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 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.

image1 (5)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 odour 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 odours 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 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 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 rosesimage1 (7)

 

8 comments

  1. Jacquie Raffile says:

    I cannot stand to be around a crowd of people making a lot of noise. I was in a noisy restaurant in New Orleans and had to leave after just sitting down because of all the people talking. I hate having my hair done unless I can find a place doing just two people at a time and the noise and light are low. Thank God I’ve found a place like this. When we redid our hardwood floors, I had to stay in the guest apartment because of the smell. It goes on and on.

  2. Barbara Keddy
    Barbara Keddy says:

    I’m with you Jacquie! Even violent images on TV or at movies can set off alarms in my system. We need peace and quiet, but stimulation too of course, as long as it is calming.
    Thanks for your comments. I can relate to them.
    Barbara

  3. Deidre says:

    My Dr sent me to an occupational therapists that specializes in Sensory Integration Disorder and after 6 months of therapy I am now able to tolerate the smells and noises I once could now. I had to listen to a series of CDs that played therapeutic Listening sounds and music that was made to desentize my brain to stimuli. I think it actiually helped the Fibro some too.

  4. Barbara Keddy
    Barbara Keddy says:

    Wow, Deidre: This is an excellent piece of information. I have not heard of this therapy, but I will certainly look into it. It sounds much like the cds of Dr. Jon Kabat-Zinn and others who are Mindful Meditation instructors, but with a specific focus on smells and noises. This is all about training the brain which I have written about elsewhere! Thanks for this piece of valuable information.
    Best,
    Barbara

  5. Barbara Keddy
    Barbara Keddy says:

    Thanks Gary! You are absolutely right. The diagnosis of fibromyalgia is almost a shameful one with so many not believing it actually exists. This in spite of the fact that it is a universal syndrome. Thanks for this website!
    Regards,
    Barbara

  6. Patti Green says:

    About four times per year, I wake up with a pervasive smell of windshield washer fluid in my head and within a few hours my muscles become very achy, as if I have the flu. At the same time I have extreme exhaustion. This usually lasts for 2 weeks. The very minute the phantom smell goes away, my muscle aches and exhaustion go away. I am aware of three triggers to this condition – egg, being in a room with leather furniture and being in the house of a smoker. Are these episodes of fibromyalgia?

  7. Barbara Keddy
    Barbara Keddy says:

    Wow Patti: It doesn’t seem like its fibromyalgia but then a health care professional would have to assess if you had other symptoms of this dis-ease. It may very well be but you’d have to check it out. Interesting that it only seems to happen four times a year. Keep in touch and let us know what your health provider thinks.
    Regards,
    Barbara

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