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Fibromyalgia: “what’s that smell”?

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Reprinted with the kind permission of Barbara Keddy.

“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 which 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!  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 in a shop that does cosmetic nails or some hair dressing places can be overwhelming. It can be the body itself reacting to triggers which 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 which 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 in 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 FM, 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 the worse sense of smell and it impacted on taste. They used Sniffin’ Sticks test as their ‘instrument’ for 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 of our own lives.

 
Stop and smell the roses.
 


About the AuthorBarbara Keddy, BSc.N., M.A., Ph.D., Professor Emerita, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada, has lived with fibromyalgia for more than 40 years. Barbara has been interested in social justice issues throughout her professional career, with particular focus on women’s health, resulting in her book Women and Fibromyalgia:  Living with an Invisible Dis-ease

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4 thoughts on “Fibromyalgia: “what’s that smell”?”

  1. IanH says:

    WE must not be confused by taste/smell sensitivity and poor sense of smell. The “sensitivity” has a consequence such as nausea, vertigo, mild tremor, blurred vision, weakness or even increased pain. This is what tells us there is a hypersensitivity, not “Wow that is a strong smell”.

    This confusion is very common in people who do not understand MCS.

    So there is not really inconsistency in the research. A person’s sense of taste could be diminished or less than a “normal” cohort but still very sensitive to the substance producing the smell.

    Secondly, while “smells” and “tastes” can be nauseating it is not the same as the symptom changes by chemical sensitivities or specifically a substance causing a smell. We smell because we take in molecules of a substance. These molecules pass through our nasal and upper respiratory tract and on into the lungs. Research has shown that we do possess “sensors” of a variety of substances in our bronchioles – early detecors of invasive chemicals.

    This statement “I hate the smell of aftershave, any perfumes and cologne but love the scent of the natural oils of patchouli and sandalwood”

    sounds like a preference of smell rather than anything to do with hypersensitivity, unless the author is saying that aftershave/perfumes increase their FM symptoms.

    Alcohol is an easier “toxin” to understand. Most people with ME, CFS and FM cannot tolerate much alcohol, typically around 50ml of wine or less (at 12% alcohol this is about 5ml alcohol, little more than a teaspoon) ) will make such people nauseous, weak, fatigued, sleepy or have increased pain. For some these symptoms project into the next day or worsen sleep. (People with MCS/FS/FM are cheap to take out for drink)

    The rapidity of symptom onset/increase from alcohol is not easily explained by a liver reaction but more likely due to a neurological reaction ie a hypersensitivity.

    Some clinicians have found these reports of hypersensitivity to be unbelievable and more evidence of a psychological disorder but consider the research which has shown us the respiratory sensors, which are TRP channels.

    Chemosensory TRP ion channels in the respiratory tract: role in toxic lung injury and potential as “sweet spots” for targeted therapies.

    http://www.ncbi.nlm.nih.gov/pubmed/23532495

  2. Niaggi says:

    I have fibromyalgia and my sense of smell definitely has changed. I can’t stand the smell of fish now. It’s so bad I now can not eat any kind of fish or sea food. I used to love shrimp lobster haddock but I just can’t eat it anymore. Noise bothers me ,sometimes it sets off a panic attack. Bright lights bother me. Some materials I can’t wear becaus it being up against my skin makes an uncomfortable feeling. I can’t say pain but close. I think everything about me has changed with this fibromyalgia. I am definitely more sensitive. I cry at the drop of a pin and get mad the same. The doctors don’t know what it’s like because they don’t have it and testing just a few people doesn’t give accurate results. They say it doesn’t get worse over time… Well it does. I didn’t just wake up one morning as bad off as I am today it has gotten worse over the years. I think there are a lot of people that would agree with me.

  3. BrendaTownes says:

    I love to read that there are other people out there that have some of these same crazy things that I have. It is so hard to explain this to people that don’t have it. And harder to tell. Someone you love I can’t handle the smell on clothes once they go out and come back into the house or room. Have a dog for 7 years and can’t handle being in the room with it. Oh I cry sometimes to just get it out of my system. But sometimes I can’t cry and sometimes I can’t stop crying. It’s an on going battle sometimes it’s so hard to live with. But I have kids and grandkids and someday I want to have great grandkids. I’m 61 yrs old and was diagnosed with fibrositis when I was 24. It’s been a long painful life. I thank God everyday for this life I just wish it could be a way to do something. Tired of meds and loose clothes and lonely life we live. ???? somebody help us.??

  4. BrendaTownes says:

    Im the same way about fish and seafood loved tuna can’t even have it anymore.

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