If you suffer from conditions such as ME/CFS also known a Chronic Fatigue Syndrome or Fibromyalgia, there is a good chance that you experience sound, light and smell sensitivity. Maybe it’s that overwhelming scent of someone wearing perfume, or the unpleasant aroma at the gas station, perhaps it is the unbearable noise of pots and pans in the kitchen, maybe somebody talking too loudly, or it could be the fact that every time you go outside you feel like someone is shining a spotlight directly into your eyes no matter where you look. Your body is currently in a state of “hypervigilance”, not only do you notice things in your environment that you usually wouldn’t, you're unlikely to have the capacity to divert your attention from them and fear/anxiety becomes a problem too making the problem even worse. When there is a noise in another room, you'll notice it right away, become highly distracted and consumed by it, and probably become both irritated and agitated until it goes away. Our brains detect that there may be a danger or risk and we start to become obsessed with it, this in turn perpetuates our body’s response making the sensory response and symptoms even greater than what they should be.
All of these sensitivities can make life very unpleasant for someone with ME/CFS or Fibromyalgia causing the following symptoms
Trembling and shaking
So what can we do about this? First let’s understand what causes theses sensitivities, possible causes include
Issues with the ANS (Autonomic Nervous system)
Stress-system (HPA axis) issues
Blood pressure irregularities
Unfortunately there is currently no medical test out there to prove and confirm your sensitivities and some people out there even believe that all of these issues are psychosomatic (all in your mind). This is just not true though and rest assured the issue you are dealing with and the symptoms you’re experiencing are very real indeed and whilst there is no cure, let’s look at different ways in which we can manage them.
Managing Light Sensitivity
Well, we know that living your life in a darkened room isn’t an option and you are probably not a bat or a vampire so we need some options to make life more bearable and liveable.
Sunglasses - ensure that you find a pair which has complete UV protection and visible light filtering. Here are some points to consider when buying a pair of sunglasses to help you with your light sensitivity:
§ Polarised Lenses: contain a special filter that cuts reflected glare or sunlight that bounces off smooth surfaces like water
§ Dark Lens: provide the best dark coverage and light filtration however they do not necessarily block out UV rays, which may be the root cause of your light sensitivity
§ Photochromic Lenses: these are very clever lenses which automatically darken and lighten depending on the current light conditions
§ Wrap-around styles: athletes wear these for a reason, they work because they block light from every direction and are also great protection against the environment (wind, rain, pollen, dust)
Hats – These work excellent when used with sunglasses. A wide brim hat is a better option that a cap as it also blocks light from the sides.
Blindfolds/sleeping masks – Sometimes light sensitivity can even be a problem when your eyes are shut! Try using a sleeping mask when resting.
Light bulbs - Several low-watt lamps are easier on the eyes than one bright one. Favour clear incandescent bulbs and halogen lamps powered by direct current. Dimmer switches are also an excellent option where possible.
Blinds and Curtains - are both life savers for people with light sensitivity. Blackout curtain lining and blackout blinds are both available and can really block out light.
‘Uplighter’ light shades - reduce glare. They work by deflecting the light towards the ceiling.
Managing Sound Sensitivity
Ear plugs – These are a must for people with sound sensitivity. There are different kinds of plugs that block out sound including moulded plugs which tend to be more effective
Communication – By letting those that you live and work with know how sound affects you, they are more likely to be respectful to your sensitivity if they have a better understanding of the discomfort and pain that you experience
Noise cancelling headphones – were designed for airplanes and loud environments but can help you in everyday life. They work by reducing unwanted ambient sounds through the use of active noise control
White noise - is a special type of sound signal which is used to mask background sounds. You play it through your headphones as you would normal music. There are many apps which you can download to give it a try
Install sound-absorbing materials – There are changes which you can make to your home to “soundproof it” by using acoustic ceiling tiles, carpets, curtains, table cloths and upholstered furnishings to soak up excessive sound. You can use these techniques to make your home a nice and quiet place
Managing Smell Sensitivity
Monitor the unwanted smells – Keep a record to figure out which fragrances bother you. Make a note of the laundry product, hair spray, deodorant or perfume that upsets you. This way you can avoid purchasing that product in the future. You can either record this on paper or in your phone as a note
Have a game plan for events – Sometimes you may have to go somewhere that will have unwanted smells such as perfumes and colognes. Bring any medications you have been prescribed which may aid with your sensitivity. Try to locate yourself where the ventilation is good such as by a window or by the air conditioner. Take regular fresh air breaks outside if necessary
Be wise with products – Many house cleaners and personal soaps and deodorants can be triggers. There are many different options which you can try, I personally find that the natural cleaners and bathroom products affect me far less, I also managed to find a natural non scented deodorant which has provided me with great relief
Consider buying an air purifier or a fan - These may help rid your home of unwanted smells. These can easily be purchased online or at a department store. You can even help yourself by keeping your house well ventilated through keeping windows open
Educate others – By letting others know what you experience with certain perfumes and scents they will be more likely to respect your needs if they know how badly you are affected. Ensure they know that it is nothing personal against them, it is just your medical condition
Seek medical advice – You may have certain allergies which your doctor can help test for. They may also have additional tips to help you manage your condition
I feel mindfulness deserves its own section because it is a free, and effective method that can help you manage uncomfortable experiences due to your sensitivities.
By focussing on other senses such as touch you can divert your brains attention away from the negative arousal you are experiencing. For instance, if you are in a situation where you are experiencing a smell sensitivity due to someone’s perfume and you can’t get away from them, try focussing your attention on what you can feel and see, what does your chair feel like? What do your feet feel like in your shoes? What colours can you see? What texture is the floor? Etc
Whilst this technique will not magically make the irritation go away, it can lessen the panic, anxiety and overall negative impact of your experience. The more you practice mindfulness, the greater the effects will be.
I personally know that living with sensitivity problems is no easy task; hopefully all of the above strategies will make life a little bit more comfortable for you.
For more info on ME/CFS click here
For more info on Fibromyalgia click here