Fibromyalgia and Sounds/Noises: Misophonia

“One of the greatest sounds of them all-and to me it is a sound-is utter,complete silence“, Andre Kostelanetz

There is a new (at least to me) term called “misophonia” (Wednesday, September 7, 2001 , Life section, The Globe and Mail) in which sounds can cause severe reactions in people ( article written by Joyce Cohen). It has occurred to me that many of us with fibromyalgia experience extreme discomfort over certain sounds. For me it is the clicking of heels on pavement,  a dog slurping its food, chewing loudly by others, humming of a motor or heating system, a baby crying, boom boxes…the list is endless. Even more alarming is an unexpected loud noise, such as a motorcycle or firecrackers. I realize that most people can find many of these sounds alarming, but for the person with misophonia, the auditory nervous system is in overdrive. Cohen writes about one  19 year old woman who becomes distressed with some specific sounds enough to “make her chest tighten and her heart pound”. I believe that those of us with a hyper-aroused nervous system suffer universally from anxiety and not only do we experience a visceral response to violence , but to anything that startles or is grating to the ears and can raise our anxiety level.

Dr. Sonia Lupien  et al from the University of Montreal is doing research on the “larger amydala”. My view is that those of us with fibromyalgia have an unusually large amydala (were we born with it or does it develop through repeated frightening life events?) which “scans for threats in the environment” to the extent that many sounds evoke anxiety or emotionally upsetting episodes. We are sound sensitive and while it may seem hopeless it seems to me that like other ways in which we can train the brain, here too we can learn to work with this sensitivity.

It is said that “Family links are common” (Cohen), and in my case it seems so as my father was constantly complaining about certain noises or sounds that did not seem to affect anyone else. However, it is discouraging to read that Aage Moller, the neuroscientist at the University of Texas (quoted in Cohen) who specializes in the auditory nervous system, believes there is “no known effective treatment”. In the case of fibromyalgia I believe we can create new pathways that would allow us over time to deal more effectively with misophonia. Dr. Moller “believes the condition is hard-wired, like right, or left-handedness, and is probably not an auditory disorder but a “physiological abnormality” that resides in brain structures activated by processed sound” (quoted in Cohen). If this is so then we CAN create new ways of changing the brain and for that reason I am hopeful.

My strategy is to fill my day with lovely sounds that bring about joy instead of irrational fear, such as certain music, and listen to people who have soothing voices (like Leonard Cohen!), or try to hear rippling water in a stream, soft laughter and other pleasing experiences that soothe my ears. Not always easy, and I still cross the street if I hear the clickety clack of high heels on the pavement! I try not to rage inside at the woman for wearing such dumb shoes and I escape as quickly as possible from the awful sound:-)

The image I have presented here is from the UK Misophonia Support Group

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 auditory nervous system, Dr. Aage Moller, Dr. Sonia Lupien, Fibromyalgia, harsh sounds. Bookmark the permalink.

32 Responses to Fibromyalgia and Sounds/Noises: Misophonia

  1. Richard says:

    Thanks for helping to get the word out there. I would encourage your readers to also check out http://www.soundsensitivity.info for extra reading.

    Thanks

  2. Thanks Richard…good tip! Barbara

  3. Adah says:

    Very interesting!! Is there any data relating what percent of the fibromyalgia population has misophonia?

  4. pt says:

    Maybe you have fibromyalgia and misophonia independently of each other? Just a thought.

  5. You could be very right!!
    Barbara

  6. I certainly do not know of any! If you find information on this please let me know.
    Regards, Barbara

  7. Des says:

    I have both, and have never heard of the two combined before. Please tell me more.

  8. I would if I knew more but I think it is related to central sensitization that is always present in fibromyalgia?! See my other blogs, Regards, Barbara

  9. Thanks for this great article. It now explains why I have so many problems with just about any kind of noise. I’m getting to the point when it comes to symptoms I should be asking what symptoms do people with fibromyalgia not have as there seems to be so many that we do have. I’m going to look at your site to see if you have a video I could share with my readers.

  10. Hi Jean: Unfortunately I don’t have any videos on my site, but hopefully the many articles I have and the book will explain a great deal about fibromyalgia. Best wishes, Barbara

  11. Jeannah says:

    Wow. All this time I just thought I was easily irritated…something wrong with my tolerance. I also have tinnitus (akin to the sound of locusts in my ears…many years now, I mostly tune it out). I could take someone’s head off at the sound of loud crunching or slurping. And just like you have said, loud sounds (a motorcycle, door slamming, etc.) Glad to know I have good company. Thanks for sharing this information.

  12. Ashley says:

    Good to know I’m not the only one. While I have many irritating sounds I also experience pain from sounds.

    I’ll often feel a sound wave travel through my body…literally feeling a wave of pain coupled with a painful ringing in my hands & head. I find it can be any sound that interrupts a silence – I’m horrible at night. The worst was my body’s reaction to a blacksmith hammer on tv – that caused such a awful shock like sensation – I screamed out loud, as I felt like I’d just stuck a fork in an electrical outlet – and my body buzzed for a while after.

  13. Yes, Ashley: I understand completely. It is even the sound of someone’s harsh or shrill voice that grates on my nervous system! However, among the many other aggravating ‘symptoms’ I would not rate this the highest! Best wishes, Barbara

  14. I would like to honour you with the Fibro Fighter Award (http://fibromodem.wordpress.com/the-fibro-fighter-award/).

    Congratulations! Please feel free to recommend other bloggers whom you think worthy of this tribute.

  15. Nets says:

    I’ve was diagnosed with Fibro almost 9 years ago, and suffer from SPD from childhood, which Misophonia is a part of.
    The combination and deterioration of both condition has put me in quite a desperate place.
    I’m looking for a support forum/group for people with both (as the comments here show, they are out there), as I find that each individual support group doesn’t really ‘get’ what the other condition does, and there’s no where to really speak freely and know I’m making sense to other people..
    Is there anything like that out there? I’ve not got the energy to start a support forum, but would be the first to join if one opened..

  16. Hello: This is a unique comment to this site. Sometimes I wonder if fibromyalgia is not a mild form of SPD. Given that you have both it is making me more and more curious. I don’t know of any support groups and in particular in your area. Where exactly are you living in case someone wants to begin one or did you mean for it to be strictly on line. Your comments have inspired me to do more research. I would love to know what your childhood was like if you ever felt so inclined to disclose. Very best wishes, Barbara

  17. J Hendrickson says:

    My nerves are set on edge by many of these same noises, and my startle sensation is at times at a peak. A dear friend is so sensitive to noise that it can feel like it’s stabbing at her ears. She found the term “hypercussis”, she thinks that’s how it’s spelled. Since she doesn’t have a computer she says she’s unable to do further research on it. Has anyone else heard of this? She says she doesn’t have FM, but I wonder if that’s true. I use soft earplugs called Hearos to sleep, when flying, or if I need to concentrate on something and either or both of my hard of hearing housemates has their TVs on. I get them at drug stores Also, what is SPD? Thanks for putting a name to this hearing sensitivity.

  18. Thank you so much for your comments. SPD is a condition that can affect children or adults and it is due to the ways in which the nervous system receives messages from the senses. How these messages are conveyed to the brain can make a person behave in unusual or inappropriate ways.
    It must be very difficult for you living with people who have hearing loss. Startling easily is very annoying and I can relate to that! Best wishes, Barbara

  19. Angelica says:

    I just watched a clip about Misophonia on the doctors and I thoughts, THAT’S ME! I could never understand the RAGE I felt at certain sounds, in particular the clanking of people’s utensils on dishes when they eat, chewing sounds, lip smacking, gulping sounds and so on. My husband recently quit smoking, and replaced it with eating sunflower seeds. The cracking of those dang seeds makes me literally want to wring his neck! I actually stopped going to church with him because of it! Rather than smoke a cigarette in the car, he cracks those dang shells open all the way to the church and by the time I get there I’m in NO MOOD for church anymore, I want to KILL! (kinda funny, but seriously NOT!) I have been so down on myself because of this, it causes feelings of HATE I cannot understand! I also have fibromyalgia and was diagnosed with extreme noise sensitivity but no one told me about misophonia. He also makes weird marbly sounds when he swallows and slurps his coffee, then smack smacks his lips. This has become so bad for me, I’ve had to eat in another room most of the time. I don’t tell him how it enrages me because it sounds so stupid! At least now I know I’m not crazy or just plain mean. I seriously cannot control these feelings of rage that I have to hold in, which cause extreme anxiety. I wear earplugs to the movies when we go due to HIS popcorn chewing (and those around us, plus the noise of unwrapping candy…oh it p.o.’s me off!)

    I wish there were a cure, cuz honestly I can’t take much more! But at LEAST I know now I’m not the only one and it seems it is yet another symptom of FMS.

  20. Hi Angelica: Phew! You have this condition to extreme. I can sympathize. it is doubly unfortunate that so many of your husband’s traits are difficult for you. This mysterious ‘symptom’ can be so dreadful. Keep in touch if things improve and let us know how you are doing.
    Regards, Barbara

  21. A new book has been published summer 2013. It’s called, Sound-Rage. A Primer of the Neurobiology and Psychology of a Little Known Anger Disorder (Chalcedony Press, 210 pgs) and is available from amazon.com.uk and amazon.com.

    The book provides compelling evidence that “misophonia” is a developmental, neurological disorder, and presents detailed information about trigger expansion, emotions, cognitions and therapies.

    In Section I, Symptoms, Stories, Diagnoses, it describes the lives of sufferers as they confront triggers throughout the day. Section II, Neurobiology, presents an overview of how the brain processes information, specifically the triggers. There is an in-depth look at brain circuitry and multi-sensory processing. This section seeks to explain from a neurological, sensory perspective how triggers expand, from one or two auditory triggers to many auditory, visual, and olfactory triggers. The thoughts and associations that accompany the anger and pain are addressed in Section III, Emotions, Cognitions, and Therapies.

    The book explains how the brain’s “hard-wired” circuitry interprets stimuli as pain and affects behavior and emotions; how processing of visual and auditory stimuli overlap in the brain and result in creating new triggers; and how the brain uses mimicry to induce empathy and reduce the distress caused by triggers. The book also discusses why the disorder is routinely misdiagnosed and how it is unique among all disorders. It also addresses why exposure therapy that is used with OCD worsens the symptoms while cognitive behavior therapy (sometimes in conjunction with exposure) is highly effective in reducing them.

    I hope this helps.

  22. Thank you so much. I have just now ordered the book and will write about it on a blog when I have read it,
    Barbara

  23. Tanya Maddox says:

    Wow! I think there might be a genetic link because my father and grandfather were very sensitive to the same sounds I am, lip smacking or swallowing sounds. It would enrage them to hear these sounds and when I hear them, I get very anxious and want to get up and throttle the person producing them. Its a very intense feeling of anger. Plus I can’t stand the sound of silverware clinking against plates and bowls or of my own heart beating in my ears. My youngest son can’t tolerate the sound of someone scratching. My older son has mild OCD. My sister can’t stand the sound of styrofoam squeaking. I have also been diagnosed with fibromyalgia, chronic tinnitus and in my twenties, a severe panic/anxiety disorder that would often send me to the ER. I experienced panic attacks with strange auditory and visual Components. MRIs, EEGs, CT scans ruled out seizures or brain tumors. Occasionally I smell things when I first wake up that no one else does like burning toast, animal urine, strong perfume or deodorant, or roses to mention a few. In general I have a very acute sense if smell. I also have a sleep disorder called sleep paralysis. I have always wondered if all these things were somehow connected.

  24. Your book on sound rage is very interesting. It has me thinking about the sounds and especially the sights that send me into an inner rage, like heels clicking on pavement and then seeing the women who wear them. I hope others will read it and comment on it. Thank you for breaking through this not very often written about syndrome,
    Barbara

  25. Tanya, this just reinforces my view that there is so much that is unexplained associated with fibromyalgia. I did buy and read the book on sound-rage and it answered many questions for me. I also have a sleep disorder and a very keen sense of smell. I think it is all connected to our hyper-aroused nervous systems!
    Keep in touch,
    Barbara

  26. Emi Kawase says:

    Ever since my Fibromyalgia really began 2 years ago, my life has turned upside down. I’ve developed a ridiculously long list of symptoms and side effects. Every medical issue I already had multiplied by 3, and new problems arose.
    One of my greatest fears is noise- either loud or repetitive usually. I can’t stand bad quality speakers for my music, it hurts, but with headphones, it sounds better. But I don’t even listen to music, which was my life, anymore.
    I cannot stand light. Especially bright fluorescent light, and when there is more contrast, like at night. Wwhen I’m more symptomatic with severe head pain, the light senzitivoty is worse.
    I get angry over any chemical or foreign smells, like perfume & cleaner, and I have been pissed off for years at the way my dad chews like a horse and slurps and gulps loudly.
    I can’t handle any stress or extra duties I should be getting done. It stresses me to think about phone calls to make to customer service.
    I can’t do anything normal, and I havent seen a friend in months. Phone talk is too annoying. An extended time of conversation or arguing or thinking makes me exhausted and aggravated. I’ve gotten in arguments with everyone.
    I never ever had such rage and anger inside me, before I got sick.
    I have too many issues to list now, but the sensory sensitivity was just a common side effect of Fibro, I thought. Although it gets extreme. Tonight I learned about Misophonia. And I feel freaked out. Frightened. Is this what I have? It sounds too familiar.
    I get so angry at my dad every time I hear his footsteps or him mowing the lawn and eating and talking, and the way he even knocks on my door.
    I have isolated myself as much as possible, because I can’t deal with people anymore. Nobody understands whatsoever. I get so overwhelmed and I’m soo emotionally sensitive also.
    I got in a little argument on Facebook, and now I completely quit social media. I can’t commit to any project, and I have little motivation, except for many creative ideas- which take money and effort.
    I talk and write too much. I don’t know why. My comments are always the longest. I often erase them afterwards…
    Is this misophonia, when I am overly sensitive to every single sense? At 1 point even my touch was weird, and now I can only eat very mild foods.
    I keep just watching youtube and stuff. I am extremely hesitant about showers and going outside… basically I am the exact opposite of the person I identified with.
    And I just don’t know what is going on. And I’ve become nocturnal on most days.

  27. Dear Emi:
    Yours is a sad story and my heart goes out to you. While many of us have those intense reactions to most of the stimuli you write about yours seem to be completely immobilizing you. On the positive side writing and talking about your current life is healthy. Nonetheless, it is preoccupying you. It is certainly time for you to seek help so that you can begin to engage in life again. Along with a good therapist movement, like walking, Tai Chi or Chi Gong, and meditation and perhaps even yoga would be very beneficial. Begin by taking small steps, such as a 5 minute routine of meditation, followed by a 5 minute walk, slowly building up. Living with your father suggests to me you might be very young. Now is a good time to explore past trauma and the impact it has had on your adult life. Please keep in touch. Life need not be as restrictive as yours currently seems to be.
    Very best wishes,
    Barbara

  28. Emi Kawase says:

    Thanks for your reply. I wish I was younger. I’m in my early 30s, on disability, with tons of medical and credit card bills. I was already on disability for my mental illness before I got extremely sick with this fibro and everything else. So in a way, I’m very thankful for that.

    I try to ignore the fact that I’m missing out on so much. I focus on bettering myself mentally and physically and emotionally.
    Luckily, I’ve endured enough extreme hardship to be able to somehow get through this. I give others life advice. Not the other way around.

    I don’t know if this hypersensitivity is lifeling or temporary. I don’t know if I have misophonia if all of my senses are affected. My old life is over for now and because of my DBT knowledge and skills, I know to accept and keep looking towards the future while living mindfully.

    I have a lot of big ideas and goals and creative aspirations. I have much to offer to those who suffer, and I plan on eventually co tributing in a much bigger way to their cause… as an advocate for mental health.

    I’ve taken.a break from therapy in order to explore different avenues of alternative healing… all of it is too expensive for me.
    I just spent months researching and getting together natural and organic ingredients and essential oils.
    My plan was to experiment and make DIY skincarw products and some healthy foods to share with others, and to help out my body. I wish someone had suggested this before in the past 20 years of medical problems. Well it goes deeper than that but my chronic headache began 20 years ago.
    ….Anyway, I finally got the essential oils, and the smell is too syrong for me and made my head hurt worse. I’m gonna hold off on my plan. I have a couple other plans. I never stop, although I have failed in every single thing I’ve tried to do in the past 2 years.

    I have seen over 15 doctors in the past year, and by now I’ve learned that much of modern medicine is simply a hoax. It’s kept me sick and never helped me. So that’s why I’m digging deeper.

    I’ve seen a therapist for almost 2 decades, as well as many many hospitalizations and programs. I’ll be ok. I’m doing ok and surviving. I doubt most people could be as ok as I am now for my situation. I’ve had practice in dealing with extreme hardship. Many others haven’t.

    Ok. Well thanks for your advice. Those are all things I’ve done or had planned to do. But things keep being cancelled due to weakness and my severe symptoms.

    Ok I’m too tired but I made it through about an hour of dinner before feeling overwhelmed. It’s Thanksgiving. Tomorrows my birthday. I bought these bright fairy lights for my own personal celebration. They made me sick yesterday so I gave them away.
    I decided to quit being disappointed. It’s a bit useless to drown in it. One day to mope and that’s it. I’m done with it.

  29. Denise Robson says:

    Hi, I’m a U K female, in my 60s and for years have been suffering from a long list of seemingly random symptoms. TMJ, irritable bowel, headaches, confusion and joint aches, to name but a few.
    I also can find myself stressing out at normal sounds, like people swallowing etc.
    All these symptoms keep leading me to fybromyalgia websites, but my GP says they are not connected and that I have arthritis. But the pain comes and goes quite quickly and may not come back for weeks.
    I gave up dairy and soy foods and do feel much better, do you think I could have fibromyalgia as my Grandfather suffered from fybrositis?

  30. Dear Denise: I often wonder if what the generations in the past called fibrositis, and rheumatism were the same as fibromyalgia? It is certain that this mysterious hyper aroused central nervous system condition of fibromyalgia has many symptoms in common with such syndromes as chronic fatigue, PTSD, Gulf War syndrome and other labels from which people suffer who are highly sensitive. The symptoms of arthritis are often similar with regard to pain especially but I would suggest you delve further into the fibromyalgia question with your GP.
    Thanks for checking into this site. Over 110 blogs for you to read here to see if they sound familiar to you.
    Best wishes,
    Barbara

  31. Denise Robson says:

    Thanks Barbara, it makes me feel less of a hypochondriac when I know others have similar conditions, cheers, Denise.

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