​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/CFS.

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!

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 even Myalgic Encephalomyelitis and 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.

I asked people in a support group to share their experience of photophobia. So, at the end of this page you can read how light affects 20 different people. I’m sure you’ll be surprised by what you read. I know I was!

Can Light ​Cause Physical Pain?

In my personal experience, 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.

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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 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 pair. They are also sometimes called computer glasses or gaming glasses as they also relieve the strain you get from looking at computer screens.

If you don’t need prescription glasses, then buying some dedicated migraine lenses or blue light filter glasses could be a great help. Below are some of the most popular ones I found on Amazon in varying price points. I’d read reviews to make sure you get the right one for your needs. Amazon does offer returns though, so it’s worth a shot if you don’t already wear prescription glasses you can tint.

Hats, Caps and Visors

I don’t only protect my eyes with tinted glasses though. I sometimes ​wear a hat, cap or visor to help shade my face – even inside the house!

When your eyes can tolerate indirect light, maybe because you’re wearing tinted glasses, ​then shading your eyes from the direct light ​of a ceiling fixture with a hat or cap can be a great help. 

I love this wide rim visor I got because it comes down low on the sides too, so I don’t get light coming in from the sides of the tinted glasses. Here are some other great options I found:

Blinds And Black-out Curtains

I use a combination of horizontal “venetian” blinds and Blackout curtains – they 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!

The blinds allow light to filter through at varying degrees and allows me to direct the light away from my eyes or reflective surfaces. It just allows more control.

​Blackout curtains come in all different colours, but 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 allows less flexibility.  

You can also get just the blackout curtain liners to attach to your existing curtains if you don’t want to change the whole look of your space. There are “no sew” kits available too!

We have, ​in the past, taped the sides of the curtains to the walls during my worst flares, but now I just use a sleep mask when I need total darkness. Which brings me to my next favourite item:

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.

It’s super lightweight, flexible and foldable, which makes it easy to carry or keep in your bag or pocket when traveling.

Update 2024: I now have a few of them, in various colours, and have been using them for years. They’re one of my favourite aids for photophobia and naps and I use them almost everyday.

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

For more options, here are some of the bestselling sleep masks on Amazon:

​Colour Changing Lights and Dimmers

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 environment right from my bed or sofa. 

These dimmable, colour changing light bulbs let me switch between colours and brightness until my eyes and body are comfortable, and I can change it up as needed. Sometimes it’s purple, sometimes its green, in the evenings I often use orange or red. Fantastic!

Update 2024: We bought a pack of light bulbs, years ago, and have not had to change them out yet.

If you want to equip your entire house with smart bulbs and be able to control it all from your phone, then Philips Hue is a range of bulbs and smart lighting solutions that can control the lighting in your whole house via Bluetooth. But that convenience comes at a higher cost too.

Here are some of the bestselling dimmable, colour changing light bulbs on Amazon.

Strategically Placed Lamps

​Another way to help with light sensitivity is to use strategically placed lamps rather than overhead lighting. 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. I’ve also hung fairy lights up above my headboard, this gives a lovely atmosphere to a room, but keeps the lights out of line of sight.

You could even attach an LED light strip to the back of your headboard. That way it is hidden, but will light up the back wall when needed. I think I’ll be trying this out in the future too.

I hope this list of solutions was helpful to you. They are all a part of my daily life now and I would really be struggling if I didn’t have all these solutions in place.

Do You Have Photophobia / Light Sensitivity?

If you’re like me, you might not know it until you pay very specific attention to how you’re feeling in light or with eyes exposed to light versus having your eyes or whole body protected from light. Below are the experiences of 20 other people with ME/CFS. I hope that by sharing their stories, it might help somebody else figure things out about their own condition.

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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 across the board. So I reached out to the community and asked them to share how light affects them and their symptoms. Here’s what they said:

1. ​Makes my speech go completely and comes back in 3-4 minutes.
2. ​It’s only my eyes and sinuses that actually hurt.
3. 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.
4. 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’.
5. 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.
6. Often extreme for me, and daily disabling to some degree.
7. 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.
8. 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.
9. Mainly dries out my eyes very fast and they become painful.
10. I need time away from light each day when possible. I can’t cope with fluorescent lighting and 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!
11. ​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.
12. ​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.
13. 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.
14. 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.
15. It makes my symptoms increase dramatically. I am homebound and mostly bedridden. Light sensitivity can literally knock me out.
16. 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.
17. 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!
18. 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 and I am unable to concentrate on even simple tasks or participate in conversations.
19. When I get an unexpected glimpse of the sun, like a reflection from a wall or 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 to my toes.
20. I can get quite confused, and just need to get away from the stimulus.

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. 

How About You?

I hope this post has helped you understand the debilitating effects of photophobia and perhaps inspired you to find new ways to improve your own quality of life or that of a loved one. 

I’d love to hear about your experience with light sensitivity, feel free to leave a comment below, or send me an email if you’d prefer that.