The smell of fibromyalgia
 

My husband swears that he can "smell" my fibromyalgia. When I'm flaring, he says I smell different and that literally he associates the smell with fibro. It's not typical body odor, or an unclean smell, as even after showering he says he can still smell the difference between my normal scent and my flaring scent. He says it doesn't smell bad so much as "wrong" as in "doesn't smell like my wife."


To be honest, I thought he was nuts, because I usually can't smell it, but today I did and asked hubby and he said yes, he noticed but didn't want to say anything, because he knows it embarrasses me when he tells me, "fibromyalgia has a smell."

So has anyone else noticed or been told they smell different during flares?

Wow! I've never heard that before! So, does your husband catch your fibro-scent before you feel a flare up coming on? That would be a valuable asset!

Wow. I can honestly say I have read a lot about fibro since my diagnosis a few years ago, but I have never heard of that. As far as I am aware, I don't smell fibro-y. This is interesting, though. I've heard that mother animals can sense or sometimes smell if their baby is born with something wrong, but if he can smell it, he has some cool talents :D

Normally women have a much better sense of smell, but hubby's nose is amazing, especially for identifying ingredients in a dish in order to duplicate a recipe.

According to hubby, by the time the odor is detectable, he's usually noticed other flare symptoms (it took him a while to make the association, he says). There have been many times though that he has noticed the smell before I noticed I was flaring. At best, it's an "early detection" tool rather than a predictive one.

That I have smelled what he's described a couple times makes me wonder whether service dogs could be trained to predict or identify fibro flares (the way some can sense seizures and cancer).

For us it's most useful (at least since I started believing him) when I don't realize I'm flaring or when I'm underestimating the severity of the degree of cognitive impairment from the fibro fog.

I did some searching, and apparently this isn't an entirely unknown phenomenon. I do wish I could smell it more reliably, because it really bothers me that I might smell strange and knot know it. Hubby claims it's not a bad smell, just different, but I get the feeling from his actions that he's not being entirely honest (he's a lot less likely to cuddle up close, for example).

Originally Posted by kaplods:
Hubby claims it's not a bad smell, just different, but I get the feeling from his actions that he's not being entirely honest (he's a lot less likely to cuddle up close, for example).

Is it possible that he just avoids that out of fear he might hurt you or make you uncomfortable as he thinks you will have a flare-up?

Originally Posted by Quirky Chick:
Is it possible that he just avoids that out of fear he might hurt you or make you uncomfortable as he thinks you will have a flare-up?

That's quite possible. He has his own chronic pain issues as well (a genetic joint problem he inherited from his mother), so that tends to be an obstacle. He's also a bit OCD in wanting everything to follow a routine or schedule, and anything "different" or out of the ordinary will bug him to no end, just because it seems out of place or sequence. To him, out of the ordinary is quite stressful even when it's a good thing (he would hate a surprise party, everything has to follow a schedule or a plan).

I love him dearly, but I'm the opposite in that regard. Our goals and values are quite similar, but we take entirely different paths to get there.

Originally Posted by kaplods:
That's quite possible. He has his own chronic pain issues as well (a genetic joint problem he inherited from his mother), so that tends to be an obstacle. He's also a bit OCD in wanting everything to follow a routine or schedule, and anything "different" or out of the ordinary will bug him to no end, just because it seems out of place or sequence. To him, out of the ordinary is quite stressful even when it's a good thing (he would hate a surprise party, everything has to follow a schedule or a plan).

I love him dearly, but I'm the opposite in that regard. Our goals and values are quite similar, but we take entirely different paths to get there.

I can understand what you mean, mostly. My mother has OCD and hers was bad when I was a little kid. She had to have certain structures and routines. For instance, at night she had to go check all doors and windows; she had to check them a specific number of times, and she had to lock and unlock the door locks a number of times to make her feel it was done right. I know it can be different from person to person, but routines can play a big part. But I am sure he doesn't avoid the physical contact (cuddling, etc) due to you smelling bad - I get the impression that that's something you might wonder about. I can honestly see it being him just trying not to hurt you. Sounds like he's a pretty nice man. :smug:

Originally Posted by Quirky Chick:
I can understand what you mean, mostly. My mother has OCD and hers was bad when I was a little kid. She had to have certain structures and routines. For instance, at night she had to go check all doors and windows; she had to check them a specific number of times, and she had to lock and unlock the door locks a number of times to make her feel it was done right. I know it can be different from person to person, but routines can play a big part. But I am sure he doesn't avoid the physical contact (cuddling, etc) due to you smelling bad - I get the impression that that's something you might wonder about. I can honestly see it being him just trying not to hurt you. Sounds like he's a pretty nice man. :smug:

Yeah, he really is. He's one of those guys who looks big and scary, and you never quite know what he's thinking, but he's generous and loyal to a fault.

That's interesting. I've never heard of that before. You learn something new every day. Also congrats on the weight loss! I'm very impressed!