Fibromyalgia and issues with
Sensitivities, sight, sound, touch and smell
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Being Hypersensitive, to all manner of things, is common when you have FM ... Via self reports, we know this is common to nearly all persons with FM. according to a survey done by FM/CFS/ME RESOURCES. That break down is like so ...
*Cold - 71%
*Heat - 65%
*Light - 72%
*Noise - 78%
*Smell - 57%
*Touch - 54%

This is based on a survey of over 800 people, world wide, most of which (92%) are women, with an average age of 44. Taken in order of the listing:

The reasons for these sensitivities vary, but most of them trace back to a combination of nervous system issues and neurological chemistry imbalances. Very often, it is thought to be brought on by hypothyroid and other gland issues, according to many reports.


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 ( See FM is not alone, on site link ) 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 bodys ability to maintain temperature, were compromised. Heat, has the same problems and issues. According to all of the studies done, these self reports seem to be born out, as fact.

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. 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, is hypothyroid issues as mentioned above ( See hypothyroid and FM on site link ) even when the most common tests for thyroid function, come back normal. 

This does not mean they ARE normal however as the most commonly used tests, often miss hypothyroidism. This is a fact that even the medical socity admits to, as each new test they come up with, finds that many more cases which they missed with the last test they had. Hypothyroidism, which if it is present, suppresses the hypothalamus glands function that permits our bodies to regulate all sorts of bodily functions.  Research


Light: 

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,( on site link ) 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. So just the eyes being dry some of the time, is not reason enough to explain the problem. ( more on eyes, on site link )

What is also noted, is the fact that your eyes can change rapidly as far as over all vison. This is evidenced by the sheer number of eyeglass prescription changes most people with FM have to get. The typical, one new set of eyewear being needed every 3- 5 years, narrows down to 1-2 years for most of us.

Some in the medical profession would like to blame these eye changes, which they will admit ARE present, on the many medications we are given for FM. While it is true that some of the most common medications,(on site link) can cause vision problems. This does not explain why people who are not ON those medications ( often on none of them of any kind ) have the same vision problems.( on site link ) So where does this light sensitivity come from ?

Most studies seem to agree that the glands, the pituitary and the thyroid, are to blame. "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


Noise: 

Almost to a person, nearly every suffer of FM reports sensitivity to noise. Not just loud noises either. ( Although those seem to be the worst ) it is also sudden noises ( like how the commercials on TV suddenly jump up the volume ) Or certain kinds of sounds, ticking, droning or other repetitive noises. But no matter what the source of the sound, nearly all FMers report intolerance to it. Often to the point of literally, pain. 

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

Which means that a repeated onslaught of noise, for us means that we feel like we are getting hit on the head, over and over. The brain does not filter them out as it would for a "healthy" person. It is similar to what happens to a person who gets hearing aids for the first time, all the sounds are at the same level and the person has to re-learn how to filter out non relevant noise. 

We all are born with this kind of "selective" hearing. But once you develop FM, this built in filter gets broken. 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. 

We are often, in error I might add diagnosed as having an anxiety disorder, when that is not the case on further review for most people. It might look like it, based on our bodies reaction to being out in uncontrolled environments, but it has little to nothing to do with anxiety, as most people and doctors, define the term. Rather it is an effect of the noise and other stimuli, which then MAKES us tense up and we get all the other signs.  ( See control Vs Isolation on site link )

It has little to nothing to do with our "emotional" state, or coping strategies. ( One way to counter this effect, is take your own noise, I wear headphones hooked to my MP3 player or phone, almost everywhere I go. This makes the other noises, less noticeable. I seldom really  "hear" the music, but I no longer suffer from the headaches and stress, that going out in public used to create )


Smell:

As if all the above were not enough, 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 about to go sour or that the garbage can is getting "sweet". 

Now, much of the over reaction to chemical odors, like the soap aisle, is due to what is called multiple chemical sensitivity (MCS). Which be be internal as well as external. We literally cannot stand too much chemical smell, in anything. ( Now, oddly enough natural odors are not as offensive to us, so it's partly a factor of being more or less, allergic to artificial smells )

But our reaction is, unfortunately, not really an allergy. I say unfortunately as if were really an allergic reaction, we could treat that. No, rather it is the body itself over reacting to stimuli, in this case, smells. Useing scent maskers can help. Take control of the smells in your enviroment, as much as possible.


Touch:  

"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

We are the proverbial " princess and the pea" here. Even things not normally considered painful by most people, can literally hurt. 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 most styles of them, hurts. For many of us, our entire wardrobe centers around this kind of pain.  Dress for the pain

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" Now, the reason for this really has little to do with the skin itself. It's our nervous system. 

"Nociception is the word used to describe how the pain messages travels through the body. During the process of nociception, an injury signals a nerve cell connected to both the site of injury and the spinal chord and causes the production of substance P. In healthy individuals, nociceptive signals are normally countered by antinociceptive substances neurotransmitters like serotonin and natural brain opiates. In Fibromyalgia patients, however, who normally have lower levels of serotonin, pain signals may remain long after the injury has healed. " FM resource information

Now, what that means in plain language ? 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, note the above, due to the neurological dysfunction and the bodies inability to regulate pain. We have pain signals that persist, long after the original injury has healed.

Now, what I postulate is this, since we do such damage on a near daily basis with FM it stands to reason why we have an otherwise rather perplexing symptom, as "allodynia" Which, if taken in this light, the term is not really accurate. It would be more accurate to say, that we have a prolonged, to the point of nearly perpetual skin level reaction, to what are "everyday" pains and pressures. The entire body can be effected in this way.

To sum up, it seems clear to most researchers, that our glandular system seems to be out of whack. Because it is, we get this whole host of symptoms. We tell people these things are going on and most will look at us like we have totally lost our marbles, as for them, their systems are reacting normally, so they do not notice any of this. Ours are not normal. We are not just being " thin" skinned, or crabby ... we honestly hurt on account of all of the above and that pain is real !

Many studies are being done, as we speak, on testing this idea, to see if A: better testing methods can be devised to find hypothyroid and other gland issues and B: better medications to treat them when they are found.