“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
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
Thanks Richard…good tip! Barbara
Very interesting!! Is there any data relating what percent of the fibromyalgia population has misophonia?
Maybe you have fibromyalgia and misophonia independently of each other? Just a thought.
You could be very right!!
Barbara
I certainly do not know of any! If you find information on this please let me know.
Regards, Barbara
I have both, and have never heard of the two combined before. Please tell me more.
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
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.
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
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.
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.
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
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.
Thanks!
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..
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
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.
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
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.
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