By Madeline Vann, MPH
Sensitivity to environmental stimulation, including bright lights, loud noises, and even certain smells, can make living with fibromyalgia particularly challenging. You might wake up each morning wondering what new trigger may exacerbate your fibromyalgia symptoms.
“I deal with everything on a day-to-day basis,” says Stephanie Parker of Dover, Del., who believes her symptoms are consistent with fibromyalgia but has not yet been formally diagnosed. The symptoms keep her from participating in daily family activities, such as watching her kids’ ballgames in the afternoons.
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Tina Pringle, who was diagnosed 16 years ago with fibromyalgia, says that her fibromyalgia symptoms have been overwhelming at times. “The symptoms all merge together, and because of the fatigue and brain fog, everything becomes a maze of sheer confusion,” explains Pringle.
The United Kingdom resident says her eye doctor identified her light sensitivity, but it’s her sensitivity to sound that’s most troubling. “Loud bangs, a child crying, loud music, shouting, dogs barking, and my worst annoyance, whistling, are all an issue,” she says. “The noises resound in my head like a clanging cymbal and cause my whole body to tense up.”
As her tension grows, so does her fibromyalgia pain, and she has to retreat to a darkened room to relax. Her reaction is particularly problematic at home, where her teenage daughter often loves to play loud music and behave in typically boisterous adolescent fashion.
Noise is just the beginning of the sensory anguish that might be contributing to your fibromyalgia pain. People living with fibromyalgia report:
Chronic pain and tenderness
Increased sensitivity to touch or pressure
Increased sensitivity to loud sounds
Increased sensitivity to unpleasant smells
Increased sensitivity to temperature changes
Increased sensitivity to certain flavors
What’s Going On Inside Your Head
This heightened sensitivity may be difficult for you to understand, much less explain to friends and family members who see no outward problem. The uncomfortable and painful sensations of fibromyalgia may be part of your brain’s unusual way of processing pain, suggests fibromyalgia researcher Benjamin Natelson, MD, a neurology professor at the Albert Einstein College of Medicine in New York City and author of Your Symptoms Are Real: What to Do When Your Doctor Says Nothing Is Wrong.
According to a study published in the Archives of Physical Medicine and Rehabilitation that compared and analyzed reports from women with rheumatoid arthritis, women with fibromyalgia, and women without a pain syndrome, those with fibromyalgia were much more likely to report intense, unpleasant responses to sounds, smells, tastes, and tactile sensations.
Another study, published in the journal Pain Research and Treatment,suggests that changes in brain chemistry among people with fibromyalgia may be linked to sensitivity to stimuli such as sound and smell. Imaging studies have provided visual depictions of this altered response to sensations. In some respects, the brains of people with fibromyalgia may be hyper-responsive to even the possibility of pain or discomfort, Dr. Natelson says.
Researchers have also tested tissue samples and found elevated levels of inflammatory markers in the skin of people with fibromyalgia — which may be linked to hypersensitivity to touch. Touch sensitivity is real for people like Pringle, who says that there are times when even holding hands with her partner is too painful to bear. Clothes that are too tight, massages, and even light touches all ratchet up her pain and stress. To make matters worse, Pringle says she occasionally even flinches involuntarily when touched by others, which can be hurtful to those around her.
What to Do About Fibromyalgia Symptoms
How can you address a problem that might stem from your brain’s wiring? Here are some practical steps you can take to manage these sensory symptoms:
Work with a supportive doctor. “If your doctor doesn’t believe you have fibromyalgia, get a new one,” stresses Natelson. Pain treatment will be most effective, he says, when you and your doctor are on the same team. Three prescription medications have been approved for treating fibromyalgia and could help you manage your fibromyalgia pain and reduce your hypersensitivity.
Be active. A review of exercise as part of fibromyalgia treatment, published in the journal Rheumatology International, showed that aerobic exercise may offset pain and minimize tender point sensitivity. Natelson advises gentle physical conditioning. His prescription: “Walk for 30 minutes every other day at about 1.5 to 2 miles per hour.” This increases blood flow to the muscles and tissues. Very gradually, increase your pace to about 3.6 mph. This level of activity “seems to downregulate pain perception,” Natelson explains. Walking outside is ideal, but if you’re sensitive to temperature changes, light, smells, and other sensations, start a walking program inside your home or at the gym.
Avoid your triggers. As much as you can, control your environment so that you limit potential causes of discomfort:
Ventilate your home well to remove strong smells.
Consider earplugs or noise-canceling headphones to minimize or eliminate loud sounds.
Take care of your skin and reduce irritation by using gentle products and avoiding temperature extremes, such as very hot or very cold water.
Wear loose-fitting clothes and dress in light layers that you can remove if the weight of your clothes starts to irritate your skin.
Set boundaries. When her sensitivity to light is especially intense, Pringle simply explains to family members that she can’t watch TV with them right at that moment.
Create a retreat. On particularly difficult days, a comfortable, cool, darkened room might be a soothing place to relax and recharge.
Wear sunglasses. Inside or out, if you feel sensitive to light or certain patterns, put on some shades and give your eyes a break.
Fibromyalgia symptoms that affect all your senses can make every day a struggle, and when you experience difficulty managing your sensitivities, you may be tempted to stay home and avoid socializing and being outside. Even so, Natelson says this is not a good strategy in the long run. Instead, work closely with your doctor to develop strategies that limit your exposure to certain triggers without preventing you from enjoying the world around you.