Fibromyalgia and Sense of Smell
A study out of Tel Aviv indicates that those with fibromyalgia suffer from a diminished sense of smell. Yet, many with fibromyalgia report a heightened sense of smell.
There has been much research showing that those with fibromyalgia have overactive heightened senses in many areas. Does the hyper vigilance to touch and other stimulus not apply to smell? Since I began experiencing symptoms of fibromyalgia, I’ve found that I can often smell smells that no one else notices, or that I’m more sensitive to smells in general. Other reports seem to indicate that I’m not alone in feeling that I have a heightened sense of smell with fibromyalgia.
In this study the researchers compared sense of smell in 24 Fibromyalgia patients to 20 patients with Systemic Sclerosis (SSc) as well as to 21 healthy controls. The patients were tested using the Sniffin’ Sticks kit which presents odors via a pen-like device.
The first stage established a threshold, three sticks were presented and the participants had to identify which of the three contained the odor. Of the three sticks, one was odor-less, while the other two contained varying levels of the odor.
The second stage gauged participants ability to distinguish between odors by presenting three sticks in random order; two contained the same odor and the third with a different odor. In stage 3 participants were asked to identify an odor out of four pens.
A maximum score of 48 could be obtained through the three test stages combined. A score greater than 30 is considered a normal sense of smell. Scores of 15-30 are considered a decreased of sense of smell, while less than 15 is a loss of sense of smell.
The Fibromyalgia group had an average score of 29.3 +/- 5.4, while the SSc group had an average score of 32.1 +/- 4.2. The control group had an average score of 34.6 +/- 2.5. These differences were statistically significant at this level; however, when you look at the individual breakdowns (threshold, ability to distinguish, and identification) there were no statistical differences.
Both the Fibro group and the SSc group had lower overall scores than the control group.
A large percentage (42%) of the Fibro patients displayed decreased sense of smell (hyposmia). Only 15%of those with SSc and 2% of the healthy controls showed decreased sense of smell.
The researchers were unable to make any connection between decreased sense of smell and reported levels of Fibromyalgia severity.
I see a few problems with this study, one is the typically small number of participants. This is a problem in many of the studies related to Fibromyalgia. It’s very difficult to get an accurate picture of anything when your sample size is small.
The second is that they don’t explain the third stage at all, so I’m unclear on what that stage involved. Did the four different pens each have a different odor? Did only one pen have an odor?
Do you think #Fibro has affected your sense of smell? Share on XIt seems like most people I hear from feel that, if anything, fibromyalgia has made them more sensitive to smells. That has always seemed to be the case for me.
References:
Amital, H., Agmon-Levin, N., Shoenfeld, N., Arnson, Y., Amital, D., Langevitz, P., & … Shoenfeld, Y. (2014). Olfactory impairment in patients with the fibromyalgia syndrome and systemic sclerosis. Immunologic Research.
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Darlene says
Hi there,
Yes I agree Julie. My sense of smell to chemical products and certain perfumes I can’t take. I feel they overwhelm me and I cough and can’t hardly breathe. I have phantom smells too. I smell things many times that my husband doesn’t. Tar is a big one for me. I can’t breathe and makes me want to be sick. If there’s a street being paved I have to stay inside. It’s only through reading this information you have written that I realize it’s my fibromyalgia. Thanks for this. I was wondering what was wrong with me.
Rebecca says
My sense of smell, and with it my sense of taste are just plain unreliable anymore.
Sometimes they appear to be heightened, but sometimes I smell things that aren’t there.
Sometimes they are completely dulled.
Sometimes all I can taste is salt when the food tastes perfect to everyone else.
Sometimes there’s an unpleasant aftertaste that no one else notices.
I simply can’t rely on what my nose and palate tell me, and for a baker, that’s scary and frustrating as hell!
Georgette says
I think those with Fibro and heightened sense of smell are “reacting” like a MCS issue. But smell and reacting are two different things. I am fortunate I don’t really have MCS although Clorox and other cleaning products bother me more than when I was younger with Fibro. But my sense of smell has decreased along with sense of taste.
So I think a reaction to smells and odors and having a keen sense of smell are two different things.
Donna says
I know this article is a little old but I have to post that I too am way sensitive to smells and don’t agree with the study findings. I am so sensitive, that I can actually taste smells, good and bad, and often have to get the heck out of some places before I vomit. All my senses are very heightened but especially in relation to chemicals, gasoline drives me insane. Not only does gas burn my eyes and overwhelm me with the smell for hours afterward, but I can taste it in my mouth as a numb feeling sets in all the while I didn’t even go to the gas station, my husband did hours ago and he washed his hands! I also have a strange thing that happens with certain plastics such as a the tops of coffee creamer bottles….just touching them makes my fingers feel numb and I can taste a chemical plastic taste in my mouth. There are other things I can taste when I touch them but the coffee creamer bottles are the most noticeable and happen so fast. I haven’t met anyone else with these kind of strong sensitivites.
Julie says
Wow. That sounds awful. Do you wear gloves or do anything to cut down on the smells?
Donna says
I don’t wear gloves but use my sleeves a lot or the end of my sweater to touch things. I don’t know what to do about the smells other than hold my breath and get away as quick as I can!
Johann says
Hi All
My sense of smell has diminished and increased at the same time. Certain smells really stand out like the cleaning products used in my office yet things like food and my childs dirty nappies (thank goodness) I cant smell at all. It has affected my sense of taste aswell. I was diagnosed with Fibromyalgia a few months ago and have been coping pretty well. I didnt know that smell was affected until now.
Julie says
Johann, I’m sorry you are dealing with all this craziness too! It’s amazing how much is affected by Fibro (everything it seems).
Toni says
Fibro has definitely increased my sense of smell particularly of chemical products, such as perfumes and cleaners. I’m not sure if it has affected my sense of smell with other non-chemical things.
Julie says
Hey Toni! Thanks for stopping by. It’s been really interesting to see the comments on this study as we are all so different. I’ve noticed many saying they pick up “phantom” smells, and others (like you) say that they are over-sensitive to certain smells but perhaps less sensitive to others. Much like everything else with Fibro, we are all unique. I do wonder what the scents were they were using in the study, is there a range of scents that perhaps we are less sensitive to, while there’s another range that we are more highly tuned to?
LouisVA says
I too have some smells that really set me off such as many cleaning products, onions, and garlic; however, I think I’ll keep an open mind because if my sense of smell has been diminished on other aromas, how would I know?
Julie says
Hi Louis, you are right it may well be that there are some scents we are more highly tuned to, and others that we don’t even know we can’t smell anymore.
Flamingo Fan says
My sense of smell is very heightened since fibro. Some smells will make me gag whenin pre-fibro days, I would not have had a second thought.
Julie says
That seems to be the general consensus for many of us. The comments on this topic have been very interesting (and quite varied). Thanks for sharing!
melissa says
This can’t be. My sense of smell is acute. In fact, it was one of the first 2 signs I had that something was very wrong. I have a distinct memory of being able to smell the plastic shelves in the new fridge when the fridge was closed and I was in another room. That heightened sense corresponded to when my allergies (which had improved quite a bit over the years) came back with a roaring vengence. I can smell everything – I was able to smell my nephews infections before anyone else and was able to warn my brother to take him to the doctor. Each infection was then caught quickly. What sucks is that so many smells make me violently nauseated. It’s like to torture to have a heightened sense of smell when so many things make me want to retch.
Carol says
I don’t know, my experience has been very much a cross from what you’re saying and what this study is suggesting. My smell sense over all is much less than most of the people around me. BUT, there are times during flare-ups and my period where I can smell Everything much more clearly (sometimes to the point of it making me feel sick) than the people I am with.
Julie says
Seems like for a lot of us the “sense of smell” is over-sensitized just like the rest of us when Fibro flares up.
Donna says
I’m with you Julie. I’m the complete opposite to this study. I am constantly doing my husband’s head in by smelling smells that he can’t. Certain smells I can’t handle either, they are too over-powering
Julie says
Drives me nuts that there are smells I will pick up around the house that my husband doesn’t seem to notice.