You expect to have painful muscles everywhere with fibromyalgia (FM). Even if your
discomfort fluctuates from day to day, this symptom is always present. The pain of FM is
amplified as though the volume control knob is turned up as high as it could go. But
there is much more to FM than just the pain. Chances are, you have other sensory-related
symptoms that are roaring off the charts and making your fibro all the more difficult to
Take, for example, the sensory-related symptoms below. Most patients with FM will
recognize them as an added source of annoyance.
- numbness and tingling sensations in your extremities
- swelling sensations - feeling as though one's limbs are made out of gelatin
- burning skin - just like a bad sunburn, despite no redness or visible rash
- sensitivity to loud sounds (you are always asking family members to turn down
- odors bother you much more than they do everyone else (your sense of smell is
- bright lights bother you, maybe even contributing to your headache, especially
if you are walking in a colorfully lit shopping mall
- dry, burning eyes - sometimes they hurt so badly, they burn, but your doctor
can't find anything wrong with them and has ruled out medication side effects
- Sensitivity to tastes
With regards to eye-related symptoms, Daniel Clauw, M.D., director of
the University of Michigan's Fibromyalgia research center, says he is working with an
ophthalmologist on a project to show that people with dry, itchy eyes whose tests are
normal have a regional equivalent of FM (it's like irritable bowel or
interstitial cystitis of the eyes). "This disease spares no area of the body, which
only makes sense because we get sensory input from everywhere, including the eyes."
Clauw believes that there is an alteration in the way the brain processes all
sensory-related input, not just pain. And, just as your pain signals are amplified in FM,
so are all of your other sensory inputs for touch, sight, sound, and smell. This would
mean that whatever is causing your pain to be amplified is also linked to the
magnification of your other sensory symptoms, and a research report points to this
A study by Michael Geisser, Ph.D., also at the University of Michigan, shows that the
pain levels of FM are directly tied to these other annoying sensory symptoms.1
Patients with a greater number and severity of sensory symptoms (such as those listed
above) tended to predict higher pain scores, a greater number of physical symptoms, and
reduced functional capacity. In other words, the more your sensory symptoms become
amplified, the worse your FM will become.
Treatments geared at dampening the sensory amplification process may be more effective
than tending to each annoying symptom individually, says Geisser. He suggests using
medications that operate systemically to tame the signals in the nervous system, rather
than to use local or topical approaches to relieve the symptoms.
"Certain agents that may activate the spinal cord's pain inhibitory system, such as
Savella, may also
normalize sensations in other sensory pathways," says Geisser. "For example, studies have
shown that these drugs also decrease the number of subjective symptom complaints in
chronic pain patients."
Medications that work to help filter out the number of sensory signals being amplified in
the nervous system may also be beneficial. Examples include Lyrica and Neurontin, which are similar drugs in the
anticonvulsant class. If you have already tried these two meds to treat your FM pain but
they caused too many side effects, one might still work to ease your amplified senses
using a different approach. Consider talking to your doctor about taking a smaller dose
that is less likely to cause side effects and only take it at bedtime. Either drug should
aid with sleep, while potentially toning down those annoying sensory symptoms.2
While Geisser has shown that your level of FM pain is closely tied to how many sensory
symptoms you are battling, there are other research questions he would like to explore.
Can the above mentioned medications used to treat FM lead to improvements in auditory
function tests so that patients are less sensitive to loud sounds? What about the
medication effects on other sensations, such as responses to odors or visual stimuli
(especially bright lights)? Answers to these questions could help zero in on the best
possible treatments for these pesky symptoms.
Sensory Overload: Sources and Strategies
Sensory overload is a significant part of many people's experience of CFS and FM. When
we ask our groups to tell us what things make their symptoms worse, sense overload usually
ranks in the top four, sometimes as high as number two. (Being overactive is the
perennial number one; other common answers include poor sleep and stress.)
* Taking a Time Out
People in our groups reported using two strategies in response to sensory overload. One
is to remove themselves temporarily from the situation that triggered the overload. For
example, when at a noisy social event, they might go outside, take extra time in the
bathroom or retreat to a bedroom to lie down for a while.
One person who takes such breaks at family gatherings says that by using them "I'm able to
recover in less time and I don't experience the achiness and fatigue that used to follow
family gatherings." Another person says that she has trained her family to recognize if
noise generated by visiting grandkids gets too great that "grandma is apt to suddenly
disappear and go into her room to lie down."
If taking a short break is not enough, the second strategy is extended rest. This means
spending time lying down, often in a dark and quiet environment, until the sensitivity
ends and symptoms return to a normal level. One person says that if sensory overload
triggers brain fog, she lies down and does a meditation. She reports that usually such a
break "is enough to clear my head and I'm ready to go again."
In addition to treating sensory overload once it appears, people in our groups also
report using two forms of prevention: avoidance and setting limits.
The most common form of avoidance is the creation of a quiet and orderly home environment.
This usually involves keeping the amount of noise in the home to a minimum, for example by
avoiding use of the TV and/or radio as constant background noise.
One person says, "I keep the TV off and I only play music when I am giving my full
attention to it." Others report keeping light at low levels, sometimes through the use of
dimmer switches. Another way to control sensory overload in the home is through order or
reducing the sense of clutter.
Quite a few people report using earplugs and sunglasses to avoid sensory overload. The
former may be employed to aid sleep and to cut noise while in groups. One person says, "I
carry earplugs in my purse and regularly use them at the movies and sometimes in church
when the music gets loud."
Another way to control overload from sound is through the use of headphones, usually by a
spouse. One person reports, "my husband was given a pair of remote headphones that he can
connect to any device around the house. Not only has this given him the pleasure of the
sports etc wherever he wanders but allows me to share the sitting room when the TV is on!"
Some people use noise cancelling headphones to reduce the amount of noise they hear.
Staying with one's limits is another way to avoid sensory overload. Many people reported
being less vulnerable when they were inside their energy envelopes, which includes getting
adequate rest. One says, "I have found that often I can handle more when I am less
fatigued." Another reports that she does better "if I am well-rested, so I think that is a
significant way to limit the effects of things that would typically cause sensory overload
In contrast, another person says, "When I have pushed myself to do more than I should or
if a lot of activity has been around me, it all intensifies."
Another form of prevention is to rest up ahead of big events, like the person who says,
"when the family gets together, I rest for several days beforehand." Others report that
they minimize the effects of too much sensory information by responding quickly when they
observe overload: "When I am tired or really pushing things my sensory overload is worse.
The best thing that I can do is to drop what I am doing and totally rest."
A final prevention strategy is to do one thing at a time. "I try to only do one thing at a
time with very clear lists of what I will achieve next e.g. Put on a load of washing, pay
the phone bill, have lunch. I try to complete the first task and then go and look at my
list for the next task so I am not trying to hold all the tasks in my head at once."
* Setting Limits
In addition to avoidance, another form of prevention is setting limits. Some people set
limits on the amount of time spent at various activities, such as the length of sessions
on the computer, the length of phone calls or amount of time spent watching TV. Other
people report putting limits on socializing, for example getting together with others only
in small groups or for limited periods of time.
A third type of limit is to select settings carefully to avoid crowds and noise. This may
mean going to restaurants or movie theaters during slack times or sitting on the perimeter
in public places such as theaters. Finally, it may involve putting limits on interactions
with specific people, either avoiding entirely people who are negative or animated, or
limiting the length of time spent with such people.