 5 days now! Usually last about wk / wk an half! No swab .....YET! Lol

Whathappned profile image
Whathappned in reply to cazzm

If you have been using ear spray for 5 days without improvement then I would think it appropriate to swab. They say you should be noticing a difference in 3 days. Go back see a different one or a Nurse Practitioner. Xxx

cazzm profile image
cazzm

Thanks , only had spray for 3 days , it is less tender but still little swollen , am back to gp this wk.....

HeatherMOttwell profile image
HeatherMOttwell

I have been having ear pain for I believe six months. Up untell recently it was tolerable. I was getting blood from my ears. I went to GP for it he said it was a little inflamed. When I went over the passes a week ago (Wednesday) the pain got sever. down my neck on my jaw. Super painful. On Friday I went to the ER cause my Dr. was full. He looked said I have Eustachian tube dysfunction. Which is just a fancy way of saying swelling from my nose to my ears. No infection. I got prescribed steroid nose spray to reduce swelling. which is NOT helping. Relieves pain for an hour or two. And of course you can only use it twice a day. I am going to my GP tomorrow. Now from the research I did ear problem are common with Lupus, and Sjorgens syndrome. 25-50% of people with Lupus get Sjorgens. And guess what the best part is? They cant do anything for it. Fun right? My ears are killing me. I am hoping my Dr. runs the test for Sjorgens....but I doubt it. He doesn't seem to like running test. So convenient. I am going to ask referral to a Rheumatologist.

Whathappned profile image
Whathappned in reply to HeatherMOttwell

Hi. Sorry to hear your having all this bother with your ears. I have ear pain on and off, constant tinitus and poor hearing,. It started when all this Lupus stuff started. I had a couple of ear infections one after another. One being particularly bad. Anyway I have had problems with on off pain since. I also have blocked eustacian tubes and I have a steroid nasal spray that has made little effect. I thought I should let you know though that a steroid nasal spray works just like other steroids. Its effect is felt long term and it is not supposed to be immediate. its not a decongestant or something to open your tubes. it works by stopping/dampening down the inflammatory reaction in the lining of your tubes. It could take a couple of weeks before you feel its full effect. The thing my doctor offered was grommits! Yes like kids have lolx

cazzm profile image
cazzm

I am under a rheumy have been for nearly 3yr, I have constant joint pains, started in my hands. Wrists, toes, then knees ankles , hips elbows , now lower back neck and shoulders ! Also muscle weakness arms n legs , mouth ulcers most wks, hair loss/thinning. I have a rash on face over nose etc, 2 skin biopsy , say roscea ?

But have lot of lupus symptoms? Have been on hydroxychloroquine , naproxen fr two years, nepram for 6months, recently doxychlorquine , steriod injection. Vit-d supplement , have raised ana? And am still no further , list of possibility are sle, fibromyalgia , non serum arthritis , connective tissue disorder? Immune system ? And start of oesto arthritis in feet? This and low mood?

Really at my wits end , I feel for each and everyone goin thro the same mind field I am x

Purpletop profile image
Purpletop in reply to cazzm

Not wishing to add to the already crowded list of possible diagnosis, have you been checked for vasculitis? Small vessel vasculitis could be the cause of your ENT problem and skin complaints. The rest of the symptoms you mention are pervasive across most autoimmune diseases but can also be present in vasculitis. Ask your doctor to put you on a trial of steroids (say 6 weeks taper) and you can monitor your symptoms during and after. Treatment would be similar to lupus, I.e.steroids and an immunosuppressive. Not that it is easy to diagnose, even more elusive than lupus. But you can just ask and see.

Louise2016 profile image
Louise2016

Hi yes I have can I ask what you mean by degenerate disk? I have a false fundus in my right ear and have trouble hearing all the time, my left ear has a grommit, I'm also having problems with my jaw at the moment which does not help matters?

I feel so alone sometimes I also get a thumping noise in my right ear? as well. I have always had problems with my ears not nice.

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