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Deafness and fibromyalgia.
3 Replies
fibromite.u.k. - April 16

Hi, I am new to the forum and like most of you, I feel ill all the time with fibromyalgia and other illnesses, so I am really glad that I have found somewhere that I can talk to others who will understand how I feel. I do have a question to ask you all. Last August, I suddenly went deaf in my right ear, it happened in a matter of seconds and with no warning, I wasn't ill with a cold or anything at the time. After tests including an MRI scan on my ear, it was found to be nerve deafness and I will never get my hearing back, and now have a hearing aid. The consultant said that he could find no reason for why I went deaf. I was sent to a rheumatologist who did lots of blood tests and I was found to be aneamic. I then had to have some horrible tests to see if I was bleeding inside and nothing was found. Iron tablets have sorted out the aneamia, but they never found why I have it. Now they have found that I have a blood clotting disorder and I have to have an MRI scan of my brain next week, but I have no idea what this has to do with having a blood clotting disorder. My main question is to ask if anyone has ever heard of anyone going deaf through having fibromyagia? I would be grateful to hear from anyone who has any ideas on this. I am feel very low about all that is happening with me.

 

Duo - April 16

I am sorry to hear of your deafness. I can't honestly say that I am deaf but I do get constant noise in my right ear and pain and therefore I don't always catch what people are saying. The noise is much worse when I lie down. Have you got problems with your temporalmandibular joint? I am told this is why I have problems with my right ear and I do know that a lot of people with fibro have TMJ problems. Good luck with your scan.

 

fibromite.u.k. - April 16

Hi Duo, thank-you for responding to my question. I do have TMJ problems on both sides and have done so since I was 14 years old. I know that it is something that many people with fibromyalgia have and that it can cause ear pain. However, it is not a cause of my deafness, which is that the nerve has died. It is a dreadful thing to happen, especially so as I love music and playing various instruments. Music just doesn't sound the same any more, it sounds flat and as the ENT specialist said, I have lost my stereo effect. I would really like to know why I went deaf so suddenly, as all I was told, was that it might have been a virus that just attacked my ear and that I will probably never know what caused it. I do get a bit of noise in both my ears occasionally, but not much. I have had problems with my left ear since childhood, and because of all the infections in that ear, my ear drum is badly scarred, yet my right ear (the one which has gone deaf) has a perfect and working ear drum, but the nerve to it no longer works.

 

iliveinpain - April 19

Hi fibromite,

First I want to tell you to calm down. This is extremely frightening, but you may not be completely permanently deaf in that ear.

A few years ago, that happened to me. I was showering and I got a "pop" sound and pain in my ear out of nowhere. I lost hearing in that ear. Went to an ear specialist immediately. He also diagnosed nerve damage. He referred me to another doctor for an MRI brain scan. The scan was clean, thank God, no brain tumors, but the hearing never came back for a couple of weeks. After a couple of weeks, I started getting hisses and static, like a bad speaker. The hearing came back a little bit, not completely. Years later, the hearing still isn't perfect, but I'm not totally deaf in that ear. Maybe 5 years or so after that happened, the exact thing happened to the other ear. Again, the doctors have no clue. Today, years later, I am not deaf, but I have trouble hearing people, they often have to repeat things and I still won't catch it. Tv is bothersome too, I have to always ask my husband, what was that? It's annoying, but I can still hear at least. I always have the feeling now of fullness in both ears, like when you're in an airplane. If I try to pop my ears, ya know, hold my nose and blow, my hearing will clear up completely and it's wonderful, but as soon as I swallow, it's back to fogginess. It's so frustrating, I've been to so many doctors and had so many tests and no one can figure out what causes this. I guess it's fibro related, I'd never thought of it, but it probably is. It started before I was diagnosed. This just goes to show that the doctors still don't know alot about this disease. But yes, I was deaf for a while too, and now have hearing loss, but am not deaf.

so, try not to panic, the hearing will probably come back a little, but maybe not to what it once was. I'm a music lover too, and it's horrible I know :( When I get a cold, my ears hurt alot and the hearing is 10 times worse too :(

 

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