Misophonia in Fibromyalgia and CFS

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August 13, 2018 - By M G Rana, MD.

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There is a new (at least to me) term called “misophonia” in which sounds can cause severe reactions in people. 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.

Hyper-aroused nervous system

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 suffers 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.

Triggers of misphonia

Scant research has been done on misophonia, but what has been done suggests that it’s linked to:

>Tinnitus (ringing in the ears,) which is common in both FMS & ME/CFS;
>Two areas of the brain which research links to FMS & ME/CFS – the insular cortex and anterior cingulate cortex, which process pain, anger, and sensory input;
>Dysfunctional structures in the central nervous system and autonomic arousal(“fight-or-flight” response,) which is consistent with theories about underlying mechanisms of FMS & ME/CFS;
>Anxiety and depression, which are common in FMS & ME/CFS;
>Obsessive-compulsive disorder (OCD,) which some research suggests may be more common in us.

A lot of misphonia appears to revolve around bodily sounds. Along with the ones I’ve mentioned, fingernail clipping is a common trigger. Nobody knows why so far.

Hypersensitivity

Hypersensitivity is believed to be a core mechanism of FMS and ME/CFS. It means that our bodies react strongly to all kinds of input – noise, bright or flashing lights, and crowds of people, strong smells, a chaotic environment, or multiple things competing for your attention. Our brains appear to have a hard time processing a lot of input at once, possibly because of dysfunction of the neurotransmitter serotonin. Some researchers believe we have a problem in our brains with what’s called inhibition.

Inhibition

Inhibition helps your brain filter out things that are unimportant. When you answer the phone, it should help you ignore the television or your family’s conversation. It should help you ignore a repetitious noise, like a loud beep. It should, after a short time, stop you from noticing the buzz of fluorescent lights.

However, our lack of inhibition means that we can’t tune those things out. That means our senses bombard our brains with information, and our brains can’t handle it all. The result is that you can’t focus your attention on things that are important. It becomes hard to think, so you may forget what you were doing or frequently lose your train of thought.

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It can also result in a panic attack, which can involve a pounding heart, sweating, trembling, dizziness, tingling, and fear. Later, you may have increased pain and/or fatigue. Panic attacks can sometimes lead to a major symptom flare. Over time, you may begin to fear to have panic attacks when you encounter situations that have triggered them before. That can make you afraid to go to certain places or put yourself in particular environments or situations. This is one way in which our illnesses can lead to isolation.

Misophonia is such an alien concept it can be hard for non-sufferers to comprehend

To most people misophonia simply doesn’t make sense. Sound causes pain, frustration, anger? Really, is that true? It like being told that the hat you are wearing on your head is causing someone else physical pain. That’s how strange it sounds to people who don’t have or aren’t familiar with the disorder.

There are some elements of misophonia that people without the disorder can relate to instantly. It’s the secondary feelings like anger, frustration, fear and upset which we can feel during a misophonic episode. Misophonia is not an anger disorder. The key bit to note here is ‘chronically repressed anger or rage’, or in other words, stored up anger.

This is a different disorder altogether. There is no more anger ‘in’ someone who has misophonia than there is ‘in’ someone who hasn’t. This confusion, while understandable, is extremely detrimental for sufferers. It stifles our progress in explaining and developing treatments for the disorder. It also makes it much harder for parents and loved ones to help.

What we can do about it?

We don’t yet know much about treating misophonia. Some people report that neuro feedback, cognitive behavioral therapy, and general stress management can help. It seems to me that the important thing for us at this stage is recognizing it so we can try to manage it.

If you get a better understanding of what your triggers are, you can work with your friends and family to minimize your exposure to those sounds, or, when you are exposed, you can use relaxation techniques to mitigate your reaction. It’s also something you can talk to your doctor about to see if he/she has any suggestions. If you’re diagnosed with it, you should also be able to get reasonable accommodation to help you deal with it at work.

Avoiding certain situations

Avoiding certain situations may become necessary for you. For example, if a crowded grocery store is a common trigger, you may need to shop during slow times, such as early in the morning or at night. (See what else can help with grocery shopping.)

Avoidance can be necessary but it can also become a problem if you find yourself avoiding too much such as any place that might be noisy or crowded. If you find yourself becoming isolated by avoidance, or missing things that are important to you, you may benefit from professional counseling.

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