Anyone else get ear pain?: Hello... - Ehlers-Danlos Sup...

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Anyone else get ear pain?

Lin53 profile image
9 Replies

Hello everyone. This may sound silly, but does anyone else get ear pain associated with their hypermobility? I have it in my left ear, feels like an ear infection but the doctor has examined me many times and my ear is perfectly clear. I have even asked my dentist to look at my TMJ joint last time I went for a check up. I read somewhere, can't remember where, that JHS can affect the small bones in the ear and was wondering if anyone else suffers from this?

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Lin53 profile image
Lin53
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9 Replies
Patricia2015 profile image
Patricia2015

I had nasty deep inner earpain for about year and nothing helped. it was an agony to sleep on that side. My GP told me it was probably my nasal polyp that blocked the nose-ear airway and I took cortecosteroide nasal sprays for months and it didn't help. Eventually the pain went.

I was just recently diagnosed with HMS based on my disabling hypermobility (use a wheelchair for large distances and have orthopedic shoes) but I habe a myriad of internal and skin problems/diseases (chronic illeitis, slow woundhealing and striae (they just took a skin biopt), fatique, positive ANA, inflammation through my body et cetera) so I believe I have EDS since my youth. Things turned disabling after my 36th year. I am now 41. Unfortunately Dutch doctors are very reluctant giving you a serious diagnosis. So I have no right to chronic physiotherapy, a new wheelchair or disability if I can't work anymore.

Tillyray profile image
Tillyray

Hello Lin. I am pre diagnosis and due to attend my next important specialist rheumatology appointment soon..I do already have fibromyalgia and was at last rheumie appointment told I had hypermobility..

I have a long list of symptoms as you no doubt also have,and one is ear pain..The pain is felt in my inner ear and is a shooting type pain which is severe. It just comes on without warning,lasting minutes.I also have periods of dull/muffled hearing and have experienced a feeling of water in my ear.This has all been examined by my GP but nothing was obvious, and I had no infection. I also have intermittent tinitus..

I have no idea what these pains and other sensations are because of? But I have many questionable symptoms, and I am hoping they can be attributed to some diagnosis soon.

I have got use to 'putting up with my lot'.. as we do..but its not easy is it..

when pains are bad I use the old favorite hot water bottle☺ I wish you well and good health x

Lin53 profile image
Lin53 in reply to Tillyray

Yes, I have some tinnitus, too. I have had muffled hearing in this ear for about 20 years, which seemed to begin after a heavy cold. I have had hearing tests at the hospital which have shown no problem with my hearing but I know that I cannot hear properly in my left ear. Very occasionally (maybe a couple of times a year) my ear will 'pop' and I can hear well but that gradually fades. The pain in my ear can last for days but my GP can't find anything wrong with it. another thing I have to 'live with' but I'm better off than a lot of people. Good luck with your visit to the rheumatologist.

Marshamellow profile image
Marshamellow in reply to Tillyray

Hello I'm currently waiting for an appointment at the hypermobility unit - so may be collecting my pension by the time I get seen. Over the years I've been diagnosed with costochondritis, fibromyalgia, tmj etc. But for the last two years I've had swollen ear canals with ear pain and no one can tell me what's wrong. After seeing a Bowen therapist he said I needed to get checked for EDS (I am hypermobility Beighton score of 8/9). The continual pain, crawling sensation in the ears has been driving me mad. Intermittent tinnitus and full feeling in the ear too. My sterno muscle in my neck is rock hard and has not responded to steroid injections.

If anyone can shed any light on it, it would be much welcomed.

Best wishes

Frowning profile image
Frowning in reply to Marshamellow

I have vascular Eds and have the exact symptoms you describe—idenitical!! Search google and search for earaches when swallowing and you might be abit shocked but read more entries to get a perspective about the causes and go from there. Hope this helps

Country4eva profile image
Country4eva

My left ear pulls, rings and i hear my heart beat pound in it all the time. People who have eds usuaslly have jaw issues. The disc in my left jaw has disentigrated and my jaw has shifted. Sometimes it even locks up.

Frowning profile image
Frowning

You bet I do!!! I have vascular Eds and whenever I swallow I have constant earaches in both ears and tinnitus as well. Try looking up “earaches when I swallow “ using Google search and you will find the condition name for it and all details. The info is right on. Too lengthy to go into description here but you’ll be amazed about what you find

Hrhs62 profile image
Hrhs62

Yes 100% get that and thought I was the only one ( I have hEDS, fibromyalgia and MCAS) it can be really excruciating

Moonjewel profile image
Moonjewel

Hi, yes I have struggled with the exact same issue for years, hospitals dentist doctors. No joy. Feels like an ear infection. I have only recently began to wonder if it's down to my hypetmobility isdues

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