Fibromyalgia and Hearing Loss

“Limitations only go so far”, Robert M.Hensel

Hearing loss appears to be common after a prolonged history of fibromyalgia.2010 162 It seems as though sensorineural hearing loss, that is, loss that is due to damage to the inner ear auditory nerve pathways to the brain, occurs more frequently in fibromyalgia than has been reported. Not hearing lovely sounds like that of this wonderful children’s group can have devastating effects on a person’s morale as with most deaf people, but added to which is the physical pain of fibromyalgia. It stands to reason that the tension and anxiety that goes hand and hand with fibromyalgia would result in jaw clenching, teeth grinding and tightened neck muscles, thereby affecting, among other muscles and nerves, the 7th cranial nerve which supplies all the muscles of the face .

Many have written to ask me if TMJ (Temporomandibular Disorder) is common with fibromyalgia. TMJ results in the joint (that slides and rotates just in front of the ear)  twisting during opening, closing or side motion movements. The challenges that occur  can be sensitive teeth (no doubt why so many of us have unexplained tooth pain) and earaches. The jaw muscles with myofascial discomfort refer the pain to the teeth and ears,  and can even cause headaches.

The main nerve for the jaw joint is attached to the TMJ disk so that when it is compressed it tightens nerve and blood vessels around the ear and temple , especially if one has stiff neck muscles. Sometimes ringing in the ears (tinnitus) is a common complaint as well.

I have no proof of all of this and I admit to speculation as I am not an audiologist and I have not seen it written or described elsewhere but I have a strong intuition that this is the case for people with fibromyalgia who have increasing low frequency hearing loss. Often background noise, and/or many people talking in a room results in great sensitivity to noise in people with this type of hearing loss.

This is just one more challenge for those of us who grind our teeth, absorb tension in our necks and jaws and suffer from headaches and earaches. Another reason for us to educate our health care professionals and especially our dentists and dental assistants that fibromyalgia does not leave a nerve in our bodies at peace! Furthermore, hearing loss impacts on our daily lives and our personal relationships. Hopefully we will hear more about the complexity of hearing loss and fibromyalgia in the near future.

About Barbara Keddy

I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology. I am married, a mother and grandmother living on the east coast of Canada. I have personally lived with fibromyalgia for about 40 years. I published a book with iUniverse in 2007. This book detailed living with this condition and allowed the voices of twenty women who have fibromyalgia to tell their stories.
This entry was posted in 7th cranial nerve, auditory pathways to the brain, dentists and dental assistants, earaches, Fibromyalgia, headaches, low frequency hearing loss, ringing in the ears, sensitive teeth, sensitivity to noise, sensorineural hearing loss, teeth grinding, tinnitus, TMJ. Bookmark the permalink.

77 Responses to Fibromyalgia and Hearing Loss

  1. Virginia Shidal says:

    Thanks for this commentary on hearing loss. Having been diagnosed with FM and CFS 2 years ago. I now know I had symptoms for many years prior. For the last few years I have been having difficulty with hearing some frequencies, while having sensitivities to even slight sounds at the same time. This has been very frustrating, as I have never had any hearing difficulties before and the audiologist’s testing shows only some mild loss in one ear in very low range. This does not seem to match with the actual difficulty I am experiencing more often with phone rings, voices and other tones, especially with any background or competing noises. Since I do not do anything else environmentally which would damage my hearing, I have wondered about any possible connection with the FM and would look forward to learning more about this subject.

  2. Thank you, Virginia! I startle easily and loud noises, in particular, and strangely, a dog barking(!), for example, can make me actually feel visceral sensations! I know this is related to hearing too as I can hear some sounds that are very, very discreet yet some low voices, like that of my husband (unfortunately)often frustrates me as I sometimes cannot make out the sounds?! I don’t think I have the ‘usual’ hearing loss that can be picked up by an audiologist either! Loud noises like fire trucks or any other siren is extremely irritating to my nervous system. I know they are unpleasant sounds for everyone but my reaction is more than the ‘normal’. I am happy you told this story as I have not heard many comment on this type of hearing issues. Thanks again! Barbara

  3. Really explanatory – continue to spread the word. Looking forward to an update. For too long now have I had the need to get started on my personal blog. Suppose if I put it off any longer I’ll never ever do it. I’ll be sure to add you to my Blogroll. Cheers!!

  4. Go for it, Erik! Good luck! Barbara

  5. Paul says:

    Thanks for this commentary on hearing loss. Having been diagnosed with FM and CFS 2 years ago. I now know I had symptoms for many years prior. For the last few years I have been having difficulty with hearing some frequencies, while having sensitivities to even slight sounds at the same time. This has been very frustrating, as I have never had any hearing difficulties before and the audiologist’s testing shows only some mild loss in one ear in very low range. This does not seem to match with the actual difficulty I am experiencing more often with phone rings, voices and other tones, especially with any background or competing noises. Since I do not do anything else environmentally which would damage my hearing, I have wondered about any possible connection with the FM and would look forward to learning more about this subject.

  6. Me too Paul as hearing loss seems to be common with fibro but no one seems to be writing much about it! It HAS to be more frequent than this but people are just not noticing it perhaps? Thanks for your comments! Barbara

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  8. Thank you Roland!

  9. Sharon says:

    Thanks for the comments. This explains a lot about my own condition. I was diagnosed with Fibromyalgia a few years ago. I have had Tinnitus for many years. Had it checked about 10 years ago and no hearing loss. It is getting louder and more nerve wracking. I have an appt. with ENT this week to check it again. Also I have a toothache that responds to antibiotics, but 3 dentist have been unable to locate any infection. I think you have hit the nail on the head as to the reasons for my symptoms. I don’t know if the ENT will agree but I sure do. Next Question: What to do about these symptoms? What do they respond too? Any suggestions would be appreciated.

  10. Sharon says:

    Thanks for the information. This explains why I have tinnitus and a toothache. Now what to do about them???? Any suggestions would be greatly appreciated.

  11. Hi Sharon: Well, for one thing it is important to calm the nervous system so that our jaws can relax. Deep breathing and meditation are very helpful. Wearing one of those kinds of apparatuses that dentists suggest did not help me as my sleep was so restless that I would throw it out in a half sleep state! I know when I have been tense and had lots of stimulation because I have more tinnitus and tooth pain! My whole face hurts and I don’t hear very well that day. However, after years of clenching my jaws, especially at night it isn’t easy to unclench! I wish I had magic answers…relaxation advice is what others would give but I believe that over-stimulated nervous systems do not repair themselves and it is our life long struggle. In my book the women speak of what they have done that helps somewhat. I wish though that I have a wand that could drive away all our demons! Regards, Barbara

  12. Scott says:

    @#$%! Sorry to open with that, but I was thinking medication was causing low freq hearing loss. Stopped taking it, just made an appointment with my GP. Lot of good that will do if it’s the FM. Hadn’t thought of it as direct symptom (or seen it listed) till now. Makes sense though…I’ve had pretty much every other symptom. Hopefully the fibro’s taken all it can now. Thanks for the post.

  13. Thanks for your comment Scott. My hearing loss is getting worse as I clench my jaw more after a particularly difficult year of dealing with 93 year old parents and their crises! One more thing to deal with:-(
    Regards, Barbara

  14. Kimberly says:

    Thank you for the information. I have been dealing with FM, CFS and TMJ for 10+ years and have been dealing with neck and ear pain for the past three weeks. Today my Doctor said I have hearning loss in both ears due to a nerve problem? When I asked if this was do to FM, the answer was No. It makes since to me as well that this is all connected.

    Thanks,
    Kim

  15. You are so right Kimberly, it makes perfect sense to make that leap from all those issues to nerve damage from fibro! It is going to take a long time for health care professionals to understand that link! But, we have lived it!Keep in touch!
    Best regards, Barbara

  16. Eadie Harley says:

    I have just returned from my Primary Care Physician where a hearing test confirmed a hearing loss that I have been experiencing for the last 3 days. He put me on steroids, and I see an ENT tomorrow. I wondered if the Fibro I have suffered with for the last 10 years might be playing a part in this loss. So I headed to the Internet and found this site.

    I can’t say I’m happy that it is probably Fibro related, but at least I know I’m not crazy.
    Eadie

  17. Hi Eadie: Ohhhh, a steroid is a strong drug! Yikes! If it is fibro related the docs may not know about this connection and pooh pooh the idea. Of course, I can’t prove it is related but with my case I know there is a strong possibility. However, if yours has just recently happened it stands to reason that this is why the steroid med as I believe if it is fibro related it would be a much slower process. Can’t jump to any conclusions this quickly. So, follow your ENT advice and maybe it is only an infection or some other transient occurrence. Good luck and keep in touch! Barbara

  18. Eadie Harley says:

    An update for you, after 10 days of oral steroids and an anti-viral I hadn’t shown any improvement, so my ENT injected steriods directly into my inner ear through the ear drum. Within 24 hours I saw some improvement documented by audiology in 7 days. So I have had a second injection, I believe there has been more improvement, will be tested again in 6 days.

  19. Oh my goodness Eadie: Injections in your ear?! Did it hurt? I must look into that. Thanks for the thumbs up! Barbara

  20. Barbara Robinson says:

    Having suffered with Fibromyalgia for the last 6 or 7 years, I was diagnosed with 40% hearing loss in my right ear. I felt that there was a connection and was not surprised to find this website that agrees with this. I am not sure that my GP or sonsultant will agree with this but I do plan to make them aware. I can also relate to Barbara Keddy regarding load noises – it feels like an electric shock through my body.
    I am awaiting the result of an MRI for the hearing loss and will post the outcome on this site!

  21. Hi Barbara: I can’t find much written about hearing loss and fibromyalgia. However, I intuitively know that it is common enough to be something to watch for as many use a search engine to find this link and I can see there is great interest! Thanks for your comments, Barbara

  22. Jody Bower says:

    i was just informed that this is an issue with FM. i would have never thought about that even though there are so many other symptoms that are so unusual.. feel bad that i have been yelling at my mom to go to the dr bc her cough is so loud and it startles me everytime she coughs and i watched others and they never seemed to be affected by it..its a normal everyday smokers cough and she has it bad at night and i can hear it like she is inside my ear. noises that are everyday noises for others make me jump 50 ft. i put cotton balls in my ears to try to muffle out some of the noise and i am trying not to complain about the tv which is usally on a 32 volume and at 26 it feels like its blasting… and i get anxiety and when i go out into public i get so irritated and i never realized that could be from the noise level. this is so hard to deal with .. Thank God i am finding out that there is a reason this is happening..guess i am going to go get some ear plugs.

  23. Hi Jody: Did you read my most recent blog about misophonia? Those of us with fibro are a strange lot aren’t we:-)? But, like you, loud noises are extremely unpleasant for me! Best wishes, Barbara

  24. Myrna says:

    You all have made my day. I was dx’d with fibro. in 1992 and it’s been a wild ride. My hearing loss is driving me crazy. I can hear some really low tones, like someone’s cell ringing, yet I can’t understand some tv shows and have to use the Closed Caption. I went to the University of Ky. for testing and they said I had some blockage that was keeping the me from hearing/understanding things. They said I was doing an excellent job compensating and that was about all they could do. I didn’t make the Fibro. connection until last week. I had actually gotten better all spring and summer then I started not being able to hear again which made me realize it must be some kind of flare and since I have Fibro. it must be due to the fibro. but I have never heard of it being a symptom. I was glad to see that you guys are experiencing similar stuff. I also hate loud noises. Especially a lot of people talking at the same time. I can’t stand it. Just wanted to chime in.

  25. Hi Myrna: Have you read my book? it sets the tone for all that I write about. Like you I am suffering from hearing loss, worse on some days than others. It is so frustrating but I am beginning to think it is often best if i don’t pay attention to a lot of the conversation that is going on all the time anyway. Less stimulation 🙂 Sorry, I don’t mean to down play this as it is also a great disability for me as well.
    Best wishes, Barbara

  26. Sue Young says:

    Say what??? FM and hearing loss. Two years ago I went to an ENT Doctor, went thru all the tests. Results: There is nothing wrong with your hearing. I was dx’d 4 yrs ago with FM. Also have autonomic neuropathy and many more ailments. Just blame it on FM.

    I read a book, can not recall the author, about FM. After my visit to the ENT doc, I looked in the index and found a
    lead to hearing loss. It read just like my diagnosis, “you go to the ear dr. go thru all the battery of tests, and you get an answer, there is nothing wrong with your hearing”. HELLO! Concidence?????

    So like all the other things that creep on my 71 yr old body, I just add it to the “column” under FM. Oh by the way
    I also have been to my Dentist with “painful” toothaches….Xrays show nothing. Have had TMJ some 10yrs ago.

    Found this website. Now I know I’m NOT crazy.
    Sue

  27. I know what you mean by an old body. I am convinced that aging makes fibro worse! Every day it is something else.Need more meditation, relaxation, less caregiving of older parents, less worry, more joy!I can relate Sue!
    Best wishes,
    Barbara

  28. Carlos SUarez says:

    I have been experiencing the same symptoms as indicated in the various posts. Have had MRI, CT Scan, X-rays and have seen 2 ENT’s. What I have been doing might help some of you out there. 1. Is and Alkaline diet, with lots of water 2. I use both subligual B-12

  29. Hi Carlos: I too use a B12 vitamin among others such as fish oils (Omega) and Vit D. thanks for the tip!
    Barbara

  30. Sarah says:

    Fibromayalgia is so frustrating I have problems with electric light and currently jaw clenching I have had fibromayalgia and cfs for 15 years and it affects everything I do.

  31. Dear Sarah: I agree that this catch all term of fibromyalgia can be very frustrating. Jaw clenching is common often resulting in dental pain. Some people complain that florescent lighting is troublesome. Thank you for your comments, Barbara

  32. Cris says:

    I went to an ENT yesterday and I have hearing loss in both ears and am getting hearing aids. I am 48, I have had TMJ and tinnitus for as long as I can remember. Way before I even knew I had fibro. I clench my jaw at night and have had two teeth crowned because they are cracked. I have shooting facial pain and the dentist says nothing shows up on the x-ray. The ENT is sending me for a CAT scan today to rule out tumors and cysts but I already know that it is nerve pain from fibro. I agree with the others that fibro seems to get worse as you age. It seems like it is just one thing after another now.

  33. Yes Chris: It does seem like one thing after another. But, you are still young enough to be able to reverse much of this with mild exercise, meditation, getting to the root cause of your fibromyalgia through reflection and understanding the reasons why you developed a highly nervous system. It takes hard work and discipline and I am always struggling with it but I am much older than you!
    Kind regards,
    Barbara

  34. pauline says:

    Thank god I found you all . I’ve got fibro and I’ve been driving my family mad one min I can hear the tv then the next I can’t . Also my mobile phone don’t hear it ring and problems sometimes hearing what people are saying . Thought it was me thinking I was going mad . Pauline x

  35. Dear Pauline: No you are not going out of your mind:-) We are all in this together! Hopefully you will find support in many of the blogs on this site. Very best wishes, Barbara

  36. I have been wondering about my hearing for a long time, I am sure my hearing is getting worse. I have been a sufferer of fibromyaligia for a long time and I have noticed I cant hear the television unless I turn it louder. I have problems hearing on the telephone too. I do have problems with my jaw locking and cracking, especially when eating, so perhaps this could be connected. I have a strange problem in my ears at the moment whereas they keep popping, like they do when you have to yawn to get them right. I hope I am not going round the bend.

  37. Dear Lynne: I cannot believe how many are writing in about their hearing loss with fibromyalgia. It stands to reason given how often we clench our jaws and injure our nerves. Do you also have much jaw pain after waking up in the morning? Thanks for your comments, Regards, Barbara

  38. Deborah searle says:

    Wow, thought I was going mad. It’s hard to explain to norms that your hearing is poor in one situation and then you can’t stand the noise in another. I was given a mouth guard for my TMJ well, when I say given it cost me over £345 in moulds and guards which I grinded away within 6 months. Need to get another cause it really helped but its the cost thats an issue. It’s a an ongoing battle I work less so therefore earn less and have to pay for more cause of this stupid illness. Thank you for your post it makes me feel well normal I guess in the fibro world xx

  39. Yes, Deborah: It seems as though this nervous system of ours can play havoc with even our hearing. I wish you good luck and best wishes,
    Barbara

  40. Kathy Barney says:

    Please Help—what kind of DR does one see for diagnosing FM? I basically diagnosed myself to my Pain Mgmt Dr. he put me on Lyrica. That was it, no testing’ no information, Nothing!!!! I need conformation. I’m 53 yrs old divorced female, and have been living and dealing with all the symptons of FM for approx. 7mos. I have seen Pain mgmt Dr,(cerval 3,4,6 & lumber 3,4,6) Neurologist, Neuo-sugeon, Edocrinologist,(Hashmoto Thyroidism) Optimalogist(20/400 each eye) and I see a Counselor weekly(can’t deal with all of this alone)I just need someone talk to). I have had EEG’s, EMG’s, MRI’s, just recently I have a MRA(no results yet). All with-in 7 mos……….I can not cope anymore………..!

  41. Dear Kathy: Your 3 letters were very sad and I am so sorry that these days are so difficult for you. Is it possible for you to join a Mindfulness Meditation group, or a relaxation tpe of exercise like TaiChi or Chi Gong, or light yoga? Unfortunately there isn’t anyoone out there who can do this hard work for you. I don’t say this lightly but the only one who can help ou right now is you. Light exercise, even if it is a smple 5 min walk per day, followed by some form of meditation (daily) would start you on he road to success. Cure may not be possible but alleviating stress, exercising and relaxation therapies would help if you stick with them. This is not a disease in that it is not life threatening. It must be managed by you and you alone. A talk therapist could help but this costs money. The least expensive is what you can do for ourself. I know this because your struggle is my struggle. I wish you good luck and hope you can find some relief with these suggestions.

  42. Terri B says:

    I was diagnosed with FM in 1994. I’ve had 4 whip-lashes and my neck muscles are “hypertonic” and are very hard and taut. The only thing that helps is massage. Up until April 4, my hearing was perfect, almost too perfect and super-sensitive. On that evening, I had a very high pitched sound and severe buzzing in my right ear, then nothing. I went to an ear dr. and audiologist the next day. The Dr. said it was sensorineural hearing loss. I had lost 72% of hearing in my right ear and was put on Prednisone for a week. I still have to go for an MRI to rule out a neuroma. My hearing is getting better, but now I have tinnitus, and get weird sounds in my ear. I now can use a telephone on that ear. Has anyone had their hearing come back after massage, relaxation, etc? Thanks.

  43. I too have the same thing. However, in my case it is getting worse, especially cause I clench my jaw so much. Massage and relaxation techniques do help some but I was too late in life to begin these wonderful ways of managing my nervous system! Good luck to you, Barbara

  44. Zoe cm says:

    Hi all, I, like a lot of you was diagnosed with myocardial syndrome, fibromyalgia and chronic fatigue many moons ago (16 yrs) at the tender age of22….. I have coped really well I think but last few yrs not so well, my hearing has been suffering since I was a child just a very mild tinitus that I still have albeit severely worse today and glad if you know what I mean that I too not going mad. Both my ears are now severly affected and my daily life is becoming more difficult and hindered as I can’t even hear the person who is talking to me most times surely this is not right?!? Hypersensitive is just the beginning… What are we to do when we’re shrugged off …moan over thanks for listening x

  45. Roberta Ellison says:

    Thank you for writing on this subject. I have had fibromyalgia most of my life and I’m 40 now. I figured my hearing loss was do to my health but I have never seen it printed.

  46. Be sure to have it checked out as it may not be due to fibromyalgia!
    Regards,
    Barbara

  47. Ah Zoe: It isn’t easy especially since you are a young woman. I am at the stage myself that I think I need hearing aids. I have clenched my jaws so much over the years that I have damaged the nerves from hyper-arousal of he nervous system. What are we to do indeed!
    Yours in solidarity,
    Barbara

  48. Michelle Eagle says:

    Hi everyone. I’ve had this terrible thing since I was 14 years old. I am 36 now. I lost the hearing in my right ear two years ago. The doc said it was a nerve compression. I’ve always had vision problems, but now I’m experiencing jumping eyeballs. I’m falling apart!!!!!

  49. I too have hearing loss due to nerve compression and also jumping eyeballs! The symptoms seem to be endless of this central nervous system dis-order!
    We have to find ways of calming ourselves as the cure will come from us alone! NOT EASY!

  50. Sandra Laigle says:

    I am glad I found this post. I have noticed that I clench my teeth quite a bit. My husband told me to get an ear test because I am losing my hearing. I of course told him no I’m not. However, upon reflection I probably am losing some hearing. I sometimes only get a few things he says. If I’m good I can fill in the rest. If someone is walking away and talking I get nothing. I know it is not complete hearing loss but it is a pain in the a– like every other symptom is.

  51. My husband says he same thing but I can’t hear him nor when someone is walking away from me while speaking!
    I know for certain mine is nerve damage from clenching! 🙁
    Welcome to my club!
    Barbara

  52. Betty Eplee says:

    March of 2014 hearing loss came suddenly.in the right ear. Primary care DR said, fluid behind the ear. Six weeks later Specialist said permanent hearing loss.

    In 2006 the same thing happened and I had a brain scan to determine source. Before I could go, hearing returrned and I just forgot about it. Scan showed no hidden problem at that time.

  53. Dear Betty: I too have had similar experiences with my hearing. This is an odd condition we are suffering from, hat is certain! Keep in touch and let me know about your hearing from time to time,
    Regards,
    Barbara

  54. Betty Eplee says:

    I was completely down with FM in 1991, unable to raise myself from a chair. After two years of shots meds, etc. I inquired what was the prognosis. No cure only pain med relief was the answer. Not choosing this route for life, I bid “ado” and grateful thanks. I have been doing well with periods of pain and some days not functioning well. Now, in 2014 I had a sudden hearing loss in one ear. No warning pain or strange sounds or other symptoms preceded. Just answered the phone one day and there it was. After seeing the Doctor and having a hearing test…we both looked at each other in disbelief. He didn’t believe me (no warning signs) or I him. He told me no aid or treatment would or could help! I have end nerve loss. I am having a hard time excepting since I am a Gospel singer. I continue on, but not sure how long I will be able to remain on key.

  55. Helen says:

    Hello Ladies, I came across this website this morning as I am always searching for clues, information and may be some answers to the weird and complicated issues that come with having fibromyalgia.

    I believe I had fibromyalgia for years before I was diagnosed. I had all the symptoms, but my GP just kept telling me it was menopause. In 2010 fibromyalgia took hold of entire body. I could not walk, lay down to sleep, sit or even feed myself. After seeing many Specialists I finally found a good Rheumatalogist who diagnosed me with fibromyalgia. My treatment has been pain medication, antidepressants and now incorporating some pool exercises. However, I too have had sudden censory hearing loss first in my left ear. I had an MRI to determine there was no tumor which could have been the cause for my hearing loss. So I have been given no explanation as to what caused my nerve damage. I have lost some hearing in my right ear as well and it was really hard to live like that. I now wear two hearing aids and I am so glad to be hearing better again I did mention to my Specialist if my hearing loss could be associate with my fibromyalgia, but he said it was a seperate issue. I tend to believe that my hearing loss is connected to my fibromyalgia and upon reading about your experiences it only confirms this for me. I agree with you Barbara, it is a very odd conditon we are suffering from, and Betty I encourage you to continue your singing.
    Regards
    Helen

  56. Oh, Betty: do keep on singing! These crazy symptoms of ours can be so frustrating. I told the audiologist about fibro and deafness but she had never made that link! I definitely believe, but cannot prove there is a relationship. I wonder too if there is a relationship between fibro and vertigo? Ah, so much to wonder about.
    Best wishes,
    Barbara

  57. Like you, Helen, I believe there is a relationship as well. We have to keep on with hoping that health professionals will begin to understand these links! Thanks so much for your insightful comments!
    Regards,
    Barbara

  58. Helen says:

    Hey, Barbara thanks for your reply. I think you you are right about the vertigo and fibro. I too suffered with vertigo many years ago and had terrible nausea/vomitting. The dizziness, hearing loss, balance are all nerve related issues which are in turn part of the nervous system. It is such a complex condition that has so many different symptoms. Here in Australia, Fibromyalgia is not something that people are aware of. I do hope that the continued research will one day find some answers. Untill then we will all keep strong and positive in our lives.
    Regards
    Helen

  59. Betty Eplee says:

    Thank you, Barbara. Encouragement is what it’s all about. We need to do just that. State of mind is a real positive or negative with this crazy weird FM.
    maybe together we can make a difference.
    There is a definite link with FM and hearing. Who knows, in our lifetime cure may be discovered.
    A big thanks to all the faithful doctors who try to help us through our pain and dark days, as we wait for the sunshine once again.

  60. Betty Eplee says:

    I don’t think we will ever regain our hearing loss. The trick is to live with it, Not let us effect our life and those around us. It’s just downright scary to think one minute you hear and then………
    God gives us these gifts and for some reason recalled one of them. I am searching for the reason.
    Hang in there Helen

  61. Nancy Rexrode says:

    The same thing happened to me. I have FM and have had it for some time. I refuse to take more then over the counter pain meds for it so I just go about my days the best I can. About 7 weeks ago I noticed a ocean type sound in my right ear. I went to my doctor and over time tried 3 different antibiotics ( which did not work ). He kept telling me that it was fluid in my ear and it would go away. Well not taking that for an answer I have now went to a ENT specialist and had the test done for hearing. I have hearing loss in my right ear and no infection. I go Tuesday for a nasal endoscopy. Until a few minutes ago I did not think about FM and hearing loss being related. I didn’t even mention on my chart that I have fibromyalgia because as soon as I do most doctors roll their eyes and change the subject.

  62. Dear Nancy: I know what you mean. as soon as you mention the word fibromyalgia many health professionals take on that ‘look’ and we are inclined to be disregarded. The ear issues are very frustrating and I doubt that a connection will be made between the two very soon! We just have to keepasking if there is a connection and hoping for the best. What else can be done?
    Thinking of you,
    Barbara

  63. Caroline (Knight) says:

    Dear Friends, after living with fibromyalgia (diagnosed 1997 from symptoms in 1981) and the usual flare ups and wheelchairs etc., I have now found out that I am needing to wear two hearing aids….. went to see about tinnitus (in one ear) still check ups with that part…. but on hearing tests there was significant loss…. I had not linked this with fibromyalgia, though bouts of TMJ would suggest this contributed to it….. it is most frustrating though… after a new GP (after move of house) She believes it is all psychosomatic…. all the in head etc., but falling on these posts has made me feel not so alone, if that makes sense….. I know it all affects us differently but this has stolen the best years of my life… I just hope and pray that one day it will be understood and approached respectfully from our GP’s thank you for being there…. kind regards, Caroline

  64. Dear Carolyn :
    Thank you for your comments. None of your comments surprise me. It seems this demon affects all of our systems and hearing is just one more area of our bodies to be attacked. The idea that it is psycho- somatic is so demeaning to us all. Like you fibromyalgia has stolen the best years of my life. Hearing loss is just one more burden. But, to put this in perspective we do have good days along with the bad and slowly the health professions are recognizing our huge numbers. We have to take this one day at a time, breathe, meditate, go for walks if we can and avoid being over medicated.
    Take good care,
    Barbara

  65. Val Ryan says:

    I stumbled upon this website when I typed “does fibromyalgia affect hearing”! I self diagnosed myself with FM in the 1980’s when I gained much information from American websites on the illness. I ticked all the boxes but then in the UK it was not recognised. Finally about 12 years ago I saw a UK specialist and at last it was finally diagnosed. Some severe symptoms have subsided a little since I retired and I am able to listen and respond to my body’s warning signs. But now like so many others I have developed a TMJ in my right jaw and seen a specialist who has confirmed damage to this joint and also referral to an ENT/Audiologist specialist and confirmed deafness in both ears and going for a hearing aid fitting tomorrow. All very depressing but it is reassuring to know that I am most certainly not alone with my ever increasing list of ailments. Thank you to everyone for your comments they really do help to explain why we seem to be blighted by all these annoying symptoms.

  66. Dear Val:
    I am sorry to hear of your hearing difficulties. Please do remember that: 1) hearing aids are just that, they are aids and you will not have perfect hearing, unlike glasses where you can be guaranteed 20-20 vision! 2) the loudness will often startle you as we have become used to muted sounds and for those of us who respond negatively to loud sounds it is even more difficult to get used to the aids than the general public 3) it takes awhile to get used to something in your ear, especially as we are sensitive to unusual touch.
    Good luck with them!Keep in touch.Wonderful to ‘hear’ from you!
    Barbara

  67. Robin Viens says:

    I was diagnosed with Fibro in 2000. By the end of 2005 I was wheelchair bound until 2009 when I went into remission. 2012 is when I noticed that I was having trouble hearing certain things. When I went to the ENT, they discovered that I have sensorineural hearing loss. Basically it is nerve damage but we could not figure out the cause. I have had no real issues with the Fibro since 2012 so I did not even think it was related. I have scheduled yet another hearing test so I can just be aware of how much more of my hearing is gone. I have lost a lot of the upper and lower ranges, so I can only hear most things in the middle as long as there is no background noise and my ears are not ringing so loud to drown everything else out. I am already well prepared that my hearing loss could progress to total deafness.
    It only occurred to me today as I was driving home from work that it might be related to the fibro. I wonder if any of the medications that are geared towards the nerves could help ie: Neurontin. Not wanting to go back on any of the medications again but if it could at least stop it from progressing, I might be willing.

  68. Hello Robin: Neurontin (Gabapentin) is frequently prescribed for fibromyalgia. I myself was on it for many years. However, it did not help with my hearing issue.
    I am interested to hear you say that you are in remission. How have you accomplished that? Have you not had any issues since 2009? Please keep in touch. This is very encouraging!
    Best wishes,
    Barbara

  69. Betty Eplee says:

    Don’t waste money on hearing wonders. They have nothing to help the nerve endings loss. It is permanent. Except ii and go on with your life.
    I understand you will not loose all hearing and may not even effect both ears.
    I am a soloist of many years and thought it would be over, but no. Half loss in one ear is something God has allowed me to adjust to.
    FMS 1993 Hearing loss 2013 Betty

  70. Robin Viens says:

    Betty,
    I have had days with minor muscle spams and aches, but no major pain or issues since I went into remission. I do still get the fibrofog from time to time. The basic run down of how the remission occurred is this. I was on: fentynal 25 mcg, Fentanyl suckers 400 mcg, oxycodone, darvocet, valum, adderal and welbutrin. During that time there was a recall on the Fentanyl patches because they had a small slit which was causing the medication to get into the system too quickly and was causing people to overdose. I did not know which dosage was affeted but when I started getting really sick one afternoon, I decided not to take a chance and I removed the patch. My doctor verified when my husband called him that I indeed was overdosing and I would have been dead by morning if I had not taken it off. Due to getting a high dose of it, I became allergic to it. Needless to say, I could no longer use that medication. Within a few days, I realized that my pain had decreased so I slowly started taking myself off of the other medications. This took about 6 months to accomplish. But I was feeling better than I had in years. I can say that the best thing that could have happened to me is almost overdosing. The medications were making all of my symptoms worse. Now I only take a low dose sleeping pill to maintain my sleep pattern. Ok. I have rambled on enough for now.
    Blessings,
    Robin

  71. Robin Viens says:

    Barbara,
    I have accepted the loss of hearing in both ears. I am going to the ENT on Friday for my annual checkup. I sing at my church and I love it. If one day I am no longer able to sing that is ok. The doctors are not sure if I will go completely deaf or not. Only time will tell. I was just curious if there was a link between fibro and hearing loss and if the was some form of treatment that could slow down the progression of the loss.
    Thanks!
    Robin

  72. Helen Morgan says:

    Hi I have begun to experience brief hearing losses most days sometimes tinnitus and as though the wind is blowing in my ears. I am also very sensitive of hearing and loud noises cause pain and discomfort. I have CFS fibromyalgia and TMD. All have derived from years of psychological abuse.

    Best wishes Helen Morgan

  73. Ah, dear Helen: I am not surprised that you have concluded that years of psychological abuse have contributed to developing of fibromyalgia. If only the ‘experts’ of fibromyalgia would finally conclude that this syndrome is the result of crisis of some kind in our psyches in the highly sensitive person it would help lay to rest the idea that a disease exists. We have a dis-ease which is quite different from a disease and because of our central nervous system always being on high alert it is little wonder that other systems are affected. The highly sensitive person cannot bear loud sounds. It is little wonder that many of us experience hearing loss as well as many other symptoms that are the result of stress and anxiety in our lives. Take good care.
    Barbara.

  74. Betty Eplee says:

    My FMS started in 1993. In 2015, I had a sudden loss of hearing in the right ear. Test revealed a loss of 35%. The nerve endings were dead…nothing would bring it back or device to help. I thought my Gospel Music, as a soloist was over. Followed by a few bad months, I adapted. Right on key and still singing. Yes, I thank GOD and take each day a day at a time and be thankful for it. Fibromyalgia is not the end of the world only an adjustment.

  75. Dear Betty:
    How right you are! Fibromyalgia is indeed an adjustment! It isn’t life threatening but it certainly is challenging. I am thrilled to hear you are right on key and still singing! It is important that we do the things that make us happy and not spend every moment focussing on our ailments. Your story made me smile!
    Barbara

  76. Jennifer Johnson says:

    I was hoping to not find this information. I was diagnosed 24 years ago, when I was just 19. Recently I had a bad sinus infection requiring antibiotics. A week after finishing my hearing became muffled, yet sensitive at the same time. Went back to the doc and was given a steroid shot and a week long step down course of steroids. I was good after day 3, finished the meds, and a week later I am back to being muffled. I am a Police Dispatcher, so my hearing is essential, I really hope this isn’t permanent. It’s annoying and I just can’t have fibro take away my job, I just can’t.

  77. My dear Jennifer:
    The result for me is that I have had to resort to hearing aids which sometimes help a bit but often do not. Many sounds are muffled, like yours are. It is so frustrating. There is little doubt in my mind that grinding our teeth at night after many years with fibro results in damaging nerves that affect our hearing. I was told this many years ago by a professor who was an auditory expert. She predicted this and it happened. It is indeed discouraging. It seems that fibro knows no bounds.
    I hope you have had time to read some of the other blogs I have written here and done some of the relaxation strategies I have recommended. It is TV that is the most discouraging as I have noticed that speaking face to face is easier as I guess I have developed a better strategy for watching for
    facial cues. In your line of work that obviously is problematic.
    I believe it is sleep that is relaxing that is the most helpful. Again, yours is a stressful job and I can imagine sleep is not easy for you. I hope you can find some down time that will help somewhat. It doesn’t do any good for me to encourage you to avoid stress as your profession IS so stressful.
    Very best wishes,
    Barbara

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