If you are like me, the curse of being able to smell horrible odors several minutes before your friends and family is something with which you are forced to live. When one of my “Fibro Kitties” uses the litter box I’ll know it long before my husband does. Its just another blessing from this “gift” we call Fibromyalgia! (Excuse the sarcasm, sometimes its the only way to cope with the absurdity of these symptoms.)
For years I attributed my crazy ability to notice scents and odors that others didn’t to my mother being deaf. Her keen sense of smell is not unlike other people in the deaf and blind communities. When one of our 5 senses isn’t there, the others become heightened. She always pointed out when certain smells were offensive to her. I just assumed that my olfactory palette developed to be stronger than most because she made me aware of smells others didn’t notice. As I learned more about this illness, I realized that I was not the only one who had this increased awareness.
A fellow Spoonie/Fibro, Esta of the site Fibromyalgia Facts, Fictions, and Life stories, writes about the sensitivities in relation to our illness. When going through her list, smell is the one that really jumped out to me.
“… We also as a group, tend to be very hyperactive, to smells. That means, to take a walk down say, the detergent aisle, with all its assorted chemical smells, is literally enough to make us ill. Someone who has over done it with their perfume or after shave, is likely to make us gag. We will be the first person to notice that the milk is just about to go sour or that the garbage can is getting “sweet”.
Although smell is a difficult sensitivity for me to deal with on a daily basis, the others she discusses make an immense amount of sense. She outlines the results of a survey by FM/CFS/ME RESOURCES which interviewed “over 800 people, world wide, most of which (92%) are women, with an average age of 44 .” (I cannot speak to the scientific validity of this survey as she doesn’t cite the source, but anecdotally I feel the reported findings are compelling.)
I grew up in a small beach town in Southern California, which meant countless days were spent at the beach with family and friends. I remember shivering on a 75° day, wrapping myself in a towel and begging my parents to take us home. It made no sense that anyone would be freezing cold when it was a gorgeous Santa Barbara day! I was often told to stop being dramatic and quit complaining so much. Now I know that my nerves were hypersensitive to the breezes that everyone else was enjoying as relief from the sun. Validation at last!
Temperature – Cold & Heat:
“One of the primary reasons most state they are sensitive to this, is due to the fact that cold increases pain. Most persons with FM also tend to have other joint muscle issues, which do not tolerate cold very well… However, it goes way beyond that.
Most people with FM make comments that even temperatures that most people consider just “cool”, are felt as cold . It’s as if the body’s ability to maintain temperature, were compromised.”
Feel less crazy now? Well, you should! Its not just in your head, but in your physiology. There are actual biological reasons for being sensitive to both heat and cold.
“The primary thing in our bodies, which maintains body temperature and enables us to withstand changes, is the hypothalamus. Which the body uses to create ‘Thermoregulation … the ability of an organism to keep its body temperature within certain boundaries, even when the surrounding temperature is very different. This process is one aspect of homeostasis’
By and large, for those of us with FM, homeostasis does not work very well, so we cannot tolerate shifts in temperature. The body cannot adapt fast enough, or in some cases, it cannot adapt, at all. The issue that is suspected to be to blame for many of the problems seen in FM…”
If you experience sensitivity to light, and therefore have migraines as one of your lovely symptoms, this may be part of the explanation for you. For me, the debilitating chronic dry eye is a symptom I battle daily.
“Most people with FM report having light sensitivity. Most prefer dim light and can barely tolerate bright sunlight. Now, part of this is due to CMS trigger points interfering with the ocular muscles around the eyes, creating for most, a case of chronic dry eye. But again, the matter goes far beyond the mechanical lubrication of the eye. As some report just the opposite effect, to where in the eye is over full and tearing all the time. In point of fact, most state their eyes alternate between both states of too dry or too wet…
‘Sensitivity to light: Some FMS people can’t go anywhere unless they wear dark glasses. Some of us have Seasonal Affective Disorder (SAD) and need light to prevent depression. Part of this problem in FMS may be due to the hypothalamic-light connection’ Research “
Ugh! This is another big one for me. To this day I have a ridiculously negative association with lawn mowers. When I hear one it makes my skin crawl. I can remember being in my bedroom while my dad or brother mowed the lawns, and plugging my ears with my fingers or paper towels. It upset me in a way that made no sense. To this day, my husband does the vacuuming while I go into another room and shut the door. The odd part of it is that I was never bothered by the family get-togethers on my mom’s side which often consisted of loud, rambunctious “debates” in Spanish.
However, my deaf mom not always being aware of her decibel levels. . . now THAT was tough. For me, I think it has a lot to do with pitch. Higher pitches get under my skin in a way that doesn’t necessarily make a whole lot of sense. But let’s be honest, does any part of Fibro make sense?
“The body seems to react to sounds as if they were a bodily assault. ‘Most people have what’s called an inhibitory response to repeated sensations. That means, once they’ve felt something and their brains have determined it’s not a threat, the response to it gets progressively weaker. According to studies, those of us with Fibromyalgia don’t get to tune out these “harmless” sensations. Instead, our nerves over-react to them, sending more and more pain signals at every contact and instead of filtering those signals out like it should, our brains seize hold of them and crank up the volume.’ About FM/CS …
We all are born with this kind of “selective” hearing. But once you develop FM, this built in filter gets broken somehow. We go into sensory overload, in fairly short order. This creates, pain, nausea, headaches, and irritability. For some, this effect is so bad that they become literally “phobic” of being around large groups or in noisy environments.”
“While some types of pain (like muscle or joint aches) are very common, tactile allodynia is ( considered ) rare. It’s associated mainly with pain conditions including neuropathy, postherpetic neuralgia and migraine along with Fibromyalgia. It comes from a malfunction of specialized nerves, called nociceptors, that sense information about things like temperature and painful stimuli right at the skin. For some reason, our nociceptors start telling our brains that just about any sensation is painful. Researchers believe it is part of the central sensitization associated with Fibromyalgia, chronic fatigue syndrome, and a handful of other conditions.” About FM/CFS
This is a very good technical breakdown of what of what happens through touch to us Spoonie/Fibros. Although the neurological explanation may make sense to us, it tends to really hit home when we hear practical examples that we ourselves have experienced.
“Most of us tend to wear loose clothes. We rip out clothing tags like they were the enemy. We often give up on things like bras or even panties, for the simple reason that wearing them, hurts. For many of us, our entire wardrobe centers around this kind of pain.”
While shopping back home with my mom a couple months ago, I noticed she was a little taken aback when every adorable dress or backless top she thought would look great on me came with my explanation as to why I couldn’t wear it. Strapless bras are painful, shorts and skirts often mean I’ll be cold and uncomfortable. Dresses usually require strappy heels or sandals which I can’t wear because they cause so much pain to my legs and back.
The way I explained it to her was that when one spends so much time in pain, one’s clothing can’t add to that. Having easy to wear tops that don’t require much thought or “extra equipment”, such as slips, special bras,etc. is what I lean towards. I can wear heels for special occasions, but only when I’ll be sitting the majority of the time and will have my car to get home. Wearing heels on the subway can be done, but at great expense of my flare-free time. Choosing easy clothes that can be worn with tennis shoes, but still dressed up with jewelry or cute hairstyles is the way I’ve tailored my style.
“Our nerves at the skin level are so hypersensitive, that even standing out in the wind, can literally be felt by the body as pain. As one woman put it ‘it’s like walking around with a perpetual sunburn’.
This is something I struggle with on a minute to minute basis. I can be shivering cold one minute, and literally sweating and clammy only a few later. It can be a burden for those around me when I can’t opt to sit outside at a restaurant on a “beautiful” day. It may be perfect for others, but I wouldn’t be able to eat in between the shivers. Not only would it be tough in the moment, but the tension from the cold usually causes flares. I do my best to be prepared, living by the mantra “dress in layers”. But it still effects those around me no matter how hard I try to plan ahead and “deal”.
“We are unaware of it, but we injure the body all the time. ( And for those of us with FM, make that 5 times as often as your average person ) slight dings, bruises, scrapes, cuts. excess pressure that crush’s skin cells, etc. Happens all the time. Now, in a well functioning body, most of the time, such ‘minor’ injuries go unnoticed and heal on their own, without the person ever having been aware of them.
For a person with FM however… We have pain signals that persist, long after the original injury has healed.”
You may read this and think to yourself, “Wow! I’m not crazy?” Or, you may read this and just feel more upset about the hand you’ve been dealt. I believe that depends upon where you are along the spectrum of acceptance. (Check out this post to understand what I mean.) My hope is that in gaining a better understanding of why you feel the things you do, you may be better equipped to explain to those around you why you may need a bit more compassion and patience from them. If nothing else, I hope my readers feel a sense of comradery in knowing they are not the only ones experiencing these strange, but very real, symptoms.