Photophobia: 6 Ways To Cope With Light Sensitivity

In a dark room a hand is held up to block the light that is shining in. Title reads, Photophobia in ME and CFS. 20 Patients share their experience.

​Have you ever experienced that moment of intense pain in your eyes and head when you've opened the curtains on a bright and sunny day? Anybody who has experienced a migraine or even a hangover would likely understand what I'm talking about too. Although photophobia or light sensitivity ​might ​seem quite common among ​the general population, it can be quite debilitating when combined with a chronic illness like ME.

Most people struggle with glare and direct sunlight in their eyes, but what you might not realise is that some people with ​chronic illness actually cannot tolerate any light at all and might have to spend hours, days, weeks or even months in the dark - and it's not just pain in the eyes that they're avoiding!

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Photophobia In ME and CFS

​Most people are aware of glaucoma or cataracts causing light sensitivity, it makes sense that an eye condition would cause ​sensitivity, but many people don't realise that Myalgic Encephalomyelitis and even Chronic Fatigue Syndrome patients will also suffer from photophobia.

It is quite a common symptom in fact, for many of us it is more disabling than any fatigue we might feel. Ironic, isn't it? And the photophobia doesn't just cause pain in our eyes or head, but can cause ​a variety of symptoms or even a general increase in all our symptoms.

20 Patients Share Their Experience

​As is common with both ME and CFS, each patient will experience the illness differently. Therein lies the difficulty in finding a widely accepted treatment or even a biomarker that can be applied accross the board. So I have reached out to the community and asked them to share how light affects them and their symptoms. Here's what they said:

  • ​Makes my speech go completely and comes back in 3-4 minutes.
  • ​It's only my eyes and sinuses that actually hurt
  • The pain of light​ sends shockwaves through the whole of my body. It causes widespread pain and a kind of 'screaming' on the inside of my body.
  • Exposure to too much light also starts me off juddering and I become unable to speak. Apparently I visibly pale and my eyes go dark and 'odd'.
  • I feel worse and worse. Most symptoms worsen, especially the dizziness and it directly causes pain in my eyes & head -  It just causes bodily distress really - shaking, heartrate up, until I am back into a duller room, darkened space again, and I will take a while to recover. Going outside without sunglasses is killer
  • Often extreme for me, and daily disabling to some degree.
  • I'm practically living in sunglasses during the day, if I don't I get migraines. Driving home in the dark today was vile, my eyes have been sore & weeping since.
  • I wear sunglasses indoors, I find the glare from headlights blinding at night. Don’t drive in the dark much but even as a passenger can’t stand it.
  • Mainly dries out my eyes very fast and they become painful
  • I need time away from light each day when possible. I can’t cope with fluorescent lighting & lamps are better than big lights. We also had to change our Christmas tree lights this year as too bright - causing headaches, pain, feeling weird!
  • ​I have to wear sunglasses outside at all time and sometimes in shops. Outside light is blinding and headache inducing. Fluorescent light can be nauseating. I also don't have lights on very bright at night. I wear glasses with a blue light filter at night.
  • ​Light sources at night ​need to be out of my eyeline, and I can't sit facing the Sun outside. Being a passenger in a car at night is a problem and I sometimes will close my eyes to block out the light.
  • I can let the daylight in but not direct sunlight, but sometimes I also flare and then all light is nauseating, makes me feel hot and unwell and gives me a piercing headache and I can't look at my phone or watch tv. I just have to sit in the dark and take painkillers until it calms down
  • Mine’s not too severe but I can’t manage an overhead light. It’s like the visual equivalent of trying to do a maths problem when someone else is shouting random numbers. Lamps are my friends. Also. Flashing lights. Uggghhhh I just immediately feel like I’m going to pass out.
  • It makes my symptoms increase dramatically. I am homebound and mostly bedridden. Light sensitivity can literally knock me out.
  • If I do need to go out in day light, I would wear sunglasses, even on the dullest of days. I usually use lamps, overhead lights can be unbearable. I would quickly feel overloaded, and want to get away from the overwhelming stimulus. Excess light may be my main migraine trigger.
  • Fluorescent lighting is unbearable! Pain pain pain! Starts in eyes, they actually swell! Then pain goes to head, face, neck and shoulders feel like it’s in a vice! Then they get very blurry start to feel faint & disoriented But I’m not sure if it just lighting or sensory overload!
  • I never have a main overhead light on in a room In public I avoid buildings with fluorescent lighting I have found to my cost it triggers headaches & exacerbates fatigue & am unable to concentrate on even simple tasks or participate in conversations
  • When I get a unexpected glimpse of the sun like a reflection from a walor window, it feels like a nuclear bomb going off in my head, and when flashing ads come on TV, even though my eyes are closed, it feels as though the impulses travel down my toes
  • I can get quite confused, and just need to get away from the stimulus.

Can Light ​Cause Physical Pain?

In my personal experince, light can cause physical pain throughout the body. If you think of an aching tooth pain that radiates into your jaw and maybe up into your head... it's that sort of pain I get from light. It's constant and radiates through the bones and flesh.

Sometimes its quite sharp too. More like a lightning bolt ​or shockwave shooting through the body​. That's how I picture this pain. It can also cause me confusion or rapidly drain my energy within minutes so that I am unable to speak or move. It can be quite disabling! Fortunately, retreating into darkness can help restore function quite quickly.

I didn't realise it initially, it doesn't seem to make sense, so I didn't put two and two together, but one day when my sister and I were sharing a room, I put on an eye mask so I could sleep in the day while she was still up and about and I literally felt the pain diminish all over my body within ​minutes. That was the day I realised ​how beneficial lying in the dark ​was.

Yes, there are days I can feel the pain in my eyes right away and I know for sure it's the light causing my problems, but sometimes it's more subtle. I won't get the pain in my eyes, but the rest of my body will be in pain - I have found that light is still a trigger for this pain and dimming lights or complete darkness help. I imagine it is a neurological reaction or maybe a sensory processing problem.

It has since become a regular part of my routine to spend some time in the dark daily. Whether it's just a few hours after waking or closing my curtains around noon when the sun is brightest ​or resting with a mask on. It just helps my body to recover faster. 

For some reason light causes me pain, and if you've ever experienced full body pain, you will know that along with that comes tense muscles and much discomfort, maybe even moodiness. And all of those things require energy and exertion which somebody with ME cannot afford to expend. So anything to alleviate the strain on my body is a good thing.

​6 Ways To ​Manage Light Sensitivity

​Here are a few things you can do, and a few items I use regularly, to help manage photophobia. I hope you will find ​these helpful.

Tinted Glasses & Migraine Lenses

There are various types of tinted glasses for light sensitivity​. I've had my prescription lenses tinted to varying degrees of brown/yellow, so I use a variety of tinted glasses daily. I switch between them depending on how much light is coming in through the window and how much pain I'm in. 

I have some friends who use ​pink or green migraine lenses or the yellow tinted blue light filter lenses too. Ideally you'll want to test them to see which filters put less strain on your eyes. You should feel the relief when you put on the right one.

​Anti Migraine Lenses

Blue Light Filter

Hats and Caps

I sometimes ​wear a hat or cap in the house too! When your eyes can tolerate indirect light, maybe because you're wearing tinted glasses, ​then shading your eyes from the direct light ​of the ceiling fixture with a hat or cap can be a great help. 

Black-out Curtains

These are such a big help! I've had them installed in my bedroom and living room so that I can enjoy some days on the sofa too. Nothing worse than making it all the way across the house only to find the living room is too bright and you have to trek all the way back!

Blackout curtains let much less light in, the only issue is that light will filter in around the curtains, so if you need complete darkness, then sticking ​blackout adhesive film to the window pane itself would be more efficient, but that's also more permanent. 

We have, ​in the past, taped the sides of the curtains to the walls during my bad flares, but now I just use a sleep mask when I need total darkness.

Blackout ​Curtains

Blackout Adhesive Film

Blackout Sleep Masks

I have always had a love-hate relationship with sleep masks. I like that they black out most of the light, allowing you to sleep better at any time, but the elastic bands always pulled them tighter across my eyeballs and that really annoyed me.

I was recently gifted a fabulous eye mask though, this ​mask by Bedtime Bliss is more like a padded bra for your eyes! Seriously, it holds its shape and doesn't even touch your eyeballs. So you can keep your eyes open or closed while wearing it. This is my new favourite aid for photophobia.

​I have had some good daytime naps on migraine days as well as been able to stay awake and plan things while lying in complete darkness on my ​sensitive days. I am excited for the summer when I hope to get out and lie in the sun with my mask on. Vitamin D and total darkness - get the best of both worlds!

​Colour Changing Light and Dimmer

Another great aid my parents recently got for me is a remote controlled light bulb that changes colour and has a dimmer. I can now control my enviromnet much easier, right from my bed. 

I can switch between colours and brightness until my eyes and body are comfortable and change it up as needed. Sometimes it's orange, sometimes its green, in the evenings I often use red. Fantastic!

Strategically Placed Lamps

​Another way to help with light sensitivity is to use strategically placed lamps. I have a light clamped to the frame of my bed.

So when my mattress is lifted up in a reclined position, the light is below and behind me, right out of view, but provides a gentle yellow light ​on the wall behind me that I can tolerate well most ​evenings.

I also have another lamp which is on the bedside table, but again, when my bed is reclined as it is most of the time, the lamp is behind me and ​out of my peripheral view.

In a dark room a hand is held up to block out hte light that is coming in. Title reads, Light Sensitivity and chronic illness, 6 ways to minimise the effects of photophobia

​As you can see, there are many manifestations of light sensitivity, and although it can be extremely debilitating for some, there are many things you can do to alleviate the strain light puts on your body. 

I hope this post has helped you understand the debilitating effects of photophobia ​if you aren't a sufferer or perhaps it has inspired you to find new solutions that might improve your quality of life or that of your loved one. 

How About You?

I'd love to hear about your experience with photophobia, do leave a comment or send me an email.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #pwME #MyalgicE #MEcfs

email chronically hopeful char at gmail dot com
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  • Great post! I had an EEG yesterday with a strobe light and it felt like torture! I’m still trying to recover, hoping for a better tomorrow. Thank you for sharing this information, it’s something not a lot of people can understand if you don’t experience it.

    • Oh no! The EEG sounds awful. I hope you will have a swift recovery, Mishka. Don’t you find hospitals and doctors surgeries really have harsh lighting? It’s part of the reason why I don’t even go to the doctor anymore. The waiting rooms are torture. I’m glad you liked the post. Wishing you a good rest and a lovely Christmas season. xx

      • Yes, the lighting is so bright. I wish I could avoid all these appointments but I’ve been fighting for disability payments for years with no luck and have to show that what’s wrong and keep going since everything is based off medical records. To go to an appointment where you know they are going to try to evoke your symptoms to show what is happening seems so cruel but I can’t live without income forever so I warrior on. We are a strong bunch of folks, of that I’m certain!!

  • Shannon says:

    Oh, I love my eye mask but that ones look AMAZING! I have been meaning to get the blue light filter glasses, thank you for the reminder. I don’t think I’m as sensitive as many but the headaches do come after a healthy dose of light exposure. Thank you for this post!

    • The eyemask really is amazing! I have never used eye masks this much. A lovely retreat wherever you are… aaah, darkness! It’s incredible how light can drain me, apart from the pain, the energy drain is just wow. Glad this post has encouraged and reminded you to take care of your eyes. Get those lenses and mask, lovely!

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