Fibromyalgia: “what’s that smell”?

“For the sense of smell, almost more than any other, has the power to recall memories and it is a pity that we use it so little”, Rachel Carson

Many of us with fibromyalgia are extremely sensitive to environmental stimulation such as loud noises, dogs barking, loud music, bright lights, frightening images, strong tastes, and even certain smells which can be very provocative. While some smells are deliciously pleasant to many the same ones may not be ones that trigger happy memories for others.

Imagine a rose and the strong scent it evokes. What is the brain’s reaction? Hopefully, it is a joyous one.

However, for some this aroma might be troublesome as it could be associated with a tragic or unhappy event. A good smell for some may be a bad odor for others. As an example, for me, the smell of popcorn in a movie theatre makes me nauseous, although I do not have bad memories of movie theatres or popcorn which I quite like! 

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Going into a home where wood is burning makes me cough and there is increasing evidence that home wood stoves are unhealthy, although not everyone reacts overtly to that smell as I do. What are we to make of this other than we with this syndrome of fibromyalgia have hypersensitive senses.

These neurological ‘dysfunctions’ and contradictions of ours sometimes cannot be always understood. While it is easy to comprehend how the perfume or soap aisle in a department store or pharmacy(!) can cause many of us to feel dizzy, nauseated, lightheaded, and/or even experience shortness of breath, why is it that we can sometimes smell a scent that brings about pleasant memories and is happily tolerated?

Another quirk of mine: I hate the smell of aftershave, any perfumes, and cologne but love the scent of the natural oils of patchouli and sandalwood. Hair spray or strong shampoos can bring about a feeling of weakness, and walking into a shop that does cosmetic nails or some hair-dressing places can be overwhelming. It can be the body itself reacting to triggers that may or may not have associations with our past. But, it may also be an energy crisis within our bodies responding to extreme stimuli.

This is the case of Multiple Chemical Sensitivities (MCS) from buildings that are considered ‘sick buildings’  and in which people develop sensitivities from toxic substances. But, I do not work in such places and I live in a city in which government offices, schools, hospitals, and mostly all public places, excluding malls and theatres, are scent-free. So, I should be able to tolerate most scents that are not chemical in origin. Puzzling, indeed!

Have I inherited these tendencies from a mother who responded in a panic to loud noises and would ask repeatedly: “what IS that smell?”. I can tell immediately if a person has been in a place where food has been cooking. Like my mother, this smell on someone’s clothing makes me feel nauseous

So I can say with certainty that odors affect me dramatically, even innocuous ones and that most of my senses are overactive, except my hearing which has deteriorated, but still cannot abide loud noises. But, there is another point of view. While I believe that we have an overactive sense of smell a small study conducted at Tel-Aviv University with fibromyalgia volunteers suggests a different story.

The research took place in 2014 by Amital, H., Agmon-Levin, N. et al with 24 people who had fibro, a control group, and another group of sclerosis patients. The study published in Immunologic Research (“Olfactory impairment in patients with fibromyalgia syndrome and systemic sclerosis”) suggests the fibromyalgia sample had a worse sense of smell and it impacted taste.

They used the Sniffin’ Sticks test as their ‘instrument’ for the testing smell. Since this is a very small sample it cannot be used as proof that this sense is decreased in fibromyalgia. The jury is still out! Many of us do lose our hearing and have no sense of smell or taste. Still, others cannot bear to be touched and many, many more of us are sensitive to light and temperature. It is up to us individually to keep tabs on that which causes discomfort.

These words of Sir William Osler, a Canadian physician educator  (1849-1919) are poignant:” Observe, record, tabulate, communicate. Use your five senses…learn to see, listen to hear, learn to feel, learn to SMELL and know that by practice alone you can become expert”. While he may have been writing this to his fellow physicians we have to become the medical expert in our own lives.

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